Fighting for funds: A new era of HIV activism

“So, the US funding cuts happened, and I was looking for the noise! I was asking the other day, where are my people, why aren’t they shouting?” says Sisonke Msimang, the South African writer and political scientist. 

Msimang was a vocal critic of the Aids denialism of the Mbeki era, supporting the health advocacy organisation Treatment Action Campaign (TAC) in what became a landmark legal victory in 2002 that secured access to lifesaving treatment for HIV-positive pregnant women, which stopped them from infecting their babies.

She is also one of 29 health rights activists featured in the Health and Human Rights Oral History Project, which launched in late March just as the world scrambles to count the costs — in dollars and lives — of the Trump administration’s drastic cuts to funding of HIV programmes and research studies.

Activists say getting the government to find the money might require a back-to-basics approach to HIV advocacy. 

“I was thinking it’s time for noise again,” says Msimang, who now lives in Perth, Australia. “We must meet this moment, pushing for full funding of health by our own government.” 

Looking back to move forward

The series of video testimonies that capture three decades of health activism from around the world might provide a blueprint for the next wave of activism. 

The interviews are housed by the Institute on Inequalities in Global Health at the University of Southern California (USC), which has partnered with Wits University’s school of public health, history department and Section27. The idea for the archive came as a series of global, community-led health justice projects funded by the Open Society Foundation were coming to an end. 

“We saw that the projects represented so much that needed to be preserved, to be able to learn from and to be inspired,” Jonathan Cohen, director of policy engagement at the Global Health Institute, tells Bhekisisa.

Activism in South Africa takes prominent space in the archive, with testimonies from Msimang, as well as Vuyiseka Dubula, who was a central figure in the TAC’s leadership. It also includes a powerful account from Umunyana Rugege, former executive director of Section27, on how the constitution has served as a tool to hold the government accountable for people’s health rights.

Grants can be ended, speakers at the oral history project’s online launch, argued, but history can’t be erased. 

Making history

Stevenson says the archive gives unique insights into the back stories of the many layers of activism that eventually bring about change. 

In the “essential medicines” case in the late 1990s and early 2000s, public protests drew attention to the need for HIV treatment around the world. In South Africa, those protests took on the form of scientists, activists, lawyers, and the media coming together to take on a government that refused to provide HIV-positive people with life-saving treatment, arguing that poverty, and not HIV, caused Aids and that antiretroviral drugs were poisonous.

That activism resulted in a landmark legal victory in 2002 that gave HIV-positive pregnant women access to free preventive treatment to stop the transmission of the virus to their babies. The ruling paved the way for the state to provide free antiretroviral treatment to people with HIV in 2004, which increased life expectancy and slowed down the spread of HIV. 

Twenty years later, the Life Esidimeni judicial inquiry — or inquest — into the deaths of 141 mental health patients, who died while in state care, found there was enough evidence for then Gauteng health MEC Qedani Mahlangu and her former head of mental health in the department, Makgabo Manamela, to potentially be criminally prosecuted for the deaths of at least nine patients.

It was largely due to the activism of organisations such as Section27 and the South African Depression and Anxiety Group that Mahlangu and the government were ultimately held accountable. 

In her video testimony for the archive, Msimang says activism can be highly political, or deeply personal. Telling these stories for the archive helps turn key moments into history, she says.

But only if journalists, activists and researchers tap into it. That point, says Noor Nieftagodien, head of the history workshop at Wits University, is “amplified by the current circumstances of Trumpism, where … there is an urgent need for more of this kind of human rights activism”.

The universal lesson from the archive, he says, is that results come from organising and mobilising people around a cause. 

Holding the state accountable

“In 20 years, we’ll look back to what happened in 2025 and people will want to know a fuller story about how people responded,” says Fatima Hassan, founder and director of the Health Justice Initiative (HJI), a human rights organisation that has been pushing for people to have access to lifesaving medicines. 

She says the oral histories give courage, but in some ways, activism today is more complicated. 

In South Africa, activists now have to deal with a GNU, instead of a single party with one ideology. The GNU is fragile, and Hassan says the HJI and other civil society organisations have sent a number of letters to the government, seeking clarity and progress on plans to address the consequences of the US funding cuts, but they are not hearing back.

So far, the health department says it has commissioned the modelling study previously mentioned, and obtained data from Pepfar, which it used to calculate the amount needed to pay the salaries of people Pepfar-funded projects employed, but it hasn’t yet secured any of the R2.82bn it needs for this financial year. 

Nicholas Crisp, the department’s deputy director-general for National Health Insurance, who led the calculations, told Bhekisisa on April 15 that the department is applying for emergency funding from the National Treasury, via section 16 of the Public Finance Management Act.    

But Hassan says the slow pace at which the department has been moving to get to this point is frustrating. 

She says the business community should have stepped forward by now to acknowledge the scale of the crisis. “History will judge those with money and resources that didn’t come forward and say they’re trying to mitigate the impact.”

But, she argues, some of the “noise” of activism was initially stifled; people speaking for organisations affected by cuts wouldn’t go public — or did so anonymously — so as not to poke the bear (Trump) and lose their contract.

Other things have changed too. 

Mark Heywood, a founding member of the TAC who now serves on its board, says activism is debased because activists get sucked into policy processes.

For example, he says, the South African National Aids Council (Sanac) is an institutionalised collaboration between civil society and the South African government, relying on mutual trust to function. 

For Cohen, the close working relationship between activists and the government is a sign of activist success — it usually means that the state has started fulfilling its health obligations and needs civil society to help it. 

Back to basics?

The funding crisis is a reminder that the need to hold the state accountable never ends, activists say. 

Msimang says working with the state is both essential and seductive. “Where activists find themselves now is [that] we became friends with the government, helping to expand the capacity of the state to reach out to communities.” 

She says the shutdown of the US Agency for International Development (USAID), through which more than half of Pepfar funding for HIV and TB projects to South Africa was channelled, has exposed how civil society has not been pushing hard enough for South Africa to pay for its own health services. Meanwhile, activism itself had been funded through USAID. Now that sector is hobbled too, and unable to fully mount the activism that is needed now. 

Mluleki Zazini, the director of the National Association of People Living with HIV and Aids, says maybe it’s time to go back to basics.

“I think we need to go back to the streets so that we can voice our needs,” says Zazini, who also chairs the civil society forum within Sanac. “We criticise them in boardrooms … maybe they’ve forgotten that we used to mobilise people to get action.” 

Bhekisisa’s Mia Malan was the moderator for the online launch of the archive.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.