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On a warm evening in June, hundreds of people holding candles marched toward the Stonewall Inn in New York City, the birthplace of the US LGBTQ+ rights movement. Once they arrived, they all dropped to the ground – on the sidewalk and in the roadway – and put their backs against the pavement. The Aids rally, marking 45 years since the first reported cases, ended the way many have since the 1980s: with a die-in, dozens of bodies lying still for a long moment of silence.

The Aids crisis has killed more than 700,000 Americans and an estimated 40 million people worldwide since it was first named in 1981. But the marchers at Stonewall earlier this month were not only mourning the past. They came to protest a wave of federal policy moves to restrict Medicaid, slash international funding and shrink the National Institutes of Health’s research budget. The original generation of HIV and Aids activists, joined by a new wave of organizers, were there to demand that the government not undo four decades of progress with catastrophic funding cuts.

“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. It’s been a steady drumbeat because there are constantly policies trying to devalue people with HIV – and this time will be no different.”

Fighting to preserve Medicaid access

The Trump administration’s new Medicaid rules, issued this month as part of the One Big, Beautiful Bill Act, require millions of low-income Americans to prove they are working, studying or otherwise active for at least 80 hours a month just to keep their health coverage. It’s a paperwork hurdle that could cost 5 million to 10 million people their Medicaid by 2028, the Urban Institute estimates. For the roughly 40% of Americans with HIV who rely on Medicaid at any given time, and the 85% who depend on it at some point in their lives, the new rules could cost them their lives.

“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 dedicated to ending the HIV/Aids and homelessness crises. “It goes beyond the law, and it’s very cruel.”

In New York state, where HIV infection rates have increased in recent years, the Medicaid rules could lead to a surge of new cases. Half of all New Yorkers living with HIV, an estimated 55,000 people, rely on Medicaid for their healthcare, according to Housing Works.

Aside from cuts to Medicaid, the US House has also proposed cutting $225m from the Ryan White HIV/Aids program, which delivers low-cost care to about half of all people with HIV in the US. Several states’ Aids drug assistance programs, which supply antiretrovirals to uninsured people, are running out of money, forcing waitlists in states including Florida.

“The same conditions that make people vulnerable to HIV are going to be the same conditions that make people vulnerable to poverty and therefore eligible for Medicaid,” said Blackstock. She pointed to a proposed 2027 budget that would eliminate the Centers for Disease Control and Prevention’s entire HIV-prevention budget, zero out federal housing aid for people with Aids and cut funding earmarked for Black, Latino and Indigenous communities.

As they have for decades, activists are pressuring lawmakers to stop the cuts. Housing Works and allied groups have flooded the federal comment period on the work-requirement rule for Medicaid, while also lobbying Congress directly to reject the House’s proposed cuts to the Ryan White program and CDC prevention funding. Shubert said legal challenges are likely.

The fight is also playing out state by state. Act Up, which led massive demonstrations on Wall Street and in front of the FDA offices in the 1980s to demand affordable and accessible HIV medication, is now pushing for the New York Health Act, a state single-payer bill they argue would make the entire fight over Medicaid’s eligibility paperwork obsolete. In Florida, sustained activist pressure has secured a win – last month, the state legislature reversed cuts to the state’s Aids drug assistance program.

“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,” said Ivy Kwan Arce, who has organized with Act Up since 1990, when she was diagnosed with HIV. “It is a little terrifying.”

Confronting Congress to fund USAID

Asia Russell remembers when the daily medication used to treat HIV was rationed by geography. She founded the advocacy group Health Gap in 1999 to fight what she called “medical apartheid”, the practice of withholding lifesaving antiretroviral therapy from the global south while it reached patients in wealthy countries within months of approval. Activists led campaigns that forced the issue into public view, resulting in the President’s Emergency Plan for Aids Relief, or Pepfar, in 2003. Today, Pepfar is credited with saving more than 25 million lives.

Those efforts, Russell said, are being dismantled. A stop-work order issued in January 2025 froze nearly all US foreign assistance overnight. Activists, including Health Gap and Housing Works, responded with the delivery of 250 fake coffins to the front steps of the state department, two occupations of a House of Representatives office building and disruptions of congressional testimony as recently as this month, leading to dozens of arrests since Trump retook office.

In early 2025, Trump dissolved the US Agency for International Development (USAID) when he laid off more than 12,000 of its workers. The organization implemented much of Pepfar, with its remaining functions folded into the state department.

“You’ve eliminated an agency that played a major role in ensuring technical excellence, and the state department had not traditionally played that role,” said Vincent Wong, who spent 16 years at USAID and the World Health Organization working on HIV testing policy before being fired in 2025. “The state department was always a political agency, not a technical agency. We’re moving to a system that is untested and unknown.”

While Congress has continued to fully fund Pepfar, thanks to pressure from activists, the administration is slow-walking disbursement, Russell said.

A recent analysis by the Clinton Health Access Initiative found steep drops in HIV testing, prevention services and enrollment of infants in mother-to-child transmission prevention across more than a dozen countries. “The state department is really setting countries – and the world – up to fail,” Russell said.

Confrontation has been key in seeing results, activists said. Activists and budget analysts have pored over leaked spending documents to expose the scale of cuts to individual countries, then briefed members of Congress on those numbers directly. They have also disrupted congressional testimony by Robert F Kennedy Jr and the secretary of state, Marco Rubio. Meanwhile, the legal track has run in parallel, with one case challenging the administration’s funding freeze reaching the supreme court.

“Anybody who worked in the HIV response was an activist at heart,” said Wong, who has since relocated to Berlin to continue working in public health.

Cornering elected officials to fund research

In the early 90s, when the US Aids death rate was approaching 100,000 a year, a few Act Up activists split off to focus on accelerating HIV research. Mark Harrington was one of them, founding the Treatment Action Group (Tag) in 1992 to help develop treatments for HIV and advocate for infrastructure that later underpinned rapid responses to Ebola, Zika and Covid-19.

Last year, when Republicans threatened to cut 40% from the National Institutes of Health budget, Tag and allied scientists lobbied Congress to hold the NIH budget flat, preserving about $3.3bn in dedicated HIV research funding. But Harrington said targeted cuts have still hit research tied to racial disparities, transgender health and immigrant health, and that NIH froze HIV research funding in South Africa, home to the world’s largest HIV and HIV-tuberculosis epidemic, a decision he attributes to racism within the administration.

The fight to preserve funding is unending, Harrington said. Funding for the HIV Vaccine Trials Network, the non-profit that has long conducted clinical trials to find a cure for HIV, is up for renewal, and it is unclear whether Republicans will vote to fund it. Harrington pointed to the influence of the Heritage Foundation, which has pushed to brand HIV and tuberculosis advocacy organizations as a unified “lobby” to be defunded, describing it as “a hate machine” targeting trans people, immigrants and other groups disproportionately affected by HIV.

Tag’s approach to the NIH fight blends old and new tactics. Last summer, the group convened a panel of HIV and tuberculosis researchers in a Senate conference room for what Harrington called a 90-minute “educational” briefing for senators and staffers – part of a year-round presence on Capitol Hill that he credits with helping stave off further NIH budget cuts. That insider strategy traces back to a tactic Arce described from Tag’s earliest days, when members studied narrow scientific subfields so they could sit across the table from federal regulators as informed equals rather than outside petitioners. Harrington said the group still falls back on the older playbook when agencies stop listening: “If the FDA wouldn’t meet with us, we would go do a demonstration, and then they would suddenly want to talk.”

What unites the fights to preserve federal HIV funding, healthcare access and research, organizers say, is a refusal to let the epidemic, or the activism against it, 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 new member of the group.

Leonard said the key is for newer activists to learn from the elders who have remained in the movement, and forge ahead.

“The older members have passed away or are passing away, or a lot of people have peeled off just from the trauma of working in the space,” said Arce. “But to be successful, we need to be on. We need to keep moving forward.”