Shattered Dreams? An Oral History of the South African AIDS Epidemic PDF
Preview Shattered Dreams? An Oral History of the South African AIDS Epidemic
? Shattered Dreams This page intentionally left blank This page intentionally left blank ? Shattered Dreams An Oral History of the South African AIDS Epidemic Gerald M. Oppenheimer Ronald Bayer 1 2007 1 OxfordUniversityPress,Inc.,publishesworksthatfurther OxfordUniversity’sobjectiveofexcellence inresearch,scholarship,andeducation. Oxford NewYork Auckland CapeTown DaresSalaam HongKong Karachi KualaLumpur Madrid Melbourne MexicoCity Nairobi NewDelhi Shanghai Taipei Toronto Withofficesin Argentina Austria Brazil Chile CzechRepublic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore SouthKorea Switzerland Thailand Turkey Ukraine Vietnam Copyright#2007byOxfordUniversityPress,Inc. PublishedbyOxfordUniversityPress,Inc. 198MadisonAvenue,NewYork,NewYork10016 www.oup.com OxfordisaregisteredtrademarkofOxfordUniversityPress Allrightsreserved.Nopartofthispublicationmaybereproduced, storedinaretrievalsystem,ortransmitted,inanyformorbyanymeans, electronic,mechanical,photocopying,recording,orotherwise, withoutthepriorpermissionofOxfordUniversityPress. LibraryofCongressCataloging-in-PublicationData Oppenheimer,GeraldM. Shattereddreams?:anoralhistoryoftheSouthAfricanAIDSepidemic/ GeraldM.OppenheimerandRonaldBayer. p.;cm. Includesindex. ISBN978-0-19-530730-6 1. AIDS(Disease)—SouthAfrica—History. 2. Oralhistory—SouthAfrica. I. Bayer,Ronald. II. Title.[DNLM: 1. AcquiredImmunodeficiencySyndrome— history—SouthAfrica—Interview. 2. AcquiredImmunodeficiencySyndrome— history—SouthAfrica—PersonalNarratives. 3. HIVInfections—history—SouthAfrica— Interview. 4. HIVInfections—history—SouthAfrica—PersonalNarratives. 5. DiseaseOutbreaks— history—SouthAfrica—Interview. 6. DiseaseOutbreaks—history—SouthAfrica—PersonalNarratives. 7. History,20thCentury—SouthAfrica—Interview. 8. History,20thCentury—SouthAfrica— PersonalNarratives. 9. Nurses—SouthAfrica—Interview. 10. Nurses—SouthAfrica— PersonalNarratives. 11. Physicians—SouthAfrica—Interview. 12. Physicians— SouthAfrica—PersonalNarratives.WC503O62s2007] RA643.86.S6S5342007 614.5'9939200968—dc22 2006033303 9 8 7 6 5 4 3 2 1 PrintedintheUnitedStatesofAmerica onacid-freepaper To Mathilde Krim, Zena Stein, and Mervyn Susser for their enduring belief inscienceandtheirdeepcommitmenttohumanrightsandtheglobalstruggle against AIDS This page intentionally left blank ACKNOWLEDGMENTS This book would not have been possible without the extraordinary generosity of thedoctorsandnursestowhomweturnedinSouthAfrica.Inmakingtimetotell ustheirstoriesandinopeninguptheirworldsofwork,theyprovideduswithan unparalleled chance to learn about HIV/AIDS in South Africa. To their number, wewere able to add a small number of AIDS activists, who allowed us to under- stand the thread of AIDS-related protests going back tothe1980s. Aproject likethis alsotakes financialsupport.Webegan withgenerousgifts from the American Foundation for AIDS Research and the John M. Lloyd Foundation.Inaddition,oneofus(RB)receivedsupportfromtheNIMH-funded HIVCenterforClinicalandBehavioralStudiesattheNewYorkStatePsychiatric Institute.Whenitwascrucial,fundingalsocamefromtheRockefellerFoundation andtheNationalLibraryofMedicineoftheNationalInstitutesofHealth.Finally, we were privileged to spend a month in the summer of 2005 at the Rockefeller Foundation’s Study and Conference Center in Bellagio, Italy, where, in the most splendid setting, we were able todevote ourselvesto writing a substantial part of our manuscript. Towritethisbook required the support of many colleagues and friends. For assistingusinidentifyingthedoctorsandnursesweinterviewed,wewanttothank Alan Berkman, Gerald Friedland, Quarraisha and Salim Abdool Karim, and members of the Southern African HIV Clinicians Society. Robert Sember at Columbia University and Philippe Denis at the University of KwaZulu-Natal in Pietermaritzburg were both extremely helpful in answering questions about South Africanpoliticsandsociety.Forcarefullyreadingourmanuscriptandprovidingsage advice,wegratefullyacknowledgeTessaMarcusandShulaMarks.Andtoourwives, AnneStoneandJaneAlexander,weowemanythanksfortheirsupportaswelabored onthisbook. Finally,wemustthankNiTanyaNedd,whomasterfullymanagedourcomplex travelandinterviewscheduleandbecamethekeeperofourtapes,andLelaCooper, whodemonstrated,asshehasinthepast,thattranscribingtapedinterviewsisboth askillandanart.Last,wewanttoacknowledgetheextraordinaryworkofAlison Bateman-House, whose intelligence, knowledge, and managerial skills informed everystepofourmanuscriptpreparationaswebroughtthisbooktoaconclusion. This page intentionally left blank CONTENTS Introduction: AIDSand the Legacies of Apartheid 3 1 The Forgotten Epidemic 21 2 Facing AIDS: Denial, Indifference, andFear 43 3 The Burdens of AIDS: Treatment and Its Discontents 79 4 Limited Access 123 5 Defiance:Creating Islandsof Treatment 157 6 New Beginnings? 199 Notes 239 Biographical Notes 247 Index 253
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