'Cost us more in the long run': Federal actions reverse progress on HIV epidemic, experts warn

Amid mass layoffs of federal health workers, which began earlier this week, several key public health offices have been gutted.

The HHS Office of Infectious Disease & HIV/AIDS Policy has been eliminated, as has CDC’s Division of HIV Prevention. Additionally, more than 200 federal research grants related to HIV and AIDS have reportedly been terminated.

Both the HHS and CDC offices are reportedly being merged with a separate HHS program that provides treatment to people living with HIV, per Nature. Advocates are concerned about this approach, given the distinct responsibilities around treatment, prevention and surveillance each office has.

With the cuts, amfAR, The Foundation for AIDS Research, estimates there will be as many as 143,000 new HIV infections, 15,000 AIDS-related deaths by 2030 and $60.3 billion in extra treatment costs.

During a webinar hosted by the Infectious Diseases Society of America on Tuesday, experts spoke out about the impact these and future potential cuts will have on underserved patients around the U.S. 

“It is hard to overstate how challenging and chaotic this time has been for people living with HIV and for those who care for them,” Anna Person, M.D., professor of medicine at Vanderbilt University Medical Center, said on the IDSA call. She sees patients daily in tears over worries about care access. “We are on a fast track to undo decades of progress.”

Major layoffs at HRSA have yet to be announced within the bureau that manages the Ryan White HIV/AIDS program, Person added. It is the largest federal program for people living with HIV and is the third largest source of federal funding for HIV care, behind Medicare and Medicaid.

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In his first term, President Donald Trump launched a campaign to end the HIV epidemic. That very campaign was coordinated by one of the now-cut HHS offices. “It’s just so ironic that DOGE wants to increase government efficiency—well this is the office that did that,” Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, told Fierce Healthcare. Schmid previously served as co-chair of the Presidential Advisory Council on HIV/AIDS and of the Ending the HIV Epidemic Subcommittee. 

The abrupt thoughtlessness with which the programs are being cut will lead to more inefficiency and a hike in healthcare costs, Person echoed on the IDSA call. “It is far cheaper to prevent HIV infection than it is to treat someone living with HIV,” she noted. 

The Fenway Institute, focused on LGBTQ+ and HIV research, has lost 14 NIH grants since January totaling $1.8 million. One study cut was investigating interventions for social isolation among older gay and bisexual men living with HIV. “This particular research project is with a particular population… but it would have applications for the general population,” Sean Cahill, PhD, director of health policy research at the Fenway Institute, told Fierce Healthcare. Cahill was the multiple principal investigator on the project. 

A separate Fenway study was looking at HIV prevention for cisgender, primarily heterosexual Black and Hispanic women. “The axe is not just falling on transgender research, it’s falling on HIV research very broadly, including research with straight people,” Cahill stressed. 

The organization is also supported by foundation grants and corporate contributions, but most of its funding comes from the government. “It’s going to be very difficult to continue the work that we do,” Cahill said. 

D.C.’s Whitman-Walker Health System, home to a federally qualified health center, a research institute and foundation, has also been affected. Nearly three-quarters of its research funding comes from the NIH. The institute has lost seven awards over the past few weeks. 

“We’re actively working now to figure out what comes next,” Kellan Baker, PhD, M.P.H., M.A., executive director at Whitman-Walker’s Institute for Health Research & Policy, told Fierce Healthcare. 

Among the projects affected is a planned $7.7 million community-based biomedical research hub in Southeast D.C. Construction was expected to start in the next month. NIH rescinded the bulk of a $2 million grant for the project, which would bring crucial research opportunities to a predominantly Black neighborhood.

“The goal of locating the biomedical research hub in the communities where there is the greatest need… is it increases the accessibility [of trials],” Baker explained. “It also helps ensure accountability.”

The irony is the projects affected help make Americans safer and healthier, Baker said. “We share a goal, at least in name: Make America Healthy. That is the goal of this research,” Baker said. “That shouldn’t be a political question, but unfortunately in this day and age it appears that it is.”

Termination letters sent by NIH to numerous organizations getting funding cuts, seen by Fierce Healthcare, claimed the projects were based on “artificial and non-scientific categories, including amorphous equity objectives” that “are antithetical to the scientific inquiry.” The language, which appears widely verbatim across the board, also claimed DEI studies are “often used to support unlawful discrimination on the basis of race and other protected characteristics.” 

Also impacted by grant cuts last month was the Adolescent Medicine Trials Network for HIV/AIDS Interventions, the only multicenter research network in the U.S. focused on HIV risk for teens and young adults. These age groups account for nearly a fifth of new infections annually. They have lower treatment coverage, less viral suppression and higher mortality from HIV. The network is effectively dissolved, though the cuts may be found illegal if challenged in court, experts told STAT. 

A CDC team working on preventing mother-to-child transmission of H.I.V. was also cut, The New York Times reported. One in four moms can transmit the virus to their baby if untreated. A quarter of infants infected through breastfeeding die before their second birthday. If a woman stops taking antiviral drugs during pregnancy, the virus will rebound within weeks. 

“There’s a real danger there for transmission from mother to child very quickly,” Lynne M. Mofenson, M.D., senior HIV technical advisor for the Elizabeth Glaser Pediatric AIDS Foundation, said on the IDSA call. 

Staff at the HHS Office of Minority Health and its CMS counterpart, focused on reducing health disparities, have also reportedly been eliminated. Schmid does not believe any of these cuts were done for actual efficiency reasons. DOGE, Elon Musk’s Department of Government Efficiency, has yet to propose a detailed plan to improve the current system, he noted. 

“This was done deliberately,” Schmid said. “They’re really going after the gay community, trans community, Black community… someone's targeting these programs.”

An HHS spokesperson previously told Fierce Healthcare that, if cuts happen, HIV prevention work will continue in a different department. "HHS is following the Administration’s guidance and taking a careful look at all divisions to see where there is overlap that could be streamlined to support the President’s broader efforts to restructure the federal government," they said.

The White House plans to set up a new agency, Administration for a Healthy America, to consolidate various agencies, including HRSA and SAMHSA. One of its divisions will be focused on HIV/AIDS, according to a government press release. 

“It’s just a massive loss and we’re losing momentum,” Schmid said. “All it will do is save the government money in the short term, but cost us more in the long run.”