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flhin {lnh'ersHy Prc.,;;s The Ridge~'- Building 19 c\lhens, Ohi<> 4o ~\ll vrvvw .nhincdu.nupt c~:3 Dnuhk Storey nr}<Jks a juta compc:my 1\.Jerrnry Cre':wcnt \Vetton. Cape Iorrq, 77R0. ~c)ulh :\f\ !c<1
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Origins
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3 4
British Library Cataloging in PnhHcatinn Data lliffe. john T(w African Aid~ epidemic : n hls1ory L Aid~ (Disease) /\Jrica Epidemks - Africa Hi~
tibrarJ of Congress
Wffe, fnhn Thf' /\Jrican Aids C'piJ('mic : p. em.
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('ata!oging-in-Pnh~ieation na~a
history / John llilTe.
Incl1Tdes bibHogrnpbicalleferences m1d index.
!SBN O~R214~ l6RX~X (aile paper) ~·ISBN ll~B214~ 16~9 R (pbk : alk. P"Pcr I 1. /\h1s (Dist'ase)--1\t'rica-.-}Jistory. I. Title. RAh43.R6.A 1SH3 200o
TJpesct. in l 0/10. S p1 Ptwtlrw by Long House, Cmnt 1ria Prinl·ecl <md honnd in Britilin at the UnivPrsity F're~:->, Cambridge
Epidemic in Western Equatorial The Drive to the Easl
The Conquesi of the South
6
The Penetration of the West
7
Causation: A
8 9
10
19 33 48
58
Responses from Above
Views from Below
65
80 v
Contents
vi
]0
NGOs
& the Evolution of Care
De at l!
8r the Household
98
11 reface
1I
The EpidPmic Matures
1
Conlainrnent
14
'J[-
Conclusion Notes Further Reading
202
Index
am indebted to the staiT of many libraries: University Li_hrary, i\iedical Librm y. Afriran Stndies Centre Library, and St John's College Library, _ __ Cambridge; London School of Hygiene and Tropical Medicine: School of Oriental and African Studies. London: British Library for Development Studies. Falmer: British Library. London and Boston Spa; Library of Congress, \Vashington: South African National Library. Pretoria ;:md Cape Town: University of Cape Town Library: Cullen Library, University of the VVitwatersrand: Ministry r>f Health, Entebbe: Makerere l'nlversity Library: Albert Cook Memorial Library_ Medical Lihrary, Kenya!ta National Hospit
ander!aken 'Writing the hook bas left me with profoand respect for the epidemiolPgists and medical scientists nn whose work it draws. Jf. through ignorance or hubris. l lm1·c misrepresented any
rJf
their findings. 1
apologis~
in advGnce.
John lli!fe
1:Vcsil'm Equotorhrl ilftica 20
2
Soutlrem 1 1/i'ica 4
sn vii
NS
OCEAC
flbbreviaUons
PEP FAR
PHC
PLWA l'LWB/\
HNA
SiL\1) SS,\1
STD STJ S\VAA
TAC
iii\!\ Aids
i\NC iiRHR ART
ARV
AT ICC
AZT
BI'viJ C;\R
CHEP
CRF DNA
EJliD FACT Fi\0
IIAART IHV HSV lTfH
IDS lDU
lFORD /fSii
jA!\1Jl
l\fRC JVlONGOs NACOSA NACWOLA NAPWA NE]M
NWJ viii
£lids clnalusis A/rim
i\.cquired innnune deticiency syndrorne African National Congress (of South Africa) :lids Research and Hzmum Rctrol'imses Antirctroviral treatment Antiretroviral /\ids training, lnfurrnatkH1 and cnunscihng centre Azidothymidine
British ,~1edicalfom nnl
Central African Republic Copperbelt Health Education Project Circulating recombinant form Deoxiribonucleic acid
Etlliopimz Joumal of Hcait!z Dcve/opnzwt
Family Aids Caring Trust Food and Agriculture Organbation Highly active anliretroviral therapy Human immunodeficiency virus Herpes simplex virus llcalth Tmnsiiion Review Institute of Development Studies Injecting drug u:;cr , _ Instilut de Fonn
TASO TIIET;\ TRST 1\1H liMOH U~BlllS
liNDP LING ASS
TJN!CEF
DNII:UN
LJSAill !JWESO
VCT
IVAMATi\ WlJO \VHO:GPA
"1bbrcviations iJ Nevv series
Organisation de Coordination pour !a Lultc contrc les Centrale Presidential Emergency Programme for Ai.ls Relief Primary health care People living vvilh Aids People living with HfV/ Aids Ribonucleic acid South ilfrican
Endemics en
Social Science and lnmsmilled disease transmitted infection Society for Women and Aids in Ah-ica Treatment ,\ctirm Campaign The Aids Support Organisation Traditional He;1lers and Therapies Against Aids TransucUons of Ihe Royal Society ol Tropical A'/edicine and
1/uyielle
Ugcmda of lleahh Joirn llnited Nations Programme on Aids United Nations Development Programme United Nations General Assembly Special Session
United Nations Children's Fnnd
United Nations lntegraled Kegional lnl(mnaiiun Netwurk
United States Aid i(Jr International llerclopmenr
llgunda Womeu's Emwt to Save Orphans Counselling and Testing People Struggling Against Aids in Tanzania VVorld Healtlz Organisation World Health Organisation: Clobal Programme on Aids
1
Intentions
T
his book has a modest purpos.e. Man.y history students int·erested in Africa wish to study the HIV/Aids epidemic but are hampered by the lack of an introduction to the detailed literature. This book is intended as an introduction, for students and other readers. The book is not a work of research. A thorough history of the epidemic during its first thirty years would demand fieldwork in affected communities, interviews with those involved, and study of unpublished records of inter-. national organisations, national governments, and private individuals. I have not attempted any of these, nor have I the necessary medical and anthropological skills. Instead, the book is a synthesis of the more important and accessihlt> published material, put into a historical form. A Ju,l.urical account offers four advantages. First, it suggests an answer to the question posed most provocatively by President Mbeki of South Africa: why has Africa had a uniquely terrible HIV I Aids epidemic?' Mbeki attributed this to poverty and exploitation. Some earlier analysts suggested that Africa had a distinctive sexual system. 2 This book, by contrast, stresses historical sequence: that Africa had the worst epidemic because it had the first epidemic established in the general population before anyone knew the disease existed. Other factors contributed, including poverty and gender relationships, but the fundamental answer to Mbeki's question was time. Like industrial revolutions or nationalist movements, Aids epidemics make sense only as a sequence. Second, a historical approach highlights the evolution and role of the virus. Because HIV evolves with extraordinary speed and complexity, and because that evolution has taken place under the eyes of modern medical science, it is possible to write a history of the virus itself in a way that is probably unique among human epidemic diseases. At the same time, the distinctive character of the virus - mildly infectious, slow-acting, ineradicable, fatal - has shaped both the disease and human responses to it. Third, many aspects of the epidemic come into focus only when seen in the longer context of African history. Although HIV/Aids was profoundly different from earlier African epidemics, it arose from the human penetration of the natural ecosystem that is the most continuous theme of the African past. That
2
Illtentions
tbe virus created a continental epidemic, however, was a consequence of Africa's massive demographic growth, urbanisation. and social change during the later twentieth century. Everywhere the took its shape from lbe structure of the commercial economy lhal had grown up during the colonial Human responses, in turn, became p;:,ri of
21
()rig ins
'l.r·lhe
earliest cunvincing evidence !lf ll10 human irnmmwctdkien,:y virus (H!V) thai causes !be acljmred immune ddicicncy syndrome (Ahls) was gcilhercd in 1959 amidst the collapse of European colonial rule in Afrka. ln !cmuary l 959 rioters briefly seized Ctm!rol of the f\li·ican !ownships of Leopoldville, lhe capital of lhc Bc!gi<m C.mgo, siwcb.ing ils rulers into frantic decokmbaliou. ln the same year an Arneri.can researcher swdying malaria toDk blood specimens from patients in Lhe c:ily. When testing procedures !(Jr HJV became available during the mid 198Us, 671 of his 1\·ozcn specirnetls hum diflenmt parts CljtHil
or
4 Oliyins
!aler questioned. Other possible early cases were found in wcslem Africa. There was no stored blood by which to cunfirm a specialist'::; retro· spcciive diagnosis of Aids in an :\frican woman who was hospitalised a! Lisala on !he middle Congo in ] 958 and died in Kinshasa four years later aflc'r suffering wasting and Kaposi's sarcoma. But a Norwegian seaman cuntracrtd HIV some time l;ei(Jrc 1966, possibly while vi::;i!ing DiluuJa on ihe coast of Cameroun in l'Hil-·2. and later infected his wif,· and child; all thre(c relrospectively tested IJ!V -positive, altiwugh with a form of the virus diiT,·: · ·.' from that found in Kinshasa iu 1959. These cases are intriguing and were the bases for early controversy about the origins of HIV, but they r.cveal li!tk except that it exis!ed bm w<>s rare in the l ':l50s. The real grounds for believing that llle dominant form of the virus originated in western equatorial 1\ii:ica, probably in the Lroatl area of Cameroun and the Democratic Republic of Congo (DH Congo). lie in three other directions. One is that HIV clearly results fwm the transmission lo human beings of the ancient and related simian immunodeflciency \·irus an infection of African monkeys that had also spread to chimpanzees." Thal such an animal disea~e should pass to humans is not surprising, because several major human infectious diseases are contracted from animals. notably plagHe, sleeping sickness, yellow fever, some forms of influenza, and, mosl recently. Creutzfeldt-!akob', Disease 5 How such a ln1llsmi:;sion tonk place wilh HIV will never be knmvn, bul one possibHi1y may have been infection by blood in the course of hunting as men penetrated the eyunlorial forest. One study of ] .OY9 people engaged in hunting and butchering in Cameroun, published in 2004, found t:cn who had contracted simian viruses. although in this case not HJV.b Aids is a by-product of the human mastering of tbc natural cm·inmn1ent that has been the: core of A.frican bistory. SIV has been transmitted from ;:mimals w luumms at lca~t eleven times ;mel probably many more. There are two forms of the human disease: HI\' ·l, which is responsible fur the glob<.ll /\ids epidemic, and BlV-.2., wbich is less virulent <md infectious and virtually confined lo the West African coast between Senegal and Cote d'lvuire. HIV-.2., discussed in Chapter 6, is closely rciated to the SIV common in the sooty wangabey monkeys uf that region. Bv 2005, HlV-2 infections had been divided into eighl groups. each believed have resulted from a separate transmission. On1y two nf these groups, lettered A and B, had established themselves as human epidemks, suggesting thai many unsuccessfltl transmissions may abo have taken place in !he pasL 7 Ily contrast, the anima[ virus most similar to (alihougb still quite distant r;~om) IHV-1 and probably ancestral toil is the SIV occa,iunally harboured by a species of chimpanzee (Pan troglodytes troglodytes) whos
t,;
Oriuins 5 luving infected the 1\lorwegian seaman during ihe l960s, but it remained brgely cnn[ined to the Yicinity of Camemnn, even there causing !ewer !iwn l () per c,;nll of HlV caoes ill the early 2U00s. l;roup N was a Idler trilnsrni~sion auJ retnained \'ecy n::~re; in 2U05 on!y seven cases v\rere knovvn, all in Camaoun." Th,; fact that the likely viral ancestor of IHV--1 has b,;eu li•tmd ollly in the chimpanzees of equatorial Albea is nne of the three reasons for thinking that the originated there. The second reason is llmt only that region harhonr,;d not only all three groups ul IHV-1 but all the subgroups of !!,,, dominant group M 9 The significance of this point cirises from the nature of !be vims-' 0 The human immunodellciency virus is ulmost incunceivably smalt one len-thousandth of a millimetre in diameter. ll cnusisls of a of genetic information (a genomej surrounded by a protein envelope, the whole ,·unluining nine genes, when:as a human being has 30,000 -40,000. Like aH viruses. H!V hess no liL: of its own but i;, a parasite cells, ils Iii(; J\·om theirs. Transmit!ed from one body to another by Llood, gcnil
ur
fl Orif)ins
Unlike many olher viruses, such as inllucnza, HlV stnlins do not u'""''''~'" one another at intervals bnt evolve and differentiate as !hey pass from one human hody to £UlOI her. Modern medical science can distinguish in great dd.ail between these strains and reconstruct their genetic relationships. This makes it possible to write a history of HlV and its epidemic dispersal in a way that may be impossible for any other disease, using eviderrce from stored blood and living bodies. The first pari. or this book outlines such a history fur the African continent. Moreover, medical science holds out at least the of dating this history. lt is plausible to argue that 1!1 V mutates so extensively that its overall mutation is at a regular speed, wbich can be calculated from the evolutionary distance between classilied specimens taken at known dales. This 'molecular clock' can then suggest dates for major evenls iu lhe sequence, such as the separation of one subgroup from another. One such calculation lhJm 144 dated specimens was published in 2000, using massive computing capacity at Los Alamos. lt suggested !hal the last common ancestor of HIV-l group M- the point a! which the subgroups of lhe global epidemic began to differentiate - lay <Jrmmd the year 1931, and 1Nith more confidence between 1915 and 1 941. Since tbe researchers knew that the genes composing thLo HIV genome mntate at different speeds, they compared lhis calculation, based on the rnost mutable envelope gene. with a cakulation from a less mlltuble gene, which suggested a 19 34 date. The rc::searcher~ checked their procedure lbrthcr by independently dating the e
Ori[!ins 7
especially successful. By .WO 5, 16 had beeu clussilied as recombimmt limns (CRFs), for each uf which al leas! three distinct specimens had been analysed. The most successful were CEFOJ i\E, the dominam l(>rrn of IllV in Asia, and responsible for at least two-thinb of West Ali·ican fHV infectim1s. 1'' Recombination is probably at ieast <JS important as : .. _. iun _i11 accelerating the evolution of I-! IV, but irs implications for dating ba,cd on a-!nokcular clo..:k Me complex and obscure. By blurring dill"ercnces between subgroups it might mai.:.c evolutionary ever:ls seem more recent than they were. but by tlie number of strains it might make the events seem more ancient than !hey were. The two IL:ams who estimated dates for the diilcrellliation or the l\I group tried to exclude the effects of recornbination, but geneticists feared that the problem was more di!licult and that ,:onclusions based on a molecular clock 'may he of very limited value'. 20 I-:!o\VC\Ter uncertain their findings, at1crnpts to dntc the epidetnic daritied several prublems in Together with the identification of the t9 59 case in Kinshasa. ruled out the theory, propounded in Edward Hooper's book, The River. thut. 1he IJIV-l t~pidemic had been caused by a polio immnnisation campaigu in the Congo region during 1')57-60 that allegedly used a vaccine bred on SlY-infected chimpanzee kidneys- a theory also conlradicted by negative tests on surviving vaccine samples. Instead, attempts at stimulated interest in the interw
c capable of epidemic expansion: penetration or 1he klresL fur rubber coJlection,. and increased viral transmission through labour concentrations and vaccine campaigns against sleeping sickness and m1allpox: and the adaptation of the virus to humans lhrough rapid pussaging by arm to-ann inoculation that would have the effect of acceleraring evolutim1n No direct evidence linking these innovations to HJV had been published 2005, bnt the problem of how a simian virus might become capable of causing a human epidemic attracted the attention o[ olh,,r researchers. HIV-1 group N and at least six transmissions of HIV-2 had not become suflkiently !nmsmissabte or infectious as to cause epidemics. These wccre the limns of Hl\1 most similar to SlV, so il appeared that the mere transmission of SIV to humans was unlikely to cause w;,!e_:spread disease; the virus must have evolved li:om STV to HJV within human bodies, and it must have done so for the first time and perhaps more or less simultancouslv in two groups of HIV-l and two of IHV-2. Preston Marx and olbers argued 'ihat the chance of I his happening natttrally was small'. lnstcad, rejecting the 19 j ' d".le li.>r the divcrsillcation of ihe l'vl group but accepting 1959 as the first documemcd HIV case, they ~uggcsted !hat SlV had been converted into HIV by rapid passaging through .Mrican populations the 1 ')'ills, owing to the introduction of supposedly disposable (but oilen in praciice re-used) syringes to inject penicillin and other new medications. Between l '!52 and !960 ammal world output of syringes increased lhml K million to l ,000 million 23
8 Origins These theories remained theories, but they indicated the kinds of evolutionary stages that may have produced HIV: probably multiple transmissions of SIV from sooty mangabey monkeys in West Afi:ica over a long period; perhaps less frequent transmissions of the rarer chimpanzee virus in western equatorial Africa; its evolution into HIV within human bodies, whether over some centuries or through the unintended effects of medical interventions; and its emergence by 1959 as a virus capable of causing a global human epidemic. Yet a difficulty remained: there was no visible epidemic in 1 9 59, nor for another twenty years. The likely reasons lay in three characteristics of the virus. First, as viruses go, HIV is difficult to transmit. Whereas influenza - 'the sickness of the air', as it was called in Ethiopia in 1918- can be transmitted aerially to anyone close enough to inhale it, HIV can be contracted only by absorption of blood, genital fluids, or milk from an infected human body. In heterosexual intercourse - the chief means of transmission in Africa - the chance of infection in one sexual act between otherwise healthy partners has been variously estimated at between 1 in 10,000 and 1 in 500. 24 To create and sustain an epidemic, therefore, requires special circumstances, but the chance of transmission increases substantially if either partner has a sexually transmitted disease or if the already-infected partner is in a particularly infectious condition. This is the case shortly after infection, when a person is perhaps eight or ten times more infectious than usual, and in the last stages of the disease, when infectivity is even greater. 25 The difficulty of transmitting HIV relates to the second likely reason for the slow emergence of a visible epidemic, which was the very gradual development of the disease within human bodies. For a few weeks after infection the virus has the advantage of surprise: viral load rises rapidly, lasting damage may be done to the immune system, and there may be feverish symptoms, perhaps often mistaken for malaria. Thereafter the immune system counter-attacks and an evenly matched war of attrition takes place in which HIV produces up to 10 billion new viral particles and destroys up to 2 billion CD4 helper T-cells each day. In HIV-1 this incubation period varies considerably but may last in adults for an average of nine or ten years - the period measured by a careful study in Uganda - before the immune system is so weakened that Aids supervenes. Death in untreated patients then follows almost invariably and relatively quickly, in an average of perhaps nine or ten months. 26 The infected person remains infectious throughout the disease. This long incubation period with only sporadic symptoms distinguishes HIVI Aids from previous epidemic diseases, renders it especially dangerous to human life, makes it difficult to check, ensures that it does not burn itself out, and, as will be seen, has given the Aids epidemic its unique character. As a comparison, the incubation period of influenza is not nine years but one to three days, while that of plague in Britain, considered unusually long and tL:refore dangerous, may have averaged about 30 days. 27 'What is serious,' a West African villager said of HIV, 'is that this disease is silent, hypocritical, visible only when the damage is already irreparable. '28 There was a third reason why the potentially epidemic virus that existed in 19 59 did not breed a visible epidemic for another twenty years. HIV I Aids does
Origins 9 not kill but destroys the immune system's capacity to resist other opportunistic inJections that are ultimately fatal. Some of these, notably ttiberculosis, were infections already current in the region concerned, so that it may not have been easy to discern that a new disease was present. Retrospectively, however, these opportunistic infections are the signs that first reveal the emerging HIV epide~. Their appearance in western equatorial Africa during the 19 70s is the third' reason - alongside the location of the simian ancestor and maximum diversity of subgroups - to believe that the HIV epidemic originated there.
3
Epidenzic
in Western Equatorial f~/]~ica
f-I
fV-l !lrst became epidemic dnring ihe 1970s in western equahJriol Africa. its place of origin. H was al llrst a silent epidemic. unnoticed until established tou firmly to be :,tuppccl. In lhis region, also. during the mid 1980s. the epidemiology of heterosexual was ilrst ddermined. exposing a pattern whose main features were to extend throughoul sub-Saharan Africa but whose local peculiarities were also to limit epidemic growth within the western equatorial region itself. From Ibis region. moreover, variants of the virus were carried to the rest or the continent. Ahbough HTV-1 had almost certainly existed in H!estcrn eqnalorJ<:Ji Africa since at least the 1950s, it had hitherto struggled even !o survire in a sparsely populated region of diflicnlt. often forested environments and poor communications. This was clear from a group of villages a! Yambuku in the north of the DR Congo. Blood taken li.·om 659 villagers there in 1976. during one of tbe first outbreaks of Ebola virus. later revealed !hat five (fUl per cent) were infecled with HIV. When the villagers were tested again ten years later, HIV prevalence was still 0.8 per cent. Of blood samples cullec!ed across the border in southern Sudan in 1976, 0.9 per cent subsequently revealed IlfV.' Such low levels of infection may well have existed in other rural areas of the equatorial region during the 197lls. They existed also in Kinshasa. One of those testing positive at Yambuku had probably contracted lhc disease in the capital during the early 1970s. Of 805 blood spccim..;ns taken from pregnant women in Kinshasa in 1970. two later revealed HIV infection. So did blood taken there in 1972 li:,om two of four patients with Kaposi's s<Jrcmna 2 The conversiun of this low-hovel infection into an expansive probably took place in the urban envirumnent o!' Kinshasa during The key may well have been the exceptional inftcrivity of the newly which meant that if Llw virus entered a network nf sexual relationships in which partners were exchanged rapidly and extensively. it could build up a momentum of infection s11fficient to reach epidemic levels. That is what happened in the UHiletl States. where HJV prevalence among homosexnal men attending a sexually transmiltecl disease clinic in San Francisco
10
Epid,;Jnic in H'tslrm 1\qu,Jtoria! 1\jrica 11
12 L:pidemic ill Westcm Equatorial :lfl'ica rose between 1971\ am! 198'1 from l per cent to CS per cent.' it happened al much the sarne period, although less explosively, among heterosexuah in the East African cities of Bujumbura, Kigali, <md Nairobi, as al:,,, rural south~weslcrn Uganda and in Abidjan in West Africa. The llrst occasion, how~ t'>vcr. wa~ in Kinshasa, INhere lllV first encountered rapid partner exchange in urban sexual networks wider. although no! necessarily much more promis-nwus, than lhose of the countryside. The Hrst person to notice the change may well have beell Dr Kapila Bila, the Congolese physician heading the internal medicine department at Kin~ shasa·s huge. 2.000-bed Mama Yerno Hospital. 'SometlJing dramatic happened in 19 7 5 ,' he recalled a decade later, referring especially to a doubling of cases of Kaposi's sarcoma, a tumour !hat could take aggressive forms when the immune system was damaged and hence often became a conspic:uons symptom of Aids. Other hospitals in the region observed this increase only in the later 1970s and c
hc~
Some developed such cxquisHely son~ rrwuths and l<;llgues thdt they \Vere unable to eat. Those 1-vhn conld nwnage a fo:~:-v bite:) of ~~)(Jd \Vere saddenb' strid\.en by LTL-unps und disgorged a copious amouDI of diarrhea. T1wlr :)kin \A'ould break ont in massive. gL~nerahsed c.ruptll1ns. h1fect.cd fungating II1i:bSC.S vvould appear in::;ide and outside thdr buJies. \Vhen ihc infection didn'i cdnsisL of VU(.d._:luU'3 yeast cells las in cryptococca1 nleningitis], there \Verc other parasites reaJy to cal the brain ill auy 1:1lay \·vhat vvas happening to alit'e. r·..Jone of the vklhns could in horror, onr roles us physicians Ihem or why. c\.nd we? All we could do reduced to scrupulous observers and accurale reL:urders uf Jocurnen.taliutL Our one bope was thaL if we could und(Tstnnd the pC(:·U:0~,e~:; Vv'IC vverc observing. so1neone, sontewhcre, ruight tlnd some solnUnn. 10
Dh:guosing by :;ymptums, the teun.~ idcntiiied 30 .~\ids cases in Kim:hasa's 20 men and 18 women. Of thesco. were l\otn Kinshasa itself. bul others came from all parts of the country, indicating how far the virus had spread. On 3 November the team presented its tlnrlil:gs at a medit:al meeting at Mama Yemo, warning !hat the disease apper the l(;ur million Kinois,' a {(Jreign journalist wrote in 1986, 'the disease, i
14 Epidemic in Western Equatorial Atl·ica
at between 0.5 and L ') per cent of hitherto tlninfccted pcople. 1'1 The Project also identified the means of transmission as sexllal intercourse, ,,xchange of blood hy injection or transfusion, and infedion from mother to child. excluding aerial transmission, insect vectors. and casual contact.'' Sexual transmission was bidirectional, whereas the possibility of women inftocting men had hitherto been uncertain. Among new infections. eleven were women to every ten men, although women in their twenties outnumbered men by thn:e to onc.H' In other respects those infected did not have a strong social profile. The earliest observed cases had often been prosperous people who could afford multiple partners and medical treatment, but antenatal prevalence at Mama Ycmo was somewhat higher than at a fee-paying hospitaL The age proflle, however, was distinctively bimodal, peakiug in infants and young adults. 17 Perinatal transmission and pediatric Aids 1verc: among the Project's most novel llr1dings. Mothers wilh HlV lost 2t per cent more of their babies in the lirst year oflife than did those without it, lhe risk varying with the stage of the mother's disease. 18 Adult HlV was associated wilh tuberculosis and sexually transmitted diseases, the latter being one of several indications linking HJV to risky sexual behaviour. Some 2 per cent of Kimhasa's commercial sex workers had HJV. 19 The Project also revealed an alarming connection bdween HIV transmission and blood transfusion, which had become common in large African hospitals since the Second World War. Mama Yemo gave abollt 80 trans!ilsions a day. chieily in childbirth or to severely anaemic children. The blood came li·om rdalives or was bought li_·om unemployed people recruited at the hospital gates. At least 5 per cent was infected with HJV. Since translilsion almost invariably transmitted the virus, the hospital was creating four new ITIV cases each day. Of its patients aged 2-14 a11d ion old to h<Jve been dearly iniected perinatally, 11 per cent were HIV-posilive and 60 per cent of these had received transfusions. 20 Injections with re-used and unhygienic needles were another alarming danger, for injections had been immensely popular among Atrican patients since the 1920s. The Project found that one group of HIV-infected children under 24 months oid with 1HV-negative mot hers had received an average of 44 injections (excluding vaccin;,Uons) during !hdr lives. Among adulis, HiV prevalence increased with the number of injections received. Il was impossible to demom;trate causation, for patients may have needed injections because they were already ill, but Mann concluded that infected blood was a significant factor in HIV transmission. although, as the age protlle suggested,. sexual intercourse was more importanl:. 21 Projd Sida effectively ended in 1991 when rioting soldiers luoted its premises and the expatriate sta!T withdrew, although Congolese doctors tried to continue the work. Meanwhile research had also re\'ealed the extent of HlV elsewhere in the western equatorial region. Kinshasa's epidemk bad spread up the river anJ into the neighbouring Lower Congo area, where estimated adult prevalence reached 4 per eent in semi-urhm1 and 2. 8 per cent in rural areas in 1989--90:' 2 The distanl mining towns of Katanga and their surrounding rural areas had similar prevalences at that time, 23 but little was known about the countryside outside the Lower Congo. Kinshasa's epidemic seems io have
Euuln11ic iu Weolent Equaloriul A/dca -1 5 1uudc
only a limited impuct on ihe immeusily of the country at this period,
Bra~zaville, across the river, appears to have shared Kinshasa's epidemic
palkrn at a ,;lower tempo. In the late l 'J70s it saw symptoms leiter characteristic of Aids and in ! 98.3 it sent patients to France for posilive investigation_ The urban epidemic then grew qnickly, reaching an adult prevalence of 8 per cent in 1991, whi!e spreading ;Ji roughly half that level to Oucssn in the north, Pointe-Noire in the west, and the rural Ni
north-west, an epidemic emerged more slowly. The Hrst evidence of lllV there dared li·om 198l and antenatal prevalence in the main towns of Libreville and Fnmceville ruse only to less than 2 per cent between l9gh and 1994, with even lmv
than Kinshasa's, expanding more rapidly both in the capila! <Jnd to the rest of the country. Do,;tors in Bangui began tn suspect Aids in ! 962, ,coullrmed H late in !983, and came to think that they had seen it some years earlier in cases of lTyptococcosis, tuberculosis, Kaposi's sarcoma. diarrhoea, and wasting. II IV must certainly have reached the region by the 1970s. Prevalence in Bangui's geneml population aged 15-45 rose !i·mn 2.3 per cent in l91l5 to 7.1:\ per cent in l 987. By 19') 1 pret>alence among antenatal women !her'" had reached l. 6 per cenL 17 French doc!ors blamed the epidemic on sexual behaviour in a rapidly expanding town duminated by (l!Jmarried young people from a couurry,;ide with traditions of considerable sexual freedom. ln 198 7, 'i8 per cent of respondents aged l 'i -+1 had had a child before the age of 20, 54 per cell! rcp<.t extra-marital sex, 81 per cent had suffered a S1CX11aliy transmilied disease, and only 34 per cent had used a condom. The epidemic was not primarily dne lu prostitution - not more than 21 per cent or Rangui's sex wurkc;rs were l-IlY-positive during the later 1 'J80s - but lo rapid partner change. averaging between 20 and 40 partners a year according to a group of 56 men aud '19 women examined in ! 98.3--5, 60 per cenl of whom wcre HIV-positive. Many poor young women engaged in sporadic subsistence sex. Multiple injections eight a year on average for those will! both HlV and tuberculosis in 1985-8 added to the risk. From about 1965, when prevalence began to grow rapidly in Bangui. the epidemic also spread more widely. By 19'.!0 some provincial towns ln dose communication with the capital had adult prevalence rates of il per ccnL Two years later similar levels were recorded at Berbcratl and (;;:;rnbonla, truck-stop
16 Epiileulic ill Wester11 Equatorial !l.Jdca near the Cameroun border with til's to diamond diggings that uitracted many young people, while at Mbaimboum, where Cmneroun, Chad, und the Central African Republic met, the prevalence among women in 1 ':!93 was 22.8 per cent In parts of the DR Congo bordering the CAR Aids was klwwn as 'Bangu!'. 2 lJ This account of the epidemic's origins in western equatorial Ali:tca has indicated distinctive circumstances thdt both enabled H!V-1 to establish itself as a human epidemic and constrained its growth within the region. Two circumstances were especially important. One was the mobility fostering the rapid spread of disease among young urban immigrants, truck drivers, alluvial miners, and their female partners. although const,·ained everywhere in tbc region by distance, insecurity, transport dilllculties, and sparsity of population. The other was ibe rapid urbanisation that had begun in the later colonial peric1d and escalated amidst postcolonial conllicts. Kinshasa had some iJJlO.OOO inhabitants when the earliest infected blood was collected there in 19 SY and four times as many when indications of an epidernic first '""""""u in the mid 1970s. Onl·e known as Kin !a Bdle (Kinshasa the Fair), it had become Kin Ja Poubelle (Kinshasa the Dustbin). Hs decaying modern core was ringed by unserviced squsUer settlements. The real value of ils ollicial minimum wage fell by 7 S per cent during the lirst sixteen years alter independencc in 1960. exceeded JO per cent for men in 1980 and was much higher for women. who made up only 4 per cent of the country's formal urban labour force. 30 While !he numbers of men and women in the city were roughly equal and nuclear families predominated, only 70 per cent of adult women were married in 1981, while their lack of economic oppcrlunity other than petty trade, together with a formerly polygynous culture in which young unmarried people hJd much sexual freedom and gilts were a normal part of love-making, led a proportion of young women to depend on sexual relation-ships with men either for survival or for otherwise unobtainable goods. 31 Full-time prostitution was probably less important than in some eastern Ali·ican cities where women did not trade and men heavily outnumbered them. In 1988 Kinshasa's sex workers averaged only 8.6 clients a week. compared with 35 among lower-class sex workers in Nairobi in 1987. Their 27 per cent HIV infection in 1985, although horrifying, contrasted with 61 per cent in Nairobi. It was estimated in 1988 that to eliminate all prostitution from Kinshasa would reduce HIV transmission by only 25 per cent The bulk of transmission was rather among a minmily of vulnerable individuals in wide networks of ephemeral sexual relationships in which the men were often significantly older and wealthier than the wumen. ln an illuminating contrast with Rwanda that would have applied to the whole western equatorial region, Michel Carael observed that with its bars, iLs precocious, free, and joyous sexuality despite immense poverty, its litany of bureaux (concubines)' was 'light years away' from the 'austere Catholic town' of Kigali, where men had exira--marital relations chielly with sex workers and then inJected their wives, so ihut HIV was most co~mnon in the age range 2 5-3 5, whereas in Kinshasa the disease was more widespread among older men and younger womcn.n Kinshasa's sexual pattern H!V town~
Epidemic· i11 Western Equatorial il.ji ica 1 7 to epidemic proportions, bu! not the explosive proportion seen in Kigali. This was reinforced by the fact that over 90 per cent of men in the western equatorial region were circumcised, which probably provided some pmtection bcc:cmse lhe foreskin was especially liable to vir
18 Epidemic in \iibtem Equatorial Africa conceutrations and the di!liculty of travel where transport had broken down and much violence and insecurity prevailed, ihese factors together preventing the !inking of sexual networks that commonly f(Jstered epidemics. The falsity of the common belief that 'war creates the perfect conditions li1r the spread of AIDS' 42 was also demonstrated at this lime in neighbouring Angola, where national antenatal prevalence after nearly 40 years of warfare was found by a survey in 2004 to be only 2.8 per cent, with the iowest figures in central provinces 'that have been more protected by the effect of war,' as the Vice-l'vlinister of Health put it. 43 By contrast, the two cotm!ries registering modest epidemic growth during the 1990s, Gabon and Cameroun, were the most peaceful in the region. The limited capacity for expansion shown by the western equatorial epidemic during the 1990s had as its counterpart the survival there ~ perhaps especially in the countryside~ of a diversity of HfV subtypes and recombinant forms far greater than anywhere else in tlte world. A more explosive ;idemic might well have swamped this diversity by a single dominant strain more like those created by founder effects elsewhere. Yet it was from this region that the various forms of the virus were carried to the rest of the continent and the world. The most spectacular illustration was the transmission of lhe circulating recombinant form CRFOlAE from its hearth in the northern DR Congo and the neighbouring Central Ali"ican Republic, where alone it was common early in the epidemic, to become lhe major strain of HIV in Soutb-Easl Asia, although the means of this transmission are unknown. A less dramatic example was the other major circulating recombinant, CRF02_AC, which provided 60 per cent of HfV-1 strains in Cameroun during the 1990s, especially in the north, aud some 54 per cent in Gabon. Its ancestors probably lay in the DR Congo~ one of them was a virus collected at Yam.buku in 1976 ~but CRF02_AG itself was rare in both Congos during the 1 ')LJOs and appears therefore to have taken shape in the Cameroun~Gabon region, whence it was carried northwards to become the dominant ltmn of the virus throughout West Africa. 45 By contrast, the subtypes (as distinct from CRFs) of HIV-l transmitted to other parts of the continent appear to have been carried directly from the DR Congo. Subtype i\ was the most common form there, especially in the north, and was carried into East Africa, where it shared predominance with subtype D, itself rare elsewhere except in the DR Congo."" Less certainly, subtype C, which came to dominate southern i\Jrica (and Ethiopia), was common only in tbe south of the DR Congo, whence il may have been carried southwards. 47 The history of this radiation lh1m the equatorial region is the next issue lo consider.
4
The lJrive to the ~East
I
'aslern Ali:ica was the lirsl. region to which UIV was carried Its w~skr~J :q:Ja1torial ori~in,. along several dilkrcm routes that ..Ju,nnut. notJ be tr aceu m detml. 1 he vJrus enkred a region divided mto two contrasting natural and social environments: the vvell-watered, densely peopled kingdoms around Lake Victoria and m 1 the Ethiopian plateau, and the less centralised societies in the drier savanna country where population clustered only on highland outcrops. in colonial cities along transport routes, and un the Indian Ocean coasl. This Ji-amework gave HlV !_Aids in eastern Africa ils distinctive contrast between explosive ep1dcnucs m the Lake Victoria basin and the capital cities, on the one band and slow pcnei.ratiun into lhe remainder of the region. on the other. Varyin~ relauonslups between cities and countryside were especially irnportant in the process. as were the mobile groups linking them toge!her aud the factors -widcspr~acl labour migration, male predominance in urban populations, low status of women. lack of circumcision, and prevalence of transmitted diseases that bred higher lev(Jls of inleclion than in wesiem equatorial
1~,om
Albea.
vims Urst entered the Lake Victoria ba,;in bordc:ring the DE Congo. l'a!le!Hs !rom Rwanda and Burundi were seen alongside Congole;;e in European hospitals during the late 1970s and early 1 '!80s. They not only Jed exp,J!nate researchers to visit Kigali as well as Kinshasa in 198 3 but eHcouraged observers of the epidemic to belie\/c that Rwanda. Burundi, and perhaps even Uganda harl been simultanccous or even earlier places of origin . western equatorial Africa. The location uf the chimpanzee host makc;s this unlikely, however, as docs the distribution of !llV-l subtvpes, for there is nu indication in the Lake Victoria basin of the of- strains found in !he DR Congo. Until well in!o the epidemic, the A and D subtypes dominated the region 1 In Rwanda the llrst probable case recorded was a mother who displayed ':haracterislic opportunistic infections in 19 77 and subsequently tested positive lor Hl V along with her husband and three children.' A retrospective study found that by l ')82 some 12 per cent of blood donors in Kigali were infected. -~ '!'
19
20 The Drive to the East
Map 2 Eastern Africa
1'/ze Drive to the East 21 The team visiting the hospital there a year later identified symptoms of Aids in 2 6 patients. 3 The virus had apparently established itself during the 19 70s and reached epidemic proportions by the early 1980s. The evidence from Burundi is even stronger, for 658 blood specimens taken during a study of haemorrhagic fever there in 1980-1 later revealed an HIV prevalence of 4.4 per cent, reaching 7.6 per cent in Bujumbura and 2.8 per cent in the countryside, at a time when Kinshasa's antenatal prevalence was only 3 per cent. During 1983 cryptococcal meningitis, Kaposi's sarcoma, tuberculosis, ami other opportunistic infections became increasingly common in Bujumbura and doctors suspected Aids, which was confirmed serologically in 1984. 4 Bujumbura's epidemic grew remarkably fast during the early 1980s. By 1986 some 16.3 per cent of women tested at antenatal clinics were infected. Thereafter growth slowed temporarily, rising only to an urban prevalence of 18.3 per cent in 1992, which nevertheless implied a high incidence of new cascs. 5 One reason for the epidemic's virulence may have been its close association with tuberculosis, long prevalent in Burundi. In 1986, 55 per cent of tuberculosis cases treated in Bujumbura were HIV-positive, while tuberculosis cases in Burundi as a whole increased between 1985 and 1991 by 140 per cent. The epidemic's most striking feature, however, was its urban concentration. While urban antenatal prevalence in 1992 was 18.3 per cent, it was only 5.2 per cent in semi-urban and 1.9 per cent in rural areas. 6 Rwanda's first rough sample survey of people of all ages in 1986 showed a similar contrast between 17.8 per cent prevalence in towns and only 1.3 per cent in the countryside. The highest rates among pregnant women were in Kigaii, where they rose even more quickly than in Bujumbura, reaching 33 per cent in 1993. 7 The rapid infection of Kigali and Bujumbura took place in countries where sexual behaviour among the overwhelmingly Christian general population was remarkably strict. In a survey conducted during the late 1980s, only 10 per cent of men and 3 per cent of women aged 15-19 in Burundi reported sexual intercourse during the last twelve months, compared with 51 per cent and 30 per cent respectively in the Central African Republic. 8 The result was a dilferent epidemic pattern, dominated not by widespread partner exchange but by commercial sex. Sex workers had long been Africa's urban witches, blamed for all manner of social ills, so that there is a danger of stereotyping their role in the epidemic. Yet everywhere in eastern Africa, except Uganda, they were the first focus of infection. In 1984 a study of 3 3 sex workers in Butare, Rwanda's second town and home to a military base and university, found 29 infected with HIV, along with 28 per cent of their clients, who frequented a median number of 31 sex workers a year. Of 300 Aids patients in Bujumbura in 1987-9, 106 of the 184 men had frequented sex workers and 21 of the 116 women had themselves been sex workers. 9 Both countries were overwhelmingly monogamous, with exceptional numbers of unmarried women. In the early 1990s Kigali had 50 per cent more men than women aged 20-39. Fifteen years earlier the city also had an estimated minimum of 2,000 femmes libres, many of them uprooted by the destruction of Tutsi power since the revolution of 1961. 10 On average, men in Kigali made their sexual
2 2 The Drive to Lite Eas! debut at 18 but married <1t 21--21:>; in t!Je meantime, since other young wmnen in this ·austere Catholic town' were carefully protected, they frequented sex workers and of1en continued to do so after marriage. Circumdsion was rare, condoms despised. sexually transmiltcd diseases widespread, sexual coercion common, and women depended overwhelmingly on a male partner for income. 11 Although epidemics in both corm tries initially focused around sex workers, therefore. their clients quickly spread the disease to their regular partners. In the late 1980s. 80 per cent of infected women and 76 per cent of infected men in Kigali had an in!Ccted partner, 12 On the eve of the genocide of 199-±, antenatal prevaknce iu !he Rwandan countryside - 'in the hills', as they said in Kigali- remained less than 5 per cent. In rural Burundi it was even lower.ll The contrast with the equal urban-rural prevalence that will be seen in Central All·ica is ditlkult lo explain in small countries with excellent transport systems, dense rural populations, and large income dilferenlials between town and country. The towns did spread infection lO their rural environs. A study in the Baiare region in ] 989-91 showed no association between IHV prevalence amoug rural women and the frequency with which they vio;iled the town, but a signil1cant association if their regular partner visited it doily.'-1 Yet these were small rowns. The largest, Kigali, had only 220,000 inhabitimls in l 'l86, only snme 3 per cent of Rwanda's population. They had no industry to al!ract !he long-staying migrant workers who were probably most responsihle JlJr spreadiug inJection to Central African villuges, Whatever the reason. Aidc. in Rwanda and Bnrnndi began and remained until the mid l99lls essentially an urban disease. Tlte contrusl elsewhere in the Lake Victoria region 'Was remarkabk. ln the lakeshore districts of Masaka and Rakai in south-western Uganda and the Kagera region of north-western Tanzania, Africa experienced its first ruralbased Aids epidemic, a product of a prospL;rous peasant society at a moment of profound crisis. In East Allica during the 1970s the post-iudcpcncleuce order was beginning to unravel. General Amin seized power in llgauda in 1971, precipitating eight years of violence and a magendo economy of illegnlity and self-help until the Tanzanian invasion uvenhrcw him in l 979. Tanzania, although politicully more stable, sutlered severe economic decline as a result of the socialist strategy adopted in 1967, a decline accentuating Kagera's long-standing problems of isolation, land scarcity, and agricultural decay. In Kenya. too, the prosperous era of jomo KenyaHa gave way from 1978 lo
growing stringency and corruption under Daniel arap MoL HIV penetrated first inlo the borderland between Uganda and Tanzania west of Lake Victoria. Some have bciieved that the virus bad been present in Uganda since the late 19 50s or 1960s, pointing especially to occasional cases of the aggressive form of Kaposi's sarcoma later foam! in some Aids patients. This is possible, but aggressive Kaposi's sarcoma was a consequence of
immune suppression rather than necessarily of Hl\'; nobody al the lime noticed any change in the epidemiology of the disease, as they did in th0 early ] 980s, and no stored blood from the region prim to the late 19 70s has shown lllV antibodieo>. 1 ; v\lithoul stronger e1 idencc it seems more in accord with the continental pattern of the epidemic to think that Aids lirst appeared
The Drive lo tile East 23 on the Uganda--Tanzania border in tlw lme 1970s and IJJV a lew years earlier. !!s arnval cannot llOIV be idenlilied exactly. i\l·cording to Uganda's chief symptoms later characteristic of Aids were flrs1 reported late in ] 982,
~":h~.;:l ,~C\ e1~al ~J,ll~iuessn1cn_
died at Ka::-::eusero,
t-lll
isolated snwll !bbh1g village on
Ldk~.., \,letona. J his smclll tU'IiVn \V(iS also tnutvn l(Jr smuggling and illicit trade. aud when these dc<~ths occurred le!low traders sht-ugged il oil' us witchcrutt Othcn; tbought li \'vas natura] jnsticc againsi thost: vvhu had cheated. The only cornnHm tht.l1 tbcy vv~re all Yt.Hlng and scxunHy .;:ictive and staye,l uway lrom home k1r several duys clJa,;ing weEil!h and pres 1m1 ably using it
C~!Drt.1cterisLic .the victin1s had \Vas
generously for their recreaUun und rnerrilncnr .1G
,'\cmss the border in Tclor HI Rakm dtslrict believed that his uncle had died of rhe disease in 19110. The . _expatriate speciaiisl later thought he had seen the corpses of Aids VJduns Ill Kampalu ir' 1979 or 1980 Tl l t·1 1e evidence , _: . . a 'eu as a w Iwe, suggests . , . 1 tl,dt Ill!\ enteted the: rcgwn dunng the J 970s and became epidemic in the 17 cady l9Ktb. Local !'>CU(Jle called lhe n',IV v tlr· sc,ase 'c']' "' 1m ' l)ecausc wasting was commonly ils most Fisible symptom. 'lu the lirst six m,mtJJs,' Dr reponed J!,om Rakai in 1984, rhe patient e.\_perienccs genefal rnabise, and on-JtHl-off 'fevers'. For vvhkh he 1nay be· treated 'self' or othe1 wise with Aspirin, chloroquine and chloramphelllcol etc, In due CfHH'St.:, the patient devdops gradw.d In-s ...; of appetite. ll. In lhc next six months, diardwea appears on-and-oiL There is gradual weight loss and the pattent is pale. fvtost patients at this point in time will rely CHI traditional healers, ;::s the diseuse tv rnany is at1ribuled tu \'•Jitd1crafL
~.:L Afh;r L)~le. y~ar, the patient develops a skin disease 'iVhich is very itchy. c:pparenily 11 IS all over the body. 'fhc skin bccomcs ugly with hyperpigmcnted scars. 1 here may be a cough usually dry but or her rimes productive. IV. Earlier on after a )rear, the patient nwy be so weak that even vvhen taken tu hu~pi1al (not iThJch can be done dut: to late reporti11g;, goes into chr\micity a 11 d
death.''
Llke I he [()cal people, Lwegaba blamed Slim on the young ibhcrmen and smugglers who had !locked to the lakcslwrc lo exploit the Nile perch fisheries and the Jlla!Jelldo economy. 'Since began,' an inves1igaior noted, lclnpnrary li~[:ing camps of grass huts and sht~ds have growu up seastH1tliiy on the lakcshure, wnh predominantly male popula!ionc;, Miile labour relies, tor food. drink ~tnd 6CX~Eil serv.ices, on cafes, teashups, and bars. tdrgely run by Vl.'orncn. Each carnp IS assocwted \VIth particular f~1nnlng connuuniUes. which rnay be at a distance of up to 15 kilometres from the shore.''
24 Tile Drive io ilw East It was probably in l.hese Hshing camps and neighbouring villages that partner exchange reached the frequency required lo raise lliV to the eprdcrmc levels elsewhere f{mnd only iu lhe urban environments of Kinshasa or Krgah. Fifteen years later researchers studied such a fishing community in Masaka district.. Its men had on average one new sexual partner every twelve Some 4J per cent of their partners were regnlar and 59 per cent casual; 8 S per cent were contacts within the village, 8 per c:ent in other !bhing villages, and 6 per cent in the nearby trading town. The village women, m turn, had 90 per cent of their sexual contacts with other villagers and 4.2 per cc;nt wHJ: casual, puying clients . Such promiscuity was highly localised, so that fHv prevalence in dilTerenl parishes o[ the district in the mid l':l90s w<:s to range from 4 per cent to 20 per cent. 'fi is our mating patterns tbat are hmshmg us off,' a researcher was told. _. , . Although this epidemic began in the cuuntrysidc, the dri!iculty nl transmitting fHV makec> it likely that it would have died away if it. had not been carried to more open sexual networks in trading centres, the caprlaL and eventually !be entire Ea;ot African region. The rcsearchers in Masal<.a fm~nd surprisingly little sexual exchange between village and town. but they did find that sexual acth·ity varied enormously between individuals. 2 ' lt was perhaps hyperactive and mobile individuals who transmi~tul HIV to the main-road trading centres where it next flourished. ln the J\<Jgera regwu, for example, the virus appears to have been carried frorn border tradmg posts to mland commercial centres like Karnachumu, long a focus of coftee marketing antl politics. Thence it spread to the regional capitaL Bukoba. By 1987 prevalence among those <1ged 15-24 was 24.2 per cenr in Bukoba town (reachmg42 per cent in its lowest-status section) and ] 0 per cent in the neighbouring Bukoba and Muleba rural districts. 22 Once the virus was established in trading towns, workers carried it hack to hitherto unatl'ecled villages. ln the Kagera village studied by Gabriel Rugal em a, for example, Aids was introduced in 198 7 by 'a woman with an unstable marriage who worked part ·time as a commercial sex worker in Rwamishenye (a suburb of Bnkoba town). She came back to the village after she had been weakened by inrections and died a few weeks later.' Another 1 8 women and -11 men died there during the next mne. years: A rnajority of the rnen vvho died \vere involved in ofi-farn1 iHco1ne generatinn,
particulariy those who had worked as itinerant
tr;~ders.
Others included carpenters,
nwsons, and casual labourers ,.. Only six of tho: deceased rnen could be stnctly classified as fuliAhne fanners.. As for the \VOLnen, the rnajoril.y of the deceused
were, as may be expected, full-lime farmers."
In Hakai district, similariy, a computer simulaHon suggeststhat lhe annual incidence of new infections among people aged ) 5-24 peaked in 198 7 at aboni: 8.3 per cent. 1 ·' Two years later, prevalence among men and women aged over 1 3 varied fl·om 2 6 anJ :± 7 per cent respecrively in main road lr.ading centres to 22 and 29 per cent in local trading village and 8 and 9 per cent in agricultural villages. In 1990-2, 3J per cent ol all households in Rakai district contained an infected member. The worst impact was m the truck-stop towns along the trans-African highway berween Kampala and Kigali, notably
LjiHitur~d:,
The Drh•e !.o tile lla~t 2 5
where IliV was lrJtmd in 67 per cent of the bar girls tested in l'J86 awl lil ::>:>per cent of the en1ire adult population in 19()9." Tbe prominence of the trans-Album was one indication !hal the C[llllenuc bad by t!tc mid 191>0s spread far the west hike region. Three caL:gones_ ul mobile men appear to have rMricd it. One was the . , . (;eneral Amin's soldiers retrevere Ird~;;cted by bar girls ili their ove;rnight stops in towns like Lyantonde. llnc; study ol hS drivers in Kampalu in 1986 reported thc) pam unm:, a in the remote south-west of Uganda reported in I 99], _'it is still the returnees to Bu!umbira thai introduce thb deadly disease mto the population which otherwise knows no promiscuity. the returnees are also counted the taxi drit·ers and the 29 drivcrs.'
1
Kampaht held a special position. Jn retrospect, ils main prison may hnvc held cases as early as 1979 or 1980, when patienls with aggressive Kaposi's sarcuma abo appeared in the main MulagoHospital, soon followed by others wllll the chrome d1arrhoea and wasiing of Slim disease."' Nobody linked these mleclwns to the emerging A.ids epidemic elsewhere in the world until !ale in l91i'L by which time HJV was already entrenched in the city and spreading rapidly, It all started as a mmour,' the chief epidemiologist later reflected 'Tlwn we l'onnd we were dealing with a disease. Then we realised that it wa~ an epidemic. And, now we have accepted it as a tragedy.' 31 Studies of prevalence: among pregnant women in showed 11 per cent in 1985, 1-1 per cen,[ m 1986, 24 per cent 19157 -then the in the world l:utsrdc, I~igah-: and a peak of over 30 per cent in l98':l.' 1 Notably, however, Kampala s epll!emiL was not focused on a core group of sex workers and their dienis, in t"onlrast to other East Albcan cities. There was littie association lJetween iH ~ mk:clion and commercial sex, which was unorganised, diverse. ill~t.;'d: and impossible to distinguish from other scxuHl involving grfts." Instead, Kampala's sexual pattern was closer lo Kinshasa's, with more young women than young men, scxnal debut at an average age of l(JUrtcen Ill [!ganda generally in 1989, 69 per cent of men and 7~1 per cent of women aged J C.-19 having sexual experience, a rising age at marri~ge, and many
2 6 Tile Drive t.o 1/Je East young women whose on gifts from male lovers accentuated by the economic disorder of the l9'70s and !Y80S 31 It was a pattern vulnerable to IUV but capable of change. . .· .· . . . .. . . . Although reports of a nnvel disease in Rakai reached the authonnes m 1982-3. was then in the midst of civil war and no action was taken until Lwcgaba's report coincided late in 1984 with laboratory evidence tha,t patients at l\Iulago Hospital vvi!h sarcoma were m!ectcd wrth !Hv. JVlilton ()bole's government, then in power. ordered an investigation. A team visited l'vfasaka,-conducted examinations at Mulago, and concluded that Slim was 'part of the spectrum' of Aids, although with . . symptoms to East Africa. Ruling out transmission hy c<Jsual or md1recl means, the researchers blamed heterosexual transmission, and blood transfusion, estimating that Mulago Hospital might be creoting two new cases each day. lllV-positive patients at Mulago reported on average twice as many sexual partners as HIV -negative patients. Anot~wr risk !:1ctor was a sexuaHv tran,;rnilled infection. especially ulcer drsease. . (Joa; 1da's HIV epidemic appears to have peaked in 199], when 21.1 per cent ~Jf women attending antenatal clinics tested and some l,200,0UO were thouoht to be infected. 16 By then the virus had reachn! alrnosl all parts of Eao>t AliJca. In Tanzania, the area first affectcJ after Kagera was probablv Dar es Salaam. An expatriate may have contracted the disease there as early as 198(L but the Jirsl firm evidence was a . of nearly .2. per cent in stored blood collected from pregnant women and hltJod donors m 19/H--5. Thereafter antenatal prevalence in the city rose io 8.9 per cent in ] 989 and 14.8 per cent in 1997. 37 The di>:ease was introduced trom Kagera, perhaps by returning soldiers but more by Haya sex workers and bar girls from the region. who had been prominent throt~ghout East Afnca since the interwar period, driven perhaps by male control ot land and mcom.e in a highly commercialised region. By 1'.186, 29 per cent of Dares Salaams bar girls had HlV, with a prevalence of 3 5 per cent among the 3 3 pe~ cent ol them who came from Kagera. Two years later, 60 per cent ol notmed AJds patients in Dar es Salaam originated frorn Kagera, many of them no doubt seeking tr<:atment. Of Tmuania's first 21 notilled Aids cases, 60 per cent of males nnd 46 per cent uf females said that they were hetenJscxwJlly promiscuous. Yet this initial sociul . was soon obliterated ~y. the epidemic's expansion. Wben women at family planmng duucs m Dares Sc.luum were in 19'11--2. there was still a positive assoL~iation between HJV infection and number of sexual partners, but even infected women had a median of only two partn~rs within the previous five years. while married, women claiming fidelity to husbands had a greater nsk ul infection jf the husband had not been faithful, a risk that increased wtth the V\Ioman ;j o\lvn c:ducatjon and her FJ Dar es Salaam was a thousand kilometres from Kc.gera and almost as remote from Tanzania's olher borders. yet by Augusll'J86, less than twll years afrer HIV was recognised in lhe its main hospital had admitted cases from each of mainland Tanzania's twenty regions. Some were probably infected from Dar es Salaam. ln l 'J88 the highest afler Kagera, 1
The Drive to !lie Eust 2 7
was in lringa region m1 the Tanznm road linking the capital to Zamhia.1o CHhcr areas, by contrm:t, acquired HIV by cross-border contact. In tbc south·western Mbeya region, for example, an explosive HlV and tuberculosis of H!V-l, epidemic between 1986 and ll)<J:l was caused by the C pmbably introduced from Zambia to the south and most prevalent ilt the burder and in urban and roadside locations. 4 ' Mwanza region, south of Lake Victoria, was probably infected from Kagera, but Mara region, on the eastern shore or the lake, appears i.o have shared the severe epidemic in the neighbouring Nyanza province of Kenya. In the Kilimanjaro and Arusba regions of northern Tanzania the disease was blamed on young. mubile traders rdurning from Kagera, Dar es Salaam, and Kenya. As everywhere in the continent, !.he epidemi,: there took its shape from !.he structure of the commercial economy, wilh a focus among urban bar girls and seA workers, high mh:ctwn among young adults driven from fertile mounl.ainsidcs by laud scarcity, and prevaknce declining as the disease radiaied out into the countryside. In Arusha region in 1992, for example, adult intection was 10.7 per cent in the poorer paris of lhe regional capitaL S.2 per ccnl in tile wealthier parts, 2.2 per cent in semi-urban areas, and 1.6 per cent in the countryside, where at this time the disease was slill seen as a comnlaint uf despised urban aliens.'' 2 Because H!V entered Tanzania from all directlons, ihe Clltmlry , had an unusual . diversity of subtypes and unique recombinant fornb . ·" 1'weuty-!ive years aller ils first appearance in Kagera the disease was sllll spreading into remote parts of the country. \Vhile the link from the west lake &'Pidemi~ to Dur es Salaam was strong, t,hat to Nairobi and the Kenyan epidemic is no more than probable. Kenya's hrs! Allis Cdses were concentrated in three locations: Mombasa on 1be coast, Nclirobi in the centre, and the Nyama province on the eastern shore of Lake Victoria. Any of these may have infected the others, or each may have been inl(;dcd separately. If HlV rc;ached the two cities directly li-mn west of the lake, the main link, as in Dar es Salaam, was probably women kom Kagera prominent in low-status sex work in Kenya since the interw
2 8 Tlw Drive to 1he East wife in the city."" vVeallh and poverty vvcrc sharply with little education seldom found formal jubs. The result wds overt, mercenary style or cornmercial sex, especially in the district, where a community of over a thousand sex workers, Kagera, sat outside their rooms waiting for brief encounlc:rs with working men at a price of 30-50 liS cents. Each averaged nearly a thousan'l partners a year, working only by day because the night was too dangerous. ~>ullie '12 per cent had genital ulcer disease. Study of their clients in 1986 7, when the epidemic peaked, found that 8 per cent contracted mv from them and thdt 96 per cent of infected clients were either uncircumcised or had genital ulcer disease or both. Five years later, 76 per cent of women in Nairobi scekmg treatment for a sexually transmitted disease reported only rm~: partner during the previous three months and had presumably been infected by him, indicating the potential for transmission to the general population. HlV prevalence al Nairobi's antenatal clinics may have peaked in 1994 at about 17 per cent. Four years later over 40 per cent of new HIV inlections were thought lo come through commercial sex." The sex workers themselves sufkred terribly. Nearly half of those hitherto uninfccted contracted HIV each year. They then generally developed Aids within about half the normal time, owing to multiple infection or other sexually transmilied diseases. danger was discovered almosl accidentally in 1985 during a preliminary survey of sexually transrnitt.ed diseases. \Vhen astonished researchers told sex workers that two-thirds of the 60 tested had IHV. they mel 'stunned silence'. Only live wanted to know their personal status, although most quickly adopted !he fi·ee condoms pressed upon them. '\Vhen one gets beyond the initial prejudices and stereotypes,' the oroanisers wrote, 'one finds the prostitute knowingly risking AIDS, sacrilking 0 ' ,~) her own hopes for the sake of her children or brothers ann sisters. '' The explosive epidemic in Nairobi almost monopolised attention in Kenya. so that little is known of HIV elsewhere during its first decade. Perhaps misleadingly, the coast region reported tbree times as many Aids cases as Nairobi in 1991, the great majority no doubt in lvlombasa. where 54 per cent of 3,628 sex workers tested positive between 1993 and 1997 and adult prevalence in 2000 was lll.8 per cent. 51 Elsewhere prevalence during the early 1990s was relatively low, except in towns along the trans-African highway bet ween Nairobi and the !Jgandan border. In l 99.3 both Nakuru and Busia reported higher antenatal prevalence than either Nairobi or 1Yiombasa. From the mid } 990s there was also rapid growth in the Central and Eastern provinces around Nairobi. Kenya's adult infection rate probably peaked <Jround 1998, offlcially at 1 3.9 per cent although the true mark may have been substantially lower. 5 2 Kenya's anomaly was the Nyanza province bordering Lake Victoria, which experi~nced an explosive epidemic that is perhaps the least understood in Africa. The earliest infections may have come across the lake soon after the epidemic began on its western shore, for between 1986 and 1993 Nyanz;; reported 15,605 Aids cases - 31 per cent of all Kenya's cases -- implying widespread HJV prevalence in the early J 98Us at leasL By 1993, prevalence
The Drive
10
the liust 2 'J
a! aut.:natal dinico; in Kisumu, ' the reuiurtPic"l!JI·t· 1! \'i'JC 7() per· . t·. · · . -·o - -'- ·''- , ·• ~cen alHl riSing 53 <JUH!,ly. fn tbe absence ol dewiled lhe best explanation of this cpt·c·lemiL' sugg• .:sts a combination of drcumstarJ''es '.·r· , - 1 • -. - ._ · ~ v U Sf:d0e e ~C\1VIH.?re but seldom )omed in one place. One was parlicipaUun in lakeshore ' :·illtirre. 'The beaches attract a continual inflow of people,' it was reported: , ~'oung men ll1 pursuit of an easy cash income and women tire meu. [hey, hvc .O~Its1de _the traditional social structure and subsistence fanning lwu~~buldo, dlld d1 mkmg · cas>ml sex , theft ' fi'fV 1' 1 ·\-l.llS an j ! · 1. 1 ·1 • · , l 11g 1 uem 1 rates among young. men are common.' Nearly half the ad nils in these area:; may have been mlected by the early 20UOs. 51 Equally vulnerable were youn" pc~lplt: w,!lh casn1al jobs on sugar plantations and especially on the li'inges ,~· ~lrv tranoport mt,ustry, for Nyanza. straddled the trans-Alhcau highway and IWdJts own n:otor tr~mspod network. Its dense rural populaHon, linked l", tLe urba.n focus oi infection in Kisumu. bred rural prevalence levels among aoults rc:a,'nmg 3tl or 40 per cent in the 2000s, while scarcity of land andlack ot rural opportunity perpetuated migration to Kampala, Nairobi, and Wtlrkplaces throughout Kenya, where Nyanza people often had exceptiondlly b:gh rates ol lHV." ••••
{_L)
c
The social organisation of the Luo people also contributed to the epidemic. O;H: study attnbuled over half their infection !o the fact that some 90 per cent :,n_l.u~ me~J, tmlikc most Kenyans, were not circumcised. Their society was Tn mtcrvwvvs at clinics in Kismnu in ~'!()()(). . "''t·l, r.s(, ongly . . . patttdrchal. ,l ", ·. . ·Lr···) , l( unnmg tl per cent of those questioned, men reported unprotected sex with ·werage ol l L2 partners, womcn\vith 2.5. H is not clear whether these 1\ otuen mcluded sex workers, but they numbered an estimated l 4ll() · 111 K' · · . · 'Y9~ . · · · ·· ' rstmJu Ill.' .. - 1-.-8 and 75 per cent of them were lHV-positive."' 1\;lany were . . thvorceu or separated women with li;w other opportunities in J.uo S.llloila!Jon oJ W<:men .. The problem in Ethiopia, however, is nut, as in Nyanza, vvby au cxkrbrve epidemic took place, but rather, as in pre genocide Rwanda, tb,; epHlenuc was not more extensive. This may seem paradoxtcal, for in the 0
,
_
-,
..._
30 The Drive to the East early 2000s about 1,500,000 Ethiopians had HIV. Yet that imp~ied. a prevalence in those aged 15-49 of 4.4 per cent, only half the proportiOn m Tanzania and two-thirds of that in Kenya. 60 One reason restricting the epidemic was that HIV re~l}ed Ethiopia somewhat later than the other eastern African countries. The 1frst two cases were diagnosed in Addis Ababa in 19 8 6. Retrospective tests on sto_red blo_od revealed one case in 1984 and another in 1985, but none ,m earher specimens. Analysis of the diversification of the virus suggested that it had arrived in 1983. The virus itself, introduced at least twice, was subtype C of HIV-1 in contrast to the A and D subtypes dominant in East Africa. How the subty~e mainly found in southern Africa and India also reached Ethiopia is unknown, but its complete domination of the epidemic - in contrast to the diversity of subtypes in Tanzania - suggests not only Ethiopia's isolation but a rapid saturation of a core group of vulnerable people from whom the infection spread to the wider population. 61 . The core group were the sex workers of Addis Ababa and other maJOr towns, together with their habitual clients. Founded in 1886 on the m?d~l of a military camp, the capital was a sprawling jumble of permanent bml~I~gs and the squatter shacks in which over four-fifths of its nearly two m1lhon people lived. Women were a majority of the population, especi~lly in the younger age ranges, for Ethiopian women married very Y?ung, divorce ~as common, and there was little place for unmarried women m the countrysi_de. In the town such women survived chiefly by informal activities, of which commercial ~ex was one of the nwst important. In 1973-4 an Ethiopian sociologist reckoned that some 27,000 women worked in bars. the chief meeting places for the city's men. An official survey in 1982 identified ~5,900 full-time sex workers in the city. A less official one, seven years later, estimated 24 825 excluding streetwalkers and women working from their own rooms, . .that 55 per cent had only one or fewer partnersper week .62. n·Ivorce, adding disagreement with parents, and lack of money to contmue schooling were reasons often given for entering commercial sex. Major provincial towns had smaller but similar groups of sex workers. Commercial sex had a role in Ethiopian urban culture similar to that in Kigali. Female virginity at marriage was vital to respectable fam~lies, if perhaps less so to their daughters than in the past, partly because marnage ages were rising with education. Men, by contrast, suffered little inhibition on sexual experimentation and on average (in 2000) married seven years later than their wives. Given this imbalance, as in Kigali. young men co~monly had their first experience with sex workers and up to half continued to frequent them thereafter. Early in the epidemic most of these sexual enc~unters. were unprotected, for Ethiopians were unfamiliar with condoms and_ h_osttle to them.63 Sexually transmitted diseases liable to facilitate HIV transmissiOn were common, especially among sex workers. A study in Addis Ababa, in the early 1990s found that only 9 per cent of women in their first marriage and 1 per cent of sex workers had no serological evidence of such a disease. while 3 3 per cent and 46 per cent, respectively, were infected with HSV-2. _wh_ic~ caused genital ulcers and particular susceptibility to HIV. Moreov~r. EthiOpia s
The Drive to the East 31 health services_ were slende1: even by African standards, taking only 0.4 per cent of the nat1onal budget m 1999 and providing fewer than 20 per cent of pr~g~ant wo.men with antenatal care, as against an average of over 60 per cent m sub-Saharan Africa. 64 HIV first became established in Addis Ababa among sex workers during an explosive epidemic in the late 1980s. In 1987, 5.9 per cent of them tested positive; by 1990 the figure had risen to 54.2 per cent. Prevalence was especially ~ig~ in city centre brothels. By contrast, in 1989 only 4.6 per cent of the capitals pregnant women were infected. 65 Other places of very high prevalence among sex workers at this date were the trucking towns of Dessie, Nazareth, Mekele, Bahr-Dar, and Gonder on roads radiating outwards from Addis Ababa. In the far north, however, the disease was still rare, although it had penetrated to all parts of the country. Study of 23 towns in 1988 showed an average prevalence of 17 per cent among sex workers, 13 per cent among long-distance truck drivers, but only 3. 7 per cent among blood donors (who h,, '"dl~ represented the general population). 66 Among the latter, rapid epiderm~ g~owth began three or four years later than among sex workers, the annual 111Cidence of new urban infections peaking in 1991 at about 2.7 per cent. Prevalence among antenatal women in Addis Ababa rose from 4.6 per cent in 1989 to 11.2 per cent in 1992-3, reaching its likely peak of 21.2 per cent in 1995.67 At the same ~ime, the ratio of infected men to infected women in the capital fell from 3.7:1 111 1988 to 1.5:1 in 1994, suggesting that an epidemic that had begun among a core group had spread to the general population. In a study of 2,526 factory and estate workers in and around Addis Ababa in 1994 HIV infection in men was strongly associated with reported sexual behaviou; and past history of syphilis, but in women it was associated with sociodemographic characteristics (low income, low education, and living alone) rather than sexual behaviour. Moreover, the burden fell increasingly on young women. In 1995, antenatal prevalence in Addis Ababa was 23.7 per cent among women aged 15-24, 17.7 per cent among those of 25-34, and 11.1 per cent among older women. In Dire Dawa, a railway town east of the capital, 57 per cent of all infected women in 1999 were aged 15-24. 6s Ethiopia's urban epidemic ceased to expand during the mid 1990s, although numerous new infections continued to compensate for the rising number of deaths. The missing element in the story, however, was expansion to the countryside, for the remarkable point about Ethiopia - in contrast, say, to Nyanza - was how little impact the disease had made in rural areas where estimated adult prevalence was 0.3 per cent in 1990 and 0.8 per ~ent in 1995. This was partly misleading, for such was the predominance of the countryside in Ethiopia- 83 per cent of the population in 1999- that rural infections overtook urban from 1997. Yet rural prevalence in 2000 was still only an estimated 1.9 per cent. It was highest in the central Amhara region, but 111 the remote Southern Nations Nationalities and Peoples Region, at that date, only 3 7 per cent of women had even heard of Aids, although the impact grew rapidly thereafter. 69 Rural people, there and elsewhere, blamed townsmen and foreigners for the disease: 'We Hamar don't have cars with
32 The Drive to the East •l ·1 'll to reach America. We don't go to England, to
[highland] country,
\\ l Germany, " · ·· · ... it cornes to am] going there, we Jon 't come b ac k· •Drmgmg l11 nes.,. A
to us by foot.' 70 . . . • . . . f . . . '\s in Rwanda and Burundi, it is difficult to explam the weal,ness. o urban-rural transmission of HlV in Ethiopia. during the 1990s. One elen1c~~~ nnv lnve been the dispersed pattern ol rural seulemeQ!,/ tlldt lumt~, iH~~ract~on. Studies of the extent to which farmers lruquc.~tcd sex wor~ers Ill market towns found inexplicably varied proporlwns: ..• ~\s. m R :\ ~ndd, · 1 VIS! · ·t·' ,n · i g>h"' do little to· spread a vrrus so rhftiLu!t to TlITdU>llllt occaswna . · . 1 1 ·t•. , . ·ciallv in a culture with ncar·universal male circumcrstorL ; 1e 111 ': study, of a Muslim area in eastern Hararghe,conduded ,. , prot"ct·d from infection by its Muslim social order. aud ns lac:k uf exposme v. as "·" · 1· ! t · t 'V'lS the mcst to high·preva!ence urban grm?s. Perhaps t us .. as· IJ.'~lll ,~. . . . t 'l'l1e'Il'l\'! opidermc eastc.rn Ah!Ld had1been. sl.~,.,ptd mJfJortan ·. 1 n·'r'cls •· · · lbroughou.t · ' · b/ the ~dwork of communication provided by commercia econot~le,s. Vigorous around l.ake Victoria and along the lrans-A!ncan . _ r ., ,hey were less integrated in Rwanda and Burundi or the emplmess Ch ':"l.1tr:1l Tanzania. The particular weakness of its commerCial economy had shape(] , ·b of Ethiopia's modem history, notably its uncompletcc! revululwr~. Nuw HhlL · · countrysl · 'd e aga !1St m[·· "tlUP, the same circumstances helped to protect its I · · . .::L
~l~~~iled ~rural
th~t
5
The Conquest the South
:t
.' '·,, . ',
r r h e countries of southern !\.lhc<J, infected with l-HV later than those further north, nevertheless ovcriook eastern Africa's .
. levels ol prevalence dunng the nlld J 990s and then expenenced the W(Jrld's most terrible epidemic. By 2004 the region had 2 per cent of the world's population and nearly 30 per cent of its IIIV cases, with no evidence of overall decline in any national prevalence, which in several countries eXL·eeded 30 per cent uf the sexually active population. 'fhe chief issue in sou!hc:rn Afric<, is therefore to explain the speed and scale of epidcmk growl h. Tile obvious explanation is the of whire domination and the dramatic economic and social inequality il had wronghl. The view here is that this is true, but the connections were not obvious. while, as everywhere in t\li"ica, the scaltc of tl!e epidemic vvas due lo the long incubation period !hal enabled it to spread silently beyond of rapid suppression, By chance, both the earliest definite indication of HfV in southern i\Ji'ica and the best evirlencc of the silent epidemic anywhere in Uw continent come l!-mn the remote rural district uf northern Malawi, bordering Tanzania and Zambia. Karonga's people, famed in colonial times for their education received from Scottish missional'ies, had migrated as clerks and cndbnwn throughout the industrial centres of southern Africa. This may Jirst have exposed them to H1V. The virus't; arrival in Karonga can be traced because the district experienced a mass campaign against and tuberculosis that included two total population surveys, in 198 J. -4 and 1 98 7· 9, each of which look and stored blood specimens fi'llln everyone in two sections of !he district. All 44,150 specimens have been tested retrospectively i(Jr HlV, all hough only lhose !!-om people aged 15 ~49 are included in the calculations. The n:~·'' :1' give a unic]uely detailed picture of the dym1mics of a local epidemic.'
In the lit·st round of invesligaliun, none of the 1,041 specimens taken in
1981 had lHV. Four infected specimens were !a ken in l 982, one in 198 3,
and six in lLJ84. making a total of eleven ill 12,979 specimens, or less than were recent arrivals In
O.l per cent. Four were 1nen and seven women.
33
, T'II<' ComJtWSI of' . tl · lc, So!ll.h 35
34 The Comj!ltsl of- 1/w. __, JO!il " Il
·..._"-,
f!J Nchalo
"o;t;~!Z~ti-
--
ovAt.ABOLAt1D
/ @''lindnoek
ATLANTIC OCEAN
Map 3 Soulncm , Africa
Maputo
INDIAN OCEAN
3 b 'flu: Colli[l.teSt of' the s.mth the district: four frorn other parts of Malawi (including the main city, two from Tanzania, and two from Zambia. ~~ot only was the disease brought h"om several outside sources almost simultaneously. bnl sever<Jl different subtypes were introdnccd. The two arrivals from Tan:wnia brought subtypes A and 0, the LWO forms dominant in East /l.frica. or the other nine specimens from this six were later sublype C, while ilw other three could not be positively identiiied but were to subtype C and an extinct variety of it. Of the six individuals definitely identified with subtype C, one came !rom Zarnbia, two had been born in Zambia bnt had lived in Blantyre. two had come from elsewhere in Malawi, and one a lung·tcrm resident of Karonga. Subtype C was to dominate the southern i\lhcan epidemic, causing some 94 per cent of infections there in 2001. 2 It may bave originated in the southern DR Congo, 1 which hud many Jinks with neighbouring Zambia, through the mining towns of Katunga and the Zambian Copper belL A reconstruction, compatible with evidence of early inf~clion elsewllere in 1\Ialawi und Zambia that will be quotcd Iuter, is lhat eiements of the East Ali'ican epidemic (subtypes A and D) spread across the border into rural Karonga. but that the bulk of infection (subtype C) wus carrit~d from the southern DR Congo into Zambia. prubably tirsl to the Copperbelt. spread to other urban centres (including by 1983, and was carried from these centres inlo Karonga. Something can even be known of rhc process of' infection. Of the six specimens with subtype C, four were so clo;;dy related genetically as to form a single cluster (cluster l) with a single origin. One of the four was the long-term resident of Karonga. The other three had come from other pariS of Malawi. The most likely scenario is tlwt one person introduced the strain h'orn elsewhere in Malawi and infected the other three aftc.:r arriving in Karonga, although this cannot be certain. . . Cluster 1 becomes central when attention shifts to the second ronnd ol blood collection in 1987-9. This revealed not 1l but 189 HIV-posilive spC'cimens, a prevalence of 2 per cent. Of the 168 specimens rbut could be analysed by subtype, 152 (9ll per cent) belonged to subtypeC.6 to D, 3 to A, 3 were unclassified, and 4 were recombinants. Not only hud subtype C established itself as the dominant form, but so had cluster 1: 40 per cent of those wilh subtype C ( 61 people) were infected with variants of that strain, probably illtroduced no more than five or ten years earlier by a single individual. Nuthing could illustrate more vividly the explosive potential of a virns whose existence in their bodies was almost certainly unknown !o most of those harbouring H. The duta collected in 1987·9 reveal rnuch more aboui HfV cnmt~mroru~ in Karonga. A majority of those infected were women, with an especially rapid increase in the late 1980s among women aged between 15 awl .24, whereas men with !UV were older. Some 8 7 of the l B9 infected had not been nresenl in the disirid in 1981-4, divided between 48 returning absentees ~and 3'.! new immigrants. Clearly the epidemic was still driven chiefly by mobility the district. Prevalence increused with years of schooiing und was most common among traders, salaried empl. , ·es, casual
The
Co!l!Jllest
of the South 17
laL·ourers, and generally !hose who were not peasant farmers. Those with the bc,,t and the worst housing had higher prevalence than those with houses of in~~rmediate quality. Of eighteen couples in which both partners ~ere mwded, only twelve were in!Cctcd with closely related viral strains. Most intriguing was the dominance of C, t(Jr one unanswered question abont the epJdemJc rs whether this subtype, which by the 2000s was rcsporrsible . fc'.r more than half the world's f-HV iufections, lwd greater evul.monary htness than other subtypes. Despite much research and several detailed difl(~rences in its mode of operation, no conclusive evidence of this had emerged by 2005, although one study had shown that viral conccntral ions were more than three times as high in the blood nnd semen of l'vlalawian men, over 90 per cent of them with subtype C, !han in Americans with subtype B 4 Al_though the dnta from Kanmg<J are uniquely detailed, it was clearly not the tJrst pan ot Malawi to experience HlV infection. Study of stored blood !aken in soulhcrn Aldca before 1974 has revealed no evidence of HlV, but the first 1 7 Aids cuses were reported from Malawi's hea!lh !'acUities in ]98 S, some wilh aggressive K;:,posi's sarcoma, and a year later nearly 4 per cent of Maiawian mineworkcrs in South Ali··ica wure HIV-positive, the onlv na!ional group from Central Africa significantly illfccted. Civen the long incubation perwd bdore the appeamnce of symptomatic Aids, and given the wide extent nl IHV infection evident by the mid 1 980s, Malawi's silent epidemic probably began belore 1980, or only slightly aHcr HIV can be discerned around Lake Victoria. Census data show that mortality in Malawi increased significantly between 19 77 and 198 7, but chielly among children, who commonly died of Aids mor··. >uiddy than adults. 5 The Vllcls may have reuched Zumbia slightly earlier thnn l\falawi, allhongh rhc cv:dence rs mdrrect. In 1983 !\nne Bayley, a surgeon in Lusaka, J(mnd hcrselll treatmg unprecedented numbers of young adults afflicted with aggrGssive Kaposi's sarcoma. \!Vhen tested in 1 Sl84, y-J per cent of these were found IHV-positive. Bayley later thought that the tlrst case might dale back to 191l0 and that HIV had probably reached Zambia in tbe mid 1970s initw.lly spreadin~ slowly. She added - a conclusion presumably reached b; rc!rdsp~cllve testmg - that in l 'JH I fewer than 1 per cent of women at. Lus;,ka s untenatal clinics were HIV-infected 6 Many eurly patients in Lusaka with Kaposi's surcoma had assoc~iations with the Copperbelt, where tuberculosis cases suddenly mulliplied from 1')8'1 alJd !he llrst. small HIV !csts in the general p>::pulation of mining commtmities in 198 5 showed l.LS per cent prevalence m males and 21 per cent in females. Of deaths lhnn Aids reported lhJm Zambia between March and July 198 7, 4h per cent were from the Copperbelt and 18 per cent Jiorn Lusaka.' Yet the siiu~tion in the capital was, alannmg enough. li1r tests there in l 98 5 showed that 8 per cent of pregnant women were inJected. ln February 1986 Aids patients were also dying in Livingstone on Zambia's southern border with Zimbabwe.' In reality, the silent epidemic had penetrated Zimbabwe some lime bci(Jre, although perhaps three or four years later than Zambia and Malawi as the viru;; was carried south1.vards. The first cases of !\ids and aggressive Kaposi's
3i:\ l'hc Conquest of tlie Soul. II sarcoma were in 191i3. Alarm arose only when blood was lirst screened in 198 5 and it was revealed that over 1 per cent of donors had HlV. Infection then concentrated in the northern city of Harare, with only 0.05 per cent of donurs testing positive in Bulawayo, further south. Thereafler, however, expansion became general and rapid. t\t the district hospital at Hurungwc in /l.lashonalaml West, the aunual number of patients diagnosed with HlV rose bet1veen ] 986 and 1988 from 16 to 2CJ2. In Manicaland province, on :Zimbabwe's eastern border. <Jll distrj;<:ls recorded increased mortality from the late 1980s. By l ':!90 n<1tional antenatal was 12.9 pc~r ccnl. 9 Botsw<Jna W
Th,: Conlluest o{ the South 3 9
clinic atteuders in llararc. PrevalenL:e <Jmong them was l 0 per cent in 1989 and 18 per cent in 1991, both ligures subslantiaily less than in the main cities of Malawi and Zambia, but it grew further tu a peak of 32 per cent in 1995 and then fluctuated around that level. Yet only 28 per cent of Zimbabwe's people were urban.'" Tl1e dbtincLive feature of its experience during the 1990s was I he high level of prevalence outside lhe mdin cities, often so higil that tbe statistics must be treated with caution. Three kinds of areas were worst atfeded. One contained lowus on maiu roads close to borders, where truck drivers might sucialise for several days while negotiating !heic way across the froulier. Reitbrirlgc, on the South African border, recorded S9 per cent lllV prevalence in ! 9Y6, while the ligllfe at Mutare, near the frou!ier with M,;zambique, reached 37 per cent in J 997." Second, the routes cuntributed to high prevalenc:e in province~ and districts through which they passed. Masvlngo province, >>~'hich registered a barely credible provincial tigure of 49.4_ per cent a1nong pregnant \VOJnen in 2000, \Vas bisected by the road
from Har<1re to South At'rica. while Midlamls province, with a reported .f 5.1 per cell! ,. ' 'alence in 2000, straddled the route !rom Harare to Buluwayo. 16 Yel this ,Jevastatiug provincial infecrion that disiinguished Zimbabwe was not L:onllned to transport routes but existed even in remote rural areas. ln 1993·-1 ovt;rall adult prevalence was already 2'1 P"r cent in ihe Honde valley, a fairly Isolated part of ManiccJland. Shortly thereafter, 22 per cent of pregn,mt vFomen tested lf!V-positive even at Tsholotsho in arid northern MatabeleLmd. As will be seen later, bur h its excclltont transport sysrem and its high levels of uscilla!ing migration between country and town made rural i:illlbabwc especially vulnerable 10 infection. Those charadcri.stics operated even more pnwerfully in Botswana. From only 2 c!r 3 yer cent. in I 990 ils national adult prevalence soared to 23 per cent m 199'> and eiU1er 2S per cent (according to the government) or 3f, per cent (according to UNAIDS) in 2000, the latter figure being the highest in the wurldJ' As the epidemic sptead soull1, its momentum seemed to accelerate, suggesting the possibility that rapid passage of the virns liorn person to person might be increasing its virulence, although there was no hard evidence of this. The acceleration in Bolswana was notice,! first nol 8( tl1c capital, Gaborone, bm a! Francistown, >vhere the main road crossed into Zimbabwe and anlenatd prevalence reached 24 per cent in l9Y2 and 34 per cent in 1993. Gaborone soon followed, as did the mining town of Selebi Phikwe; in 2000 thl'C>e t!JJ·ee towns registered antenatal prevalences of 44, 36, and 50 per cent respectiveJyl' Yet this initial urban predominance was reversed as thc epidemic grew. By 1999 prevalence among pregnant wom~n was 22 per cent even in the Kgnlagadi dese~t area, while !he highesl reported prevalence among them at thiil t1me was ) l per cent in the northern district of Chobe. Overall, according to !he governmeHt. 'the 2002 survey reveals slightly higher rares in rural tl!an in urban areas'. The annual incidence of new infections for the whole country at !bat time was estimated lo bc; 6 per cent, roughly three-quarters of the level readwJ amoug young people at Rakai dming the J 980~." 1 ,\u early attempt to explain the speed and scale of Botswana's epidemic highlighted three lhctors: 'tbe position of women in society, """-"~~'1"''''1 their
40 The Conquest of ! he South lack of power in negotiating sexual relationships; cultural attitudes to l~rtility; and social migration pattcrns'n Gender inequality fostered the qlldenllc throughout Central Africa. Commercial sex, driven mainly by female poverty and lack of opportunity, has been little studied in Botswana, but elsewhere 1! was important especially in initial urban. epidemics, although p~obably Ic~s centrCJI. than in Nairobi or Kigali. Women held only 8 per cent of Znnbabwe.s and 15 per cent of Zambia's formal sector jobs in the early-rnid l99Us.- 2 'Divorce, rurul poverty und superior earnings were the principal . ''ns cited' by sex workers in Harare in 1989; 70 per cent of them. wen; divorced. probably with children to support, and nearly came from drought-stncken southern Matabelelaml. Six years later, 86 per of sex workers tested there had HTV, like 7U per cent of those working the main road between Zimbabwe and Zambia in 198 7, 56 per cent in Blantyre in 1986, and 69 per cent in Ndola in 1997-8. 13 Alihough willing to use condoms, only about half of those in Harare in 19 8 9 and one-quarter of those in Blantyre and Ndola in the mid 1990s could overcome their clients' opposition 24 Studies of young male factory workers in Harare during the 1990s showed both their fecklessness and their dilliculiy in avoiding ri:;k where HIV was so widespread. Their annual incidence of new infections was 2 per cent, meaning that hal! were likely to contract HIV during a normal working lifespan. Similar levels of infection existed among long-distance drivers.h A Malawian villager later recalled how passing tanker drivers infected local women: The wives were spreading the virus to their busbands. tlw unmarried women were infecting the young men, the young tnen tnaklng rnoney front srnuggling vvere going into Lilongwe and having sex there. People were behaving very freely and they haLl no idea that anything had could buppen to them .... By 1996. 12 oyears a!lcr the trucks first started arriving, the death rate in the village ptaked at lour a week .... Our neighbours from other villages would not come to help people who were sick or help at a funeral because of fear of contracting lhc disease .... \Vc
became cumpleteiy isolated. 26
More commonly, however. infection passed from promiscuous men to their wives. In one small enquiry in Lusaka, lasting a year, 26 per cent of HIVpositive husbands infected their wives, while only 8 per cent o!· Hl,V-positive wives infected their husbands. 'Men generally acqmre mfectwn lHst, a carelul studv in Manicaland reported, 'li·equently during spells of labour migration in tow~s or commerciai areas, and then pass on the infeclion to their regular female partners based in rural areas.' By 1998 twice as many women as men there were infected, including four tilnes as many amo;~g people uged 1 7-2-1. owin<> to the disparity of age between sexual partners.-' Ne~·crthcless, women too could be 'movious', as Central Africans described it Most were not: even the highest self-reported accounts of sexna! behaviour s~ggest that only about 2 5 per cent of women had non-marital sex. YeL of those attending antenatal clinics in two areas of Manica land ir~ 1993-4. 16 per ceni of married women, 43 per cenl of single women, ..and '>0 per cent ol formerly married women were infected 28 Among the many !actors encouragmg extra-n~arital sex. one of the most important was marriage, due chiclly
'The Conquest of the South 41
1u educalion, labour migrauon, and rhe dedine of ln Botswana in :!UO 1. i(Jr example, the median age al first lllilrriage or cohabitation was 28 f(,r men und 2 3 for women. in 199 5 over 60 per cent of never--married women aged 20-·24 there were mothers, while 41 per cent of boys and l 5 per cent of girls nged 1 5-16 had scxnal experience. In Loba1se illHl Francistown. with very high HIV prevalence, 47 per cent of men and 39 pee cent of women aged l 7-18 had a Cil>tta! par1ner over a twelve-month period; 21 per cent and 16 per c.:nt had at !east two. Of teenage girls who bore children .in the late 1980s, 40 per cent h"d t·hem with men six or more years older than themselves. Young Tswana had adopted an experimental attitude towards sexthemselves' as it was known - ·so lhat you L'
42 The ColliJUest of the So11th Botswana's was fuelled also by c!hnic and cultural homogeneity, facilitating social interaction, and by its new-found diamond wcahb, which gave it the world's highest economic growth rate during the last third of the twentieth cent urv, Yet, as its citizens said, Botswana was 'a rich country oi' poor people', ,J 7" per cent of them living below the poverty line in l 99 :l-4, Such polarisation fostered both risk taking in the rich and vulnerability in Lhe pooL 30 In Karonga those llrst infected had been the more prosperous and educated. but as the epidemic developed it focused increasingly on the poor. A. survey of mining and industrial workers in Zambia, Botswana, and South Africa in 2000-1 showed IIIV pre\'alence ranging from 4.5 per cent among managers to Hl. 5 per cent among skilled workers and 18.3 per cent among the nnskilled.' 6 ln addition to driving women into occup in the northern Ovamboland regiLm, many of them pnwionsly based outside the country. During the mid l9'10s Namibia suffered an explosive epidemic, antenatal prevalence rising li'om 4 per cent in 199 2 to 2 1 per cent in 20lll. The northern nuclei al Katima Mulilo and Oshokati {another transport focus) retained high levels, but so now did the cHpital at \'Vindhoek and the main port at Walvis Bay, By J 996 Aids wa,; Namibia',; largest single cause of death, A relatively wealthy ,\lhcan country with great mobility, extreme income ineqmtlity, little female opportunity, and high levels of sexuaily lransmitled
Tile Cunquest of the Soul I! 43 diseases, il !lad many of the same conditions for expansion as Botswanu.'u ·Mozambique, by contrast, followed more the patterns of poor conn!ries like Malawi and Tanzania, once its civil war ended in 1992, Many rl'lllfning rdi.Igecs were prubably infected and especially high pr'"'alence cKistcd on l he north-western border with ~,!alawi au,1 in the central region along the Zambezi valley, long garrisoned by hem'ily infected Zimbabwean and lVlozambkan troops, In ·Maputo, antenatal prevalence rose between J 9'J4 and 2002 1!-mn l to l 9 per centY Meanwhile South Africa experienced the world's largest epidemic. with pcdwps 5 3 million inlc:ded people in 20lH, 41 Nut rmly did the socio,econornic structures uf :\parlheid make the country an Hlmost perfect enviwnment for !IIV, bul lbc beginning of lhe epidemic coincided wiih the township rc1ml! of Ihe mid l 'JIWs und ils peak took place a decade later during the transition lo majority rule, which compelled ordinary people to concentrate on survival ancl distracted both the outgoing regime and ils nationalist successor from HIY their chief priority. Yet it would be na!ve to think that ~~ven the llluol vigorous, stable, and popular government could bave protected South Africa fi'mn a major epideruic. A contrast is ~mnetimes drawn with Thailand, where an epidemic also became established during the early 1990s but was C<mlaincd by l 999 at an adull prevalence of 2.2 per cent, whereas South ,\!rica's was 1 '1.9 pa cenL 4 ' Yet this is to ignore the totally different ways in which IHV slruck the two cmm!.ries. Thailand was the llrst seriously aJYec1ed rnuntry in South-East ;\sia, wllh no established epidemic on ir,; borders and a diocase that fln,t took mot among cnre groups of drug users, sex workers, and ih<~ir clicuts, who could be targeted wirh impressive energy."" South Africa, by contrasL bordered a massive continental epidemic <md, as will be seen, had lltl identifiable core group but a great diversity of cross-border contacts that can scarcely now be traced. Of course, better political leadership could have reduceu the impact of HlV, but trying to prevent the extensive infection of South A!l'ica would have been like sweeping back the ocean with a broom. Thanks to irs uniqnely long, asymptomatic incubation periud, HlV-l could probably never have been prevented from reaching epidemic proportions once established in u general heterosexual population. That happened not in South Alrica but ten years earlier and 2,500 kilometres away in Kinshasa, All thb; is clear li:mn lhe way the South African epidemic began. The tirsi diagnosed case, in 19ti2, was in a while, homosexnal air steward who had probably contracted the disease in New York and died ol the Pnwmocystis carinii pneumonia common among l\.maicau patients. 'Gay plugue hiLi South AJ\-ica', the johannesburg Slar trumpeted, 45 Blood specimens Ji-mn 200 homosexual men in Johannesburg in 198) later showed that 32 were already infected, 1\llhough homosexuality was technically illegal in Soutl1 Aldca and a taboo subject among respectabie Afrikaners, clinics were opened at major hospitals. injecting drug users were screened (and found negative), patients organised their own protection and care, and by 1990 the )J,lmoscx;wl epidemic was already levelling olf. Of 508 Aids cases reported in South Afrh:a by January 1990, 207 bad been in homosexuals, 195 of them white:" Their infection was not transferred to the general heterosexual population, ror the
44 Tire Comjucst of Uw Sollth strain of Hl\'-1 infecting American and Soulh African homosexuals, subtype; E, se<Jrccly appeured among heterosexuals until the mid l 990s and then remained rare. By the early 2000s adult among whiles was barely one-third of that among Africans," \Aihile the medical authorities concentrated on the epidemic among white homosexuals, more perceptive doctors realised that a more dangerous l!etemsexual eoidemic threatened. The first Athcan in Soulh Africa definitely known to huve 'sulTere,l from lHV was a man from the DR Congo who upparently sought treatment early in 1985. During thal year 522 blood specimens from Africcms in johannesburg were testtxl and all t()lmd ncgati\'e. 1' The first oerious alarm emerged in 1986, when te~;ls on mineworkers !(nmd only 0.02 per cent preva!t:nce among South Africans 76 per cent amon~ men from Malawi. 'ln the and at work we were taunted am1 heckled,' the Malawians complained, ' ... they called us dying people.' The government ordered compulsory screening of mlgnmt workers, but lradc unions. medical ofllcers, and the l\lalawian authorities all resisted untrl all recruiting there was abandoned. 19 Such Central African migrants certainly helped to introduce the disease. Two of the first black South Africans known to have contracted HIV were infected some time before 1986 by a i\lalawian mineworker. The only positive case among 240 African women tested in Johannesburg early in 198 7 was a Malawian migrant But none of the 94 'self-confessed promiscuous women' and !,06 S other women in mining areas tested in 1986 was inl'ccted and mineworkers did not become a core group spreading infection to the rest of lhe South African population, whose prevalence levels they generally shared."1 Nor were sex workers an early locus of disease on the scale of Kigali, Nairobi, and Addis Ababa. By the late ] 990s they wc;re often heaYily infected - flO per cent in the Hillbrow area ul' jllimnncsburg, 56 per cent at I ruck stops in the Natal Midlands- but this was not the case earlier in the decade am! professional sex workers were rare Ill Afrkan townships, where men seldom blamed infection on them." The lack of a ,:ore group is a striking feature of the initial infection of black South Africans. The infection was rapid: during 1987 blood screening suggE'sted that HfV prevalence was already cighr ti~llcs higher amo:lg blacks than whites and was doubling every six months.'" But It was m!ec!JOn by diffusion across a long, much-permeated northern frontier and through individual contacts in many sectors of a mobile, commercialised environment. One indication of this is that even by 1992 the strains uf subtype C virus ovcrwhelmiugly dominant in the African population were drawn ll"om all parts of Central Africa, with a large element from neighbouring Botswana, in contra:;!, for example, to rbe homogeneity of strains in Ethiopia. Among pregnant women who tested positive at Baragwanalh Hospital in Soweto in 1991, A strong link was made with African countries to the north of South Africa or partners who travelled.' . Another indication of the complexity of transmission was that the h1ghesl HIV prevalence at that time was not in the industrial heartland of lhe Witwatersrand but in KwaZulu··NataL" Among the likely reasons for tlns predominance, which continued throughout 1he l990s, were ~he region's
The Conquest of the South -15 dc.t'e rural population, the dose inkraclion bel\\'een the countryside and lhc major city of Durban. high rales of mubllity and migration, equally high levels of sexually transmitted diseases, and lhe fact that Zulu had abandoned drcumcision two centuries before. Even in i 990 some or the pnwince' s highest prevalence rates, over 3 per cent of a.!tdts, were in rural areas crossed by truck routes lo Swaziland and Mozambique, with cunrcu1rations among late teenage women and those who had recenl!y shifted i<'nce. A sl udy there a decade later found th<Jl with a migrant male were nearly twice as likely to huve one or more member infected with HIV than w<:rc couples without a migrant. but thai in 29 p~r cent of conples with only uue infected member, il;at member was i be wonw!L Antenatal <Jt that iime in the northern rural di8lrict was 41 per cent, against 32.5 per cent fur the province ami 22.4 per cenl for South 1-\.fricd. as a \,vhole. J! The cHrrent iucidence of ne\v infections Ennong women aged 15-49 at Hlabisa, the region's main hospital, was 17 per cenl a ye<Jr, as high a figure as was recorded anywhere in Africa during the epidernic. The disease was closely associated with tuberculosis, which had been suppressed during the !95Us by chemotherapy but now became the chief opportunistic infenion in IHV-posiiive patients. Tuberculosis cases at Hlabisa multiplied nearly six times between l9':JU and 20lJ I 'The country.' wrote the doclor in charge. 'is busy burying ils young.''' The peak expansion of South Africa's HTV epidemic h,slcd li'om ubuul l ':19) lo l9':l8, when the number of new cases began io decline. Apart !hm1 KwaZulll-Natal, the wurst-allectcd provinces were Gauteng, the Free Stale, and l\lpumalanga, but perhaps tlte most severe impact was in the independent slalc:s of Lesotho and Swaziland, both tied to South Africa by labour migration. The mines were not inilially maj(Jr centres of inleclion a.nd H!V only slowly pcuetra!ed Lesotho. its statistics ar.J particularly erratic, but prevalence appears to have been !ow un!il 199 3, when a drama ric increase took place, reaching 31 pt:r cent at urban antenatal sites ill 2002. The carriers were relctrning mineworkers 41-\ per cent were estimated to be infected in 2000 who tram;mitlcd the vims lo tile women who in 2002 vvere 55 per cent of th,Jse infected." Swaziland was less dependent on migration to South Africa, but there, too, rapid infection coincided with the acceleration of the South African epidemic around 1993. A year later, 16 per cent of antenatal clinic ai!cndcrs were HJV-posith'e and the proportion increased continuously thel'eatler lo nearly 39 per rent in 2003, a figure rivalled only in Botswana. Rural and urban prevaknees were almost the saEJe. This rapid, sustained, and widespread growth was probably driven chiefly by mobiiily within Swaziland and the particular subordination of young women.' 8 \Villhin South Africa, similarly, high levels of mobility t:nsured that infection was relatively evenly distributed between town and country. ln 2002 the first popu'!aiJ<~" ,.c~rvey found 12.-1 per cenl adu!i pn'lmlence in African rural areas, 11 ") per cent Oil commercial farms, and 15.1-\ pt'r cent in areas of furmal urban housing, but a markedly higher prevalence (21>.4 per cent) iu 'informal urban areas', the squatter settlements ringing every town.'" This wa~ rhe most striking evidence anywhere in Alrica thai the epidemic had come to
46 The Comjucst of the Souih concentrate among the poor. One connedion \vas the prevalence of sexually transmitted diseases which were three times as common in informal housing areas as elsewhere. An intensive study in the Carletouvillc mining area or Gautcng in 1999 found that llSV-.2, the main cause of genital ulcers, was 1he single best prcdiclur of H!V, infecting 91 per cent of HIV-posit.ive women and 65 per cent of HlV-pusilive men aged 14--24. i\mong men at an STD clinic in Durban, similarly. H!V prevalence increased between 199! and 1998 from 5 ro 64 per cent and BSV-2 prevalence rose from 10 to -± l per cent. 60 A second connection between H!V and puverty concerned gender relationships. While commercial sex was relatively unimportant in the townships, widespread partner exchange like that in Kinshasa and Bangui was warke,Jly more common among the young there than in other contexts." Among men it was in part inherited Ji.-om a polygynous tradiiion, but it due alsu to the collapse of rural restraints on premarital sex its restriction to non-penetrative intercourse!, to arlillcial contraception that reduced the risk of unwanted pregnancy, lo the disempowc:rment of poor young men who could not a!Iord to marry and establish households, and to a reactive machismo that was further stimulated by tbc \'iolence of the anti-Apartheid struggle. 02 Although observers ovenlramatiscd Lhe 'lost generation' of the eurly 1990s, many young townsmen of the time aspired to be an isoka, the handsome, popular, and irresponsible hero who displayed his masculinity, in one of the few \Nays available in a township, by having pcnelr<Jlive sex with girlidends whom he could no! all(mJ to marry. 'If I were io have many lovers,' one explained, 'people ... would think that l was a which is a very nice thing tu be.' 63 Sexual debut came iucreasingly c:arly, at a m12dian of perhaps sixteen yeurs. Condoms were despised as de,rroying both pleasure and trust.. Many young men had little sense of !heir own danger: as late as 2003, 62 per cent of HJV-positive people aged JS- 24 believed they were at little ur no risk of infection. Others accepted the risk a; one among m<my that lhey faced. 'We thought that wiib the new government we could relax. study, plan a future.' a man of twenty said in the mid 1 'J'JCls. 'Now AIDS is lll:re to give us no future, WelL we'll all just get it and that'> life. I·Ve're cursed: we really are lhe lost generation. For young township women, tbe danger could be moreo immediate. Of thooe aged 14-24 interviewed at Carleionville in 1999, 16 per cent had been forced to have sex against their wilL Perhaps 2 per cc:nt of women of childbearing age \Vere raped each year. These were only the most blatant forms of coercion. More look the kmn of pressure rather than violence. 1\lany men aud women believed tb<Jt a man who had given bridewealth ftJr a woman, spent money on her, or received encouragement from her had a right 1o sex regardless of her wishes: 'Once you have kissed each other thai means you are preparing !(Jr sex. If she refuses at that point you must just force her.'rn Nut all needed to be forced. For some poor young \Vomen, their scxu;,!, migLt be their only means of survival ur of acquiring coveted goods and otllL:r benelits. A study in Cape Town found that about 20 per cent of teenage women rt:ported sex for money or presents. 'ff he wants a woman like me, a man must
The
of llw South 47
pay.' one said. 'J:\H-get about marriage ... that was something !()!'our mothers and grannies, it's not for us.''' 6 Yet even yotmg women eager to be r~qte, steady girllheuds with hope of marriage, were equally at risk of infection,' t(Jr it commonly implied unprotected sex. ln the mid l990s one-third of South Africa's teenage wome11 bore a child, Ten per cent of these women had JHV. J3y tbe age uf 2 5, one-quarter would be iufected-" 7 In its silent origins, its rapid expansion, its assoriaticm with mobility, its exploitation ol gender inequality, and its growing concentration among the poor South Aii'ica's epidt:mic was an extreme version of a continental pattern, much as Apartheid had been an extreme version of a wider colonial order. The epidemic lhat had begun lwo decades earlier close to the equatorial forest had culminated at the SOHihern extremity of the continent. From that extremity the counter-attack would eventually begin.
The Penetration of the Wesl 4 9
6
The Penetration of the vVest
T
he penetration of Hl\1-l from the equatorial rtgion \V':t Ali'ica dHTered markedly from its expansion to the easl and south. bxcept m CClte d'lvoire. it. was more gradual and kss complete, reaching in the early 2000s prevalences only one-fifth or one-sixth of the highest elsewhere. The reasons for this are unclear but include obstacles to overl<;nd mobility from east to west, the wider economic opportunilies open to ~sl African women in towns, widespread male drcumc1swn, retallvdy low HSV-2 prevalences, and the barriers to inlCdlon presented by Islamic moral and marital patterns. Another difference. of less certain relevance, was that when the l-J:IV-1 virus entered West Africa, it !imnd HIV-2 already established. As a bumun disease, HIV -2 was older than HIV l. H was closely related to the simian immunodeficiency virus found in sooty mangabey monkeys (SIVsm) living only in the West Afi-ican forest regiol~ bc:ween th.e Casamance River in Senegal and i.he Sassandra River in Cote d lvmre, wlucll was also the endemic location of the human virus. HlV-2 :shared some 70 per cent of its genome with SlVsm but only about 42 per cent with HJV-1. Indeed, some of the eight groups of HJV-2 known in 2004 were more like SIVsm than they were like one another. This was because SJVsrr1 was very widespread and div~rse (although completely barmlcs~;) in sooty mangahey monkeys and because each HIV-2 group was probably the result uf a separai' : ·atsmission from a monkey.' Of the eight groups, six had failed to cstablislt lhcmsdv~s m lmman beings, having infected only seven known cases benveen them. 0! the two more successful. group A was the more common throughout the coaslal region west nf Cole d'Jvoirc, while group B was found chiclly in Ciile d'Ivcnre and Ghana, although scattered cases of both existed cht:where. 2 A study usmg molecular clock techniques estimated that rhe most recent comnhm ancestor of group A existed in l 'HO±J 6 and of group B in 19"15.±14._3 Yet. given the high prevalence of SIV among sooty maugabeys, iht'ir clOse m.teradwn WJtl, human beings, and the [requency of twentieth-century traHSiD!S:il
v:
48
vvas so fully adapted to monkey~. IUV-2 was about three times more di!Iicnlt than IIl\1 I to transmit through sexual intercourse and at least ten times more ditlic:ult to pass from mother to child+ Mortality li.·om HIV-2 may have been only abont one-third of that fhlln HIV-1, l(w viral loads wi_Te generally lower, those infected were often older, and progression to Aids might lake on average as much as 2 5 years, so that mauy of those infectetl never reachc;d that st~ge, although if they did the llnaJ illness was similar.' Given thr!l the opportunistic inlixtions fatal l.o Aids patients were of~en those common to the local disease em-ironment, it was understandable that HIV-.2 passed unnoticed until 1985, when researchers investigating the existence of Hl\1 -1 in Senegal discover,~d the other virus almost by chance. 6 This probclbly explains why HlV-1 and fHV-2 appear to have emerged virtually simultaneously: the appearance is an optical illusion. One diScovery was made, retrospective testing of the earliest stored bluud ll>r l!lV--2 antibodies rcveakd an intriguing pattern? Apart !\·om one obscure rekrcncc to an ulleged case in Mali in ] 9 57, the earliest may have been a Portuguese man who had lived in l;uinea-Bissau between 1':!56 and I'Jt.!J. Olhc;r infections there during the l 960s are also recorded. Five cases wt:~e found in Ci'lte d'Ivoire during the l ':!60s. Stored blood taken in 1967 also revealed two cases each in Nigeria and Gabon, both outside the range of sooly maugaheys and presumably infcded tlmmgb travel. They were followed in 1he transI 'F\ls by inf("clions ii'Oill 1\ilali, SenegaL and Angola, the last mitted through the movement of Portuguese troops from By the 1980s scattered cases were reported from many parts ol western Aihca, often from lhe countryside, sugges!i!lg a low-intensity disease much like Hl\1-J in its pre-epidernic days in western equatorial Africa. In Guinea-Bissau, hmvevec the liberation war of 1960-74, the presence of Portuguese lmops, the movunent of refugees, and perhaps especially the widespread use of inj,:dions by Portuguese military dodors appear to have bred localised and probably unique epidemic. Hospitals in Portugal later treated many cases cor!lraded in Guinea-Bissau al this time. A study in Bissau town in the late l 9 'Hls showed thai levels of infectiou peaked among men in their sixties and wumen io their fifties who would have been sexually most active during the I ')60s. Prevalence there among men who had served in the Portuguese army was 23 per cent; among the nineteen women who had had sex with white men it was 37 per cent. This wartime gavt: l;uinea-Bissau much the highest pre\·alence of HIV-2. ln the mid 1960s, 26 per cent of paid blood donors there tested positive, as did 8.6 per cent of Bissau's pregnant women and 36.7 per cent of ils sex workel's in 198'7 9 Ten years later IHV-2 infec1ed ll.S per ceut of people over 35 liFing on the outskirts of the town. High levels wm·e also reported i11 rural areas and spilled over (largely through migrant sex workers) to southern Senegal and The Gamhiaw Yet the epidemic never beyond this region, That would presumably have required a virus more inlccdious than HIV-2. Ill.V-1 was such a virus. c.rrivdl iu vVest A!Hca (ns dist.ind from weskrn ecjt!Ulorial Africa) is diHicult lo trace but possibly touk place in about 1960, slightly after its appearance in East and Centred Africa. A claim to have
50
Til~
Peneiral.io11 of ilw West
The T'enetrathm o( lhe West 51
L [ H
I. .(; E It I
_\
~2
The Pt:netmliu11 of tlie West
discovered one case in stored blood taken iu Bmhina in l9b3 can almost cc:rtainly be dismissed. i\ Mulian migrant who had never visHed equatorial Africa died in Paris in l 'J~ 3 with Aids-like symptoms, although this could as well have been HlV-2 a:; HlV-1. Ghanaian doctors came to believe that t!Jcy had sct?ll !\ids cases as as 1981, but no dcr.mls arc available and HIV- 2 would again have been possible. 1 1 Otherwise, the earliest evidence comes lhnn Cote ffivoire. Retrospective 1cc;ts on stored blood laken there bel ween 19 70 mhl 1983 all proved negative. Adult in declin;;d until] 985. the year when its Jirst Aids cases were diagnosed. and then began to increase rapidiy. ln 198 S. 38 of 79 sex workers were fmmd rn be infectul there, together vvilh 10 of 71 in the northern Ivolrian town of l\orhogo. /\ year l ., IHV-J prevalence was 3.0 per cent among pregnant women and -1.9 per cent among hospital staff in Abidjan. French researchers concluded thai tbc tlrsr HJV infections there probably Look place in about 1980. 12 Observers sngge-,ted ul the time that the city's sex workers 111.ight have been intl;cted by European tourists, but this is unlikely because the B Sllbtype ofHTV-1 prevalent in Europe did not become established in /\bidjan or elsewhere in \Vest Hathet. the dominant strain came to be CRFU2 1\G, the circulating form r;;re in the DR Congo but common in c;;-menmn and Gabon, implying a northward dilTnsion compariible lo the eastward dil!i1sion of subtypes A ancl D into East Africa -- a difiiJsion that in West Africa could have been carried in the !lrst instance along the coast by sex workers and their clients moving between LibreFille. Dona!<J, llnd Abidjan. became dominant among West Afl·ica's coastal sex workers. throughout Cote d'Ivoire (where in the late l9':!0s it was responsible lln- over 'JO per cent of !HV-1 infections). in southern Nigeria (causing 70 per cent of the entire country"s iufec!ions). and in most coastal areas a:, far wesi as SencgaJ. 1 l ln some inland sanmna regions. including northern Nigeria, another recombinant form. CRF06 cpx. was sometimes more common (cpx ~ignil}ring a complex of more than two snbtypcs).H There were several reasons why Abidjan and Cote d'huire shm.!d have become the focus of West All-ica's HIV-1 epidemic. Neglected until late in the colonial period but endowed with vast ar..;as of virgin tropical iiJrest, Cote d'lvoire experienced rapid development during the lirst two decades of independence, with a 6. 8 per cent annual growth rate of re::JI (;mss Domestic Prod1tct between 1965 and 198().1 5 Sparsely populated, il~ prosperity attracted immigrants both from economlcally faltering neighbours like Ghana and from the poorer savanna countries to the north. Hy the lule 1980s some two million migrants from Burkina, over one million lrmn Mali, and lnrge numbers from Niger were present in Ci\le d'Ivuire at any Lime. Alilwug!J many migrants worked in agriculture, over half lived in cities, especially in Abidjan, whose development as a major port increased its population between 19:55 and 1')84 fl·om ] 20.000 to nec;rly ! ,800,000. ln l 9 7 5 some 40 ver cent were non-lvoirian immigrants. ln older \Vest African cities the control of retail trade by vwmen fostered a rough equality of numbers between the sexes. but Abidjan, alone in \Vest t\Jrica, had lhe large male majority amoug adults that in East African ciries like Nairobi led lo highly commerciulised sex, although in Abidjan it led ulso to more sophisticated tim11S of t:m,rlesansbip, owing to
The I'crwtraU,m u( the West 53 the g1earcr ecnnomic independence of women in West Ali-ica and the regi,m's less CcJJIIstraincd sexualtradi!ions."' Like Nairobi, Abidjan was a primate city on which the whole of COte d'Ivoire's excellent Iransport system l(JCused. And as Vinh-Kim Nguyen has shown." two other features of Jl,bidjan helped to mitke it au epicentre of HlV infection. One was an aspiration to modernity that bred individualistic choice, extreme dillerences of wealth, sexual adventllrism the median age of sexual debut was fifteen"'- and compkx, disassor!ative networks through whid1 HIV could pass. In I 994, 51 per cent of i\bidjan's men aged 20-~4 saitl they h;;d casual sex and SG per ceut never used a condom."" The olbccr circmnslance an epidemic was the econ<Jmic crisis !hut struck Cote d"Ivoire during !he l ')80s as the world economy faltered and the easy gnm lh opportunities of the l97Us were exhausted. This bred unemployment, sexual commercialisation, weakened heailh services, and resort io Abidjan's 800 inf(,rmal dispensaries 'that sprout like mushrooms 11ftcr rain'2o When HlV I prevalence was first measured in Abidjan in 1985, the city was on the verge of an epidemic more explosive than those in Kinshasa or eveu New York. with un annual incidence of new infc;cliuns of over l per cent in l 'l8'J." 1 The core were the city's sex workers am! tbeir male clients. Bet11cen 1 ':!86 and l 99 J HIV prevalence among sex workers rose from 58 to 86 per ceul; <{! the latter date SO per cent had lllV-1, 2 per cenl HIV-2, and 3-± per cent both . Studies showed that contact with sex workers was the chief risk f~ctor for men, largely explaining why in l9SS men outnumbered women by nearly fhe to one among fUV-positi\·e patients admiHetl 10 city lwspilnls and 8 3 per cent uf the 24,735 people estimated to h
54 The Penetration of !.he West but by 1998 only 9 per cent were fwm Ghana, 29 per ceni from Cote d'Ivoire, and 56 per ccn t li:mn Nigeria. Recovery in ihe c;hanaian cc. my and recession in Cote d'lvoire and Nigeria probably shared the explanation wilh numerous Aids deaths among Ghanaian women and violence towards the Ghanaian community in Abidjan following a soccer match in l 99 3 25 Ghana was the first country to which Abidjan's epidemic spread. Testing facilities became available there late in 1985 and were immediately deployed on sex workers. Of those tested in Accra early in 1986, only 5 of 236 were found HIV-positive, but when attention switched to women returning from Abidjan. 74 of 151 were f(mnd infected and many already gravely ilL At the end of 1987 the doctor in charge reported that Ghana had 276 known HJV c<Jses, of whom 242 \Vere women, 199 were sex workers returned from Cote d'Ivoirc, and 145 came from Ghana's Eastern Region, where the patrilineal Krobo people allowed women no rights over land and young women had long been engaged in commercial sex. 'There is no work here,' a woman li:mn the area explained at that time. 'In Abidjan I can earn 10,000 CFAs a day .... f have about 12 men a day. Since I heard about AIDS I always make them usc condoms ... I don't know anyone who has iL' 26 Ahlw.ill(h Ghanaians babilually blamed HIV on these women, it was plainly an oversimplific<Jtion. lilr they had been singled out for testing and their predominance among those with HlV demonstrated that they had seldom transmitted the virus, which many were probably too sick lo do. Transmission vvas clearly more di!Iusc. Nevertheless, 20lll, as national adult hovered around .1 per cent. Eastern Region was still the most heavily infected area and commcrci<>l sex was still central to tbc epidemic> HIV prevalence in Accra al: that time was 5.9 per cent among men who bought sex and O.S per cent among those who did nuL Among men aged 15-19, 8 1! per cent of cases were aitributablc to commercial sex. 27 This combination of relatively low general prevalence and high inJ("ciion rates among mobile sex vvorkers Jml their clients was widespread within the region of liVest Africa focused around Abidjan. rn Benin, for example, HIV pr~valem:e among pregnant women in Cotonou rose slowly from 0.4 per cent in 1990 to 3.4 per cent in 1997-·8, while prevalence among the city's commercial sex workers rose from 3.3 per cent in 1986 to 58.0 per cent in 1997-8. It was calculated in the early 2000s that 76 per cent of male HIV infection in the city was contracted through commercial sex. Benin was unusual in that HlV prevalence in the general population was higher in some provinces than in the capital city, partly because commercial sex, a long .. established practice there, was also widely dispersed, with a close correlation between infection in sex workers and in the general public, 18 The remarkable point, us in Ghana, was Lhat high infection among commercial sex workers did. not precipitate the explosive epidemic seen in Kigali, Nairobi, and Abidjan. One reason was probably the equal gender balance in West African cities other than Abidjan. Another was that condoms had come to be quite widely used in cornmerciai sex: by 54 per cent of clients in Cotonou in 1997-8, so they claimed, and by 90 per cent in Accra in 20()1. In Cotonou the <Jge at first sex was relatively high and women in the general population reponed few sexual
The Penelmtimr of the West 55 parllwrs. Most important were !he two contrasts emphasised by a study in !997-8 that compared Cotonou and Yaounde in western Africa with Kisunm and Ndola in lhe east: the higb levels of male circumcision in West African cities (almost 100 per cent iu Cotonou) and the low levels of HSV-2 in rhe general population (12 per cent among men and 30 per cent among women in Cotonou). 2 '' A way from the coasl, in the savanua hinterland of Ctllc d'!voire. the network nf commercial sex remained an important means for the ditrusion of HIV bul il w
J(;
56 T/w Penctralion of tlze H'est 4-B months. lo The data suggest that iu this Islamic region non-marHal sex was to an unusual degree confined to commercial sex workers and young, unmarried, circumcised men, where it was least likely to spread infection to the general population. The same seems generally t,J have been true in North f\!l·ica, where, except in Sudan. ollicial prevalence figures al age 15~1 9 were generally 0.] per cent or less Hnd about l 00.000 people were thought to be infected in 2005. Although many of the earliest cases there were introduced from Europe by returning migrants, tourists, or injecting drug users, infection during the 1990s appears lo have !aken place mainly within indigenous but narrow sexual networks, both heterosexual and homosexual, with expansion into the general population confined by the Islamic marital ami social order, although it was under increasing strainY The spread of HIV in Nigeria needs to be seen in this context. H was often described as a delayed epidemic, 'with a for rapid increase', but in fact it fiUed logically into broader West Athcan patterns. Nigeria experienced two infections bv HIV-1, one in the south caused mainly by CRF02_AG and the other in th~ north caused by CRF06_cpx. !3oth revealed their first HlV cases in 1986, in sex workers, clmimg wbom and their partners much of the proliferation look " ln 199 3 the !lrst widespread survey showed prevalence of about 1.9 per cent among pregnant women. During the next six vears it rose gradually to SA per cent and the variation between different ~latcs widened, but those most a!Tected were scattered broHdly across the country. The prevalence (16.7 per cent in 1999) in Benne state, in central Nigeria, where Aids was known as 'dw Ahuja disease'. 'No one suffers from this sickness in our village here,' it was said, 'but these women who go to Abuja fk;r commercia! su!Ter Ji·mu ii. They come home almost dead.' Of 40 people with Aids studied in lhat village, only one did not have a history of 'life abroad'. The next highest prevalence was 12.5 per cent. in Akwa-Jbom state in the extreme south-east, where cross-border traffic coincided with great female independence and exceptionally high levels of commercial sex 39 Three reasons may help to explain why Nigeria did not suffer an explosive epidemic like that in Cote d'lvoire. One was that Nigeria was too big and diverse, with rnany local epidemics but no primate city to transmit disease throughout the country. Rural prevalence was higher than urban in some states in the early 2000s. The second reason was that sex workers were mostly Nigerians and only marginally involved in the wider \Nest African sex trade, at least until the later 1990s, so that even in 1994 only 13 per cent of sex workers in Lagos were infected. The third reason was the restraint imposed by the culture of the Muslim north, where women were cornmouiy secluded and average HIV prevalence was significantly lower than in the centre and south-cast 40 It is more diftkull lo explain why prevalence was even lower in the south-west. where extra·marital sex had long been common among the Yoruba and had become increasingly so among the young in the course of the twentieth century, unless perhaps the very diffuseness of partnerships rather 41 than their concentration around high-risk sex workers gave On the other hand, one factur encouraging the spread of disease was the
Tiw Pwetrmioll of !.he !Vest 57 mediucrit}: uf '-Jigeria's health system, rated by th,: World Health Organisation as nne of the wurst in the world. ln 19'JS the Federal Ministry of Health eslitnated thai 10 per cent of mv transmission was by blood 1ransfi1sion. a slill unresolved ten years later.'" . lll 1995, also, Nigeria's health aul.horities estimated that at least 24 p<:r ceut ul rile c'ountry's HfV infections were by fl!\'·2, although the country lav well oulsidco t!h: range: of the sooty mangabey 4 ' The virus bad probably c;Jlered Nigeria frmll t!1e west at much the same time as IllY· I was spreading from the e;;isf 'rind south. Further \Vest along the Guinea coast and .in Senegc-ullbia, L,,.,, HIV-l bad to penetrale a region where IIIV-2 was already endemic, if generally at low prevalence. The first search !lJr HJV-1 in Senegal in ] 9S S-6 c!Jidly revealed cases ol' HIV-2. both among sex workers in Dakar and especially in the southern Casamance region bordering the cpicentre of the disca:;e in Cuiuea-Bissau. Almost all were Senegalese who had never lefl. 1be COlllllry, whereas lhe first HlV-1 cases idenliiled were predomiuautly l(mcigners or Senegalese men who had travelled elsewhere in ·w~:;t or Equatorial Africa and uften had histories of bomosexualiry or drug usc. In 1990 Senegal's national of HIV-2 vws reckoned to be nine limes that of fliV-l, bu1 tile greater virulence of tbe latter enabled it to nvertake lHV-2 in 1996-7. By 20tH HliV-l in Senegal was sixteen times more prevalent tbun HfV-2, which was of equal importance in the Ziguinchor region on the Guinea-Bissau burde;-. '-' During the 1990s this reversal look place everywhere in the western coastal region except Guinea-Bissuu, where the diJierentia[ between the two iufcci.ions narrowed but did nol close. chiefly because of continuing (ali hough declining) higb levels of HJV-2 inkclion among ulder wornen. Senegal gained international renown by limiting its naLional HlV prevuience at age l 5 A9 to little more than l per cenL Much of its infection was cuHccnlraled among t.he Jola people clost~ to the southern border with Guinea-Bissau, where prevalence was two or three limes the na1ional a\'eragc. 4' Young, illfected ]ola migrants began to return fnm1 COte d'lvoirc ducing the late 1980s l.o die at home. Like the Yoruba and many other young people tbronghout lhe continent. they had during the twentieth century adopted risky pattems uf pre-·marital sex in response to the commercialisation of the e:~onomy, the need to migrate liH· urban employment, the declining status of women consequent on the spread of Islam, the increasing dillicully of lllillTiagc, the collapse of customary sexual restraints, the spread of sexual(y rnmsmitted diseHses, the marginalisa!ion of the region within independent Senegal. the destructive impact of structural adjustment policies. and their continuing anxiety to bear children at the pcoak of fertility." 6 Elsewhere in Seneg
Causation: ,1 SynLhesis 59
7 Causation:
A Synthesis
T
he I-HV--1
that Kapita Bila had first
iu Kinshasa in
the mid-1970s had taken almost exactly len years to and become visible among the African peoples al the three corners of the cc;ntinent, appearing in Ethiopia, Suuth i\Jrica, and simult<meously in the mid--l980s. Having traced that expansion, it is to return to President Mbcki's question: why has Africa bad the world's most terrible IHV /Aids epidemic? An answer must bring together the nature of the virus, the 'historical sequence of its global expansion, and 1he circumstances into which it spread, giving particular weigbt among those circumstances_ to gemler inequalities, sexual behaviour, and impoverislunenL Many ex1stmg answers perhaps concentrate too exclusively on the circunlstances, argumg for the primary importance of either sexual behaviour or poverty. 1 _ . ,_ , • The distinctive features of JHV as a virus were that it was re!aLJvely mlhcult to transmit, it killed almost all those it infected (unless kept alive by antiretroviral drugs), it killed them slowly after a long incubation period,_ it remained infectious thnmghout its course, it showed few syrnpwms until 1ts later stages, and when symptoms they were o!len those t:nmmon to the local disease environment. This unique combination of fcat~res gave a unique character to the epidemic, 'a catastrophe in slow motion 2 spreadmg silently for many years before anyone recognised i~s existence: One consequence was that whatever part of tbe world had the first such ep1dem1c would suJier especially severely, for the epidemic would have time to establish JtseH, unseen, not only in many over a large area but·c·m the general heterosexual population, where it would be vastly more dilncu!l to contam than in some limited high-risk group contracting the disease through the initial infection of individuals whose distinctive behaviour patterns had brmF>h! them. into contact with it. Tl~us the fundamenta.l reason \'\rhy Africa had tbe vvorst Aids epidetnic v\ras because it had the first i\lds epidemic. Understandably, many Afi.·icans were initially unwilling to accept this, rejecting the notion that HIV evolved _lrom S!V within i\i'rlca, despite the powerful evidence l<Jr il, because they Jdt that it was a racial slur- as indeed some commentators intended it to be. To deny 58
the orig.in c,f the disease, however, was to deny oneself an understanding of the particular tragedy that had struck the continent One way of grasping the uniqueness of HIV/Aids is to contrast il with earlier epidemics in African history. These were of three types.' The most comnwn were highly infectious diseases that swept briefly through large populallons, swiftly killing susceptible people bef(m_, burning out and becoming quiescent until the next epidemic. Smallpox, an ancient African disease, was of this type, as were cholera, an Asian disease that spread to Africa in several ninetet;nth-ccntury epidemics, and the great influenza pandemic of 191/:i 'three-day tlu', as it was known ln South Africa~· that killed between two and five per cent of the population in mosl parts of Athca. All these epidemics clearly differed from HIV /Aids in their greater iufectiousness, their short incnh;:Jinn period, the speed with which they killed, and tbeir brief but dr«;u;"JL: impact, which provoked equally dramatic human responses. Sonwwhat different were diseases with endemic reservoirs in African animals, 1\om which tbey were transmitted to human beings by insect vectors, sometimes in epidemic proportions. This was true of plagne, which especially infected North Al\-ica f:r:om the fourteenth-century Black Death to the nineteenth century; malaria and yellow fever, ho!h mosquito-borne diseases that became epidemic in specilic natural conditions; and sleeping sickness, an end
(,() Causation: /i 1990s it becam,~ dear i.hat the epidemics that had begnn in the United States and Europe during the late 1970s were unlikely to reach Africcm dimensions. Once impurted, bolb had taken root llrst among homosexuals and injecting drug users (fDLis), partly sell~segregated groups quickly targeted by health services and bearing a stigrna that hdped to sensitise the general population to the danger of contracting IHV. The Nortb American epidemic did spread among heterosexuals !1·om poor urban minority groups, but they too were signilkani.ly di!Tert'nl.iated from the bulk of the population. and in the meantime antirel.roviral drugs had become available.' Latin Amerkan epidemics generally fell into the sarne pattern.' Greater international concern centred on th~ possibility that inf~clions in Asia or Eastern Europe might expand into heterosexual epidemics of the Ati·ican lypc. Ail these. however, had begun among restricted groups of IDtJs. homosexuals, com1nercial sex workers, or their clients. In Thailand and Kampuchea, early areas of concern, it proved possible to contain t:pidelllics by targeting these groups, much as Soulh Afnca largely contained its initial epidemic among white homosexuals. 6 India, China, and Hussia wert: seen as the danger points i(Jr a 'second wave· of H!V/ but sceptics pointed out that fnv antcnatul clinics Africa (and Haiti) showed HIV prevalence of more than i. per cent anJ in Asia, at kast, casual and intergeneraLional sex concelltruterl almost entirely on institu-· 8 The important iionalised commercial sex workers who could be point. it vvas agreed, \Vas for go:;.renJnlents to intervene at the L~arlie~t stage of an epidemic. 9 This was the opportunity that i\fi·ica had noi enjoyed. Thus the origin and uature of the virus primarily dc!enuined the character of the African epidemic. But it was shaped also by the multitude of circumstances in which it took place, many of them wiih roots far back in the past. No one of these was decisive: all must be incorporated into an explanation. Tile most fundamental was the demographic context.w Bei(>re ihe twentieth centwy, Albea's hostile disease environment, harsh physical and climatic conditions, and history of exploitation had made it an underpopulated continent. During the twentieth century medical and other innovations had removed many of these constraints and population had grown at increasing pace, perhaps multiplying six or seven times in the course of the century. Growth peaked in the 1980s, when the population of sub-Saharan Africa grew at about 3 .l per cent per year, almost certainly the fastest natural increase over a long periotl for any large population in human history. Il cannot have been entirely coincidental that HIV became epidemic at exactly the moment 1vhen demogrupliic growth reached its peale One long-term connection was the pressure that lay behind the penetration of the forest, exposing human beings to animal diseases of which SIV was only one. More im!ncdiately, population growth drove Ali'ica's massive late-twentieth-century urbanisation - at about 5 per cent per year during the 1980sll - which created cities like Kinshasa and Abidjan, where networks of partner exchange were wide enough to raise IHV to epidemic levels. Later, in i he l LJ90s, emerging areas of rural overpopulation and poverty, such as Malawi, would provide 'conditions for especially devastating epidemic impact. ln both town and country, rapid demographic growth swelled in particular the numbers of young people who
Causatiun: il Synthesis 61
were especiaily vulneruble to HIV. [n the mid l990s, !(Jr one-third of ull Tanzania as were aged between l 0 awl 24Y One reason why HIV spread more widely in Afi'ica ttwn elsewhere was this preponderance of young peop!··
The: ~pidemic also came al a particular moment in Albea's medical The historian of HIV /Aids, Mirko Gnnek, suggested that the epidemic was, paradoxically, in part a consequence of medical advance: that until medicine had reduced lhe prevalence of other infectious diseases such as tuberculosis and smallpox, death rates were too high to allow H!V to establish itself in sufficient numbers of people to reach epidenlic proportionsu There is no obvious wuy ro lest this intriguing suggestion, which perhaps exaggerates the extent of medical advance in sub-Saharan Africa, where in the early 1990s communicable diseases still caused 71 per cent of morbidityH NeverthcJe:.:s, it is lJOth true and disturbing that the epidemic liJHowed immediately on the period of greatest medical impnwernent in the continent's Between 19bS and I '!88, life expectancy at birth in sub-Saharan Aldca rose ti·mn 15 to 5 I years. Over the same period the ratio of doctors to population increased by about 50 per cent and the ratio of nurses to population more than douhled. 15 In 19 7 4 the vVorld Health Organisaiion launched its Expanded Programme on Immunisation, in 1977 it completed tlw eradication of smallpox, und in l 978 it adopted a glubal strategy of primary health care. Some Lave suggested that smallpox vaccination or polio immunisation mav have spread IHV. Neither is likely, but it is possible that massive use !;f injections may have contributed to the HlV-2 epidemic in Guinea-Bissau and helped to adapt HIV-1 to human hosls, while blood lnmsli.1sion was a significant factor in tnmsmllting the virus early ln the epidemic. On the other band, medical advance -especially prior research into viral cancer - enabled scientists to identify BIV an,! its natural history with speed and precision once the epidemic attracted attention. Had it occurred twenty years earlier, the response, as one specialist put it, might bave been mere 'thrashing about'-' 6 ln Gnnck's analysis, the that idenlifled fUV was, ironically, part of the same technology thai enabled it to ltuurishP lle had in mind especially the advances in transport and human mobiliry that carried lliV to all parts of the Ali'ic2m continent and the world. As with int1uenza ilnd tuberculosis, mobik people S!JlTdld HIV along their networks of communication and gave the epidemic the shape of the commercial economy, whether they were migrants taking !he disease to rural Karonga, lhhennen spreading H around the shores 'c~ke Victoria, long-distance drivers infecting Beitbridge and Berberati, or sex workers and labomers carrying the virus from Abidjan to savanna towns and. villages. Everywhere infection concentrated along motor roads, which were especially central in Africa because il' transport system largely postdated the age of railway building. Some have argued that lllV/Aids could not have become an epidemic disease befixe the existence of widespread motor transport, but that seems doubthd, for many diseases wilh shorter incubariou periods spread their infection across continents in pre modern times. Yet the high infection levels in Coie d'lvoire and the association
62 Causation: il Synthesis between osciHating migwlion and rural prevalence in Central AJrica can leave no doubt of the importance of migrant labour and the regional inequalities underlying it in fuelling the epidemic. Gender inequalities and sexual behaviour are among ihe most important and controversial of the circumstances shaping the epidemic. Early observers often attributed the scale of infection in A!i·ica to high levels of sexual promiscuity. A survey in ] 989-90 in eight mainland African states and three Asian countries (including Sri Lanka and Thailand) questioned this and suggested a more complicated situation.'" l1 found that most Ali-ican men had had sex during the previous year unly wilh their regular partner and that only small percentages had had five or more casual partners. 'Non· marital sex.' the enquiry concluded, 'is a relatively rare event for a majority uf ruen and wornen: 1 9 The survey also showed thal !he difference in each country between rural and urban sexual behaviour was relatively small; a more important distinction may have been that urban sexual networks wer~ wider. On the other hand, when compared with Sri Lanka, a country ot severe restraint, African sexual behaviour was less inhibited; men and wofnen began sex earlier, married earlier, had wider age differentials between bil.sband and wife, and more often had pre-marital, casual, and commercial sex, a pattern that anthropologists attributed to !he absence in Africa of the land scarcity that kd Asian families tu guard their women jealously, to Africa's polygynous traditions that encouraged men to seek multiple partners without linking sexual partnership to age, 2" and to the twentieth··century social changes ·especially longer intervals between sexual debut and marriage ·- that encouraged pre·marital sex in areas as diverse as Kin,;hasa, Bangui, Kampala, Botswana, Soweto, Yorubaland. and southern Senegal. Vvhen the survey compared Afl·ican sexual behaviour with that in Thailand, however, a more complex picture emerged. Thailand shared Sri Lanka's restrictive sexual attitude towards most women but not towards men, so that Thai men were as sexually active as African men but concentrated their non-marital sex almost entirely on commercial sex workers. As has been seen, this was true in only a minority of African areas: in Rwanda, Burundi. urban Ethiopia and Senegal, and to some degree in cities with large male majoriUes like Nairobi. Moreover. Albea's entrepreneurial sex workers seldom worked m brothels, which made them more difficult lO target with preventive measures than their counterparts in Thailand and elsewhere in Asia. Four additional circumstances created opportunities for HIV infection in Africa. One was the widespread prevalence of sexually transmitted diseases, especially the global epidemic of HSV -2 that by the early 2000s doubled the risk of HIV infection fur 70 per cent or more of the population )n many regions. 21 Another ·-- still unproven but strongly suspected -- was the lack of male circumcision in large pads of eastern and southern Africa that helped to explain especially high HIV prevalence there. The third, with a similar regional impact. was the lack of economic opportunities for women. especially in eastern and southern cities. which we<Jkened their ability to protect themselves against infection. Added to that, a fourth circumstance was the lh:quent disparity of age between partners, resulting both from !emale poverty
Causation: i! Synthesis 63
and polygyucJus traditions, which was of central importance in lransmitling disease between age groupsn lronically, a major feature of precolonial Ali-lean socicUe;;, the rariiy of endogenous social strata. mude them especially vulnerable to HIV." Thus although African sexual behaviour was far from the generalised promiscuity of Western myth, it contributed in important ways to the scble of the epidemic. The best proof of this would be the role that behaviol.iral change would later play in reducing infection. Poverty was the other major circumstance shaping the epidemic, but again ils impact was far from simple. H!V/Aids wus not in any sense a 'quintessential dise;,sc of poverty' 20 Africa did not have a more terrible epidemic than !J](Ha because it was poorer but because it was inlccted flrsl. At the national level. IHV did not target the poorest countries, as high prevalence in Botswana and olber parts of southern A!i:ica demonstrated. i\t !he social level, tbe most striking point was lhe wide range of people inJected. 'fl!V alkcts ordinary people,' wrote Noerine Kaleeba, founder of The Aids Support Organisation in Uganda. 'It docs not only affect ·'the poor". H does not only allect ··lhe alflueut". It affects a cross-section of people.'"' One indication of this was that blame l~Jr the epidemic w<Js seldom allocated on grounds of ecmwmic class. The pal!c:rn seen in Karonga, where infection was associated with mobility, edncmion, and ofT-farm employment, was common early in the epidemic, bui not universal. AI Kabarole in western Uganda in !99] -3, for example, people aged 15 -2-1- wilh secondary schooling were more than I wice as likely to be infected than the uneducated, but the first attempt in Masaka to relate inJection to cakgories of wealth, measured by household property ownership, found !hal 'both male and female heads of the poorest households were most likely w be [l!V positive'Y A Huanced picture emerged from the most carelill study, in Kismnu in western Kenya in l99h, using a composite index of education, occupation, and hcmsehrc' , •<Jssessions to detlne socio-economic status. H l(mnd lhat among men uver 2 5 there was no association between this status and ll!V prevaleu,;e, among men aged l 5-24 and women over 2 5 h1gher socioeconomic stal.ns was associated wilh somewhat higher IHV prevalence, but among women aged l 5-24 prevalence was highest among those with low socio-ecunomic status. The poorer women had wider age differentials from their hnsbands. were less likely to use condoms, and had higher rales of HSV-2. Poverty. it appeared, did not give birth to HTV, but it was an c!lect.i\'C incubator. South Africa's population snrvcy of 2002 found a strong concentration uf th,, disease in informal urban locations but no statistically significant association between infection and household pon:rty. suggesling that social environment was more important thsn n1.ere incomc 29 One connection was probably lhe prevalence of oiher sexually transmitted diseases, as in Kisumu. A second was lhe greater poverty of women. Others may have been malnutri!ic,n and parasite infestation that increased susceptibility to disease aud the likelllwod of perinatal transmission, although research in this lield was still at an curly ~tage. j(J ~.:lore visible were the c!Jects of poverty in making progress !rom Aids to death so much faster in Africa than in cuuntncs.
64 Causation: A Synthesis owing to greater exposure to opportunistic infections and lcs-: access lo medical remedies especially, after 1996, to antiretroviral drugs 31 Most visible and distressing of all was that poverty accentuated the suffering of Aids patients bereft of the most elementary palliative care. This was the point where Africa's poverty added so greatly to the scale of the epidemic. After significant economic growth and medical advance in most regions for thirty years after the Second World War, the global depression of the late ] 970s that n~versed AJi-ica's fortunes coincided exactly with the transformation of HIV into an epidemic disease. The depression exposed African regimes thar were over-extended, over-staffed, and over-burrowed. Between 1965 am! 1980 sub-Saharan Africa's real Gross Domestic Product had grown al 4.2 per cent a year; between 1980 and I 990 i! grew at only 2.1 per cent a year, or only two-thirds of the rate of population growth. ' 2 During the 1980s per capita health spending more than halvcJ in the poorest countries. 33 Heavily indebted regirnes seeking international support had to accept structural adjustment programmes still further economy on services, including user fees at medical institutions I hal did Ieos to moncy than tu deter the poor from using them. In Zambia utilisatinn of heallh centres fell by 80 per cellt.'" Instead patients turned to indigenous henlers, 1.vhile biomedical doctors and their wealthier patients retreated to private prac:llce. This was the context within which Africans and their governments faced the first am! worst of IHV epidemics.
8
Responses frorn ilbove
.hough it is that the world's first HIV epidemic in a general bcterosexual population could have been prevented from causing terrible sullering, it is also true that the measures taken by national and international authorities during the 1980s and ] 990s were generally considered inadequate. Most Album governments were slow to grasp the scale of the crisis, many were weak regimes faced with more immediate problems, the <'nsis was itself so novel, and they perceived a thrcal to the national dignity that had so recenlly asserted. Consequently, the first epidemic did not produce the l1rsl response. When Alfican regimes did eventually react, they f(1uncl that the Western powers dominating interna!ional affairs had already deiineJ strategies designed to tac!Je their own less epidemics. These strategies, propagated by the World Health Organisation in one of the most striking modern examples of globalisation, proved less ellective in Africa. Whc!her any other strategy could have been more dl'ective, especially in the ea dier stages of the epidemic, remains uncertain. The \\'estern strategy was d.;signed to counter epidemics in sligrnaiiscd bui drticulaic minorities of homosexuals and injecting nsers. The crux was to avoid dernonising and isolating these minorities, win their voluntary cooperation, persuade them to abandon high-risk behaviour, coliabm ate with them in caring I(Jr the infected, and educate the wider public to avoid infection. HIV was not to be treated like the epidemic diseases of the past, whid1 Western societies had not experienced for sixty years, but like the dominaul degenecative diseases of the time, such as cancer. This strategy lilted smoothly ilnto the liberal, doctor-dominated health and sexual pollcies of Britain and France.~. H 1.vorked less smoothly in ihe United SLates, where dociors had less control over public policy, the ]{eagan administration did not conceal ils distaste for deviant minorities, and militant homosexual groups defended \heir interests in the name of human rights. 2 The e!Iect, however, was largely the same: by 1986-7 Western Aids policies vJere firmly voluntaristic and sensitive to the rights of the individnal patient, with a relative unconcern fur the protection of lhe tminfeeted because infection was concentrated among
j_
.
65
66 Responses from ilbow
minorities and eusy to avoid. ln A.frica a balance between individual freedom and the pnblic good had to be sought in quite di!Terent circumstances. One circumstance was that Africa in the l 980s still had both vivid memories of past epidemics and major current infections to control. Mass immunisation against measles, polio, and other infectious diseases was the chief medical preoccupHtion of the decade. The lust smallpox case haLl occurred in 1977. A new strain of cholera ·was spreading across the continent, causing over 5,000 deaths in Tanzania alone. 3 1\losl countries still had leprosy programmes and many had handicapped former patients begging in the streets; in 1972-3 the President of Mali had ordered the removal of this 'human garbage' from his capitaL" Four years later the first Ebola epidemics terrilleJ even experienced health workers. The likelihood that HlV would meet stigma and repression was thlOref(Jrc strong. Hospital staff ul'ten isolated and neglected tl1e first Aids patients as if their mere proximity was infectious. Staff at Baragwana!h Hospital in Soweto burned the first patients' clothes, a!tenderl. them in gowns, masks, and theatre boots, and relused to open body enable relali\•es lo identify corpses. '1 wouldn't touch him if ! were nmse at Mulago Hospital in Kampala warned. 'lie has AfDS. \!Ve him, we only show his mother what to do.'' Early in the epidemic there were many demands for the sterilisation of those infected." One HIV-positive woman addressing a meeting of chiefs in Botswana 'was asked why the government "hadn't respouded lo AfDS with the same cmmnilmcn! tlwt it had lo the foot and mouth epidemic?" That b by quickly slaughtering all ihe infected c<Jltle to prevent further infcctions.' 7 Nearly 80 per ce;Jt of surveyed women in Botswana and Zimbabwe in 1988 wanted people with HIV/Aids to be quarantined. A year later President Mni of Kenya is reported to have ordered this, but his instructions were 'quietly ignored'.s Although quarantine might be effective in an island like Cuba, it would have been utterly impracticable in Africa by ihe lime the disease was recognised. In practice, organised discrimination was rare, despite popular demands. 0;1e reason was the good sense of the senior doctors who controlled medical policy in most African stales. men such as Aaron Chiduo, Tanzania's Minister of Health. who insisted that 'Law can never succeed to control lhe Jisea:,e. \Ve must cuncem, on persuasion.' 9 Another reason was probably that goverrmwuts lacked the capacity to implement large-scale discrimination. Most African regimes sought rather to distance themselves and their countries from the epidemic. The suggestion !hut HJV had originated frum African monkeys wus regarded as a particularly lnsuliillg form of racism by nationalist politicians ant! many African physicians. Even Samuel Okwarc, Uganda's cool-minded epidemiologist. rejoiced when in 1 <J8 7 'We rwmagcd to out-argue the theories about the l'donkey origin' and oblige the WHO, for the sake of harmony, to describe Aids as 'caused by one or more naturally occurring retroviruses of undetermined origin' Y' For political leaders, moreover, HIV/Aids was a profoundly distasteful subject to mention in public. U questioned their compeknce because they had no remedy. it. threatened to raise demands for assistance that they could not afford to give, it distracted them from more pressing anxieties, it wao; potentially divic;ive, its victims ll<Jd
Hesponses jhm1 t1bove 6 7 a:; ye! no politic:al voice, and it might their couutry's image and tourist mdusrry, as il had already damaged !Iaiti'sn Public denial was thcrel{.re the norm. Ivlobuln silenced the Congolese p1·es~ for !(JUr years afler the first announcement of lhe epidemic's presence. Kapila Biia narrowly escaped imprisonmGnl after addressing an Aids conference without ollicial permission. 12 Zimbabwe's doctors were initially inslrucred not to mention Aids on death certific~l.es. Senior llgurcs like Houphou('t-Boigny in Ci\te d'Ivoire, Hastings Banda in Malawi. and Moi in Kenya ignored the suhject entirely ur denounced the Wes!crn press klr 'a new form of hate campaign'. Even Nelson Manrlela, alter a bold speech in 199] had angered a rural audience, retreated into silence d!iring his presidency, later explaining that in the J 99'1 election 'I wanted to win and J "dk al,out AJDS' and then ·had not time to concentrate on the issue' while PresJ(lenL 14 The most positive responses came from Musevcni in Uganda anJ /\.bdou DiouC in Sen,~gal, two young and highly inielligeul lemlers with the backing of skilled medical advisers. 'To not be ,1pen abo11t l\!DS is jnsl ignorant.' Mnsevcni told a jnurnalisL 'This is au epidemic, You can only stop il by lulkiug about i1- loudly. so that everybody is aware and scared, and !hey stop the type of behaviour thai encourages the spread uf the discase.' 15 fnilial pressure for action came chielly from senior doctors. !n january 1983 South Africa's Department of Health responded lo the first homosexual deaths by appointing working groups to trace contacts, conduct. tests, and survey llwsc at risk. adding a more fnrmnl Advisory Group on Aids early in 198 'i. DLuiHg 1984 Kinshasa's Ministry of Health collaborated in Projct Sid a, while Brdzzaville's doctors spent nearly lwo years pressing their governme11t to abandon its insistence on secrecy until iu December l98'i it iina!ly set up a nath))Jal cummillee charged to organise blood screening, duta collection, preve11liun, diagnosis, and care. ln Cameroun, similarly. doctors at the University llospilal I ook the lead in forming a national cmmnitl~e. witli slender resourcc:s. Zimbabwe was the first Third \V,1rld country to adopt a policy of screening all blood before transfusion. in july 1985. At the same moment the statl fit the !Jnil'ersiiy Teuching Hospital in Lusaka reponed gwwing numbers of /\.ids cases lo the chid' medical olfirer, who promptly ordered a press blackout, a national surveillance campaign, and acquisition of bluod·ksling equipment The lead in eastern Ali'ica fell to Rwanda, where the investig<:lion in 1983-4 stimulated an awareness campaign and bloodscreen ins in 1985. followed by a national committee and epidemiological survey in J ':l86. 17 Tanzania, Kenya, and Ethiopia all formed uational !\ids commill"es during I 98 5. Ethiopia even before an Aids case had been reported. In Uganda, where evidence of au epidemic had existed since 1982-1, civil war aud the chaotic state of the Ministry of Health pr~ventecl action until 1\lusevelli's Nalional Resistance Army tuok Kampala in January 1986, when olficials briefed !he new minister awl a committee headed by Okware began to organise pubilL~ educa!lon, condom supply, and blood screening. Museveni threw his weight behind the programme in September l<J86, apparently alarmed especially by tile prevalence of infection hr the army. Since his Health Ministry's budgel. in real terms, had fallen by <J) per cent since l 'J7lJ, Uganda aid from the VVorld Health OrganisationJ 8
Respo11ses{imll
A/Jove 69
The WHO had been siow to respond to the l-HV epidemic. Created at the end of tbe Second World War to coordinate international health mcawres and advise member governments, it had come to coneentrale ib limited resources on preventive medicine in Third World countries. HIV/Aids. by contrast, 'is being very well taken care of by some of the richest countries in the world ... where most of the patients are to be found,' as a \VHO memorandum srated in 1983. 19 !Is first meeting on the subject in November 1983, ulthough attended by Kapita Bila, listed the cbief priorities as safeguarding blood supplies and alerting homosexuals. WHO's priority Llr the Third iVodd at this lime was primary health care, launched in 1978 with the passionute commitment of the D<mish Director-General, Halfdan Mahler, who dismissed l':JSS as a dangerous diversion: HlV/Aids in
annual bw!gd from le;;s than one million to over one hundre,l million dollars. The prCigramme l:~ad f(mr initiul priorities, The most urgent was to screen blood snpplies in puor counlries so that medical systems no longer created new infections. Tlus was expensive ~ in the early 1 99(Js il absorbed about half the anti-Aicb budgets of several African countries and never fully effectit'e: in 2WH the WHO estimated that transfusions migbt still cause 5~ 10 per cent of worldwidtc transmissions. or 700-~ 1 ,.J.OO a day 25 The second priority was to train medical sla!T, !lrst in the clinical management of Aids and thea in llle connsclling of those tested for HIV, The third objective was public education, which. in the abscnc:e of a vaccinl: or cure. was the ouly means available to check tlw epidemic. Mann insisted on its eflicacy:
Dr HaHJan i\ifahler said in Lusuka yesterday lbar if i\frican couniries cunlinued to make AIDS a 'frunt-page' issue, the objectives of beallh for all programmes by ihe year 2000 would be lost.. .. 'i\IDS is not spreading like <1 bush !ire in 1\li'icu. fl is malariu and trdpical diseases tlld! are killing milliuns of cliildren every day,' he said .... However, Dr Mahler said he expected lhe WHll with the hdp of ulher governn1ents and non-govern1neatul agencies to 1nobilise resources and dravv up a strategy lo fig!Jl the syndrorne. 20
educates indivlduuts in a languuge ihat they understand and in a manner appropriate to their .needs, when sunitary and sochd services ~._;xbt, and when the sodd! dirnate is favourable and uot dlscrin1inatory, thcu inforrnaUon and eJucatiou Ci.ilJ. • !lvcly briug about a n1odi1iccuion of behaviour. 2 ('
This belief that HIV I Aids obscured Africa· s real health problems was to survive vigorously into the next century. Yo[ even before Mahler spoke, the tlrst Aids Conferences ir1 Atlanta and Brussels in 1985 hnd given global publicity to the heterosexual epidemic. hearing alarming (and sometimes unreliable! reporrs of prevalence in several parts of Africa. 21 ln January llJ86 WHO's Executive Board recognised HIV/l\ids as 'becoming a major public heahh concern' and urged the Director General to 'cooperate with i\1ember States in the development of national programmes'. Two months later a meeting uf the organisation's African members in Brazzaville recommended each state lo create a national /\ids committee, conduct an epidemiological assessment, establish a survdllance system, expund its laboratory facilities, and launch a public education programme. Jn May 1986 the annual World Health Assembly urged the creation of an organisation to coordiuate WHO assistance. As African countries like lJganda increasingly sought aid, !\fahler esiablished a Spcc1al (later, Global) Programme on Aids headed by lhe American director of Projel Sida, jonathan l\'lann 22 Mann was the most important figure in the history of the Aids epidemic. Aged 39 and trained in public health. he brought into the Global Programme the American Aids activists' haired of discrimination, driving administrative ability, impatience of WHO bureaucracy, experience of suffering in the warus at Mama Yemo, and an idealism that entranced intcrnatiottal auc!iences. 23 'The danger of AIDS brings with it an historic opporiunity,' he told a conference in 1988, ·,, ihrongh AlflS and our common fight we are led onwards, irresistibly. towards a new vision of the possible a new paradigm of heallh ~ expressing a universal message out of the special circumstances and insights of our time.'M ln four years he raised tile Global Programme's
\.Ne lH1ve h
To prevent discrimination was the fourth and, for 1\-!ann him~df. probably lhe most imporl<mt element in the Global Programme. Against the many who urged rho compulsory testing of job applicallls, hospital patients, and inrernational travellers, or the isolation of those found lHV -positive, !Je iusisied pasoiona!ely that this vvould not only breach their human rights bn!: would deter people from sn:king medical ,:are. endanger the healthy. and accelerate !he epidemic: The public l!caltb rutiundle fur preventing discrilniuation against HiV-infecled persons is cugent and practical. If !IlV iulection, or suspiciou uf HJV infecti<m, leads to sligmatisalion and discrimination - such as loss of employment or forced separation from family then those already HIV·infected and those who are cmlc,:rncd they might be infected will l<1ke steps to avoiJ Jeteclion and wiiJ avoid contact wilh health cmd soclc:! services. Those most needing infunna!ion, education, couuse!Hng or otber suppurt services would be driven away and this wonld seriously jeopardise e!Ions to pre\'ent HfV infections. Stigmatlsalion und discrinoinatioJJ ~ these are thn,uls to public health-"
This lugic convinced the WHO. In 199:2 its World Health Assembly resolved 'thai there is no public health rationale for any measures that limit the f'ights of the iildividual, notably measures establishing mandatory screening'. Mann saw this his greatest achievement. 'For the first time in history,' he wrote, 'preventing discrimination against infected people became an integral part of a strategy io control an epidemic of infectious disease.' 2 " Wlwther Mann was right is one of the most important questions about the Aii'ican Aids epidemic, For it c:m be argued against him that his str<Jtegy did not work; the epidemic spread despite; or even because of it: the principles were unreali;,lic; his human right:> were in reality the rights only of patients wilh no concern li>r the rights of others: the emphasis on individual rights pwpoumled by i\merica's homosexual minority was irrelevant a mass heterosexual epidemic; and uo Westem government faced with an epidemic
70 P.cspo11ses ji-om ,4bave
on the African scale would have dreamed of maintaining such a l\Iann's strategy, in fact, could be seen -- and bter in the epidemic sometimes was seen - as an example of intellectual imperialism, of globalisation at its most arroganl. 29 Yet that was later in the epidemic, when treatment was available to atlract the infected to see!, medical care and when familiarity wilh the disease had somevFhat reduced the stigma snn·ounding iL Mimn, earlier in the epidemic, pointed to opinion surveys showing wide support for discrimination and clearly feared its polent.ial His strat.ogy may have restricted that cruelty while the danger was greatest. Prom I 986 to 1990 Mann's Global Programme ruled. B<xausc the VVHO could intervene in a member country's medical allairs ,1nly at its request, states were encouraged to invite WHO assistance in dcdsing short -term plans to control J-HV/Aids while medium-term plans were prepared. By Jm1e 1988, 151 countries had sought vVHO assistance - usually in lhc form of two or three expatriate public heallh experts - and l 06 had fcJrmulatcd short-term plans. As Mann justillably declared, 'There is simply no precedent in the history of global health fiJr the speed, intensity, or scope of mobilisation against /llDS.' 11 The plans generally pruvidcd l(n· a ?,ids committee with a small executive sruff within lhe 1\Iinistry of !IcaltlL equipment to screen b!oGd before tnmsfusion and ie:,t patients. laboratory support, a programme of staff training and publi,: education. a preliminary assessment of lHV prevalence, measures to outlaw discrimination. a WHO grant to cover the six to eighteen monlbs of the plan, arrangements tu drall a medium-term programme covering three lo live years, and WHO support for a donon;' conference lo mobilise funds f(Jr that programme. All these activities were supposed to operate through the tielJ agents of the existing primary health care system, ratl!er \l,an creating a new vertical structure.'n The llrst medium-term plans, mostly covering the late 1980s and curly 1990s, provided f(Jr more representative national Aids councils, introduced sentinel surveillance of !llV prevalence to be medsurcd when laking blood specimens !!·om women at antenatal clinics. and targeted the high-risk groups who at this time were seen as lhe main drivers of the epidemic. For the las! of these strategies the model was lhe programme in Naimbi providing STD treatment and free condoms for commercial sex Wllrkers, which gained lheir warm support, reduced the annual incidence of new infections among them from 4 7 per cent in 1 9 8 6-7 to 7 per cent in 19 91-2, and was claimed to prevent between 6,000 and 10,000 H!V cases each year. 33 Similar campaigns followed in Kinsh<Jsa, Abidjan. Bulawayo, Coi.onou, and other cities, although this approach proved less e!Ieclive in Africa than in Asia because extra-marital sex in Africa was less concentrated on sex workers, who were tlwmscives individualistic and unorganised. There was kss attention al this stage to their male dients, although several programmes targeted mobile groups llke truck drivers. Mass distribution of condoms, often llnauced by USAlD and supplied through social marketing techniques, was another common feature of medium term plans. Betwet;n 1990 and 1998 the number supplied to sub-Saharan Affica by this meaus rose from HI million to 2 36 millhm. 31
Responses}iom Above 71
Medium -term pJ;ms paid Jeso; attention to STD lrcatmenl, although some obseJTers thought it the most etlective means of controlling HIV. The most wcccssful of these early ~"'ids programmes were in Senegal ami Uganda. Senegal was arguably the~ only country in sub-Saharan Afric
72 Responses from flbov,;
encoaraged to contribute, and young Ugandans in particular to their behaviour to avoid infection 3 s All African governments followed the Clohal Pru,;ramme's pmcedums, but few >vith the energy displayed in Senegal and llgandu. Some launched ihdr plans late: The Gambia in 1992, Chad in 199"1. Several programmes, as in Ethiopia and Nigeria, were interrupted by civil contlict or military itJlervenlion. Others suffered long intervals between one plan and lhe next - four ye;:rs (1993-7) between Botswana's first and second medium·term plans. for example, at lhe time when the epidemic was spreading most quickly. Several experienced the 'lack of a strong political will and commitment on ihe part or the Government' of which Tanzania's planners complained in l 99H. Whereas Senegal benefited from continuity of medical leadership, Cameroun's Aids Council had eighr dir.octors between 1985 and 1999.'" All programmes were severely short of funds after the donors' initial entb usiasm waned. ln Congo-Brazzaville, for example. 'the peripheral care structures no longer received any funds from the state' between 1992 and 19')7, all funds being retained in the capital or allocated directly to NGOs, so lhe Aids programme, like Camc;roun's, was said to resemble the earlier partition of lhe country between concessionary companies."'' Even in relatively weal1hy Cfll.e d'Ivoire, the extreme concentration of medical services in Abidjan hamstrung the initial programme. In poorer countries like Tanzania or Malawi the problem was rather a lack of remurces ami administr;,\ive capacity. At Kbesa in northern Tanzania in 1994 .. ij, 'The district budget l(Jr 1\lDS control activities was ... barely sniticlent to pay one Ministry of Health 'ta!T member with a motorbike lo supply condoms and provide AIDS educution at government heaHh facilities in a district of more lhan 300,000 people, including an estimated 10,000 infected adults,'1l The most disastrous failure of policy at this period, however, was in Nigeria. When Aids was tlrst reported there, the able Minister of H.calth, Dr Olikoye Rausomc-Kuti, developed an elaborate lt:deral programme. Bnt donors were unwilling to subsidise an oil-rich country with military rulers who look no interest in the subject. In 1996, when ihe programme's sixth director resigned, federal spending on Aids was about 5 per cent of Uganda's, which had only half as many people witb HIV. Three years earlier only one of the country's 589 local government areas had submitted the Aids report required from it. ln 199 7 the government published a policy statement first contemplated in 1 'J'Jl Y The power and limitations of international orthodoxy in Aid~ policy were best displayed in South Africa. Expelled from the WHO, its white regime did not participate in the planning fervour of the late 1980s, when its main concern was the small homosexual epidemic aml ils models were American and European. 'When Aids Training, Information and Counselling Centres (ATlCCs) were established in major cities from 1988, they were located in white areas and initially had a largely white clientele. Only in l '!89 did oifio.:ials begin to take seriously the danger of a large-scale heterosexual epidemic among the black populallon. Even then aclion was inhibited by a health system divided between l 7 autonomous regional bodies. the indiJTer· ence oi political leaders preoccupied wilh preserving white supremacy, and a
Respa11ses ji·mn .1/Jave conservative prudery that vetoed an Aids education programme in schools. Instead, and uniquely, South Africa's HlV / A1ds programme was formulated from below, and here the WHO orthodoxy proved powerfuL /\J'ricun National l~ongrcs,; (ANC) leaders in exile in tropical Africa became aware of the emerging epidemic during lhe !ale 1 Y80s. Once the party was legalised in February 1990, contacts were made with the Department of Health and a.:rivisls in South Afi·ica. leading to a conference in April at Mapulo where it was agreed to establish a task force to prepare an HIV /Aids prugranmw. 44 Amid recurrent pulitin•l con!lid, a National Aids Convention uf South Aidca (NACOSA) was created during 19<J2 embracing the ANC, government health bodies, and repcesentatives of lmde unions, business, chm·ches, and NCOs, charged witb developing a national strategy. lis drafting committee included lh;~ two 1\NC leaders mainly concerned with health, Drs Nko~azana Zuma and Manlo Tsbabalala-Msimang, and drew on the expertise of doctors, ATJCC sla[f. aud acth ists. The plan they presented to the new ANC government in July J 99± was drafted with WHO ao,sistance and embodied all the current intcrnutional priorities. A mul!isecloral Natiunal Aids Control Programme vvas w be established in the President's Of!lce and implement schemes covering education, prevention, couaselling, care of all kinds, welfare, research, human righ!s, and law rdorm, all integrated into the prim~ry health care programme and invoh'ing participalion by people living with HIT/Aids. The annual cos! was estimukd at 256 million rand, against a current public health expenditure on HlV/Aids of 31-36 million rand. Appended to !he 23 l·page duL·umenl vvas a 4-pagc 'Priority Programme of Action' !iJr the llrst. year, to be met from the Department of Hcallh budget, embradng only prevention ociil'ilies. strengthening the primary bcalth care system, and tackling discriminatory practices with respect to TIIV/Aids."' This was the real plan, trirnmed lo <Jccord with the ANC's larger health programme, which concent1 a ted on creating a single and equitable national health system 'based on the Primary Hea!tll Care approuch'. Like gm'ernmcnts in tropical Africa eight yc<,rs the Department of Health, to which Aids was in fact entrusted, then prepared a short· term plan for 199 5 6 'with a view f(;r expansion into a medium-lerm plan' -" 6 The lines were drawn for ten years of con!lict that would focus international atlenlion on Suuth Africa and obloquy on President Mheki. a conflict between, on thL: one side, people with Aids and their idealistic sympathisers, and, on the other, politicians determined lo rc:cUfy centuries of racial injustice. T!Je HIV/1\lds plans of the late l Y80s and J 'J90s were largely devised hy ductors Medical workers faced many di!Hcull issues posed by the epidemic. The mo,l imn1cdiate was their owu safety. Although careful studies found that HIV pn.Talencc amung medical c>talT was similar to that in the general cloc:lors and nurses often worked 1Nithout proledive equipment and felt themselves at great risk. The average health worker at hospitals in Mwanzu in nurthern Tanzania in l 'J'l) was priclu~d live times and splashed will1 body lluids nine times each year. Midwives fdl especiully vulnerable, as did surgeons, who, as elsewhere in the world, demanded w know the HIV slams uf patients be!i;re oper<~ling. One displayed a notice staling, 'No test, no
74 Respo!!ses from Aboh: operation'. IVIedical authorities denounced attempts to impose mandatory testing, but many hospitals in rrancophonc Africa tested all patients without their knowledge or conscnt. 48 Although discrimination lessened as the disease became more familiar, !JNAIDS stated in .2004 that in four Nigerian states, One in ten pnrvldcrs rcp~)rted refusing to cure for HIV-pusirlve patietltS, and l U per
cent reported refusing them admission lo a hospital. Furthermore. 6 S per cent reported seeing other health-care \vorkers refusing to care for an HlV or AIDS patient. Sonw 20 per cent Jell thai many peopk living \lith HTV had behaved immorally and
deserved to be inlected 49 Compulsory testing was anathema to the human rights priudplcs of the WHO, which supplied testing reagents 'under very clear agreement ol only 50 ln reality many using them for SLlrveiUance and blood transfusion companies and institutions tested applicants for jobs or mcludmg American embassies (during the 1 990s), over one-third major compames m Kenya, South African Airways and the Electridl:y Supply Compan?' (until South Africa outlawed this in 1999), several church bodies in Central Alnca, and Botswana's overseas scholarships board. Many insurance companies demanded HIV tests, especially for larger policies. Numerous churches and some Muslim leaders refused to conduct marriages without prior testing <~nd a number denied marriage to people with HIV. Senegal was one of the hrst countries to te~t military recmits. a procedure adopted widely as IHV prevaicnce among soldiers reached alarming proportions. Doctors who objected that compulsory testing breached a patient's right to contldentiali!y and him to discrimination also opposed notification of HIV cases to the medical authorities. This was required in Angola and Kenya and was several times contemplated in South Ali-ica but rejected because it woul1l serve little purpose and migh I deter patients !hJiu seeking medical advice.' 1 Perhaps the most difficult decision facing medical. stall' was whether to disclose the result of a positive HIV test. Both indigenous and coloma! practitioners had opposed giving a patient what was in effec! a death sen:?nce. 'How do you expect me to feel when you tel! me !hal I am gumg to d1e1 one woman conmlaincd to her doctor, ' ... I want you to tell me that I am gomg to live.' Mor~over. as Okware asked, 'What will we do with him?'' 2 Some, he feared, might suffer shock, commit suicide, or deliberately spread their infection, Others might be abandoned by their families. Ecn·ly m the ep!demJc, therefore, the most common practice was to withhold the result. Of 2.8 doctors questioned in the Cenlrctl African Republic during the early 1 990s .. six never told patients the rec,ult, eighteen did so perhaps once a quarter, and !om about once a week; the general practice was not to tcll asymptomatic or advanced cases, but only those suffering early symptoms, and then by using euphermsms to avoid 1he dreaded word Aids while hinting strongly enough to erE1hle the patient to decide whether or not to accept the truth. 51 Increasingly, iwcvever. doctors - especially young doctors ·· rebelled against the dishonesty thls implied and the danger it caused. Many insisted that patients must be informed so that they could avoid infecting others. By the late 1980s the
Responses }rom Above 7 5 medical authonties in Kenya, UgaBda, and Tanzania had all concluded that palienls should normally be told their condition. 51 Gradually ihis became more common, although far from universaL Other dilernmas were even more dlliiculL For those committed to the human rights perspective, a fundamental principle was that a patient's HIV status mns! not be revealed to anyone else wl!lwut his or her consent. 'Conftdcnticdl1.y must be respected at all times and is non·negotiable.' the NACOSA plan prodaimed-' 5 ln Kenya, llganda, and Botswana the medical regulations in force early in the epidemic all incorporated this dogma. vVithout it, many doctors insisted, patients would not tell rhem the trulh. Yet if a doct.or knew ilwt a patient's infection threatened the sexual partner, shott!d not the partner be warned? Ideally, the patit;nt should give the waming, bu! if the patient !eared or refused to do so, as was otl:en the case, was the doctor juslitbl in breaking confidence und perhaps exposing the infected partner to revenge? 'Would the law support !he doctor? Would it condemn him if he did not give warning? A WHO consultation observed unhelpfully that. lhe doctor 'will be required to make a decision consistent with medical ethics and rdevanl law'. The South African Mcdlcal Association, after much discussion, set out careful procedures, as did Tamauia.' 6 Asked in the mid 1990s whether they would inform a partner under these circumstances, six doctors in Cape Coasl:, Chana, said yes, five said no, <md two said no, but Zimbabwe and Botswana it·rnplaled legislation w compel infected people to inform a partner bdote bdving sex, but opponents that this would discourage people from being tested. Hit was proper to inform a partner, the next question was whether it was proper t.o tell rmyone else. Nurses were especially hostile to enforced confidentiality, not only because of the risk lo themselves but because it prevented them from giving appropriate care and threatened to spread the disease. 'It is Eurocentric - perhaps it is good li1r white people.' they complained. 'But we Africans are different .~ we care about others, we care about our neighbours .... This secrecy is killing us.''" ln practice they were oll:en told the situation or could guess it, bu! !he problem was greater for lay caregivers, who oli.en - in 90 per cent of cases in one Zambian study - did uot know whether their patients had an infectious and lethal discase. 5 " Observers complained that this not only endangered the carer and violated her human rights bul threatened the patient with unsuitable care or, more seriously, with neglect by thuse tearful of an unknown condition. During the l<1ie 1990s several regimes in southern Africa mel these dilemmas by adopting a notion of 'shared coulidentiality' first devised at the Salvation Army Hospital al Chikankata in Zambia. A,s formulated by tbe authorities in KwaZulu, South Africa, ·c:onl1den1iaJity in this context means confining the knowledge of a patient's HIV/AJDS status lo as small a number as possible of specilied people. The Aids Support Organisation in Uganda had pioneered a similar approach less I(Jrmally. H was said to accurd wi!h the widespread African custom of entrusting a patient's treatment to a family grouping. Doctors had to decide not only who should be informed but who should give lhe infonnuiion. Many were unwilling to do so themselves, not only from
Hesponses/h•,n ,1/wve 77
7 6 Responses fmm .·lbove
natural distusle for a painful !ask but because they simply had no time for whut was often a lengthy proces~; of explanation and reassurance, taking at least '15 minutes, according to ont; specialist As a young physician put it, 'We doctors should cuncern ourselves with the tough medical tasks which other people cannot do. Counselling is nol a technical job, anybody can do iL'n' Initially it was commonly delegutcd to nurses, often 1vilh litHe preparatwn, but soon it was realised tbat counselling was n skilled task needing training and unusual gifts. The Aids Support Organisation was a pioneer in this field and its methods b~came the model !(Jr many parts of the conrinenL l;ivcn in the wrong way. the Lest result could be devastating: 'One elderly doctor scolded her: ·'Now your baby might die." An orderly hbsed: ''Look at you. You've got AIDS.'""" Many nurses, often from stern Christian families and sterner training schools, had litHe sympathy for i\ids patients. ln one study of nurses und laboratory technicians in Lagos stale, Nigeria, in 19'JY, ·some (5 5<9 per cent) of the health workers felt that PL\.\'HAs are responsible illness, while 35.4 per cent fell that they deserve the punishment their sexual misbehaviours.'"3 Among frightened, unedllcated patients, nurses had 'a rcputa·< tion for rudcne;,s aud even cruelty'. '[ think lhey can't handle all the dylllg and ;naybe lhal is why th
hospital and the stalL Staff of the Complex are also falling illl\iih ,\iDS .. <. They are weal. have diminished ability tel concentrate. aad are anxious lhal they will lose their jobs .... Sta!I have mauy family burdens anJ worries. t'viany are trying to snpport increasing nurnbers of orphans. l\1any of then1 have sick and dying family n1en1rbers lt means that staff come on duty already heavily burdened an,l anxious."'
For hospital doctors, too, the tloodiug of the wards with ,'\ids patients devalued medicine. 'Death no longer becomes a very serious alTair.' one at the Kenyatta Naiional Hospital in Nairobi com<mented. Medicine lost Ill" '· t>f' its intellectual interest, liJr 'the diagnosis is obvious'. 66 Doctors who could no ]onoer cure lost their hitherto high prestige and self.conlid.,ncc. 'It pains me to ~are for an AIDS putienL It really pains me.' a physician in Kagera complained. 'Because wlwtever l give l know it is not helping the palienL .. I would like a disease which kills quicker. This one is too slow m klllmg. Often, moreover, there was nothing to give because reduced health budgets could not provide the drngs that doctors knew could at least palliate their patients' suiTerings: These paiienls arc desperate. They move !l
lHtS
visited Hv..:, six,
SC\'Cn
hospitals ....
Yuu Ired their upportunistlc infections. bul the first time they come in they arc 6tl kg, then the nc,xl lime they arc 50 !,g and then they are 40 kg. You see these paiicuts deteriorate over time and you run out of tilings to tell them. They go tu dill~reni hospitals and in the end they come back. They are really just looking fur scHndhing nobody can give lhernY'
!dewy doclllrb and nurses i(rund no answer lo rhcir situation but to abandon their l'rofessionul principles in the medical strikes recurrent throughout the coulim:nt t\ study of registrars - lhe resident ward doctors at Kenyaita Natio11al Uospilall in 1 997~<9 found thai 82 per cenl were suffc•ring some dcgrc'f uf ihe rnorul and emotional exhaustion known as bllnHJUt, 'as result of wod.iug in an environment characterised by poor communication among hospital staff as well as a lack of n'sources and high numbers of patients with l!fV/:\.!DS'. 'Regarding HlV/ATDS, one said, it is iu: 1 to gd borne aud forget abuui it. Eveu the silnpie.st opportunistk hll'cctions Vl.IC have no drugs for. Even if \-vc do rhcre is only enough for a shnrt cout"sc~ .... Jusl because of the nmnbers 1 mn afruid of goiug to see the {H1tienls. You (trc d.fraid uf the risk of infection, diarrhea, ur!ne, vmnit, blood .... Just 1,~valking in a mum you think you will get TB. H is frightening to think about returning-"''
AllliJst this widespread collapse ol' muralc, devoted physicians slrone ull the mow brigltlly. One, who must stand for them all, was Elly Katabira, who opened rhe first specialised Aids clinic at Mula go Hospital in Kampala in ! 91::7 and wurh:ed there for the next two decades. 'Ilealth workers knew there was nu cure for AIDS,' he recalled, 'so they assumed thai people with AlDS didn't warrant any medical care. We started the AIDS clinic to show what etll!ld be done. We had to demonstrate 10 patients and health workers alike that peuple with 1\l!DS who come in very sick can ieave the hospital walking.'"' Katabira insisted that 'all mentally competent people should be informed of their
resulb':
It is not ce1sy lo tdl any one that he or she has got "\H1S and !hal he is going lo die in the next few months. Yet some of the patients need lo know and some ask lo be mid. This is not the type of news you can pass on in a hmry. You need to be prcpatred to explain the gruvity of Ihe news and be able to offer comfort and support to lile patient. and be able to answer some of the qu,,stions which are likely to he
0110
who breaks the ice, ·who ls usually
He coped with the strain by blocking out everything except 'that p;,lien! sitting in tiel sick. And dealing vvith depend<-~nis. A parent 1viH never better if she's worried about her children. These things are considered secondrate. but l think they're ve!y imporlanL ..
g.?l
7 8 Respon:;es jiom libove
Many people think that because I'm in the field of i\JDS, I look at it as something special. No .... The problem is wider. I go to the pediatric ward, and kids are dying because there is no amoxicillin [a basic antibiotic]. I could have walked away in protest, but 1 must do each and every thing possible to get my patient through ll:e next day. Use what you have." Despite such dedication, it was increasingly clear in the early 1990s that the response coordinated by the W!JO was having little effect in che,:king the enidemic. Some thought, indeed, that the coordinaliou itself was partly to biame. that nutional Aids plans, 'hatched likc chickens by groups of international consultants', sought to impose identical structures - hierarchy, medicalisatiun, verticality, dependence - smothering the local initiatives emerging het(m,~ the \VHO intervened. This judgment was too sweeping. but il was true that aU but the most successful programmes escaped the ownership of the communities whose energy they needed for In Kcnva and Tanzania, for example, thc programmes were seen ·.'/llO even the small agencies to which national governments refused to smns they had promisedn By the mid J 990s governments in sub-Saharan Africa were providing about 9 per cent of public HIV/ Aids spending in their countries. In an extreme but not unique case, be! ween l 987 and 1995 nearly 9 8 per rem of Burkina's expenditure in this field came as foreign aid. The figures are misleading, !(Jr most of lhe epidemic's cost fell on private individua!s?·l They are misleading, too, because the total sums contributed in foreign assistance were relatively smalL In 1990 some 9 3 per cent ot global_ cxpendi1ure on I-!IV j Aids took place in developed countries. As the number ol infected Akicans grew, expenditure per infection peaked in l 'HIS bclore roughly halving during the 1990s. In l 'J9l international funding for the Global Prcwramme declined for the first time.7 5 By thent !'vlann had quit his post as the Programme's director, !l1Huwiug conllict with other WHO personnel and open disagreement with !he japanese Director-General, who, with the support of many African countries, wanted to decentralise the Programme and its 200 staff to regional oillces -which J\:lann had deliberately bypassed -· and reduce what he considered its tendency to overshadow primary health care. Mann was frustrated, too, by what he saw as 'growing complacency, persistent denial, and resurgent discrimination'. Like other activists, he felt thai the initial stress on public education and the targeting of high-risk groups like sex workers h<Jd failed, partly because the African epidemic had spread into the general population, partly because experience had shown that 'by itself information is insufticient to change behaviour'. Behavioural change and risk avoidance required a degree of personal autonomy that many people -~ women, the young, lhc poor -- often lacked. The problem was not risk but vulnerability, to which the only answer was empowerment, and that required change at the social and ultimatdy the global leve!P This thinking was beginning to enter WHO strategy. In 1989 the 1-Vorld Health Assembly urged member states to expand the role of NGOs and of people living with JHV//\ids, whose previous lack of activism -- in contrast to their agitation in the United Slates or Brazil -- illustnned i\[rica's
Above 79 depolilkisation since independence. A year later rhe Assembly urgell states 'to strengthen lhe involvement of women by including in national i\.lDS committees a representative of women's organisations'. !Jnder pressure from feminist organisations, the \NoriJ Aids Conference of 199.2 l()r the first time gave the position of women a central place in Aids strategy. 7' The: whole structure of the Global Programme was also under aliack. Many national programmes had losl direction. One survey found that Aids commlttees had no! met during 1991 in 14 of 27 Afi'ican countries. Donors grew increa:;ingly impatient In 1 ~195 liSAID channelled il 7 per cent of its aid for K,enya's HPJ programme to NGOs and the private sector, avoiding the corrnption and incompetence of the government. By lhcn impatience had extemkd beyond the IVHO's clients ro the organisation itself. !u the early .l '!90s several international agencies- World Bank, UNICEF, UNDP, European Union, and others - established their own "\ids policies and programmes, bypassing what ihcy saw as the WHO's ineffectiveness. ln I 991 an external review of the l;lobal Programme suggested thai responsibliity should he shifted away from the WHO and the narrowly medical perspedives through which it Hrorlced. 79 T!J,~ tirst half of the l99Us was the time of deepest disillusionment in the Afi·ican Aids epidemic. The vims was still expanding at accelerating pace, especially in snurhecn Afdca, with no indicaUon as yet of reaching a plateau, much less declining. Early hopes of a vaccilw 01 cure had come to nothing. Annuul inl;.;nJ<Jtional conferences were occasions for collective gloom, unrelieved by new ideas or new remedies. National programmes were enmeshed in bureaucracy and inelTectiveness. The WHO was losing its leadership role. Beneath this surface, it is true, some of the linces lhal would evemually l'eactivute re;:;istance to the epidemic were appearing in the nmv emphasis 011 NGOs, women, people with lllV /Aids, and the vulnerable generally the impetus from below that the initial Global Programme had lacked. But these were unly thc first signs of change. Forth<~ present, as of 1995, the ordinary people of i'd'rica, infected or allectcd, had to oppose lheir own resources against the epidemic.
9
Vie\vs frotn Belotv
T
be chief reasons for the faihm~ of international policies in Africa during the late twentieth century were that they carne too late !o check an expanding epidemic and had no elfccllve medical rcmc:dy wnh which !o do so, but <mother reason was that the medical thinking underlying intcrnathlllal policies often conllic!cd wilh the ways in wbiL:h most .Aldcans pecccived the crisis. Their responses were diverse, as is commonly true in epidemics, but this was particular!)• so with HIV because its long incubarion period and lark of distinctive symptoms bred confusion ami eucouragcd dcmal. At an individual level, as a Ugandan woman said, 'Everybody suffers from silimu diiJcren!ly.'' At the collective level, understandings were set within the context of a long dialogue between indigenous notions of causation, which were chiefly moralistic, and the medical explanations propagated by governments and Western-trained doctors. Similar debates surrounding cholera epidemics in nincteemh-century Etlrope and America had resulted in victory for medical explanations because they worked, btl! in late twentieth-century Af::ka !he doctors had no effective remedy and moralism remained powerful. Yet this moralism was not merely traditionalist, f(lr it had blended with the imported moralism of world religions. The resull was a hybrid, a popular. resuonse to the epidemic that was at once stigmatising. caring, and capable ot mo.tivating behavioural change. The initial response tD H!V /Aids was commonly to blame Others. Indignant al suggestions thm. the virus had originated in Africa, intellectuals insisted that it was rather 'the white man's burden', a disease of American and Enropean homoseXLrals, imported, it was said in Kinshasa, in canned ti,Gd threatening borh health and authenticity. Villagers in Burkina held that HIV originated when a while man paid a woman to have sex with a chimlJanzee. 2 The ANC's periodical suspected 'the laboratories of many imperialist countries'. Other black South All-icans saw it as an Apartheid de\'ke, spread perhaps by teargas, designed to decimate the black population- an outcome; clescribeJ by one wllrte extremis! ss 'like Father Christmas' 3 Immigrants and refngees !l·om uther African countries were widely bdd responsible. Villagers blamed townsmen. Elders blamed the young. Men and women blamed one another. Everyone
80
\ 'icws Jl·u!ll 13rlow 8 l blame,! sex tvurkccrs, 'the main route of AIDS', as Afuscveni described lhem in 1990. 1 Seldom. lwwever, did rich and poor hold one another responsible. Iuili;d government warnings instille,J leur and prejudice, Of the three emphasised in ZimLahwe, 'Al!JS kill$' was undcrslood to mean imminelll death, ·AlDS camw! be cured' encouraged and 'illDS is spread in prombcuous sex' :>ignified thilt all HIV-positivc people were promiscuous. 5 The inilta.l lear was commonly fear of lhe unknown, fur people wi1h visible Aids were rare and many complaints were construed as possible symptoms. Perhaps because infection spreud slowly and 'ilently, there was little pauic aithmtgh the first case i.n <~ppear iu Kumasi caused a irafiic jam" but much rumonr. one of many 1·Vays in which the epidemic was shciped by Ihe largely oral character
One uld
~c:\ c1. ::-H.lVes among the Hliltoke fbmJaBi'lj trees: 'evcrytbing bin lhe hanJs of Cod.'
the old man said. Jluidther graw.ifJther rcstiiied that in l!w Ja1:-t nvo Jrear;.; H\le uf his eight d!ildrcu had died of 'dianhuea and coughing': ·cod must have his rcasnns,' be said quietly. 9
Others rook rdilge in lhe denial thai oral cultures facilitared. H WdS the preclominant response in Kinshasa in 198 7. 'f jnsl dun'! want to think about AJOS.' a Cabinet minister explained, while younger men dispamged SlDA (the French acronym) as Imaginary Syndrome to Discourage Lovers (S!Jndrome lnwyinaire pour Decowayer Ies !\moureux), IHvemc;d Syndrome to Hide Abuses (Syndrome Invente pour Dissillluler l;;s _4/ms), or lmullicient Salaries for Years (Salnircs Insulfisunts Dcpuis des llnwies)Y1 Denial was lo snrvive fur into the epidelllic. In 2002 an lcJUnd it dominant in South African village llnt haJ niue funerals in a single weekend. It was a coping device by ,,,-hicl' lo preserve dignity in unspeakable circumstances. 11 Among th.c best-known denialisls was the Nigeriau musician. Fda Anikulapo-Kuli, who denied the existence of III\', slept with hundreds of women, awl died of Aids in 1997.'2 Oth.crs, by contrast, used nmsic and song - as (h·curs 1.1 iddy in postc:olonial Africa -· to highlight issues closed to ordinary discussion. Luambo Makiudi 'Franco', hlntself HlV-posi!ive, alerted Kinslwsd youtl" in I 987: clividtOd the nations, Aids Lids destroyed rny rnarriage,
1\ids lH"
8 2 Views fi·om Below Aids has divided my family.
They a!G and drank with me, And now they are fleeing me. ll is said that because l bave /\.ids All my li·iends have deserted mc. 13
ln Kagcra, songs of the J 980s blamed lllV on witchcrafL dishonest young traders, or sex workers, lmt with time the mood shifted lo emphasise the 'flooding river', the scale of the catastrophe, and then to expressions of either exhaustion or resilience.'" fn Dr Banda's repressive Malawi, similarly, early songs warned that 'Aids has come', often blaming the (usually. female) sufferer, while 'The lribe is finished' of 198 8 captured tbe mood oi dejeclwn, but 'We are ail ut war with Aids' expressed a new determination associated with Banda's fall in l'i94.ts Most poignant was 'Alone', by the dying Ugandan musician, Philiy Lutaaya: Ou l there somewhere
Alone and !i-ightcned Of lhe darkness The days arc long Life of hiding No 1nore n1aking new contact No nwre loving arn1s Thnn,vn around n1y neckY'
By the early J 990s knowledge of the epidemic and its fatal consequences was widespread, although with much surviving confusion, In a poor country llhe Tanzania, fur a snrvey in 1991-2 found that 98 per cent of men and 93 per cent of women knew of HIV /Aids, whereas in 199 3 only I 7 per cent of India's women had thai knowledge and even as late as 2001 only 82 per cent of Indian men and 70 per cent of women had heard of the disease, 17 ln Kagera, one of the tlrst areas alkcwu, awareness arose firs! in 1982 -3 among men aged less than 3 5 and spread in turn to older men, younger women, and older women, becoming universal by 1989. That was probably a common pattern, but with marked differences. In Nigeria in 1999, awareness among women ranged from 88 per cent in towns to 69 per cent in the countryside, and from 91 per cent in the south-east to 50 per cent in the north-east and 47 per cent in the north-west, both strongly Islamic regions where women were often secluded. 18 The main source of information there was the radio, as was lme throughout the contineut. The chid exceotions were Ethiopia, where relatively few households had radios and the mair; channels of communication were meetings of peasant associations and urban wards, and Uganda, where more people (70 per cent of men and 82 per cent of women in 199 5) listed friends and relatives among their chief sources of information. 19 Alongside knowledge, however, there was much confusion, In Tanzania, as late as 1999, 46 per cent of women believed that HfV could be transrnitted by insect bites, a widespread misconception presumably inherited from colonial propaganda against malaria, while 42 per
Viewsfi·um Beluw 83
cenl tlwught that lHV could be contracted by sharing food, probably a memory of precautions against leprosy or tuberculosis. This confusion of HlV with other diseases added immensely to fear and stigma, as did a general overcstimatiun of the transmissibility of the virus, sometimes thought to be an ineviiable consequence of intercourse wiih an infected person. At the same time, however, conli11Sion with other medical messages led Kinshasa factory workers tu believe that HIV could be transmitted only to someone of the same blood group and fostered notions that inJection could he prevented by insect repe!lant or by raking antibiotics or birth control pills bel(Jrc sex. 10 · i\ warcncss that Aids existed and was fatal did not necessarily breed a sense of persunal risk. 'If people do not know of anyone who bas the disease,' it was reponed !rom Lesotho, 'then lhey do not feel at risk even though they may know ill a! their behaviour places them at risk.' During the J 990s thai personal contact with infected increased, but most unevenly. in Etbir bathing and for washing c!CJtbing. I dm1'l have trousers, The trousers which! had. I sold them, !lack clol1Ji11g. Anolhcc complaiul is the wound which is nul healing. l have a lnt of pain. U only l lwd medicine for pain reliefs, Because of ali these problems I will die soon. 12
The most frequent sywptoms reported by patic;n!s in Uganda were 'fever (60 per cent), iclllowed by cough (45.5 per cent), continuous diarrhoea (32 per cenl), sores on the inside of the mouth ( 18 per cent), weight loss (lc1 per cent), swellings 011 the side of the month (10 per cent), and herpes zoster (6 per cent)'. In addition, many patients - 58 of 100 in one study a! Bloemfunldn Hospital - snfrercd psychiatric morbidity. The combination of diarrboeil, wasting, and infections of the mouth made feeding of patients especially difficull for the poor. 'Sometimes when my son tells me "I wan1 such and such a thing" l cry after I l~1il !u think how l can find the things thut he wEmts.' a caregiver explained. 23 Many opportunistic conditions could be relieved by an inexpensive drug, cotrimoxazole, which was widely used in Europe fur twenty years before it was recommended for use in Africa in 2000. 2 " in the final stages of disease, the policy of leaving sufferers to die at horne commonly prevenied elfeclive pallialion of the terminal pain that was perhaps I he most terrible aspect of the epidemic:
84 Fieivs .fn.Jn1 Belo\v
Views from Ilcluw 8 5
I GJ.n't even LegiH io describe the kiwJ ur pain ln: \\'3S ilL He had this terrible headache, which lasted for five days. He never lust consciousness, l hild known oil along that C!Jris was going to die, but ! \I.'
alint>;-,l daily. Every srnall ikh, sl..in irritatiou or aLnonnal congh nwkes nw \·Vonder
wht:Llh~f the hour of ll1J:' death is nbout LJ arri\'c. l3t!l, su far I bdve recovered my heailh each iirnc. I can reassure rnyself thm l mn going to Hve a Hale lnnge1 and in u po:~itive way. q
died. Such uuJignified pain and suffering."
:\s people became more famili<Jr with the dit;,,ase, they becumc if anything bss willing to be tested for HlV infeciion-"' Knowledge or their tHV status might help them lo protect others but was little advantage to themselves when no remedy existed. 'I'll do the HIV lcsl when there is a cure hn~ AIDS,' one said. ·r don't wailt to make myself miserable. As lalt: as 2000, only an estimated 5 per cent of infected people in the d,~veloping world were aware of their condition."' Those who did :,eek testing during the l 9'JOs were k:ss otkn those most al risk lhan those worried by poor health or planning marriage or conception. 29 Reactions to a positive test result varie:Ll. 'Some people display rw emotions,' a counsellor in N~tal explained, 'others become viulent and abusive. Some patients rake a lung time to absorb the shock aud reach acceplance while others are pragmatic and feel that they will die day anyway so what di!Ierencc docs having A.lDS make.' Shod followed by verbal and physical distress were naturally the most commnn initial reactions. 'Hearing this news shattered me to pieces,' one remembered, 'it W<Js llke reaJing out my death sentence.'"' Some assumed that I hey haJ only days to live. ln ~ it!J H!V were 35-·-l:O times more likely to atkmpt sukick than lhosc without it A few killed their dependants as well as themselves. 11 l\lore lapsed into despair:
An J UV diagnosis is life cbaugiug,' another n::cullc:d, 'it. brings about suc!J l(~dings of fe<Jr, shame and isolation. il makes people feel dirty, abnormal, frightened. The first challenge is to regain a seuse uf self worlh, sdf confidence and Many c!aimecl that rhuse who responded most positively also snrvived longest. As Ndonji's testimony suggests, positive HIV tests were ur!eu interpreted <JS I, in (enns or the family as of the individuaL Ifeterosexnal Aids in Afrka, unlike homosexual Aids in the Wcsl, was above ali a disease. 'When l inform a person tested !hat she is carrying HlV,' a doctor wrote, 'she cries inmJe
or
l fdt thul I am a rersun that is dying any minute. f'm ju~l dying. l will soon leave this world. I had a few important things thur I reaily liked. l decided, well, I'm dying, so I sold thclll all and the others l decided just to give out to my rdatives, ns I wanted ro remain jw;t
iiS
myself. 12
13y contrast, some of those tested positive retained equanimity by Hally denying the diagnosis. i\ counsellor in Ethiopia found that uneducated people had dHlkulty in understanding the test and seldom appeared disturbed by the result while educated people initially reacted negatively, often appearing shocked, bursting into tears, or expressing denial, before asking practical questions abont how to betwve in order lo live longer. 33 lt W<Js the counsellor's task to bring the applicant lo this stale of acceptance. 'T be,:ame very emotional and found myself at a complete loss as to what to du about my situation,' Azariah Ndonji recalled. 'I wanted lo !-.ill myself. HLtt [ had a wife aud two small daughters.' His cuunsellor talked him out of suicide: Since then I have never thought about anything oiher than iiving positively. It has no! always been easy. My 2 5-year-old wife has bc·en confirmed HlV positive and both she and one of 1ny daughters have been ilL I Jo vvish n1y vvife had not fullen iut" this situation. If God could have prevented her being l(m:ed lo face lhb death Loo. i \vould have been so rdicveJ. But it wa:-, not- tu be ,, 1 have accepted my fate for what it is. it makes me bitter
that l have to spend
so much lime worrying about my health. l find mysdf wakhing uver my bealth
'I '
I
1 an1 otlcn struc:L ... to observe lhat young lH1ll1fllTicd :::,erupusitives art: 1nore aifecteJ ulundly by lht: impossiLility of creating a hunily or being a support to their purcnts lhun by the facl of knowing their expectation uf iile to be limited. For Hwse who alreddy bave a p<mct
children is dwir principal concern. 37
This care conic! slimuiatc pusilivc responses. TASO in Uganda found that some penple. on testing positive, abandoned plans and focu:;cd all their remuining energy on providing !(;r their children. Bul concern l(>r the could ulso encourage concealrneut. 1Vlany were less worried about than <Jbool informing their partner. Women 'fear being beaten up, mof 0\\'r their head, !heir partner, ' explained a South /\frit'an township worker. 38 Several studies found !hat only a minority of infected women told their partners. INhen they did so, most received a more supportive response than expected, but in a typical instance in Dar cs Salaam in 1999, although ·19 per cent of husbands were supportive and 16 per cent undertook to be teswd themselves, another 16 per cent blamed their partners, 4 per cent ussaultc;d them, and 4 per cent ab;mdonecl tbem 39 Some drove \vhrcs avvay: Ma1.lialemaic f(mnd out 'he wa~ HlV-posilive in 109 i. When she told h~r husb;,nd, he ~:huved ht~r into a pot of \Vater boiling un the stove, t..ralding her arn1. She wenl h) her job selling shoes 'as if everylhlng WiJS okil:y''. Bur llcr hnsband sh,;wed up telling her to go back hmne, gel her things und leuvc l1hn, because how C(Jltld he live wilh >orneone infected wilh !IIV? That was al l 0.00 in the moming. Ar 3.00 1har aiter_nnou she \·\~as fired fron1 her job. -w
Con!iict was e:;pecial!y likely when, as was often the case, the lirst member of a fuwHy 1\nmd infected was a baby, for then husband aml wife might blame
one aHoliler and lbe husband's family might insist on expelling the wife Jest she in!(,d him Yet HlV·positive men were generally even less willing to ink>rm their fl.ti till' ;11 8olswana in 20CJI, 29 per cent of men and 3h per cent of wome11 sJ!Jared their results"' despite the fact that they could normally rdy
8 6 Views fro /II Below upon a wile to care for lhem, from both a!Iection and interest An Ethiopian explained: She tells me that she will always be by my side up lu tbc end of
!H\
Hfe ... This is
because she suspects that she could have the virus in her body too .... Her !"ear lies in the fact that if J die of this disease, she may be left alolle. She is ail·aid that her parents and relatives tnay not want to support her if she is sick. She fears the stig111a
that other people rnay shovv agalnst her as a \vidov\l tvho lost her husband due to AIDS. 42
Evidence t!·om Mahrwl, huwever, showed that the proportion of women thinking it legitimate for a woman to divorce a hu;,baud suspected of inftcction increased as the epidemic progressed-" 3 Rather than inform their partner, infected people often told their mothec especially in West Africa where this was the closest relationship and the one most likely to yield care. Others informed siblings of the same gender or close friends. Women often had particular di!Iiculty in telling their children, because of the pain it would cause them and the pm;sibility lhat might reject their parents. Failure to disclose infection, of course, an uninfected partner, f(Jr it was virtually impossible to chang<" behaviour for a long period say, by insisting on using condoms-- without arousing suspicion. Secrecy obliged the infected partner to live in fear of detection and perhaps to care and support. It ran counter to the custom of sharing health problems with family members. To maintain silence in these circumstances witnessed to the intense fear of stigmatisalion, not only of the individual but of the entire family. H The Aids epidemic accentuated lhe gender inequalities and tensions on which it fed. Adultery, now mortally dangerous, bred fear and distrust in marriage systems with polygynous traditions and double standards. Dming the 1990s fear reduced partner exchange in many regions, angering men fur whom prowess no longer brought prestige. For women, commonly obliged to rely on men lor economic support, casual rdation:;hips were increasingly dangerous and marriage seemed to oiTer even greater security than before. Yet it was in reality a danger, for probably 50 per cent, and perhaps 80 per cent, of women wilh HIV had been infected by their husbands. 11 Despite the danger. the preservation of the relationship was ol'l.eu !lle first priority, for the divorcee or widow was likely to lose access to property and perhaps control of children, vvhose fate in an il.ids-inkcted world was commonly her chief concern. 'Women were generally more willing than men to protect themselves against HlV. Some were sut1lciently strong to live with an infected husband without contracting the disease: \•Vhen he lirst learned he has H!V, he asked me to stay with him, to by him. And because God g;we me a sort heart, I stayed .... VVe don't sleep together, because he won't use cundurns. 1 told hinL '"1\:Iy body is my body, please don't abuse it.' . My children are all I think abonL They are whal l live iur"b
Yoruba women, with unusual economic independence, were able lo insist on using condoms with infected husbands, lmi many women teared even to
Vietvs ji·om Bclotv 8 7
suggest it. J\lorcover. some preferred unproteded sex bc~cause wanted c!Hldren, all the more urgently if they had already lost a child to Aids or early death. A study of infected European a_nd African \VOlllCU in a Pa, hospital found that 29 per cent of lhe but 61 per cent of the Ali·icans would have wished to carry a pregnancy to birthY 'l'l'e';e consideration:; make it ea:-.icr lo underswnd. the silence surrounding the epidemic. Tbesc were honour cultures in which public display or discus~ smn oi sex, except in ddined circumstances, was shameful not for the indivjdual but f;Jr the family. 'In our society,' a young Ct>ngolcse gruduatc
cxplaiiJed.
We du not learn to speak lhe truth. Ptouple would rather hide the 1rnth if it is unpleasant .. Ttl ""Y you !J<Jve AtDS! That would be a terrible shame: tbe bmiiy would uevcr supp~1rl )''oul if a DlHn i.") kncrwn as a good lnan. h(; lviH have Ill. any people depending on l.wu; he cannot novv Sd:Ji' he is skk, !hal will dt~stroy tber:n. tL is a quesi.hH1 oi' ho!lnnr, and l.be rnedlcal i11forrnaUon is in contHct with lhis systern of ho.nour.c1s
Concern not to lmmiliate other members of the family was a major reason people vvilh H!V/Aids maintained silence. Mothers knew, l(Jr example, that any cli!ld lrom a lamily with o known infected member was !ikdy to suller cnwl from other children. To shame the family WdS to rbk alienc:ling those on whose care one mu~;t rdy. Nor was it thought necessary to mlorm caregrvers; us close kin, their care was an obligation. Tact and ,:ourteo;y, equally, dictated discretion: \.\:ho arnong her closest relatives in _t\ddis Ababa is wiHing tu risk uifendiug her, hurting her feelings, siwmlng her, and causing her to lose bee, in order to talk to her dbout the ilnportance of getting tested for the disease? To this day, \v-e are stuck at the crossroad where the Ethiopian beigblcned sense of shame and hltality mcel and mingle like lovers."'
Ev,;n lo ~uggest that a person might have an iucm-abic disease was to d.isplay h~Istility ... Such' discretion o!!en bred loneliness. 'l'vlany people are just dymg mstde m Slkncc, a young Wtlman with HIV warned.' 1 rt also assisted the expansion of the cpll(lernic aud increased its danger, as health workers pointed out. the open discussion of sex, sickness, and death advocated by tbe WHO and its disciples was distasteful to honourable Africans. Only and mHler CJrcumslanccs of grave crisis did it win Afl"ican adherents. convetting sex t Erst lime li·mn a physical activity into a subject of discourse m Alrican cultures, as contraception and feminism had done in the \Vest." Behind this silence, above all. lay tbe fear of stigma The roots of /\ids stigma as n nh leprosy and syphllis -· Juy mainiy in fear of contagion: Even when I !eel like having a beer in the bar next door, llw customers get up, quickly scltie their bills, limidly say go>Jd bye to me and disappear. Others often buy me a beer and when I get up to shake their hands and thank them they refuse to shake 1ny hand ....At horne, '1/Vhen the rneal is ready, no one wants to sit to eat with rnc. Everyouc lnetndges to eat before or after tne; never at the :.;arne tilne. But n1y
88 Views from Below porlion of fooJ is aiways kept for me and is alvvays generous. fdy tnechank refuses to fix rny moped because, according to hiln I rnay have cut Iny~;eJf anLl if H\Y b!ood has touched the engine, he could contaminate himself."
Such fears could expand to absurd as wbcn parent::; forbade cl!i.ldren to attend the funer3! of a p~rson suspected of !\ids or a judge attempted to stop an infected person from giving evidence in court. l\loreover, because the disease was widely thought to be contracted by promiscuity or as a punishment for ii, people with were seen as morally contagious and worthy of contempt: AIDS patients vv'·ho are sent horne after t:ounseUing at AIDS centres in Dodonta [in Tanzania], are rejected and segregated by their families, iHcluding being lucked up in flul-rool houses and treated as people with leprosy. Palients, vvho arc rnainly wornen, vvhcu they retur11 benne to be t.reateU by their hunilles, are refused food, are not given any servkes. are nut even greded and m_any limes when people pass outside these fldt-roor houses, tbey shout insnl!s at them
telling them they are adulterous and prostitutes Jil for the
'"
Fearing such maltreatment, sorne people with ll!V/Aids with intense sensitivity, A Ugandan likened them to wounded animals.s 5 Others sligmatised themselves, felt ashamed, and either hid, su!Tering great loneliness, or believed that everyone !hey met despised them. 'You seem to think that everyone knows about it, that it is written on you,' a teenager said. 'lf you climb into a taxi you'll find people laughing. ·You become uncomfortable. You feelllkc they are laughing at you.' 56 (J!\.en the fear of discrimination was worse than the rcalitv. The c:x~tent of stigmatisation in Africa vmied greatly. Some carei\il ob~>ervers of highly infeckd Ugandan provinces early in the epidemic denied the exislence of stigma while others described it as 'very strong'. The explanauon may have been that individual attitudes and behaviours were diverse. Stigma tended to focus on the vulnerable ,.. poor people, the young, women. and especially sex workers - while mature people with economic independence rarely suffered it. 18 i\fen were cornmonly more tolerant than Wtlmcn, while knowledge of HJV /Aids, e,lucation, urban residence, and higher economic status all increased tolerance. 59 Enquiries in Kagera early in the epidemic showed that rural communities with low HIV prevalence proposed more ruthless treatment of infected people than did urban residems where prevalence was high. Other cvideuce showed high levels of stigmatisation even in highly infected rurai areas, In parts of KwaZulu, for example, it was reported in 2001 that 'people known to be AIDS suHt-;rer:; have had their homes burnt to the ground. Some barely able to walk, have been chased by mobs into the bush .... Teacbers and pupils act together to chase the cbildren awav because they are "undcan".'" 0 Yet although growing experience nf lhe dise~se did not necessarily reduce stigma, that was the genen.1l pallerrL U was first observed in Uganda. 'In the beginning of the epidemic,' a villager there recalled in 1996-7, 'people thought it was contagious and were afraid of catching it. People who 1vere ill were left with tl!e door closed, but this doesn't happen any more.' JVlost accounts agreed that stigma had declined but had far
!l·om Evidence lh;rn Kageca suggested the same."' 'The disease is so common that it has lost mucb of its social stigma,' H was reponed from Zambia in 2003, 'bnt people still do not talk about it publidy.' Stigma was often stronger where the disease was more n;cen! or the prevalence lower. In these circumstances, il took great courage for people with r IlV/Aids to disclosl: tbcir status publicly. Some did so [rom a sense of duty. 'I want others nul lo be exposed as to what has to me ' an wrote in his diary, '[ want tn share my experience with the 'yontlL This is all 1 huvc.' Others, like :\!ada Ndlovu of could not bear !olive a lie: '] made up my mind that this needs to be talk,,d about because it is not right lo fed as if you ure when you are uoL I wanicd to normalise the siluai.lon.' Many limnd di,;closure and empowering: 'the minute you ialk about it you are free'. "3 For some it was easier io declare themselves in public than to tell ilreir families, who might resent the consequences. 'I was embanasse(L I Wr a remedy amidst Ali-lea's great variety or medical specialists. One Ugandan industrialist is said to have ollercd a building worth liS$2 miHion to anyone who could provide a cure. A sociologisl Lit the Aids clinic in Abidjan f(mnd that patients had not only iried every type of treatment - traditional, modern, and religious - but had oltcn tJ h ·--era! varieties of each. 'If l heard that there was a healer in a parlktdar pan of Uganda,' recalled Noerinc Kaleeba, a trained physiotherapist, I vvonld drive th.tre and cmne back vvith a bottle or jerry can of preparation .. Rdat.ivcs vvcre bringing rnedicines by ti'JC jerry can too, and soon there \Vere lnedil'in:~::\ for w-rapping, Inedicines for snHllng, 1nedicines for drinldng, and so on .. Chris tuok all ihe:,e remedies faithfully, alongside lhe [huspilal] medicines he had been given. 67
Some lraditiunal healers proles:.;ed lo be able to cure the disease. One of the more serious was (~hanai;m shrine healer, Kofi [lrobo H. who claimed in l 990 to have cured 60 Aids patients at his 750-palient medical centre, administering herb
9U Vicwsfrom Bel
brief, to make an invalid preparing himself for burial into a human being, hea.lthv in body and full of life.' Less convincingly, Y~.wanina Nanyonga, a T!gand:m woman, dispensed therapeutic mud lo thousands of pilgrims li-mn as far away as Kenya uml Rwanda, leaving a hole a metre wide and two metres deep when her practice was banned, 63 Nanyonga claimed direction by a vision of the Holy Spirit, one of the many spiritual healers and millennia! prophets to emerge in Uganda at this time of catastrophe, Some were humble people dispensing prayer and holy water, but in Kampala the Deo of the Pravcr Palace Christian Centre attended healing sessions in a white Mercedes, while in Lagos the Prophet Tcmilopc Balngun Joshua of the Synagogue Church of All Nations 'claims to heal hundreds of HLV/ Aids patients every Even befurc they return to the to confirm their negative status, the victims bllil their healer, claiming he bas cured them on the spoL'" 9 Biomedicine, too, offered ambitious and often lm:rative remedies: i'v1M-l in Egypt and the DR Congo, lvlariandina in Uganda, Vanhivax in Cameroun, Kemron and Pearl Omega in Kenya, AKB in Tanzania, Herbiron- Tisaferon in Zambia, Virodenc in Africa, and the vaccine with which Dr jeremiah Abalaka of Nigeria to have cured over 900 HIV patients, 'H will only be justice,' a Congo-Brazzaville newspaper commented on MI\JI-1, 'that a malady, of which Ali"ica is suspected to be the oenilor, should be conquered by Ah"icans. Persons rebels against b . l ''(' science are today going to relieve the world's anguis L ' ' Beneath the competing miracle cures rhc epidemic witnessed a between two views of the causation of disease. One was the biomedical view, propounded by the WHO and Ail'ica's \Ncstern-traincd doctors, whkh concentrated on explaining how the epidemic occurred, attributing it to the virus, The other was a moralistic view, expressed in di1Iercnt ways by traditionalists and religious leaders, which foc:nsed on wily the epidemic occurred, attributing it to human immorality. Simiiar conflicts between medical and moral responses to epidemic had taken place in the ninetecmh century in Western countries, In the United States, for example, the dorninant response to the Hrsi. cholera epidemic in 1832 was moralistic: it was the wicked who died, During the nexl thirty years, however, sanitary reform in expanding cilics strengthened the champions of public health, When cholera returned in 1866, it was treated chiefly as a social rather rhan a moral problem, public health measures restricted mortality, and medical interpretations of epid,;mic became uredomimmt because they worked. 71 In Africa this conli:'ontation between ~edical and moral thinking had been out since the nineteenth century in the lives of African medical assistants, nurses, and physicians: It reached a climax in the Aids epidemic, sometimes in personal controversies, as between Dr Malegaptiru Makgoba and President Timbo lvlbeki in South Africa, described later, or between the scientist-politician Pascal Lissonba and ihe moralist-politician Bernard Kolelas in Congo-l3razzaville, 72 The rationalism or French medical traditions made the contest especially bitter in francophonc countries, Benin's ,'\ids strategy of 20(ll, for example, listed mnong its chief obstack:s 'The weigbt of tradition and culture, [the] magical represen1iltion of the disease', along with 'the ferocious and aggressive opposition of the ,:,aholle
Views/rom Iidow 91
Church towanls tbc promotion and use of condoms' 1\-ledical pragmatists also conlronted btJth a racial nationalism that resented \Vcstern accounts of t_he epidemic and a deep popular suspicion of Western medical practices, The :Jrst large r~search programme in Rakcti lmd to be :mspendecl temporarily becaus~e people were nmnmg away from the teams of researchers' whom suspecteLl of their blood, a fear shared in Kagera. On World Aids Day in 1988 the Dl,;lrict Medical Ofl1cer in M<,;aka had to <;nnomJce publicly that doctors did nol give Aids patients lethal injcctio!ls, In 1994 an watched Malawi's ancient mJIW dance society satirisc. doctors equipped 1vHh carnera am! portable -telephone reporting that lhcy had found wasted villagers sick with Aids 71 Ironically, the very sophistkarion of the scientific of mv -- Ihe fact that doctors knew almost cverylhing about it except how tu cure it --made their knowledge more dillknlt to cunvey_ The notion of an invisible virus mi>1hi. be presented as a tiny insect Ethiopians tried lo explain a littul but symptr~mless disease by the analogy of termites hollowing nul a tree before it fell, yet manv doctors fuund it impossible to convey the profoundly alien idea that peopl~ 'are undt'rstood as ill before they are ill' 75 Some patients thought the doctors were lyiug. Even if their ability to test liJr HIV might give them credit, their Inability to cure il, reinforced by their obligation to say so, gravely damaged their prestige. The conclusion of the Durban Declaration of 2000 - "Science '.vill one day triumph over AIDS, j tlst as lt did over smallpox' - sounded like bravado. lt certainly sounded that way to traditional moralists, for whom the epidemic was primad:ly an evil consequence of vVcstern innovations, of towns, prostitu-tion, prumbc;,,. 'y
Bot:svvana~s
nwdical anthurilies championed the WHO's safer sex message - Abstain, Be laithli.l!, Condomise -- against hostility to public discussion of sex and the perceived imnwrallly of condoms as unrJeitural, distasteful, and likely to encourage promiscuity and spread disease. Against this programme many of Botswana's influential traditional healers sel the belief that HIV /f\ids was in fact an old 'T:;wana' disease reactivated by neglect of Tswana' culture and morality, This disease was boswayadl, hithc:rto caused d1ielly by having sex with a widow or widower whose year of mourning had not been ended b-, ritual pnriiicatioll. The diagnosis offered an explam.tion of why an individLt~ had been infected, gave a reassuring sense that the ~,;pidemic was potentially controllable, amL bccat~sc the infected person might not have known the condition uf his partner, reduced the implicit guilt and shame. Analogies between H!V/Aids and older diseases incurred through violations of sexual prohibitions were throughout southem Ali:ica, !he
') 2 Views }rum Below
counections were generaliy disputed by other healers who insisted that Aids was entirely new. Similar dispute surrounded possible analogies with mwmJza disease in Gabon and Congo--Brazzaville, cilira among the Luo of Kenya, and wnewni11 in Ethiopia. Identical or not, in all these cases Aids and the old diseases were explained in moral terms as almost automatic consequmces of sexual irregularity. By contrast, the use of indigenous religious resources to protect communities against HTV has seldom been described outside the DR Congo, perhaps because HIV had eo;!ablished itself silently before Sth:h protection could be mounted. A second explanation of HIV /Aids in indigenous terms ascribed it to \Vitchcrall. This was common early iu the epidemic west of Lake Vidori
Views (rom Below lJ ·~ 3 50 UOO.'" Tlwy could olier the personal atlemion that patients sought fruitlessly in ovacrowded modern institutions. As a patient explained: v\'be.n I can, con1e to stay with a t.l aditional healer. He prays fur me and warms and hl, . :>kr that lw puts over my whole body. J had a big ulcer on my back and Lhe hc:,iier applied h~rbs that took the sore away, 'l'be bea!er allows me to drink hospital 111edicine for my TB. He prays Lu God, ndt tbe anceslors, for llw cure. He will be uble to make me bdler but he will not be able to cme the virus, 85
As this quotation shows, although healers were individualistic entrepreneurs, tbey were often kt~cn to incorponde mndern practices and gain olllcial recognitiou. One successful specialist in Cote d'Ivoirc maintained a 1 00-bed 'ho,;pilal', a hostel for visitors, a pharmacy, a plantation of medicinal herbs, and d factory to process them. 86 \!Veslern trained doctors bad long resisted merging of the two medical systems. Mernberc; of the Nigerian Medical Association declared t!Jut recognising traditional healers would be like licensing kiJlers. 87 But some nationalist regimes, led by Zimbabvve in ! 98 I, ll«d given them legal recognition and many moved in this dirc;ction during the Aids epidemic, arguing, in Museveni's words, 'that since modern medicine hns no answer to this problem. let us encourage our people to carry out their own research either by scientific nwthods or by empirkal obcrvation'. Even ~ligeria admilkd that traditional healers might be useful 'when armed with accurat
':J4 Views from Be/o\\7 sexual intercourse that customarily inaugurated the new - a custom itself offensive to Chrisliaus and many widows. In sonthern Zambia. where ihe custom was widespread, the ritual intercourse was largely replaced during !he 1990s more symbolic acts. despite opposition. T11 the Nyama province of Kenya the issue became the lilcus of deeper antagonbm between born-again Christians and t.raditionalists, one hlaming the custom and the other its neglect for the area's high HlV prevalence. Some; suspected that moral opposition to the custom concealed anxiety to evade responsibility for supporting widows and orphans."' Similar controversy often surrounded other potentially dangerous customs such as initialion rites and promiscuous sex at weddings or funerals. Ethiopia crcaled a special National CommiHee on Traditional Practices to handle these issues. Bnt there were also vigorous aliempls to restore abandoned customs thought to have restrained promiscuity. Uganda attempted lo revitalise the senga, the father's sister who had given sexual instruction to adolescent girls. Senior Zulu women, with royal approval, launched a campaign in ! l tn restore the testing of unmarried girls' virginity, a campaign denounced hy South Africa's Gender Equality and Human Righls Commi~J.ions bur quite widely accepted by girls as a source of solidarity and respect in a dangerous environrnent. 92 1\lthough Christians and traditionalists mighl quarrel over customs, they generally shared a strongly moralistic view of HIV /Aids. lt was mainly from such religious perspectives that Africans viewed lhe epidemic, as they viewed other large issues of the time, especially where political leaders seldom took strong positions. 93 Many initial Christian responses to HlV were as hostile as secular reactions. Some Protestant churches in Kenya refnsed to admit people with HIV /Aids or to bury those who died ti-om H. A Catholic priest there is also reported to have refused to conduct funeral services, :mying that 'the church might be seen to be encouraging the spread of the disease' These extreme reactions passed, but people with HlV/J\ids continued to complain of discrimination in church and moral condemnation remaineJ strong. especially perhaps where a harsh protest;:;ntism was superimposed over traditional moralisrn. 94 From that perspective, in the words of an independent church leader in Botswana, HJV I Aids was 'a punishment sent by God, as Sod om and Gomorrah. Today we have all kinds of unnatural things - homosexuality, Satanist cults who practice cannibalism., ritual murders, bestiality. Christ is !he one who said that those who do such Ihings are cursed already,' A study in Somh Africa found that srernly moralistic pentecostal churches were Uw most successful in disciplining their members' sexual behaviour. 9 '; The larg"r historic churches, by contrast, generally avoided a cn1de providenlialism, as those in Zambia declared in 1988: vVe may admit that in many cases AIDS is the resull of moral faults, without falling into an O\/Cr-silnple view that the cpide1nic is a direct intervention by into human history to punish us for sins co1nrnitted. \Ne rnust rather recognise revoiJ of nature against bdng abused and ask ourselves vvhat God its Author is saying t.o
us through this plague which in Hio providence he has allowed to alllicl
Views (rom /Jchilv 9 5
OtlH:r religions also struggled to respond to the epidemic. ln Botswana the Scdinw heeding cult was swamped by supplicants lin- pruteclive amulets. which were refused to advanced cases."' The most striking use of indigenous religious ideas. blended wilh ChrisHanity, was the movement in .vlalawi in 1994-·5 surrounding Billy Goodson Chisupe, an elderly adherent of tbc Providence Industrial Mission, who dreamed that ancestral spirits inslruct.e,J him lo nsc tree bark to make a cleansing medicine to cure HIV/Aids. Recipients called it mclwpe, a generic term for such medicines in this area. For success it l-equired ihe recipient to abandon promiscuity. By May ! ')95 perhaps 300,000 people had made pilgrimage to Chisupe, including stalf of the Aids Control Programme: As one
middle-class prufessimwl mnsed, wouldn't it be: wonderful if
mclwpe did
·vvt~rk! it would pu! I\.falcnvi on Hw world rnap; it would shovv \·Vesterut~rs
1\,Jafawi had son1ething
t1J
thr.:.t
offer. i.lwt IV1alawian traditional Inedicine wasn't so slupiLL
'!'hill rl;cy weren't so stupid, she also seemed tu imply. Of COlii'Se, she udde,l, il was achuittedly only a wild card, bul afraid as she w:" shce mighl be ln[,;ded with HTV froln her li;nner husband, ~he radiakd hope. 98
Muslims, too, had to respond to the epidemic·. ln remote areas the reaction was probably oilen harsh. 'Encountering HlV/A!DS is a sign of punishment from ·\llah,' a leader in soulbern Ethiopia declareJ. 'A victim L.; believed to have contracted il because he/she broke Allah's guidelines .... Helping a patient could be justifying his/her acts.' Others were struck by the low HTV prevalence in many Muslim regions" Abbasi Madani, the Algerian fundamentalist leader, stressed that rh,.~ skills of modern medicine were helpless against Aids, for which the only remedy was moral reform 9 " Yet Muslims were also active in pnbltc education. When Dr Babatunde Osotimchin was appointed to !wad Nigeria's National 1\ids Commission, his tirst action was to gain the support of the Sulli.in of Sukuto, the country's most influential religious leader. Cooperation b
':)6 Views }run! Below
realised that the epidemic both medical and moral responses. !\:loreover, as wilt be seen later, lhe Christian churches had from the llrst provided care for those suffering from the disease. ln 1948 Archbishop Bonifatius Haushiku launched Namibia's first national church-based programme nf prevention and care after himself undergoing training as an /\.ids wcrL ... '"' Two issues especially divided religions moralists from medical pragmatists. One concerned the use of condoms, over which there was extreme diversity of opinion and practice. Homan Catholic leaders generally denounced them as contravening the divine purpose of procreation, encouraging promiscuity, and acluaily fostering HIV. They were legitimate only between married couples where one partner was infected. Protestant fundamentalists generally agreed, as did the Ethiopian Church and almost all Muslim leaders. In 1996 Cardinal Otunga and the lmam of Nairobi's central mosque jointly over a public bontlrc of condoms."''' This opposition led t,J numerous coul\!lntatiuns with medical and social workers. 'We go around teaching about condorns anJ encouraging !hem to use them if they can't avoid sex. The [Catholic] church i(J!lmvs in onr steps tell.ing people those who nsc condoms pave their way to eternal hell,' a District Officer in Raka.i complained."' 5 lTnder this pressure, and because el1lcacy of condoms, llganda was slow to popu!arise them and long banned tbeir advertisement on television and radio. Similar controversy and hesitation ruled in Zmnbia, where the born-again President Chiluba prohibited television advertising but his successor restored it. 10' 1 (;enerally, however. medical opinion prevailed and most African states mounted condom promotion programmes, although they preferred to ld American social marketing organisations operate them. As the director of Senegal's Aids programme put it, 'We lel the Imam talk about religion and fidelity. while we talk about condomsq"; Nor was religious opinion united. The Anglican church in Nigeria supported use of condoms, as did some branches of the Lutheran church and the Ali-Al!·ican Conference of Churches. One representative of the Ethiopian Church described its attitude in practice as ·not see. not hear'. 108 That was also true of some Catholic dioceses, apparently including Kinshasa and Kigali. Some casuists argued that in the circumstances of a generalised 1\ids epidemic, condon1s might be a means of protecting liieo rather than de,troying iL 109 Similar conflict surrounded sex education .. often cailcd lik skills education - in schools, where moralisiic pressure was more effective because il generaiiy had the support of parents, who viewed such instruction as encouraging promiscuity, and of many teachers, 1Nho limnd the subject embarrassing. Uganda was the pioneer here as part of its general policy of openness, bui plans to l!Jllow suit in Kenya were vetoed by President Moi in response to religious opposition, while in Tanzania, Zambia, and Ethiopia controversy obstmcted the incorporation of sex education into the syllabus well into the 2000s. Rwanda, Botswana, and Zimbabwe, by contrast, had e:densive coverage, but lll 2002 no Aids reachers were yet active in Senegalese schools. Iu equatorial Aii:ica the Catholic church introduced ils nwn programme of 'Education for life and love'. UNAIDS reckoned that in 2003 nearly 60 per cent of primary school pupils in sub-Saharan 1\frica received basic Aid~; educaliou. uu
Viewsfi-<•m Hdow 'J 7
moralistic response ro Aids drew strength, in eastern awl southern Aliica from a pervasive sense that the epidemic was only part of a wider crisis afflicting late tweuticth-cen!ury Africa. a crisis combining destabillsmion of indigenous cnllures with failure of the modernisation expected a! independence. Meja Mwangi's noveL The Last Plague (2000), captured this sense ,,r crisb, and Cubricl Rugalema, pedmps the must perceptive analyst of the rural epidemic, observed it in Kagera: Vv'bi11" is dislinclivc Lib~JUt tiJe lt)Cal vievvs ... ls the integration lhc disease vvHh . . .vide.~, . socio--economic problerns, c1s oppt)Scd to the prevailing scientific approach in whkh HlV is St~en to cause ./\JDS and cllnscquentl_y adult morialitj.~. \'ii1ugers are uut reductioJ 1bts. Their view is i.hal t\ IDS and its eilects caunut be separated from the wider soda! and cumornic environtuenL 111
'fhis was in a tradition of Afi"ican thrmght, which had comrnoo!y a!lributed famirw or epidemic to the breakdown of the social and poiirical order. H was also in a tradition uf religious tho11ght, for some Christians saw the epidemic as a prelude to tbe end of the world. And even a medical pragmatist like Kapita Bila, perhaps the lirst man to wltness the epidemic, diagnooed a crisis in the very modernity that his medical skill embodied. 'The Aids of the late twcntk:th century,' he wrote, 'judges our society, our morality, and the direeliun of our economic progress. Today's society seems to have attained the level ,e~· cvolntton required l(x its own deo;truction.' 112
NGOs (; the E:•oluUon of Cw·e 9':J
10 NGOs
fy the Evolution of Care
J
ust as ·t·l.le.: nat.ure··· of tbe immw.1ouclicien . cy virus chiefl).' determined It.,; pattern ol expanswn. so Jl also compelled to erect particnlar I. kinds n! defences Whereas easily and rapidly liltal diseases like the 'three-day flu' of 1918 had demanded brief, urgent, and predominanlly medical responses, the years of incubation and months of terminal decline characteristic of HJV created an overwhelming need l(lr long-term care. African governments, impoverished by economic depression and s1ructural adjustmeut, could not provide this. Instead. late twentieth-century culture oHercd another model: lhc non-governmental organisations aircady actlve both in global relief work and in many smaller welfare funclions in :\li'ican countries. Along with govermnent bodies, NGOs were largely responsible for preventive work and the support of HIV-positive people during the incubation stage. Initially they also attempted to care for those sick with 1\ids. but the numbers quickly overwhelmed them and instead this burden fell chielly on the patients' families. It was a cruel burden. for in their final rnonths of illness people with Aids needed much intimate and distressing care. Family responses varied. but predominantly they - and 'lhey' meant chiefly women -- provided care witb a selflessness that was one of the most heroic features of the epidemic. This was not unique to Africa: Aids epidemics everywhere evoked remarkable displays of compassion 1 \Nhat was unique to Africa was lhe scale of the response in " continent where HIV/Aids was. in this as in other senses. a l~nnily disease, Had Africa's family systems been less resilient, the impact of the first Aids epidemic cnuld have been terrible beyond imagining. The scale and diversity of NCO action defy sumnmry. ln 1992 Ugamla already had over 600 NCOs involved in Aids work; by 2003 there were about 2,000. Kisumu, the provincial capital of Kenya's heavily infected Nyanza province, had over 200 NGOs and community-based organisations combating Aids in 1999. 2 Senegal was also rich in organisations, over 700 receiving public subsidies during 2004, the same raunber as those alt1liated to Nigeria's Aids programme. South Africa had a vigorous NGO tradition, inherited especially frum the anti-!\partheid movement, and counted over 700 bodies engaged mAids work as early as 1993. Ethiopia, by contrast. lacked a
tradilicm and had suffc:n.:d bdween 1974 and 199! a government with tola!ilarh,n aspirations; in 2002 had only HJ:l NGOs concerned with Akk 1 The number in the DR Congo is unknown. but none attracted wide attention. NG\ls everywhere were a jumble of established national wdfare bodies (church organisations. Mus lim charitable societies, medical -related associations like lht: Hcd Cross), international relief agencies, and locally constituted organisalions uf all kinds, operating at every level down(,) the individual Iown or Must do not appear to have grown out of existing networks aud organisations but to have been created ad l1oc to meet immediate needs, Some lleld lo a single function or target group, Others lrequent!y began with such a func1 ion but branched out to meet a diversity of needs, tending to movcc from prevention towards care as the itself evolved" Others again were vast multi-purpose operations like v\'odd Vision, which in 2000 was engaged in projecis h1 2 5 African couutries.·-1 T'he rnost conunon n1otive for involvement was religious. followed by simple compassion, personal experience of HIV i.n oneself or one's associates, desire for rewarding employment mniclst a scarcity of opportunities l(Jr educated people, and doubtless the hope of access to donor funding. Perhaps only o1·ganisations concerned with the rights of women or people with [Jl \1 j t\ids had substantial political sims. NGOs were both a consequence and a canse of the depolit.icisation of the epidemic Atrica's b'"st-known NCO was The Aids Supporl Organisation (TASO) in Ugauda, 'the first indigenous NGO in Africa to respond lo the needs of people living wilh !JIV'.' H was f(mnded in 1987 by Noerine Kalecba, a physiotherapist whose husband had died painfully of Aids, wilh Elly Katabira, who needed trained counsellors for his newly opened i\ids clinic, and a gronp of acquaintances, nearly all of whom soon died of the disease. They aimed to combat the prevailing stigmatisation and neglect of people with Aids by kaching them to 'live positively'. As Kaleeba put it, 'We emphasised /ivinu rather than d'yillfl with i\lDS.' 6 IHitial linancc came largely from a British agen,:y, Action Aid. and TASO remained heavily dependent on overseas donors. who provided 97 per cent of its income in 1999, 7 It~ oihccs were generally at governmeut medical institutions und some of its techniques wen: learm:d from similar bodies in BrH<1in. Hs methods became a model for many parts of l he continent. Hs counsellors generally met clients before and after testi11g lor Hl\1. If the test was positive, the client was told its implications. eucuuraged tu in!(nm at least one trusted person, advised on how to protect healih all(! practise safe sex, guided to plan purposively for the l'uture, inviled to participate in a supportive post-test group of infected people, given access ln basic nH:dicctl rare, and if necessary with small quantllies of J(md and other assi;lance. Many clients were trained as counsellors, which became the most important element of TASO's work without, as happened with some other NGOs. replacing its direct care l(i!· large numbers of clients. In 2003 TASO bcld 75,26) connselling sessions. By the end of thai. year it had supported ovt:r 10\J,OOO people with HIV /Aids, about two-thirds of them women, and was the largest organisation of iis kind in Ati:ica, although it reached fewer than 10 per cent of infected Ugandans fi·om its nine regional centn~s. having deliberately limited its expansion in order to maintain its
I UO NGOs
(?·
the Hvaluticm
u/ (\ll'e
etl'ectivencss.' TASO made an intcres!ing contrast INith ib closest Senegalest: counterpart, the National HlV /Aids Alliance, formed in l9'J 5 as lhc a gem of an international support organisation, providing services similar ld TAS(J's bnt operating through branch curnmittees (eellules) dominated by state \\:,,,·arc employees rather than private activists and people with HIV/Aids, with whom there was often considerable tension." To provide counselling and train counsellors were among the ilrsl tasks taken up by NGOs in many countries. ln Zambia, hospital staiT in Lusaka established the Kara Counselling Trust in 1989 to complement testing facilities. In 1994 its director described ihe counsellors' difficulties in dis· cussing sexual behaviour wilh their clients, explaining the operation of the \'irus, and handling their own fears of infedion. Of the 1 0 l counsellors she studied, only 24 had themselves taken a test and only 2 7 had cFer used " condom.w To meet these dill1culties, the TrnsL like TASO and many similar organisalions, increasingly concentrated 011 training people with lllV /Aids, who were generally thought to make particularly sympathetic and convincing counsellors. In the field of preventive education, early priority for NGUs, the pioneer organisation in Zambia was the Copperbelt Health Education Project (CHEF), created in 1988 by a doctor whose imtbility to cure HlV/Aicls convinced him to concen!rare on trying tn prevent it. 'Our work,' he later wrote, 'was based on the assumption that ordinary people, once illformcd about the disease and how it is spread, would be able to make the necessary changes in their sexual behaviour. VVe have since realisc:J that this assumption was somewhat simplistic. but it seemed reasonable at the time.' 11 They were especially concerned to combat lhe negative character of official Aids campaigns, adopting the slogan, 'We spread knowledge not t<~ar.' vVith Norwegian financial aid, CHEP became known !or the sophistication of its mass education techniques, ranging from literature of all kinds through radio and television programmes to extensive use uf peer educators, mainly targeting youth and high-risk groups. Special conl:ern J(Jr these was another NGO priority. In 1989 a Nigerian doctor and his sociologist wife founded Action Health Incorporated, initially at their own expense, to spread Aids information among young people from a youth centre in northern Lagos. \Vith external funding, il created Heahh and Life Planning Clubs in !oc·al schools, trained hundreds of peer educators, and took the lead in producing guidelines for sex education in NigeriaJ2 Another large! group were sex workers, addressed, for example, by Tasintha. a Zambian organisation, formed in 1992, that conducted community education in 'chools, helped sex workers to protect themselves by using condoms and seeking trea!Tnent for sexually transmitted diseases, and in particular sought to train them in vocational skills by which they could make alternative livelihoods. By 2000 it had trained 5,ll05 sex workers and could provide instruction in textile design, processing, and printing; knitting, crocheting, and embroidery; design, tailoring, and sewing; producing building materials; sisal weaving; baking; and book· keeping.' 3 Sex workers were naturally a special concern of lhe women who made up the bulk of NCO activists. Top leadership positions were often held by men,
NGOs b tile Hvolutirm of' Care 101 but ti ,t:; was not lhl: case with the many organisations designed to care for and advance ille genenll interests of wonwn with HJV 1Aids. Beatrice Were created the Na!ional Community of Women Living with £\ids (NACV'/OLA) in Uganda i(Jr the women she L~i.lred for at Nsambya Hospil<,l, ali.er testing pm;ili\'e hcr,clf in 1991. By 1'J9'J it cl
1 02 1\!GOs 6 the Evolution of Cure the state concentrating on !he medica! ;,phere 17 Other governments chafed at theoe constraints. The ANC regime in South i\11 ica largely excluded NGOs ·often wbile·controlled -from the policy formulation in which they had shared before 1994, leaving them to concentrate resentfully on grassroots work. Maii tried to confine each NGO to one cc!cle, which it w,mid serve under government contract. 18 Jn 201H TIN AIDS rejected pressnre lhJm s.mthern African ministers to channel allli.mds through guvcrnmeuts rather than direct to NGOs, no doubt !eariug that it would intensify cmruprinn and political manipulation. During the 1990s. as the number of infected people; passing from the incubation period to the stage of Aids increased, NGOs focused inaeasingly on care. Initially, many tried to provide 1hat care themselves, but the need soon overwhelmed them and most withdrew to a roie of supporting the family members t•Fho did the actual caring - 9(J per cenl of all care in Ali·ica. according to a UNAIDS estimate in 2004. 19 That primary caregivers were family members was true of Aids epidemics in other continents; lhe remarkable features in AIHca were the scale of the task and the dilficulties under which it was carried out. Everywhere in the continent, it appears. families had a unique and morallv inescapable obligation to care for their own. 'l kn'c no choice, she is m~ sister,' a man in southern Malawi explained, 'the world would laugh at me if I did nol take care of her.· This was doubly true of Aids, for the trl:il; was so demanding: 'If it is not your relative you can't do it.. .. II need;; cuuragc .... A mere neighbour wil! not agree 1~o care.' Such physical care was indeed ofren the definition of love: 'to love a relative means not co be disgusted with patients' dirty things' .111 But this widcsprcad feeling left l wo ques1ions open. One was whether the wider comrmmily also bad a caring role. That vJried between different regions, according to different circumstances, aml at di!Ierent times, for increasingly, as the epidemic worse11cd, charitable people realised the primary carer's need for community support. The other question was what conslilnled the family in this contexr: whether it was those who lived together, t!Jose who provided reciprocally for one another, or lhoo,c of the same blood. The evidence from (;hzma is particularly interesting. ln l ':)92 foseoh Anarli interviewed pal icnts and caregivers in several parts of tlw coumr.y. i\ few patients had been abandoned in hospitals by their relatives. Eie\'en per cent were caring for themselves. Only 9 per cent were being cared klr by their wives and none by their husbands. Almost all the rcsl were in the care of blood kinsmen, above all their mothers, who were generally most sympathetic towards thlOm. Sisters and (less) brotliers were also relali\Tly sympathetic but were not expected tu bccmne primJ.ry caregivers. Care could be rudimentary: ln one example, a young woman aged 20 years had been abandoned by the whole family hut her nwthcr. She had her own drink1ng Cltp, plates, and a bucket flJf WOm and food was passed to her under the door post. The fear of the members
N,;(),; (71irt Evoluiion of Care l O:l
"f tbc col!ummily is !hal tnowledge of !he presence of an AlllS-infeclcd person ill the lmnily may result in others shunning il awl. !hereby, rel!tsing to ld their n_:L:n_i\'es 111arry intu the a1ledcd faiuily. 21
Th1s was a soddy where individuals always remained members or their natal dan;; and whcrl; marriages were easily bruken by circumstances much less disastmus tllan HIV/Aids. 1\'lureover, as Anarli wrote, 'AIDS !ends to w.caken relationships with non-relatives. The family turns iu on itself as neighbours reduce contacts with irs members because uf the shame attachtd to the di~case.'" /uwttwr anthropologist remarked, 'The sucial "safety net" once oflcrcd by the corporate clun to it:; member; appeared lo be undergoing 1l docs not seem to provide the individual with the protection cllld support it ont:e gave.' 25 Yet 80 per L:enl of tbc patients expressed satisfactiou wirh thdr cure. Four years later an anthropologist working in rbe ll.saJrl.e arca Gf Chana described less satisfied patients but a broadly similar situation stressing that people with Aids ul\eu received only reluctant care because their: youth cunlradicled the inlergcncratioual reciprocity on which care normally rc:otnl. they could nevertheless rely upon the kiudness of their motlwrs. 1\!ore distant rehttives contributed little. Tile quoted an 1\sanle pr.werb: 'The is like a forest S!i111ding afar it looks together, bur when you gd closer y,m see that each tree is di1Terent.' 1 ' Both lhe importance and the limits of reciprocily emerge !rom reseatdl in l'l9'l in the O;ul~po area of Benuc stc;te in cemral Nigeria, the most severelv inLned part of the nmnrry, with 25 per cent antenatal prevalence in what w;c;~ still the early stage of an epidemic. The rescarcbers idelllilicd lhreG broad attitudes towards those with Aids. The wider Joc:al community wus strongly bo,,tile, as we have seen, to those with 'the Abuia disease', supposedly co 1;. truckd as sex wurkers or migrauts in the capital bt'fore they 'come home almost dead', bringing nothing but their disease to endanger and batkn upon the area. (]user neighbours were somewhat less hosHle hnt slill unwilling to prm·1de care or even lo v[sit: 'Once AJDS is confirmed normal interactions with l!le family arc curtaikd. llsnal practices hke asking for drinking water, fetching hn:, ur even rassing through lilt~ ccnnpuund slop.' The family res<:nted Lhis sligr11a, complained of the burden of caring, and did everything possible to conceal their sick member, but 1hey did ncvcnbdess provide care: '!I' you look a( people's behaviour, you will nor accept lhem but when yours is sick, he or she CllHJO! be thrown away like dogs.' Moreover, fpr the family !he shame of not cariug was worse tha11 the shame. of Aids. The care it guve: however, was sometimGs less than an invalid might expect. for Aids patients might be isolmed. ldt alone, and visited imly to serve food or when they called f(Jr assislanclO. The patients spoke of themselves as the living dead. The rcasons why care in these West Afril:an cases was grudging were perhaps t bat prevalence was still relatively restricted there, disease was widely at!nbwcd to promiscuity outside the community, and m;Hriage was fragile. at least ill mnlrilincal Ghana. By contrast, Angela Chimwaza's study in 1000 of anutl:cr 'lineal area, in sourhern Malawi, suggested <~ higher level of at:ccpi.ancc, lH;l least because tire diseao>e was longer established and more
l 04 NGOs b the Evolution o{ Car.:
widespread. Chimwaza stressed thal care was immensely burdensome, fell overwhelmingly on one female relative usually mother or wife ~ but was neworlheless accepted resigneJiy in rural areas as a seli~eviclent obligation uf kiuship: 'there is nothing ! can do but look alter her'. 2 " Yet she showed also that caregivers did receive a degree of material and moral (but rarely pltysicai) support lrom community members, especially because the cummuuity's core vvas a gmup of related women. '\Ve find that the social saldy net is still functioning.' she reported. 'There was iillle evidence thal either patients or caregivers were s!igmatizcd. Other studies in Malawi broadly confirmed these !1ndings, some showing a high level of support lhnn friends and wider kin. 'We eut from tlte same plate.' one patient explained, 'they come lo visil me whenever they see me sitting alone, they come to cheer me up.''" A study in south-wc~tern Uganda, earlier in the cpi,1cmic, showed a broadly similar but perhaps less generous paltern. The lllirty patients received care chielly from their mothers, sisters, or wives. In thirteen cases the main caregiver rccei1·ed no assistance. whlle in fifteen there was help Ji·om close relatives, usually female. f'.Jeglect conlributcd to three of the seventeen deaths durlng the study period. The described the extended family in this area as 'a safety net with , a description probably applicable very widdy. Across the Tanzanian border in Kagcra. Gabriel Rugalema found. similarly, that 'Illness in Bubaya is perceived as a famiiy alfair and thus the rest of the village community has really no input in it besides vbiting a house hold with a sick person to wish them well. Care provision was and continues to be shouldered l1y few female rdatives.' 30 TJd.J
NU()s 6 the EFo/utwu uj Care 105 outpatient tre<~lmenl centres (ceutres de traitt'IIWIII am/mliltoire) partr;e.red by local welfare assucialions in ten other \.Vest and North "\fricdn ciric,, l·> Ye! rhis modd could not serve the countryside or the bedriLlden who mack up an increasing proportion of people wilh HlV/,\ids in eastern and southern Africa. llfany of lhese - ns many as 94 per cent in Ethillpia in .201!3, it was never'" d modern medical treatment at all.'' Some melhod wa~ weeded lo rt:uch tltust: dying in their homes with only the unskilled care of tbcir families. The first attempt:, to do this were made dming l9W7 by medical workers iu :Lambi<J and Uganda. Hospital-based home e<Jre, as it became known, had precedents in the treatment of tuberculosis and leprosy patients in the commtmity and was extended to pedple with Il!V;'i\ids in southern Zambia in 198 7 by the Salvation Army Hospital at Chikankata, which t(JUnd itself unable to provide beds fur grov,'ing numbers of patients. By leaving patients in their homes lu be visited a rnoblle medical team from the hm.pital, H was argued. the 'yslem could treat larger numbers more cheaply. c;xpand loc<1l knowledge, rcdu,~e stigma, !(Jsler fhmily lik, and allow patients to die in tile home environment which t.!Jey preferred to hospitaL 'lu 18 3 cases counselled in l9tl7.' it 1ns reported, 'only J(Jur patients opted fur hospital care rather than hun ...:-basLd care.' The cost was mel largdy by external donors. The Chikankilla scheme was regarded at t!w iime as a model communiiy-based uc1h ily. 16 By l 99 3 some 22 mission h,Jspitals in :Zambia were muning homebase,! Glre programmes. although nol ali on the same pattern.'" l\Jeamv!Jile, such programmes were also launched 1987 by two major Catholic hospitals in ligandil: Nsambya, which served mainly the poor of Kampala nnrl its en vi runs, and Kitovu. in Masaki.! dis1ric:L 1' Tbey were imitated by huspilals at Jiuja in eastern llganda and at Rubya in the Kagern region of Tam:ania. The Catholic hospital at ,-\gomanya in tl1e highly infected Eastern Hegion of Glr to have set up West Afi.ica's first scheme of this kine! in 1988. i\ group uf hospitals in K waZulu established a similar programme in l ')91 on lh,; modd of Chikankata. 59
or
Very soon, however, the number of parieHts un,! Ilk cost of trealmt'nt made even hospital based home care impracticable. ln lhe countryside. especially, it was expensive itt transport, w!Jicb took up to three-quarters of the Iota! cost. and in stall' tirnt', three-quarters of which was oflen spent travelling. The figure':> varied, but one home visit might cost as much as three lo six days in lwspiral, even leaving aside the cost to !lle family caregivers. In the early 1990s both Chikanbta and Nsambya were finding the expense insupportable, as very soon did the KwaZulu projecL 4 " Meanwhile the need became ever more urgent '\V!Jen you visited houses,' a pioneer relief wurkcr wrote uf Rakai in 1':.!8'1. ·... there were dead bodies and hopeless relatives not knowing what to do, full uf fear and hurl and shame.' 41 TIJC alternative developed in the early l 99(Js was lo replace or supplement ltw lrc.~"c:lling health stall' by trained lay people based in 1he community to acr ito
J Oii Nl;Os b tl1c Evolwion of' Care patieHi ::mJ family. Moreover, the new system could be implemented by NCOs no! based in lwspilals. lt could even be itmplemented hy community intermediaries themselves, perhaps by creating their own NGO. Eilher way, il released a force of largely female religious charity and community spil it that broke through Ati:'ica's widespread trudition tbat caring was almost entirely a family responsibility. 11 became also a community responsibility and the result came to be known as comm1mity·bascd hom(o care, a term used very loosely lo embrace both systems run by large NGOs and those launched by com·· munity members. liNAlDS was larer to describe it as 'one of the features of the epidemic' .B The precise origins of community-based home care are hard to locale and probably diverse. T1\SO's activists, often themselves people wilh HIV, began lo train and support family carers after the organicmtion's foundation in 1987." The hospit<J!s unable to sustain their initial schemes also helped to pioneer the new procedures. By 199 3, for exmnple, the more than ,1,000 clients of Nsambya's home-care system were supported by volunteer community caregivers backed by the mobile health team: The cornnnlniiy make~ sure tbat ure t-ak0n td tht~ hospital, lead::-, mubik n10dlcal tean1s lo those ·who are too sick to traveL and even collects nlorky every month to feed the poorer patients am] help them wa'b and bulhe. Their devotion has, it JS rcpurled, bdped dodo1s al Ns~unbya reach 3 -4 tinlCs as n1any AiDS patienb as rhcy couJd have vvilhout such a co1nn1unity supportY1
This system illustrated the continuum uf care from family ln medical institution that became one of the principles of community-based home care. Chikankata moved in the same direciion slwrlly afterwards. but the maiu pioneer in Zambia was the Catholic diocese of Ndola, which in l 99! iuiti<Jtc:d a programme that engaged 500 volunteer community workers in 25 luwnships al the end of the decade. Like many programmes it cared for ail forms of chronic sickness in order to avoid siigmatising those wilh lllV/ Aids." 6 lls counterpart in Zimbabwe was the Family Aids Caring Trust (FACT), founded in Mutare in 191:\7 on a Christian base and active in all branches of welfare vvork connected with H!V, including a hornc;-based c
1\!L]()s b rile HvollliiOII
or Care
107
f'!Jcy visit in groupo. So they ccm divide the !asks - keeling or buihing patients, counselling, cuHecling \VOod and vvater, or doing laundry -· mnongsl t.hernselves. Sumelimes. L1milies kave all the chores to them .. These three volunteers say lhcy haven't tdken a break frorn their vvork since they slarkJ. They don't fear possible infection during care'. and they're confident about what lhcy do. '\Me !.ave the necessary materials like he<Jvy duty gloves, disposable gldve::; and gowus, bu.t we do ncea nla.sks,' says Sesiyane. TIJcy love the work, they say. But they feel helpless and disheartened by the poverly their patkuts lih:~ in.<± 9
i\lauy activists hoped to be paid and it was oflcu necessary lo iul.ruduce inceHlivcs tu sustain early enthusiasm. But lherc were other rewards. 'Since we began volunteering other people look ul ns di!fercnlly,' a Mmambican community worker explained: Ut1cn, Vv'ben \'1/C pass SOIUeOHC Oll a lVU!kvvay hi tbe burrio, th~tt person tvi!l give US a speditl gesture of Jigntty because of our \vork ... T'lwy say tt-u-~.l \Ve llre pt:dple that L·un help others.. h~;!p. Before V\'e
\Vhen sun1eorh~ i~ sick, rhe cmnn1uuit.y leaders l'Onw to us for nobodies. So nm;.v we kd good; \VC fed honoured. -::u
11\.'en.::
In Uganda lhe lirst community-based home-care programmcos established by 'L-\Sll and Nsumbya were supplemented in the early 1990s by a revival of 11/lllll/0 nmkahbi (li·iend in need) groups among women in hc;avily infected an·as like Hakai. Tnlined by an Irish NGO. Concern, they offered both herbal medicine and basic care to families, espedally those with Aids patients, each of lh,, more than 400 caregivers being responsible f(Jr nne zone of a village. 'The driving !(m:es keeping these volunteers active arc tlw underiying companionship of other group members, meetings and ongoiug snpp<1ri from the village coordinator,' il was reportcd. 11 Nearby, in Masaka, Kitovu Hospital tmined community social workers wlHl operated in pairs in thei! home areas. visiting and caring i(n- Aids patients and orphans. They elcctt:d their own courdi!Jiltor and, if still active after J 8·· 24 months, received bicydes to increase their mobility." The most important home-care orgaui::;atitln in Tallzania. WAMAT1\ (from the Swahili for People; Struggling Agaimt Aicb in Tanzania), was fi.mndcd in i91:\9 in response to deaths among ihe clik in Dar cs Salaam, lmt with training ihm1 TASO and Chikanl,ata it !(1cused il;. ·:illgly on the poor and grew into an NCO of the hierarchical variely, wit!. six major urban branches and lifly smaller ones by the late 1990s. 53 Kenya was slcn'\lcr to develop hume-care programmes of ally kind, but !be Medicc1l Mio..sion Sisters initiated a remarkable scheme in the Korogocho !Rubbish) shanty town of Nairobi, where they worked in l 998 through some 68 trained volunteer health workers from the township's Christi<m comnHmities, who were supervised by profes;,ional nurses, served wi!lwut m<Jtcrial reward, helped to nurse lbe sick. and trained the children of Aids patients to care f(Jr their parents and Lcvcntually their siblings-"' Ethiopia was abo slow lo move in this Held. An Organisation for Social Services for Aids bcgall lu train home-care workers in 1 '192. bw a year later 90 per cent of respondents in pari of Addis Ababa staled that people with H!V should be
1 08 NGOs 1:7 the f,,ofutio!L of Carr cared l!Jr in lwspilal rather than at home, while a survey in 2000 found lhut reluctance to care for an infected relative at home was twice as lligh in the countryside as in lowns. Little had by then been achieved outside the capital. 55 In South Aii-ica the activists who helped to draft the NACOSA plan of l ')')4 m<,de home care their tlrst priority. When they were then excluded li·om policy Lisues, their cllergies turned instead to organising care programmes, a field in which central government was slow to act. By 2003-4, South Africa haJ 8')2 recorded 'Home and community based care programmes ,.. with over 50,000 beneHciaries'. implying that most were very smalL'" One of the largest was the Masoyi Home Based Cure Project, which was modelled on FACT in Zimbabwe and wao; basc;d in a remote area of the northern province of Mpumalanga but by 2002 had stimulated the formation oJ· 28 similar proj,~cts scatlerd through Mpumalanga, Swaziland, J\'Iozambiqne, and Zur and six months training and enjoyed a certain elite status in local eyes. More typicaL in terms of scale, was Care Services, which was launched in lviamebdi, near Pretoria, by nurses who used a conlai.ner as an ol1lce, laugh! their caring skills to family members, treated all manner of sickness in addition to urv I Aids, and relied entirely on local and provincial t\mding. 57 Nearby, in Sebokeng, Grace Lengan<e, one of lhe founders of Vaal Aids Home Based Care. recalled the bleak situation the progrmn1ne had to gnnv frorn. \-Vhcn i1 t1r0t bt:gan in 1998, disclosure \V~l~ synonyrnous to a death sentence. PLAs ·were not only dstradscd by community members but also ran the risk of beiug rejected by their own families .. An additional ~tignla \vas attached to con1n1uniLy rnc1nbers \'vho \li/Cl't:: iJt~ulvcd in HlV/1\ids care and prevention. Ms Lengane remembers rhat several people in the community immediately thought thai the whole staff of lhe tledgling V,wl Aid,; Home-based Care must all be inJected. Otherwise, why would they care so much?"
The largest home-care organisation in southern Africa was in Namibia, where Catholic Aids Action, a countrywide organisation founded in l ':l98, !Jad in 2002 some 39 sta!T and over 1.000 volunteers with 84 hours of training, organised into local groups with a formal status within the church. Hundreds more were waiting for training. Us model had been the Ndola Catholic Diocese programme. 59 West Africa was remarkably slow to organise support i(!r home carers, even taking into account that the epidemic spread more slowly there and prevalence was generally lower. Anglophone countries concerned l.bemsclvcs llrst, but to little lasting effect By 1 994 several Ghanaian institutions provided hospital-based home care, but lhe dil!iculty and cost of transport appear to have frustrated ibis, for Ghana's Aids plan for 2001--5 admitted !hal 'The provision of an effective and integrated continuum of care for PL\VHA [people living with HIV/Aids] in heallh institutions and al home has not n~ceived adequate attention.' ln Nigeria, too, initiatives to stimulate cornmunily-based home care during the J <J<JOs achieved Httlc. In Otnkpo an energetic community programme launched with British funding in 19')9 revealed the dangers of external mtervcntion when a television documentary tbe
NGOs 6 tile Evolution ,l( Care 109
area as the epicentre of the national epidemic, leading local residents to corn-
plain that 'unworthy' people were being privileged, to ostradse those infected,
and to close down the progranune. 60 Of countries, Ciit.e d'lvoirc beg;m tn in a few home"-care visitors during the mid l <J90s and Burkina slightly Ia let, but Aids plans prepared in 200l "--2 showed little interest in the subject and was only an international conference on community care of people with HlV;Aids in Dakar in December 2003 that alerted govcrnmentc; to their lktckwan1ness in this tielcl. 'Community care is the weak link in Senegal's policy to Cimnter Aids,' Professor Salif Sow observed at that time. 'Called continuum of care, this therapeutic approach has alceady proved itself in certain countries, above all in the anglophone world. Tts results are considered positive.'"' ,\lust palients and carers seem to have preferred horne care during the lasl stages of disease, although a proportion of observers and caregivers disagreed, ~spcdally as the epidemic gre1.v more burdensome. At home ihe patient was prot,;cted from bospiial infections and abuses, need nol fear abandoumcnt, could expect at least basic attention, and could die among kin rather lhan in the loneliness of a hospital ward. The caregiver, who would otherwise have to accompany the patient to hospital, avoided that cool, was spared the expense of transporting the patient's body home for burial, and could continue will! domestic and agricultural work. This last advantage was especially important to lite women who provided !he vast majority of can,, which was almost universally seen as a female duty wHbin the customary sexual division of labour ~ in Lesotho 'iNonwn actively dis,:ouraged men ihm1 interfering alilwugh as the epidemic proceded there were indications of greater involvement by men. _1\fost patients were young adults and their most common caretaker was their mother, alihough wives and female relatives of all kinds might be involved In the mid 19<JOs an estimated 21 per cent of all :Zambian 1Nomeu \Vere caring for someone will! HlV;'i\ids." 3 Home care was indeed a euphemism 11Jr women's work. And H was terrible work: LJOking dfler her son ... \vas ... Jifikl!lt fnr Scrina since he is a tnan. It \VUS awl.ward c
Snch tasks were espcdully dif!kull where running water, paUiarive drugs. and otlwr facilities were lacking. Most caregivers had not been told their patknt's diagnosis. Even if they snspected il which observers thought was
oll,_:n the case - they could not protect themselves without revculing their ion to the patient."' To deny it was also necessary ill order to avoid the stigma and isolation that caring for an Aids patient attracted. Moreover, !Cw can:givers bad equiprnenl with which to protect themselves. 'fhere .is some ancnlotal evidence of carers contracting the disease am! more of them fearing to do so. 'Last night I woke up screaming,' one said, 'I lit the lamp and jumped
] l 0 NGOs L'Y the Evolution of Care out of bed, l shook my clutbes and rubbed my legs. l had been dreaming that my legs were covered with sores. After thal l could not sleep. This dream has been occurring for the lasl two months every night, bu! some nights the sores are either in my mouth or on my face.' 66 Caregivers who were themselves already inlected had the added distress of watching a fate that awaited them. In practical terms, too, Aids patients could be hypersensitive and dilllcull. A Ugandar1 woman who had nursed two dying daughters became partially paralysed Vl.-henevcr she heard a Land Hover thal might be bringing home her only surviving chilLP 7 One study of caregivers found that about half spent up to three hours a day in patient care. a demand !hat grew as the disease progressed. 68 For the puticnts the limitations of home care \\'ere even more painful. One gruup of people with !HV /Aids in !Vlalawi described it as a dumping ground for those the hospitals wanted tn be rid of. Others labelled il home neglect or managed death. A careful study of 3 3 home-care schemes in Zimba' in the mid 1990s J(mml tbat almost not meet even half of the mHJinmm criteria. 69 Not only did many caregivers have little idea how to care for their patients, but they were often loo poor to provide the medicines, painkillers, and especially foud that were needed. During a severe !(lOd scarcity in 2002, several patients in Zambia were reported to be refusing discharge from hospital for fear of dying from hunger at home 70 The notion of a continuum of care from home to hospital seldom operated in prac!ice because medical and welfare services lacked resources. One survey in Zimbabwe in the late 1990s fmmd that only 2 per cent of the needed home visits were made. Even in Botswana, wilh a relatively well-fimdcd welfare system, 58 per cent of homecared patients studied in the mid 1990s were nol visited by health workers. In South Africa. where the ANC government gave high priority to welfare grants, fewer than ! 6 per cent of Aids-affected households surveyed in the early 2000s received a grant, although ail were entitled to one and over one-quarter benetited from an old age pension. Some observers believed that lhe most effective wuy lo improve Aids care would be to subsidise the farnilies who were stili available and willing to provide it. For others, lhe major problem was that medicu! welfare or community support simply did not reach most households at all, not leasl because the numbers needing i1 were thought at the end of !be century to be at least live times faster than the support networks. In Zimbabwe. of the most effective organisations, reckoned in 199'1 that support sen1ices reached fewer than 1 per cent of those needing them within iis area of opera lion. A national survey of Zambia at the same period found that only 26 per cent of carers received support from any agency. The equivalent proportion in Botswana in 2002 was thought to be 57 per cent. In 2004, lJNAIDS estimated that about 12 per cent of the people in sub-Saharan Africa needing assisted home care were teceiving il. lTNAIDS policy was that home care should be integrated 1vHh state health systems. Some feared thai this might suffocate the community initiative on which the whole movement relied, but the most eliective governments, as in Senegal and Botswana, began to move in this direction. Uganda lo link
Nl;Os b Uw Evulw.ion of Care l l I home care lo its decentrulised local goverument structure. ln Soulh Alhcu the central government was slow to intervene in this field and the lead was taken by the provincial authorities in K waZulu- Natal, who began to construct a network of paid carers linked to hospitals. Between 2001-2 and 20(N-5. however, the cenlrctl government's budget for home care mse from 25.5 million to 138 million rand, with the aim of eventually creating 2,4-00 home-care teams of paid volunteers. Pec·haps tbe most glaring weakness of horne Core was its inability lo relieve the acute pain that many terminal 1\ids patients ~ulfered. In a study of terminal patients in home-care programmes around Kampala in 2000, 58 per cent declared pain and other symptoms to be their main concern 74 Home carc,-s lacked the necessary So, frequently, did formal health institutions: in ! 9':17 only nvo fifths of uuiversily leaching hospitals surveyed had strong painkillers 7 ' The main need was for morphine, rurely available m Africa but suitable for administration by trained caregivers. Jn many ca:;es, however, proper terminal care required specialised institutions. since most ordiiwry hospitals refused to provide iL South Ali-ica already had a number of hospices t()r the geuercJlly founded f(lr white cancer patients. During the 1 990s most came instead to adnlit chiet1y 1\ilt> patients, Manv were so overwhelmed by the need that they also began to organise home--ca~e svstems. By 2U02 sume 57 institutions belonged to the Hospice Palliative Care Association of South c\frica. 7(, Several other institutions in southern Africa offered murc care or in some cases little more than places to die. mostly !\-om charitable motives bnt occasionally as prollt-making enterprises." !lospices were rare in twpical Africa. One pioneer was Hospice Uganda, opened in 1993 as lhe nucleus of an onlpatienl sclwme on condition that morphine should be made available to !be terminally ill. ln the early 1000s Uganda became i.be llrst African country to make palliative terminal care part of Us naiional health plau, introduce specialist training in the lleld, and provide morphine ll·ee of charge, a slep that other cow1lries in eastern Al\-ica began to follow?"
neath L7 Uw lfousehold l 13
11 [Jeath
f:x the Household
I-1
-IV;.'".'\ids ..was. n.ot .one epide.mic. but fc.,.·ur: .lirst.· the virus, th.e.·n _elise a. se, next dcarh, and tlnal!y decompclS!twn, e<Jch supenmposed upon its predecessors. The timing of each epidemic varied with distance from the westc.:rn equatorial epicentre ancl from the initial focus of infection in each region, but the sequence was the same everywhere. The process highlighted two distinctive features ol" heterosexual !IIV/Aids as an epidemic disease. One was il.s slow incubation, which meant that individual deaths were spread <Jcross many yccars rather th<.m conceutraled in a brief period of mass mortality. During the influenza epidemic of 19] 8 in the South African town of Kimberley, so a missionary recalled, 'No cofllns could be provided, as there was no one to make them; tbe dead were wrapped in blankets and piled one upon the others and taken in carts to the cemetery. Tbirtu at a time I have buried in a long grave, and we buried many three deep.~' During the Aids epidemic burials were equally common but for the most part individualised, with much of the ceremony that Africans had long devoted to them. This compounded another consequence nf the virus's slow incubation: HIV/Aids was an impoverishing disease, disabling advanced cases from working while imposing heavy costs for 1nonths of medical care and the eventual funeral. Here the second distinctive feature of 1he African epidemic was crucial. Heterosexual Aids was a family disease whose impact feU llrsl and most heavily upon the household, with young adults as the chief victims. The result was a proliferation of orphaned children and elderly grandparent' caring for them. The vulnerability of these new, misshapen households becarne dear dunng the famine that struck much of southern A!hca in 2002, a ·new variant famine' that might herald a phase of societal decomposition. Yet here, too, the slow action of the virus shaped the epidemic, fur by 2005 !here was no evidence of the social disorder thai had sometimes accompanied more explosive epidemics in the past. Nor was there necessarily reason to expect iL Recognition that deaths were occurring on an unprecedented scale spread slowly behind the virus, between five and ten years after the epidemic struck each locality. t\ journalbt reckoned that Kinshasa's people began to realise the 11.2
scale of the crisis in 1986, at much the same time as Aids deaths became cmnmon in southern !_lganda, Kagera, and Abidjll,' an anthropologist. was told in Caborone 7 In southern Mal«wi or the Nyanza province of Kenya in the early 2000s il was normal for an
114 Dmtl! & the Hausdwld
from, but we as!, yon to take your fatal diarrhoc•a with you into the grm·e. Do not return lo infect others. Go away! Never again relum to the villagc.'i" fn Kenya, where some Protestant churches initially refused 1o hury people dying of Aids, Charl.cs Nzioka reported that 'those who die of AIDS or related illnesses are assumed not to have the chance of life afier-death'. Their llmerals, he claimed, '"ere often ill--ilnanced, ill-attended, and conducted at inconvenient midweek times far from their homes. In 199:1, 26 per cent of Kenyans questioned believed that Aids could be contracted by touching an infected corpse. A visibly emaciated corpse was commonly concealed from cdl but the closest relatives and li."icnds. 11 The frequency of funerals compdled other innm'aliuns. Riles olren became less elaborate and time-consuming. The range of !hose expected to attend might narww. Instead of the initial burial being followed after a long interval by an elaborate 'second funeral', the ceremonies were frequently rnerged. The custonwry feasting became less elaborate aml expensive for both rehJtives and guests. A goat rather than a bull slaughtered. Children might begin lo attend what were now familiar The long mourning period, which had often required all members of the community lo abandon agriculture !'elf severai days, was radically shortened or observed by (Jnly the closest relalh'es. Some communities formally enacted these innovations-' 2 Occasionally, perhaps where the epidemic was still recem, ibe innovations applied only to Aids dearhs, but generally they seem lo have cxkuded lo other fmh?rals. Deaths could be occasions for conllicL ill one funeral m Lusaka in 1 991 lhc dead woman's father insisted that she had not died uf Aids, bul her brother, a staunch Adventist, announced that she had 'bewitched herself because she lived a shameful life. '"What worries me most is that she has missed heaven," be said before his father stormed out of the bouse and shouted at him. "Go back to your parents!"' 13 By contrast, twelve years later a family of activists in Sowcto 'told the world' the cause of their daughter's death: 'Dladla's mother said ... that far ll·om being ashamed that her home would now become a landmark, she was glad that her daughter's last wish bad been fulfillcd.'H In some this 'preoccupmion with terminal illness and death' bred a deep pessimism. Jn others it bred defiance. Devotees of sape, the Congolfse cult. of elegant dress, invented a dance to celebrate the death of a rrue sapeur. Young people in Nyanza, so their elders complained, danced all the more wildly at the now so ti·equem funerals. Most, perhaps, concentrated on obst:rving the proprieties, on ensuring especially that no one in their family joined the growing numbers subjeded to the indignity of a pauper funeraL Terrible as it was, Aids was only one African preoccupation. Southern Africans cummunly ranked it below unemployment and crime." Like the burden of care, the weight of death fdl principally upon the household. ln 1996 Gabriel Rugnlcma studied !he process in a heavily infected Kagera village, sLressing thai rhe slow action of the Aids virus gradnally fragmented households, through the lllness and cleatb of young adults, impoverishing them by depriving them of labo11r and J(lrcing them !0 dispose of assets in order to meet the costs of health care and funerals. R<1ther than 'coping' with the crisis by a Fariely of expedients, as previous studies had
Death & the lluuselw/,1 I 15 claitn,;(l, Huga!cma insisted th1il many households fallcd tu cope and were etlL l"wperised beyond recovery or completely destroyed. In their place enwt gee! new kinds of households in which elderly people and orphaned children struggled to survive while ilnposing burdens on hitherto unaffected relari,·eo,. lly 1996, 32 per cent of household~ in the village had lost a member and anuther 2') per cent had incurred a mCJjor obligation.'" Elsewhere the impad was often less dramatic because infection rai~s were lower manv young people who died were not hou~ehold heads, and lasting imp(,Jvcrisl;menl a!Icctt~d ''hidly households that were already poor. u ln Rugalcma's village !he average. period lhnn sickness to dc:alh was about eigh1ccn months, some twelve of which were spent in bed. A sic-k man tried, successively, herbs and scll~mcdication, the nearest clinic, lhe government hospital and a mission hospital, o!len incurriog heavy tnmspori costs. Sick me•J continued to seek treatmem until rhe last days of their lives. They decided whether to dispose of assets lo cover the costs, selling cattle if available bn! seldom if ever land, although an,J!her study in ihe area fonnd cases. Tbe total cost uf l:reatnJent might equal a year's househoid income. Meanwhile: a wife cariug tix husband would spend 45-6() per L:ent less lime than normal on agriculture, allotting lades where possible lo c!Jildren, especially girls who might be removed Ji·mn school for lhe pnrposc. Less was spcnl on a sick wife, who seldom rccdved hospital care. 1 ' Exact comparisons are dillicul[, hut studies dscwhere suggested hcahh expenditures as proportions of household income bot!( higher (in Chad and and lowc:r than in Kagera, the latter especially in Sonth Africa where some medical treatment was Ji·ee and lwus,:IJO!ds caring f(Jr a member with Aids spent on average one-third of their income on health care in 2002.' 0 'l'u the expense or medical care was added the ,:osl of death. Hugalema tlwngh! that funeral cost a Kagera household substaulially less thiln medical lre<Jtment partly because il received conrributions from rdali\'es aud neighbotH"S, helping to impoverish the whok comnHmily. Another study. in the area, howevcc, recorded average funeral expenditure nearly 5U per cent higher than medical custs. 10 There was evidence elsewhere on both sides but agreement that the two expeudirures together could cripple poor households and I !Ja l most of the help they received came li:om conununity contrHmlions to limera! expenses. ln South Africa, Zimbalnve, and Botswana, a minority of huusehu!d Aonged to comributory burial sodelif~s. Under the financial pressure uf the epidemic these seized any opportunity to reject a contributor's claims, but they nevertheless enabled many households to provide respectable fuueu1k 11 ln I\.agera and western Uganda women established informal mutual assistance groups f(Jr this purpose, 1-v bile mosl Ethiopians belonged to tradi-tional iddir llllrial societies there were said to be about 2,500 in Addis Ababa alone-- whose finances came umkr severe pressure during the cpidemic. 22 Hrmsclwlds burdenecl with medical and funer"l c:xpenses might snll'er further from I he loss of labour and income resulting from lhe death of a young adult, but lhe impact varied with household circumstunces. ln Kagcra, for example, per capita hJod consumption in the poorest 50 per cent of house!1ulds fell by 1 5 per cent after such a death, whereas in tlte richest SO per cent of
I ] 6 Death b the Household
houscho!Js it rose by lll per cent. The ric!Jl'r households abo received far more assistance and credit, for no one wanted to lend to !he poor, allhough they might obtain the ill-paid employment that ofwn took the place of mutual aid 23 Most affected hm.tseholds in Kagera recovered fairly qnidJy !hm1 an Aids death, but a proportion · probably the poorest - did not. Tn 20 of the 164 households in Eugalema's village the death of an adult member led one or more other members (young or elderly) to move to another hou:;ehold, while six households dispersed and disappeared completely, which probably happened more often than later researchers could disccrn. 21 Research elsewhere often showed less dranEltic consequences of deat!J, but it agreed tbar the impact was most severe on households whose male head had died. This reduced household income by more than 80 per cent in more than twiHhirds of a group of affected househo!Cls>,studied in Zambia. If the moiher died, the household was more likely to disintegrate, as did 65 per cent of such house· holds studied in Zimbabwe. 25 As this evidence suggests, the impoverishing eiTects of Aids commonly fdl especially heavily on widows and their children. Despite TASO's prompting, in 2001 only 6 per cent of its clients made wills 2 " Instead, the fate of property and survivors was generally left l(Jr the family to decide in accordanc·e with current custom. The husband's kinsmen might blame lhe widow for his death and seek to appropriate his property and children. Noerine Kaleeba lost her marital home in that way, while a spokesman l(Jr people with HIV/Aids in Senegal complained in 2004 that chiidren contracting the disease from their parents were usually barred from inheritance. Alternatively, the husband's family might press the widow to remarry one of their number, but widows potentially infected with HfV were not always in great demand. instead, a young widow might be left on the land, often in poverty. to manage i! for her children t.o inherit. In Rngalema's village none of the 3 7 widows remarried. A Zambian study in the !ale 1990s found that 16 per cent of households were beaded by widows and 2 per cent by widowers, who f"mHl it easier lo remarry. In 2002 almost three-quarters of i\.iJs-all'ected households in South i\[dca were female··l1Cadcd. 28 ln 2004 sub-Saharan Africa had an estimated 2 million Aids orph<:ms, de!ined by UNAlDS as children under l 5 who had lost at least one pan.:nt to the disease. They were about 95 per cent of all the world's Aids orphans. because HIV prevalence was highest in Africa and late twentieth-century African families were exceptionally large. 29 The slow incubation of IJIV was again crucial here, for it gave parents time lo produce children before Aids intervened. The orphan problem first attracted attention in 198'! in Uganda, where a survey in Rakai district .!iJtmd that 25,364 children under eighteen· 13 per cent of all such children-·· had lust at least one parent, not necessarily to !\ids. ln the early 2000s Uganda slil! had the largest number of Aids orphans in the world, although H!V was no longer exceplionally prevdlent lhere, becaust: some twenty years separated the peak incidence of HlV from the maximum prevalence of orphanhuod 30 A small number of children- about 3,000 a year in South ,\i.u ·"- were simply abandoned. ll More of those from elementary farnilies who lost both
Deal/1 {';the Household 1
pareuts during the epidemic lived by themselves child-headed households, wi!b or without the assistance of adult relatives or neighbours, often ill thdr parental home or in a house where <J grandparent had cared I(Jr them nn!ll death. Some had themselves cared for dying parents or grandpurenb. 'When AIDS takes a parent,' it was sahl, 'it usually takes u childhood as wdl.'l 2 Child headecl households were first noted in l989 in Hakai, where oue houselwld had 'heard rumours that the government's solntion to the AIDS problem requires extermination of all the victims' children' 31 The numbers of these households were oficn c:xaggerated, but in 2000 Hakai district was said lo have more than 2,000. a number roughly p
Urban children who lost both parents faced special dilficulties, for they might lack kinsl(Jlk in the town and have no claim to urban accommodation. UNICEF estimated in 1996 lhal about 40 per cent of Zambia's street children had lost both parents, but lhis was a subject with few hard data and much exaggeration. 17 il:losl people qnestinned in South Africa during the J 990s tbought that the government should care fur orphans, ls but elsewhere it was generally regarded as a family responsibility and one that most families accepted with remarkable generosity. It was a traditional obligation -care workers observed that no Zambian language bad a word for orphan that would inclmk children living with adult relalives' 9 - but the scale ilf the burden imposed by the epidemic wa~' novel, as also was the idcelity of tbe relatives who bm·,, it. The 199/J Malawi census showed that 95 per cent uf mc:temal orphans, 97 per cent of palemal orphans, and 94 per cent of thuse who had loot both parent,; were living vvith relatives. A slightly later survey !(JwJd that 2 5 per cent of Ugandan househ_ulds contained an oq)han, a proportiral probably rivalled or
exceeded in Zimbabwe and Zambia.'10 A study of orphans' caregivers in Nyanza kHmd that 59 per cent had accepted the obligation as antomatlc next
118 Dealil b the llouselwld of kin and 29 per cent had volunteered themselves; liJr a family noi to synthesis of 40 country a caregiver was considered shameful everywhereY surveys during 1997--2002 showed that three-quarters of paternal orphans were living wilh their mothers and slightly over half uf maternal orphans vcere living with tbeir fathers. VVhen both parents died, however, the burden of caring for double orphans passed increasingly to grandparents who had not in the past generally undertaken this taskY Otten the grandmother first cared for her sick and widowed daughter and her children, then took charge of I he children when the daughter died. As the epidemic grew, so did the proportion of orphan caregivers who were grandparents. fn eastern Zimbabwe the proportion increased between 1992 and 1995 from H, to 44 per cent. Namibia in 1992, 44 per cent of orphans not living with a surviving parent with grandparents; in .WOO the figure was 6! per cent. In 2002 a grandparent was the primary cangiver for 20 per cent of all South /\Jrican children aged between two and fourteen. 'l do not see how I could not care for them since l am their grandmother.' a L:imbabwean woman explained. 43 The grandmother's burden, as Aids bas been called, could be overwhelrning: Life is very dillicu!t because I have a pension of 500 Rand per mumh. With that I have to support my two daughters Nomh!ahla and Samb.eliswe who C~re ill, my other two chHdrcn \vhu are uncn1ploycd and sevcu \.vho I take care of.. .. At my age of 5'l it is hurd to be a mother once again to all these children. but I try to give them all the love that I havcH
In most countries for which data exist. a majority of I be honscholds sheltering orphaus were headed by women, with lhe highest proportion (approximately 72 per cent) in South Africa, where it was somdimes thoughl mistakenly that the extended family had been unusually wcukened, whereas in realitv it had often become female-linked. It 1vas striking, too, that the houselJOlds most willing to accept orphans were commonly those already with numerous dependents and those that had themselves suffered an Aids death. In several tropical countries the more prosperous households accepted orphans most readily, but in South Africa the opposite was the case. 45 Caregivers often found orphans dillicult to manage. Snm(; vvere anxious, depressed, moody, and occasionally suicidal. 'Ifs my fault because l don't have parents,' one said. ·r was not supposed 1to be born,' said another. Some were angry, the main feeling expressed in a book that TASO kept fnr ·lJildren's thoughts. 46 The anger might be directed at parents who had ruined LlH.~ir lives: Thabang faced a lot of complications a!lcr my disclosure. After his lather dkd, I told his teacher Twas HlV positive. All the teachers ill the sehoul said, 'Don't touch this child, his mother has !liDS.' After that. Thabung said tu me, "Don't iouch me, rnornrny, you're going to glve rne HIV.' Thabang never ·.vani<.::J l.o g() to sehoul again so he actually stayed back a year:17
Most painful of all was probably the mercilc,_;s teasing from other children, who widely assumed that children orphaned by Aids must automatically be felt unwanted. 'I infected, a view oflen shared by caregivers. Many
Death E., the llouselwld 1] 9 WilS taken lO lhe relatives, and l used to be mistreated.' a child "Whenever r made a mistake I was beaten, told all sorts of insults and always told l
!20 Dearll Er the llouseilold Africa. which had a number of small orphanages caring for children, only one orphan in 400 wa' thought to be in an institution in 2000. Rwanda and Zimbabwe initially relied more heavily on orvhanages but hmnd the expense unsustainable." As an activist pointed out, African communities were quicker to org::> million 1\ids orphans; in Swaziland orphaned children would then make up more than 1n per cent of the en lire population. :\Iany would lack grandparents as well as parents. 60 . Disease and death within the household impacted on agncultural systems already stressed by rapid population growth on limited good land, unfavourable rainfall, falling prices, mistaken agricullural '·gws, and the economic crisis that began in the late 1970s. Perhaps the besl of many uncertain estimates is thm bct·;veen 1960 lind the mid 1980s !(JOd production per head in sub-Saharan Africa fdl by about 1 per cent per year. Between J9b3 anJ 1990 the proportion of Ugandans hdding less than one hectare ol land tripled. 61 Kagent, Nyanza, and suuthern Malawi 1Nere only the nHls1 obvious areas where: population growth, land scarcity, and agricultural decay preceded high HIV prevalence. The epidemic's impa.ct on ,agricultural systems was chiefly to intensify existing adverse trends. lts first effect, m areas of h1gh BIV prevalence, was to reduce household labour, either through carmg dulles (l
-
Dculh 1.7 tile Ho!tselwld 1.21
exp,:n~ive -- in l\agera costs tripled during the 1980s'" - as disease interrupted snpplies. The res, 1Jt was o>malier cultivated areas and lower output. In Swaziland, !llr example, an Aids death in the: cady 20tl0s roughly l!alved the average area mhivatcd. Labuur :;carcity also obliged some poorer households to "''Tifice higher value· cash crops like cotton and collice in fmrour of domestic foud crops llke maize and casstt\'U. a 'ltlberisaiion' of agricul!ure tbai Hu1ritiun. Disposal of stock to mbc casb or supply funerals exacerbated this t1 c.nd. 1\lany young men wilh unci.Ttaiu life cx:pectancy abandoned the and long~term goab of limuing in pursuil of short-term eamiugs in towns or olber cmnmcrcial enterprises. Disease interrupted the transmission of rural skills. Not all households suffered. The~ more prosperous could survive ir single death and u >uu:essfnl minority might accumulate land and cattle at low prices lhJm poorer neighbours 6 ' But new categories of impoverished households - the 'Ai(L-poor' - came intu notably widows or gwmlparenls caring for mtmbcrs of orphans. Not uU regions were affeckd. T!J<~re was rather liltle evideuce ·1•;mge in the Ethiopian coumryside, where lflV prevalence was low, or in c.oulh where peasant producrion was unin,podanl. areas like Burkina could he badly a!Tected us illness and death among migrant workers reduced remiliarh:es and made it impossible to maintain the two households that migratiun demanded. The n1ost vulnerable areas \vere the savanna grain·-farrning n:gions vvith a single wet season inlo which lubour was concentrated, whether in West i\frica HIV \\a:; less prevalent there - Ol' especially in the drier parts of easkrn and southern .Africa where pn-:valence was so high. By contrast, areas such as Kagera and western l!gnuda, cnjo)'ing yeHr-round rainfall and permanent crops like bananas, might be less a!fccted aglicuilurally than their high disease prevalence snggested.''" This did not mean thai the high· prevalence regions west ot' Lake Victoria were spared. 'Drive through Rakai and Mas;tls.a, the wo£sl·hii districts along Lake Victuria,' it was reported in 1998, 'and the eiTects the pandemic are tlbvious: abandoned banana groves, overgrown liclds, empty, closed houses, fresh gran;s next to homes, and li.lneral processions.' There \\iere reports of siarvation in wcsleru Uganda in 199() <mel famine relief ·was tlCt:ded in the drier parts of tvlasuka and Rakai during 1999-''' Bnt tile majur famine related lo the Aids epidemic: took pluce in the dry-grain lauds of central and southern Africa during 2001 -3, centring in ~.1al<~wi, :Gambia, and Zimbd•we but extending also lmo Muzumbiqw~. Lesotho, Swaziland, and vulnerabilc parts of South Albea. Excessive rains early in 200 l reduced Ma!m\'i's maize harvest by 32 per cent. By ihe end of lhe yeGr NGOs reported growing distress, hut it was not until some hundreds iJ suulhen1 1\,\alawidns died c~arly in 2002 !hal the autlwrilies look action. Tlmmghout 200.; the scarcity spread more widely, exacerbated by another poor harvest, until over 15 million people needed aid. Between I ,0()0 and 3.000 Malawians mav have died, wHh unknown but much smaller number,, elsewhere, hel(m.o the" worsi of 11!" crisis passed during 20U:l, although aid was still needed in Zimbabwe and scattered areas elsewhere as late as 2005 6 " or dcaHL At the 'amc time hired labour became more
122 Death & the Household The deeper roots of the famine lay in the growing pressure on resources and the impoverishment of many rural areas over several decades. Between 1980 and 1999 average calorie intake in Zambia fell by 15 per cent. In 1998, a 'normal' year, 68 per cent of Malawians were short of food. To this was added the climatic instability that usually triggered famine in Africa, but it was mild compared with earlier experiences. Malawi's inadequate harvest of 2001 was more than twice that of 1991-2, yet the earlier scarcity had not caused famine deaths. One reason for the disaster in 2001-2 was that governments and donors ignored the early signs of approaching famine. Another was that during the intervening decade under pressure to liberalise, Malawi had dismantled its public anti-fami~easures without first ensuring that private enterprise could replace them, a policy compounded during 2001 by selling (apparently corruptly) the entire national grain reserve rather than some twothirds of it, as donors had recommended. At the same time the normal defence against famine in the region, Zimbabwe's surplus maize production, wa~ removed by its government's seizure of commercial farms. Finally, the Malawt government's intervention was less effective than in earlier scarciti~s. 67 Yet a closer analysis of the famine of 2001-3 shows that its novel and distinctive character was due to the Aids epidemic. In the phrase of Alex de Waal and Alan Whiteside, this was the first 'new variant famine' shaped by young adult deaths and the 'Aids-poor' households they had left behind. 68 The most careful study, in Zambia, showed that per capita consumption during the famine fell by 25 per cent in households without an adult aged 15-59 and by 28 per cent in households whose head was sick. Not all these disabilities were due to Aids - there was no medical testing - but most clearly were. Disadvantaged households were especially likely to grow non-nutritious root crops and to rely partly on wild foods. Other evidence suggests that one reason why the 2001-3 famine was worse than that of 1991-2 was that households no longer had assets to sell, partly owing to impoverishment by •)isease and death from Aids. Mutual aid also seems to have been abnormally slender in 2001-3, while relief was especially difficult to distribute to those bedridden or immobilised by caring duties. In other ways, too, Aids gave a new character to the famine. It happened in democracies, which current theory had thought impossible. It was exceptionally difficult to end, because Aids-poor households had little recuperative power. In 2002-3 poor Zambian households with a sick head planted 69 per cent less than in 2001-2 and doubtless often became permanently dependent. 69 'The ... most alarming factor that makes this crisis unique is its prophetic character,' a United Nations team reported. 'Rather than anticipate the conclusion of this crisis, the affected populations, governments, and the international community are concluding that this crisis marks the start of an unwelcome trend: health, education and other sectors are equally vulnerable to collapse under assault by mv I Aids.' 70 For several years economists had been trying to estimate the impact of the epidemic on African development, without reaching any consensus. Most estimates were quite low. The World Bank suggested in 1997 that a generalised epidemic (as in eastern and southern Afiica) reduced the growth of per capita GDP by about 0.5 per cent per year, which it thought manageable for
Death & the Household 123
all but the weakest economies. Roughly similar figures were often quoted for South Africa. In 2002 UNAIDS reckoned that the epidemic had reduced sub-Saharan Africa's economic growth by 2-4 per cent. 71 Some economists and nati~nal governments took gloomier views. Botswana, for example, reckoned m 2000 that HIV/Aids was reducing its growth rate by 1.5 per cent per year and would make its economy 31 per cent smaller in 202 5 than it would otherwise have been. 72 The main fears were the cost of health services, the ~eath of skilled workers, the potential deterrent to foreign investment, and tailme to transmit knowledge and socialisation to new generations. Attention also focused on the impact on companies, which was still relatively small. Of a thousand companies surveyed in South Africa in 2003, only 9 per cent had yet felt a serious impact. A conference on the subject arranged in Port Elizabeth in 2004 was cancelled for lack of interest. Some 77 per cent of East African businesses questioned at the same period did not know what the impact had been, while most Nigerian manufacturing firms did not regard HIV as a management concern.7 3 Among unskilled workers the chief cost resulted from absenteeism, either from sickness or to attend funerals. More damaging and expensive was the loss of skilled and managerial staff that multiplied training costs, pension payments, and other benefits. Consequently, HIV impacted most heavily on firms with high levels of skill. One study of slx enterprises in southern Africa, published in 2004, tound that the increase to wag~ and salary bills ranged from 0.4 to 5.9 per cent and was greatest for those providing the most extensive benefits to workers. Firms producing consumer goods foresaw shrinking markets. Large companies feared that HIV might threaten their global competitiveness. 74 South African mining companies, with 20-30 per cent of their huge labour forces infected during the early 2000s, reckoned that HIV added between $4 and $6 an ounce to the production costs of gold then selling on world markets at nearly $300 an ounce. 'The impact is not as huge as one would gain the first impression from reading a lot of the literature,' a spokesman for the Anglo American Corporation said in 2000. Many companies transferred costs to their workers by reducing medical scheme benefits and excluding new employees from them, shilling pension schemes to provident funds, outsourcing non-core activities, investing in more capital-intensive technology, am! imposing retrenchments and early retirements.7 5 Insurance companies were especially vulnerable. Malawi banned them from testing applicants, as a result of which the industry virtually disappeared, as also in Uganda. Kenyan companies refused to cover HIV-positive patients. Zimbabwe's firms quadrupled their premiums in two years. 76 South Africa's sophisticated and powerful companies were exceptionally quick to assess the new risks, insist on HIV testing, impose exclusions, and devise new and restricted policies open only to those in the early stages of the disease, but by 2000 some firms were suffering losses consequent on the epidemic.7 7 Pension funds faced similar difficulties. So did medical schemes; several in Kenya collapsed, South Africa's were legally obliged to cover HIV/Aids costs (except antiretroviral drugs) at the price of ever-higher contributions, and the Namibian government had ,,, inject taxpayers' money in order to keep its own scheme afloat_?s
124 Death & the Household The epidemic had an especially early and severe impact on professional groups. During the 1990s Barclays Bank of Zambia lost more than onequarter of its senior managers to Aids.7 9 The alleged deaths among teachers are sometimes difficult to credit - the Central African Republic is said to have lost over half its teachers dming the 1990s and to have closed 107 of its 173 schools - but more teachers died than were trained in several countries with high HIV prevalence. A survey in 2000 found that 20 per cent of South African health workers aged 18-35 were infected. 80 Doomsday predictions of the demographic consequences flourished early in the epidemic. By simply projectjug current growth rates of prevalence into the future, a Johannesburg physiban predicted in 1991 that by 2010 South Africa's population would be reduced by 75 per cent. 81 Some sophisticated early projections were also deeply pessimistic. The most influential. by Roy Anderson and others, predicted that the epidemic might convert sub-Saharan Africa's high population growth rates of 3 per cent per year into population decline 'over timescales of a few to many decades'. 82 During the early 1990s, by contrast, most demographers came to believe that continued high fertility would cushion Africa against the epidemic, but two developments undermined this confidence. One was that prevalence rates mounted to unexpected levels in many countries. The other was that birthrates in several of the more developed African countries fell dramatically for reasons unconnected with the epidemic and due more to the availability of artificial contraception, lack of economic opportunity, and desire to give children the best possible education. Whereas Uganda's total fertility rate at the end of the century remained at a high 6.9 births per woman, Zimbabwe's had fallen to 4.4, Botswana's to 4.1. and South Africa's to 2.9. 83 Since these countries also had amongst the highest levels of HIV, by the late 1990s demographic opinion was swinging back towards the pessimistic view propounded by the United States Bureau of the Census, which predicted that the populations of all three countries would decline during the early years of the new century. In 2005 a United Nations report added Lesotho and Swaziland to the list, while removing South Africa. 84 In the meantime, pressure for family planning, which had peaked in 1984 when African governments collectively accepted its necessity, faded before 'the painful "family planning" by Aids'. 85 The pessimistic view of Africa's demographic future current at the beginning of the new millennium was matched by pessimistic predictions of the epidemic's social and political consequences. 'What kind of shrivelled wasteland will my nation become?' a young doctor asked from Zimbabwe. 'Young orphans and the old ekeing out a crabbed, hand to mouth existence in dusty forgotten rural homes, while in the towns, industry falls silent, businesses and stores lie closed and derelict while the wind blows rubbish and old leaves down deserted, dead streets.' An extravagant prophet warned that by 2010 'South African society could be living out the values of a movie gangland dystopia such as Mad Max.' 86 The prophets pointed out that because Aids chiefly killed people aged between 25 and 45, countries with adult HIV prevalence of 2 5 per cent or more would become polarised between the old and the young, with more people over 60 than in their 40s and 50s, and with
Death [7 the House/wid 12 5 perhaps a quarter of South Africa's entire population aged between 15 and ~4. 87 M~ny of these young people would have grown up as orphans, unsocialIsed, alienated, and potentially 'sliding into lawlessness and anarchy' _ although there was no evidence for this. With few years of adult life ahead of them, the young might neglect education in favour of opportunistic behaviour and instan~ gratification. They might breed hurriedly, reducing the status of "':omen. Skills would not be transmitted. The state might well lose control of vwlence, not least because half its soldiers and (in South Africa) perhaps 35 per cent of Its policemen might themselves be infected. Institutions would be weakened, property rights disrupted, and democracy threatened. Wide social divisions might open between high-risk people dying young and low-risk people survivin.g to normal ages, between the skilled and protected and the unskilled and dispensable, between Africans and the rest of the world. Medical and welf~re services for the old and weak might atrophy. Many, it was suggested, might flock to millenarian promises or retreat to millenarian dreams ss Africa was threatened by 'social involution of a scale probably unprecedent~d in human history'.89 These predictions, like long-term demographic projections, took no account of the positive developments taking place within the epidemic during the 1990s and early 2000s: ~he demonstration, especially in Uganda, that ordinary people co~ld cha.nge their behaviour to minimise the risk of HIV; the discovery of a~ti.retroviral drugs that could suppress viral infection; a greater international wi!hngn~ss to fun~ measures against the epidemic; and the emergence of people With HIVI Aids as political actors more apt to re-engage society with the state than to retreat into anomie. These positive developments will dominate the remainder of this book.
The Epidemic Matures 12 7
12 The Epidernic IVIatures
-~o
urina the 1990s the character changed in most African regi<~ns that u had .. fir.st infected. HlV prevalence grew mo.re sl.ov\.'lY.. stabilised, or began to Jecline, either because deaths over,tot::' the ·!!1ClOCnC ·' e U.. [ ne"' ·nl'···c··t 1"0· 11 s or more controv.ersiallv. because H.J.CidLlH<. c~lso. 1 " ~ ' . . !. d l ·" d·' ·lined Preveulive measures claimed their [irsl successes,. provo ong e Jdte cc \ ,lli~h measures were cll"eclive and how they migbt be rephcaled dse~\~Je;e Instead of spreading rapidly among peopie with higil-nsK behavwur, tJ-c v~:us increasingly attacked vulnerable members uf the general populati~n, e~pechlly ooor women. Jn short. the epidemic matured. It rcmamed WI e'~re·Hl aml fataL but without the explosive quality of ib . . ahhough With ;he ~qually alarming prospect of permanence. This._ however, was L~ue,on? ;n areas of early infection. Even in the mid 2000s there were st1ll r,drb ~, t1~ hitherto isolated by distance, disorder. or some other_ ob,stacle, C() ,.1t·1110111
j
·ir'
' ~- ' ·· · 1\.l l · · 1 f )()(14 ··n where IHV was spreading with epitkmic vigour. , lie em q estimated 2 5.4 million in sub-Saharan Africa had HlV. ;one m1 1on more than two years earlier. 1 • The first half of the 1990s was lhe worst pcnud in the . early · 1 · . ·\[·'-· "', ··t its Prevenllve measures historv. Expansion m sout 1ern [ lll.. a wds " . .· . . ,... ,· , . seem;d to make no impact on behaviour. There was no progresc; with ~ ac~m-~s or '·un!ive drugs. Many national programmes were cmrupt or u~eff~clt.l; el. ' 't. ,,l ·1·ntc'"t'"'l W"S l<wv and aid was declining. The WHO s. l~ ooa I.n l erna !Ollu ' ,, " · J ·u f Programme. attacked from within and without: was wo~md up al L w en 199 5, leaving many national programmes berelt ot funds. . .5 '" , News from lJgauda restored hope. ln retrospect .. ep1dem~o~og1,t~ c~ame to l.,li,,vc tlFt the incidence o! new mfectwns m southern llg.tbd,! h<~ i;~ ;he lat:r 1980s and then !~tHen rapidly.' The tirst indication that HI\~ rhcre was declining cwne from the antenatal cb . Dt Mnl
°
126
in "uuthcrn towns steeply and continuously, from 29 per cent in Kampala in 1992 to 8 per cent in 2002:1 Dedine was slower in the suuthern countryside and was temporarily reversed during !he later 1990s in warridden Gnlu district in the north, while expansion continued into the 2000s in smne outlying areas. Overall, however, UNAJDS reckoned thill TJganda's udult HlV prevalence fell from 13 per cent in the early 1990s to 4.1 per cent al the end of 2003s Across the border in the Kagera region of Tanzania, too, urban prevalence nearly halved and rural prevalence fell by roughly one-third between 1987 and !996.'' The flrsl reports of dcdine met scepticism. Some suggested lhat the au!e·· nawl ligures were unreliable: that less rigorous testing was allowiug positive cases l.ll go mmotkcd, that more rigorous testing was those falsely tested posilive in the past., or that the epidemic was increasing the number of HJV-positive women whose low fertility artlllcidlly reduced antenatal prevalen,,; Later sample surveys of entire that aulcnatal statistics uli.en somewhat exaggerated overall IllV pre\•alence, so that many onicial estimates were reduced in .200 3, making long-tl"rm cornpari sons difficuh, but as Uganda's antenatal relums showed evt~r lower prcvalunce during the 19'i0s it became clear thal more than statistical distortion was involved. Some observers suggested political distortion, whether by lhe (~ontrol authorities, for whom evidence or declining prevalence became an argument f(Jr desperately needed funding. or by the nalnrnl teudeucy to exaggerate good news. 'They don't believe that any country in Africa can do anything positive,' Uganda's Minister of Health cumplainecF iVlore serious doubts suggested that declining prevalence might nnt indicate succ:ess against the virus but arise from its own dynamics. As the epidemic matured, it was suggested, high-risk sections of the population might be saturated, infection less quickly transferred, individuals become less inJectious, and perhaps the virus itself lose some of its initial virulence-" Most important, dcc·lining prevalence might simply mean that more people were dying of Aids, raiLer th<m any reduction in the incidence of new inJections. This was argued especially by Ugandan and American researchers in Rakai who had since l9S8 conducted one of lhe three long-term projects in the region, the others being a joint Britit,h and Ugandan programme in Masaka and a Tanzanian and Swedish project in Kagera. The Rakai leam pointed out that although prevalence had declined there during the early l '!90s, the incidence of new inlectiuns had not. Instead, 'excess mortality among HlV-posiLive persons could almost entirely explain the uecline in !!TV prevalcnce'. 9 The objection to this pessimistic conclusion was that the rnosl dramatic reductions in HTV prevalence had taken place among people aged 15~ l who rarely died of Aids. At Nsambya Hospital's antenatal clinic in Kampala, !(Jr prevaleuce among women of that age fell between l99J and 1996 Jhm1 28 io 10 per cent. Other institutions recorde
128 111e Epidemic Matures were published fully in 2002, covering a ten-year period that the researchers considered necessary in order to reveal change. They showed that the incidence of new infections among adults aged over 13 fell between 1990-4 and 1995-9 by 37 per cent. The fall 0ccurred in all age groups, although the total number of new infections concerned was only 190. 'The most likely explanation for the falling incidence and prevalence,' the project's director wrote, 'is risk-lowering sexual behaviour change in response to the severe HIV epidemic itself or to health education messages from government and non-government sources anqlln the media.' 11 As encouraging evidence from antenatal clinics and the Masaka project accumulated, argument about its explanation sharpened. The Ugandan authorities naturally claimed the credit. The decline of infection especially among the young and educated implied a particular role for the HIV instruction compulsory in schools since 1987. Several studies supported this, one finding that each additional year of schooling reduced the risk of HIV infection by 6. 7 per centY Museveni and other leaders had spoken relentlessly about HIVI Aids on all occasions, the press had been remarkably frank, while the decentralised local government system and the mass of NGOs and religious bodies had contributed to high levels of communication, often backed by threats and coercion.U Uganda's success became a matter of national pride and attracted delegations from many parts of the world. 'In Uganda,' a journalist from equally proud Senegal wrote in 2004, 'the retort to Aids concerns'everyone. It has become a matter of patriotism that demands a general commitment and mobilisation.' 14 How this general awareness had translated into behavioural change was more contentious. Some analysts pointed to a reduction in cfsual sex, especially but not only among the young, for whom there was something of a return to earlier and more restrained sexual behaviour. According to personal accounts given to behavioural surveys, the average age of sexual debut in Uganda rose between 1989 and 2001 from 14 to 16. The proportion of those aged 15-19 with sexual experience fell between 19 8 9 and 19 9 5 from 69 to 44 per cent among rrien and from 74 to 54 per cent among women. In rural Masaka the age of marriage for women rose by about a year during the first half of the 1990s while the number of unmarried teenage JJiegnancies more than halved. 15 Teenage girls, it was reported from Rakai in 1995, 'are truly frightened of contracting AIDS. Many of them believe that one can only be safe through sexual abstinence.' 16 This behavioural change had begun very early, during the late 1980s, almost as soon as the epidemic was widely visible, demonstrating once more how destructive the yet earlier, silent epidemic had been. But change was cumulative. In 2000-1, 72 per cent of unmarried women and 65 per cent of unmarried men (including 78 per cent of both aged 15-19) said that they had not had sex during the previous twelve months. Among the sexually active, fidelity to one partner - locally known as zero grazing - also increased markedly and became perhaps the most important form of behavioural change. Between 1989 and 1995 the pr:oportion of men and women admitting casual partners fell by over 60 per ceni. while the number of men admitting three or more casual partners during the last year
The Epidemic Matures 12 9
fell b! 80 per centP The trend continued, for in 2000-1 some 88 per cent of
~arned men and 97 per cent of married women said they had had only their
regular partner durmg the previous twelve months. Only 1.6 per cent of men reported commercial sex during that period. Similar changes took place in Kagera.' 8 Perhaps the most striking aspects of behavioural change were that tho~e .wh~ k:1ew t~e~~se~ves not to have HlV were most likely to change behavwm, that the mrtmtrve was often taken by young women who had ofl:.en been thought unable to control their own sexual lives, and that behavioural ch~r:ge corr:monly took the form of moral self-control supported either by rehgwus behef or notwns of return to a purer, traditional mornlity. Ironically, the apparent role of behavioural change in reducing HIV prevalence in Uganda was the strongest refutation of those who denied the importance of sexual bel::, ''mr in the growth of the epidemic. Three other aspects of Uganda's experience were also distinctive. One was that Its. early and widespread epidemic ensured that an exceptionally large proportwn of people had personal experience of the disease. In 1995, 89 per cen~ of Ugandans smd they knew someone with HIV/Aids or dead of it· the eqmvalent figure in Zimbabwe in 1994 was only 50 per cent. In Uganda, ~ore ?ver, young people were as likely as their elders to have this experience. Its Impact was descri?ed as 'scary, shocking, painful, terrible, and demoralising' .19 A second ~pec1al feature of Uganda's experience was the openness with which HIVI A1ds was discussed and the fact that the main channel by which Ugandans learned of the disease shifted from official or media sources to personal contacts with friends or relatives that perhaps had a greater impact on be~a~wur. Such community involvement, it has been argued, has been essenL!al m all successful campaigns to check the spread of Aids, as in Thailand and among American homosexuals. As the visiting Senegalese journalist pnt It, Ugandans had internalised the threat of HIV.2o The third and most controversial aspect of Uganda's distinctiveness was the r?le of condoms. Until the mid 1 990s Museveni wavered between his personal diSta~te for them, supported by strong traditionalist and Catholic feeling, and the VIew of doctors and NGOs that condoms were an essential part of HIV /Aids control. In.l995 only 16 per cent of Ugandan men and 6 per cent of Ugandan women sa1d that they had ever used one. 21 This implied that the initial reduct:ion of HIV prevalence among young people, if a consequence of behavwural change, must have been due mainly to the other forms previously descnbed. At precisely this moment during the mid 1990s, however, the appar~~t failure of prevention programmes and a softening of overt religious oppositiOn led to a new policy of 'quiet promotion'. The result was a substantial .increase in their use in casual and especially commercial sex, although sel.dom m regular ?artnerships. In 2000-1, only 4 per cent of men reported usmg a condom With their last cohabiting partner, but 59 per cent with their last 11on-cohabiting partner. Among nineteen African countries with known condom usage by men aged 15-24 with their last casual partner at that time Uganda came third only to Botswana and Zimbabwe. 22 ' Some observers drew from this the conclusion that increased condom use since the mid 1990s had reinforced the declining prevalence initiated by other
J 30 Tile Epidemic Matures
behavioural changes. ,\ more radical iuterprelation emerged in 2005 when the Rakai project reported the results ot its rese<Jrcb between 1 ':JY'l and 1UO 3. Altlwugh prevalence there had fallen by ) 5 per cent, it had not fallen significantly among those aged less than nineteen, while incidence bad not declined, as in Masaka. bnt had slightly increased. Moreover, Hakui had exactly the opposite of the behavioural changes reported dscwhere: the age of sexual debut bad fallen. the percent<J.ge of young adulls sexually active had risen, the proportion of men reporting two or more partners during the previous twelve had increased from 2.2 to 27 per cenl, and the proportion of HIV-positive men reponing this had grown fmm 4>i to 69 per cent. On !he other hand, these trends had been balau,·ed by g1 '",''"f condom usc, which had doubled in intercourse between men aged 15-!9 and their casual partners. Over 80 per cenl of the reduction in prevalence, however, was due not io behavi(jural chaiJge but to increased deaths. 2 '1 These clcpressing findings fed directly into controversy surrounding Uganda's remarkable decline in HIV prevalence. Optimists argued ih<•f the positive evidence of behavioural change demonstrated that Africans were capable of solving their own HJV problem hy their own methods of morally guided. community-based reform. Hdigious zealots used ihc llgandan case to insist thi1l the epidemic could not be defeat;;;d by condoms but by 'a rclum to moral values'. Fundamenlalisl dements in the United States Administration touk a similar view. So did Musevcni, who shocked the Bangkok Aids Conference of 2004, by claiming. inaccurately, that llganda bad managed lo cui down the prevalence rate nf ihe pandemic even lhongb il has the lowest per capita uoe nf condoms in sub-Saharan _'\fricu. ·rn our prevention carnpaigns ·we en1phasiseJ on ab;-:tinencc and on being faithful rather Jban condorn usc. Ultirnately vve cannot become a conJorniscJ ndtion .... l C:]<mdoms is just a stop gc~p. improvised measure
Muscveni's speech aroused much opposition in Uganda. The Hakai rcpon llatly contradicted it, giving his critics th,; opportunity to reassert the ABC programme- Abstain, Be faithflll, Condomise that to combine moral and medical approaches and had become the international orthodoxy. As Uganda's Minister of Heahh explained in bis response 10 the Rakai report, 'Our position is still the same: that it is the AHC s!rategy that has been effective in checking B!V/Aids in Uganda. \Ve would nol want to go into a struggle wilh ;mybody over which is better than the oiher.' 26 That struggle. however, was already taking place, especially over the messages to incorporate into sex education in schools. ' 7 As news of IJg;mda's declining HlV prevulence spread, other Afrkan countries scrnriuised lbclr antenatal slatisticio for similar signs. The first w find them was ~ambia. As iu Uganda, c:hange appears to have begun amung young urban women. Between 1993 and 1998 antenat<,l prevalence among wmnen aged 15, 19 in Lusaka fell from 28 to 15 per cent, with a somewhat smaller decline in Ndolu. The chunge was concentrated among women with JJostprimary education, who had hithertu been highly inlecled. whereas young women with liHle schooling showed increasing prevalence kvels. The decline
T/w Epidemic Matures 131 wnong the l1liJrc educated young wurnen was also apparent. less cunspicuous, in the countryside. ll slowed markedly in the late 1990s. A later n;calcu!alion of ~ambia's statisTics reckoned !hal nalional HIV prevalence mnong
i 3 2 The Epidemic Matures
experience, with declining prevalence in rural regions uf early ! ion like Kagera and Mbeya roughly balauced by continuing expansion iuto more isolated arcas.' 3 Elsewhere in the ccmtinent, despite !lie absence of dedining prevalence on the Ugandan scale, there were indications that the epidemic was stabilising and maturing. Senegal was the most obvious case, with adult prevalence held down in the early 2000s to 0.8 per cent. Burkina had a higher ievd, at 4.2 per cent, but this too appeared lo have stabilised, with evidence of decline ;=unnng young urban wotncrLH Prevalence in Ghana ilucluateJ in the early
2000s within narrov.- limits and at lower rates. E A UNAJDS report in December 2004 also stabilisation in Malawi and Zimbabwe, although at much higher levels implying numerous new inih:tions to balance deaths% In Malawi's capital, LilougwL,, :mtenatal prevalence among women aged 15-24 fell from 22 to 13 per cent between 1997 and 2001, with a some-what smaller decline in geueral antenatal prevalence. Bhmtyre experienced a slightly smaller reduction in the generu.l prevalence, but among older rather tban yonng women and most urobably owing to deaths. This ]i;nikd urban decline, howeFer, was balanced by increased rural infection. In Hamre may have seen reduced prevalence among young women during th.e later 1990s, but otherwise little is known ubout the dynamics of its epidemic and the most likely reason for stabilisation of prevalence was that its very high deHlh rate had caught up with the incidence of new cascs. 18 The Botswana government also believed that prevalence was stable or falling and pointed io reduced infection in young urban women, although UNAIDS was unconvinced.l" It was equc.lly unconvinced by Namibia. but that was before its antenatal survey for 2004 first showed a modest decline in infection from the 21.3 per cenl estimated by UNAJDS in 200.3 to 19.8 per cent. A! least the 1\/finister of Health could claim that 'we are really not working in ;•ain' .'1 0 Like everything concerning HIV /Aids, this issue was most contentious in Soulh 1\frica. Antenatal prevalcuce rates there rose rapidly until the late l 990s, including those among women aged 15--19, bnl thereafter :u1e latter declined while the overall rate rose irregularly lhnn 22.8 per cent in 1998 to 27.9 per cent in 2003. The government claimed that this demonstrated that the epidemic was 'sluwly stabilising' and insisted that the iruc prevalence among women of childbearing age wus only 20.7 per ccut, !(JUnd by a population survey '.dwse completeness the government's critiu; doubted." All agreed that ihe growth of the epidemic had slowed, mostly because of increasing deaths but slso because the incidence of new inl(;clions had fallen from a peak around 1997. Olive Shisana, chief author of the population survey, uttributed this decline to 'major interventions like condom distribution and unbelievable behaviour change' ." 2 Pressed to specify the change, Shisana first pointed oul that between surveys in 1999 and 2002 the proportion of youths aged l J -19 whu said they had not had sex during the previous twelve months had from 60 to 70 per cent. A later enquiry questioned this, but all srwlics of period showed levels of teenage sex lower than the stereotypes of the 1990s had suggested, although somewhat higher than those in Uganda after behavioural
Tlw Epidemic Matures l .3 3 cbunge. The median age of sexual debut in the early 2000s was between lb. 5 and l7 years, slightly later than in Ilganda and without clear evidence of change. Frequency of sex among unmarried young people was relatively low. In une survey, l? per cent of those sexualiy experienced had nul had inter-cuursc: during the previous lwdve mouths." The most common bGhavioural clwnge to avoid lllV reported by young South Africans was to use condoms, in roughly half of iheir last sexual encounters, a far hig!Jcr proportion than had been fur the general population '"'rlicr in the 1 '!90s and liu.le less than their use in llgunda. The iunease in distributed condoms fi:mn ISO mi!liun in 1998 !o 310 million in 201l3 was lhc dearest ,:vidence of behavioural cbangeH Young people greatly underrated !heir risk of contracting ll!V, especially Ii·mn apparently steady partners. and 10.2 per cent of those aged 15-2-t were infected in 2JHB. Of tLese, 77 per cent were women, who were alert to lheir danger and for the most part, as in lJgand,, were mnlldcnt that they could rt:fnse sex, although Hl per cent in one survey and 19 per c·ent in another e;aid they bad been forced tu have iL Some 65-70 per cent of people aged 15--1 '-! knew someone eiihcr with HIV or dead !'rom iL 15 Schooling was their main source of inlimnalion · k,:c lag out its importance in lTganda -- along with radio and television. Kevin Kelly's research found ihul in areas of high media penetration and olrong community mobilisaticlll, 'There are signs ... of development of cultures of risk prevention which are scll~perpetuai.ing,' especially among 'thclSC who are kss at ri:ik and those whose life circumstances are most . Another nuted bow optimistic such young people were, in contrast to the disillusionment and fatalism of the earlier i 990s. 1\lost now thought it wrong to !c1n·e sex, have many partners, or have transactional sex. 16 'There are no Iunger anwsvka,' one deciared in 2001, 'people are scared to die of A!DS.' Mark lluuter commented: !lay by day, funeral by li.meral, AIDS bears harder Jown on tile isoka lnascutinity. l'Le syn1ptcnns, recognised by even very young children i.n the to\vnship, couldn't be: :more e1nasculating -- and de-nlUSdJiinising: sorne of the 1nost vir-ile, popular, (-tnd indepewknt bodies arc steadily lrunsfonned into diseased and depenJenl skeletons, slmrmed by friends nnd neighbours .... Indeed, il is at the many lunerals, as 1nrmmers walk in a slow circle aroufld the collin. laking a shocked glance at the deceased's diminutive body, where the conlradidiuns of isoka are most t<·agically played oul
Yct life circumstances were not promising for all young Soutb Alhcans. Isok,l behaviour survived among leddess men and the poor or ambitious young women obliged to use their sexuality lo gain access i.o male weaHh. lsoku behuvionr was strong in neglected rural areas of lhe Eastern Cape, where 92 per cenl of young people claimed sexual experience in 1999, 3 5 per cent of them by age thirteen. It was strong in inform,,! housing arec.s around great cities, where both sexual experience and fHV prevalence among ytmng pcOt)lc were higbest. 48 Siphclo 1\Iapolisa's study in 2000 of young men at an STD cliuic: in the Gugulctu township of Cape Town the most highly infeded area in the Western Cape- described a virtually unchanged youth culture:
1.34 Tile Epidemic Matures i t(nmd that their perceptions relating to HlV/AlDS are greatly inliL · ,·J by pet~r pressure, Although there is a high level of h.no\lvledge cm1ongst n1en1bers of th...:se
groups on how l!lV/AIDS and STDs arc contracted and transmitted, little or no tolfort is made to put this knowledge into practice. Generally, the individuals in my study engage in unprotected sex, and in the proce" risk their lives because of their desires to experiment, achiev0 c;odal, enlGtiunal, 1inanciu1 &upport and rnosi of all
gain acceptance by their peers." Resistance to behuvionral change was s1 rong, too, among migrant mining communities and the of commercial sex and informal enterprise surrounding them. The attempt to transl\m11 such a community, the (arletonville Project, met sm:h apathy and opposition that STD prevalence increased and mineworkcrs' knowledge of HlV appeared to diminishY' The unevenness of behavioural change in South Africa para!lde.l its failure to experienL:e the dramatic decline of HlV prel·alencc seen in although causal relationships were uncertain while rhc: reasons for experience were disputed. The other countries where prevalence stabilised or perhups somewhat declined at that time also showed uneven changes in behaviour. The age of sexual debut rose slightly in most African countries during the 1990s~ but scldum to the extent seen in Uganda." In Lusaka, where lHV prevalence declined, the proportion of never-married people reporting no sexual experience rose between 1990 and 1998 from 38 to 53 per cent for men and from 50 to 60 per cent for womeu, while !he proportion of married meu and women admitting extra-marital partners fell during the same period from 31 to 19 per cent and from 8 to 2 per cent respectively. These changes were reported chielly by the young, especially the more educated young who were most susceptible lo propaganda. hut they were not parulleled in the countryside. 52 Similarly, reductions in sex wilb exira·marita! partners among students in Ethiopia and i~1ctory workers in TanLania seem to have been isolated examples. 13 Consequently, whereas in Uganda in 200(!-l only some ] 2 per cent of married men admitted a non-marilal partner during the previous twelve months, the equivalent proportions were 16 per cenl in Kenya in 1998, ] 8 per cent in 1dalawi in 2000, and 29 per cent in Tanzania in 1999. There was evidence, however, that men were increasingly careful in tbcir choice uf partners." Change was similarly uncFen in the use of condoms. At the beginning of rhc epidemic this was very low throughout sub-Saharan Ali:·ica, partly for Ja,:k of access to them and partly from a widespread dL;laste. As Meja lV[wangi put it, 'Tile men were too manly tu use them and the women were too womanly w insist' Supply expanded substantially during the l9'J0s, reaching some 7 2·± million from olficial sources in l 999, although that v.ras only about fom per adult male per year.ss As in Uganda and South Africa, !bey were useJ almost exclusively in casual or commercial sex und often served in effect to define il: '!he prostitute's identity card', as a Malian put it Often the sex workers insisted on condoms: 'l don't want to dk l(Jr three thousand francs.' One estimate in 200 3 was that they were also used in 1 9 per cent of sexual encounters with non-cohabiting partners. As in South ,'\tHea, use was strongly associated with
'fl1e Epidemic l'vl
l ) 6 The Epidemic Matures
A study in 1997-8 found that approximately ] 9 per cent of women in Kisumu and 23 per cent in Ndola contracted HIV within one year of sexual debut In Senegal the number of women with HIV quadrupled between 1989 and 20()4 while that of men only doubled. By 2004, some 57 per cent of Africans with HIV were women. In the extreme case of Kenya, they outnumbered men by nearly two to one 62 Around 2000 the life expectancy of men overtook that of women in South Africa, shortly followed by Zimbabwe, Zambia, Malawi, and Kenya. As the proportion of infected women increased, so did the number of maternal Aids orphans - who outnumbered paternal orphans in sub-Sal1aran Africa by 2004 - and of infected babies. Africa had 90 per cent of th~ world's Ill'{posHive d1ildren-" 3 A,; IlTV increasingly concentrated among women, so also it concentrated among the poor. This had not been true earlier in lhc epidemic, when those most likely to contract HIV had often been mobile people, as in Karonga, and frequently the more educated. In Lusaka in 199•1, a pregnant woman with ten or more years of education had a 161 per cent higher likelihood of HJV infection than a woman with four vears or less of education. By 1998, however, the euucated woman in Lusaka w;s only 33 per cent more likely 1o be infected, The change was probably due to the educated woman's greater exposure to propaganda and her better opportunities to protect herself. At Uganda's main testing centre in the late 1990s. the higher a client's education, ihe less the likelihood of infection.',. More broadly, the expansion of disease in the countryside, aS in Rwanda anu Ethiopia, was also an expansion among tlle poor. JIIV came to justify iis description as a 'misery··seeking missi!e'. 65 Stabilisation of HIV prevalence might often mean only that deaths had risen to equal new infections, bul it marked a di!Ierence li:om those countries where the epidemic was still visibly expanding. In many of these, especially in western Africa, the expansion was barely perceptible. In others it was more dislurbing. Nigeria, with its huge population, caused nmch concern. 0!1icial antenatal prevalence ligures showed an increase between 1993 and 20()1 from 3.8 lo .5.8 per cent. followed perhaps by a slight decline, but much doubt surrounded these findings, individual states within the federation recorded prevalence up to 12 per cent, and even the official llgure implied thai over three million Nigerians ·were infected. the largest number in the continent outside South Africa. 'The epidemic in Nigeria ... is now common in the general population,' a policy document warned in 2003; ' ... the nation is now threatened by an exponential and explosive growth.'"" Cameroun also caused alarm when reported antenatal prevalence in Yaounde rose between 1996 anu 2000 from 2 to ll per cent and the IaUer Jlgure was also reported for the country as a whole. Pollowing further research, UNAIDS reduced the estimated national adult prevalence in 2003 to 6.9 per cent and the 1\Jinistry of Heal!h to 5.5 per cent, but even these ligures suggested a signillcant and unexplained increase in a country whose epidemic had been rcgarued as low-key."'' The most disturbing of the established epidemics, however, was that in Swaziland, where adult prevalence was estimated at 38.8 per cent in 2003, the highest in the world, and il was nol ycl certain that the peak hall been reached. 68
Tlu: Cpidrl!lic iV!utures 13 7 l'hc other cansc for particular concern was the impaCl of war. Viulence ilself might inhibit the spread of disease, probabb bv civilian mobility, but the aftermath of war was exceptionally )Jar;gerous when mobility resumed. refugees rcturneu, and ol\cn highly iufccted combatants we~e remtegratd Into the general population. This had occurred during the 19'Jlls m i\lozamb1que, where genen,! adult prevalence rose to 12.2 per cent 111 200 3 and was thollgbl slill to be increasing.''" Sierra Leone's prevalence nt thil rime was still low, but was watched with trepidation, Liberia's had risen 70 In Sudan, where rr the most part tbe IHV epidemic was stabilising and maturing, although it remained a laial and terrible disease. ln epidemiological theory, one major determinant of tbe duration of an was Lihe length of time between infcclion and recovery or death. lllV;Aids that averaged about ten years. It would be a cpidt:Omic.
Co11taimlleJLL 1 19
]_3 Containtnent
-[)uring the hile l'J90s and early 2UOUs rcspunse to l-llV;AiJs was rcvilali~cd at both the global and i\frican level=. Le.aders:lip .. " .J ... !l·om tne WHO to the Jumt Tln11ed Natwns PHlgJdmmc on A1d, (UNAIDS) in 1996. but the main dynamic came !l·om the disco~ery of amiretroviral drugs (ARVs) that could suppress, but not cure, the disease. ARVs brought hope. the crucial quality needed to activate health workers and people with HIV /Aids. I\s with previous African diseases. i1 needed such a magic bullet- penicillin for syphilis. dapsone f{Jr lepro:;y- to slimula~e a mass treatment campaign. Yet to make ARVs available to millions ot infected Atdcans required radical changes of attitude among international donors, shifts of power in the phannaceu1ical industry, and infubions of energy into African regimes - infusions that might in turn require pressure by those m desperate need of drugs. Here the source of H!V's power -its slow action and Jorw incubation - became its weakness, f(Jr unlike many other epidemic dis;ascs it gave infected people time to organise a counter-attc,ck. By 2005 only a small minority of Africans needing ARVs were recc1vmg them and rl was increasingly obvious that the drngs. while immensely valuable to individuals, could nut reverse the epidemic. The search for a vaccine, which in could achieve that goal, was still desperately slow. NevcrdH:Icss, between ]996 und 2005 the scene was tr
tl;e
138
!irs! Director-General was Pcrer Piot, a vcieran of Lh,; tlrsl iuvesligalion at Mama Yemo in 198 3. Pi<Jt was quick to stress the continuity betw..:cn !INAiDS and the WHO's l;iuhr,J Progrumme. Its principles, he declared. wert' ·a clear coucern for human rights, a desire to meet the needs of ynung people, a commitmenr lo ensllring a strong gender dimension in policy and programmes, <md the need to ensur<' !hat peoplE living with Jl!V and AIDS are properly involved at all Bill IJNAIDS was more than a medical institution and il insisted that HfV/Aids musl be seen us a multi-sectoral development problc:m, th;;i 'people's vulnerability has social and ecunomic mots, ol!en including margimilisalion, poverty and women's subordinate status'. Tu tackle ibis dcvdopmenl clmll"'nge, each country must shift its f ll\1/Aids programme from its l-leahh Nlinistry to the OHke of the Pre,;ident or Pritne 1\Iiniskr, who would preside over a COIIllCil representing government departments and non-governmental interests, with an Ahls component in each departmental programme. Mnllisectoralism, mainstreaming, and political cmnmiiment became catchwords of the new approach. 'T had two major objectives when l gol into this job,' l'iot laier recalled. 'The first one was to bring AIDS on to the po!itica I agenda in ! he affected countries and the second one was in the north makiug sure that Ibis remains a global issue.' 1 Despite Pint's dynamism, UNA!DS made rather li!ile practical impact during ihe later l '!90s. The end of WliO funding created severe !iuanciul dilliculiies for several natioual programmes. i\lthuugh IJN:\fDS was not intended to prepare national Aids plans in tbe manner of the Global Programme, in reality the new principles demonded a new generation of plans, targeted at polenlial donors. By 2UU2, 40 African countries had produced !hem, otlcn wilh a large .inplll. from lht' local theme group. lf not exactly 'hatched like chickens', many had a disl'"-' lumily likeness, not least becau,;e UNJ\JDS organised a workshop on how to draft them. Lrrge sections of the' plans fur Benin and Togo wae identicaU Many lad.ecl distindil'e national character and showed signs of weariness. 'Llespile advocacy eJforls by lhe Natwrral Aldo Control Programme,' Tan:wnia confessed, 'the National Response to the epldemk is yel to pick up '' sL,flicient momentum. To a large extent things are still "business as usual".'' Some plans blamed what the DR Congo described as 'tire feeble involvement of the: highest political level of Ihe slate', 1 although several naiional leaders did show a new concern wtlh the epidemic dnring the late l9Y0s, notably in ldalawi. Botswana, and Ethiopia. All plans enthusiastically adopted the TIN!\lllS cat,'bwords: Imilli·-tlimensionality_ multi-disciplinarity, deL:enlralisalinn, and commu!Ji!arianism. 'Lesotho has jumped on the global bandwagon that embraced the rnulti-sect<Jl'<Jl approaches,' i! proclaimed, proposing to undertake everything simult::mcously. a feature of many plans th:.t were in reality shopping lists for donors, As Tanzania put it, 'The National i\lulli··sectoral Strategic Framewmk does nol attempt to prioritise among !hose objcc:ti\'CS or strategies. It insists on the comprehensiveness of !he Response.' 1 Iu n:aliiy, most national programmes remained under Health Minbtry control. The problem was that, beneath the rhetoric, the later 1 '!9Us produced lew nevr ideas for dt:almg wilh generalised HlV epidemics in poor countries. This
l '10 Contaitiii!CIIt
clear li'om the two most important policy documents of the lime, both produced by the World Bank, the most as:>ertive institution. Confronting /liDS (] 99 7) was strongly influenced by experience in Thailand and argued 1hat the most effective preventive measure was to target high-risk groups like commercial sex workers, especially at an early stage but even in malurc epidemics." IntCI!sifying action against HlVIAIDS in Africa (1999). by contrast, proposed a more diffuse approach, stressing the need to regard lHV/Aids as a development issue, to expand the resources available and the knowledge base, and to concentrate on 'specific interventions using voluntary counselling and testing ... condom social marketing, peer education, and treatment of sexually !ransmiltcd infections'. One critic described this as rein venting the whee! 7 Of the two main interventions advocated, the targeting of commercial sex workers was questioned by a stucljfo[ Cotonou, Yaounde, Kisumu, and Ndola, organised by !JNiiJDS, which fom1d that the two West African cities with low HIV prevalence had levels of commercial sex as high as the lwo East African cities with high H!V prevalence; more important was that tht latter had lower levels of male circumcision and higher prevalcm:e of HSV--2. The other intervention pressed by the World Bank and the European Union, the treatment of sexually transmiUed diseases, had spectacnliJr initlal success aguinst an early epidemic near Mwanza in Tanzania, reducing the incidence of new HIV infections by 42 per cent, bul had no impact at ail when tried longer a ugainst m<Jture epidemics in Rakai and Masaka where STDs were major risk factor !(Jr transmission." The povt:rty of current. thinking about the Alhcan epidemic emerged vividly in 2000 when a committee of the British llouse of Commons discovered that the country's ollicial assistance to i\ids programmes in Africa had declined, giving the impression that the dep
Cuntaimm:nt 141
means by which HIV was passed on, especially in Africa, where 90 per cent of all such transmissions took place and about l 0 per cent of all babies might be infected al birth in areas of HlV prev
Parcnrs inl(mned of the serological status of their children practically never return tu HlCdicnl care, save sometimes lo report the news of the child's death. 17
'iH flrsl I could nol even walk on the street,' a young mother in Durban recalled. 'I felt t!Mt everybody was jnst looking at me and blaming me for making n1y baby sick. For them it was me who was killing my baby.' Breastfeeding was immensely important to African women, both culturally and because its abandoument might reveal their infected condition and expose them to violence for failing to care !(Jr their child. Yet HlV corrupted even this: 'All the lime J. thought I was breastfecding my baby, but I was giving hint poison.1] 8 The discovery in 1994 !hat AZT could reduce motlicr·lo-child transmission by 6tl per cent transformed the situation in developed countries. 1\ll.er 1998 fewer than .l per cent of the babies born to HIV,positive mothers there were ]nfectnl. But AZT administered during pregnancy. at delivery, and during the neonatal period cost about l!S$1 ,000 per case-'" In 1998 trials in Thailand showed that AZT administered only in the last month of pregnancy and at reduced transmission in a nou-breastfeeding population by 51 per ccm, at substantially lower cost The WHO recommended this for poor
142 Comainment countries, but in the meantime another reverse transcriptase inhibitor, nevirapinc, entered trials in Uganda and w<~s shown in 1999 lo reduced transmission by 48 per cent at a cost of only US$4 per case for the drng, excluding the costs of administration. The WHO immediately approved iL 20 Nevirapinc could have side-effects, did nut combine well with stamli:rd tuberculosis medication, and rapidly provoked resistantnu1talions in the virus, which was not immediately important where only a single dose was given but could hamper later antirctroviral treatment. These difliculties and the rapid testing and approval made: it a subject of later controversy, but ll came to be widely used in poor countries. Some argued, abo. that the expense of administering it made it less cost-e!Icctive than it appeared, an argument against which Piot stressed the 'bt'i'lc factor' that it olTered. Another problem surmunding 1prevention of mother-to-child transmission was that the drugs mighr protect the babies but not their mothers, thus swelling Aii'ica's orphan population. As [Jgandan women observed, 'Women are not incubators for babies. We deserve treatment in our own righL' 21 Moreover, antiretroviral drugs like AZT and nevirapiue gave no protection against infection by breast-feeding. The only agreement on this point was that mothers should either breast-feed exclusively dming the early months or should use only formula foods; to use both, as was common, was to expose the baby to the dangers of both. Exclusive use of formula foods was generally accepiable. however, only to better-of!' mothers and in the more modern settings such as Btltswana, C6le d'Ivoire, and South i\frican towns where water supplies were good and women who did not breast .. liced were less likely to be stigmatised. These were also the areas where women were most willing to be ksted for H!V, which was ese>ential if they were to be selected for antiretroviral treatment. By contrast, acct)ptancc of testing and anl.iretroviral treatment elsewhere was often low, both from fear of stigmatisation and possible violence anJ because no treatment was oll'ered to the women themselves 23 Botswana was ihe first Al'rican country, in 1999, to launch an extensive programme io prevent mother-to-child transmission. By late 2002 some 3,1 per cent: of pregnant women with HIV were receiving AZT, transmission was estimated to !lave fallen by 22 per cent, and the main hospital at Gaborone was the largest antiretroviral treatment site in the world 24 Uganda, with more infected women and Jess money, also began in ! 999 but had fewer than 5 per cent of eligible women under treatment in 2002 and perhaps l 5 per cent in 2004. when every district hospital o!Iered the serviceY UNAIDS estimated that in 2003 only 10 per cent of pregnant women with HfV in sub-Saharan Africa were offered antiretroviral medication. 'My concern as a parent who has lost a child to AIDS,' a Swazi woman declared, 'is the luck of drugs that prevent the transmission of the disease to babies. Those drugs are the only way we know thut bas been elfective in the fight ugaim;t this disease.'"' This issue became especially acute in South Ali"ica. Once the /\.!bean National Congress had taken power there in 199'!, its alliance with Aids activists began to break down. The government could nnt a!Tord N,·\COSA's unrealistic Aids plan and gave higher priority to unifying lhe cmmiry's health
"'·'u... w'JS expenditure ou high-quality hospital trealrneul, giving lh~e treatment lo infants and pregnant women, expanding primary health care ll>r the poor, and decentralising i!s provision w the provinces. real public health expenditure per capit;; fell during the later !990s, the percentage aihxated to 'basic health services' rose between 1992-3 and 1997 8 from JI to .i I per cenl. By 1998 the new goveroment had bui!t some 560 rural cliuics27 Yct this drastic reversal of policy threw medical struci ures ancl starting into disorder for a decudc, noi least because it was curried through with lhe jealous authoritarianism of an inexperienced and il!sccure regime. Demoralised nurses struck over pay and conditions while doctors withdrew to private practice ur left lhe country. fn the poorest provinces like the Eastern Cape:, health systems were gravely weakened. As a result, the HlV/Aids epitbnic was neglected at the moment of its most rapid expansion, apart Ji·om measures like coudom distribution and the treatment of STDs and tuberculosis that c:ould be given through the primary health care system. For much of the later l990s a large proportion of lhe national Aids budget was not spent. ]u contrast to Uganda, the regime refused to work in partnership with NCOs exccpt as its agents, cutting their state support in 1998 li·Oln 19 million to 2 million rand." .Instead i.he government marginalised the (largely white) acrivbts and the Aids Treatment, Information, and Counselling Ccnit'es whose experience of the epidemic was though! to be outweighed by their location in highrisk urban areas anJ !heir inability to flt into the primary health care
syslccm. (\mflict between Aids acilvi,;ls and the regime escalated during 1996·7 wl!cll scandals in the Department of Health also embroiled the ANC executive and the Deputy President, Tbabo Mbeki, who was uppoinled during 1998 tu head an inter-miuislerial committee controlling Aids lvleauwhi!e the capacity of !\ZT to prevent mother-to-child transmission had aroused excitemen!, especially at the Vancouver Aids Conference of 1996, which also focused worid atteniion on inducing the patent holders to make AZT available more dwiiply to poor countries. Doctors at major Suuth Afdcan hospitals began to experiment wilh :\ZT, sb.uwing in 199/:l, a~ in Thailand, that a shorter and cheaper course of the drug was effective. At the same lime Glaxo-Wellcome sought to divert pressure by reducing !be price of AZT l(n' pregnant women in poor cou;,· ·by 75 per cent. Although doctors argued that AZT was cheaper than trea!illg pediatric /\.ids, South Aii,ica's Department of Health decided in October i 998 thm it could not atiord the drug and ordered pilot tests to stop. 'If you have limited resources,' the Minister explained, 'you may decide to put your resources into preventing mothers gelling infected in the llrst place. The;,e are difficult issues we have 1o face.' Many suspected that other reasons included the overburdened health syst,~m's dilllculty in implementing an AZT programme, lhe !:ear that it would encourage pressure to supply AZT to adults wilh HIV /Aids, and the government's desire to oblige pharmaceutical companies to reduce their general price levels."" This was a vitd decision in the history of the African Aids epidemic because it pruvoked the lirsl major political action by lHV-positive Alhcans, the intervculion by patients into their own treatment t!tar was a distinctive feature
144 Conwillmcut
of the epidemic aud was, once mm e, a consequence of the long incubation period that enabled patients to organise themselves in substanti<.ll numbers. Organisations of people with Hl\',1 Aids had existed for some time in tropical Africa, although little is known about them. The first may have been Zambi<J's Positive and Living Squad (PALS), founded in or before J 99! by a small group t>f H!V-posilive people led by \Vinston Zulu, the lirst Zambian to make hb condition public. Jt provided both cm·c and udvocc;cy. 30 By contrast, another body formed in 1991, in Senegal, was inspired by a Dakar hospilal aS the first of many associations stimulated from ahuve by N(;Os or governments, often to provide national representatives ut international gatherings or to popularise oHkial programmcs. 31 An international umbrella organisatic1n, !he Ndwork of AJhcan People Living with was also formed in Dakar in 1993 and was estimated in 2005 to a!liliated organisations with some two million members. 12 Another early organisation was Lumiere 1\dion, created in 1994 by HIV -pcJSitive people in Abidj<Jn; its JiJundL~r-president, Dominique Esmail, died in 1996 a!l:er refusing antiretroviral treatment until ii became generally availablc.' 1 Normally, however, these Ali"ican associations lacked the radicalism lhal made people with HJV;'i\ids such a po\1\:crful l(Jrcc in epickmtcs in the United States, Auslralin, and Brazil. In those countries homosexuality provided a community basis and often a tradition of activism on which to found powerful pressure groups, advant«ges lliJt nvailable to heterosexual Afrkans with HIV/Aids, who were also slow lo declare themselves publicly !i)r lear of a stigma to which homosexuals were already accustomed. Instead of homosexuals. therefore. many activists in Alhca, as in Thailand, were women, sometimes in separate organisations like NACvVOLA in Uganda, so !hat the epidemic h<Jd the c!Iect of empowering numerous women.H It has been suggested, also, that Africa's c!ienteiisl politics !(Jslered private manipulation rather than public agitation, but, if so, it was a recent pattern due to the depoliticisation of the continent by ils one-party states once the activism of !he nationalist period was quelled, and it was a pa:;sivHy broken again by the democratisation movements of the 1990s to which concern with Aids contributed. South Africa was an exception to tile otherwise remarkable Jack of pulilkal turbulence creale
CrmtailliiU'Ilt 145
seclinn of ACT IlP, the American orgauisalion dediculcd to direcr aciiDn on behalf of people with BIV/Aids. \Vhcn NAPWA's leaders refused in March 199LJ to organise demunslrations demanding provision of AZT at a!lordable pric.:s 10 prevent mo!ber-lo-child transmission, T:\C broke a"vay as an entirely ind
146 Containment
Containmetu 1
these contacts providc;d l'vlbeki with the argument, which he set um when opening the International Aids Conference at Durban in july 2000, thai the real health problem was poverty. 41 i\s he later insisted, he did not doubt that UIV was one cause of Aicls, 'But you have got to take into account the fact that extreme poverty destroys the immune system of people as welL So we c:annol. this government, narrow our response to Aids to merely an anti[retrojviral response. It's got to be more comprd1ensive.'" Mbeki may have hoped that his stress on poverty would Hnd resonance among 1\NC supporters, for evidence suggesteJ that many South Africans saw Aids ao only one among many consequences of povcrty. 45 Yel his stance also provoked resentment:
drug's luxidty and the feasibility of administering il. Exasperated at delay in providing a treatment widely available elsewhere in the world, the TAC filed a legal case in August 20()1 demanding that the government instil me a general programnte to satisfy citizens' constitutional right to life."" This challenge to executive authority Mbeki back into ihe dispute, In October 2001, at the black university at Fort Hare, he expressed most liercely the racial bitterness provoked by Apartheid and early Western theories of the urigin of Aids. 'Convinced that INC are but natural born, promiscuous carriers of germs, unique in the world,' b8 declared, 'they proclaim that our continent is doomed to an inevitable mortal end because of our unconqLteruble dc1•ot.iun to the sin of lusL' 50 Three years later he told the National Ass0mbly:
The president secrns to be playing foretgners while our children aud young people arc drying up and dying beautiful cut flowers in a vase.. Thabo Mheki is too proud to admit he was wrung about this HPJ thing. Pride is a sign of a weak leader. ... Mbeki, if you wa!Jt lobe a world leader, go to the UN, Let us find a president w!Jo cares about his own people,''
l f,>r my part will not keep quiet while othus whose minds have been corrupted by the disease of racban, accuse u::;, tbe black people of Suuth Africa, Africa. and the \Nurld, as being by virtue of our Africanness and skin colour lazy, liars, foulsmelling, diseased, corrupt, violent, amoral. sexually depraved, animalistic, savage, and racist
During 2001 South Ali:ica's liberal newspapers, themselves rcc:cr;tly uccused by ANC leaders of racism, replied by attacking Mbeki savagely as a scientiticaily illiterate denialist arrogantly disputing medical orthodoxy: 'President Tl1<1bo Mbeki and his entire government must either get their act together in combating the HIV/Aids catastrophe- now-- or get out of govemment.' 45 The country's leading black scientist, Malegapuru Makgoba, protested that 'To conllatc causation with cofactors through a mixture of pseudoscientific statements is scienti!ically and politically dangerous in societies where denial. chauvinism, fear, and ignorance are rampant.'" More dangerously. opposition surfaced within the ANC when its national heahh committee called on Mbeki and his Health Minister to acknowledge that HIV caused Aids in accordance with 'the predominant scienlilic view'. And in the local government elections of 2000 the ANC lost votes to parties that promised free antirelrovirals 10 pregnant women."' In October :2000 Mbeki told his national exn:utive that he was withdrawing from 'the public debate' on the science of HIV. Although this proved untrue, it created a space during which developments ou other fronts changed the situation. Between mid 2000 and April 2001 lhc price of antirelroviral drugs to poor cmmtries fell by 90 per cent owing to cumpetition from generic producers in India and elsewhere and attempts by multinational companies to head off the challenge by reducing their own prices, In April 2()()1 the Pharmaceutical Manufacturers Association of South Ali'ica abandoned a lcmg,,standing legal aH8mpt to prevent the government from importing generics, largely because Tii,C intervention had led the court to require the companies to produce details of their pricing procedures. 48 Although the T!\C hoped that this would lead to rapid provision of antirel.rovirnls for adults with l-H V/Aids. in fact the government's intentions went no further than the prevention of mother-to-child transmission. In April 200 l Nevirapine was at last approved for this purpose. The l1rst of ] 8 planned pilot sites began to make it avaiiablc, but the Health Minister insisted that this \vas designed to test the
A critic described these views as 'the ultimate victory of the apartheid
mindscl' Jn December 200! tbc Pretoria lligh Court ruled that 'a countrywide mother~to-chiJd,transmission programme is an induclable obligation of the slate' wherever the capacity to provide it existed." Government appealed lo the Constitutional Court on the grounds that this was an interference in the functions of the executive, but wit bout success. The Health Department tried to insist that experience at its eighteen trial sites must be analysed bef(Jre wider treatment was attempted, but in February 2002 the governrnents in Gauleng and KwaZulu annonm:ed that they would make it generally available:. This split within the ANC leadership produced the most li.orocious crisis in the entire sequence. for Mandcla backed !he demand to expund the pmgramme and i\lbeki's loyalists in the national executive accnsed the former pt~esideut of undermining his successor and flouting party loyally. 51 ln doing so they dis Irihntcd an extraordinary document, apparently authored by Peter !VJ,,kaba, sue;,, '" die of suspected i\ids, which denounced antiretroviruls as pDisons and the orthodox interpretation of tHV//iids us propagated by vested int,crests including pharmaceutical. companies, 'governments and olllcial health instiiutiuns, inter-governmental organisalions, oliicial medical licensing and registration institutions, scientists and academics, media organisations, NGOs and individuals'. 1 ' This paranoia was too much for the senior African civil servants in the Heahh Departrnent, who threatened resignation, ror several powerlhl Jlgures around JV!beki, and e''entually h1r ibc Cabinet, which in April 2002 appoinled a Task Team to arrange the general provision of ncvirupine to HIV-positive pregnant women and agreed lu multiply !he Aids budget !lve times between 2001--2 and 2004- 5, while declaring tha! il would s."ek to reduce the price of antirci.rovirals further before they could be made generally available to people with Aids." Three months lata the ConsliiTL~ tiona! Court ordered the government w make nevirapinc available to pregmmt womeu in al! sectors of tbe public health system. By l\1arch 2003 mosl
14 I) Contai11mcnt provinces were complying, but this revealed the incapacity of many health systems to supply more than a fraction of those in need."' The struggle over perinatal provision in South Africa was a key point in making antirelruvirals available to Alhcans, fori! not only stimulated political activisru among people with HlV /Aids and campaigning organisations like Mt;decins sans Fronticres but introduced the generic drugs that were to m
Contaimnei!l 149 comply, and many outside the programme complained that it was only for the rich, The nmin achievement was perhaps to train nearly 200 medical workers to adminiskr anUrelrovirals 61 In Cote c!'lvoire the scheme also treated about a thousand patients but operated on different lines, beginning with the cheaper d-ual therapy, subsidising the prh:e for most patients, admitting them at earlier stag,,s of disease, and selecting them chiefly by ability to pay or by their active participation in associations i(w people with H!V/Aids, \Vhen dual therapy stimulated resistance, so that many patients abandoned a scheme thai seemed to do them no good, it was dropped in favour of triple therapy aud higher subsidies, although !he expense still led many to li1ll away. Further expansion was frustrated by the country's growing politicat" disorder, l'vllcanwhile, Senegal launched a successful antiretroviral programme of its own in 1998, but fur only 58 patients.'" The chief obstacle to these initiatives in the late 1990s, the cos! of drugs, was lmlken in February 2001 when Cipla, an Indian manufacturer of generics with no research and costs, offered to seH triple therapy drugs for :£3 50 per person per year. The eliectivc minimum price remained at or slightly below this level for the next four years, Producers also simplified meJicalion by combining the dmgs into a single tablet Activists within and uuiside UNt\IDS realised that this breakthrough crealed an opportunity to revitalise programmes and raise new levels of international funding thai, for the llrst Hmc have a drmn;,tic e!Icct on the epidemic 'fhe World Bank had already letb.eu the initiative in September 2000 by making a billion dollars available in grants or concessionalloans, In june 200 l a special sessilm of the United Nations General Assembly agreed to establish a Global Fuud f(>l· Aids, Tuberculosis, and Mialaria with an ambitious target of providing lJS$10 billion a year for low- and middle-income countries, whereas total tllV I Aids expen .. diture there iu 2001 was only !JS$2.1 billion, ln reality, by January 2005 the Fund had approved some liS$ L 7 billion in grants for HlV /Aids projects, mostly in Africa. Tn addition, the United States governmem announced in January 2003 a PresiJenHal Emergency Programme for Aids Relief (PEPFi\R) to make available US$15 billion over five years to fitteen countries with high HIV prevalence. twelve of them in Africa, Some US$2.4 billion of this money was allocated during 20(J!l,b 3 Other limds were made available at the same perioJ. wilether by philanthropic bodies like the Gates Foundation (especially in Bohwana). debt relief (as in Cameroun), bilateral donors. or other sources. Between 200 l and 20()4 global t\mding for HlV /Aids in low- and middleincome countries trebled to IJS$f, I billion per yt~ar, UNA[!)S reckoned at that time that such aid provided 50 per cent of all BIV /Aids spending ill subSaharan Afi·ka, national governments provided 6-10 per cent and the remainder came h·om development banks or from families and individuak64 Not all uf this money was spent on antirctrovirals. By 2004 some llS:£550 million per year were devoted to vaccine research and there was talk of multiplying this by factors of two or ten, 65 Tbis was a new enthusiasm. In principle a vaccine was the only known way to end a viral epidemic [n the early days of HlV/Aids optimism was high, A leading American spcocialist estimated in 1984 lhat it might lake two years to produce u vaccine, ln 199 i
l 50 Contaiwllmt Montagnier stretched that to Jive. Before long, however. it was realised tbm this 'will be one of !he most formidable challenges ever assigned to health sciences' -" 6 Three fundamental difficulties faced tbe scientists: whether a vaccine could stimulate an etfective immune response if the virus itself did not do so; whether a vaccine could overcome tbe defensive effect of HTV's extraordinary speed of mutation; and whether any single vaccine cuuld be ell\x;iive against the many lliV subtypes."' In practical terms, moreover. there was no animal model 011 which potenliul vaccines could be tested and no researcher dared produce an attenuated live vaccine of the kind generally most effective, le,;t it should only too live. ln addition, there was no great public pressure in countries for a vaccine, since HfV was rclalively easy to avoid there, and little incentive !(Jr pharmaccuiica.l firms 10 invest in it, since any profits lil,ely to come Jhnn poor countries after a lung research programme would be far outweighed by the costs of lawsuits if the vaccine failed. By l 997 only about l per cent of international HlV /Aids research spending had been devoted to vaccines,"B but it had become clear thal publicly funded research was essentiaL Ii began snbstantially in the late 1990s in the {Jnited States and through the International Aids Vaccine Iaitiative. Several African conn tries were involved in the new vaccine experiments. In 1999, after much controversy, ffganda undertook AJhca's lirst small-scale trial, which 'demonstrated the feasibilily of condudiug scienlilkally valid vaccine research' there."'' Five year;.; later a more ambitious trial in Kenya was successfully conducted. but dcmonslraled the indli:cliveness of the vaccine. An important South African research programme began in 1999 aud pul its first vaccine into iniiial trials in 200 3.7° By 2004 none of the 30 vaccines subjected lo trials had shuwn any serious promise, but 22 were still being tested. The responsible v\'HO otlicial warned at that time thalno vaccine ctruld be ready for administration before 2015 at 1he earliest. Sceptics fean;d that none might ever be possible. There was more optimism about the possibility of developing a microbicide that women could use to prevent IHV entering their bodies during intercourse. Long neglected, this wa:; hoped to yield a marketable product by 20 l 0 or soon ali:erwards.i 1 Before lhe ilnance mobilised by !he Global Fund and other institutions could be used f(Jr antiretroviral programmes, it was essential to expand lliV testing facilities to identitY who needed the drugs. Voluntary cnunsdling and ~testing (VCT) had been pioneered by TASO in 1990 at the Uganda Aids In!ut marion Centre, which by 2002 bud expanded to 70 sites, had tested over 700.0ll0 people, and had probably contributed signiflcanlly to Uganda's declining prevalence rates. VCT sites were opened in sever<.ll other capital cities during the J 990s, but in 2000 UN AIDS estimated that only 5 per cent of HlV-positive people iu the de\'eloping world knew their slatus.'' 2 Although lhere was evidence that such knowledge encouraged beha\'ioural change, there was nevenheless much resistance to seeking the information so long as it might incur stigma without uffering effective treatment. fn one tlial in Zambia, fewer than 4 per cent of !hose invited agreed hl be tested and fewer titan half of those returned for the result. 71 Once aniirctrovirals became available in the early 2000s, howet·er, medical authurities and donors undertook a n1assive
Cont11i11ment 15 l expansion of lhc programme. By the end of 2!l04 ZambicJ had 172 VCT sites. Kenya over 400, and South Africa uver ),000 iat the great majority of primary health care The combination uf VCT and antirelroviral drugs had important implications fot the human rights principles that had governed international Aids policies since the time of jonathan !Harm. Health adminislralors in southern Africa had llften chafed against these principles a]J(l demanded that HfV /Aids should become a nulifiable disease that patients and doctors must declare and possibly accept treatment f(lr. Extremists like Brigadier David Chiwezu in Zimbuhwc and lils Ciiizeus AIDS Survival Trust urged mand;;tory aunual testing, tlw introduction of HiV status certificates, and the criminalisalion of lHV wmsmission." The appearance of antiretrovirals stimulated new demands for notitic<Jtion and led some to propose mandatory treatment. A less drastic CJlterna!ive or mufine testing was atlvocated hy a veteran !\ids resenrcher, Dr Kevin De C:.ut~h, uud thG Centers for Disease Control in the lJllited State:;. Given rhe scale uf Africa's generalised epidemic. \~Ve tluuk rhat Africa woulJ now bendh ruost from an approach to HlV/l\TDS based
on a public lwalth model thm im:ludes voluntury counselling, testing. um! partner noti1icatiun; rolliJue l-UV tet:~ting in prevention .services such us prevention of 1nuther-tu-child trarLsnlission, and lreatinent for sexually !ransrnilted infection$; routine diagnostic HIV testing for parleuts seeking medical treatrneut (e.g., fur iu.ber._·ulosls); and enhanced access to HIV/AlDS can:~./ 6
Routine
152 Co11tainment Dcvdopmcnt !vlinistcr wurned in January 20ll3. "Whai reully need to do is to look at basic health care systems that reach everybody .... The whole Western, Enrupcan obsession with anlirdroviral drugs is not where Africa is. except in the cities. The activists of IVIixlecins sans Frontiercs, the WHO, and UN AIDS disagreed. 'Antire!roviral therapy is not unly an ethical imperative,' HNAIDS insisted, 'it will also strengthen prevention efforts, increase uptake of VCT, reduce the incidence uf opportunistic infections, and reduce ll.. · ilrden of HIV /AIDS -- including the number of orphans - on families, communities and cconomies'. 80 \'ice-President fustin Molewesi, who headed 1\ola!awi's IHV/ Aids programme, expressetl' a widespread African view: I think there is too rnuch fcnr [Jbout antirdrovirals (i\RV::~) being introduced in a noor developing country and I think the lear is that we will not be ,,blc to manage these complex drugs and therefore will lead lo resistance strains being de\'doped in Africa. wl;ich will sumehow lind their way to the west. AnLl therek.>re the best way to prut.ect the \.Vest is not to ailo\v these AR'/s progranlmes in poor developing countries. But that is of course false. \Ve have run in this country the best TB progratnn1e in the \-Vorld. \,Ve have received award.s for it. VVe liave proved that you can have a directly observed therapy progranune irnpll..':Ine.n ted in a poorly rcsourccJ country like Malawi. Now, what is so complex about ARVs? You take one tublct in the nwrning 1/vben the sun con1es up. You take another tablet in the evening when the sun gGes do'i.:li!L You don't even need a wri.shvatch. 61
Africa's first national antiretro\'iral project was Botswana's "'\lasa (~·Jew Dawn) programme, launched in january 2002 and financed eqnaliy by the Gates Foundation, lhe Merck pharmaceutical firm, and the Botswana government. It was driven by lhe political commitme!ll uf President MLlgae, who warned his people that, with the second highest HIV prevalence in the world, 'We are threatened with extinction', and by the most e!lkient and wealthy government in tropical Africa. Yet it faced the intense stigma still attached to the disease. As a programme manager recalled, '\>Ve assumed once we started giving out the drugs, people would Hock to get tests. No way. Everyone still thinks: "AIDS isn't me. It's the olhc:r guy."' 82 Alter nine months only L,6CJO people were being treated: alter 22 months. nearly ] U,OOO. For the !irs! two years the patients were mainly the most advanced cases, with CD4 cell counts averaging only 50-60 celis per cubic millimetre, whereas the maximum entry point to the programme was 200 cells per cubit: miUimetrc. However, even these disappointing numbers almost overwhelmed the medical s1u!T, who learned -· as later programmes learned - that the admission and initial treatment of patients, especially advanced cases, was extremely demauding on the time of trained physicians. Patients were expected to attend fortnightly for tbe tlrst month, monthly lor the next three months, and every three months thereafter. Each had farnily member ur li·iend to supervise regular drug taking. The programme managers learned that antire!rovirals vvere eminently Hlchable - they had to be locked away like narcotics - and that tracking mobile patients, ensuring adherence ro the drug regimen, and monitoring progress required elaborate technical and administrative procedures. And learned that they cuuld not operate such a programme
Cuntainmeut
l S3
by themselves lmt rmtsl involve the privak sector. NCUs, the community, and above all the patients. who 'must be empowered and equipped lo participate maximal!y in their own care'.' 3 Despite ull thcsL~ diflh:ulries, however, bv September 2UiH the programme was lrealing between 36,000 and 39,00lJ people, or perhaps half those needing treatment, the major obstacle lo further expansit>n being the scarcity of health workers, as throughout the region. 'Many c>f those who have taken the cocktail of ARVs talk of a '·rebirth",' u newspaper report,;d. H was the most. successful programme in sonlhem Africa, rivalled i11 Namibia (7,500--11,000 treated, or 28 per cent of !hose digible), Swaziland (5,000-6,500, or 16 per c,;nt), aud Zambia ( 18,000 22,000, or 13 per cent). The least successful was in 'limbabwe, obstnl<'led by its acute financial crisis and the rethsa! of the Global Pnwl for three years to channel funds to a govcmment whose probity it distrusted. In eustern Aldca in September 2004 the most effective progrcnmnc was Uganda's, which was treating between 4U,UOO and 50,000 patients, or some 40 per cent of those needing it. This programme had begun more slowly, because Uganda was a poorer country than Bot.swann and depended on inlernational donors if it was to supply free drugs, which it did not begin until 2004. Bdore !hen. it was reported: Patieuts desperate to receive these drugs oflen gu t.u extn~me lengths t.-; 1nubilise funJs ;-;uch as selling .. ~attle or l.und, their nlust precious assets. Chi1drt;n mil}' be denied their c~_lncaUon because scbooi fce.s arc used IO purchase drugs.. OHen patients raise I he money for a [(,w months supply of antirdrovir~ls, but soon ihey cuJ1 lcHtger afford drugs 8nd treatrnent has 1u stop. Patients and tlwlr farnilies lilute, having sold t!Jeir land and Gillie awl yel ure still in poor heuilh. 81·
011ce tree drugs became available, however, Uganda had tbe experience aud trained stitff to expand the programme quickly, delegaJing all but the most sLi!led duties to nnrses and paramedics. Tl also opened in 2004 an ln!:cctiou:; Diseases lustilute designed to train medical practitioner,; !i·,Jm across the conlineul in antiretroviml therapy. 87 Other cou~1lries in eastern Af\·ica relied on internationcd funding but lacked Uganda's preparatory experience. In 20():1 K1:nya launched a piecemeal programme estimated in April 2005 to embrace some 3 7,680 recipients. Ethiopia initiated a more coordinated campaigu in January 2005, but Tanzania's plans were frustrated by repeated delays and a gravely depleted health service, so t11at in December 2UO± only about l per cent or Tanzanians needing antlrctrovirals were receiving them."' Owing lG civil conllict, Cote d'Ivoire, the pioneer of antiretroviral treatment iu weskrn Ati:'ica, was unable to build upon its early experience: in Seplcmber 20(H Ollly 5 per cent of its people needillg the drugs were receiving them, although plans and limding for rapid er;pausion ('xisted. Senegal grudua!ly expanded its free dmg supply ibm Dakar into the provinces. 89 The most aclive progran:mes were in C:abon, a relatively WGalthy country witlJ probably the best medical system in tropical Africa, where 29 per cent of those needing antirctrovirals received them in fune 20CH and the first manufacturing plant in the region opened cady in 2005, using Bra~ilian Cameroun, where 1\Jedecins sans Frontiercs pioneered triple in 2ll01; and Benin,
1 SJ Contaiwneut which subsidised drng prices. 90 The main problem area in Wcst Africa was r'!igcria. with its large population and exceptionally weak public health service. In 2001 President Obasanjo ostentatfously bought enough Indian generic drngs to supply IO.UOO adults and 5,000 children at heavily subsidised prices, at a time when over 500.000 Nig,""ians needed them. Aller some initial hesitation, uptake was enthusiastic, but capacity to administer the dmgs was slender. By Febmary 2005 some 20,000 patients were receiving antirdrovirals. The international iix Nigeria was 400,000 at the of 2005. H was one of the Aldcan countries giving greatest cause for concern. 91 The olber was South Africa. where the conflict surrounding 1he prev
Containment 1 55
were themselves IJIV vositive, and nearly half were ;exhausted and stressed'. Tl!rcc months afler the plan was approved, not a single pcr·son had started lrealmeul except in the Western Cape. Only the 'I'i\.C's threat of legal action started active drng procuremenL although it took another year to award lenders, mainly to local and generic producers 95 In April 20()4 Mbeki announced that the target of 53,000 new patients would be transferred from March 2004 to March 2005. Iu fact lhe public system was probably treating about 30.000 patients in 2005. In tbe public and private sec1ors combined, about 8 per cent of those needing antiretrovirab were receiving thenL \Nailing lists in most areas were said to be slwrt, because the initial demand was disappointing and the criteria for treatment were interpreted stringently. For those who received the however, they often came as salvation: 'J can now once more dream and hope to live long enough to im plernen I my dren ms. '% Tbc wa:; especially import ant in implementation and those rccdving the drugs. lts style of activism bred resentment among government loyalists ulld conservatives, leading late in 2004 to a march against ii by lraditional healers demanding a larger rule in countering the epidemic. Nevenheless, 'globalisation from below· was spreading the Tr\C style to countdes where people vvilh HlV;Aids had hitherto been passive. As an llL'Wspaper repcJrted, 'H was u heart-rending experience to watch on CNN !he demunstration by a group of H!V-posilivc South Ali"ican youth asking lheir g(wernment to speedily and elleclively makt; anUrdroviral drugs available.' Addis Ababa had seen its own Jkst pmlesl of this kind in 200 l, when its main organisaliou of people with HlV/Aids, Dawn of Hope, held a demonstration. said to be :lO,OOO strong, to demand cheap antirctrovirals 98 J\ilust such organisations conlincd themselves to provldiug care, working through ilftlcial channels, and increasingly acting as intermediaries lc1r !Ire c~istrihutiun of clrugs, an opportunity that artradcd many new associations. ACT-UP :\bidj;m was thought to have been domesticated in this way by receiving free antirelrovirals. 09 But in Nigeria, Namibia. Kenya, and elsewhere. sssol'iatioos of HlV-positive pc~ople extrted significant pressure to accelerate drug distribution. In i\1alawi's general election of 200'1. 'Candidates Ji"om lhe president down read1ed out to a constitueucy once shunned as untouch<~hle by admitting thul they had lost relatives to Aids and promising lc) provide l]-ee lreatment.'lOn At tlw Barcelona Conference on HlV/Aids in July 2002 the vVHO gave an overall target for the anliretroviral campaign to supply 3 million people in low- and middle income countries by the end of 2005. The strategy was to begin inw1ediately and use the programme io strengthen the massive weaknesses in health systems. The programme began but accelerated" During the second half of 2004, lhe number receiving antiretrovirais increased fi·om 4cltl,OOO lo 700 000, including an increase from 150,000 !o .l10,000 in sub-S"haran A.Jdca, the last figure being about g per cent of those needing !hemHJJ The task for 2005 was dcumting, especially in view of the facl thai anoiher S million people in the world were likely to be infected during the year. But Piot was optimistic: 'l believe 3 by 5 is already changing tbe
l .56 Contaiwncnt dynamics of how we deal with AlDS,'W" Some long-held fears were proving well-i(mnded. ~Iajor allegations of corruption emerged in Kenya, where the head of the National Aids Control Council was g.:wkd and lhc Council was accused, early in 2005, of mic;appropriating vast stm1s of donor 1\.mds. i\ tribe of MONGOs (My Own ~WUs) came into being. Bogus an!iretrovirals wen; on sale in several African !n 2005 a syndicate tvas repottcd to have smuggled over 43,500 of cheap drugs !i-om Africa to Europe. 103 Other tears, however, had not been fulfilled. As in Khuyclitsha, adherence to drug regimens wac; generally higher than in IVestern countries, partly because !he composite drugs used in Africa -~ one tablet twice a day were easier lo take. Study in Cameroun showed that this generic regimen was equally effective in reducing viral load. Drug resistance was no higher than in the \Vest. or the flrst patients treated in Senegal in 9'Jil, 81 per cent were s!i!l alive af!er three years, a remarkably high proportion in view of the advanced condition at ·which treatment beganw 4 Ho\v long patients on antiretrovirals might expect to live was unknown, an estimate at Khayelitsha was ;m average of sligbLly over eight. years. The fear that taking amirclroviral drugs might practise risky sex was controverted by the only study made, in CClte d'Ivoirc. 105 Yet even if anlirelroviral drugs were made avuilabie to ail advanced cases, they would have litHe direcl impact on the epidemic, becau,;e 80-90 per cent of infectious and sexually active people were s1ill in BIV's lung incubation stage. 106 The main impact of antire!rovirfJIS could be indirect, inducing people to learn their HIV status and behave accordingly, by lessening stigma, and by reducing the number or orphans, In lhc short term. anlirelroviral treatment was likely to withdraw resources - especially human resources - from other forms of medical work, although the campaign for cheaper drugs was likely to benefit heallh systems as a whole. Competition for access to anti· retnwirals might breed dangerous conflict, althougl1 there was little indication of this by 2005. fn the longer term, anlirelroviral treatment was more likely into i\frican to strengthen health services and enable them to penetrate societies, as had been true of ihe great epidemics of the past such aS the smallpox, syphilis, and sleeping sickness outbreaks that had first drawn colonial doctors into mass treatment of African diseases. As drugs converted Ill VI Aids into a chronic disease, stigma was likely to decline and care to become less burdensome and more willingly undertaken. By demonstrating that women's disabilities endangered lhe entire society, the epidemic har! already advanced female status and empowered many women activists. The mobilisation of people with HIV /Aids had not only introduced patient power into medical systems but was a major step towards the repoliticisalion of A.lbca after the long stagnation of one-party rule, a repoliticisation to which NGOs had also contributed largely. In the long term that was likely to slrenglhen Africa's weak slates, as mighl their contml of access to free autiretmvira!s, provided they could maintain thai: control and prevent il collapsing in a welter of piracy and corruption, HIV /Aids might, as pessimists predicted, reduce the cot1!inent to ·a 1\/lad ,\lax scenario', but responses to the epidernic might eqnully strengthen the stale, as innovations had oll.en done in the pasL That,
C.mlaimnenl l S 7
however, depended on continued int
Couclusio11 J5l)
Conclusion
1
'\his book began by st1ggesting that a history of !he IHrican H!V /Ajds epidemic to 2005 could offer four valuable perspectives. One was an answer to President Mbeki's question why Africa had suffered the nwsl ta:rible epidemic. The book has argued that the presence of the natural ancestor of HlV and the full range of viral subtypes in the western equalonal reoion of Aldca is compelling reason to believe that the epidemic began there. Tl~e virus existed in the Kinshasa region by 1959 and began to take epidemic f(Jrm there by the mid 19 70s, perhaps as a result of the wide sexual networks and decayed socio-economic conditions of the ciiy. For nearly ten years, and perhaps ~wre, H rem:1ined a silent and unrecognised epidemic. During lbat period, subgroups of the virus were carried away from !he epicentrc to mlect eastern, southern, and western Africa. Their impact on each rcgwn was shaped by its patterns of communications and mobility, . ils ~cnder relationships and sexual networks, its disease environment and socHl-ec~nonnc arrangements, But in this Jirst HTV /Aids epidemic, the virus _nuiml!y established itself silenlly within the general heterosexual populatwn hdo:~ any steps were or could have been taken to check it. Africa had lhe worst epidemiC because ll had \he Jirst epidemic. Sccond, this silent expansion was one way in which llw unique charflder or the virus mildly infectious, slow-acting, incurable, fatal- decisively shaped the epidemic and human responses to it. Those responses were slow, for IIIV's long, asymptomatic incnbation period and the eventual appearance of diverse opportunistic infections defied prompt action and fostered uncertamty and deniaL Instead, people with Aids faced a slow and painful dea
158
hoU1 from i\trh:a',, of human colonisation. from ils twentiethcentur} of sociaL commercial. and inlelieclual change, and fhllll Hs most recent history of economic and political crisis. Already. moreover, the copidemic is reshaping patterns of women and yoLtng pc;ople to nsscrt themsehces for their uwn protection, obllging those with HlV /Aids lo organise themselves to secure treatment. requi.rlng govern-ments tu apand their medical and social care, and alerting the mHsidc world as never before to the realities of disease and poverty, Finally, a historical perspective reveals the chaructcT of the epitkmic. ln 2005 ihe reasons li.Jr Uganda's declining fUV prevalence were uncertain, but the fact itself was not, and it contrasted with continued expansion in parts of southc:rn A.J'rica and in regions affected by the aftermath of war. As the epidemic had matured, so the balance of inlccliou had sllll\.ed bclv,/eeu n1en and \Vurncn. richer and poorer. Antiretroviral
protnising
to convert an epidemic disease into a chronic complain!, had rE!ised new questions about lmman rights, new dilemmas for medical administrators, new partnerships between donors and recipients, new dang,ors of corruption and political competition, new relationships between dodors and patients, Yet in 2005 the epidemic had reached only 'the end of the . Although over 25 million AfriccHJS had HfV/Aids, 12 mi!Jion children had lost a parent, and O\'er l 3 million Africans were dead,' experts warned I bat the worsi was still to come, both for Ali-ica and the world. ln 200 3, RicharLl Feachem, Director of the Cloba! Fund, speculated that the pandemic would nol before 2050 or 2060 2 Yet tb<Jl was not inevitable. the meuns to eradicate HIV/ Aids did not yet exist, the means to contain U were already at hand. The virus no longer held the iuitialive that had explained its success.
Oriuins (page,; 3-9) 161 J1 l J
L"Jotes
1-± 1\
16
17 18
1 Intentions ([Jages l-2)
19
Pre::;iJ.ent f\1bc_'ki'::l Jd1cr in vvmld leaders, 3 _--\prH 2000, lHJp;j'v,'V\i'A'.vintSIHYth.ild/aids/ ne1\'sl!ettcrmbeki.him (acce.:.sed 7 "i\Jarch ..?.GOS}. j.C. C:ald1.vell, P. Caldviell. und P. Quiggin. 'The socldl context of _.1.JDS ln Africa,' PopulationandDevelopiHentRLview, 1 S (l981J), 185--l.::i-t. P. Piot, J\'1 Banos, awl olhers,'Tb; gk;ha.llmpad of HTV/AlDS,' Nu.tw·r:, 410 (2U0]). ~?5.
)(_)
Origi11s (pages A.G. i\Iotulsky. j. Vundcpir-Le, und GJ\. frrtscr, 'Population Amerlt'flll
other~.
2 .l 4
joumal
'Evidence
::;tudies in (\mgl), 1,' Nahrnias, A. A·1otuh;ky, and virn::> in centrd 1\frica. 'l'he river: a journey back to the soun:e of HIV ~wd
Hunw.n Gent:lics, ] 8 (1 Y66 ), 514 ·l 6-;
( 9 50.' Lancet. 19Hh/i, 12 79--~0; E. 11ITX-,- \lt.:printed, Londtm. 2000), Pur detailed accounts of these cases. St:'e IIllOpt:r. l
l7l3. t\:.L
{cd..). The L'ambridgc wolld flisi!Jry of Jwman disl.!nse l Cambridge, 199). ), pp. 5 52, 612, HlY. 1100. N.D. VVolfl~. J\1. Swit:~.er. and other:~. <::Kquired simidu retrovirus infediuns in cetdral Al'ricLHl huulers. l.illlL'f.'L 363 t2004), 9 F. DamonJ, i\1. \Vorubcy, and other~. 'ldenH11caliun uf a propo~ol fur a in HIV 2 ciassilicatiun,' J.J\.1--/R, IUL lTalJil, G.M. anLl 'A1DS os a zomwt:>is: tions,' Science, 207 (2000.i, 60?-14; J, YJmaguL'hi, ,--\.S. \'allmi. and othcrE, 'Evaluation uf HTV 1 0 isolates: identification llf five phylugcnetic duster~,' ilRfilL ] 8 (_.:~002), P /\. Valiari.
6 7
type 1 gtoup N iKo!ate- from Cameroon.' i1HHi{,
-~0
D. Candotti. ('. Tareau, and othas. '(knctic ' !lRllH. 15 { l9Y9), -309- 14; N.
bolale:::> in Llt:ntc:d df:grce
10
11
160
21
hnman infection vt'ith an flTLV
human immunodeiicieHty vint.s
25
26 27
anJ V3 scrutyping uf lHV type J
in th~ Democratic H.elmblic of suggests that }-UV-1 pandemic originoled in ,\!rica.' /Ollfllal of' Virology. 74 10498 50 I. This account b hxken chiefly J.\-1. C'ofiln, 'Molet.:ular l>iology of Ill\.' in K.1\.. CranduH (ed.), The n•ollldon of U1V (Ballimnre, J Y9Y). ch. l; J.F. Hukbinsun. 'The biology and evoJuriun of filV,' :illtJI!al RevieH7t:{ ilnthrupologlJ. 30 (2UOJ), g_5 .. J08. Cn1ndaH. 11voiiilion. p. xiL
l.
B. l-\c)!.bcr, Mnlduon, a.u,J dthcrs. 'Timing tl1e <:mcc.stor tJf the HIV-1 ::,!rains,' Scietu'c, 28B \.2000), 1 /b9-Yb; k. Yusim. ~--L P::;eleJs, and others, 'Using iOHI1l!Ill1deill"icncy virus type 1 sequences to infer hbtoriccd fca11rres of tbe lll1ll1Ul1l': t>yndromc epid~I.niL dUd humun illllllutwddiciency \'ifUS evo!utiorJ, l'inl. rums. R. B, 156 (2UO I). 857. ~- [ :-lcdPtni, K. Strimma, and others. 'D,ding the .._·uum1on ancestur uf SlVq_,z and IHV- J grO!lp l\"1 rHd lhc drigin of lHV-1 using a nc-\'\- mdlu_;d to tmun,er clock-!the mokcular cvulution,' g-J.:)TB Journal, l). 27l>-B. Eailcs and ol.he.cs, 'Jl_ybrid B. I~urber, J. Theiler, and 'LimH.tiions of a multYular clod; apylkd to COJl~,idcration~ of the orlgi11 of Hl \' -1 ,' Sdew.c, 2 KO (199(:·n, 1 H6S. M. l;:nnc:~-Ct!rdlo, J.l<'. Quaderi, and utllLfS, 'Drug resisiallce le~ting prm:ides t'~\~idcucc of !he glubcili"tat:,e u!" simiau immunoJe!iciency vtrtb in Pitil. Tr(1n.s. R. Sot'. Lmd. h, J)tJ {20(1] ), ~ll-2[! P PiLll atll1 .rvL Bar1u~,'The of HI\' .md t.t,_Ilt),' in ?vL E:>st.:x. S. Ivlboup, and othcro (cds). AlDSin (2nd ..::002). 202; R.H. i..;ray, M.J. \Vavver, and others, TrobabiHty HiF transmission pc~J act iu munogamous, ht:!erosexuaL lli\-'-1-discordant couples in H_t:~Ld. Uganda,' J,w~t:et, 357 (20tH), 1149-53. CU. PUchcr, lisiuo Chuan 'Hen, and nthers. 'Btlef but eilkient: acute HIV mfed!dn and the Sl~Xu.d transmis~iun of HlV.' ]ounwi u_f Diseases, J 89 ( 2U0-±), ] 7B ); li.L. Rapat:::.h_i, F. and 1.""\. Yorke. 'HIV e-pidemics by late disease stu);!:c transrnis~ion,' Tuwnal uf )8 (2005). .2-11. D. 1\lmgu.n, C. AlaLe. and others, 'Hl\ "1 inftYlion ln rural Albea: b therL" a dilltTr,jJll"e in nh'djotn time w .-\TDS and survivdl cumvared with lhnl in induslridli~cd counll"ie::.?' lllOS. j b (2()(;!). 601)
H.Al. 1\ndersun and R.I\L J\,tdy, lrdCcU,JUs diseuses 1~! lumuuts: dynamics a11d LOIJirol (Oxford, J 'J~J t L 31; S. Snnt <JIJJ C.j. Duncan. Biol,lJJY uf plugues: cvidena jl·om IListor iml vopulaliow, "~001).
A.l. Sawndogo. I.e
22. l2K. ,w_fvw de nwi 1Pans, 200 }), p
-,)
(2004.),
IvL Peerers, and mhcrs. 'Unpreu~l \HlV-·1) group M gt:.·nGtic
i\1. Pc.cicr:;. l' Toure-Kane. and J.N. Nk(.;IJ~asong, 'tle.nctk di\'ersity of Hf\' iu ~\trkls, LreCttment, vacci.tle dev~lopmenL and trhds,' /il!lS, 1 7 \200 3), 2 S-17 611. Vidal 8nd others. 'fiuprecedented · pp. ]()500~~1; R,nnbaul. UJ.. 1\ohertoon. and o11JtTS, and 1hc -u1igh1 iHV ", }\•'ature, '.fh) 1047; P. Hoqlie~. O.L HubL't'l::>on, "Phylogenetic HlV-l group 0 ·>tn1 ins: lligh viral diversity but T'v1like \iiroloay, 102 (1U02 }. 21)7, F.L ..\kCntchan. l ,' .:llDS, 1·1 (2000), supplement
2
1 :L
(pages l 0 181 Nzilu N:t..ilambJ. K,\'1. De Cock, and L)thcrs, 'TlK prt.'Valeuce oJ iniCction \\"lth human itllll1Ul!Oa ld pc:riud ill nHc!l Zaire.· NH]AJ, r)JB 27b: 1.B [ r:vcl -f: viru::; fuullcrs t~{ ll1e CDC (Ne\v 1999), lKS. C. f\cn1y. 'fmctge ,le 1'infec1iun 1-l VHI I cu t\frique LCIJiralc,' !_,'uciile Hd1;t: de l\-lt;dL'Lillt' ( l99i). 1 36: C. lJir;_jldo, E. Beth, aml S.K. I< vah-va.d, '[{ole of cytntnegalovn us in ~arconw,' in A.O. \Villiarns. G.T. O'Conur. f~ld otheL:> {ctb). Firu_,. associated cancers in A./ric!.-1 \Lyon, l9U-:f ), p. )~} 5. F.!l.N. SpnicLlc-n. 1\.(~. \Vhitlaker, and orhers. 'The acquired immune deikiellCY sywhun1e m1,! related c<>utplex.· SANIJ. 68 il%S). 141.
CdlTci1, 'Jh~ coming Jllague: p. )h/; Kapil~~ iVL Bib. Sidu en
L.
1 Y95J.
12; P.
162 Epidemic ill
6
7 6
9 I0 11
!..2
13
l·l
15
i6
l7
"1
8
19 20
21 22 2J 24
25
26
\\l~sLern
Equaturial il/lica (pages 10-18)
Piot, T.C. Quinn, and others, immunodeficiency syndrome in a betero2>cxual population in Zain.': Lailcet. J 68; lvicCormick and Fish(x-Iloch. Ld.~vel 4, p. 17 5; n. Fassln. "Lc domaine de h1 sante publique: pouvoir, polit.ique tl sidu au Congo.' Awwles ESC, 49 ( 1994), P. Aubry. G. K<::rnanfu, ar1d others, 'La tuberculosc {l l'heure dn S1DA en ;-\frique e:;nbsaimrienlle: experience d'uu pays d'Afrique centrale: !c Burundi. ll.ledecine Tropicale, 54 (1994), 68. J.J.l'vL Tmnfurn, O.j\.L/l(ihadL and others. neoj(JntUJtL\' :rif 1YUdecinc Tmpicalc, 52 (1992), 435·.. -6; J.-F. question o1 <:t<_:quin.:d immunodeficiency syndrome in the ] Y60s River Basin area in relation Lo crJ•pt,uccJccaJ meningitis,' Jmericun journal 1d w1d 1-iiwienc, :58 (1998). 273-·-b. T Quinn, ].T\t Mann, and others, ''\lDS itt
Epidemic in V\i;sten; Lquatorial ilfrica (pages l 0--l g)
1'7
~.
(1986), 957. Sonnet, J.-L. l\1ichaux. and others, 'Early AlDS
urlginating fri.)m Z<1irc and Burutllli (1962~1976),' Scarulillavianfowwd(!{TIIjectiousDisc:ases, ~~~ ll':JS'7), 5.1]~17; f.P. CuulauLL A.G. Saimot, and G. Charmo!., 'Lc syndrome d'immuno-depressiun aL:tjuisc de J'adr!lte.' tvlidedne Tropicale. 44 L1984), 10. Global AIDS :Nen:s, lYSl3 no. l. Sec also J. Coben, 'The rise and fall uf Projl~L SlD.r\,' Scia~<'C. 278 (1Y97), 1565-6. 1\-fcCormick and Fi::-.her-Hoch, Levd ":1.• p. l Y.-3. Pint and others, 'Acquit~ed imnm1wdeiiciency syndrome,' pp. 65--9; S
J6 3
l'lmmunodCill.'ience humaine (V!H l et VII l :.:) dans le sud~Cumeroun,' lvle.Llccilw Tropicalr., 48 3 91: \!N!\IDS. "1ccelerming aciion agaittS1: 1\ll!S .in (<3eueva, 2003), p. liJ: S, A.bl.k:Hy, and others. 'Review nf HIV sluJics iu Cameroun: next?' Bllllctia dt,' l'Ot:h'AC, 26, 4 (December 199 3), Kcmu1go, ·nmc, statu1. de la femm~ SiD-\: cas du vilii:ige de 1\.findourou dans l'Lst-Cumeroun,' ilwwies de l'IFOHV, 16, 1-2 \Del:embcr 1993), 'L1. Lc::;burdes, G. Baqnillon, and others, tuLerculose au cours de: l'infectiou par !t virus f'immwwddklence bumainc {V111) a Bangui,' i\.Udccinc 4H p 988), 2 t---5; j.L l.csbunles, }.B. l\-lcCnnnick, and 1Jthen;, 'A-'>pects cliniqnC:s du en ltCpubliL1_1w Centrafrkaine,' ibid .. -t5 9HS), 4-05--11; D. Tarantula anJ B. Sd1wartl8.uder, 'HIV/ !\lOS epidumics in sub-Saharan Jy-namism, diversity anJ Uiscrete dcdines?' ~liDS. 1 J rl 997L suppleSln- Jc: SBL\,' de l'mfection G. pan·1li 1cs prostitutes afrkaines,· i!nd., '£lspccts diniques,' p. 400; J.L Lcsbordes, B. Couhi!id, vin10 de i'immJmudbflcieHcc humaine I_VHI) 8 'La ftlbcrcukJ0C: uu de l'iufecUun par le \1 irus l'immunod~Jicicnce hurnalne (\llH) A Bulletin de l'OCEAC, 8S (April 19S9j, 74. CcJJtr;_Jificainc, 'Premiere conference nationale sur le sida b !'intention des leaders Demoa;;~tique des ~\:mmes Centrafricaines du 1 au H DCcembrc 19~)()' (dupiicatcdi. anuexe Sl, p 2; n. Hemy, C 1\.fBiagJ, ,-1nd others, 'Dynctmique ,c,ocivdc l'infcction a V!ti-1 en Alhqw.: CL·ntraie: de Bat.ouri (l:amcmun)A1tid~dlle -:1_3 -LSl--7; P.. Chambon, F. _!. Lou[:,, <Jnd othe--rs. 'EuquCte C.AJ:-'.C. ct [ J\lbaJmboum,' Bulletin de i'OLT,~C. 2?. ) (September 1 994:), i41: :Lairian disL~use,' B?d/, .lll i 19%1, SS.
_T,
:\h:.hda--Lizumu and 1\hvuna Elas, ·J\:loderni'tation and urban
)2
33
r
35
36 37
o/
Kiuc;hasa,' inC:. Gnm (cd ). :Zuife: the pulitical economy i.!J' York, p. ! ! 2 · j. i'v1a.::GatTc~y, Eutrepreueurs ~.md che srruoole JiJr ((, 1987), p. 1_ 15: B.t~. 'AlDS anion-research Zaire.· 37 (199.:5), 1~±01. T. elL lfenlt and L.L IAtzo!ete Lola Nbtkala, La pauv1de urbaitw ell ."1/J-i<JUe suh::itdtaliame: Je cas dt: Kiushas1.1 () parts, :\ utwerp. ] 99 7). part 3, p. 90: j.S. La Fontaine, ··nw free wmneH ol' Kinshdsa: pro:;,titutiun in a cily in Zaire: i11 f. Davis (ed.). Cho-ice and chauge {London, 1074), ch. 6 A. BuvC, I\I Carat_q_, and othl~rs. ·vuriaLiuns in HIV between nrbun an::as in sub-Saharan .'\frlca: ,Ju \Vt~ undL:rstand the1n?' ;UJJS, ~ 995}. supplement. ::;105; Hemy, epidf~miologique: 28 7'--8; 1\rengistu 1\lebret., L Klwdakevich, and olhcrs, 'Sexual and ~omc of female sex \vorkers in tht: city L)f /\ddis Ababa,' LJHD, 4 (J ')~()) ll6. l'd. (urue\, T~n Afrit:jtW: une malaJie cult.uelle,' in L. Hirsch (ed.), I.e stdu: rlltlWllr::> et .Jldts 19B7), pp. 57-8 B;·lfter, Baangi ]>.:fatcla, and odwr.s, inddcncc iu young women nH:u;ked by sLdJk overall seroprevalence \·Vumen in Kin~hasa, Zaire-,' AJDS, k (199-:l-L 816: L Corey,_-\. \Vcdd, others, 'The of herpes simplex \/irns-2 on HIV-1 Hl.ld Jransmi~sion.' Jounwll~[ /HDS, 35 (2001-), 43S-4-5; B. AuvcrL A. BuvC, and 'Ecological anJ inrlividuul leve-l analysis of ri::.k factors for IUV i.nfectiou in four urbun populations in sub-Saharan Afrka \-vith diiTerent Jevds of HlV infectiu11,' AiDS, 15 (2001), supplement 4, d9--2.l. G. Pkh:L S. T.~ Coeur, and utbtrs, ·l~onLribntiont:~ of A10S to tlte g~ucral morLnlily in cenlral /\lrk'i:L evidence fr01n a UN,\lDS, ';\IDS epidemic 28 Novl~mber .2004).
AJ,\. February l '!98 !VL [\lakuvva, S of a
study in Bntzz
-J
' !liDS. 1.? ( l
and uthers, 'HfV prevalence and :-.train diversity in Gabon: the 4 {1(JOU L 12 7 5; l.iNAIDS, Ji.i.'pori O!t U1J global /il!JS e{Jidemic 1()()4
!9!_--2. T. Harnett auJ A. \:\'hi1esiJe. AJUS it the twenty-firsL CCIJLuru: dij:ea::-;e and !JlobalizatioJJ sluke. 2002). fl. 1 n. (C~ell:_:va,
I_
iBa~ing
r
164 Epidemic in Western I;quaiori•tl Africil (pages l 0-l t;) 39
40
C, tVIulanga-1\..abcya. Nzib Nlilambi, and others. 'EviJenc.: of ..Jtal'ilc llf"V scroprevnknce in selected populatinus in tl1~ Democratic Republic of the Congo,' AIDS. 1 ( 19Y8L 901:-L F.\V. EvvaJcL El'olution i11jeaious diseasl! (Oxford, ]99-1). pp. J-1-1·--2; 1\.luhwga-KtlOeya and
HJV·-l incidence,' pp. l:; 1 1, :J i 5; Tqrantula ;-mJ Schvvartlaudc•r,
-1!
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]"1 DeL·cmber llHJ.:U. l'vL Peelers, awl other::., ;I fnprecedLnted degree of hnman immunuddicieocy dr us. 1 Hil\'-l) gn1up :P.f genetic diversity in the Democratic Republic of suggest~ rbat f-HV-1 pandemic originalc'd in ccn1nd :\frica,' }ollrnal t:r Vimloyy, 74 1050S; N. Vidal, G. J\1uianga~Kabeya, nne! others, 'ldentifkalion uf a compkx eHv subtype E HI\' Ly pl~ 1 virus from the DenwLTcttic Republic of ' /iRHR, 16 (2000), 2059. F.E. illcCutchan. 'Onuerstauding the genetic uf tl!V-1: _-liDS. lJ (lllOO). supple· meut 3, s) ); i" .i\ Konings. Ping Zhong, and othe-rs, 'Protease mutatiuns in lHV~ l non~B strains infc:cting v1liagers of Camt:ioun,' .1RHn, 20 12004), 106. F.E. Wlcl:ukhan, ].~L Saukale, aud 'HIV 1 circulating recombinarH lorm fron1 \Vesl ! 1./i·ica combines A, £<'. and may share anceslurs \•vHh and Z131,' ARlTR, 20 {200·1), 11. l:\~cters, C. Tdnrc-Kane, and uLhcrs. 'G.::netic dh:ersity {Jf I11V ln Africa: on diagnosb, rrcatment, vaccine development and triaL;,' AID~'. 17 c:;oo 3), Y. Takchisu, and o1hers. 'Genetic or IllV L.ype 1 hascd un !he sequences iu Rcpt1blic uf 'A.RHR, 18 B2 3. 'l.iudcrstanding,' p. s'L!., and mhGrs, Tlnprecedcnted tlegn.>.e,' pp. lU'::!.'Jtl. 105()1. \/idal ai1d t..Hht'lS, 'lTnprecedcntcd degree.' 1050U-1. [\ Lilt:f .SllJTey fonn,.J subtype:: r to be uncommon in the southern tcrwn of Kayvku b:1La, Niu-tise Ndembi. and ~>then. 'Gend!c of HIV l in Lik3si. southeust of 1 he Dcmocratk Republic uf Congo,' A RHR, 20 13 52-
11
\,Vt~itiny to hapJJell. fllf'/JIJJS in .)'ouih (acces~ed
UdST}, de
](,
]7
4 The Drive to the East (pages 19 - 3 R.C~. Dtn1ming. and uOll-:rs. ',.-\. molecular cpidemiu!ogic Sllrvc:y of JHV In LliD8, 12 (19Y8). 52~1. T Jonckbccr, I. Dab. anJ others, 'Cit1::,vr of HTLV Ill, 'LA\/ infection in an ~-\.frican fu1Hily,' Lancet. 19S S/i. 400 I. F. H,;nper, The river: a ioumelJ back to the scaucc of WF wd AIDS lreprinleJ, London, 2000), p. 91, ntentions another possible cut~e. l\'1. CaraCl, '\Vumcn. AIDS, and STDs in ::->ub-Sahcmm Alhca: the impan d nwrriage cllange,· in C. Cabrera, D. Pitt, and P. (eds), AlDS and the problems, chalienws awl opportu11ities (Gaborone, 1996), Van de Pcrrc D. and l-)tlicrs, 'Acquired 'LanccL, 1984/ii, 62. immunodetlcie.ncy syndrome iu ]. i\1orvan, B. Cartenon. and others. sCr{H~pldemiologiquc sur le::. infections U UIV BurunJi entre l9RO et 1981.' de ln Socifti de Pat!wlogie ExoUque, ?12 (1 SJ89L 130· 3; R. Laroche, i-"loch, anJ others. 'Principaux aspect.::; Ju syndrome d'imnmnudtpressi\Jil acquise de radultc au Bunnhli,' fvledecme Ttt)picale. ,jf) (1988) J59, Hd.
i\LA. Hayiicld. L~ganlb,'
...2
4
h
7
B . .Stundaert. P. and utbers. 'Acquirc:d immuuoddlciency .syndrome and human immunodeficiency virus infection in Bujumbura, Burundi,' TRSTAIH, 82 (l988r 902 3; i\1. de Loeu:den, Cormaissmuxs et attitwlcs }f1re au FITJ/sida (Parb, p. 3 5. B. Staudaert, F. Nil anJ orh~r:-.. ·rh.: assodalion of anJ Hl V infection in Burundi,' ilRllR, 5 247; C. Charmo! anJ R. Laruche, 'L app~Jrition et l'~vo1ution de !'t:pid2mie par le ·virus de l"immunodeficiencc.:: hnmaiue en Afrh;ne suh Saharicnnc.' Ivledt'dne Tropicaie, 54 \ 199·1 ), 1.0~; d~ Loen:deu, Comwissances. p. 3 .5. C. Bizirr:ungu a1HI others, 'Nation"vtd~ coutmunity-based seJ·ological survey uf IHV·l and otl1er human retrovirus infections in a centr
23
l bS
(Bra:t:zaville. lOUO); A. van dt;r Slraku, R. communication, sexual coerclon and HI\7 risk reduction ln Kigali,
c~ud
Rwanda,'
l5
(pages 10 -3
bcHVl;L'll Jbc Central I\1'rican aud Cltinea-Hb::>ii.U. other~. 'Female prostitutes: P. \/au de Perre, ~.1. Carael, l1nman T-ccll lylllphotnJpic virus type' HL' Lance/, othcn;, AIDS, p. 67; P F. Bigirl nmnLL <Jrj(l nthcrs, actuels d<1 syndrome Noiu;, .11 (1 ~)(j()) l'adultc D BllJLitnhLu-a,' l\1tidecille crJmmUliUJefkitUCf: CJC(jUiSe 569. the: L·l!allcnye tJf lliV w d<.:\'dopnuut (LonddH, 1992), p. P<-wos institute. The hidden cost ' Calw:rs d'Htude.s "lfrinlirws, 17 ( i :J 7 7), ll B. in B. Hirsch Le sidu: rwneuts d }iuts King,
G.il.li.. H.ugalt~nw, Adult murtulit.'i as cntiriement jiulure: l11VS ;md Liir: nisi;:, d rural liveliiluods iu fl Tanzatlltm villag.:: 1PllD thesis, Jnstituk of Social StuJics, The Hague. J99Y: published m Maastrid1l). pp. 73 ·1. ShJtlL:burner aud others, 'Simulation,' p. 22 'l. D. St;nvadda. T\1.J. H'uwer, and utha8, 'HJV l isk fuctor:> in lhrl't: gn,g;<>pwc ~tnHH ,)f rurctl IC1k.ti district,' /iUJ.)', b Slh); F. Nulngoda, H..H. Gray. and 'Burdl~ll of infection of rural lwusehulds in Rakai, lJg•H1du,' 'U1JS t:are, 1 h (21HH ), l 1.2: RiPer. p. :t:8. J.\t\1 CarswdJ, ·ntV infeci1un in healLhy persons iu Cganda.' .rliDS, i (1Y8?)
Hierhub~er, H.R. Grr.tbdm,
and olhcrs. 'H!V type:
intermixed in Sudan,' £i1H1R, J t:> (2002). 1163--L
J
2.2S; ,f\1. strulu:::. ihm1 East u.nd \Vest \Idea are
166 27
ltl
2Y 30
31 32
-33
3~1
)) J6 3/
38
3:7 -i-U
,:!-1
42
43 44
'fhe LJrive to Lhe East (pages 19-3:? I Rivrr, pp. 43-5; D. Low-Beer, 'TlH:- diffusion iA. AIDS in Eosl Albee!: t]nm emergence to PhD thesis, University of Cambridge. 1997, 137, 161; G.C. ILmJ and j. Vincent. 'AIDS in Uganda: the lir;:;t decade: in G.C. Bond, j and others (ed~J, AIDS in A{rica ami the Caribbean (Boulder, ] 997), p. ~"::!:. j.I.V. Carswell, {_}_ Lloyd, and J. Howells, 'Prevalence uf Hl\' -1 in East .\Jl1um luny Jrivcrs,' 'ilDS, ) (l ~89), 75~-
D. Ndagij'lmana and olhers, 'St Francis Hospital, Mmulere, 1 '!89- l 'i'll.' dupiicateJ, !IMOH libra(,Y. Hoo~er, River. 37-g; D. ServvaJda and J_\'\7 • CarswdL 'GenerahseJ Kaposi's sarcoma iu tlgi:Jlu1a,' in pruceedit1gs uf rhe ilssociaLI01llJf Suryeons 1.4 Hast ,_4j)·i'"'·a, B (19b5), 55; .N. Sewaukambo, R.D. Afugerwa, and others, 'Enteropathic .'\lDS in tJgunda: an endoscopic, woccn•·'~'L"' and microbiological study' ilUJS, l I l Y87). 9. i11 Nc\11 Vision, 4 Septembt;r 19~ 3. Carswell, 'HlV infection,' p. 225; H..L. Stoneburner anJ D. Lm~v-Beer, 'Popula1ion-lev.._~1 HI\' decline aud behavioural risk avoidance in Uganda.' Science, 304 (200.:J), 717. P. Nsubuga, R. :tvlugerwa, and others. 'The association of genital ulcer disease dnd HI\l infection at u dcrmatology-STD dinic in Uganda,' fowual of JlDS. 3 (1990), 1005; C.f. Bakwcsegha, Prqfllcs oj urban a msc studu from Uganda (Nairobi, 1982;. S. t·ra!Iman and V. Pons, have ail the young wen gone? EvidGncc and explanatiou;:. of changiug agC··.sex ratios in Ki:impah.i.' Africu, 71 (:2001), 113 2',7 ; A. Lmson, ·soci;Jl cunlext of human immunoddiciency virus transmission io Africa.' Re\'i~w 4 InJ~ctious Diseases, 11 I 1989), 71 Y; l1ganda: Minis!ry of 1:-kal!il, Uganda: .md fw.dLh 19881198~: repurt iEntebbe, 1990). pp. 10--J I; OJ_ ~lornnv, cuhurcs vulnerability to infection Baganda youth in 1\lt;igi, Ugand.J · PhD thesis, fohns Hopkins University, 2000, pp. 20 142, l2J. 189. Serwadda and othcrs,'Shm di~case,' pp. 849 52: j.\V. CarsvvdL K. l'dugenva. anJ otber.s. 'AlDS in Uganda: special report by t11c Clinked Committee on r\JDS,' !Iculth Tnfuruwtion Quarterly (Entcbbe), 2, 1 (February -19S6). 11-20. Stoneburner ancl Low-Beer, 'Populdtion-level H!V dedme,' p. 7l5; c1.U. Scplelllber l'I'IJ, P- 5. Hooper, Ril'er, p. 39; G. llaukcncs, J. Shao, und others, 'The Al.DS ephkmk ill 'L:u.iZduia,· Scandinavian }oun;al of Iufecr.hHts Disc;tlses, 2-'J. (] 992), 701; E.J.N. U(as::-.1.1, I'.}. i\thalu. anJ others, 'Prevalence of l HV infection among J!regnanl H'lJrncn in Dar es Salaam, Tamania 1\iiedicaljoLmwl, 5, 2 (September l99U), 15; H.S. Kat<:Jpa, 'Caretakers of AIDS patients in rural Tanzania,' liSA, J 5 (2004 }. 673. Hooper, Rwer, 1!. -iS: Kaijage. 'AlUS control,' 279-J()(); F. fdhah1, {J. Hredbctg·HLi~ll:n, and others 'Prevalence of HI\! infection in suhjectt; and groups of patients in Tam~ania,' L1IDS', l (19Bf'), 217-19; A.K. T'ibaijuka, AIDS and economic welfare in agriculture: case studies from Kagetbiro vilL:1ge, Kagera 'Tanzania,' 2 5 ( 19lJ7), 964: F.S. Mhalu. 'AIDS t:.nd infeclions \Vith human imrnurw,JeiiciL·n >.':rus in Tanzania,' l<mzur1ia Meclica/ )ounwl, 4, l Unne i %9), L S.H. Kapiga, j.F. Shan, and others, 'Risk factors fur fHV infecUun among womc:n in Dar cs Salaam, Tanzania,' journal oj' :11DS, 7 (l9Y4). 301-Y. P.B. Hiza. 'International co-operation in the narlonal AIDS cuntroi in 1\.F. Fleming. 1\1. Carballo. and others (eds). The aloflul itllpact AfDS lNelv p 234; R.D. Swa.i, 'Epideminlogy of AIDS in Tanzania,' in T.Z.j. G.h.. 1.\'l'ihula, anJ ulber::i {eds), Beiwviouml and epidenuvlogical aspects of AIDS research in Ta11zania (Stockboltn. 1992), p. 14. B. Jordo:-m··ffardcr, Y.A. Koshuma, ana olhtr:-., decade of comprehensive AIDS control in http:// tVWVF .gtz.de/aids idm:n1lOdd/ heft __ l.pdf Bokye Kim, and others, 'High proportion of unrelated the Mbeya region of suutlnvtst TanzanliJ,' il!DS. 1 1 (.200 l ), P.\V. Setel, A plague of paradoxes: lilVS, culture, and demouraphfl in northern 1lmzcmiu (Chicago, 1999). pp. 3, 84, 148, 210; K.S. Mnyika, K.-L and others, 'Prevalence of ll!V-1 iufcction in urban, semi-urban and rural areas in region, Tanzania.' /HDS. S tl99·!), 1479. 13_ H.cnjifo, i'. Gilbert. and other1;, 'Preferential in-utero lransntis.siun dl" IllV- I s:J.btypc C as compared to il!V-1 subtype A or IJ,' AIDS. 18 (2004), 1629 ll. Hltekly Review (Nnirobi), 24 !viarch 1989; P. Piot F.A. Plummer. and uthcrs, 'Hcrru;,pective
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e[JiJelltiology ul Afl)S virus iurecUon In N~Jirobi populations,' joumal l:{ lnjCctious /)i::,cases, 155 ( 1':>:57). llOo- i2; I.N. Simonsen, F.!\ Plullnner, and otbcr~. 'lii\' i11f~ctiou among lmver socioeconomic stratu prostitutes in Nairobi,' AlOS, ·± (19~0)_ 139. PitH Ltlhi others. 'RclrospeC!ivc epidemiology,' ]lOti; D.\'V. Lamcron. L j. IYCu~ta, and othL:t"S. 'Fcmak: to male transmission of human inimwwdcticiency virm; type l: rbk factors for scrOCt)llvcr~ion in rnen,' l.aun:t, 1l)("j9/ii, -10--l. A. O'Connor, The !llrican (London, 1983 ). ') ~i.H. Dawson, ';\JDS in Africa: hishH"ical Hockv11dl .:liDS in :lfi ica: lhe S'vcial ami policy impacr roots.· in N. Miller and {Le\viston, J 9t;H), h2. j.K. Krebs, D. a.nd others, '/\JOS virus: infection in NairuLi prostitutes: spread df I he epidemic lo East \!rica,' NE]A1, J H i1 ~86), 4 I ·l l 5; F.A. Plummer, E.N. and S. 1\Joscs. "The Purnwani experience: evohniou of a Jn disease control, in Nctv,,ork uf AlDS Hc~sei-ln'llers of Eastern und Southern Focusiuy iuterventions tlllwny vuloerahle ~Jroilp:. ji>r i i dime e;rperiem:cs ji·vlll wster11 and ::.outhern (Nairobi, 19~H ), p. 75; E. Huoyt~r . .)'lim: a own story qj L4flJS in E'list A{ril'a J 990). p. )1 0. Cameron and 'Female to male transmission,' p, 403; S. Muses, E. i'dui t l ~J9:_l), 1 65--:l: lJNAHJS, Co/lsultu.twn on STD iiLlerFt:ntivnsjin· preventing HlV L()()(J). p. 32: E. Pisani. (;.P. Garnett. and other~. '1-ku:k lo ba::ac:. in HJV prevention: dfi exposure,' B~\tlf, :L?.O (2003), 1385. ii~AlDS. Cm1.'lUftaUvuoniilFmterventiuus, p. 32; O.A. 1\nLala, N.J.O. Nagelkerke, and others, '1\apid progreti&ion to Jisease in African sex wod•. crs 1Nitlt human immuHoddiciency virus 1 infect!Uu,' jlJllrtw.lofli~FecLiousDiseases, 171 (1995), 68h-9. and Moses, 'Tbc Pumwani experience.· and F.A. Piummer and E.N NgugL targeted interventions.' 111 Network of iUDS Researchers, Focusinu inlerventions, pp. 77 t<:, 12. AJ.4 JY'J2, IJid. Baelt"n, B.:\. l:\ichardsvn, and uthcrs. 'Trends in HlV-1 inclJencc prostitutes in ' Journal of /lilA), 2-± (1000), 15Y; M.P. Htnvlc_u, R.D.j. .\felb, aud othcrt>. 'Opportunity prevention of fHV and .sexuully tran.smitied lufeclions in Kt:uy<Jn ret,ults uf a populaLiou-ba:;;ed survey,' ibid .. i 1 U002). 519. T.RL CJd. Balluzar, and olhcrs, ldlJS ill backHmwul, proiectious, impact a/Ui intt:r\'t:niions {Jrd edu, Nairobi. 1996), p. 7; IVI. \Nall\er, anJ others, 'The inJpact of l-HV 1,UDS dn land rights: L:asc studies (2004), pp. t:, ;2. 3. hnp:, \vwvv.fao.org/cd/dim pe3/ laccessed 28 December 100:!); R K. i'-.y~~ga, D.N. Kimani. and others. u review of resecnch and i"uco (20lHI, p 1 J., lH.pdf (accessed 21 20(J5,; lJN"UIJS, 2004 (Gencv", 20\H), 24, I'Jl-2. Daily Nariutl 28 July Okcyo, Baltazar, and oth~rs, .HDS in C. BbhojJ-·Sambrthlk, 'Lllhmr constraints cmJ the impact of HlV/A!DS on in Bundu and Bnc;ia dis!rkts, western Kenya' t)O(r)). pp. 6, iv, hUp://wvV\'\'Jao.oig/ag/AL;s; (accessed 28 December 20041. here?" Negotiations about relatedness and time in 1he vHiag~._::,' PhD thec>is. Unlvcr:>U_y of Cambridge, 2CHH, p. 16: others. 'Stable antenatal HIV·1 sen}prevalencc ~:vHh mobility markell scroprevalence variatiun amoug sentiuel sites Nair.Jbi, Kenya,' AIDS, 1 '3 \ 1999}. 585. R.C. Bailey, R. 1\lluga, and others, "The of nwlc.- cirdm1cision to reduce HIV infcctitHU in Nyanza province, h.enya,' AlDS 14 (2002), 2tL J.E. Voik and C. Koopman. 'Factors associated vvith condom U!:>e in Keu.va.' AIDS BdL!catioll nnd Prcvenlioll. 1 ::i C200l), SO.!.; BuvE-, M. Cmnd, and oihers, 'Ivlulticentre .stuJy on fo,:lors deEcrminiug Jlllerences in rate of uf ! UV in sub-Saharan Africa: method::; alld prevalence of UJV iufcction,' AIVS. 1 ( 20(1 1), suyplcmL:ut 4. sll. Cds::.leL. '''Are 1vc ::-.tiH here:'',' ch::-: 1 aml 5; Sumdanl(Nairobi), 15 December lOCH_: HNAIDS. Rt'pOJt on glokll epidemic, ju!lc 2000 (Geneva, 2000), p. 5?5. lJNDP, .Bou.wauu iwnum devdopnv.·nt. fCJIVrt 2000 (Caborone, 2U00J. p. 27; BuvB and uthcrs, 'Multkenlre srudy,' p. ~s. fiN.'\JDS. tlll the olobul ~-HDS 2001-. pp. 19l-·2. Alrua'!, V.V. lukashov, others, 'Timing IJf the HlV·l subtype C epidemic in Elhidpw bused nn e~1rly virus ;:.trains and Gubsequent virus diver.siikation,' i1lDS, 15 {2U(Jj), J 555-·6 i; A. Fontanel and THahun \V/Mkhad, 'TLe Elhio-Ndllcriands A1DS Research
!6S 62
64
65
The Drive to rhe East (pages l 9-3 2)
ri.sk
66
69 70
72
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;:-1nd rnajor iiudings Hll.;r of act.ivities.· Elhio!;iml 37 t~upplement1.p 12. Lake1ch Dirasse, socio-economk position •If woHltll in Addis AliaLu: the case llf' pr;)~-;tltution,' PhD thesis. Bo;c~ton TJniversity, -i 978, p. 50; C. Clapham. Tran~formution aud L·ominuitlf in Ethiopia {Cambridge. 1 Ybk). p, J ·10; i'-Jiengh;tu l\:khrct, L Khoc1akevich. au;l others, behaviours a11d some social r~atures of female sex \·vorkers ill. ihe city of Addis i\baha.' E]fm .f (1990), l.H· 5. tradition and imwvuLion in dllture J 96S), p. 100; and lhe meaning L)f JtiDS in Ab~!ha, · PhD th;::s!s, 20lJl, pp. 55, 110, !59, 199; 'HlV/AlDS in Ethiopia' ( accesseJ 8 February dSSOcidted \Vith fHV--J among sex vvurkers 94; Evkngi.siu t.IcbreL, L. "''uu"""v'c", and others, 'Prcgnanc:y,/STD protective mco:m~ Ell V female sex 'l.vor-1\.~rs in Ethiopia,' T!f!ID. ·1 (1990), 139 '12. 1-J.E. Duncan, (;_ Tihau.x, and others, '.-'-\_ socioeconomic, chuica1 and >nun'~"'"' African city of and ,,,Jomen still married lo their lirsr husband,' 323, 32R; \Voubalem, 'HIV/::i:.JDS in Et.hiopi<:L knowledge, practice. and attitudes. PhD thesis, Brmvn Onivc.fsity . ..?003, 10: H. Kloos and Damien Hrtilc I'vfariam, 'Hf\-',..:AlDS in Ethiopia: au overview.' Nortl!!:ast NS, (:2000). 17. Center for International _HeaHh Information. n.d.). 43: rviengistu J\1lehret, L Klwdakevich,
among female sex workers in Addis Ababa,'
'AIDS in EthlopJ:,' countryreports/ETH Mengistu lvlchret, L.
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l L 15 July and others. 'lHV--infcctidn and 1chlied .fisk factors among
female sex vvorkers in urban t'Jrea::;
2002).
or Ethiopla,'
fl[UD. Lj (19'J0). 103--.5; Solomon Gebrt:.
'Sexual behaviour and knm.vledgc of AIDS and other a snr>.iey of senior high S\ honl students,' 1::/HD, •1 (19'J0i. 12l. Federal Ivfinistry J-leahh, '/dDS in Ethiopia' (Slh edu. lUU-1), pp. :J. 25, ~"'''"'IV0UlDIUOLlL!JUl (accessed '1 February 2005). Fontanet, Tsehaynesh and ot.h.:rs, ':\ge- and ~.;ex-specific UlV-1 pr;~ov~dence in the urban community setting of Addis Ababa, Ethiopia.' AIDS. 12 (l99b). 320: Fontanet and TiL.:1bun \V/Michaei. 'Elhiu--NetherlanJs Pn}ject.' p_ 13; 'Update on HlV/_,_'-\IDS: prevalence of HIV inii:'ction lNomen attending antenatal care clinic.-> by centre. Addis Ababa, Ethiopi<J. ' Ethiopim1 Aledicnl 41. i2003), sup!Jlemerrt l, p. 89; Deregc Kebde. :Mathias /\kHlu, and E. Sanders, IHV epid,~mk and tht' state uf its surveillance in Ethiopia.' ibid., 38 (2GOOL '287. 'AIDS in Ethiopia' pp. \', 6, 9. 26: lVorld Bank, lVin"ld development report (Nen.: York, 2'76; lVuubalem, 'UJV/AIDS,' p. ~)_);Daily Ala11ilur 1_,-\ddis Ababa), 21 December 2004. (accessed 29 December 2U04)" Quoted in l. epidemic in South Omo Zone, southern Ethiopia,' African Studie~. 52. Ethiopia: National ATDS Control Programme. 'Second mcdiHm term phm J 992--lY96 and workplan and fnr ] 992-1993,' duplicated, Shabbir fsmail, and othen:;; 'Kr1mvledg,e, in a rural comrnunHy, Erhiopilln factors pertaining to 3--·4: L Shahbir and C.P. Larson. 'Urban to rural routes cf HTV infection f(mrnal of Tropical 1\ledicine and Hygiene, 98 (1995), 338--42; Gegu Degu and pr;;;_clH\' of condom in preventing }HV//-\IDS infection among comn1ercial sex \.Vorkers in three small tm.vns of northwestern Elhiopla,' F.]UTJ. 16 (2002), 27'7-80. C. 'The chaHenge oi' l.he HIV/AIDS epidemic in rural Ethiupiu: ;;wening the [\JDS··impuctcd communities: from f1eldwork in Kc:r.sa \Voreda, Eastern Bararghe :lone, Oromiya O.J0402dl_cn.doc (accessed 6 ScltJteml,er
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HlV cpiJemic in dbtrkt Malavvi,' AUJS, 15 (2001 ), -~025---9; C.P. GIV!ili. anJ evolution of the human immunodeficienL:y virus ll)idcmic l11 tl.L-ti Maluwi,' journal 76 (2002), 12800-9, and HIV type 1 group Jv1 sequences in distckt, rvlaluwi in the ,iRHI<. l ~ (201!3), 441-5; A.C. Cram pin, S. HlV-pusitive anll HlV-negative individuals in Sll. S, Osmanuv, C. PattiJu, and oiht:.n~. 'Estimated global distribution spre<:ld or HP/ -I ~en elk 6UbL_'ypes in the year 2000,' juunwll-~r AIDS', 29 (1002), 18. P. Kazembe, and dthers, 'High levels of human immunodclkiency \irus t.ype J m und semen nf seropositive men in sub-Salwnn1 Africa,' fourllal r~/' Infectious Dis east;::;, 1 77 (!9%). 1712 6 R. Shcr, .S ..-hdunes. unJ other:1, 'Seroepidemiolugy llf huma.n immunodeficiency viru::; iu i\Jhca J'rom _1970 tL) 19'7-i, NE]i\l, 3_l7 4-SO-l; Malawi; National AIDS Contrd Progrs uwdiu and 1HlJS i11 Botsrvww: what tlte suy and Lhrir i111p1imliuns ( Caboroue, J99 3 ), pp. 1 3-- J 4, Titn;s 22 1.\Jarch 1 986; UhlHHba-fas\.va. !\.:'lass 111edia. pp. 20, 2 '); S. Tluu, 'Empuwerlng older Vi/Olllen in AIDS prevention: the ..::ase of Bui.srvana,' Southern /l.f/-icun GenJntoloou. 5, 2 (1996), 2?. T.E C.!\. Dallabett.a, and other:-,. ''!.'rends of HlV-l and ~exually transmitted diseases and women in urhan rvJalawi,' ATOS, 12 ( 1 llJY--200: 1996; \Vorld devdopmelll report 1991. York. p. 27ti. , N.C. and others.' Estimating the global of 1-_IIV/AlDS,' Luucct, ~63 R. 1\inbanga Musondu, and others, 'HIV infccticm flntcndtil! \Vomcn in Zambia, 19YO- l9Y3,' L1IOS, 10 (J 556; \-'Vorkl Baok, dt:vf'iopntcltl rep:Jrt 199.1. p. 278; Lumhia: Zwnbia: backyrowui, itnpucts and iwr:rventions {LuscJ!,;,_a, 1 ! 2. i.Vor,~ing docww:n£ fLw Nationul AlDS stmtcuic_fiwnt:\vorkjor u national respun::;e io 1 illJS (2000 -2004) (Harare. 1999), p. 4; !\,LT. Bassett, V\l.G. 1\·tcFarhmd, and others, 'Risk !'actors fi.Jr Hl V infection (:Jt enrollm~nt in em urban male factory cohort in Harare, ZirnLabwe,' jouuwl (~( illVS. 13 (1996), 187; \Vorld Bank, l-\0rld d~vrlopwent report 19lJl, p. 278 Zimhainve, \Vur!dng docw;Jent, p. 5; /li.L1, April 2001,
,1,4A, june 2002. p. 4. S. Grq~son, R.I'vl. Anderson, and otbers, 'Heceut upturn in morlaliiy in rural Zimbabwe: evidence for ftn early dcnwgraphic impaci of HlV-·1 infection?' .1105.', ll (19Y7), 1273; P.LN. Siku0<11Ja, D. Hlallangana, and I. I\oloyu, 'Quantifying morbidity in pregnant vvomen ln a rural
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9 3. Hotsvvana, BoLs\wma JIIF and AIDS: sccu11d m(·dium term 1 'J:J7 --100.2 (Cabmllue. -] ~J\I'l), p. B; Tli'\DP, Bolswana hwnan devdopment 20()0 200t1). l lJ. l'. BarnEtt anJ :\. \ VhitesiJe. in Lhe tu:emy-tlr:,l Ct:l!t11ry: and .i-Jlobalizcatou {Basing.stokc. 20()2). 120. .-L1'L April 2000; i'h1Unnul A!IX) Coordinuliug ;-\gLncy, ·smtus of the .2U02 to the lil\"Ui-\SS declnrafion of commitment on HlViAlDS,' Matl·h 1003., (accessed 21 November 2001). on tlw sucio·-economic auJ culll1rd LidlX:-> intlucnciug !he tran.smissi011 f,fl11V in BotS\N~tna,' .)'S'A,f, -±~ (l~J96), i1:.25 A.iL1, 1V1arch 1 Sl92: T Comvbdl ond i\'L Kelly. '\Vomcu and AIDS ltJ. Lambia: n jojo, quutcd ill :\1ail and Gthtrdian (johannesburg}, S August 2003. S.K. Hira, B.1vL NkoH/iiilC, and otl1ers, 'bpiJemioiogy of human immunucit-ticiency \-Irus itJ fw11ilies in Lusaku, Zambia,' ]our11al of AIDS. 3 S:.f; U1 egsnn anJ otlit-r~, 'Hecc~nt uptncn,' 1279: S. Gregson, PJC 1.'Jason. qud ·A rurc.I HH' epidemic iu Zlrubabwc'? FinJing a populatiun-b<Jscd sutTey,' l]S"\. I 2 (2litl I). I') I -J. Malawi, K!WIV!cdye. aUitudt!.~ and practices iultcal1/1 SlltFC~f 1906 li::':omba. 1997), Pl-'i- .SJ~-3; Gregson anJ others, 'Heccnt upturn,' p. 12 'I 3. Bois1varHJ., BLJtswmlti :HDS illlpact sun'e!f 1001 {Ga.boruth:.~. 2002}. p. 55; D. ~kd.;ers <md G. i\l:med. 'Contemporary paUt~rns of adole:::ccnt scxualiiy in ttrban Botswano.' Hiosocial Sdcnce. 3..2 (2000). 468, 4-7 5; D. i\Jeei~ers. G. Ahmed. and J\tT. 'lJnJcrstanJing constnlints tu adolesl cnt condom the case m· nrban l3utsvvan
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l:N_\ll"!.:), 'AlfJS epidernic ~ 23. hx ;j hwer estimate (-1.68 million) T Kd1lr: and 0. 'EpiJeruiulugic<:.tl i:.md demographic Hl\·'/AlDS prujeclions: SoutL ,\!'dca,' A l])S Res earL" II l Crnhamt:.lnwn ), _?. ( 200 3), S. .\. !Jove, K. 'Tile spread and eiTetl of IHV 1 infcl"lion in sub-Saharan Afnca,' Lancet, 359 2UlJ. RG. \Venigcr. Khunchit Llmpakurnjanarat. aud others, ·nnL epidemiology of l-HV lnfeclion an1l r\liJS in TltaHand, AiDS, 5 ( 19Y1 ), suyplcmeut 1, ;,71· BS. Epicit'lltiuloaicai CmwJwnts (Pretoria}, January 1983, S; The Star, 8 H. Sb~:r, 'HfV lnfcction in South Africa. 1 a rcvieH:,' S.ilt\1}, 76 Je A1iranda, lc Sher. and Jthcrs, 'Lack of evidence of Jll\" infediou in ulm::;ers at present,' S/iA'l/, :70 (1iJ86), '7/b; ·\Vurkillg in the cnnununi!y,' {'t'ilical 21 (,\pril 1 ~lbOJ. 5·4 9; Epidenlioluf]ioll Cotllllltnts. November l, p. 256: B.D. Schou b. A.N. Smith, LlllJ LttiCfS, ·consiJcrathms Ull the further cxphn~ion of the rnv epidemic in Suulh .:\frka ] 99Ci. S;L\1}. 77 11 'J'JlJ), 614. f. van lltlrmclcn, R. \,\'oud. and otlwn;, 'An assnc!qlion bd\veen I-HV-l ~ub!ypes and nH;dc uf traibtllis::,ion in T(nA·n, South A.frica,' iiiDS, 1l {1 ~-JY7) g l-7; 0. Shisrtml, L. Simbayi, and ot h~rs, /\:d~un stwliJ (~I HIT// lilUS: Soutft .1/i'itwr 1111tio11al f UV pi ~vnlt'nce. be/wviuUIIlf ri~ks awl IW\VS llli!dia: /wuscfwld SllrVelJ _?0U2: t:Xt';CUUVt; SWHflltll'lJ (Capt' TOW II. 1.()(}2 ), p. b. N. O'Farrell, 'South African l\.lDS,' S..:l}dJ, 7 -~ (_1 01'57), 416; H. :-;her, 'AJDS in johanu~sburg,' .\'A,\1}. 68 ( i 985). l S.F. E. D. ~dwub. and uihers, 'tuck of evidence of HTLV-111 "'"·'"'"''"Yin ~outhern Ati-lca. !\iL'jL\1, )12 (lY85). 125?.
ClJUS2fl, 'The ucquin.:d imlllulle ddiciClh)' syndrome,' Pl1, 1 J--1 h; vv.c_ Cilinva, 'fdig!'alll kibour, ~ext tal networ.ling and multi-partnl:red sex in l\1alavvl,' H'!'i·\, 7 ( 19~7). supple1ncnt 3. pp. 6, 11; L. GnmJiingb, 'II!\7/i\lDS m Sllttlh .-\frka: a l:ase of l'ailed responses becalJSl' t)f dbcriminatlun and lHotal!!y, l9,S3 -llJ9·±,' Nnv CutJiret;, 4 b (November tJ.C. l3utha. c;nd others, "1\Vl) black Soutb Africa.n,c; v.,Hh ,Jil!)S,' .~'Jl\1}, 7) (1()80) 132 S.F. LydllS, crn.J othe-r~. 'Absence ofltiV infection and \\ onJ.c11 «hug sexually -transmitted diseuse clinic~ iu South Africa,' ( 19H7J, 87--l:- J; South .Afrlum lnslltule for i\Jedlcol Rescard1, Anrlll
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The Conquest of tile Sou til (pages 3 .\--47) 1 7 3
p. 11; G. Rmnjee and E. C~ouws, efforts on trnck drivers and sex ~:vorkers,' AlDS RulieUn, April <Jnd other~;. 'Absence t"lf HIV infection,' b"74-5; South African Heseurch. ~'lmw;~l 1 Y90. p. 50; N. ~.'!LA. Hooscn, and others, 'Sexual behaviour i.n 2uln men v\/umen witb ulcer disease,' Gt:IIituuriruuD A'lt!dicine. 68 ("1992). 24 7; K.L. Dunkle. R.H. Jewkes. others, 'TnmsacLion,ll sex among 'Nornen in SrrHrdo. South Africa,' 85-~1\·1. S'J (2004'), -1582, 1588. Comments, April 1987, p. '±3; R. Shapiro, H.L Cro;-)kes, anJ E. O'Sullivan, '''''"'on ina antenatal blood sample6 t(Jr anli-hun1an immunoddiclency virus antibodies by a enzyme-linked imn1unosorhcnr assay ·:-;.'_-\;\if. 76 tl989l, 246. T'. De Oliveira, and others cho:~raderisLics of human immunnddiciency \cirus 1 viruses from KvvaZulu -Natal. South t\fril:a,' Jnurnul of 1/it·ulugy. 77 {20l11), .2LJ ~v.!Jy 1991; lLC.\'. KHstna, J.P. S'iV
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(19'Al. l9S.
Q. Ahdool Katim. S.S. Abdool Karlrn. and uihtTS. 'Seroprevalence of UlV infection in rural South Africa,' .1lDS, 6 (1492). 1535 -9; rvU~. Lurie. B.G. \Villiams. and others, '\-\'bo infccls '.dwm? HlV--1 concordance and discordance among migrant and nordnigranl couples in South ' LiiDS, -i 7 (20fH'l, 2:245-52; V. A.-~.-'1. Vanueste,and U\-1 Tlmaeus,
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30 ').l
7 Causation; a
2
6 7 9
HI ll 12
u
14 15
Hi
17 I~
2U
21
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(pages 5
See J.C. Caldvlie!L P. Cald\vell. and P. 'The :.;oci'-ll context of ._\IDS in sub-Saharan Africa,' Population und Developillt:nt Revictv, 989), 18 5 -234; E. Still\'vaggou, 'HI\/ /iliDS in /1frica: fertile terrain,' ]mmwl uf DcvelopmetJt Studies, 38, 6 2002), J -2 2. S. /UtJ5~' anJ its metaphors (reprinicd, LoncLm, 1 For on earlier African epidemics, see 104. For the Americ1:in epidemic, se-e R. Shilts, Lhe band played un: poliUc~. people, and the AlVS epidemic (reprinted, London, 11Jk8}; E.J. Sl)bo, C}wusing wz~t~/"e sex: ~uDS--rlsk denial tl.l"tWIIlj di.>advaniage;..J women (Philudelphia, .l9~J 5 ). ]JvL Garcia Czlleja, N. \Valker, <.md other~. ·status of the HfV/AIDS aHJ methods to comner it in the Latin American and Ca.dLbean rcgio.n,' ~·HIJS, l b snpplement 3, s.l-12. B.G. \1\leniger. Khancbit LimpakarnjUIJarat, and others, 'The epideniiolugy uf lHV ii:.fcction and AlllS in Thililand,' AIDS. 5 (l '!91), supplement s7l-BS. J.G. C;oke (ell.), 'Pl1e secmid 1vave oj Lhc UL\/l AIDS pmult:tnic: China, India, RI!Sc;ia. Ethiopia. Nif}eria (Washington. 2002). Cohen. 'Asia and Africa: on different trajectories?' Science. 304 1 Y32 R. Bank, Cunj/·onling ~41DS: public priorities in a global epidemic 1 :J~7), p. :2. 1lifl'e. :1.fi'iunts: the histury af a COI1Line11t (Cambridge, 1995), Bank, Wm!d developlllellt repcJrt 199? (i'-<ee~ York, 199/j, p 2 31. P.J\-1. Biswalo. and A. Tnllc (cds), Yuuny peO[!le at risk: _flghLiniJ :HD:) in nor!ha11 1995), R.C. rviaulitz and DuHln, Princeton. 1990), p. 161. 1 '!Y3 (New 1993), p. 29. Ilnd., 1990, p. R. Gallo, \lirois hurtUIIfJ: York. 199.1 ). p . .3.20. Grmck, History of A IDS, The following JaLa are !\.1. CaraCi, ·sexnul behaviour.' in ). Cleland und B. Ferry (ed:s), Sexual behaviour and AIDS' in the developing world {London. 1 '::1St 5), ch -1. J. Cleland. B. Fo;:rry, and I\1. CaraCl, 'Summary and C(Jndu.sion,' ln ibid .. p. 2 12. JJt. Go~..Jdy, PruducLion and reproduction: a comparative st11dy of the domestic d.mwin (Cambridge, 1976), pp. l·-i-21; Cctldwell and others, 'Sudal eontexl,' pp. 185-234. L Corey, A. \'Vall. and others, 'The e1Jects of herpes simplex t'irus-2 on Hl\'-l and transn1ission: a review of t.~:.vo overlapping epidemics,' .:~f A.llJ .'.; 435-45; lVIIO, 'Herpes virus 2: repon of a (London, J 4--16 February ' http://Wwl:v.who.int/hiv/pub/sti/en/hi\. (accessed 22 March 2005). N. Siegfried. 7\.t I\.:fnller, rmd odwrs, 'HlV aud rnale cin..:umcision- a revie\>1. with assessment ~Jf the of studies,' !Jmcrt Ir~/Cctiow: Diseases, 5 RJ..J. 1\'lay, ln}Pctiuus diseases of humans: dynamics and comrol (Oxford, HJ.:i. Anderson l99i). p. 360. Cuody, Production. pp. 102--':l. A. Katz, 'AIDS. individual behaviour anJ tl1e unt.~xplained remaining variatiun.' Ajl·icwr Journal~{ !liDS Research, l J 25. N. Kaleeba, H·e mi~·s t.fOtl lHurure, ] 991 ), p. t:;t)_ A. Kilian. 'HJV/AlDS control in Kabarole Jisi:ricL UganJa' 26, http;// W\iVVv .ah'ouets-urg/files/gtz-aids-brochure·-tlgauJa.pdf (accessed 20 Seeley, S.S. :tv1alamba, and others, 'Socioeconoruic stl:.lt.us. gender and risk in a rural comrnunit:y in sunth west ' Med.i.ud /111thropolof!Y Quarterly. j.R. Hargreaves, L.:rd. 1\rlorison, und 'Socioecmwmic sta1us and risk of HlV infection
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186 NGOs {'1 the Evolution oJ Care (pages 98- J 1 I) Organization, 60 {2001 ), S. Nnko, B Chiduo, auJ othrr::~. 'Tanzania: AJDS care ~ learning from experience,' RevieH' /lfrimn PoliU,:ai Eco11omy, K6 (2000), 553; !\.F. experience of primary uf patients vl.'ith Chim.wa:za, 'A descriptive study {J symptoms of AlDS in resource poor communiLies: the case of MalavvL PhD HwtJis. Ui1ivr2rsity of Pennsylvania, 2002 p. 212, 2 J J,K. Anarfi, HlF/ AiDS in suh-iaht~nm ~·1JI'ica: its demographic and SlfciLJ-ecunomic impliwtious (Nairobi, 19941, p. 2.l. 22 J.K. Anarfi, 'The condiUon and care of .\.IDS victims in Gh<-mc,; _'\IDS sufferers anJ their relations.' IlTR. 5 11995), supplement, 254. 23 K. A\vusabo--1\sare, 'Living with AID:): perceptions, attlludes etnd pusl-diagnosis behaviour of H1V/A1DS patients in c;hana,' ibh.t., 2"72. .~..J.. J'vL Kadst.ake, Sec-recy and ambiyuity: home cart for people living V..'ith HIF/ AiDS in Gltana (Leid.en. 26. 25 A. Zwandur, and uthers, 'Acceptance and sligma!.izalion ofPL\tVA in Nigeria," ;JiDS Care, 14 (2002), I 1 7-26. 26 Chirnwaza, 'Descriptive study.' p. 72. 27 A.F. Chimwaza and S.C. VVat.k1ns, care to pcnplc 'i·vith ,symptoms of .-\IDS in n::.ra! sub-Saharan Africa," AiDS Care, ] 6 805. 28 E. Rats1na, E.P. !danjolo, and J. Sinwn, 'Vokes from ihe epidemic. Malawi l\ikdical (I 6-+. 29 }. E. Kajura, and others. 'The exlendcd f<.unily and for peoplt: vvilb A. IDS in a rural population in south west Uganda: a safety net ATDS Care, s· {1993), ] 17-22. 30 G. Rugalema, 'It is not ihc loss of labour: HlV/AlDS. ioss of household ln u health hazard: i\[DS.' SS'l'vl, 21 (1990). 953; Uganda: f·.'Iinistry of Health, 'AJDS Control Prognnnme: proposals for a five year action plan (J 987-19911' (duplicated. 1987), p. 35; Mafama Oinba . 'Health workers, the community and i\JDS,' in VlHO, A.JDS' preverHimi and contrvl 1988), p. 109. 34- G. VVilliams, A.D. Blibolu. and rJ KcroueJan, tlJc' aap.>": care a.nJ wit/1 HI\'IillDS in Cote d'Ivoire (London. pp. 17-]0; 'fran-MinlJ, L 'lJix en chanze du VIH/STU.r\ les cen!rcs Je traitement ambulatoire (CTA) de et de la Croi~-Houge F~aw;aisc,' l\!Udecine Tropicale, 64 "I 09--14. 35 Ethiopia, 'i\!lJS in Ethiopia' (5th edn, 200·±). p. 10, A!DSinEth5th.pdt (accessed 9 2005). 36 \VHO: GPA, Rt:vicw of HIV/AlDS care pruyrmn111es in Uganda awl Zambia (CPA/IDS/
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r
NGOs l.'cr I. he Evo!uti,;ll of Care (pages 9 8 - J l 1) 18 7
~.I
42 43
41
c'ost aild lJUalit~!J 14' conHHHHity lwnw basc!d can: .fLH HfViJIDS patients and 1hcir cummlmities in 8. Zimbutnve (Harare, 1997), Guuted in S. Arm~t.rong, marwging stres::; in ihm;e wlw care (or people wich lliV and JJDS (Gt~HC\'~1, 2000}, p. \'\'odd Bank, t.'ol~/i,unting !liDS: in u. glubul (Nevv York, 1 997). p. J t>2, UNfdDS, Report 011 Lhe glob~tl iuly (Geneva, 2002), p. 51. It )
r 992. See ulsu Smart and Fincham, 'Study LOur,' p. 29.
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G. Fo.->ter, 'lHV in youth and children ln a1
49
so .52 5.1
54
55
56
58 59
60
(;l
()2
63
64 65 66 67
68 61)
1)
' in B. (~annon (e::.L), Children
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'/U 7J
72
7j
7..:J 75
?6
7'/
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1 1 Death & the Household (pages 11 2- 2 S) 2
4 h
7 8 9
10
ll
litJilte
\ V. Blackman in iVlissioH Field, 6 7 (l 9 22 ), 2 ·1 5. P. Boggiu. '[ 'E:pidbmie de SID/\ fi Kin~hdsa,' Lt: J\iomie. 2--1 Dccernbcr 19S6; }•'_ Klails, 'Hou~ing the spirit hearing the Vllice: care and Unship in an apu~10lic church llutswana's time of AIDS.' PhD thesis, Jpirit,' p. 2hS. The St.1r 7 October 200 l. to child-headt•J Lonsdwlds: the case of children orphaned h:y AIDS in Kisnrnu (duplicated. Champaign IL Durham and f. Klait::,, 'Funerals and the spuc;:; of scntimenl in BotS\1\'ana, of St)LitiiCn!ll}dlall Srwlics, 28 (2002). ?S3. Basuakuamba vva Bashipayi, f'.'!bu Jv!putu, anJ others, CJO!!tiilces popu/aires t:otrcenuwt lt!s
l 3 H 15
16 17
IS 19
20
21 22
,, _, 24
2S 26
27
2H 29
tpid.:nlics
Lilt
llousel10id (pilges 112--25) lilY
Zaire) (Baudundu,
l\:dvk ,·1. sudd! meanings an ~'\llicun iulcrpret<:!tive Culture, }Iwlth md sexuality, l (2000). 2, 10IJPi'""'"'""""" rmtll~t;alth \N«imbi J ')')~ i. p. 1 30; ll. Muyinda, ]. uspects of ill run.tt Uganda,' lleahh 1mJ Piau', 3 aud f.P.M. Ntozi, 'rmpad AIDS on LhL family and monality l!1 tlguuda.' 191 ZOO; G.ti.R. Rug<.ilcma, :-ldt~lt mona!ity as eJttitlement /(lilurc: ~liDS alld the obi~' i~{ rum! liFtlilwods iii a Tanz!uli
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l
l 90 Vcuth L'r the Household (pages 1 U--2 5) 30 31 32
33
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3'7 >~
39 40
41 42
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A. Dunn, 'The social consequences of HlV/AlDS in FgunJ.a,' Save tbe Chi!Jreu Fund Overseas Department 2 (1992), p. 6; TASO, 'Strategic pl
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56
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The l::pidemic Mutlu-es (pages 126- .:l7j
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Cht~n,
'Condom
S. Ahmed, 'f. Lul<:J_Io and
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associaieJ wlth condom usc: a populalion srudy in RaLti, Uganda: illDS. 15 ( 2001 ), 2!71--9. i\Jah1wi, Kiwwfcdw~, :iLlitwle:::, m1d pnit:tices h1 1-!efiith sun't~Ir f 996 (:Zombo, l\!97). pp. ;·3---4; Zambia, DtnW[fraphic and ht:(dtlz 1 996 (Lusaka, lL;)97). l 50 --t; Tanzuuia, Dt'lllt"l., graphic and health survey 1 996 (Dar es 1 99 7'), pp. 1 Limbabvve, Dcmugmphic awl health 1994 (Harare, 1995), p. 152: Kenya. and health 1993 1'32; K. L. Brown, aud S. '"Tt's uot vlihdl yuu examining relationship bet1.vecn bd1a viur change nuJ i\LDS mortality in Africa. iiiOS Educatiun and Prevention, 13 (2ilOJ), 160-7".-L G. Kenyon. J. Skordis, and \)tlli.~rs, 'The ART of raiioniu~ -the need fur a nen· approa;.Jl w cationing health intervent](Jns,' 9 3 (2UU3). 5/'. ~ UNA!DS. Report on the gloi>a1 2004. p. l 7. D. Meekers, 'Patterns of condum US(:) in ttrban wales in L:imbabtvc,' ,_1./J)S' Care, 15 (2tid3). 2~9; E.7VL Stringer, fi.t Sid,..ala, and othc"'rs, 'Personal rbk perceptiuu, HlV t<.t. i.Vr miss you alf (Harare. 1991). pp. MS. HuvC, Id. CaraeL and others, 'lViulticenLre stuJy on factors determining diiiaL:nccs in rate of fUV in sab-Sahanm A.frica: mcthtids anrJ of HlV iufccthHl," 1i1DS, lS L supplement 4, sl2; Lc ()uoLidicn, 2-'1 2004; UN~~\1DS, 'AfDS epidemic the gloLal burden,' p. 2183. update, December 2004.' p. -±; 1.-Valker and others, AIDS Bulletin, 2000, p. Inter 24 200:1, '""'""Wil<'<)lll/"nne" (accessed brlnk ).pdf (accesse
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73
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vrevalencc.· p.
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HIF/ .'liDS: tit:: impaci
Oil
6
10
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I. ,\lwdno Euycgu allJ Marum.
K11orvledge is pmvcr, p. "l 9. R. Sabatier, Hlmniuy olhers: met: und worldwide -1fDS (L. mdon, Nigeria, 'A~ report on the. indicutors in http://www.unaids.org (accessed 30 NoYcmbcr epidrmic 2U04, pp. l91-1; Nigcrio, National policy on lttt.p://hh.'aidsclearinglwuse.uncsco.org;tlle_ duv\'nloaJ.pbp (HRJN, http://allafrica.com/stories (accessed 11 2005). R.!vL Anderson. "J'he spread of HIV and mixing patterns," Ln j.1\J. t.·hnm and D.J.l\1. Tarantula (eds), AIDS in lhc lvorld If (Ne'\.v York. 1996). pp< 72, 85.
P. Piot anJ P. 11"!\IDS, Commons
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epidemic,' !HD.\' C11re, ) 0 ( 199U). supplemell1 2. s.202; 1~98). p. l S; Creal Britain: Hou,'L: of Development Cowmitlee: Third sorwlon::l rt.·onom:w •iPl'Rionn•cnt (HSC _)) ·L 2 vols, Lon dun,
14
15
lh 17
!9
20
Jl
22
l 97
l, p . .?.1-± IYh.lt'S evidence-). tJN:\lDS.
'AiDS epidemic update,
December 200.?., IJatlonal de lntte contr'l~ Ie VlH/SIDA -i December 2003); Benla 'Cadre VIH/STDA/!ST au BC:nin 200 l-·2005.' Togo, 'Cadre Ui.ltional Je 200] -2005,' ill tp:/ /W\1\IW .lUlaidS.Ol'g 'fdl1ZLlnia, 'National mt"llti-sectoral :-;trategic framework O!l fHV/i\fiiS 2tHJ3 2007,' hlqJ://1'1--'VI.'\\'.unaids.org (accessed 25 November 2003). RC.publique Demucratique du Congo, 'Declaration d'cngagemen~ le VlH/SlD:\.' l2U03), (accessed :2'1 November 2003). UNGASS Jecluraliuu of commitn1ent on lHV/ATDS: COLHltry ' p. 21, bltp://\VW\'\.1 .unaids.org (accessed 21 November Tanzanla, ·t"--a.tional mtdli-t:iectoral slrat.egic fl·arnework.' \\'orld Bank, Ctn~ji-uniiug /!IVS: pllblicprioritits ill a ulobai epidemic (Nevv York, 199 7 ), VP· xv xv1, ~J-5. H2 !. \Vurld Dtmh:. LflLctL>>LLuuw action against l!!V/AIDS iu .Ajdta: r!!spondill(J tu a development crisis vi, !-±;A. VVhiteside. in ..:1A!l, D.._;cembl.)r 1999. 'Ecolt)gkal and judividuallevd of risk factun:> fur H!V ilifccLion in four urban m Sdb-Saharan Africa J.iHerenl levels of HIV iuf~.:ctiU11,' AIDS, 1 (2iJ0] supplement ·:L s.t5; E.C. Gcccl:l. Rethinki11g ,llDS prel'elltion: ]t'!Lrttillg ji tJiil SLICCeS~LS in COIIfltries l\:\1estport, 200 3 ). 3 }-6. Cl\"at Britalu, tEVr' ,JlD:J: the iiJipact, vol. l, pp. lxxvi-lx.){ix; 2, p. 6'.i \\;ur!d Ba11k, Coqfi·onting ~1lDS, p. 1 0; Great Britain, lllV! AIDS: 1l1e illtpacl, vol. l, p. lxi. E. Gallo, Fims huntinu: 11IDS', c:~ncct; awl the hunwn retrovirus (New Yod;:, 1991 J, pp. 202, 305. J.Id. lv.L.-:~.nn, D.JJvl. Tarantula, anJ T.VV. Netter (t:Js), AlDS iu tfu' world (Cambridge, 1\Joss., "J ~l(}2J, 8l.i; \-\lodd B~mk, Ctn~fronting JlDS, p. 17~J; A lOS Bull~Lin, July !<J~.H.. p, 17. J.S.A J\.L Slnkula, and others, 'Comparison of two strategies for admillit:iLerlng tl) prevent perinatal H!V transmission in higll-prevcdence, resmm:e-voor settings,' AiDS. 3.: (20li3), 507; B.H. Chi, ~- Cbansa, and oiLers. ·Perceptions toward lllV, ll!V screening, cmd the nse of antiretnJVircd medications: a survey· of nHllernily-baseJ health Cdrl~ providt.:rs in 'Zambia,' USA, 15 (20~)-1), 685. :rd.L 0loliH.l. AE. Creenbcrg, aud T\.·I.G. Fu\'vlcr, 'A revie\'\1 uf clinical ldais to prevent morh~r-~o-diild IHV-l transmission in Afrki..i and inform rational inlervention strategies,' Kuhn informed choice: infant feeding dilemmas for JlD.)' 16 (.2002), l Y9l···9; \vumen in lu1-v-resource comnmnitks HIV prevalence,' Su,'ial Dynumics, 28 (2002) 1.3 3---4; J.T. Bocrma, AJ Nnnn, and \Vhihvorth, '1\.-lortahty of the A lOS epidemic: evidence from community irl. lt~s.s Jcvdoped countries,' J 2 (l9~t..;). suppl.::nH..:nt l. slO. "l 71- 2; 0. Shisanu, Uganda, arulllealtli sw. vey LOOU-200 i (Entcbbc, 200 i ), !lfricrm twt.ional UIV f.. Simbayi. others, Nel:-;onJ\Jundela!IlSf.tC. study l~{ lllFIAlf)8: prcmle11Ce. behavioural risk~ and mass nwdia; hoilselwld s!JrW!J 2002 Tmvn, 2002), 1'· un child he[tltl! iu C. \:Valra1·en, ,A~. NicolL and ui.hers. 'The irnpact of HTV-1 0996), ~ 14; S:1A1], 90 sub-Sahantn Africa,' Tmvic
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a prograu1 {j)r prevention of mulh._~r~lu-child iran.smissiou in r:ganda.' illl)S. 19 {200)), 433-7. J\1.-A. Etiebet, D. Fran0man. and oJLers, 'lutegrating pre\';...·ntwn of nHJther-to-ci-nld HI\' transmi~sion antenatal care: learning from the t:xpaieuce:;; uf women iu Suuth Africi:l.' AlDS Care, 16 (2(104), ) 7 -46; P. Dobis ;md R. 'IllV-1/AlDS and OJatcrnai and child health in .-\[rica. Lull,'<"L 359 (2002). 2097--2 Botswana, 'Status of the 2GU2 nalional response to the UNl~A.SS declaration nf cummilment on HIV/ALDS' (2003), pp. 1], 42, http:,/,i\\rWt-v.unaids.org (acces::,cd 21 Nu\·ember 2.UCU): l\!Iail and Guardwn, .2(, 2U03. on lli\1/,\IUS iliNCASS): !Jg,lllda Uganda. 'Follow-up lo report, jmmary--December 2002' (2003), (UCL.e::>sed 2 8 2003); lTWRlN, 10 February 2005. l 21n:essed 1 l Fcbmary 2005), llN.-\IDS, Repon on [!It qlo/J,ll AI OS epuftiiHt' 2004 (Geueva. 20tH). p" 8Y: Dwhr (~w!udza, quoteJ in J. Hall, TesLimu!lits t!f lwpe .flmn people n·ith 1HF und ATDS (fohannesburg, 2UU2), p. ]22. South Africa: D~panment of Health, 'Es:,ential health cure fur uU Soulh investigation into the adequacy of public health finaacing ctnd the rcsonrce distlibution' {September 20CLq, p. -1. Mcintyre and L. (~ibon, 'PLltiing experience from ~uuth Africa,' SS?d, 54 A. Grimwood, ~L Cre\Ve, cu~d 0. 'HJV/AlDS: current L-;sucs,' in Health Systems Trust, South Africdll hea/t!J review 201!!:' (Dmbau, 2000), p. 2Yl; H. Sdmeidc1 and j, SkilL 'In1plementing AIDS in post aparlhdd StluLh Afrki:l,· SS!\-L :J2 \2UOJ ), 7:~6: van der Vliet, 'AIDS: losing new struggle? VaeJullls, i 30, l 2001), 16), N. Dodier, de l'ipidCmic de sida (Paris, pp. 288--93; H. !vlar sur un du sida'' emergenl: cas ivoirien et sentgah1is,' in -P. IJ;Jcr, Y.A. FaurC, anJ otber::l (eds). OT\'G tt divdoppement: sockli. (:conolllic, poliLiqw.: (Paris, 1 9Sl8), p. l35. UN/\[DS, '.'\iDS in Aillcu: three scenarios to 2025' {2005). p . .:,l--1, h1tp:/,'t-vvJ\·V.Lmaitb.urg/ ~accessed ? A·Iurch 2005). 'Prl'n1iccs et JCroulernent de rfui1iative U Y'::/h-.2000),' -P. Moatti (cJs). L'aL'~.;Js aux tmitemenls Jti VIHI sidtt en l'dtt: d'lvmre
;
Cm11uim11mt (pages 13ti-5/) l 'l') -[6
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41 42 ~n
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pS<et~tloscrcm:e,' St'ietll~r. l~~s i-~OUf)),
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July 2001, p 3 7. i.\lt:Je...:ilJS :-.tl!IS Frouiie1es, 'S!lriiJOLlntlug chal!dtges: pructu emcul of autiretrovira! rucdiciJit'S in !ow- awJ Hli,]dlc-income ctnmtries' (20CU), p. /', hitp://W\>1. vv.sccmmcd msf.urg/dtn:umeut::./
--:1. ApriL and S fun,; 2()(11; V. van der Vliet, ·solt1h A.frica AlDS: a crbis llf leadership,' in K.U. Kuuifuwn and O.L. LitH.iaucr (eds), AIDS the S(Jcial of u lllll!deudc tBasingswt... e, 100-1). p. b~).
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l\loUand(Jiwnlitlll. 22 Octuher ..!.()()4; quutation h1 M. rvlartin. "llfV/AIDS in Sot1th \f1icu: can lh,, visudl r:rls make a dlffcrence?' in Kauifrnan dlld LinddtJl:f (cd~), A.l!JS', lJ- ! 27.
!\plii 2002. p. 1L l :1.nd 22 i\larch 2002; Hey\'•..rouJ. "Price nf t.kunl.' '-~m·a\' Tru~t. Sou til 1ji-rcmt health rcvinv 200.2 (Dud>arL 2tJU3). p. x; I.. D. Regeusberg cmd ld.S. }llslop. 'AiJ for AlDS: a repl)ft bnLk on more than four :, ..:ars of Hl\'/AlDS disease m t>outhcrn Afrlcn,' Suwllern ~1./l"illifl ]tmmai vj fll\' lvlcdicillt', 10 (Febrttdry ~00 l. p, j l: C~ A! DS, 'J'hc private ;:.Cd{!l' responds J,, !he .:pidt~iJJic: 1jc/Jswww-:C\'ne\a, 20tJ2), VP· L~. ')± -6; iJN1\IIJS, ~kcelenlLiilfl L AllJS' ill
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20(!3). p 19; ,\7cv.7 Vision, i 1 DccemLer .2UUil N.Z. Nyazcma, S. KbuL:a, and other~. 'Autirdioviral (!\RV) drug u1ilisatiun in Hamre,· c~mml /lfri,'ml [(lllrllal of L'viedicinc, 4h lJN.\lDS, P.J, \Neidle. S. :Ma.lamba, and dthcJ:;:., 'P.~~t:.cssment of o in Uganda: pc1LielllS' re,<,pons~. survival, a11d 3-1---±0; l'}ew \/hi,m, J.() July l Y90, 0 and 9 December I (G~n.;vd
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1\l \V. Iv1akgobJ,
pt ,_~curemt'ntrepurt pdf (accessed ..21 March 20{J5l; P BurJd, '(~lobaiization. vhunnaL·eutical and .Suu!h All icun health lnternatio11al Juunwl (f Health Savi~·t's. 2~) 1 199Y),
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Qllartcrll_l, 23 (2002). 3b9-- /'0. See abo pp. l 00 -1. i\lanchester, 'The HIV epidemic in South Africa: persoual \'ienTs of posilive people.· .\L\ (Educatiou) th~sis, University of Lnndon, 20:10, pp. 2'), 74--7; P. Bu::.sc, 'The relationship between the National HlV/AfDS and STD Uirectorate and the P\~VA sector/currll1Jltllity,' AIDS Bulletin, September 1996. l l: ibid., 1997, p, 38. l\L Heywood. ''T'hc price http:f/www.tac.org.za {accesc.ed 7 1\-1arch 2005). P. Das-. 'J:ackk Achmat- head of lJiseast~s. ·1- (2004). -107 -70; Z. Acbmat. 'The Treatmeut i\dion Campaign, and the Govcrnme11l,' Trwl~jonllillion. 54 ~1004), 77. UI\AlDS, lwckji-olll rhe edge: the pursuil o.f ailtirel!'oviml inl3o[sv.:ww, South .ljnca ai!d Ugtmda edition, Geneva, 2004_}, pp. 28- 36: 'Treatment .L.'!~ctwn Campaign.' pp. 76 -84; C. 1\lenJd, .1 brokw landscape: llll! ''"'i !liDS in il}rkd (Auckland Park, 2001), p, J '!4, K. CulHnan. '{\.lwyehtshn womt::n get lu-_:hy,' AlDS Bulletin A.pril 2001. pp :l--5; Dotlkr. Lq:olls. pp. 2 t)3 -+. j. Simon-!\.lcyer, 'A.ZT - the saga continues,' S"-'L"'vlj . .S~ ( 1 ~)Si':J). ll+:l --5; A-lull LZtul Gwudl111l, 26 November 1'.199. AWS Bulletin, September 2000, pp. 4-7. ]\;Jail ami Uuardiarz, 1 June 200 l. S.C. Katichman .md L. SimbayL 'Percdved social context of /'..lDS in a black i..o\!1/l.l::.iup iu C.Jpe Town,' .1jrium journal 1Jf tllDS Resrarch. 2 3 3 8. Letter from F.S. Dlamini of Durban in Guardian. 1 S Septemhef ..2000. Mail und Guardiau, 2 I july 2000.
1-vumen iH 'Zambia.'
I
pass1m: U. Kat:t.cH~tein, .l\-1. Lagu, and J.-P ..f\Aoatti, 'The evaluatinn uf Lhc HlV:A.. lUS drng initiati1·es in COte d'lvuirc, and lJg~mda,' AI!JS, ! 7 (2003),
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supplemt'llL 3, sl--1; C. faureni, N. IJLJ.khdte, ancl The Seneg~![ese high!y uclive antiretwviral therapy iliiUativc: an I ('}-JlWlHb fulhnv-up (_?.002),. 1 Hd-70. ~.1. 'l.d lutLG coutro: lc SILL\ en AFriy_ue: perspedives e1 re~ponsabililbs.' Ml'd.:cltlt! (2004), 581; lf":"·.JJ\lDS,
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71 72 73
'7S /'Y
BO
8l
C; :l
8-t
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and H!V;MDS in WHO,
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Karim, Karim, and c;. Baxter, 1hcrapy: challenges and in Somh Africa.· LatiL:eL. 362 {J003). 1499. Brilain: Hou;jc- of Commons (St'ssion lOU~ -U3): lnlernal!tHlill De\'dopnwut Committee: Third Tfw lumumiiarian cri;;is in soULhern 4jn·a. L!l. 2 (llC11f:; .. l!: Li111don. 2003), pp, l!NAllJS, Sce~ping 1'
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C. \Vendu. (lU05), .2·+1
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sector in Nigeda' (accessed -J july 20():!); Nervswwclt, 2B 9.2 Quoted in C. Bateman, S!L\lJ, 91 (2tl01). 3o7. 93 C. ·Antirctrovirals give new h{;pc awl ne\1\" life tu Soutl1 Afl'iums.' Ltmcer, 363 {20U·ll. 1 also !1 Boullc, D. Coetzee. a;1d .M. Dardtr, '1\eGt>ctwns and nen: challenges after of illV scrdcc; i11 Khayelitsha.' Sawh :1,h'imn Joumal t~/ HIF lvi2dicine, 1 3 (tlay 22~4.
S14 South Africa, 'Operaiional for cmnprehc::nsh:e H!V and treatment for Suulh 19 November 2003,' careplanl'JnovO l.lmn (accessed 7 Man;b 21)(J4).
lwaiih revk.\'V 2005/(H,' pp. ".i. 7, l-:1: Dccunber .20l}...I_J; TH:'aillH:~ut _--\ctiun repo!'t on the implem~:matiun of the care, managemtml and trearmen! i~lr South (accessed 1 l
Afrkr.1n
9'5 1'
Catnpaign
Hr~!
SeLJiembt;r tJ~~lHJr'l 23 February 200S, '" 3 by 5" progn·ss repurt,' pp. 2] j<Jll!Jary 2003. 97 J. \\.'ab1H1, 'TradiUOJial healert:. 0C
The evolution and dislribuUun of subtypes are oulHneJ h1 r.E. P.'kl~utchun, 'Unller~Iundi11g the genetic thwrsilv :•f !U\'-1.' _i!DS, i4 jJ.OOU). snpplcmenl l, s3l-:H, ami M. Peelers, C. Toure·K<.111e, ; ,·~. Nhcngasong, 'l~e11etic diversily of !HV in Africa,' A.IVS, i '1 !)00"1), .2 54 7 on.
Epidemic in \!Vestcm Equatorial
General c\ good place to :.tad is the lates! issue of UNAHJS' bienniul Hcport un ihc ghbal i\.lD.S epiJcmlc· An annual 'AIUS epidemic is pnblL-;hul for \·'\iorld Aids Day (1 on the ::.ame vvebsitc. can bt: ""C>''cu•c•ucu ducumettts from tllt~ \Vi H)
(lrttp://vv\V\V.'\1\'hu.org), (~luba] Fund UNICEF {h!1p://WW\\'. Ullicef.org,), ancl other bodies. African governm~nls, and many N(;Os ltave 'vebsi!es. a.nd dcbale appear in periodicals lih.t: iliOS and founwl Aiediml ]ounwl publL>h similar arHcles and more arc available online. The online c<:Jtalognc tlf the Brilish fL)f Development provides lmks to a wide range of government documents and l\Io~t major /~JficaiJ newspapers me available online; a conveniCJfl scbction .if ·r·n1 nrli is availabl;:: on http://allafrica.corn/aids. ~d. l~ssex, S. 1-Jboup. and others tcds), /liDS iu A/"rim (2nd edn, Ncv~· Ynck, 2UU2) b. (tU of the entire sub:ect. T. Barnell and .\. \Vhiteslde. /liDS in the V'"""''""'·'"" (Basingslokc, 2002) is a briefer introduction. There arc pap~rs in Sctcl, Le"vis, hJHi 1\L Lyons (eds), llistorks uf trans1mtLcd disctiscs and Hl\1/A.lDS in sub-Salzman il(rica (\Veslport. l~)CJ9); J. Cailhtdl. P. and others (l'dsl, Rc::.istances to behavioural du~nue LcJ reduce 1IlV/.4IDS iqkction in predomiwmtly lu:kmsaual Third HTrJrhi countries (Canberra, l99~J}; anJ E. KaHpcni, S. Crddduck, and other::. JilVS in Africa: beyond epidcmioloou (Mahk:n I\1A. 2004). S. Sontag, "41DS and its 1/letaplzors {reprinted, London, J. 990) is a wonderfully es:3ay. G. lvicudel, A btvkcn lmubcapt:: lTIF and lliiJS in (Auckland Park, remarkable photographs. M. Jvfwangi, Tlu~ last plauw: 2000) is a fit..h'd sd Jemie. For comparative material on lLe hist,)ry of epidemics, .see T.O. und P. Slack Epidenlics CIJU.lideas (Cambridge, 1 SIY2). A more technical ac~._~owlt is 1\.i\J. Anderson and R.~. :L Ma:v, In.f(~t·tluus diseast:s of lumwns: dynamics lllld CO/lLJnl
(KinshdS<:l. 19BS) provide::; l:l Cungole~e perspective on the carlie;;t and S. Fbhcr . l-JlH:h, Level4: Piru::; hunlcrs of" Lhe CDC (New York, J :J9';) was l). PhlL. T.C. .Ouirm, and otlwrs, 'Acquired syndrome in a population iu Zaire,' LatL<'t.t, 198±/H, 65-9. J. Cohen, 'The rb\' and fall of h·L)jet SlDA.' ScietJce, 2?8 l S()5 .. ,S, uwlines its hi~tury. lls findiugt:~ '.rcre summarised in T.C Quinn, J.M. Mar111, othert::, 'AIDS in Africa: an epidemio!ogiciil parLJ(ligm,' Si'itntc, 234 (JY8b). 4S5 -6-3. and J.;\f. I\.lann. 11. Francis, und others, ·surveilL_ince fur :\IDS ill a ccnlral i\l'rL::an 'fi\MA, 255 ( J ~J8(J). '3255 ':J. The import<-Jnt papas ure collected in D Koch-\Ve-t::er and Vaw..len-lt'hmidt (eds), The helt:IOSe.nu!l !IWISillissitJII ~11DS
in Jjrh:u.
{C~lrubriJgc
1\JA, ] 988 ).
(~,
t_19~J
regiun.
4 The UriFe
It!
de,:, mfcctim1S ~~ \'IH t:11 1-1!'riyuc central~.' JmwliS de fa Stk'iJU. 3), 1 2 7.. -1 2. is a penetrating Mln'cy of the vvhole equatorial
l.he East
T!ic ong!nal rcpnn on Hakai and ]\.Jasdka n·as lJ. Sen'\·i:alJa. NJ..:. Sewantambo, and uib.cr~}. 'Sluu disease: a n<-:H.r disca21e in CganJa unJ it~ as~uciation wilh H'i'LV-lH infection.' Lane!!!, 19:15/iL g.,;.9-S2. E. Ho(:}JeL Slim: tJ r~p~.Jrter's 1)\.V!l si,;ry qj" A]J)S in L'ast Africa (London, 1990} is a vivld first-hard account. eur teclJHical recon~irnctiou L>f the cvidcmioldgy, see R. Stunl'bunwr, ld.
CcL1hallo and otht'l'S, 'SJirmlati(Jn ol ill\.' incHience dynamics in the Eakai populatinn-based cohon, ' AiDS, i 2 ( l 998) llf:.-8. There IS an important unpuhUsheJ analy~is by 0. Low-Beer, dil1usitHl uf ~·\IUS in Ea::>t Afrlcu: frum emergence to decline?' PhD thesis, !Jniversity (A" C~Hnbridge, 1 Y9 7. The oHlv m·e.rdew of 'Lmzdnia is fvleasure Evaluation. (Chapd Hill. 2U01).l\ lo-cal study is P.\V. Setcl, umlilcmoyraplqJ iu norllllTn Tan::.anit! 199\)). 'fhc Nairobi was analysed ill F.A. Plummer, N.}.l~. Nageih.erhe. dlld ulht:r~, illlb)Orlance t}f core group::, in lhe epidemiology awl control d lilV-1 infection,' il])~\, :;;; tJ ~J91 '1. supplewcni 1. s l b9--'76. On Nyrmza tlt.-~re is an ow standing thesis by P. \1V. C(·isster, '"A1.:: \t'L stili t<Jgcther here?" Nc.gotiHtions about rclatedncJs und time in the everyday life of a modern village,' PhD thesis University of Cambridge, 20U L Twu good Ethiopia arc FcLleral of Health, 'A.IDS in Ethiopia' (5th ediLiou. 2004: ~1lld L. Garbtts, "HIV/ AIDS in Ethioph:' {2.[)03: (~arbus has an ehceHenl bibliography.
2 Oriyins
5 The
Accessible scientific t:H.TUlHllS of the virus ctre J.;d. 'fdokcular uf III\',' lll K.A. J; J.F. Hutchinson. bwlogy and tW0Crandall The evolution L!{ 111\/ lBaltlmore. ] ~5 -JO!l: 'md ll.D. Sdwub, c\llJ:)andlil\' lulion of HIV, Annual Review u/ A.uthropolomJ. 3U ii1 paspective (2nd eJn, Cambridge. 1999), The pioneer account M.R. Gnnck, lliitmu of /dUS (trans. R.C. l'duulitz Duflln. Princeton, 19:10) still asks The nw:,t elaborate (and :-.tu~._ly of cxigins is E. The riw:r: a journey Lire source of HI\.' m;~l .:1IDS lrc•printed, 2000), a remark<Jble of rest~arcb \lvith a contentious hypothesis. For criticism, sec J, Cl)hcn. 'JJisputcd AIDS theory dies its tlnal death.' Scicuce, .292 (20\lJ ), 615. [1m11he references therein. Key papers
The Karonga m~:nedJJ is li.stcJ in nuk ltd 5. For \:cntnJl i\fricc1 therl: vdth guoJ [)ibllugraphh::s: L Carblls, ilt ?vialawi' (200): Garbu~, 'HfV/ AfDS ln Zambia,' (200 ): bup://ari
202
rlw SouLiz
L;arbus atJJ C.
Khtmw.lu-Sakuluk~va.
'lllV/AilJS in L:rmbabvve'
for the extensive- 1 escarch in rural i\-fanicalanll, llid orhc:rs, np!urn itl mortality in rurd L.imbdbvve,' AlVS, The epidemic in Botsv,•tmu. is uutlincd in UNDP, Ht)tSV.. 1!111Ll human development
204 FurLIICi Readintj report JOUU (Gaborone. 2000). F{1r lhe :;,(Jt:hll cuutext, sec D. J\1eekec·; and G. AhliJtd.
Ton[cmporary pattern,<, of adolescent ,sexuality lu m han lJob'\A'<:Hw.' fournul (~l Bioslnlul Scirnce, ·.s 2 (2000), 467-~S. The context and cady hisLt1ry u! Lhc Sourh \trican in H. Phillips. '.\1JJS ili the context <.Jf South :\Ji-ica's epidemic hisit)ry, ]oil mal, :f) (November 200] ), 11 2(). and L Grnndlingh, 'Hf\/j,\illS in Suuth a ca~e of faUed respo11ses because of stigmLJUzation, discliminatlon and m11rality, l ':)83- 1{)9·:1: New Col!/rec. -U) (NoVC111ber 1 YY4J, S5--Xl. For subsequent grmvih. see BJ]. \Villiams and E. (;,1uws, 'The of human lmmunoJeficiency virus h1 Souti1 ~\Ji·ka.' Phil, Tnitl'i, R. Soc. L_1nd. H, 3 56 The mo::.t ~xtensive survey is 0. Shhmm.t. L. SimLayi. and utLers, [\ielson iVlundda! HSJ\C sJ wiu ,~,f 1-ilF/.dUJS: South A)riccm Jiational lllV pn..;mlcllt'C, beh,n•wurul rLb awl mas.s m::dia. lwu::,e!JoU sw wy 2002 {Cape TmA'n. 200:2). Health Systems Tru~t publi~1hes detailed_ Somh Africa.n hcJHb reviews. a\'ailahle on \":ww.hst.org.;;,a. Amnng the stuJles of sexual bt~haviour. st'e csp~:cially 1L fiunter multiple se:s::ual-paflJlt'fS, AfDS: tl;c; making un.J unmdl-.idg of Is(;ka in K\vc(Zulu Ndai,' TramfunJhltwn, 54 {2004). 121-53.
6 The Penetration The
tl1e West
is analysed in .:\.C. hmlscn, P. Aaby. und :Jlhvrs 'Hbk among oldL:r in Guineu~Bbs<Ju: <1 ~eard1 for 1hL' c,, .. 1tlly Disc-ases. 32 i_200U}. 1 b9--75. K.M. de Cock, K. Odehmni, mhc~r:::.. 'l{apid emergence of AIDS in Ahidjk-1.11, h·ory C'oasr. Lmcer, l9S9/ii, ..JOS-·11, describes the t~arly HrV-1 epickmic. An origiu:1l accotmi of dis(_;ase ln Abtdjan can bl· found in \'Ji,h-Kirn Nguyen 'Epidemics. imerzone:> aud biu~nciol retrot'iru~es and or globall~atinn in \Ye~)( i\flica,' PhD Ihe.:-.is. J\·k:}ill University, For expausinn from d'hmire, sec· S. 'Tvn·h·c HlV 'AJ]}S in c;h<Jna: ofintcrprcltHion.' Cwwdicm Swdics. 3512t)U .,l_--±J ~7.2; C.i\i. Lu\vndc~. td. ctnd others. 'Role of ~.~me and groups jn Lh.: tran~ml:::;~iou dynamics of HlV and STI::; in Cotonou. Benin.' Sexwdly Tmnsmitted lnfe~.'tions, 78 (20l}0), 1. i6Y -77; ,'J, Hl\'~2
in
l
Fwtlia Headi11g 205 iu india
DelhL 1U02J; j. Coiwn, '/\:::,la and Albea: on dilfereut lrajcdories?' S'cf.:::nre, !.2!10-d.L 1 8, <..md counedcd !:1r!ides. _i_;dr fiS\1-2., ~l'C L. Corey, A. \.Vald, and others. "1he dkds of shnpk:x virus 2 ou H1V-1 111b::,ion: tJ. revk\V of L\·VO tW~rlapping epiJcmics, Journal o{ ~'lfl),)', 3 S ( 2\ )(),:J), 45. The ctuTcnl slate f1f research l•H mak circumcision is sunJrunrised in N. Siegfried, _,\1. l\Iu!lcr <-1nd <.Jthf'l't>, 'll!\· dnd male circumc!sion a syswmauc re\'ic-\v \vilh us;:;essment uf llw of studies, Lu1ct:t lt{/Ccrious l>iseasts, S (2005), J (>) /3. Papers reporting th0 fiwlings of fuw ci!.il's studs· ~..r..: in _AlDS, 15 (2001), supplement 4.
!lbovt' Junc;.lli
[bra Ndoye,
(~uiw·:~l-Bi:-'s~m
N. f\leda, and uthcrc;, ·_I:tevlcw d' STl anJ lllV epidermnlugical clatiJ. Burkina Fa so,' Sexllally Trausmilled l1UfcLions. 80 (100·1). ] 2'1-0.
The only general study of
sida.
(h-Hb, 1996)· B. Hours (,;d.), Sy:.rdmcs (Ccllnbridge, 1998), ch. 10; C.
success story is analysed in N. Ibru and stabL~ l--lJ\T mfectiun ra1es in Senegal: natural course of the epidemic or for suc~.:ess of prevention[' AlDS, l3 l199'-J), 139 7 ~ 140 5 For social context. ::>ce l\1.1 .. Renaud, \%mwn at the crossroads: n C!nnmwJilt!'s response to AlDS inurba11 Senegal {Amstf'rdam, 199/l A.Y. Sailvadogo, Lt 2003) is <:t view [rom rural Burkina.
7 Causation: a An c:xp!analion ::..tre.s.sing gender relutiuns UJld sexual bellilvi()UJ' i~ J.C. CalJ\·veiL P. Cahhveil, and P. Qt1lggin, 'The stJcia.l context of AIDS in sub~Saharan Afri~:u.' Pupulmion Rn,itw, 15 tl989L lSS-234. is stressed in E. Slilhvaggon, "BJV,'~ 1,IDS tn 1\frica: krntiu,' 6 2002), l-22. A careful study pfrelurion:,hips bdl/veen and socioeconomic status is L.t\l. J\1, lrison. and others. 'SocioeclmJmlc status and risk l'f UP/ infection ir) an portllalion in Kcnsa,' Alcditiue and l!iternational flr'allh. 7 (2002), 793 ·XOl. Basic data on :·;cxnal helwviow ure in Clch,nd ilnd B. Ferry (cds). Sexual behaviour and /liDS in riJe world (London. 199 5 ). Account::, of earlier African epidemics <md K.n_ i-'altc:r:,ou, lJis,:ase 111 African history (Durham NC, 197H); l'>J. Vaughan, t!J,~ir .-ulortial power and ;i}t ii rm Illur:s0
(Cambridge, 1991); R. He(-le.hick, Culonialism, mul illllt'Ss fr; French 1 X85~-1 Y -35 (Adauta., J 9~J -i): R. Packard, blnck labour:""""'''"'"''' omu o.f JJ~alti1 11nd disea:-,e in South --\(rka 19f;9). For HJ\' epiden1ics in Asia, see B.c.~. VVeniger, Kbanchit anJ utbers, · fhc epiderni;Jlogy of HIV infedlcm and zUDS in Tllailand.' c:UVS. 5 ( ), supplement 1. S7l·-XS; S. Panda, A. Chatkrjce, and /'LS. Ahdui~Quader (eds), Ur·iny \virh ihi! AIDS virus: 1he epidt"lllit and the
L U.Y. AJarnn, /liDS a\\\Ueness \I bad au, 200 l ). S.:;negai's
otl1er~. '] .rnv and stal;k~ HIV inl~ction
or evidence for ::::ucce~s of HDS, ] 3 c1it-:i::- of /~IDS and tbc pulHic~ response: the case of de l{dudons, 13 6 (Dccewber 2U0l ), 69-8/; D. Passin, 'I.e domainc pouvoir, politit.Jue et siJa au Cungu,' :1tuwies£Sc:, :1:9 (1991), 71S -7.1. basic is N,\COSA, A fi_n S'rJW. h A.frl~'a (Sunllyside, l Y9-1) fhe roics of medical Jocturs are discussed iu L. LP silt:nc~: r::t le S!.5llS: cssai du P~irkhttrst,
Belaw Evuhriug pdptllar \·lew:; arc trdccd in P. Ubumba- ja;:-;v.'a. !\'lass mulia awl .'-iJVS i11 13orswana: wht~t rfu~ llt:W':lJII.I[J{'J'S Stl.lf ,nul Lht'ir illlplication::. (C<-lburone, ] 99 3); A.K 1\'futembei. rotll lJ 1/JUl AJlJS ill Tanzania: tllld IJielmiynues !IJ Jlaua oral tnuhtiuJJS (Lclden, 2{)01); j. Lwuwla, 'Tht~ [lujvb·lin the l\1alan·i public ' !\/dum journal oj i1llJS Research, 2 (20tH), The Deilltlffrapllic awl healih surFeys (;ach country cuntaiu mas:::;n·e infunnatltm on ular vkn.s a11d understdlJdillgS. Testimonies fr(;m fHV-pusitivc
'''00).
uf sligtlHl, ~iltlJL'C, lllV testing, and famil}' conllkt is K.j.J. lVlcursiug, A ivurld t!( ::.lienee. living with HIF in A1atabdel~ntd, :Ziillbalnve (:-\mslenJam, 1 ~97). See abn Cl.Jdterty .md t-\SStl:iute~. '1'1!,~ rol~.: (.I sriyma ttn..i discrimiualhm in incteasin.tJ the Vlllllcra/JiliLy i~{ childrr11 awl !ftJuth
A
;,__;,.:.Jl!Ve an·ultnf
n
u:d l \ll.-1.Jl)!>: l'!)JOrl UlllJt1rtiL·iptliUrlJ \\'Orblwps (Arcadia, South /\frica, 20U] ), S_ I ,lt's never as ca0j-' as c\BC: understandings of AIDS in Botfm.1una,' tlfri,'W1 journal ;il))S He~,·aJc!!, 1 ( 2002), 1 10 is u petH.--'lriJtlflg analysls of the couiltct between moral anJ kdi S:..·c a!su ~--\. \'VtJlf, '/\fDS, mmality and iHdlgeuou.s of e::exua1ly rransn:lit" (~f.fi;(
tctl
in southtrn J\frica,' Ajl-ikn
~j_;ectnlm,
36 (2001'L 9/'-107; C
Yamba, ·coslllulogies
in turmoJi: wi1chfindi11g and AfD.S in Cl1iawa, Lambia,' Ajiic11. 67 I l 'JIJ7), 2.00--21. On im.hgcnous mcdlcioe. :>ee H. King, Collahoralion 1vith traditional healer,~ in H1VIA1D) preve11lion m-d care ill .~uh~Salwn111 _4jrLa. aliterdtwe review (1~enc:va, 2000). Fur Clin0Iian and I\Juslim L.Y. Sidnlu, and orber~, journ:;ys of j(tifh: dum li~bnsed rcspuJiscs to countries (Pielermarit:t.btJrg, 2U(J2 J; lsl
206 Further Reading
J 0 NGOs b the Evolution
Care
N. Kalceba, \if: miss you ali (Har.ace. J 99!) describes llh' crigins of T:\SO; tLl'.i iw lurgdy rtprintL:d in E. S. Craddock. and oHlt~rs (ed~l. un awl AIDS in .rifriut: beyond tuiUCIIIIL'WlriU r\1/\, ch. 19. See olso ]. Hmnplon. with MDS: Th,: (T,~SOI. Uganda (LonJcHJ, 19'l0) l'aralld and ll. Kerouedan, Filling tht: gaps: care and Si!pport j(n 1 9'::15 ); V.C. f..!ouli, /ill against 1.-ilDS: tht' Corperbdt Education PrtJier:t. larnhia 19'}.2). For ·women's organlsalions. see C. BayHcs, J. Bujra, ~1w.l other,,, ·UDS. and wndef 111 J.frim.· i\JliH llln::.aJJia aud. Zalllbia (London. 2lHHl): CF. '\\'omen anli /\J !).:) in Africa: experience df the Socidy tf_~r VVome11 and AIDS iil Afrinl, South ;1friwn ft'Hntt?l ej Tntanatimu!l ['~tfnirs. 7. 2 (\\'inter 2000}, )9 --66. stuUics of family care indude j.K. i\narfi. 'The condition aud Cl.l.lt' ut' AIDS \'id!ms in E. K~tjUn.l, ligmaU:::aiion nl ill Niz,eria,· 1] '7- 26; J. C1ruber w!d lvJ. Ca!Tr..::y. 'JHV/AIDS \VHO:CPL-\, Rcl'ieni .~IX IJIV,~ :1IDS h,,/uc (art: pnr in Un,mda and Zambia I(~c:nCiii:l, 19':) 1'): K. l-LJllsen, G. and otht:rs, 'Thb co:,t of homf·-h:1'<'d care fur HIV/AIDS patients in Zimbdlnve,' llllJSCure. 10 ~1~)9bi, 751 9: G \\,oelk, H. Jackson, and. othcrs Du we car·e? The L'L1st aud c~f cuttmwnity il!l/1/t bused t.:(J(e f/Jr H!t'/AIJJS putienrs nnd their CtJnHIJitnitics in %imbulnv.: {I lan1re, (TL-..Li\lDS, Reaching out. scnling up: do lit ca.'>e stwii£~s of home and community care jor awl by people '.Fith Hfll/Jl!JS (Ccncva. 200 i l; C 'Hunum rights and ethics in the cuntext uf home bi-i0eJ rare in Botsw.-tll£:1,' Pula. 1 J I
24!-8.
Th.: bbi introduction to pdllitJiivc lermjna!
lHJille-ba~ed
can~ is S. Ramsay. 'Le<:-Jding palliative cure.,' Lancet, 3b2 (2003). 18] 2 -1 ), on U;;:mch;.
th(~ \:\UY
ln
ll Death b the Household The ::;cale uf mortality is aualysed in R. Dorrmgtun, n. Buurnc, at1d .-,lhCiS. The impacL tif llJV/Jfl)S an adult 11Wft£1lily in South 2orn l. Jb impuci on beliefs and funeral prddices is examined in D. Durhc.un 'Func1i1ls and !he public space uf sc!ltiment in Botsl.vanu,' journal of Soutiwm ilfrican Studies. 28 (2000), 777-9 S: C. Nziokd, 'The social meanings of death fnnu HlV/AIDS: an African interpretative view'. Cultun_', l-ieal1l1 and 1 (1002), 1-- 1~1-. A m<Jjor study of the household impuci of demh is G.ll.R. Ruga1ema. trwrtt~lit!-i as entitlement .f(diure: iHIJS and Lhc cri:,h; (d nm;llivelllwods in a 'llmzwtiml villafJI! (PhD the:,is, lll:)titut-e nf S;Khll Studies, The H..1gue, 199Y: publishf'd in ldaasrricht). S~e abo his jonrney inw !he impact of HIV/ AIDS in soulherl! Africc.:.,' Revierv oj (.2\)UtlJ, 537--45. This should be cornpared ,,vitll D. l\.lathcr, C. Dunovan, es tn adult mortality ln rural sub Saharar~ Afnca' (200-:l.:
:1frio!'.s orphan crisis {2nd (jdn. 200 3 J is a uccuuuL llv1onasch and J.T. Bucnua, 'OrpbanhooJ anJ in 'nt}-~.dn;lran _·\frica: <:In of national sur>/eys from 40 countries,' AJDS, plcment 2. SSS--65: L. S. Lyo11. anJ uthers, 'Tbe influence ,1f on"""""""' schooling and labour: evidence fron1 sub-S
S. l~regsun, B. and dtht;t·s, 'Prokctious of tl-h.' magnitude ()f lh1: BiV, tHUS epitlemic ill southern Aftktc' io Vdliteside (cd.), ilt!f!lkatiuns of .ilJIS /(Jr denwytophu and policy ill .~ouiltem ~lf'rim tFidermiJntL.lmrg, 1998) is hdpfui lo conWding populatiou The mn~t thortghtful or the duornsdav forCCUS10 i~ Jt \·VaaL 'Hcn:v will ltun:::o:form AJdcan governance( ..:l_lri~·un/iftt.in,.:!U2 ~200)). I-23.
Alatures Cnrrt~lll .:sthu
.!.00 ~ ~>Vere puh!Jshed in
E.C c;nxn. Er'lhinkiug AIDS preFentiou: lmminu j'i·mn successes in cullllirics IS <JH cAcdlent introduc!iun J-o evet~ts iu Uganda, alrlwugh c: strong polemiLLJ! ::-,ce ;1bo the rlNic\1..' by f_C. Caldvvell it1 Poplliation,nul DrvrlDplllt'IJt Rr:vinv. 30 (2UO-±), l '59 \llo1hLT explanation in terms uf behavioural chang.:.-, i~ H.L. Stoneburuer ~H1d D. Lu~\,-Bccl, 'PopulC~pticism LXprL·ssed iit \Vmver, D. .Servvuddd, and olh..:l_S, ''\'rend:, iu l-llV J pr~~~<-dt.~nce not reflect trends ill in rn.aturc: epiJemic~: daia from the Rakal populaUon-ba:,cd ilgand.::.' AlDS, 11 (1997), 1023--30. The lu::ther sccpLicism awli!Lmced in ld\J 3 },
2005 h.1d
lhJ! bet'n puLlbhed at the Hmc of writiug. E\'id,::Jce uf prevalence lkdiw: else\'VlJere is cotJtaiut..!d in K l1yU. . csnes. K.Ai. J\.lu~ondii, an.._{ HIV JHc\,uknce aud ri,:;k belwviuurs in Zumhia: ev1dence from surveillance and SL1l'vey:>,' /llDS, l S (200J LJ(J7-] 6; Ethiopia: Fcdcra.l of Hc:dih, ';\lOS cJH, 2t10±; l'. Bradshaw. A. l\:;ttifor. Lilhcr~. 'Tr~wis in youd: risk k)r J-HV, ln P. 'Sntdh African hL~alih n:vinv ::2U03/U--i' (2004}, ch. 10 t!J!lp;, chttpler also surveys cvidencl..! of behavioural d1<.Htg~. For Lhis ~ce i\1. Hunter, 'i\htsculimLies, multiple seAu<-tl pd: tncrs. and :-\IDS: the making anLi umnalung llf hoka ln KwaZulu-Nutai,' Trans/inmation, 5-t (_2iJ()--l ), lX3--S3. l,'ur ub::.tacle.s 1d chanl~e. ~c.c C. Campbell, 'l..:ttillfJ thr!;l die': \Vhjj HI VI AIDS imawmiou JntJfJIWJ!fnes /nil {Oxford, 2003). ludicalions ul coutinmng fHV expansion can be fuund cl!id1y in UNA.!DS reporls and rl1e .\tl."lc:Jn press. One lCVt~aling docunll'nl is RbputJ!iquc N.dlloual de Lutk l't)lltrc le SJU,-\. 'Plan ditcclenr 2002 ".200-1'
l
j
ContailliiJCnt of UN_c\1DS ;_:an ht: .follov\'Cd in its reports, beginning '.'Vith Proyrt'sS report 1946 -_l 997 llJSJS}. Tile impasse of the late 1 Y90s is dcdr in \Vl)rld Hank. COJ{jt·untlllg ,1fl)S: public pri-
'!'~1e iill!Ji.lCl ((~ent~I.'<-L
!New York. 19'17). of perinatal transmb~ion. Sl~e (;. \Valraven. NicolL aud ,JJhers, ''fb_e Hlfeclion 1m child lH.:dlth in sub-Saharan Africa,' Tropkal Aledicine allll flllenwtional ( 1996;. J-- 14. The dilemma fur i\flkan mothers is pictufcd in G. Seidd, '1\.•lakiug an infurmr:d choice: dLscourscs <.-md practices surrnundiug Lrcustfeeding ath1 AiDS.' Auerul,c iY i1998). bS-~1. /\nwug the ntany accounts of conilkl ove-r antirelroviHtb in Somb i\fric,a, see lL Schueidcr and Stein, 'Implementing A.JDS in pus!-<1partheid South :\frk;-.t,' S:'L\1, 32 M. "'A. illness": u of!';](_;(), governl1l(:l1l and medical aruund ;\IUS pc,Jicy in South ,\f'rka,' Honours tbcsis, of N(.ltal, Durht1n, 200 l (http //l.ro.. ~'v'\\' '11tcs/!vlbaliThe.sis.pdfJ; \'. vuu dcr Vlid, Africa divldcJ ngaln~! ,\HJS: d cris~;:, '" ".~d..-::·f:>hip,' in K.D. KrJtdhno.n and U.L. Lindaua (,::cb), AlD8and Soulh Ajrim: liw SOI:'iul !'..\.'pression (~r (Ba::,iug~tokc, ~004 ); N. Nutlrass, The I!W!itl ecunomy uf ,-11! 1,')' ill s,lwh A/1 ica For the Trealmenl Actiun Campuign, see fvl. Heywood, 'The pdce of dcniaJ und Z. Achnwt, 'The Trcatmeut Action Ciimpuigu. l:iiV/AHJS and t!Je Trausjormation, 5-1 (200~-), ?h- t-q. The eventual antirdroviral plun w;1:, Sourh L\frica, 'Opcu::ttiunal pld.n rur comprt·hensive HiV and _~\JJ)S C
208 Further Heudin[l treatment fur South ;Hrka, J ~j Nuvember 20CJ3' {htlp:/ 'l;'JW\v.gcn.'.ia 1iissues;'biv/careplan 19nnv03.htm). The fiJilurc to develop a vaccine is anat.muised in J. Collen, Shots in rht: dark: the f[Jr an AllJS vacdnc (New York. 200] ). F1~r antlretnn?ira! prugra.rmnes, lJ!\TAIDS, _t/"om tlJC edge: the p11rsuii in BoLswmw, S\mth ii)dca and L'iJwida Geneva, 2004); E. insights from Bots\vana's nalional ;mliretr~1viral programme,' Aids tlnulusis A]i-ka. December 2003, 5; S, Blo~'\:cr, E. Bodlne, and others. 'Tlw anti·· retroviral rollout tmd drug-resistant HlV in insights fl·om ernpidcai data anJ the~)retkal modds,' ~'ilDS, 19 (2005), 1-l·l. At the time uf tvriting, the rnost recent cuntincntal ddta on antiV/HO, "' J 5" progress rtporL, December 2004'
/1.11·ican t'>Jational l\mgre~s of South Africa 7 3, KO. JCI2. l-±2-4, H 6 Agdmctuya 1 OS ,\ids Counseling Trust 101 Abva-Ibdm Slate SO i\!gerid 95 Amln, 1
.25
,\nani. I K. J U2· Andc:rsun, H. L2·1 Anglo :\.ml~ric~u1 C;-lrporotion 12 3, 14b Angol<.l j_3 Anikul
J··.
Bayley. 1\ 37 Beitbrid~e 1 Y Renin .54, 90-1, l 39, 13'5 Bemw Sl-ak 56, J 03, ] 08-9 Berbera!i l 5-16 Bila, K2, J :15. 1-12. 148. ! 51 l Brazzaville J 2. l 'i. I 7. C7 breast-feeding 141-2 Bufuml>ira 2 S Bujumbura 12, 21-2 I\ukolm 24 Bulawayo 38-9 burial socieLie:s 11 S Burkina Fasn S2, S S, 7b, 80, 89. -1 O'J, 121,
31
Ba!alJyckubo, l}_·u YU
BanwL:o 55 !lande1. H. K. ol Baugui .15-1 ?, 62. 141 Buragwanath hospital 44, 66 !l<Jrclays li;mk 114
burn--out 77 Bllrundi J Y 22. 62, 111 Busia 2H But are 2 \_ Cameruun 4-S . .15-_l~, 67, 72, HH, l36, 14'1. 153 cancer 61, 65, 1--::1:0 Ca_pe Coast ;- 5 Capc'l\n.vu ~uS-7, J33, t-i.S Carael. M. 16 Gil"C
caregivers 7S. 8 S. ()7, 1U9-·l0, 11 S community-based lH;tne care 1 OS- l] family 98. 102-1 hospital-based hr,me care t OS in gem:ral 9 B-111
20')
21 U Index palliative 6!, ~ 3-4, 1 11 St!i~ also orpha11s Carletonville 46, 13,. Casamance 5? Cathollc Aids Action 108, 1] 3 Centers for Disease Control ] 3, J 51 Central .:\frican R,~public l 5-8, 74, ] Chad 16, 55, 7 2 Chiawa 92 Chlduo. A. 66 Cl1ih.ankuta hospital l(i'J-6 Children HfV prevalence 14. -i 7. J 36 stigmatization 87-8, !18-19 see also orphans Chiluba, F. 96 Chinrw a<:'.a. A l 0.3 -± c:hiredzi -~ 1
Chisttpt:, B. G 9 5 Chiwez:J, D. l 51 Chobe 39 chulera 59, 66, SO, 90 Chrblianity, and H!V 74, 9+-7, 105-3, J J 1 circurnclsion, and IUV J 2. 2:J. JL 42. 45, ·18, 55, 62. HO L'Hb:ens AiJ::. Survival Trust J 51 commen:ial sex, sa prosLitutitHl Concern 07
condom.'::> ln ln in iu
Easlern Africa 30, 71, 12:)-_)() gent:ral 70, H6-7, 96, 134 Southern ,\fi'ica ,10, J6. Ll2-5 \Vest Africa 53-4, 134--5
in \.Vcstern Equatorial Africa l_S
confert:tlces Atlanta 68 Bangkok 1:10 Barcelona 1 5) Brussl._~ls 68 Durban 9L 1.J6 Sruckholm 79, lli1 Vancouver 1·13, 148 conJidentiality 74-5 Congo, Democratic Republic of_] 7. l 0-J S. 67, 92, 99, IJ 3-H, 120. l >7, !39 C·;HguBrazzaville 15, !7, 67, 72, 87, 90.92 Copperbelt 36-8, 41 Cq-;.pcrbdt Health Education Project 100 rorruprinn 10 I. l 5], l 56 COte d'Ivoire 48-9, 52-6, 67, 72, }()1 .. 2, 109, 135, 137.142, 1489, 15.1, 156 Cotnnou 5-1-5, ] -±0 courtseliug 76-7. 8:1-·S, YIJ- [ 00 see also vulullt-ary counseling and tesiiug Cryptococcal meningitis 12-J 3, 15, 21 Dakar 57, HJ
Index 211 Dares S;·Jl~imn 26, 85 Ihnvn of Hope 1 S 5 death 112-16. 121. l5'! Debsvvana 14:8 De Cock, K. 1 5 l demography see population denial ill, 84 Dessic 31 deWacL 1\.122 tlialTIJOca 12- l l. 15, 23, .2 5. B!. 8), 91 Di(mf, A. 67, 7] Dire Davvn 3 l disclosure 85-·7, 89, 11:4: dit>crimination set' ~tigma Dlamini. G. HY doctors bl. (A:, 67. 7J-8. HO, b9-·93. 11--t 152 alstJ indigenous healers Douala :1, 15, 52 Drobo, Kofl 8'!-90 drug resistance 1-±1, l-±8--9, 15.1, 15() Durban 45 6. 89. lJ l. U 1 Durban Declanlf.ion 91
Ebola Fl. 66 Electricity Supply Company 74 epidemic diseuse 59-bO. J 56 Esmail. !J. 144 Espuir l 04 Usu- \t\lilliams, E. !_ 0 l Ethiopia 5, 8, 1 ?3, 29 32, 62. 6'7. 7 2; 82-1. 92, 91-5, 98-9, 107 8. l j i. 121, 131, 134, 153, 155 Eurupean i Inion 79 Family Aid::; Caring T.-m.:t 106, ] 08, l l 0 famine 121-2 Farm ()rphan Supp(Jrl Tntd 12{) feachem, R. 159 financial aiJ for HfV 60, 71. 78, 149-SU. t57 Francevillc 15 Frandslo\-vn YJ, 4J funerals ll3-l5. 121. l2l. lB Cabon 15, 17-18, 4-Y, 92, f 53 c;aborone _~$9, 41' J 1 .3, 142 nallo. H. Cl. 149 Gambia 49. 72 Gambonl<J l 5-16 Gates Foundation J -'19, J 52 gC'nder see \1\Wme-n Ghana 48, 52, 5'1, 7'5, IW.-3, lOS, 108, 132, 135 Uiobal fnnd for Aids, Tuberculosi.s and l\Jalaria 149-50. 152-_1, 159 Clubdi Programme on Aids 6~-73. 76-9, 101, 126. 139
lab.:Ynr migration, and HIV .~l. 27 .. 'J, 32-6, '11-2, H-5, 52 3, '15·7, 61 2, l2l Lagos 56, 76. lUO Lenganc, C:. 10~ lepwsy 66, S7-8, 138 Lesotho 4), B3, 121 124. 130 Liberia _I 3? Libreville 1 S, S 2 LHongwe ~10 I, 132
Hurungwe 38 hybridily 92-3
iddir societies 1 l:)
india 60, ~U indlgenuus hl'i·der~ B9-9J, J 55 influenzJ -l 6, 50, 98, 112 injeclJons 1-l, 49, 61 insuranc·e i 13 Jringa 17 Islam. and t-llV 1L 4B, 55
Kamachnmn 2!:1-
?32, 95-6
Lisal<J '"* Lissouba, P. 90
Livingstone ) I
212 linlex
lwl,:x 213
Lobatst~ 41 Luamho 1\.,!d..Ja,Jt 'Franco· 8 J -2 Ll!luiCre Actiox, 1-l-i Luo. N. I (Jl Luu irlbc 29, 92 Luo;<,b 37-8. <10. b7. 1 IJ ll. no. 1346 Lutaaya, P. 82
Lttweero
~5,
117
i\. 23, 26 Lyantullde 2 5 Lwc~gaba,
i\,1adani, ,"\hbasi 95 A!allicr. H. 68 lv1akgoba, J\1. ~JO, 146 ~vJiil6V'.1 j 3)-44, 60, ()j 71, t\2-), 91, ~JL), 103--1, ](J6, 113, 1 17. 120-2. J )2, l H-5. 152, 155 ~lulewosi, j. I 'i2 ~\la!i 4~), 5"'~' 55~6, 66. 89, 95. 102 malnutrition ~-Hh1 HIV h3, 120-.~ ~bnw ·Yemo Hosvilal 12-1-:1:, 6?3 Mandda. N. 67, H 5, H7 ?vlanicaldnd J8---±f} ~l
1\ 1ombasa 2 7 · 8 l'v1ontaguier :L l 50 ~lov1i 55 mmalislk explanations XU. 8R. qU-7. 1 30 I1llitnr trausporL and Hf\T l S--16. 21-::l. 27-9, ll, J9-42, cJ.'J, 612, /ll Mozambique 42-3 45, i07, 121 l'l7 Mulago hospital 2 S-6. bh, 77, ] 16 Museveni, J. 119 i\-[useveni. Y. K. 67', 7L Sl, :n. 96. 126-30 /.lutarc 106 1\!wangi, M. 97 i\Iwanza 27, 73, l-::iO
Nmrubi 12, J 6, 27 9, 62, I 07, l H Nakuru 28 Nomibia '12-1. %, 108 118, !21, H2. !55 Nanyllnga, Y<m.ranina 90 National Aids Convention of South Urica 73.
75. lH
National i\s::.ociutidn of People vdth AiJ:s 1-±4-5 l'-LJiiona! Community of \'\ 7nmcu Li"Fidg \Vi1 b_ /\ids J 0 J, 14+ N<.Jzareth 31 Nchalo -11 Ndlovu, i\-1. 89 Ndola 17. 40, 55, JU6. lOS, l )0, L16, l40 NJunji, 1\. 8·J-5 Network uf Afric
N(;O"
in Eastern Afrlcu 7]. 7Y
in general 78, 98-ll j in South~.:rn A!AiG.~ H.3 in \.Vest i\fricl ?1 Nguyen, \'inh-K!m S 3 Niarr1ey 55 Nlc1ri 15 Niger 55-6 Nigeri<:J "-l::J, 52, 56~7, 72, 7"0, 81. 93. 95. YK, JOO, JU3, lil8-'l, 12.3. l6, 15-l-5 Nigerian 1\Iedicai Association 9 1 N'-m--Governmenlul Orgunizatwns .'>ee i
Obasanju. 0. l. 54 Okware, S. 2>, 2), bb-7. I, 7'1 Organislltion fur Social Services fur .-\ids 1d7 mphans 11 115--21, 115. 136, 152,
159
CbL_akdii
·:L~
Osotinh:hln. B. O!nh.po 10), 108~9 Otunga !\t 96 uuagttduugou 55 OucSS(J 1 S {h:ambtJ 42 pi10etli·~ expl~rieuce 0~-4.
1U9-11. 115
pi.tediatric Aids ste ~·htldren pe(1pll" !Jving with lli\1/Alds
88, 1il7, 131-2. 131 5. l j<)_ 133 Tasintlw 1 00~ l T!ISU 63, 75-(>, 85. 'Jl, ')~-1110 Jill, lOb. 118-19. 150 Tu!tui Hulilc CtrC Services l OH Tunitop~ Balogun Jushm, 00 termlual care 6-±, 8 3 4, I t l testing for HTV 70, 7-:l.-5, 84 5, 117 131, 15 l counseling und kstlng 60. 62. !29, l-10, 142.
14A, 151 IIeakcs: and "l herapists Against Aids 93 tramh1sion 14, 26, 57, 61, G7, 69-70 Treatment Action Cmnp<:1ign 1-±4-7, 15+·5 Tshabulala-Msimang, M. 73. 115-7, 154 Tsholotshu 39 tuberculosis 9, 12 14-15, 21, 37, 42, 45. SY, 142, 152
Uganda 8, 12, l~J ..:U--6, h7, ?l-1, 81-3. 88, 93-6, 98-lUl' 104-6, 110-ll, 11517, ll9-2i, 12b-32, l_)S-·6. 141-2, 118 5, 153 Uganda Aids Information Ccntn: J 50 Uganda VVoman':-; Eil'ort to Save Orphans l i 9 UNAIDS 102,106, lHl, l2l, 155_ 138-9, 141, HB-9. 151-2 llNDF 7Y UNICEF 79, 120 United Kingdom 140, l.:l:S, lSl-:Z
United States of America 3. 5. 10-12, 4 :L 60. 65, 71:i, 90. 129 10, l H-5 Uniled States Bureau of the Cens:Lis 124 University Teaching HospitaL Lusaka 67. 100 urbani.satiun anJ HIV 16, 21-2, 27-8, 30--2., 41, 52. liO !JSAlll 79 Va~il Aids Home.ll<:~sed Care lOB vaccines J 38, 149-50, 157 vaccination 7 ·virginity testing Y"l voluntary counseling and testing l 50-2 \-V~~lvis Bay 42 WAJ\lATA 1U7 w;,rfarc, and HfV 1 8. l3 7 wasting 12, 15, 23. 23 Were, B. 101 Whiteside, A. 122
\i\'idovvs 29. :03--t 116
H-'iudhock 42 witchcraft 23, S2. ~..2 women acti\'isrn by 79, 9!J-lt)l, 1{)6 14± economic situation 16, 29 30. 4:0. '18, 52-3, 62-3, 86 gender conUict 50, 8 S-7 H1V prevt:Jlenct: in Eastern ~--\!loh:a 25-3 l26-l2, LlS-6 l.HV prevalence in SoUlhern Albea 36-8, 40-l, 4S-7, 130-fi I-HV prevalence in \:Vest Africa 'J9, 52-6, .132, 136 lilV prevalence in \-Vestern E(lUalori<:~l