This resource is hosted by the Nelson Mandela Centre of Memory, but was compiled and authored by Padraig O’Malley. It is the product of almost two decades of research and includes analyses, chronologies, historical documents, and interviews from the apartheid and post-apartheid eras.
TAC as a post-apartheid, rights-based and patient-driven movement
THE TREATMENT ACTION CAMPAIGN AND THE HISTORY OF RIGHTS-BASED, PATIENT-DRIVEN HIV/AIDS ACTIVISM IN SOUTH AFRICA
Research report no.29
University of KwaZulu-Natal Centre for Civil Society
pp. 19 - 21
Out and open in the streets:
TAC as a post-apartheid, rights-based and patient-driven movement
To talk about human rights but not mention treatment and that's basically like saying talk about other rights and [do] not talk about right to life, which is ridiculous.
Interview with Promise Mthembu70
In earlier sections of this Report I have tried to show how TAC shares historical continuities with late 1980s and early 1990s anti-apartheid gay rights activism such as the emphasis on universal human rights-based discourse and early openness of such activists about their HIV status. However, it is important to note that despite its roots in early AIDS activism in the late apartheid and transition eras TAC is also fundamentally a post-apartheid political creature, which has used entirely new political and legal spaces created in post-apartheid South Africa.
There are two main historical developments post 1994, which I wish to point to which have fundamentally contributed to TAC's emergence, agenda and the strategies it adopted: the development of a powerful combination of antiretroviral drug therapy (HIV treatment)71 and the adoption of South Africa's democratic Constitution enshrining socio-economic rights.
As has been discussed above, TAC was formed in 1998 by Achmat, partially in response to the death of a stalwart of the gay liberation movement, Simon Nkoli.
Simultaneously, the stoning to death of openly HIV positive AIDS activist Gugu Dlamini for revealing her HIV status mobilised HIV positive activists in the KwaZulu-Natal region, to begin lobbying for equal HIV treatment access, which in turn linked them with TAC simultaneously being formed by anti-apartheid, gay rights activists in Cape Town.72
TAC aimed to widen access to anti-retroviral drugs for prevention of mother-to-childtransmission (MTCT), post-exposure prophylaxis following sexual assault and for use in combination drug therapy. TAC is not entirely historically unique. Like the AIDS Consortium in the early 1990s, TAC is a broad-based network, which includes unions, churches, gay rights groups, health-workers and doctors. Also in common with the AIDS Consortium it frames its campaigns in terms of rights-based discourse. TAC has also used similar tactics, such as openness about HIV infection, litigation, and attracting media attention for its campaigns, albeit on a much grander scale involving mass-openness, the international media and the Constitutional Court. This demonstrates further the value of seeing recent events in the context of the history of AIDS activism in the first decade of the epidemic.
TAC's post-apartheid campaign for wider access to HIV treatment was necessitated by two factors blocking access to HIV treatment: pharmaceutical industry profiteering through protection of patent monopolies, and the rejection of the efficacy and safety of HIV treatment by several key figures in government, such as the President and Health Minister, due to their adherence to AIDS denialism.
The new, powerful and very expensive HIV treatment worked by suppressing viral replication and allowing for immune system recovery. This scientific breakthrough, which was announced in 1996, changed HIV from an irrevocable terminal illness to a manageable chronic condition in the wealthy Northern countries. However, the pharmaceutical industry kept the price of these medicines unaffordable in developing countries in the South with a high HIV prevalence, such as South Africa, through abusing their patent monopolies.
In 2001, the Pharmaceutical Manufacturers Association representing 47 multinational pharmaceutical companies took the South African government to court to block the passing of the Medicines Act of 1997, which would have allowed for the production and importation of cheaper generic essential medicines, such as antiretroviral drugs in South Africa. TAC supported the government in the case acting as 'friend of the court' and helped to mobilise local and international activist support and global public opinion in favour of the government.
Due to international public pressure and the negative perceptions the case generated about the pharmaceutical industry, the case was dropped. TAC subsequently successfully pursued action against industry abuse of patent monopolies to inflate prices at the Competition Commission against GlaxoSmithKline (which produces antiretrovirals such as AZT and 3TC) and Boehringer Ingelheim (which produces Nevirapine).
Wider treatment access was also blocked by the bitter and drawn-out struggle between government and TAC activists over government denialism and HIV treatment access, which lasted from 1999 to 2003. President Thabo Mbeki, supported by Health Minister Manto Tshabalala-Msimang, questioned HIV as the viral cause of AIDS, the accuracy of HIV tests, and the safety and efficacy of HIV treatment, a set of beliefs that AIDS activists referred to as denialism.73 This denialism was driven by Mbeki's belief that AIDS was a post-colonial, racist conspiracy to discredit African sexuality.74 Government endorsement of AIDS denialism, due to its rejection of the safety and efficacy of combination anti-retroviral drug therapy, was in turn a crucial factor blocking equal access to combination anti-HIV drug therapy for people living with HIV.75
While TAC may not be the first instance of rights-based, patient-driven AIDS activism in South African history, it is certainly historically unique in terms of its militancy. On the back of its success in forcing the government to roll out Nevirapine for prevention of MTCT, at its 2002 Congress TAC decided to push government to adopt a National Treatment Plan to roll out anti-retroviral combination drug therapy in the public sector. Through its trade union federation ally, the Congress of South African Trade Unions (COSATU), it forced its Plan onto the negotiating table of National Economic Development and Labour Council (NEDLAC), a major socio-economic policy negotiating forum involving government, labour, business and civil society. When government withdrew from the negotiations in 2003, TAC embarked on a civil disobedience campaign, where its members volunteered to be arrested for non-violent protest.76
TAC's militancy in the post-apartheid era, as expressed in its civil disobedience campaign can be partially explained by the fact that medical breakthroughs in treatment and prevention of HIV increased the stakes in fighting AIDS related discrimination. Whereas previous struggles were about confidentiality and equality, in the struggle for treatment life itself was at stake, which meant more radical strategies had to be adopted. In 1999, Cameron, by then a supreme court of appeals judge revealed his HIV positive status to protest at the fact that only a tiny minority of extremely wealthy people living with HIV, such as himself, could afford drugs: he had essentially bought something which he thought should be freely available to all, the right to live.77
For many TAC activists, fighting for the right to live through access to treatment made openness worth the risks it entailed. The brave openness of activists like Achmat and Justice Cameron put a 'human face' on the epidemic and made the arguments for treatment access as basic an appeal at an ethical level as 'a person dying of starvation asking you for bread'.78
But as Achmat argued from the outset, generation of compassion or pity has not been TAC's number one goal. It is the realisation of the right to life and health for HIV positive people, as equal citizens.79 Similarly, TAC is unique in its ability to use the post-apartheid Constitution, enshrining as it does socio-economic rights, such as the right to access to healthcare, as a powerful legal and political tool. A tool which it successfully used in a 2001 Constitutional Court challenge which forced the government to roll-out Nevirapine to prevent mother-tochild-transmission.80
At the time of writing, in November 2004, TAC had successfully forced the government to relent on developing a National Treatment Plan to provide anti-retrovirals in the public sector. Critics such as TAC argue that government appears to lack the political will to provide adequate infrastructure and human resource development required to rapidly roll-out the treatment and make the plan a success. Its most recent 'Right to Know Campaign' has also criticised the government for not being transparent about its patient targets and the timetable for the roll-out. Despite the roll-out's ongoing shortcomings, in forcing the government to develop a National Treatment Plan and being the roll-out of HIV treatment, TAC has been one of the most successful post-apartheid social movements.