A month after stop-work order, Uganda’s HIV response in chaos

On Feb. 10, two weeks after U.S. President Donald Trump froze all U.S. foreign aid spending, Maria Nakyeyune went to refill her HIV treatment. The 33-year-old Ugandan was diagnosed with HIV in 2017 and started taking the daily pills three years later. Her infection is no longer detectable. Nakyeyune normally receives a six-month supply of medicine from a clinic outside Masaka, a bucolic town that catches the breeze from nearby Lake Victoria. At first, it was unclear to her why the pharmacist only handed over enough pills for two months. A counselor explained Trump’s order had stalled the delivery of new supplies. The clinic was under instructions to ration what remained of the lifesaving treatment. Nakyeyune left the center fearing it would be her last refill of antiretrovirals, or ARVs. If it is, she knows what will follow. Decades ago, her mother had been unable to access treatment after she became infected with HIV. The virus debilitated her immune system, leaving her vulnerable to the horrific infections that eventually killed her. “If the situation does not return to normal,” Nakyeyune told Devex, “then I will not remain.” In Uganda, nearly every component of the country’s HIV response was supported by the United States, primarily through the President’s Emergency Plan for AIDS Relief, or PEPFAR. Trump’s stop-work order ignited a crisis. Almost a month later, that chaos persists despite a waiver issued by the U.S. Department of State more than two weeks ago that allowed programs to restart some services, including the delivery of ARVs. A federal judge ruled late last week that all U.S. aid must be restored by Tuesday. But as that deadline passed in Uganda, only a patchwork of services had actually resumed. Many of the programs whose PEPFAR funds come from the U.S. Agency for International Development have not received confirmation they could reopen. And the services that have only received a two-month lifeline. The ongoing unpredictability has only intensified the fear among the 1.3 million Ugandans like Nakyeyune who depend on the United States for HIV treatment. “Anything that detracts from our treatment is actually an attack on our lives,” said Flavia Kyomukama, who heads Uganda’s umbrella organization for people living with HIV, NAFOPHANU. Even if the funding were restored overnight, experts here say it will take months to repair the damage done in little more than three weeks. The people who became infected because they could not access prevention services during the stop-work order will contend with the consequences for the rest of their lives. In a sign of just how dire the situation has become, NAFOPHANU has started resurrecting palliative care services for people living with HIV. If treatment services remain haphazard, “we might need the morphine, we might need the counseling, we might need the end-of-life discussions,” Kyomukama said. Wiped out Since its launch 22 years ago, PEPFAR has invested more than $5 billion in HIV prevention, care, and treatment services in Uganda. The investment is measured in lives saved. The number of people infected with HIV each year has fallen from 98,000 in 2003 to 38,000 two decades later. The widespread expansion of access to ARVs under PEPFAR has reduced the number of deaths caused by AIDS from 53,000 in 2010 to less than 20,000 in 2024. It is also visible in the network of government and nonprofit clinics and drop-in centers built up across the country. In data systems partially paid for by the U.S. government to help those centers track who has picked up their pills. And in the armies of community volunteers who, with PEPFAR support, encourage people to get tested. With every aspect of that response now in disarray following what Ugandans have taken to calling “Trump’s order,” officials are preparing for a surge in new HIV infections. “We expected something [when Trump took office], but not to this scale and not that quick,” Dr. Bernard Etukoit, the executive director of The AIDS Support Organisation told Devex. The immediate impact was “fear and panic, a stampede,” primarily driven by people on treatment. Misguided social media posts warning that ARVs were running out fueled their alarm. The drugs were still available, but the rapid closure of U.S.-funded services meant they were — and remain — much more difficult to access. Lines swelled outside of the clinics that were able to continue offering ARVs in the early days of the pause. Nevertheless, “without the U.S. government support, whatever happens, there will be people who cannot consistently access anti-retroviral drugs,” Etukoit said. “Of course, people not having drugs means you have more sick people … and there could be the emergence of resistance to these valuable therapies.” The disruption to the services that surround HIV treatment might actually have more lasting consequences. In Uganda, anyone who walks into a clinic should be able to get tested for HIV. If the result is positive, they can immediately enroll in ARVs. Those services were allowed to continue under the waiver. But Mariam Nakyayuna said the health center outside Masaka where she works is running low on HIV testing kits, one result of a suddenly unreliable supply chain that depended on U.S. funding. Now the center is only testing the people they consider most at risk of being infected. That means turning away people who might have HIV to potentially infect others. There is no word when more testing kits will arrive. Set directly alongside one of the busiest roads in central Uganda, Mukono General Hospital was able to sustain most services throughout the freeze with Ugandan government funding. But not testing for viral loads. These checks, which determine whether the treatment is actually effective, are conducted with U.S. support. “If you don’t take your viral load, we cannot know whether you are taking your drugs well and you cannot know whether the drugs are working well,” said Sarah Komugisha, who helps provide counseling services at the hospital. People on ARVs have no way of knowing if their illness is advancing or if they risk transmitting the disease. “They are asking me what are they going to do?” Komugisha said. “Are we going to die like dogs?” And the funding pause has shattered the network of people who were the face of the response in most communities. These are the people, usually living with HIV, who are paid very little money from the vast U.S. government funds to help people find facilities where they feel safe getting tested, to convince them that they can maintain a daily treatment regimen, and to raise concerns in instances where the drugs are not working. They play a particularly crucial role in reaching vulnerable and criminalized communities, including gay men and sex workers. These groups have HIV infection rates far higher than the national average, but their members are unlikely to brave the harassment and stigma they would face at a government clinic in order to attain services. Community workers steer them to drop-in centers that operate judgment-free. “If community work is curtailed and there is no alternative source of resources, you can only expect stigma to grow,” Etukoit said. “You can only expect it to contribute to new infections.” The transmission risks caused by these interruptions might still have been mitigated with prevention services, but those have actually been hit hardest. They were excluded from the State Department waiver, except in the case of helping mothers stop the spread of HIV to their newborns. So even as some treatment services resumed, efforts to distribute condoms or the pre-exposure prophylaxis, or PrEP, medicines that can prevent an HIV infection remained shuttered. Even before the pause, “we had more than 100 daily new infections,” Kenneth Mwehongwe, who runs the Coalition for Health Promotion and Social Development, told Devex. “With this pause, we have lost ground.” Just how much will only become clear in the wave of new positive tests anticipated in the coming months. The order by a U.S. federal district court to resume all U.S. aid funding by Tuesday appears to have finally lifted a month-long blockade on prevention services in some areas. But Mwehnogwe said it will take time to reestablish the programs and rebuild trust with community members frustrated by the interruption in PrEP services. And the order will not undo the new infections. No direction Where the waiver and the court order should have offered some relief, their muddled implementation has only added to the confusion. The U.S. State Department issued “a limited waiver” for PEPFAR programs to “implement urgent life-saving HIV treatment services” on Feb. 1. The leader of a Ugandan medical research institution said it took more than a week for U.S. officials to translate the vague waiver into explicit guidance. The institution supports tens of thousands of Ugandans receiving treatment. The director spoke on the condition of anonymity out of fear the U.S. government would completely cut off those services. U.S. officials in Kampala called the leaders of major PEPFAR funding recipient organizations to a meeting at the embassy on Feb. 8. The American officials confirmed that the Ugandan groups needed to present updated budgets and work plans that cut more than 50% of their expenditures. They were also told what services they could maintain, including supply chain expertise. That fact, which was previously unclear, was warmly received. But then the leaders were warned the instructions they were receiving were only good for 30 days. “When did the 30 days start? What happens after 30 days? We don’t know,” the leader of the research institute told Devex. “They told us, we don’t know if we’ll have a job tomorrow.” The hundreds of smaller PEPFAR partners that prop up Uganda’s HIV response did not get this guidance. These are the groups who run the drop-in centers for vulnerable communities, including LGBTQ+ Ugandans, or deliver PrEP supplies to handicapped people who find it difficult to travel. Their funding also originates with the U.S. government, but it is usually filtered through a larger organization. In the days after the stop-work order most heard from their implementing partners that they needed to pause their services. Days later, letters began to arrive terminating their contracts. Most had no choice but to begin laying off staff. The U.S. court order finally seemed to offer a reprieve. Over the weekend, some of these organizations started getting word that they could resume services. But it seems to be limited to organizations whose funding originates with the U.S. Centers for Disease Control and Prevention, or CDC — one of the two U.S. agencies stewarding PEPFAR spending in Uganda. Many of the groups that draw their funds from USAID are still waiting for guidance. They worry that if they restore services without official confirmation, they will be shut down permanently. The CDC-funded programs are also proceeding cautiously. They are only being promised they can stay open until mid-April when the Trump administration finishes its review of foreign aid spending. They are also waiting for new contracts to replace those that were terminated weeks ago. The eagerness to restore services is tempered by the fear of doing so outside formal agreements that spell out how information about their clients will be safeguarded. “It’s really important because you need to know if you’re working under the law,” said Joel Sendi, the program manager at MAHIPSO. Among its many services, the CDC-funded organization runs a clinic for vulnerable, criminalized communities. “We need to be protected,” Sendi said. What next? Civil society organizations are also looking to the Ugandan Ministry of Health to do more to clear up the chaos. At the moment, there is little appetite for litigating why the government allowed its HIV program to become so dependent on one donor. Instead, activists just want the Ministry of Health to act by requesting an emergency $81.6 million supplementary budget to cover what they risk losing in U.S. support for HIV programs. That request has yet to arrive. The Ministry of Health has issued a circular calling for all standalone HIV services to be folded into general outpatient clinics. It seemed to accelerate the government’s longer-term goal of integrating HIV services to cut costs. But that was met with an immediate outcry, particularly from vulnerable communities who fear they would be harassed — and potentially even arrested — if they used government facilities. There are also questions about whether the outpatient health workers would actually have the training to provide HIV services. Ministry officials have since clarified that HIV facilities are not being closed down, but that specialized services will be integrated into government health facilities. That has not relieved the confusion. After the upheaval of the past month, few Ugandan patients and health workers now believe PEPFAR is coming back. At least not anything resembling the program built over the past two decades. Yet, they say it appears to be the only hope to mitigate the ongoing devastation. “I thank the American people for their support. For 22 years we have been happy knowing that we have a life,” NAFOPHANU’s Kyomukama said. “But you don’t just wake up without consulting and you just throw us away.”