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Data drought: How funding losses are compromising South Africa's HIV response efforts

Data drought: How funding losses are compromising South Africa's HIV response efforts
Ida Jooste
By Ida Jooste
29 May 2025
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About 40% of the health workers who collected data in the country’s HIV hotspots either lost their jobs in February or will be jobless in September, leaving a massive knowledge gap in their wake. Experts warn that not knowing what we don’t know is dangerous.

“Picture the patient walking into the facility. The first person who greets them is the data capturer, who looks at their file. From there, the data tells the story of what should happen next,” says Moses Mashupye, who was a data capturer for the Anova Health Institute, working with public clinics in Capricorn District, Limpopo. “You’re the engine of the facility. You know where to refer people, track patterns, and raise red flags when needed.” 

Mashupye is one of 1,601 data capturers who lost their jobs when the Trump administration abruptly halted all Pepfar funding for HIV and TB projects through the United States Agency for International Development, USAid, in February. Another 1,421, funded through the Centres for Disease Control (CDC), are also likely to lose their jobs in September, when the US government’s financial year ends. 

According to health department spokesperson Foster Mohale, USAid and CDC-funded data capturers account for about 40% of the workers who collected crucial HIV data in the country’s HIV hotspots. 

The massive scale of these losses is likely to have a big impact on the quality and continuity of HIV data — leaving researchers, policymakers and activists without the information they need to make sense of the funding cuts and find solutions.

The data collected ensured patients didn’t fall through the cracks — Mashupye already knows of hundreds of patients who missed appointments for antiretroviral treatment (ART) or testing — and helped the health department monitor the disease.

That missing information means guesstimates and anecdotes are driving key decision-making about the 7.9-million people living with HIV in the country. Now, much of that information is simply not being captured. 

Counting our data capturers


Mohale says the data capturer jobs were lost in the 27 health districts where the US government funded projects and health workers. Together, those districts account for 82% of South Africa’s HIV burden. At a press conference on 15 May 2025, Health Minister Aaron Motsoaledi said he was trying to fill that gap. Gauteng has hired and trained 75 data capturers, and North West has hired 173, and Mpumalanga 200. But that still leaves us thousands short.

“Data is at the heart of understanding where we are and what progress we’re making, and what our problems are in making better progress,” said Salim Abdool Karim, director of the Centre for the Aids Programme of Research in South Africa (Caprisa), who says South Africa has an obligation to meeting its part of the United Nations’ goal to end Aids as a public health threat by 2030.

For this, countries around the world have halfway targets, known as the 95-95-95 goals, that need to be met by the end of 2025. South Africa needs to have 95% of all people with HIV diagnosed, and of those 95% need to be on antiretroviral treatment. Of those on antiretroviral treatment 95% need to have so little virus in their bodies that they can’t transmit it to others; scientists call this being virally suppressed. 

Motsoaledi says South Africa is currently at the 96-79-94 mark. The second “95” is what we’re so behind on; we’re struggling to get people who know they have HIV on treatment and keep them on it. 

Data collection is central to identifying, then fixing gaps like these in HIV programmes. Which is why Pepfar spent more on data capturers than any other type of health workers in South Africa — about 12.5% of all salary funding — and that includes nurses, community health workers and lay counsellors. 

Skilled data capturers like Mashupye, who handled sensitive patient data and helped spot trends that shaped disease responses, earned about R10,000 to R14,000 a month, said Kate Rees, a public health medicine specialist at the Anova Health Institute.

“I think this is the nub of the problem,” said Linda-Gail Bekker, head of the Desmond Tutu Health Foundation, at a recent Bhekisisa and Southern African HIV Clinicians Society webinar about the impact of the funding cuts hosted by Bhekisisa and the HIV Clinicians Society. “If you don’t measure something, you won’t even know that it’s a problem. So, unfortunately, to date a lot of it has been anecdotal stuff.”

Key populations guesstimates


During our webinar Rees agreed. She said the lack of reliable data had forced guesswork.  

But from the data that is coming in, Rees is seeing “key metrics rapidly deteriorate” — viral loads, CD4 counts, tests for young babies — when compared to last year. Viral loads and CD4 counts tell doctors how well HIV treatment works. 

“We’re seeing about a 30% decrease in people (in the City of Johannesburg) starting on antiretroviral therapy. We hope that that is mostly due to incomplete data capturing. The records are not being updated, but we don’t know, and so it becomes incredibly difficult to monitor the programme.”  

Rees is also concerned that current government indicators don’t adequately track groups of people with a higher chance of getting HIV — called key populations — such as  sex workers, gay and bisexual men, people who inject drugs and transgender people. For the past 10 years, nearly half of new infections globally have happened in these groups. 

Every year, the UNAids Global Aids update shows why it’s so important to put money into services for key populations. ​​When new infections in those groups are reduced, it also slows down the spread of the virus in the general population. 

That’s what is giving Kholi Buthelezi, national coordinator of the sex work movement Sisonke, sleepless nights. 

Pepfar funded 12 specialised clinics across the country. Now that those are gone, sex workers are being referred to state clinics where they face discrimination, making them reluctant to go there. Because of that, some have stopped taking anti-HIV pills that can stop infection or ARV treatments. But, she said during our webinar, without data there is no knowing the scale of the problem.

The detail in the data


The deputy director-general for National Health Insurance, Nicholas Crisp, says he isn’t too worried about the missing numbers, and that the data tracking gap might be a blessing in disguise, a chance to create one system for the different ways in which donors require organisations to report it.  

But he warns things could worsen if CDC-funded data capturers also lose their jobs in September. 

“I’ve got no doubt that there are going to be dents in the impact of what we’re able to collect and report on, but exactly what and where and how, I can’t really say. I think we would need to ask the people on the ground about that.”

Fezile Mgxagxama had been working on the ground as a data capturer in Hillbrow for six years, when he too, lost his job overnight. He was one of eight data capturers Anova deployed to the fast-paced Esselen Street Clinic to support the government service to 20,000 people in the area. Just three state-employed data capturers remain. 

“As it is, when we were together, the government capturers used to do about 20% of what we did per day,“ says Mgxagxama. “We used to pass our Pepfar training on to them to improve their productivity. Now, we have heard they are falling more behind, day by day.” 

To get reliable data for real-time decision making, Pepfar funded highly detailed data collection. This sort of expertise, from running programmes to managing the data, has taken decades to build, and experts say they aren’t convinced the R2.82-billion to fill the funding gap left by Pepfar is going to cover the catch-up time that’s going to be needed. 

When are you guys coming back?


It was data that helped South Africa turn HIV dissidence on its head. In 2001, South Africa had little data on the proportion of people with HIV, and people were refused free treatment due to government denialism. But the Human Sciences Research Council’s first national survey in 2002 was a turning point: it revealed that more than 11% of participants were HIV positive, showing the scale of the crisis and prompting action, as the Bhekisisa data team reported in December.

Data has been quickly disappearing around the world as the Trump administration strips scientific data from US websites, including global Pepfar data, which means another reference point, historical data, has been lost to HIV disease trackers who figure out trends. 

Not having the Pepfar data reminds Mitchell Warren, the executive director of the New York-based HIV prevention organisation, Avac, of what Trump argued during the height of the Covid-19 pandemic: “If we stopped testing right now, we’d have very few cases, if any.” 

Warren says this makes no sense. 

“Pepfar’s systems weren’t perfect, but they were consistent and used to guide real-time decisions. Now, we’re flying blind. So here’s the choice: guess, spend money and hope. Or use data to drive smart, targeted decisions.”

The data vacuum is what was worrying delegates in the corridors of last week’s Interest conference in Windhoek. Researchers and HIV specialists at the Africa-focused HIV gathering were fearful that this would be the last time they saw the kind of detailed insight that has been generated by Pepfar-supported projects in the past, hindering their ability to guide the HIV response. 

But right now, say researchers like Bekker, the need to get into a room to set priorities and keep the hard-fought momentum going is what’s urgent. 

“We saw amazing leadership during Covid, right? And then private funding kind of followed in its wake. We’re not hearing that this time around. And my concern is because it doesn’t feel like anyone’s in charge.”

Mashupye and his patients are worried, too. He says patients are calling him on his personal cellphone every day and asking him: “When are you guys coming back? Is there any feedback from Trump? Because we need you.” DM 

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

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