For decades, Black HIV activists have filled the gaps left by public systems that failed to adequately fund prevention, treatment, and long-term care. From peer education and harm reduction to policy advocacy that expanded health care access nationwide, these Black-led organizations have often functioned as both first responders and architects of survival. Today, that carefully built infrastructure hangs in the balance.

Alicia Downes, director of programs at AIDS United, says the past year has been marked by widespread uncertainty. Facing the Trump administration’s massive federal funding cuts,  HIV prevention and care organizations across the country are scrambling to prevent service disruptions for clients. The cuts have reshaped the day-to-day reality of HIV work in ways that are deeply destabilizing for both nonprofit organizations and the communities they serve.

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In addition to the global cuts that already took place under Trump in 2025 – which experts say led to hundreds of thousands of death worldwide – policy analyses of the FY2026 budget request show tens to hundreds of millions of dollars in potential reductions to testing, surveillance, and outreach infrastructure for HIV prevention programs through the Centers for Disease Control and Prevention (CDC). In addition, reporting indicates that the administration moved to terminate roughly $600 million in CDC grants tied to HIV and STD prevention and surveillance programs, cuts that directly affect state health departments and community-based service providers that rely on federal dollars to run testing, education, and prevention services.

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Public health experts and advocacy organizations have warned that these proposed reductions, alongside broader CDC budget cuts and restructuring, could significantly disrupt HIV prevention systems nationwide, especially in regions where federal funding supports the majority of local HIV programs.  

The trickle-down effect

While Black and Brown organizers are often expected to adapt quickly, Downes emphasized that resilience does not erase the harm caused by instability. She said funding reductions have created anxiety not only about organizational survival, but about basic necessities like housing and income for staff. “That gets us really anxious and uncertain about whether we’ll have full-time jobs, the impact it has on our individual living, our family, housing, everything,” Downes explained. “It has a real trickle-down effect.”

Carli Gray, program manager of AIDS United’s Melanated Movement Engagement portfolio, said the effects of these cuts are being felt across the entire ecosystem of HIV services. “Across the board, we’ve seen the cuts to the funding and their approach to ending the epidemic being really destabilizing for a lot of the organizations that we serve.”

That destabilization shows up most clearly in the everyday services people rely on. Programs that once offered consistent access to food pantries, clothing closets, and HIV prevention resources are now operating on reduced schedules. Gray said that even as needs continue to grow, organizations are increasingly forced to ration services, noting that people who once accessed basic resources weekly are now being turned away or told to come back less often. 

At the organizational level, funding losses have triggered consolidation and restructuring nationwide. “We’ve also seen opportunities where community-based organizations have had to condense,” Gray said, “where two organizations have to come together in order to be able to provide the same amount of benefits that they used to be able to provide on their own.”

Those changes are not simply administrative. They carry emotional, psychological, and material consequences for the people doing the work. Downes described it as “the shock and awe of all of the changes that have been happening over the last year.”

“Everybody’s trying to figure out how to make sure that services continue and there’s no disruption for clients,” Downes said. Those efforts have become more urgent as cuts to CDC-linked funding streams have forced some organizations to close entirely. Downes said closures have left other providers struggling to absorb unmet needs with fewer resources. “Because some of the CDC funding was cut, some organizations closed their doors and had to figure out what to do next,” she said.

In response, AIDS United has expanded its Sector Transformation work, helping organizations assess whether they need to merge, restructure, or fundamentally rethink their operations. Downes said those conversations consistently reveal the same message. “What we’re hearing organizations tell us is, we need more money to continue to do the work. It’s not that we want to go anywhere.”

Trust as harm reduction

The consequences of underfunding are particularly stark for Black women, who already face disproportionate barriers to healthcare access, including higher HIV incidence rates. Downes noted that even basic prevention services now hinge on whether organizations can afford adequate staffing. “We need to ensure that if a woman comes in and she wants to get on PrEP, there is a staff person who’s going to help her navigate.”

Private and philanthropic funding, however, has not reliably filled the gaps left by federal cuts. Downes said many organizations are finding that alternative funding sources are either unavailable or narrowly restricted. “Many of the private funding sources aren’t there to provide the additional funding that people need,” she said. Moreover, beyond logistics, the emotional toll on staff and community members has been significant. Gray said she has had to intentionally move away from what she described as “toxic positivity” in order to respond honestly to the moment.

“I’ve had to practice how not to be toxically positive in this landscape,” Gray said, explaining that listening has become just as important as offering solutions. “Hearing stories from grantees, hearing about their struggles, being a listening ear, and then working to provide solutions in a timely manner, that timely manner has changed.”

Despite the instability, both Gray and Downes emphasized that advocacy remains critical, particularly as public awareness of HIV continues to decline. Downes said storytelling remains one of the most powerful tools available to Black HIV activists.

“When you put a face to an experience, it sometimes hits the right person who’s willing to understand what someone else is going through,” she said. That storytelling is necessary, she added, because many people no longer recognize HIV as an ongoing public health issue. She warned the reduced funding has predictable consequences. “The administration has reduced HIV prevention dollars, and it means there is not a lot of HIV testing and health education happening.” As a result, higher infection rates are likely.

“What we’re probably going to find at the end of this year is that last year’s HIV incidence rates went up, because people didn’t have access to PrEP and didn’t know where to go for an HIV test,” she said. Concerns about who is being deprioritized by these funding decisions are widespread, particularly among LGBTQ+ communities. Gray said she has heard directly from organizations and individuals who feel pushed out of care altogether. “Folks don’t feel like they can go into organizations and get the care they used to be able to get,” she said, referring to shifts in LGBTQ+-related funding. Some interpret those changes as intentional.

“I’ve heard organizations feel like it’s seen as a way of getting more people to go back into the closet and not feel like they have access to the care that we should all have access to,” she said. In this environment, trust has become a form of harm reduction. Gray emphasized that accurate information, delivered by trusted messengers, can help stabilize communities facing fear and misinformation. “When people are misinformed, it’s easier to be scared,” she said. “But when you trust the information you’re receiving from a trusted individual or organization, it makes people feel more stable.”

That need for trust extends into conversations about HIV cure research. Gray said curiosity about recent scientific breakthroughs is high, particularly among long-term survivors and people aging with HIV, but skepticism remains.

“There’s always a question when I’m in community spaces about what the update is on the cure,” she said. Downes added that medical mistrust in Black and Brown communities makes it especially important to consider who delivers that information. “We need to make sure the person saying this is real is someone we trust in the community.”

Despite the challenges, Downes pointed to recent advocacy wins as evidence that collective pressure still matters. She cited the recent flat funding approval for HIV programs, the final federal appropriations decisions in which Congress rejected proposed deep cuts to domestic HIV prevention, care, and research programs and instead maintained funding at roughly the same levels as the previous fiscal year.

Lawmakers ultimately preserved core funding for programs such as the Ryan White HIV/AIDS Program and the Ending the HIV Epidemic initiative on a bipartisan basis, even after earlier budget proposals suggested major reductions or eliminations. However, experts note that flat funding does not mean increased capacity. Because operational costs, staffing, and service demand continue to rise, maintaining the same funding levels effectively functions as a real-dollar reduction in program power, forcing HIV organizations to stretch limited resources further while trying to sustain testing, treatment access, and prevention services.  

So for Black HIV activists and organizations, the lesson is familiar. Silence accelerates harm. Speaking, organizing, and visibility remain essential tools for survival.

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