‘We need to keep fighting’: HIV activists organize to save lives as Trump guts funding

Cedric Sturdevant woke up with "a bit of depression" but made it to church, as he does every Sunday. In a few days, he would drive from Mississippi to Washington, D.C., to join HIV advocates at an April rally against the Trump administration's actions.

It had clawed back more than $11 billion in federal public health grants to states and abruptly terminated millions of dollars in funds for HIV work in the United States. Testing and outreach for HIV faltered in the South, a region that accounts for more than half of all HIV diagnoses.

Dangerous changes loomed: To compensate for tax cuts for the wealthy, Trump's "big, beautiful" bill and budget proposal for fiscal year 2026 threaten to curtail Medicaid, which provides health coverage for people with low incomes and disabilities. About 40% of adults with HIV rely on it for their lifesaving treatments.

Further, the budget proposes to eliminate all HIV prevention programs at the Centers for Disease Control and Prevention. This alone could lead to an additional 14,600 HIV-related deaths within the next five years, according to one analysis.

Trump's budget proposal also would cancel a major grant that provides housing assistance for people with HIV. And it would end a strategic initiative to expand HIV services in minority communities, and another to support the mental health of people of color with HIV or at risk of infection.

"President Trump is committed to eliminating radical gender and racial ideologies that poison the minds of Americans," a White House addendum to the budget says. Letters terminating HIV grants used similar language, targeting "diversity," "equity," and "gender minorities," words that focus resources where they are needed most. Black and Latino people account for about 70% of new HIV infections in the U.S.

The cuts affect Sturdevant personally. He is a gay, Black man living with HIV and the co-founder of a grassroots group that combats health disparities in the Mississippi Delta, one of the poorest regions of the country.

That morning at church, a close friend, pastor Jerry Shelton of Anointed Oasis of Love Ministry, asked Sturdevant to help him deliver a sermon about resisting the urge to give up when life is hard. "The storm may come, but I shall not be moved!" Shelton preached, directing the congregation to approach adversity with confidence in themselves and in God. "Walk boldly!" he shouted.

After the service, Sturdevant resolved to bring the same energy to Washington. He'd tell his colleagues that they are survivors, he said. He'd tell them, "Let's get together and make a plan."

In the past few months, HIV advocates have begun to organize and strategize ways to limit the damage as federal funds are slashed and inflammatory rhetoric rises.

"It is a very scary time to be Black, queer, and living with HIV," said Marnina Miller, co-executive director of the Positive Women's Network, a nationwide group for women living with HIV. "But I am grateful that I am part of a community that will not bow down."

"People are not giving up," said June Gipson, the CEO of a health care nonprofit, My Brother's Keeper, in Mississippi. Then she referenced the 1980s cartoon where heroes combine forces to create a super robot to defend the universe:

"We've got to form Voltron."

The weight of stigma

Sturdevant often reminds his colleagues of all the HIV movement has overcome. In the 1980s, the government refused to acknowledge HIV as gay men died young. Once powerful treatments were available in the 1990s and early 2000s, the public health establishment largely neglected Black people with HIV, especially in the South. In that period, the demographics of the epidemic shifted away from white, upper- and middle-class gay populations in liberal states. Half of new diagnoses today are in the South and a third are among people with low incomes.

When Sturdevant first tested positive for HIV in 2005, he didn't seek treatment. He kept his diagnosis hidden from friends and family because he knew how people talked about HIV. They considered it a death sentence, a punishment for irresponsible behavior, or a disease that could infect them through a touch or a shared toilet seat — which it cannot.

"I thought my family was going to disown me," he said.

A year later, his weight plummeted because he couldn't hold down food or water. Gaunt and feverish, he went to the hospital and learned he had AIDS. His mother slept at his hospital bedside for two weeks: "She said, 'God got you.'"

Once he regained his health, Sturdevant resolved to care for others in his position. Scientists had developed powerful HIV drugs that, if taken daily, transform it from a death sentence into a manageable chronic disease in which a person's virus levels are so suppressed that they cannot spread HIV to others. And policymakers ensured that almost everyone in the U.S. with HIV could get treated regardless of their ability to pay, largely because of Medicaid and the Ryan White HIV/AIDS Program.

But HIV experts had failed to overcome a key problem: Roughly a third of people living with HIV in the U.S. don't get treated or don't take the drugs regularly enough to be virally suppressed. Viral suppression rates are better in many African countries than in America.

To seek treatment and stick with it, Sturdevant understood, people had to have basic needs like food and housing met and, as importantly, a sense of belonging and empowerment. At his first job at an HIV organization in Jackson, Mississippi, Sturdevant regularly checked in with clients who didn't have family members to support them. He hosted gatherings at his apartment and even offered it up as a place to stay. He has taken on the role of dad or uncle to many. "We called ourselves the family of love," he said.

He saw how care bolstered lives, but the federal government needed data to drive its approach to HIV.

In 2012, the CDC expanded its in-depth surveys to learn more about the lives of people at risk of HIV and of those with HIV who weren't virally suppressed. The surveys revealed what Sturdevant knew: A disproportionate number of them grappled with unstable housing, food insecurity, depression, and anxiety. Many participants agreed to prompts like, "Having HIV makes me feel that I'm a bad person," or "Most people think that a person with HIV is disgusting," or "Most people with HIV are rejected."

The data showed policymakers that to curb the epidemic, they needed to address underlying problems that people with HIV faced. Federal funds began to flow to grassroots groups embedded in marginalized communities.

Public health researchers folded Black churches into the effort, recognizing them as hubs of volunteerism and as leaders of social movements. Although churches in the U.S. had historically fueled stigma against sexually transmitted diseases, Amy Nunn, a public health researcher at Brown University, said every pastor she talked with was eager to help. It paid off. In Kansas City, for example, researchers found that congregants who went to Black churches involved in HIV education and outreach were more than twice as likely to be tested.

Community-based interventions worked: New HIV infections dropped by 12% from 2018 to 2022.

Now the grassroots groups that have been so effective are in jeopardy and the in-depth surveys have halted as the Trump administration cuts funds and lays off CDC staff. Some health departments have issued stop-work orders to community-based groups that test people for HIV and connect them to treatment because federal HIV grants are unusually delayed. And as the Department of Health and Human Services continues to cancel HIV grants, the directors of grassroots groups anticipate more cuts.

"A lot of them are new and don't have the resources to survive a year without funding," said Masen Davis, executive director of Funders Concerned About AIDS.

One such group is Sturdevant's.

'Trust the process'?

In 2017, Sturdevant returned home to the Mississippi Delta to launch a nonprofit, Community Health PIER, in one of the poorest and most medically underserved parts of the country. The average life expectancy in the Delta is 68, a decade shorter than the national average. The disenfranchisement of its majority-Black population stems from the region's history, in which policies concentrated wealth and power among the minority-white population during the era of cotton sharecropping, Jim Crow laws and segregation, and, recently, due to gerrymandering.

Sturdevant set up shop in Greenville, near a Black church that served as a headquarters for civil rights activists in the 1960s. In a small office, his team organizes health events, tests people for HIV, and connects those who test positive with treatment and housing assistance, funded through federal programs like Ryan White.

"Whites have been getting Ryan White and other programs for years and living healthy," said Ashley Richardson, administrative assistant of Sturdevant's group. "Around here, Black people are just now getting to the point where we know there are resources to help."

Lately the team fields calls from people with HIV who are terrified they will lose their lifesaving drugs and housing if government programs no longer help with the cost.

Sturdevant worries about keeping his staff employed and his community safe. On the drive home from the April event in Washington, he drearily recounted conversations with Republicans in Congress: "They basically all said trust the process."

The heads of national HIV organizations have stepped up their advocacy, asking Congress to oppose cuts in President Donald Trump's budget request, said Gregorio Millett, director of public policy at the Foundation for AIDS Research, a nonprofit known as amfAR.

Emily Hilliard, spokesperson for the Department of Health and Human Services, responded to queries from KFF Health News by writing, "Critical HIV/AIDS programs will continue under the Administration for a Healthy America." Yet the administration's proposed budget for HIV prevention represents a 78% reduction compared with fiscal year 2025, according to a KFF analysis.

HHS Secretary Robert F. Kennedy Jr. has fostered skepticism about scientific facts concerning HIV, without citing evidence. "Any questioning of the orthodoxy that HIV is the sole cause of AIDS remains an unforgivable-even dangerous-heresy among our reigning medical cartel," he wrote in a 2021 book.

Not bowing to barriers

Researchers and HIV advocates are hashing out strategies to fill in the vacuum in HIV care that the government is poised to leave. For decades, it has driven priorities, coordinated a constellation of HIV groups, and tracked the epidemic. Leisha McKinley-Beach, CEO of a training institute, Black Public Health Academy, in Atlanta, said people must remember that wasn't always the case.

"This massive industry we have today was created by committed individuals at the grassroots level, who were going to help people live with HIV or die with dignity, by any means necessary," she said.

One idea is to have larger, established HIV organizations partner with nascent groups in underserved regions. The bigger ones stand a better chance of garnering significant private donations. And by taking on the fiscal management of grants, large groups could enable small ones to devote time to service rather than fundraising, McKinley-Beach said.

Another strategy, said Kathy Garner, executive director of Mississippi's AIDS Services Coalition, is to fill gaps by coordinating with churches and nonprofits dedicated to food assistance, housing, or mental health.

"One of the solutions is going to be civil society stepping up," Garner said. "That's an old term for people taking care of each other, outside of the government."

"We're going to need to ramp up our services in all kinds of ways, and health and HIV will be a part of that," said Bishop Ronnie Crudup of New Horizon Church International in Jackson, and a member of Mississippi Faith in Action, a coalition of African American churches involved in HIV.

"I have real concerns with what the Trump administration is doing, and how it will play out for the health of people in a poor state," he said.

National groups, such as AIDS United, have been speaking with corporate funders and philanthropies about building a pooled fund to help sustain HIV organizations across the U.S.

Philanthropy for HIV has never come close to matching federal dollars, however. Non-governmental funders put $284 million toward HIV in the U.S. in 2023, compared with about $16 billion in annual federal funds for HIV in recent years.

"The truth is there is no way for philanthropy to make up for the cuts from the federal government," Davis said. "I suspect we will see new infections rise within 18 months, which is heartbreaking."

Sturdevant focuses on survival, not forecasts. "This isn't going to be easy," he said, "but we need to keep fighting for those who don't have the fight in them."