Denialism, Defiance and Durban

In 1999, the battle for HIV treatment took an unexpected turn. Speaking to the National Council of Provinces, President Mbeki questioned the safety and effectiveness of AZT, a well-established HIV medicine. ²⁰ Treatment activists were stunned. Baseless scepticism soon became a feature of the Mbeki presidency. Mbeki began challenging the scientific consensus around the disease, questioning whether HIV caused AIDS, while his Minister of Health, Manto Tshabalala-Msimang, promoted unproven remedies as alternatives for evidence-based treatments, following scientific quack and vitamin salesman Matthias Rath. Beetroots, vitamins and garlic, however, were no substitute for ARVs. AIDS denialism crippled the government’s response to the epidemic, severely restricting access to treatment.

In 2006, Stephen Lewis, the UN Secretary-General’s Special Envoy for HIV/AIDS in Africa famously called the South African approach “wrong, immoral, indefensible” with Tshabalala-Msimang in the audience. We now better understand the impact of the indefensible approach. According to researchers from Harvard University, more than 330,000 people died from HIV/AIDS due to the Mbeki government’s obstruction of ARVs, and at least 35,000 babies were born with HIV that could have been prevented between 2000 to 2005. ²¹

Without the work of treatment activists, it could have been worse. Developing campaign after campaign, TAC promoted HIV treatment literacy and, eventually, helped secure treatment for hundreds of thousands of people, saving countless lives. TAC members like Sipho Mthati, who developed the treatment education programme, fought on the front-lines against ignorance and stigma. ²² The Durban March was a major step forward.

Durban Conference

In July 2000, Durban hosted the 13th International AIDS conference, a first for the developing world. The conference brought together people living with HIV, scholars, activists, and government officials. With the help of international activists, TAC led 6000 people in a march to the opening of the conference, demanding access to HIV treatment in Africa and an end to AIDS denialism and stigma. Iconic images of TAC members wearing HIV-positive t-shirts flashed across television screens around the world. TAC had successfully put ending disparities in access to treatment, AIDS denialism and stigma on the conference agenda. ²³

Prior to the conference, scientists from around the world had published the Durban Declaration, emphasising the overwhelming evidence that HIV causes AIDS. ²⁴ But President Mbeki did not take notice. Opening the conference, he sidestepped the causality issue and spent much of the time talking about poverty as the greatest cause of ill-health. ²⁵ Other speakers were more reflective. Judge Edwin Cameron, a South African High Court Judge living with HIV, noted that “in my own country, a government that in its commitment to human rights and democracy has been a shining example to Africa and the world, has at almost every conceivable turn mismanaged the epidemic.” ²⁶ President Mandela concluded the conference by urging an end to a “distracting” debate and calling for action “as a matter of the greatest urgency.” ²⁷

Reflecting on the impact of Durban, Justice Cameron sees it as a moment where the moral depravity of pharmaceutical companies became clear. “I almost pronounced a judgment upon them. I think their moral position became intolerable in the eyes of the entire activist community and, more importantly, in the eyes of the AIDS mainstream.”

Fluconazole

TAC followed the Durban March by launching the Christopher Moraka Defiance Campaign to challenge Pfizer’s pricing of fluconazole, an anti-fungal medicine that treated infections associated with HIV/AIDS.

As the HIV epidemic turned into an AIDS epidemic, opportunistic infections were becoming more common. Dr. Eric Goemaere, an MSF physician and a leading figure in the HIV treatment movement, grimaces as he remembers the moment. “Patients were brought in wheelbarrows, or carried by their families,” he recalls. Waiting rooms were lined with people lying on the ground. “Fluconazole was available,” Dr. Goemaere continues, but “absolutely unaffordable.”

TAC member Christopher Moraka knew this intimately: he died from complications arising from opportunistic infections, one of which he could not afford to treat with the medicine. In February, Moraka had testified before a Parliamentary inquiry into the price of fluconazole.

A month after the testimony, TAC challenged Pfizer to lower the price of its drug, or permit voluntary licensing of the patent. TAC said that the government was buying fluconazole for R29 per tablet when it was available through generic manufacturers for R2 per tablet outside South Africa. Pfizer soon announced donations of fluconazole for treatment of cryptococcal meningitis, but not the more common systematic thrush.

TAC criticised the manoeuvre as a “public relations exercise to disguise profiteering.” ²⁹ As part of the Defiance Campaign, TAC members Zackie Achmat and Jack Lewis travelled to Thailand and brought back 5000 capsules of generic fluconazole. Their civil disobedience made newspaper headlines, stirring a national debate about the high cost of medicines

“People were dying across the country and doctors were saying they could not afford to prescribe the right medicines,” Achmat told an interviewer. “We wanted to set a moral example and put the right to health and life before profit. We don’t want to be smugglers — this is the government’s job to do.” ³⁰

Pfizer eventually backed down and began a programme of donating fluconazole to the public health system—but, yet again, with terms and conditions that led to questionable benefit. TAC, with the authorisation of the Medicines Control Council, continued to import generic fluconazole. ³¹

What the Defiance campaign teaches us, then, is the twin power of civil disobedience against patent laws and an unyielding commitment to treatment for all. Today, treatment activists widely acknowledge the power of the latter by recognising the challenges posed by donations. They are frequently limited to specific patient populations in narrow geographic regions; they can be stopped at any time; and they make introducing sustainable solutions more difficult by reducing incentives for generic companies to enter a market. MSF recently rejected Pfizer’s donation of pneumonia vaccines. ³²

But civil disobedience no longer occupies the same place in the activist toolkit. Inspired by this legacy of direct action, activists should criticise “public relations exercise[s] to disguise profiteering” ³³ whenever they see them and demand better.