‘Nothing in our playbook’: HIV advocates brace for funding instability

The ERC is one of countless organizations feeling the trickle-down effects of the deep uncertainty that has taken hold in President Donald Trump’s second term over funding for treating and preventing HIV and AIDS.

“We are scaling down a bit this year,” Giral said.

Seven years ago, Trump stunned advocates with an audacious pledge to eliminate HIV by 2030. His administration started an Ending the HIV Epidemic Initiative, which called for “advancing health equity by scaling up key HIV prevention and treatment strategies.”

Trump has seemingly reversed course in his second term, proposing the elimination of funding for several key HIV prevention and surveillance programs — and targeting funding cuts for the kind of healthcare safety net programs on which many people with the virus rely.

Although many requested cuts were ultimately rejected by Congress and the courts, more changes remain on the table, especially as Trump aims to overhaul the Atlanta-based Centers for Disease Control and Prevention and gut diversity, equity and inclusion programs.

Some HIV prevention grants have already been reduced, and some local advocates say they have already seen delays in funds arriving.

“We try our best to continue,” ERC chief executive officer Jaqueline Brown said. “But this has been unprecedented. There is nothing in our playbook.”

For some longtime advocates, the fear is more than just existential.

“Uncertainty leads to new infections and additional disparity … ,” said Dr. Daniel Driffin, an Atlanta-based HIV activist and the co-founder of the nonprofit Public Health Innovation Lab. “It’s creating unnecessary anxiety and burden amongst a population that is very vulnerable.”

The Trump administration says it is still focused on ending HIV. But in a sign of what’s changed, the CDC’s webpage for Ending the HIV Epidemic Initiative now includes a banner stating: “The Trump Administration rejects gender ideology due to the harms and divisiveness it causes. This page does not reflect reality and therefore the Administration and this Department reject it.”

Credit: Miguel Martinez/AJC

Credit: Miguel Martinez/AJC

In a statement to The Atlanta Journal-Constitution, a spokesperson for the U.S. Department of Health and Human Services said certain HIV grants “are being terminated because they do not reflect agency priorities.”

“HHS is committed to ensuring Americans’ taxpayer dollars support gold-standard science that benefits all Americans,” the spokesperson said. “The Department is strengthening efforts to end the HIV epidemic by expanding access to prevention, treatment, and care through investments in next-generation therapies, support for viral suppression programs, emergency preparedness efforts, and public access to trusted HIV information and local services.”

Braced for impact

Metro Atlanta frequently ranks among the top U.S. regions for new HIV infections. The CDC identified 50 areas that account for half of all new HIV cases in the U.S. and determined Cobb, DeKalb, Gwinnett and Fulton counties were among them.

In 2023, the latest data available, metro Atlanta’s new diagnosis rate was more than double the national average, according to the AIDSVu project from Emory University’s Rollins School of Public Health.

The data show the burden isn’t spread equally among all Atlantans: Black people made up 69% of new HIV cases here in 2023. Transgender women were also particularly vulnerable.

Those groups also have lower access to drugs that can stop the transmission of HIV.

Malcolm Reid has felt the shifting priorities of the Trump administration, but said there have been many changes to both treatment and public sentiment around HIV since he was diagnosed in the late 1990s.

“Guys my age were used to dealing with stigma,” said Reid, 68, who lives in Decatur with his husband. “Stigma meant lying about your sexual identity, lying about having a virus, concealing your medication when people came over.”

All of that led to fewer people being tested, he said, which allowed the virus to continue spreading. According to the CDC, more than 700,000 people have died of HIV since 1981.

“I remember saying to myself: ‘I don’t want to be the old guy sitting at the end of the bar,’” Reid said. “But as I get older, I’m like: ‘Thank God that I can be an old guy sitting at the end of the bar.’”

Credit: Miguel Martinez/AJC

Credit: Miguel Martinez/AJC

Reid said seeing news reports of cuts to the federal AIDS Drug Assistance Program in Florida was one of the first alarm bells for him. Those changes to Florida’s ADAP in March would’ve dropped eligibility from making an annual household income at 400% of the poverty level — or about $63,800 for a one-person household — to 130% of the poverty level.

Although Florida’s ADAP eligibility level was reinstated shortly after, Reid fears what would happen if the change were to make a comeback in Florida, or Georgia. The drugs typically range in cost from $2,000 to $3,500 for a 30-day supply.

“Who is paying for that?” Reid asked.

A failing grade

Driffin, of the Public Health Innovation Lab, said before Trump’s second term he would have graded the country’s HIV/AIDS programs a “solid B.” He said the government was funding robust prevention programs, as well as others for monitoring the virus and ensuring timely treatments.

Now he would rate the government’s response an “F.”

“Threats to eliminate different pieces of the federal response to HIV has just created unnecessary turmoil and confusion that ultimately is felt at the local levels,” said Driffin, who lives with HIV.

Jeff Graham, of the LGBTQ+ rights organization Georgia Equality, said testing and prevention efforts at the community level have been crucial to the progress in reducing new HIV cases. Those efforts predate the formal strategies and government-backed programs, he said.

But the federal funding is critical, he added.

Credit: Miguel Martinez/AJC

Credit: Miguel Martinez/AJC

“If you look at the whole history, before there were federally funded prevention programs, communities came together to form their own prevention programs to do their own work,” Graham said. “Once the government began to support them, that’s when they really could be launched and utilized at the scale that was needed to bring down the rate of new diagnoses, and so that’s what you see throughout the ’90s.”

Cuts to the CDC last year canceled nearly 700 grants nationally, including some for HIV research. Much of the funding for HIV prevention was restored, but healthcare advocates say the initial cuts could have lasting effects on research.

“We’re always researching and evaluating what is working from a public health perspective, and when you interrupt a grant … it really takes away a lot of the work and the research that has been done,” said Aryn Backus, a former CDC employee who helped create the National Public Health Coalition. “So not only are you losing the program and the staff, but you’re losing the science.”

A strained safety net

Other advocates have drawn attention to major new requirements for Medicaid eligibility enshrined in the “One Big Beautiful Bill Act” that Trump signed into law last year. Those changes are expected to knock about 8 million people out of the government healthcare program for the poor.

Medicaid is the largest single public payer for HIV treatment in the U.S. and covers 40% of people living with the virus.

GOP proponents have argued the Medicaid eligibility changes were meant to correct unsustainable spending and eliminate waste, fraud and abuse.

“Medicaid was created as a lifeline for America’s most vulnerable, not an open tab,” Georgia Congressman Buddy Carter, R-St. Simons Island, wrote in an AJC op-ed last fall. “… Nearly $1 trillion in cuts will help stabilize Medicaid for future generations, reduce inflationary pressure, and restore fiscal sanity after years of blank-check governance.”

Adding to the uncertainty, Congress allowed Affordable Care Act subsidies to expire last year, which caused insurance premiums to spike for millions more people.

Mark King is an Atlanta-based HIV activist and writer of the site “My Fabulous Disease.” In an opinion column for the AJC, King wrote: “When hard-working people are forced to choose between a roof overhead, buying groceries, and paying for the sudden spike in their ACA insurance premium, health care coverage will lose.”

Credit: Handout

Credit: Handout

King said in an interview with the AJC that changes at the federal level put countless people at risk of losing their insurance coverage.

“And where will they end up? In emergency rooms, at much higher costs to the taxpayers. So it’s just such a shortsighted, cruel way to conduct our public health policy,” he said.

King said he has been sometimes reliant on the various safety net programs that are seeing deep cuts.

“It really comes down to who do we value, who’s worth saving in this country,” he said.

The Georgia Department of Public Health was able to use state funds to maintain its AIDS Drug Assistance Program without disruption until federal funds arrived, a spokeswoman for the agency said. She added that DPH received part of the federal money it anticipated for an emergency fund that supplements ADAP and will receive the rest in the coming months.

Not all HIV/AIDS programs have been cut.

AID Atlanta, one of Georgia’s largest HIV/AIDS service organizations, receives some funding directly from the federal government, according to executive director Nicole Roebuck. The organization has not seen direct cuts to its funding so far, and it has not had to scale back any programs.

But Roebuck said the uncertainty has made the environment “dicey.”

“The unknown is always concerning,” she said, “but we continue to just press forward and budget as though we will receive the dollars, and that common sense will prevail in terms of understanding the importance of these dollars and how they impact people on the ground.”

AID Atlanta provides many of its services for free, and many of its patients are uninsured, Roebuck said. Federal programs fill the gap for people who otherwise would not be able to afford treatment, she said.

“Even if it’s just a threat, words, a potential threat, it can be discombobulating for not only the organization itself, but for the members that we serve,” Roebuck said. “They see the news as well, so they wonder, oh gosh, what will this mean for me?”