On-line version ISSN 2309-8708
Psychol. Soc. n.39 Durban Jan. 2010
Debunking aids myths
School of Psychology University of KwaZulu-Natal Pietermaritzburg
Cullinan, K & Thom, A (eds) (2009) The virus, vitamins and vegetables: The South African HIV/AIDS mystery. Johannesburg: Jacana Media. ISBN 978-1-77009-691-2 pbk. Pages xvi + 211.
I read this remarkable book in the time between the soccer World Cup in July 2010 and the public sector strike in August 2010. These two events seemed to represent a synopsis of South Africa at present, capable on the one hand of world class delivery and excellence, and on the other hand complete lack of care and interest in the wellbeing of children and the sick. This also describes the history of the HIV/AIDS pandemic in South Africa. On the one hand, South African scientists have made an extraordinary contribution to HIV/AIDS. The remarkable microbicide breakthrough was announced at the International AIDS Conference recently; the first clinical trials of a South African HIV vaccine are about to start; and last year a group of South Africans was invited to Canada to help establish the Canadian HIV Vaccine Initiative, because of the great success of the South African equivalent. These events point to the extraordinary role of South Africans in the pioneering work on HIV/AIDS. But on the other hand, South Africa has been the polecat of the world because of the government's attitude to and stand on the treatment of HIV/AIDS. Sadly this book is about the shamefulness of South Africa in the HIV pandemic, rather than its successes. But just like apartheid atrocities, this is a story which must be told and the abuses exposed. This book does a remarkable job of the latter. The introductory chapter describes the book as giving an account of the "madness, sheer weirdness and despair of a decade with Mbeki and Tshabalala-Msimang" (px). It does this impressively.
This book is a careful, thorough and bold account of the South African government's response (or more accurately lack of response) to the HIV/AIDS pandemic during the Mbeki years. This is an edited book with contributions from fourteen people with extensive, hands-on experience in the field of HIV/AIDS in South. All of the authors were and are deeply invested in working in the field of HIV/AIDS, and talk with extensive personal experience. Some of them, especially Thys von Mollendorf and Zachie Achmat, were personally at the receiving end of much of the Mbeki-Msimang HIV madness, and effectively provide a personal testimony of their experiences.
It is no surprise that the common theme of the book is the exposure of the myths, negligence and atrocities regarding HIV/AIDS perpetrated by the health department at the time. But it covers a range of domains of the HIV pandemic, including mother-to-child transmission, the absurd "garlic, olive oil, lemons and beetroot" solution, the virodene scam, HIV in public hospitals and prisons, and the inevitable "vitamin seller". And of course the Treatment Action Campaign is a very central, and heroic, part of the book. The book is thorough, considered, full of detailed evidence for the argument presented, and very readable. But it is not a happy story.
In the midst of the tragic narrative which this book tells there is also a handful of truly remarkable people, whose insight, commitment and courage stand in stark contrast to the indifference and idiocy of the people who were responsible for the HIV atrocity in South Africa. These include Zachie Achmat, Nozizwe Routledge-Madlala and Thys von Mollendorf. It is striking that the worst offence committed by these political activists was that they refused to remain loyal to the stand taken by the ANC, Mbeki and the notorious Manta Tshabalala-Msimang. Claire Keeton, in her chapter on Nozizwe Routledge-Madlala, describes her as "one of the country's most outspoken and formidable leaders" (p194). And it was for her commitment, outspokenness and leadership in the vacuum of competent government leaders which earned her a dishonourable discharge from the health ministry.
I have worked as an academic in the field of HIV/AIDS for nearly two decades. In this time I have had the privilege of meeting and getting to know some of the people referred to in this book. Working in the HIV field as an academic and researcher, I have had an insider's perspective of many of the issues. Despite this I found much of the detail of what is told in this book shocking, surprising and almost incredible.
I hesitate to highlight any one chapter, but as an example of my surprise I can mention the chapter by Thys von Mollendorf, the then medical superintendent at Rob Ferreira hospital. As this chapter says, it is one thing for medics to be uninformed or misinformed about the results of scientific research on issues such as the effects (desired and toxic) of ARVs. It is quite another to be absolutely defiant of good scientific and medical practice in the treatment of HIV/AIDS. Yet this was the prescribed practice in this hospital. The chapter tells the detailed story of Manana, the provincial health minister, as an agent of death in her refusal to provide appropriate treatment for HIV infected people. In fact it shows that she was even unaware of the national guidelines on emergency treatment to prevent HIV prevention, and even insisted that medical staff act in contravention of these guidelines. When von Mollendorf approached her and the department of health because of his concern about the deteriorating standards of health, she accused him of being guilty of "gross misconduct" and "gross insubordination". But when the case against von Mollendorf went to court, "the judge described Manana's rule as 'tyrannical and dictatorial'" and the staff of the department of health "liars" (p87), and that "fraud and corruption reigned in the DoH in Mpumalanga." (p89). By the end of reading this chapter I could not help seeing Manana as one of the primary agents of death and a core perpetrator of human rights atrocities, and found myself hoping that the day would come when she would be publically accountable for inhuman actions she performed and decisions she took. These were details that I had never been aware of, despite working in the field of HIV/AIDS, and I found this chapter both enlightening and horrifying in its detail.
But I also have to admit that there were parts of what is revealed in some chapters that surprised me for very different reasons. One example is the politics of the TAC. I have always had the very highest regard for the TAC and for Zachie Achmat. If Mbeki and the health department were the demons on HIV in South Africa, the TAC were amongst the archangels, fighting as they were for the right of HIV infected people to have access to ARVs. A fair portion of the gains in public policy and access to treatment must be directly or indirectly the result of the work of the TAC. The TAC also did pioneering work on gender issues in HIV/AIDS. But alongside revealing the sterling work done by the TAC, Janine Stephen's chapter also gives an inside view of the struggles, tensions and conflicts within the TAC itself. But rather than detracting from the moral high ground that can rightly be claimed by the TAC, the chapter gave me a good sense of the human face of the struggle of these HIV advocates. This is another of the strengths of the book.
There are many other aspects of the book which I found fascinating, but I will mention only one. I was always, and still am, puzzled as to how someone of Mbeki's intellectual calibre could come to seriously believe some of the absurd myths of the AIDS dissidents and denialists. There always seemed to be something missing in the explanations offered. I was pleased to discover that I was not the only person with unanswered questions about Mbeki's stand on HIV/AIDS, and to see this very issue raised in some of the chapters. James Myburgh's chapter on the virodene saga, Michael Cherry's chapter on "The president's panel", and Pregs Govender's chapter on AIDS denialism offer some interesting answers. These include the "demon of white racism", Western science as an expression of "deeply entrenched and centuries-old white racist beliefs and concepts about Africans and black people" (p8), and taking on the "power of international capitalism" (p37). The question about Mbeki's denialism is never fully answered, but some interesting perspectives are offered.
Overall, this is an extraordinary book, giving a much needed, careful and detailed account of various aspects of the HIV/AIDS debacle in South Africa. It is story which has had to be told in this detail, much like the details told in the TRC. It covers a wide range of issues relevant to the pandemic in South Africa. In some ways it also captures some of the broader political issues and controversies since 1994. But it is not an enjoyable book. The government's response to HIV/AIDS post-1994 must be one of the most disappointing features of the new South Africa, and there are many. But this might be a good time to read the book, as we seem to be on the path to a new and more sensible approach to HIV/AIDS in the public health sector.