Shattered Dreams? An Oral History of the South African AIDS Epidemic (review)

This is a story of the South African AIDS epidemic told through oral histories with professional health workers. As such, it chooses the same method and focus as its American predecessor, AIDS Doctors: Voices from the Epidemic (Ronald Bayer and Gerald Oppenheimer, 2000). "The trajectory of the [later] book is not dissimilar though it begins almost a decade later" (6). And here begins the terrifying catalogue of events, beliefs, and decisions that mark the South African experience as exceptional. The first HIV cases in South Africa came in 1982 among the gay community, just like in the West. In 1990, less than 500 cases had been recorded in South Africa. Yet by 2004, about 5.5 million men, women, and children were HIV infected, and rates were snowballing. Other parts of the world (and as the book reveals, clinicians and politicians inside South Africa) already knew by the early 1990s exactly how devastating the unchecked virus could become. New antiretroviral (ART) drugs were transforming HIV into a chronic manageable condition in privileged nations from the mid-1990s. Incompetence in the postapartheid ministry of health and the decision of Nelson Mandela's successor President Thabo Mbeki to challenge the science of HIV and his refusal to make ART drugs available in public health care, until forced to do so under pressure in 2003, all contributed.

The story is told through the compelling oral histories of seventy-three doctors (forty-two white, fifteen Indian, sixteen black) and thirteen nurses (ten black, three white) working in Johannesburg, Cape Town, Durban, in the townships of Soweto and Khayelitsha, and in remote rural communities in KwaZulu Natal and the Eastern Cape, as well as health facilities of AngloGold mine operators. The introduction gives some details about the people interviewed from 2003—2005 during four visits to South Africa. This chapter then sets the public health context, including the devastating impact of other diseases like tuberculosis and syphilis that predated HIV (and went on to have a relationship to HIV acceleration and comorbidity); institutionalized racial inequality in service provision; and health staff training by skin color (reflected in the interviewee selection). Alongside came the disruptions of community life in fighting apartheid.

The six chapters that follow are chronological. "The Forgotten Epidemic" charts experiences of those treating white gay men infected in the 1980s. A minority of gay doctors shared the danger and formed some extraordinary social bonds, but gay men remained shunned, judged, invisible, and largely in denial. Chapter 2, "Facing AIDS," charts the emergence of AIDS in children and the overwhelming of the wider (black) heterosexual population. The language becomes highly emotive: "relentless," "tides," "ravaging" whole communities. Interviewees recount harrowing memories of their first patients. They then touch on topics like the scientific challenge, religion, stigma, neglect, and the profit motive of private health care. A nurse reports making her patients clean their own placenta at birth. The chapter ends with two key disasters: the story of the championing of Virodene as an African discovered wonder drug and the failures of the Sarafino II play that revealed a postapartheid government unable to accept criticism.

Chapter 3 describes the burden of AIDS and subsequent abuse of human rights by health practitioners. Patient denial, disclosure delays, and refusals fueled the epidemic's reproduction. Early AIDS clinics were positive and pioneering and examples like the Sinikithemba choir are mentioned briefly as community development models. Huge tensions in coexistence with traditional healers reveal a fascinating but rather one-sided story of this cultural minefield. The next chapter highlights rationing of health care by wealth and prognosis. From 1994 onward, ART dilemmas dominate the accounts: who gets drugs and who is even told they exist. But politics took control with accusations that doctors were set to "drug our people to death" (153). The ANC turned in on its own supporters. Chapter 5 shows how pockets of defiance were harnessed toward treatment activism and...