Federal changes could end up ‘cutting holes' in HIV safety net, experts say

Miami Herald

a day ago

TALLAHASSEE, Fla. - Dallen Michael Greene still remembers the fear he felt when he was diagnosed with HIV in 1999.
"My heart literally sank to my knees and to my ankles," he said.
That fear is what led the 56-year-old resident of Broward County, Florida, to become a mentor and patient guide for the newly diagnosed. He's a clinical manager at Community Care Resources of Florida, a nonprofit that offers testing for sexually transmitted infections.
Greene said friends and patients feel some of that same panic and alarm as they worry whether federal action will hinder their access to treatments.
President Donald Trump's budget proposal for fiscal year 2026 requests significant reductions to HIV prevention and surveillance programs while preserving other parts of the Ryan White HIV/AIDS Program, the nation's HIV care and treatment safety net.
Meanwhile, the U.S. Senate is considering Trump's "big, beautiful bill," the giant tax and spending plan the U.S. House approved in May. Several of its provisions would affect HIV care, including one that bars clinics that provide abortions - which tend to be testing sites for sexually transmitted infections - from accepting Medicaid.
The bill also would impose work requirements and more frequent eligibility checks on many Medicaid recipients, potentially interrupting coverage for HIV patients who take medications to suppress the virus, which prevents them from infecting others.
At the same time, some state health departments say they have yet to receive official notice from the federal Centers for Disease Control and Prevention that their federal HIV/AIDS grants will be renewed. Renewals are for prevention and surveillance grants through May 2026. That's left county health agencies and nonprofits scrambling for funds to continue HIV/AIDS outreach and testing programs. Some already have laid off staff, including critical disease contact tracers.
For HIV patients and their health care providers, it all adds up to troubling uncertainty.
"People are feeling like they're going to be totally by themselves, and that there's no resources that are going to be available for them," Greene said.
A spokesperson for the U.S. Department of Health and Human Services insisted that HIV/AIDS programs are a high priority for the administration, and will continue under a proposed new agency that would be called the Administration for a Healthy America.
Living longer
People with HIV are living longer because of new drug treatments. But annually, the U.S. sees nearly 32,000 new HIV infections. State and public health agencies rely on contact tracing and public education to try to limit new infections. But they are hindered by persistent stigma surrounding HIV, lack of access to care, homophobia and the fact that a disproportionate number of people with HIV are poor.
Anyone, regardless of sexual orientation, can contract HIV, but Black and Latino men with male partners and Black women and transgender women have disproportionately high infection rates. New infections are more prevalent in the South.
"The operable term is 'safety net.' And you're cutting holes in it. The more holes, the more stuff falls through," said Rob Renzi, chief executive officer of Big Bend Cares, a Tallahassee-based nonprofit that provides HIV services to the surrounding eight-county area of North Florida's sprawling rural communities.
Three dozen North Florida HIV patients rely on housing assistance from the nonprofit, which receives federal funds through Housing Opportunities for Persons With AIDS - one of the initiatives that Trump's budget proposal would eliminate. Without the funds, those residents could become homeless, Renzi said. Another 17 people housed through a separate federal grant the organization uses for previously incarcerated HIV patients could also lose housing.
"Taking an HIV pill is down on your list if you have no food or place to sleep," Renzi said.
Uncertain grants
Emily Schreiber, senior director of policy and legislative affairs at the National Alliance of State and Territorial AIDS Directors, said Wednesday the CDC began rolling out the delayed grants. But the uncertainty has already caused damage.
Raynard Washington, director of the Mecklenburg County Public Health Department in North Carolina, said his agency laid off six workers - including five contact tracers - after it did not receive a grant renewal notice. Contact tracers ensure a person knows about their positive diagnosis and try to identify the patient's partners so they can get care and testing, too.
"The quicker we can close the loop with the contact tracing, can notify partners to get partners tested [and] in treatment, the quicker that we're able to actually stop transmission from happening in the community," Washington said. He added that "the more people that we have accessing prevention services like PrEP, the less opportunity we have for new infections."
Even if the agency receives a renewal notice, rehiring the workers would be costly, he said.
Dr. Thomas Dobbs, dean of population health at the University of Mississippi Medical Center and former state public health officer, said his state's HIV infection rates have remained steady over the past decade. He worries federal cuts and delays will stall progress - and disproportionately hurt marginalized communities.
"People in Mississippi don't have riskier sexual behaviors than people in California," he said. Rather, "the system has not been adequately designed and resourced and engaged to treat them." Dobbs described the cuts as "pretty shortsighted."
Coastal Bend Wellness Foundation in Corpus Christi, Texas, serves a 12-county area that includes many rural communities, said Chief Executive Officer Bill Hoelscher. He said his group relies on federal funds issued through the state for HIV testing and risk reduction.
But a letter from the Texas Department of State Health Services, dated May 30, instructed the nonprofit to refrain from incurring costs starting May 31, as the state hadn't received grant renewal notices from the CDC.
The renewal period for the next grant cycle begins July 1. Hoelscher applied but hasn't yet heard back.
"Usually, we have a renewal in place and we're ready to go by. But we have not heard from them [the CDC]," he said. "If we don't hear from them … then July 1, effectively, there will be no more government-funded HIV testing by us."
In a June 13 letter to the CDC, Texas state health officials asked for a status update on the grants. But as of Wednesday, the state hadn't received a response, said spokesperson Lara Anton.
"We have been writing furiously for emergency funds through other grants, foundations, trying to see if we can get some help to shore it up until we figure out what to do," Hoelscher said.
Skipping pills
In Maryland, many patients participate in a state program that helps pay for HIV medications. The uncertainty about federal money is causing alarm among some patients.
"We have already received calls like, 'Hey, should I start skipping pills? Should I start doing every other day? Do I need to build a war chest of medications?'" said Peter DeMartino, director of infectious disease prevention and health services at the Maryland Department of Health.
The CDC reportedly reinstated several HIV prevention staff that had been part of mass federal layoffs. But DeMartino and health officials in other states say their departments are still missing their federal partners.
DeMartino said one CDC assignee whose position was eliminated had worked at his office for nearly two decades.
Back in Broward County, nonprofits and clinics are struggling to keep programs going as they await federal notices.
"Will there be enough funds?" Greene said. "We're not sure how much money we're going to receive or when it's going to come. So that's a very scary thing."
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Stateline reporter Nada Hassanein can be reached [e-mail].
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