Palm Springs HIV advocates navigate uncertainty after federal health agency cuts

Jeff Taylor, executive director of HIV+ Aging Research Project – Palm Springs (HARP-PS), said he woke up Tuesday morning to a torrent of phone calls and messages from people looking for reassurance amid the news of the day that the Trump Administration began mass layoffs of 10,000 staffers at U.S. health agencies, including the FDA, CDC and National Institutes of Health (NIH).

There are also reports of plans to close the Division of HIV Prevention as part of the so-called restructuring. Additionally, the NIH canceled hundreds of HIV research grants.

It’s no surprise Taylor received worried phone calls. Palm Springs has one of the largest populations of people with HIV in the country. It’s also a unique population because many people with HIV are now also dealing with concerns related to aging.

That is a topic that is front and center for HARP-PS, an organization whose mission is “To improve the lives of the large and growing population of long-term HIV and AIDS survivors by studying the impacts of long-term HIV disease on the natural aging process and its treatments.”

Taylor explains that HARP-PS is a subcontractor for an NIH-funded HIV cure research group. The NIH funds 10 collaboratories, and HARP-PS is the community engagement partner for one of those 10 collaboratories.

The organization is in its fourth year of a five-year grant, “And those monies have already been allocated,” Taylor said. About half of HARP-PS funding comes from being a partner.

The situation is changing rapidly at the national level, but Taylor said that so far, his organization has not been told that anything is changing.

HARP-PS is responsible for creating a community advisory board related to the research as well as holding events, webinars, and public education campaigns .

“So if [the funding] were to go away, that would definitely impact us,” Taylor said, adding that the organization would be unable to do the work and would have to cut back on employee salaries.

One of the biggest concerns Taylor hears from locals is how this will impact Ryan White funding.

“Every day walking around town I get stopped by people at the park asking about [Ryan White] funding,” Taylor said. “People don’t know what to do without it.”

Since 1990, the federal Ryan White HIV/AIDS Program, named for a 13-year-old who died after he was diagnosed with AIDS after a blood transfusion, has been funding medical care and wraparound support services for people with HIV who might not otherwise be able to afford care.

“A big part of that funding is the AIDS Drug Assistance Program,” said Taylor. “A drug regimen for AIDS could cost up to $60,000 a year.” The program assists low-income people and covers the costs of all their HIV meds. 

Taylor said the program has historically enjoyed bipartisan support and is allocated money through congressionally-approved budgets.

“I think that there’s a pretty good chance that most of this stuff would be protected,” he said while acknowledging the ongoing uncertainty as the administration flouts established laws and norms.

The rollback of HIV research and prevention runs counter to the previous Trump administration’s 2019 goal, the Ending the HIV Epidemic initiative, which aimed to reduce new HIV infections by 90% by 2030 and led to nearly 7,000 fewer HIV cases in 2022 compared to 2016.

One of the biggest concerns for Taylor and others is the effects the federal cuts could have on the prevention of AIDS.

Local healthcare organization DAP Health joined a dozen other LGBTQ+, HIV, and health organizations across the nation last month to condemn the assault on healthcare and research specific to HIV.

“Closing the CDC’s Division of HIV Prevention would not only have a devastating effect on the nation’s progress in preventing new cases of HIV and ending the epidemic,” the letter reads.

Since it was first discovered, AIDS has killed more than 700,000 people in the U.S. It was infecting an estimated 60,000 people a year, Taylor explains, before the introduction of Pre-exposure prophylaxis (PrEP).

Still, an estimated 31,800 new infections occurred in the U.S. in 2022, and about 5,000 people died in 2022 with HIV as an underlying cause of death.

“We’ve made amazing strides in the last few years,” Taylor said. “Now we stand to lose all that overnight.”

“Neither our country nor our own backyard can afford the cost — human as well as financial — of defunding HIV prevention,” added DAP Health CEO David Brinkman in the letter. “At DAP Health, we will continue to fight for the rights and well-being of those living with and at risk for HIV. We refuse to turn back the clock and remain committed to eradicating HIV by 2030.”

Taylor tells those worried about the future of HIV services, “You’re not crazy. This is very real, and it’s happening across the board.”

Despite the challenges, HIV advocates are mobilizing. This week, AIDS United brought 500 people to Washington, D.C. for “AIDS Watch,” where they met with lawmakers to advocate for HIV funding and services. 

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