Tribute to TAC at 20!

Written by Kerry Cullinan

The Treatment Action Campaign (TAC) turns 20 today – International Human Rights Day – and our history would be much poorer without them.

Living with HIV, Khayelitsha

The first time I saw people wearing the iconic Treatment Action Campaign (TAC) T-shirts emblazoned with the purple words “HIV positive”, I was shocked. Who were these people brave enough to shout out their status like this?

There was so much stigma attached to HIV that giving HIV a human face was precisely what South Africa needed and the T-shirts were my first introduction to the tactical brilliance that came to characterize many of the TAC’s actions.

Motivated by death

Death was the motivating factor for TAC’s birth. Ten days after anti-apartheid and gay activist Simon Nkoli died of AIDS, his friends including Zackie Achmat, pledged to set up the TAC to fight for affordable and quality treatment for all those with HIV.

At that stage, it had seemed that the struggle would be against pharmaceutical companies who were charging exorbitant prices for antiretroviral medicine. But it shockingly soon became apparent that one of the biggest struggles would be against the African Nation Congress (ANC) led government.

Before South Africa’s political liberation in 1994, there were only two sides: those with the apartheid regime and those against it. But once the ANC assumed power, the anti-apartheid coherence splintered into many different interest groups and the belief that the democratically elected government would protect and advance the interests and well-being of “the people” proved to be naive.

Patients with an undectable viral load are less likely to pass the infection onto others.

Thabo Mbeki’s infatuation with AIDS denialism was the first major indication that the party of Nelson Mandela would not necessarily care a damn about society’s most vulnerable, and it was immensely hard for anyone to go against the liberation movement that had been venerated for years and years and had almost assumed the status of a religion.

Time of dying

But it was a time of dying and those most affected were young people in the prime of their lives who knew that they had to fight with everything that they had in order to have any change of surviving.

Between 1997 and 2002, reported deaths increased by 57%, and deaths amongst those aged 25 to 49 years had increased by 116%, according to the SA Medical Research Council.

Initially, it was hard to believe that Mbeki had fallen for the AIDs denialists’ theories. In early 2000, fellow writer Anso Thom and I were commissioned by an international journal to write about how Mbeki was entertaining the discredited theory that HIV did not cause AIDS, proposing instead that poverty was causing people to die. We earnestly wrote about the effects of poverty on people’s health, unwilling to accept that Mbeki actually believed – as he later declared in Parliament – that “a virus cannot cause a syndrome” and that antiretroviral medicine was toxic.

Painful dilemma

The early 2000s was an immensely painful time – and one that posed a dilemma and risk for the TAC, as the majority of its members were also ANC supporters. Mbeki’s refusal to even acknowledge HIV, let alone to find ways to alleviate the suffering of those living with the virus, was the post-apartheid government’s first major public betrayal of ordinary South Africans.

Most citizens had a deep love for the party but, as in any relationship when love is rewarded with betrayal, Mbeki’s stance provoked rage, despair and bitterness. Erstwhile comrades become enemies over a matter of months. TAC leader Zackie Achmat was denounced as an agent of the US Central Intelligence Agency (CIA). Black TAC supporters were told that they were betraying the struggle and being manipulated by middle class leaders and foreigners.

TAC leaders knew that, in order to succeed, they had to build alliances around the call for access to medicine for all. Inside the country, they built key alliances with partners such as the Congress of SA Trade Unions (Cosatu) and Medicins sans Frontiers (MSF). MSF set up operations in Cape Town’s Khayelitsha township and Lusikisiki in rural Eastern Cape, and managed to get a few people in ARVs via clinical trials.

Excuse of cost

In 2000, results from a large study showed that just one single dose of the ARV Nevirapine given to pregnant women while in labour and to their babies shortly after birth, could cut the HIV transmission rate from around 30% to 13%.

Government could no longer use the excuse of cost, and the manufacturers of nevirapine, Boehringer Ingelheim, even offered it to government for free.

But there was another snag. Mbeki and his health minister, Manto Tshabalala-Msimang, preached that the medicine was poisonous (we still don’t know whether they really  believed this or were advancing hocus-pocus to avoid paying a massive ARV bill).

Eventually TAC – supported by Mark Heywood’s AIDS Law Centre (an early version of Section27) – resorted to litigation to force government to provide pregnant, HIV positive women and their babies with nevirapine.

Many were shocked that TAC would take the democratic government to court – but it won the case and in 2002, government was ordered to start rolling out the provision of nevirapine.

Vuyiseka Dubula

But prevention of mother-to-child HIV transmission also raised the question of ARVs for adults, deemed way too expensive to contemplate back then. I remember a young, angry Vuyiseka Dubula asking whether HIV positive women were simply “test tubes” for babies, to be discarded once their children had been born virus-free. Who was going to look after the babies born HIV negative once their mothers had died?

Dubula was part of a group of young black women in TAC – those most affected by HIV – who contested the leadership space, which had been dominated by gay men.

Explosion of quacks

ARVs cost something crazy like R10,000 a month and because virtually no one in the country could afford them, there was an explosion of quacks offering “immune boosters” and AIDS “cures”.

I was based in Durban, the epicentre of the world’s HIV epidemic. It was common to see skeletal young people propped up by their elderly parents making their way slowly through the streets to back offices occupied by these opportunists selling their concoctions.

A number of politicians, particularly Tshabalala-Msimang, developed improperly close relationships with these quacks such as Tine van der Maas, who offered beetroot and ginger as cures, and former truck driver Zeblon Gwala, who made a fortune from a concoction called Ubhejane.

Despite Cabinet approval of a comprehensive AIDS treatment plan that would offer free ARVs in all districts of the country in November 2003, years of foot-dragging followed. Tshabalala-Msimang, encouraged by Mbeki, did her best to elevate various herbal treatments and diets to the same level as ARVs, while Mbeki stressed the toxic side effects of ARVs.

Almost a martyr

But TAC was not to be deterred, and built alliances with international AIDS activists and joined a global campaign for cheaper ARVs. It also smuggled in supplies of generic ARVs from other countries and wealthier HIV positive people from the USA and Europe donated their ARVs to South Africans in the hope of at least keeping activists alive.

Achmat almost became a martyr for the cause as he refused to take ARVs until everyone had access to them. He started to get sicker and sicker.

“I thought I would die, but I also knew that hundreds of South Africans were dying. At least 600 South Africans a day were dying because of HIV and because the government was neglecting the issue,” said Achmat in a later interview for the 21 Icons.

TAC’s national congress at the end of 2003 unanimously voted for Achmat to take the medicine but he says that it was Nelson Mandela who ultimately persuaded him that he needed to save himself.

“[Mandela] put on this HIV T-shirt when he visited Khayelitsha Site C clinic. It was a few days before the ANC national conference in 2003 in Stellenbosch. That moment I realised that I could take my pills, because what he had done then was to take a stand against a party that he had given his life to,” said Achmat.

There’s that T shirt again, which symbolises so much about the TAC: it’s shock tactics, it’s ability to name the virus when no one else would and how it stood for people that society wanted to hide away. The TAC taught South Africans to stand up for what is morally right, no matter whether it meant taking on presidents or international pharmaceutical companies.  Our history would have been very different without them.

About the author

Kerry Cullinan

Kerry Cullinan is the Managing Editor at Health-e News Service. Follow her on Twitter @kerrycullinan11