Hundreds of people gathered at Stonewall Inn in New York City in June for a candlelit march marking 45 years since the first reported AIDS cases. The rally ended with a die-in, bodies lying still on the sidewalk and pavement in a moment of silence. But this was no memorial to the past alone. The marchers, original HIV and AIDS activists joined by a new generation of organizers, came to protest federal policy moves that threaten to dismantle decades of progress: Medicaid restrictions, slashed international funding, and cuts to the National Institutes of Health's research budget.
"The HIV community has always been the one to push the scientific community and the government to do the right thing," said Oni Blackstock, an HIV physician. "HIV advocacy groups have never taken their foot off the gas of organizing and pushing forward."
The immediate threat comes from new Medicaid rules requiring millions of low-income Americans to prove they work, study, or otherwise remain active for at least 80 hours a month to keep coverage. The Urban Institute estimates this could cost 5 million to 10 million people their Medicaid by 2028. For people with HIV, the stakes are catastrophic: roughly 40 percent rely on Medicaid at any given time, and 85 percent depend on it at some point in their lives. Losing coverage, even temporarily, can cause viral loads to rebound and treatment to fail.
"For people with HIV, that's a matter of life or death, because if your treatment is interrupted, even for a short time, you can lose viral load suppression," said Virginia Shubert, a senior policy adviser at Housing Works, the New York City advocacy organization focused on ending the HIV and homelessness crises.
The Medicaid changes are just one front. The House has also proposed cutting 225 million dollars from the Ryan White HIV/AIDS program, which delivers low-cost care to about half of all people with HIV in the United States. Several states' AIDS drug assistance programs are running out of money, forcing waitlists in Florida and elsewhere. A proposed 2027 budget would eliminate the Centers for Disease Control and Prevention's entire HIV-prevention budget and zero out federal housing aid for people with AIDS.
Activists are deploying the full arsenal of tactics honed over four decades. Housing Works and allied groups have flooded the federal comment period on Medicaid work requirements while lobbying Congress directly. Legal challenges are expected. Act Up, which led demonstrations at the FDA and on Wall Street in the 1980s, is now pushing for the New York Health Act, a state single-payer bill that would bypass Medicaid eligibility battles altogether. In Florida, sustained activist pressure secured a reversal of cuts to the state AIDS drug assistance program last month.
The fight extends globally. When a stop-work order froze nearly all U.S. foreign assistance in January 2025, activists responded with 250 fake coffins delivered to the State Department steps, occupations of House office buildings, and disruptions of congressional testimony. The administration dissolved the U.S. Agency for International Development, laying off more than 12,000 workers and folding its functions into the State Department.
This moves PEPFAR, the President's Emergency Plan for AIDS Relief, which has saved more than 25 million lives since 2003, into the hands of an agency with no traditional public health infrastructure. "The state department was always a political agency, not a technical agency," said Vincent Wong, who spent 16 years at USAID and the World Health Organization before being fired in 2025. "We're moving to a system that is untested and unknown."
A recent analysis by the Clinton Health Access Initiative found steep drops in HIV testing, prevention services, and mother-to-child transmission prevention across more than a dozen countries since the funding freeze began.
Research funding is also under siege. When Republicans threatened a 40 percent cut to the National Institutes of Health budget last year, the Treatment Action Group and allied scientists lobbied Congress to preserve about 3.3 billion dollars in dedicated HIV research funding. But targeted cuts have still hit research on racial disparities, transgender health, and immigrant health. The NIH froze HIV research funding in South Africa, home to the world's largest HIV epidemic.
Mark Harrington, who founded the Treatment Action Group in 1992 to accelerate HIV research, said the Heritage Foundation has pushed to brand HIV advocacy organizations as a "lobby" to be defunded, calling it "a hate machine" targeting transgender people, immigrants, and other groups disproportionately affected by HIV.
The Treatment Action Group blends old and new tactics, convening panels of HIV researchers in Senate conference rooms for what Harrington calls "educational" briefings for senators and staffers. This insider strategy traces back to Act Up's earliest days, when members studied scientific fields so they could sit across from federal regulators as informed equals. When agencies stop listening, Harrington said, activists fall back on direct action. "If the FDA wouldn't meet with us, we would go do a demonstration, and then they would suddenly want to talk."
What unites all these fights, organizers say, is a refusal to let the epidemic be treated as history. "It's so often that people are interviewing Act Up as the past, as if the HIV epidemic is not happening still and worsening under this administration," said Lana Leonard, a newer member of the group.
Ivy Kwan Arce, who has organized with Act Up since her 1990 HIV diagnosis, acknowledged the exhaustion that comes with fighting to rebuild what was already won. "One of the hardest things for me is seeing how easy things get forgotten, and how hard it is to build it back, especially with government leaders who are anti-science. It is a little terrifying."
Author James Rodriguez: "The pattern here is unmistakable: activists are mobilizing again because they have to, and the government is betting they'll get tired before the cuts take full effect."
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