The Treatment Action Campaign (TAC) puts a human face on the continuing HIV epidemic, and, perhaps more importantly, puts a human face on the constitutionally entrenched right to health more broadly. With over 8,000 volunteers in 192 branches, across seven of South Africa’s provinces, it also provides government, public health specialists and civil society with crucial information about the impact of failing health systems on ailing health and helps to keep us in touch with the lived reality of HIV. As Archbishop Desmond Tutu has passionately warned, “AIDS is not over”. UNAIDS estimates suggest that nearly 300,000 people die of AIDS-related causes every year in South Africa. As young South African human rights activists committed to transforming our country we make this plea: saving TAC means propping up our health system. Saving TAC means saving lives. By THABANG POOE & TIMOTHY FISH HODGSON.
In 1993, while our Constitution was still being negotiated and written and as our democracy was taking its first breaths, the Aids Law Project (ALP) was established as the first specialist legal organisation in sub-Saharan Africa aimed at providing legal assistance to HIV and AIDS which placed the protection of human rights at its core. Founded by Justice Edwin Cameron and the first home in AIDS activism for internationally acclaimed activists such as Zackie Achmat and Mark Heywood, the ALP went on to play a significant role in the fights with both President Mbeki’s shameful AIDS denialism and pharmaceutical companies’ rampant profiteering off of lifesaving antiretroviral treatments.
SECTION27, the re-launched ALP and our own employer, has continued and expanded this fight to include healthcare more broadly and some of the social determinants of health such as access to quality basic education, nutritious food and responsive and accountable governance.
We are powerless to do so without grassroots social movements such as TAC. We appeal to you to contribute to saving TAC.
HIV, the rainbow nation and the victories of TAC
In those heady early days of our constitutional democracy, we as young South Africans born in the late 80s were taught to hold hands and sing our new national anthem – the significance and meaning of which many of us did not understand – to usher in our new rainbow nation at schools across the country. Those of us fortunate enough to be born into families with the money that shielded us from the rampant HIV epidemic, which all the while was killing thousands upon thousands of our peers, lived a Madiba-inspired dream as the world looked on in wonder at the “miracle” of South Africa’s “peaceful” transition. We knew little or nothing of the HIV epidemic or the work of the handful of human rights lawyers in organisations like the ALP.
The HIV epidemic was a rude awakening for our country from this, The South African Dream, and the dangerous exceptionalism that accompanied the new South African identity we were constructing for ourselves. Many, we were told, were “born free”, but a quick look around into our townships and the deepest rural reaches of South Africa indicated that everywhere young South Africans remained tormented by the devastating un-freedoms of poverty and inequality and suffered under the blight of the HIV epidemic.
It took a brave little HIV positive boy, the now seldom-remembered Nkosi Johnson, to draw our attention to HIV epidemic. Nkosi gave AIDS in South Africa its first human face. Showing up Mbeki’s AIDS denialism for what it was, he pleaded with us, amidst enormous HIV-related stigma, “[c]are for us and accept us- we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else – don’t be afraid of us – we are all the same.”
It is difficult to forget Nkosi’s skeletal face and bony frame standing on stage and the 2001 International AIDS Conference filling his suit with pride and big heavy boots which our countries great liberators largely refused to fill. In a very visual representation of Thabo Mbeki’s denialism, he turned his back and left half way through Nkosi’s speech. Nelson Mandela, on the other hand, turned to face the epidemic by openly supporting and championing attempts to combat the epidemic; famously donning TAC’s trademark “HIV Positive” t-shirt in support of TAC’s efforts.
Nkosi had dreamed of a country in which children like him were cared for. One in which less children were forced to suffer the trauma of untreated HIV and the knowledge that they lived on borrowed time. He did not stand alone. TAC, formed in the late 90s largely by people living with HIV and members of existing organisations such as the ALP, was building momentum in its campaigns. Just over a year after Nkosi passed away, TAC won a historic victory against Mbeki’s denialism, when the Constitutional Court ordered the government to make Nevirapine – a single pill which prevented mother to child transmission of HIV – available for free at clinics and hospitals around the country. As a result, today mother to child transmission is down so significantly that the Minister of Health can realistically aim to eliminate it entirely. A combination of heroes like Nkosi and brave movements like TAC had saved thousands of children from the life Nkosi led.
Now acutely aware of the danger of AIDS, we moved up on through the ranks at our own schools. Though it dramatically reduced unnecessary suffering and preventable death, the provision of Nevirapine and later antiretrovirals at public healthcare facilities did not eliminate the stigma so beautifully expressed by Nkosi, which continues today. We sat through one Life Orientation lesson after another – still laden with deep stigma around HIV and, as a result, sex itself – with our teachers condescendingly encouraging us to follow the ABC: “Abstain, Be Faithful, Condomise”. The message was clear: don’t have sex. Sex means HIV. HIV means AIDS. AIDS means death.
AIDS is not over: TAC is still sorely needed
It is in this context that TAC continues to provide stigma-free Treatment Literacy, openly confronting and discussing sex with community members, throughout the country encouraging people to use condoms, test for HIV and understand their own disease which need no longer be life-threatening. Unperturbed by political pressure and persistent threats to their own and their families’ safety, TAC members also help to identify other more systemic problems in the health system which compromise the health of many South Africans. TAC members, who are largely HIV positive, unemployed, unpaid volunteers, take on significant risks on a daily basis simply to ensure that people across the country can access healthcare services they are owed by a Constitution which promises them a right to health.
As young human rights lawyers, we are constantly inspired by the commitment of TAC’s membership and leadership, who are our role models as social justice activists. Organisations as varied as SECTION27, Students for Law and Social Justice, Sonke Gender Justice, Social Justice Coalition and Equal Education have taken inspiration and recruited trained activists from the ranks of TAC. It is not an understatement to suggest that some of these organisations partially owe their existence and theories of change to TAC. TAC’s footprint reaches even further having inspired similar movements elsewhere in the African continent and pioneered movements and thinking on the use law in attainment of social justice throughout the world.
Our work at SECTION27, particularly litigation holding government to account for delivery of textbooks, clean toilets or emergency medical services, gets significant media attention. As the Oscar Pistorius and Dewani trials show, court cases make for good TV, but are alone insufficient for the attainment of systemic change in the criminal justice system. The same is true in litigation aimed at securing delivery of basic services such as healthcare. What often remains unsaid and under-acknowledged in the media is that we, as human rights lawyers, are and can only ever be catalysts for social change. Alone, the law is relatively blunt instrument for achieving social change. Any lasting social change that SECTION27 and similar NGOs, largely staffed by middle class lawyers, can contribute to achieving is impossible without social movements like TAC.
Organisations like TAC guide a large portion of our work from campaigns to fix the health care system in the Eastern Cape, to protecting the rights of Community Health Workers in the Free State, to ensuring the effective operation of the National Health Insurance pilot project in Gert Sibande, Mpumalanga.
TAC’s funding crisis: SAVE TAC, SAVE LIVES!
If he were alive today, Nkosi Johnson would be 25 years old. He would no doubt be a leader and a strong voice for change and social justice, particularly with regard to ongoing HIV-related deaths. Nkosi gave what little that he had of life to the cause of alleviating the suffering of people living with HIV in South Africa. TAC is at the forefront of continuing this fight today. But, like the home that Nkosi Johnson grew up in, TAC is in danger of having to close shop and needs to raise R10 million in order to prevent this from happening. The importance of TAC and the significance of its demise should not be underestimated.
We write as young human rights lawyers who work for SECTION27 to appeal to you to contribute to saving TAC and thereby assist in continuing to save lives. We call on our peers to support TAC. We cannot continue to live comfortable lives in middle-class jobs while others suffer. While we live the South African Dream, with all of its romance, contradictions and challenges, we must never fall into the same pattern of neglect, which proved so costly in those heady days at the beginning of our democracy.
Though what we young South Africans can commit may be determined by our own financial and personal circumstances, we must all take responsibility for ensuring that TAC is allowed to continue its work. If we don’t do it, who will? Many of the readers on this platform will, like us, as young professionals, already have a taxable income of over R200,000 per year. This places us in the top 15% of earners in the country already. We cannot ignore our moral responsibility to assist in transforming our country.
We have grown up with AIDS and its devastating effects all around us and must continue to fight against it. Our task is simple. We must save TAC. In doing, so we pick up the mantle from those who came before us, like Nelson Mandela and Nkosi Johnson, and secure something more important for the next generation of South Africans than trumped-up ideas of a rainbow nation: life. DM
Thabang Pooe and Tim Fish Hodgson are legal researchers at SECTION27 and former clerks of the South African Constitutional Court.
Photo: A patient lies in bed at the Hillcrest Aids Center in Durban, South Africa, 01 December 2011. More than 34 million people globally are suffering from the disease with South Africa having the highest number of people infected with HIV in the world. EPA/NIC BOTHMA