As Trump administration slashes HIV funding, activists mount 'steady drumbeat' of resistance

Hundreds of protesters carrying candles marched to the Stonewall Inn in New York City on June 5, marking 45 years since the first reported AIDS cases. Once they arrived, participants dropped to the ground on the sidewalk and in the roadway, holding a die-in — a form of protest that has been part of AIDS activism since the 1980s — followed by 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, according to public health records.

The marchers came to protest a wave of federal policy moves under the Trump administration: new Medicaid work requirements issued this month as part of the One Big, Beautiful Bill Act; proposed cuts of $225 million to the Ryan White HIV/AIDS program; and a proposed 2027 budget that would eliminate the CDC’s entire HIV-prevention budget, zero out federal housing aid for people with AIDS, and cut funding earmarked for Black, Latino, and Indigenous communities, advocates said.

“The HIV community has always been the one to push the scientific community and the government to do the right thing,” said Dr. 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.”

The new Medicaid rules require millions of low-income Americans to prove they are working, studying, or otherwise active for at least 80 hours a month to maintain health coverage. The Urban Institute estimates the paperwork hurdle could cause 5 million to 10 million people to lose Medicaid by 2028. Roughly 40% of Americans with HIV rely on Medicaid at any given time, and 85% depend on it at some point in their lives, according to advocates.

“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. “It goes beyond the law, and it’s very cruel.”

In New York state, where HIV infection rates have increased in recent years, half of all New Yorkers living with HIV — an estimated 55,000 people — rely on Medicaid for their healthcare, according to Housing Works. The new rules could lead to a surge of new cases, advocates said. The U.S. House also proposed cutting $225 million from the Ryan White HIV/AIDS program, which delivers low-cost care to about half of all people with HIV in the U.S. Several states’ AIDS drug assistance programs, which supply antiretrovirals to uninsured people, are running out of money, forcing waitlists in Florida and elsewhere.

Blackstock, who serves as executive director of Health Justice, pointed to the proposed 2027 budget: “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.” She said the budget would eliminate the CDC’s entire HIV-prevention budget, zero out federal housing aid for people with AIDS, and cut funding earmarked for Black, Latino, and Indigenous communities.

Activists are responding across multiple fronts. Housing Works and allied groups have flooded the federal comment period on the work-requirement rule and are lobbying Congress directly to reject the House’s proposed cuts to Ryan White 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 FDA offices in the 1980s, is pushing for the New York Health Act, a state single-payer bill they argue would make the fight over Medicaid’s eligibility paperwork obsolete. In Florida, sustained activist pressure secured a win last month when 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.”

Asia Russell, executive director of Health GAP, recalled when daily HIV medication was rationed by geography — a practice she called “medical apartheid,” in which lifesaving antiretroviral therapy was withheld from the global south while reaching patients in wealthy countries within months of approval. Activist campaigns 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 U.S. foreign assistance overnight. Activists, including Health GAP and Housing Works, responded by delivering 250 fake coffins to the front steps of the State Department, occupying a House of Representatives office building twice, and disrupting congressional testimony as recently as this month, leading to dozens of arrests. In early 2025, Trump dissolved the U.S. Agency for International Development (USAID), laying off more than 12,000 workers; the organization had 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 activist pressure, Russell said the administration is slow-walking disbursement. 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 to seeing results, activists said. Organizers 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 Health and Human Services Secretary Robert F. Kennedy Jr. and Secretary of State Marco Rubio. A legal challenge to the administration’s funding freeze has reached 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.

In the early 1990s, when the U.S. AIDS death rate was approaching 100,000 a year, a group of 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 and advocate for research infrastructure that later supported rapid responses to Ebola, Zika, and COVID-19.

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

The fight to preserve funding is unending, Harrington said. Funding for the HIV Vaccine Trials Network, which has conducted clinical trials seeking 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 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 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, Arce said. 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 said, 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. “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.”