Congress just passed a sweeping bill that includes changes to Medicaid expected to cut millions of people with low incomes and disabilities from the program. President Donald Trump’s administration is also pursuing deep cuts to public health funding to the Centers for Disease Control and Prevention.
The impact of these federal policies will be felt across the health care system, including in the HIV/AIDS community. Public health workers, advocates and patients are bracing for what they describe as a perfect storm, which may undo years of progress in HIV treatment and prevention efforts.
And the stakes are high in the Midwest and South.
Several Midwestern Cities have been designated as HIV “hotspots” due to the rising number of new cases; and the South accounts for nearly half of all HIV diagnoses nationwide.
How does Medicaid serve people living with HIV?
Throughout the AIDS crisis in the 1980s, HIV was considered a death sentence. Now, access to medicines and testing can protect people with and without HIV from spreading or ever contracting the virus.
For many patients, accessing those treatments and prevention measures has been made possible by Medicaid, which is the biggest health insurance provider for that group, covering roughly 4 out of every 10 people with HIV in the U.S.
Todd Fuqua, who runs an Indianapolis photography business, was diagnosed with HIV in 2012 and immediately started treatment thanks to his Medicaid coverage.
“My immune system isn't being eaten away at by the virus. And more importantly, I can't transmit the virus to other people through sexual contact,” he said.
“So right away, better for me, better for the community.”
But some, like Fuqua, are worried about the Medicaid work requirements that were passed by Indiana lawmakers earlier this year. And at the federal level, lawmakers have passed work requirements that could decrease Medicaid enrollment by more than 10 million people nationwide.
Like many people, Fuqua works enough to qualify under the new rules, but worries that the added layer of bureaucracy could end up cutting him off from medication anyway.
An analysis by KFF, a health policy nonprofit, found that the 87% of people who would meet the work requirements based on their work status or because they qualify for an exemption, could face issues when trying to document their compliance or verify their exemptions. It’s why as many as 1 million people in the Midwest may lose coverage due to administrative mishaps, even if they still qualify for Medicaid coverage, according to an analysis by the Urban Institute.
For many HIV patients like Fuqua, Medicaid is not a luxury — it’s a lifeline. Medicines to suppress HIV, such as the drug Biktarvy, can cost upwards of $4,000 per month.
“I haven't been bold enough to kind of ask the question, like, what happens if Medicaid goes away?” He said. “What are we going to do? Part of me says we'll figure out a way, but that's a lot of people to absorb into an already frail system.”
HIV funding streams are uncertain
In 2019, President Trump announced his plan to end the HIV epidemic in the U.S. in 10 years. The program, called Ending the HIV Epidemic, or EHE, has so far put an estimated $2.3 billion towards initiatives that include testing, prevention and treatment.
Indianapolis was one of 48 jurisdictions across the country identified for the funding because of its high number of new infections. Other Midwest cities like Chicago, Detroit, Cincinnati, and Columbus are also identified as HIV hotspots. That gives these cities access to the special federal funding.
That funding is not currently under threat. But funding to the Centers for Disease Control and Prevention that fuels almost all prevention efforts is.
The most recently proposed Trump budget for 2026 almost completely slashes funding for HIV testing and prevention to the CDC. The CDC funds 91% of domestic HIV prevention efforts. The proposed cut amounts to a roughly $794 million decrease.
HIV Outreach Coordinator Joshua Brown, who works for the Marion County Public Health Department, talks through the resources at a pop-up HIV testing clinic in downtown Indianapolis on a hot afternoon in late June. It’s part of the Health Department’s recurring efforts to provide support and contain the spread of the virus.
Brown said he worries that reduced funding for prevention will lead to a public health setback.
“People are not going to have access to care, people are not going to know their status and be HIV positive and put other people at risk for that transmission,” he said.
The impact will also be felt by local nonprofits, which receive some of their funding through the CDC and Ending the Epidemic, said Alan Witchey, president and CEO of the Damien Center, Indiana’s largest HIV/AIDs service organization.
“Medicaid doesn't pay for all of the care that somebody in poverty, living with HIV, needs. It pays for part of it, and then clinics like ours have to fill in the rest of that funding,” he said. “This is a perfect storm.”
Damien Center’s clinic offers resources like free HIV testing, affordable prevention medications, housing, and other services. Witchey said many of the nonprofit’s funding streams now feel at risk.
Michael Butler, the director of the Ryan White HIV Services for the Marion County Health Department, acknowledged that cases have continued to trend upwards, but said that testing is an important part of understanding the status of the virus.
“In 2024, we had about 320 new people who were diagnosed with HIV, who were tested here in Marion County and were then linked to care,” he said. “Ultimately, that will help us decrease the new transmissions, because these people will be on medication and in a really good health status.”
Butler said he feels secure about federal funding through February of 2026, the end of the department’s fiscal year. After that, he’s not sure what prevention services will still be covered, which means it will be harder to find people who are already sick and keep them from spreading the illness.
That includes access to things like PrEP, or pre-exposure prophylaxis, which is a drug that can be taken by people not infected with HIV and potentially exposed to the virus to reduce the chance that they will become sick with the disease. Access to PrEP is funded, in part, through CDC HIV prevention dollars.
“It's certainly a lot less expensive and more logical to prevent an illness,” he said. “Such as getting on PrEP or using a condom, limiting the number of partners so that I’m living a safer, healthier life.”
'Programs are being asked to do more with less'
Policy experts and local health organizations worry that the wide-ranging cuts and changes to federal funding streams will put more pressure on fewer providers.
Lindsey Dawson, a policy expert with KFF focused on HIV, said that national programs like Ryan White have limited funds, meaning they won’t be able to expand if more people need to utilize their services.
“If somebody loses Medicaid and can't re-enroll in the program, they could turn to the Ryan White program, but the program has limited dollars,” she said. “ It doesn't work like the Medicaid program, where if more people enroll or have more health needs, the program can continue to fund and expand because of the way it's structured.”
That may mean that other services — not directly related to HIV — provided by a program like Ryan White would have to be reduced, like covering the cost of drugs to help combat opportunistic infections or a substance use disorder.
“If there are more people who are relying on those programs, most programs are being asked to do more with less, and are going to have to face tough choices,” she said.
Contact Health Reporter Benjamin Thorp at bthorp@wfyi.org.
Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. We partner with NPR stations across the Midwest and surrounding areas — including KBIA and KCUR in Missouri, Iowa Public Radio, Ideastream in Ohio and WFPL in Kentucky.
