Lessons from South Africa's experience of HIV/AIDS

Abstract

View Large Image Figure ViewerDownload Hi-res image Download (PPT)View Large Image Figure ViewerDownload Hi-res image Download (PPT)During the late 1990s while living in Zambia, I saw the devastating effect HIV/AIDS was having on individuals, families, and communities. On a trip to the northern province, I met some young Zambians and was stunned when one man emphatically declared, “Mbeki says HIV doesn't cause AIDS, so why should I wear a condom anyway?” Until that moment, I hadn't understood the ripple effect of South Africa's policy on individual behaviour elsewhere, and since then I've been seeking to understand this failure of the South African people to use their intelligence and relative wealth to more effectively respond to the HIV/AIDS crisis.Little was done by the Apartheid government during the early years of the epidemic. In Pieter Fourie's The Political Management of HIV and AIDS in South Africa, he describes this as a silent phase when “no comprehensive AIDS policies or public policies were drafted”. The initial characterisation of HIV/AIDS as only affecting a few vulnerable groups stigmatised the disease and obstructed the development of any coherent policy. No policymakers anticipated the effect that the structural drivers of the virus—poverty, gender inequality, and violence—would have in catalysing the spread of HIV. In 1990, the martyred African National Congress (ANC) leader Chris Hani spoke presciently at the Maputo AIDS Conference: “We cannot allow the AIDS epidemic to ruin the realisation of our dreams.” As Didier Fassin suggests, in When Bodies Remember: Experiences and Politics of AIDS in South Africa, Hani would have been in line to succeed Mandela, had he not been slain.As the apartheid system began to unravel in the early 1990s, a National AIDS Plan was launched and subsequently adopted by the ANC a few months after they assumed office. In 1994, HIV prevalence was 7·6% among women attending antenatal care clinics with a national prevalence at 1·8%. But the alarm bells that should have been ringing were silent, leaving most of the population unaware of the threat and allowing the country's political leaders to act complacently and fail to realise the extent of the impending crisis.South Africa's liberation from apartheid, in 1994, while a time of great hope, paradoxically became the catalyst for the rapid spread of HIV infection. Racial segregation, entrenched gender inequality, and the disparity in the provision of education and health were a few of the factors that left South African society unprepared for the onslaught of HIV/AIDS. The freedom of movement that ensued from the abolition of the homelands travel bans accelerated the transmission of HIV. Fassin's personal ethnography elucidates how in this postconflict situation the overwhelming popular allegiance to liberating “national” leaders impeded any widespread accountability about the implementation of policies.This lack of public accountability led to a series of shocking scandals in AIDS policymaking during Nelson Mandela's presidency. Fourie and Fassin describe the 1996 Sarafina II scandal when the government spent a fifth of the national AIDS budget on a contract for a theatre company to produce a show with questionable public-health messages. A year later, the then Vice-President Thabo Mbeki used his office to publically push for the expedited approval of a homegrown African remedy, Virodene, through South Africa's national drug regulatory authority. The authority subsequently deemed the drug “unfit for human consumption”. Mbeki's attempt to use his political power to over-ride the scientific governance of public-health policy tragically foreshadows his treacherous alliance with the AIDS denialist movement when he became President.In the final scandal of the Mandela presidency, in 1998, the government refused to provide zidovudine to pregnant women. Fassin quotes Glenda Gray, who leads a clinical research unit at a hospital in Soweto, as saying “The government is sleeping while Rome burns.” Fourie states that the main argument used by the government at this time was that it “simply was not cost effective to purchase expensive drugs”. Cost would again be used during Mbeki's presidency as a rationale for blocking access to highly active antiretroviral therapy. By the end of Mandela's presidency, national prevalence of HIV among adults had climbed to 11·7%. Despite his questionable track record on governance of AIDS policy, Mbeki assumed office. I wonder, in retrospect, if South Africans would have elected Mbeki had they known the effect of his AIDS policies on their lives?The extraordinary influence that the anti-science denialist movement has had on the thinking and policies of President Mbeki and former Minister of Health Mantombazana Tshabalala-Msimang is cogently detailed in Nicoli Nattrass's Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa. This book gives the clearest historical record of the ongoing battle against denialism in South Africa and describes the creation of the Treatment Action Campaign (TAC) led by Zackie Achmat. Although TAC waged successful campaigns to pressure pharmaceutical companies to lower their drug prices, the group's major battles would be waged against their own President, Health Minister, and government.Nattrass documents Mbeki's early exposure to denialist information and his personal investigation of the science of AIDS medicines: “Mbeki had already been convinced that mainstream science had not taken sufficient account of the AIDS denialist critique, hence he was poised to argue with orthodox scientists rather than seek their advice.” He aggressively promulgated his personal support of denialist theory in government policy, while disregarding the opinions of scientists in his own government. The battle of scientific reason against Mbeki's theories initially peaked, in 2000, at the International AIDS Conference in Durban. TAC mounted a Global March for Treatment Access to defend a science-based approach to government policy. Mbeki's infamous speech concluded, “As I listened and heard the whole story told about our country, it seemed to me that we could not blame everything on a single virus.” We all sat stunned on that chilly night. Sitting in the audience that night, I remember clarifying in my mind the urgent need to wage strong and persistent fact-based advocacy to hold Mbeki accountable.Just this year, after 7 long years of pressure from every possible source, Mbeki's government has finally begun to implement a comprehensive strategy to tackle HIV/AIDS. Effective advocacy was the key to this policy transformation. As we work together to contemplate the path to universal access to AIDS prevention, treatment, and care by 2010, we must learn from these horrendous experiences in South Africa. We must learn how to ensure bolder, smarter, and faster action, and we must learn from the best.The structure and function of the TAC advocacy network represents an important model. TAC's partnership with the AIDS Law Project mounted innovative lawsuits that activated the South African justice system and focused public attention on critical issues of public policy. TAC has also pioneered strong relations with AIDS activists in developed countries, which has led to joint international actions to accelerate political pressure on the pharmaceutical industry and the South African government. Underlying TAC's experience is the critical role that civil society has in working in solidarity with a global network of partners to create a transnational advocacy movement to ensure sound evidence-based policies are promulgated by governments and other external funders. Accountability on all fronts is an increasing challenge given the expansion of HIV/AIDS programmes and the huge influx of new donors, partners, aid mechanisms, and resources.Lessons from the experience of AIDS denialism in South Africa are applicable in other settings. For example, in my own country, the USA, many AIDS activists have been fighting the Bush administration's prevention policies that have been based on ideology at the expense of evidence-based prevention. These three books have reaffirmed my understanding and belief that strong, independent voices of accountability are essential for generating the political will to fully fund a science-based programme of interventions to prevent HIV transmission and treat people living with AIDS. With 1000 people needlessly dying each day in South Africa and another 7000 people dying daily in many other places worldwide, we must do better in the future than we have all done so far. Accountability now! During the late 1990s while living in Zambia, I saw the devastating effect HIV/AIDS was having on individuals, families, and communities. On a trip to the northern province, I met some young Zambians and was stunned when one man emphatically declared, “Mbeki says HIV doesn't cause AIDS, so why should I wear a condom anyway?” Until that moment, I hadn't understood the ripple effect of South Africa's policy on individual behaviour elsewhere, and since then I've been seeking to understand this failure of the South African people to use their intelligence and relative wealth to more effectively respond to the HIV/AIDS crisis. Little was done by the Apartheid government during the early years of the epidemic. In Pieter Fourie's The Political Management of HIV and AIDS in South Africa, he describes this as a silent phase when “no comprehensive AIDS policies or public policies were drafted”. The initial characterisation of HIV/AIDS as only affecting a few vulnerable groups stigmatised the disease and obstructed the development of any coherent policy. No policymakers anticipated the effect that the structural drivers of the virus—poverty, gender inequality, and violence—would have in catalysing the spread of HIV. In 1990, the martyred African National Congress (ANC) leader Chris Hani spoke presciently at the Maputo AIDS Conference: “We cannot allow the AIDS epidemic to ruin the realisation of our dreams.” As Didier Fassin suggests, in When Bodies Remember: Experiences and Politics of AIDS in South Africa, Hani would have been in line to succeed Mandela, had he not been slain. As the apartheid system began to unravel in the early 1990s, a National AIDS Plan was launched and subsequently adopted by the ANC a few months after they assumed office. In 1994, HIV prevalence was 7·6% among women attending antenatal care clinics with a national prevalence at 1·8%. But the alarm bells that should have been ringing were silent, leaving most of the population unaware of the threat and allowing the country's political leaders to act complacently and fail to realise the extent of the impending crisis. South Africa's liberation from apartheid, in 1994, while a time of great hope, paradoxically became the catalyst for the rapid spread of HIV infection. Racial segregation, entrenched gender inequality, and the disparity in the provision of education and health were a few of the factors that left South African society unprepared for the onslaught of HIV/AIDS. The freedom of movement that ensued from the abolition of the homelands travel bans accelerated the transmission of HIV. Fassin's personal ethnography elucidates how in this postconflict situation the overwhelming popular allegiance to liberating “national” leaders impeded any widespread accountability about the implementation of policies. This lack of public accountability led to a series of shocking scandals in AIDS policymaking during Nelson Mandela's presidency. Fourie and Fassin describe the 1996 Sarafina II scandal when the government spent a fifth of the national AIDS budget on a contract for a theatre company to produce a show with questionable public-health messages. A year later, the then Vice-President Thabo Mbeki used his office to publically push for the expedited approval of a homegrown African remedy, Virodene, through South Africa's national drug regulatory authority. The authority subsequently deemed the drug “unfit for human consumption”. Mbeki's attempt to use his political power to over-ride the scientific governance of public-health policy tragically foreshadows his treacherous alliance with the AIDS denialist movement when he became President. In the final scandal of the Mandela presidency, in 1998, the government refused to provide zidovudine to pregnant women. Fassin quotes Glenda Gray, who leads a clinical research unit at a hospital in Soweto, as saying “The government is sleeping while Rome burns.” Fourie states that the main argument used by the government at this time was that it “simply was not cost effective to purchase expensive drugs”. Cost would again be used during Mbeki's presidency as a rationale for blocking access to highly active antiretroviral therapy. By the end of Mandela's presidency, national prevalence of HIV among adults had climbed to 11·7%. Despite his questionable track record on governance of AIDS policy, Mbeki assumed office. I wonder, in retrospect, if South Africans would have elected Mbeki had they known the effect of his AIDS policies on their lives? The extraordinary influence that the anti-science denialist movement has had on the thinking and policies of President Mbeki and former Minister of Health Mantombazana Tshabalala-Msimang is cogently detailed in Nicoli Nattrass's Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa. This book gives the clearest historical record of the ongoing battle against denialism in South Africa and describes the creation of the Treatment Action Campaign (TAC) led by Zackie Achmat. Although TAC waged successful campaigns to pressure pharmaceutical companies to lower their drug prices, the group's major battles would be waged against their own President, Health Minister, and government. Nattrass documents Mbeki's early exposure to denialist information and his personal investigation of the science of AIDS medicines: “Mbeki had already been convinced that mainstream science had not taken sufficient account of the AIDS denialist critique, hence he was poised to argue with orthodox scientists rather than seek their advice.” He aggressively promulgated his personal support of denialist theory in government policy, while disregarding the opinions of scientists in his own government. The battle of scientific reason against Mbeki's theories initially peaked, in 2000, at the International AIDS Conference in Durban. TAC mounted a Global March for Treatment Access to defend a science-based approach to government policy. Mbeki's infamous speech concluded, “As I listened and heard the whole story told about our country, it seemed to me that we could not blame everything on a single virus.” We all sat stunned on that chilly night. Sitting in the audience that night, I remember clarifying in my mind the urgent need to wage strong and persistent fact-based advocacy to hold Mbeki accountable. Just this year, after 7 long years of pressure from every possible source, Mbeki's government has finally begun to implement a comprehensive strategy to tackle HIV/AIDS. Effective advocacy was the key to this policy transformation. As we work together to contemplate the path to universal access to AIDS prevention, treatment, and care by 2010, we must learn from these horrendous experiences in South Africa. We must learn how to ensure bolder, smarter, and faster action, and we must learn from the best. The structure and function of the TAC advocacy network represents an important model. TAC's partnership with the AIDS Law Project mounted innovative lawsuits that activated the South African justice system and focused public attention on critical issues of public policy. TAC has also pioneered strong relations with AIDS activists in developed countries, which has led to joint international actions to accelerate political pressure on the pharmaceutical industry and the South African government. Underlying TAC's experience is the critical role that civil society has in working in solidarity with a global network of partners to create a transnational advocacy movement to ensure sound evidence-based policies are promulgated by governments and other external funders. Accountability on all fronts is an increasing challenge given the expansion of HIV/AIDS programmes and the huge influx of new donors, partners, aid mechanisms, and resources. Lessons from the experience of AIDS denialism in South Africa are applicable in other settings. For example, in my own country, the USA, many AIDS activists have been fighting the Bush administration's prevention policies that have been based on ideology at the expense of evidence-based prevention. These three books have reaffirmed my understanding and belief that strong, independent voices of accountability are essential for generating the political will to fully fund a science-based programme of interventions to prevent HIV transmission and treat people living with AIDS. With 1000 people needlessly dying each day in South Africa and another 7000 people dying daily in many other places worldwide, we must do better in the future than we have all done so far. Accountability now!