Pepfar funding cut ends Cape Town programme supporting vulnerable children living with HIV

Among the many casualties of the cut in the US President’s Emergency Plan for Aids Relief (Pepfar) funding that was made earlier this year was a programme supporting orphaned and vulnerable children living with HIV in Cape Town. The project made a significant difference in the lives of young people facing adverse circumstances, and for some, its disappearance has affected not only their resilience but also their fight for survival.

The programme was run by the Networking HIV and Aids Community of Southern Africa (Nacosa) in partnership with community-level implementing partners, including the Khumbulani Health, Education and Resource Centre in Khayelitsha. A key objective of outreach efforts was to trace young people who had defaulted on HIV treatment and support them in returning to care.

One former beneficiary of the programme, Lerato*, spoke to Daily Maverick on condition of anonymity to preserve her health privacy. Lerato is a young, aspiring photographer living in Khayelitsha, who credits Khumbulani with helping her get back on HIV treatment at a time when she had defaulted after being overwhelmed by family and personal challenges.

“Khumbulani was very educational, and they gave us a platform to speak out about problems or what’s inside you that's hurting you — things that you can’t talk about at home with the parents, or anyone else from the outside. They were very helpful,” she said.

While Lerato has remained on treatment, she said some former beneficiaries of the Orphans and Vulnerable Children (OVC) Programme had started missing their appointments at the local clinic in the wake of the initiative’s collapse.

“There are already some who are defaulting ever since Khumbulani left the clinic, and I also think that people are going to start being depressed again, because at least we were able to speak out to them about our problems,” she said.

Lerato said she had lost friends who had stopped taking their HIV treatment.

“It’s very sad to hear that one of us has passed away … from the HIV that we’re living with. I think that our lives shouldn’t be ended by this whole thing, because it’s just a virus that cannot be cured, but can be put to sleep by a pill,” she said.

Fight to maintain services

In January, US President Donald Trump signed an executive order imposing a 90-day freeze on all foreign development assistance, pending a review. By late February, almost all Pepfar funding provided to international and South African HIV programmes through the United States Agency for International Development (USAID) had been permanently axed.

Read more: ‘The axe has fallen’ — Trump’s USAID issues notices to terminate funding for key health programmes across SA

Two programmes run by Nacosa were affected by the funding cut: a country-wide initiative for HIV and gender-based violence (GBV) prevention and response, and the Orphans and Vulnerable Children Programme in Cape Town.

Sophie Hobbs, head of communications and advocacy for Nacosa, said “[The OVC Programme] ... had a case-management approach. It was connecting children, and particularly children living with HIV, to the health facilities to make sure that they were getting their medication [and] that their viral loads were taken.

“For the children who were vulnerable but not living with HIV, we did our best to make sure that they didn’t acquire HIV. It was quite a multifaceted, holistic approach … and we worked very closely with the health facilities, but also the Department of Social Development. It was implemented by community-based organisations.”

Before the Pepfar cuts, Nacosa supported about 15,000 vulnerable children in Cape Town. It secured a grant from the HCI Foundation to continue supporting about 4,000 children living with HIV between May and July, but this funding support has come to an end.

Khumbulani in Khayelitsha

As a community implementing partner under Nacosa’s OVC Programme, Khumbulani was working with seven health facilities in Cape Town’s western health subdistrict and six facilities in the eastern subdistrict. It supported about 1,973 young people under the age of 20 living with HIV across these two areas, said Anathi Katsi Katsi, a former project manager at the OVC Programme at Khumbulani.

The health facilities would provide Khumbulani’s linkage officers with a list of children who had discontinued treatment, after which the organisation’s community workers would trace the children and enrol them in the programme, with the consent of caregivers.

Among the factors that led to children defaulting on antiretroviral (ARV) medication were treatment fatigue, substance use by caregivers and food shortages due to poverty. Khumbulani’s team also encountered child-headed households and cases of GBV.

“Our main mandate was to ensure that the children who have disengaged with treatment are linked back to care. We also ran … sessions where we equipped them with treatment literacy … and we gave psychosocial support for all beneficiaries who were within our programme,” said Katsi Katsi, adding that the psychosocial support sessions could be provided at Khumbulani’s offices or in beneficiaries’ homes.

“[In] cases of gender-based violence, we then linked these beneficiaries to Thuthuzela Care Centres and Famsa [Families South Africa] for further trauma counselling and to open up cases.”

Another service undertaken by the team was helping caregivers access ID documents, birth certificates and school enrolment for their children.

At the health facilities, Khumbulani would ensure that beneficiaries accessed care quickly and efficiently, reducing the barrier to treatment created by long waiting times.

“Sometimes, you will find that the facility still has data that a person has disengaged with treatment, and then when the team goes and traces them, the beneficiary has passed on a long time ago or relocated to another area. We also assisted the facility in terms of clearing and updating their system,” said Katsi Katsi.

Fallout of funding cuts

Both Hobbs and Katsi Katsi expressed concern that the loss of the OVC Programme would result in a higher rate of children with HIV defaulting on treatment.

Hobbs pointed out that without the intervention of nonprofit partners, individuals who missed appointments at clinics were less likely to be picked up.

“I think … because those organisations are not in the health facility, smoothing the path for the parents with their children … the queues are longer, and then people can’t take time off work or they don’t have enough money to travel. It’s all those kinds of things in this delicate and interconnected system that have been disrupted,” she said.

Katsi Kkatsi emphasised the value of consistency in the community workers’ relationships with beneficiaries. For members of the Khumbulani team, being cut off from the families with which they had bonded and built trust was distressing.

“We started with this programme in 2022, so we had a three-year relationship with most of our beneficiaries. When we were gone, many of them lost hope. Most of them were not able to make that journey on their own because they were relying on us.

“When we refer [beneficiaries] to other organisations that work within the [health] facility, the trust that they had with us is now not as strong, because they fear that their status is being passed to the next person all the time,” she said.

Facing job losses

Khumbulani continues to run other programmes that were not funded by Pepfar, and the team has set up WhatsApp groups with former beneficiaries of the OVC Programme in an attempt to continue providing some level of support.

However, 43 workers who were serving under the programme at Khumbulani lost their jobs because of the cuts.

“It not only affects us in terms of losing our beneficiaries, but also personally. We’re coming from backgrounds where one is a breadwinner at home. When I heard that the funds were cut, it also brought me down in hoping for the better for my family and a better future for my daughter. I had to change her from the school that she attended before and bring her close to home,” said Katsi Katsi.

At Nacosa, the staff cohort of almost 400 people was reduced to about 84 in the wake of the cuts. Among the implementing partners the organisation was working with, about 600 jobs were terminated.

“The people that we were employing on this particular programme were themselves young women from quite vulnerable communities, and many of them were the sole breadwinners and had young children. And so there's a real ripple effect that I think this is having on those people's lives,” said Hobbs.

Looking ahead

Dwayne Evans, the spokesperson for the Western Cape Department of Health and Wellness, said the loss of Nacosa’s OVC Programme was a concern for the department. He noted that since the USAID stop-work order in January, officials had worked closely with Nacosa to implement a transition process.

“This ensured that children receiving HIV treatment and support services under the programme could continue accessing care without interruption,” said Evans.

“While the core treatment services have been maintained, the end of the Nacosa OVC Programme has resulted in the loss of additional support resources that were critical to the wellbeing of children and their families. These included dedicated staff working with OVC and families, food security initiatives, provision of school uniforms and stationery, transport assistance to health facilities, and access to training programmes.”

The Western Cape has been allocated R90.9-million from the total R590-million that the National Treasury earmarked for provincial health departments to address the impacts of the withdrawal of international donor funding.

Evans said the Western Cape Department of Health and Wellness was taking a “longer-term approach” to the situation, looking beyond filling the gap left by the withdrawal of foreign aid, “towards building a sustainable and resilient response to HIV and TB”.

Its strategies include “transversal system strengthening”, including the digitisation of information systems; facility stabilisation; a localised response targeting “high-burden geographic areas”; and partnerships with civil society and communities.

“Multimonth dispensing [of ARVs], including six-month multidrug dispensing … is being rolled out to ease pressure on facilities and improve access for patients,” said Evans.

A six-month “close-the-gap” initiative was focused on HIV testing, linking individuals to care, retaining them in treatment and welcoming back those who may have interrupted care, he continued.

Nacosa has been able to continue with some of its HIV prevention work, including its adolescent and young people programme supported by the Global Fund. However, Hobbs noted that the budgets for nonprofits in the sector remained tight.

“We are really having to find ways to do more with less, which is not necessarily a bad thing, but I think our biggest worry is that it was largely the independent civil society organisations that lost their funding,” she said.

“The concern is really that … the connection between the community and the facilities is being lost, and has been lost through this process.” DM

*Lerato is a pseudonym.