Fighting for funds: A new era of HIV activism

Mail & Guardian

22-04-2025

The Health and Human Rights Oral History Project's video testimonies that capture three decades of health activism from around the world, might provide a blueprint for the next wave of HIV activism. (Bhekisisa)
'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, a 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
She is also one of 29 health rights activists featured in the
[WATCH] LAUNCH OF THE ORAL HISTORY PROJECT
In South Africa, more than half of HIV and TB projects funded by the US government's Aids fund, Pepfar,
The health department commissioned a modelling study from Wits University's
The preprint of the study's results will be published this week.
'We need to see urgency from the government to reverse this. We're not seeing that,' warns Sasha Stevenson, who heads up the social justice organisation Section27.
The cost to contain those numbers? R2.82 billion.
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
'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, told
Bhekisisa
.
Activism in South Africa takes prominent space in the archive, with testimonies from
Grants can be ended, speakers at the oral history project's
Making history
Stevenson said 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 news media coming together
That activism resulted in
Twenty years later, the Life Esidimeni
It was largely due to the activism of organisations such as Section27 and the
In her
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, the founder and director of the
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 government of national unity (GNU), instead of a single party with one ideology. The unity government is fragile, and Hassan says the Health Justice Initiative and other civil society organisations
So far, the health department says it has commissioned the modelling study previously mentioned, and
The department's deputy director general for the country's National Health Insurance scheme, who led the calculations, told
Bhekisisa
the department is in the process of applying for emergency funding from the treasury, via section 16 of the Public Finance Management Act, on 15 April.
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 also 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 (US President Donald Trump) and lose their contract.
Other things have changed, too.
Mark Heywood, a founding member of the TAC, now serving on its board, says activism is debased because activists get sucked into policy processes.
For example, he says, the
For Cohen, the close working relationship between activists and government in South Africa is a sign of activist success — it usually means that governments have started fulfilling their health obligations and need civil society to help them.
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 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
Mluleki Zazini, the director of the
'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
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