Twenty years ago, Hazel Tau, a young South African living with HIV, and her peers had little chance of getting antiretroviral (ARV) treatment because it was completely unaffordable.

The South African price for just one of the three ARV drugs she needed, AZT, was 665% higher than the best-priced generic available elsewhere in the world.

Only around 20,000 South Africans with private healthcare were on ARVs at the time because of the price.

So Tau, an activist with the Treatment Action Campaign, agreed to be one of the public faces of a challenge to the price of ARVs – cleverly brought as a complaint to the Competition Commission alleging that two pharmaceutical companies were charging excessive prices for first-line ARVs. 

At the time, then-president Thabo Mbeki disputed that HIV caused AIDS and claimed that ARVs were poison, so pressuring the government to act on drug prices was a non-starter.

The targets were GlaxoSmithKline South Africa and Boehringer Ingelheim, with Tau and others complaining that they had contravened the country’s Competition Act by abusing their dominant market positions on ARV prices. 

The SA Competition Commission’s Mapato Ramakgopa explained that the commission agreed with Tau and others, and had sought an order from the competition tribunal to compel the firms to grant voluntary licences to allow generic manufacturers to make genetic ARVs in return for a reasonable royalty. 

“The firms were found to have abused market dominance and fortunately, before the case could be heard by the tribunal, the manufacturers settled the matter and agreed to allow licences for generic and local manufacturers,” said Ramakgopa.

Bittersweet victory

“It was a bittersweet experience because of everyone who could not be saved,” said Tau, speaking at a commemorative event on Thursday.

“I lost friends, family, colleagues. We lost millions of people who were breadwinners. But I will say I was happy with the outcome.”

Finally, she and others could look forward to a life with access to affordable treatment. But Tau’s struggle for treatment access continues today as she is fighting for cheaper cancer drugs.

“We know that, in developed countries, they’ve got cheaper drugs that can help people who have got cancer of different types, but we still have to pay it so I’m not feeling good about that,” said Tau. 

She is also still fighting the stigma faced by people living with HIV – and says that it is time for stand-alone HIV clinics – largely the result of special HIV funding – to be integrated as part of chronic care to spare those who need HIV care from being conspicuous when they go for treatment.

“I blame us for having that HIV clinic. I wish HIV was just dealt with like other chronic diseases, normally without saying ‘this is an HIV thing’ because the stigma started there,” says Tau.

Speaking on World AIDS Day, Tau said that she honoured those who had passed on and those newly infected and wished that AIDS awareness campaigns were active every day.

Access to affordable medicine

Access to affordable medicine continues to haunt people from poorer countries, as the COVID-19 pandemic showed when millions of people in low and middle-income countries could not get vaccines as these had all been bought by wealthy countries.

The question of intellectual property (IP) rights on essential medicine is as burning an issue today as it was during the AIDS era.

Fatima Hassan, director of the Health Justice Initiative (HJI), was one of the lawyers representing Tau and others – and more recently, has been campaigning for wider access to COVID-19 vaccines and therapeutics.

‘The reason we brought the case was because we saw the ‘Lazarus’ drugs. We saw them working for people in the USA. We saw them working for people in Europe.,” said Hassan.

“We saw what Brazilian and Thai activists were doing to try to get compulsory measures in place for their governments to introduce generic therapies into their country. But our government was having none of that. It was in denial of the science and it refused to implement a public sector programme, which is the reason why we had to focus on the price of abuse in the private sector.”

Hassan says that today’s struggles include fighting for access to expensive cancer treatments, exorbitant cystic fibrosis drugs and cabotegravir, an HIV prevention injection that received regulatory approval for use in South Africa on Thursday but remains too expensive for most.

“Pharmaceutical companies have these IP monopolies which then means that we’ve got to continuously fight them on pricing because, in the absence of our government, taking the necessary executive action or issuing compulsory licences, we’re always going to have to rely on civil society or the Competition Commission to deal with the abuse of dominance, capture of the market and excessive pricing,” said Hassan.