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Daily Maverick
6 days ago
- Health
- Daily Maverick
Data drought: How funding losses are compromising South Africa's HIV response efforts
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
Yahoo
20-03-2025
- Health
- Yahoo
Trump administration weighs deep cuts to CDC's HIV prevention program
Donald Trump's administration is reportedly mulling cuts to a public health program that accounts for nearly all federal spending on HIV prevention efforts, reaching thousands of people a year. With no other programs to replace them, cuts to the Centers for Disease Control and Prevention's HIV Prevention Division could jeopardize progress in addressing the nation's HIV epidemic and potentially cost lives, according to public health experts and LGBT+ advocacy groups. More than $1 billion was appropriated for HIV prevention efforts this year, and the agency spent roughly $1.3 billion on the prevention of HIV and sexually transmitted infections within the previous fiscal year. About three-quarters of that spending supports state and local health departments and nonprofit groups working to prevent HIV in their communities. In 2022, more than 22 million HIV tests were performed by 60 CDC-funded state and local health departments and community organizations, which connected roughly 8,000 people newly diagnosed with HIV to healthcare they may have otherwise not received. CDC support is 'extremely significant in terms of funding efforts' for HIV prevention, according to Lindsey Dawson, associate director of HIV policy and director of LGBTQ health policy with nonprofit health research and news organization KFF. 'The role of the CDC prevention funding is to provide states, local jurisdictions and community-based orgs with funding to do surveillance [and] HIV testing to help shore up prevention … including linking people to care,' she told The Independent. Threats to that funding follow declining numbers of new infections in the United States, which saw a 12 percent drop between 2018 and 2022. Those declines were even more dramatic in jurisdictions that received additional federal funding. Eliminating those funds will 'jeopardize' continued success and potentially lead to an increase in new infections, Dawson told The Independent. During his first term in office, Trump announced an initiative that sought to end the nation's HIV epidemic by 'focusing resources in the 57 jurisdictions where they're needed most.' The president's target date for 'Ending the HIV Epidemic in the U.S.' was set for 2030. Eliminating funding to combat the epidemic would make that virtually impossible. 'The success of the 'Ending the HIV Epidemic' initiative is in peril,' according to Colleen Kelley, chair of the HIV Medicine Association's board of directors. 'Not only will we not end the HIV epidemic with the current administration's policies, we could reverse these gains and go back to the dark days of the '80s when people died from HIV every day,' she said in a statement. LGBT+ advocacy groups fear those impacts would be particularly acute among LGBT+ Americans. 'An effort to defund HIV prevention by this administration would set us back decades, cost innocent people their lives and cost taxpayers millions,' according to Kelley Robinson, president of the Human Rights Campaign, the nation's largest LGBT+ civil rights group. 'This is not just a policy debate — it is a direct assault on the 1.2 million people living with HIV in the United States and countless others who are vulnerable to HIV,' she said. 'The LGBTQ+ community still carries the scars of the government negligence and mass death of the HIV/AIDS epidemic. We should be doubling down on our investment to end the HIV epidemic once and for all, not regressing to the days of funeral services and a virus running rampant.' A spokesperson for the Department of Health and Human Services — now under the direction of Secretary Robert F. Kennedy Jr — stressed to The Independent that a final decision on the CDC's HIV prevention efforts has not been made, and a timeline for a decision is unclear. 'HHS is following the Administration's guidance and taking a careful look at all divisions to see where there is overlap that could be streamlined to support the President's broader efforts to restructure the federal government,' deputy press secretary Emily G. Hilliard told The Independent. 'This is to ensure that HHS better serves the American people at the highest and most efficient standard,' she said. 'No final decision on streamlining CDC's HIV Prevention Division has been made.' If HHS does cut the program, that work would be continued elsewhere within the agency, according to a statement from an HHS official speaking on background about the administration's plans. But it's unclear where the agency could continue that work, and other agencies and programs focused on HIV are statutorily obligated to administer other forms of medical care, not prevention efforts, according to KFF. If that funding is wholly eliminated, the burden for prevention efforts would fall on state and local governments and cash-strapped community groups facing their own budget constraints against a shrinking pool of federal grant opportunities, forcing public health officials across the U.S. to make difficult decisions.
The Independent
19-03-2025
- Health
- The Independent
Trump administration weighs deep cuts to CDC's HIV prevention program
Donald Trump 's administration is reportedly mulling cuts to a public health program that accounts for nearly all federal spending on HIV prevention efforts, reaching thousands of people a year. With no other programs to replace them, cuts to the Centers for Disease Control and Prevention 's HIV Prevention Division could jeopardize progress in addressing the nation's HIV epidemic and potentially cost lives, according to public health experts and LGBT+ advocacy groups. More than $1 billion was appropriated for HIV prevention efforts this year, and the agency spent roughly $1.3 billion on the prevention of HIV and sexually transmitted infections within the previous fiscal year. About three-quarters of that spending supports state and local health departments and nonprofit groups working to prevent HIV in their communities. In 2022, more than 22 million HIV tests were performed by 60 CDC-funded state and local health departments and community organizations, which connected roughly 8,000 people newly diagnosed with HIV to healthcare they may have otherwise not received. CDC support is 'extremely significant in terms of funding efforts' for HIV prevention, according to Lindsey Dawson, associate director of HIV policy and director of LGBTQ health policy with nonprofit health research and news organization KFF. 'The role of the CDC prevention funding is to provide states, local jurisdictions and community-based orgs with funding to do surveillance [and] HIV testing to help shore up prevention … including linking people to care,' she told The Independent. Threats to that funding follow declining numbers of new infections in the United States, which saw a 12 percent drop between 2018 and 2022. Those declines were even more dramatic in jurisdictions that received additional federal funding. Eliminating those funds will 'jeopardize' continued success and potentially lead to an increase in new infections, Dawson told The Independent. During his first term in office, Trump announced an initiative that sought to end the nation's HIV epidemic by 'focusing resources in the 57 jurisdictions where they're needed most.' The president's target date for 'Ending the HIV Epidemic in the U.S.' was set for 2030. Eliminating funding to combat the epidemic would make that virtually impossible. 'The success of the 'Ending the HIV Epidemic' initiative is in peril,' according to Colleen Kelley, chair of the HIV Medicine Association's board of directors. 'Not only will we not end the HIV epidemic with the current administration's policies, we could reverse these gains and go back to the dark days of the '80s when people died from HIV every day,' she said in a statement. LGBT+ advocacy groups fear those impacts would be particularly acute among LGBT+ Americans. 'An effort to defund HIV prevention by this administration would set us back decades, cost innocent people their lives and cost taxpayers millions,' according to Kelley Robinson, president of the Human Rights Campaign, the nation's largest LGBT+ civil rights group. 'This is not just a policy debate — it is a direct assault on the 1.2 million people living with HIV in the United States and countless others who are vulnerable to HIV,' she said. 'The LGBTQ+ community still carries the scars of the government negligence and mass death of the HIV/AIDS epidemic. We should be doubling down on our investment to end the HIV epidemic once and for all, not regressing to the days of funeral services and a virus running rampant.' A spokesperson for the Department of Health and Human Services — now under the direction of Secretary Robert F. Kennedy Jr — stressed to The Independent that a final decision on the CDC's HIV prevention efforts has not been made, and a timeline for a decision is unclear. 'HHS is following the Administration's guidance and taking a careful look at all divisions to see where there is overlap that could be streamlined to support the President's broader efforts to restructure the federal government,' deputy press secretary Emily G. Hilliard told The Independent. 'This is to ensure that HHS better serves the American people at the highest and most efficient standard,' she said. 'No final decision on streamlining CDC's HIV Prevention Division has been made.' If HHS does cut the program, that work would be continued elsewhere within the agency, according to a statement from an HHS official speaking on background about the administration's plans. But it's unclear where the agency could continue that work, and other agencies and programs focused on HIV are statutorily obligated to administer other forms of medical care, not prevention efforts, according to KFF. If that funding is wholly eliminated, the burden for prevention efforts would fall on state and local governments and cash-strapped community groups facing their own budget constraints against a shrinking pool of federal grant opportunities, forcing public health officials across the U.S. to make difficult decisions.
Yahoo
10-03-2025
- Health
- Yahoo
CDC asks researchers to assess how their projects align with Trump administration priorities
The Centers for Disease Control and Prevention sent a survey on March 6 asking some federally funded researchers to assess how their work aligns with the priorities of President Donald Trump's administration, according to documents obtained by ABC News. CDC-funded researchers were asked whether their research would help combat "Christian persecution," defend women and children against "gender ideology extremism" or help curb illegal immigration. They were also surveyed about whether their research included any diversity or climate change initiatives -- among other questions that roughly align with recent executive orders. On Friday, the agency clarified that the survey was only applicable to CDC partners doing work outside the United States. It's not clear how many researchers received the email, which was sent by the CDC's Global Health Center. MORE: CDC to study vaccines and autism, despite several studies already finding no link "Receiving this survey was deeply unsettling. It's hard not to see it as an attempt to inject politics into scientific research, forcing us to align with ideological priorities rather than urgent public health needs," said one researcher who received the survey. Researchers who received the survey also told ABC News that they were concerned their answers would be used to jeopardize ongoing research or could be used to justify further cuts, especially to research conducted abroad. "I worry about how these responses might be used to justify funding cuts, especially for critical public health initiatives," one researcher said. Earlier this week, a similar survey was sent to foreign aid programs supported by the United States Agency for International Development, according to reporting by The New York Times. MORE: Funding cuts could harm global efforts to fight tuberculosis, WHO warns The survey comes amid federal firings, budget cuts and grant cuts to federally funded research, though some of those actions have been blocked in court. Several hundred people gathered in the nation's capital on March 7 for the Stand Up for Science rally, and there are similar rallies planned in more than 30 other cities. In 2023, the federal government funded roughly $60 billion in scientific research, according to the Association of American Universities. Prior government-funded research has led to technologies such as MRIs and GPS. CDC asks researchers to assess how their projects align with Trump administration priorities originally appeared on
Yahoo
10-03-2025
- Health
- Yahoo
CDC asks researchers to assess how their projects align with Trump administration priorities
The Centers for Disease Control and Prevention sent a survey on March 6 asking some federally funded researchers to assess how their work aligns with the priorities of President Donald Trump's administration, according to documents obtained by ABC News. CDC-funded researchers were asked whether their research would help combat "Christian persecution," defend women and children against "gender ideology extremism" or help curb illegal immigration. They were also surveyed about whether their research included any diversity or climate change initiatives -- among other questions that roughly align with recent executive orders. On Friday, the agency clarified that the survey was only applicable to CDC partners doing work outside the United States. It's not clear how many researchers received the email, which was sent by the CDC's Global Health Center. MORE: CDC to study vaccines and autism, despite several studies already finding no link "Receiving this survey was deeply unsettling. It's hard not to see it as an attempt to inject politics into scientific research, forcing us to align with ideological priorities rather than urgent public health needs," said one researcher who received the survey. Researchers who received the survey also told ABC News that they were concerned their answers would be used to jeopardize ongoing research or could be used to justify further cuts, especially to research conducted abroad. "I worry about how these responses might be used to justify funding cuts, especially for critical public health initiatives," one researcher said. Earlier this week, a similar survey was sent to foreign aid programs supported by the United States Agency for International Development, according to reporting by The New York Times. MORE: Funding cuts could harm global efforts to fight tuberculosis, WHO warns The survey comes amid federal firings, budget cuts and grant cuts to federally funded research, though some of those actions have been blocked in court. Several hundred people gathered in the nation's capital on March 7 for the Stand Up for Science rally, and there are similar rallies planned in more than 30 other cities. In 2023, the federal government funded roughly $60 billion in scientific research, according to the Association of American Universities. Prior government-funded research has led to technologies such as MRIs and GPS. CDC asks researchers to assess how their projects align with Trump administration priorities originally appeared on
