Johannesburg, South Africa – Last year, Mary* finally had the conversation she had been dreading for more than a decade.
Mary has lived with HIV since 2008.
But the 36-year-old has also carried the burden of another secret: Lita*, her daughter, was born with HIV.
Speaking from her four-room home in the bustling township of Soweto, just south of Johannesburg, where she lives with Lita and her parents, Mary recalls the fear she felt as she prepared to tell her child about her condition.
“I had to tell her last year that she has HIV eventually, and I was very worried,” she recalls.
Lita has been receiving treatment since birth – a daily antiretroviral (ARV) tablet that is a combination of different drugs. The pill stops the HIV virus from reproducing in her body and keeps her immune system healthy.
“My child is very healthy and happy,” Mary beams, her eyes lighting up.
But until recently, Lita, who is thriving at 12 years old, didn’t understand what the medication was for.
Lita now participates in a local after-school programme that not only provides assistance with homework but also incorporates sports and psychosocial support for children living with HIV.
Mary, who is currently unemployed and a single mother, relies on a government grant as well as support from her family to survive.
The struggle for mother and daughter begins with the challenge of securing medication to treat HIV, but it also extends to managing the daily reality of living with the virus, which includes social stigma, and accessing healthy food.
In the months when she can’t go to the local government clinic to collect her and her daughter’s ARV treatment because of persisting health issues partly related to her HIV status, Mary finds solace in the support of the community organisation Crystal Fountain, which delivers medication to her doorstep.
The organisation also has a disclosure programme through which social workers helped Mary speak to Lita about her condition and how, although she will have to be on treatment for the rest of her life, she could still be healthy.
“They helped me in telling my child that she has HIV and made us feel very supported,” she explains.
Mary and Lita also benefit from the organisation’s food vouchers, allowing them to obtain groceries like maize meal and vegetables.
But critical support provided by Crystal Fountain and other community initiatives addressing HIV/AIDS now hangs in the balance. The administration of United States President Donald Trump, which was responsible for funding nearly a fourth of what South Africa spends to combat HIV, has threatened these programmes with sweeping cuts to US foreign aid budgets. Some organisations have been forced to shut down certain programmes while others have stopped operating entirely.
‘We have to help these parents’
The magnitude of the HIV epidemic in South Africa, a country of 63 million people, is staggering. About 7.8 million currently live with HIV, including an estimated 270,000 children under 14.
Every year, 10,000 children are estimated to be infected with HIV while 2,100 die from HIV-related causes.
According to UNAIDS, the United Nations agency that coordinates global action for preventing and treating HIV/AIDS, the majority of these cases stem from transmission occurring before or during birth with a smaller number contracting the virus later through breastfeeding.
Under Trump, the US government halted funding for the US President’s Emergency Plan for AIDS Relief (PEPFAR), a global health investment introduced in 2003.
In the past year, South Africa received about $440m in PEPFAR funding, accounting for 22 percent of the country’s $2.56bn HIV budget.
This budget goes towards treatment for millions of people, testing programmes, HIV research, education drives and other community support initiatives.
PEPFAR is the source of most of the funding for South Africa’s HIV programmes supported by USAID, the US Agency for International Development. Under Trump, the agency has in effect been dismantled.
With the halt in funding, counselling initiatives and programmes including testing, education and community support have shut down.
“What is at risk is the support we were giving to the households of kids infected with HIV,” Rebecca Chakane, a social worker with Crystal Fountain in Soweto, explains.
“The [food] vouchers and the support groups – those are very important.”
Across the sprawling township of Soweto, countless families among the 1.8 million people who live there struggle with HIV. The hardship faced by mothers of HIV-positive children echoes in the words of Soweto resident Tshepiso*.
She describes her emotional turmoil following the diagnosis at birth of her nine-month-old son, Thulani*.
“It has been very, very hard,” she confides, adding that she blamed herself for her son’s condition.
Tshepiso, like Mary, relies on free medication from state-run clinics.
South Africa’s health minister, Aaron Motsoaledi, says the funding cuts for HIV programmes will not affect access to free ARV treatment that millions of people receive.
“There’s no chance of medication being interrupted. [The] government buys 90 percent of medication and the other 10 percent comes from the Global Fund [NGO],” he says.
However, beyond medication, Tshepiso has needed emotional support, too.
In her search for solidarity, Tshepiso discovered a monthly support group run by Crystal Fountain for parents raising HIV-positive children.
In the shared stories and collective struggles, she found a community. The organisation also provided monthly food packages, a source of immense help and relief.
But Crystal Fountain has now ended some programmes, including its food aid, and Tshepiso worries about how she will feed herself and her baby.
“I don’t know what we are going to do,” she says.
Access to nutritious food, especially in impoverished areas like Soweto, is a vital component of children’s overall treatment, according to Chakane, who says research over the years has illuminated how HIV management must go beyond just the provision of ARV drugs.
Support programmes are also crucial.
Some children become resentful of their parents upon learning they have HIV, which may lead them to abandon their medication. Community workers help families navigate this scenario – and it is one they often encounter.
“Most kids blame their parents for the infection, creating a complicated situation that sometimes leads them to stop taking treatment. Therefore, we have to help these parents,” Chakane says.
“With the USAID cuts, we can’t do these [support] programmes any more,” she laments, pointing to the ripple effect of funding losses on essential services.
‘Nowhere to turn’
In Mpumalanga province, about 300km east of Soweto, 31-year-old community worker Thulisile Mahole voices her anguish over the abrupt closure of the Greater Rape Intervention Programme (GRIP), a USAID-supported nonprofit where she worked.
The US government dramatically slashed its foreign aid budgets soon after Trump took office on January 20. On the morning of January 28, Mahole, who captures data for community programmes aimed at addressing HIV/AIDS and combating gender-based violence, left home for her office.
“I went to work expecting just another regular day, but then they called a staff meeting and told us that the USAID cut had happened and we had to stop everything right away. It was so chaotic,” she recalls. “I was devastated. I was in complete shock. As a parent with bills to pay, you are never prepared for a situation like that.”
Mahole’s journey at GRIP began as a first responder in a care room – private rooms in police stations run by NGOs aimed at assisting and protecting victims of sexual violence.
“We provided a safe space for women. When someone reports a rape case, they often have to return to the home of the person who harmed them,” Mahole explains, referring to how family members or intimate partners are often perpetrators.
“Our role was to make survivors feel seen and supported, to show them there was a place for them to go if they felt unsafe.”
The survivors would go to them before they had even spoken to police officers, she says. “I would provide them with basic counselling. … We assisted them in opening police cases and obtaining medical help,” she explains.
In a country with high rates of rape with more than 40,000 rapes recorded annually, according to police statistics, and the highest number of people living with HIV in the world, programmes like GRIP were essential in providing support to survivors and helping curb the spread of HIV. It provided rape victims, who are at risk of contracting the virus, with preventive medication and education.
GRIP’s care rooms now stand empty.
Since it closed, rape survivors have approached Mahole on the street in her township of Dantjie on the outskirts of the eastern city of Mbombela, seeking help.
“There are people who are being raped or harassed, and they want help. They know I worked in a care room that used to aid survivors, and I have to tell them there’s no care rooms any more,” Mahole says, her voice heavy. “It is heartbreaking.”
For Mahole, the thought of these services being discontinued has been nearly impossible to accept. “I couldn’t believe that women who are already so vulnerable would have nowhere to turn,” she says.
After losing her job, Mahole hoped that what she calls a “dangerous decision” would be reversed. However, as funding cuts became widespread, her hopes began to fade.
Sole breadwinners affected
The Networking HIV and AIDS Community of Southern Africa (NACOSA), which commissioned GRIP to deliver its support programmes, says the consequences of terminating these programmes are too enormous to quantify.
Spokesperson Sophie Knobbs notes that GRIP had been active since 2014.
“Before the cuts, we were reaching 32,000 survivors a year. Now, those survivors could be left without any support,” Knobbs says.
NACOSA has been forced to shut down all its USAID-supported programmes.
“More than 160 of our 470 staff members were immediately let go of, and a radical restructure is under way,” Knobbs adds.
She emphasises that community workers – many of whom were survivors of gender-based violence themselves – were among the hardest hit.
“Many of them are the sole breadwinners for their families,” she says. “It has been devastating.”
‘Risk a rebound’
The Trump administration’s cuts to USAID which distributes PEPFAR funding, not only halted HIV support programmes but also stalled HIV research and clinical trials.
“This is a crisis,” says Glenda Gray, a leading HIV researcher in South Africa at the University of the Witwatersrand.
“When you take your foot off the accelerator, you risk a rebound in HIV transmission.”
In 2023, about 50,000 people died of HIV-related causes, according to the government.
The Desmond Tutu HIV Centre, a research facility at the University of Cape Town, says the suspension of US funding could lead to an additional 500,000 HIV-linked deaths in South Africa over the next decade. This is due to a halt in testing, awareness and support programmes.
Gray says the medical community, NGOs and the government are scrambling to find interim solutions for funding critical HIV research programmes.
However, she is sceptical that these efforts could salvage essential research programmes that had relied on US National Institutes of Health grants, now halted by the Trump administration.
“The situation has threatened basic science,” Gray tells Al Jazeera. “Many researchers working on critical HIV projects have had to be laid off.”
One of the projects that has come to a halt was work on a promising vaccine to prevent HIV. The BRILLIANT Consortium, led by three scientists in South Africa, relied completely on a $45m USAID grant.
“With the grant stopping, our progress has been delayed, and it’s a huge challenge,” explains Neetha Shagan Morar, a research manager with the project. “We can’t treat our way out of the HIV epidemic. We need a preventative vaccine.”
Meanwhile, researchers, NGO staff and parents are concerned about the future.
Despite government assurances that AVR medication will remain accessible, Mary and others worry about whether the loss of HIV programmes could ultimately cost children like Lita the medication they need to stay alive.
“For now, we don’t know if we will be affected,” Mary says.
*Names have been changed to protect identities.
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