Thousands of low-income people living with HIV could be losing drug coverage as states impose limitations on HIV assistance programs amid constrained budgets — raising alarms over consistent access to lifesaving medications.

Many factors are putting budget constraints on state programs, including federal funding — which has remained flat for years and hasn’t been adjusted for inflation — increased drug costs and rising insurance premiums.

The Ryan White HIV/AIDS Program is the national safety-net program supporting more than 600,000 low-income people living with HIV across the nation. States receive federal grants and drug rebate money — the latter making up the bulk of state program budgets — to, among other things, help pay for medications and support community groups and specific populations, such as women and children.

Congress has kept key drug assistance funding at $900.3 million annually since 2014. New enrollments for state programs jumped 30% from 2022 to 2024, in part because states cut off pandemic-era Medicaid assistance.

As of January, at least 18 states have pulled back their Ryan White AIDS Drug Assistance Programs, known as ADAPs, in some way, according to a March 2 analysis by health research group KFF and a report by the National Alliance of State and Territorial AIDS Directors, which offers consultation for states.

There are roughly 1.2 million people in the United States living with HIV, and about 1 in 4 people get support from a state drug assistance program.

A disproportionate number of HIV/AIDS patients are gay, bisexual and other men who have male-to-male sexual contact, according to the federal Centers for Disease Control and Prevention. LGBTQ+ communities have been targeted in recent years by some federal and state policies, including the rollback of civil rights, shutting down a youth mental health hotline, restricting health care access, and imposing discussion and book bans in public schools.

Florida has introduced the most dramatic restrictions on income eligibility for its HIV drug program — cutting individual eligibility for the program from 400% of the federal poverty level to 130%. That means uninsured and underinsured people up to that 400% poverty line no longer have coverage under the program.

That’s roughly slashing maximum annual income of $63,840 for an individual down to $20,748. The state says the change will prevent a $120 million shortfall.

“(That) creates an immense coverage cliff,” for example, for childless adults not eligible for Medicaid, said Amber Tynan, CEO of Big Bend Cares, a North Florida Ryan White provider. Florida is among the 10 states that haven’t expanded Medicaid eligibility under the Affordable Care Act.

Florida’s department of health didn’t respond to Stateline’s request for comment.

Delaware, Kansas, Pennsylvania and Rhode Island have also reduced income eligibility for their programs, but to a lesser extent, according to KFF. For example, Kansans with HIV/AIDS whose incomes are above 250% of the federal poverty level won’t be eligible for help with Obamacare insurance premiums. That change will affect about 230 people, the National Alliance of State and Territorial AIDS Directors estimates.

In Pennsylvania, about 1,600 people will lose HIV drug assistance coverage as the state imposes income eligibility caps at 350% of the federal poverty level.

“We cannot continue to provide services at a certain level when the funding to do so does not exist,” Neil Ruhland, Pennsylvania Department of Health press secretary, told Stateline in a statement. He pointed to drug costs and enrollment numbers that are “steadily rising while funding remains stagnant.”

Florida also is removing the brand-name drug Biktarvy, which is the only single-tablet HIV medication regimen recommended by national guidelines for those starting treatment and is the most widely prescribed antiretroviral medication nationally. There is no generic form.

The medication is highly effective at reducing a person’s viral load, meaning the virus is undetectable in blood tests and untransmittable to others.

Eighty percent of Floridians with HIV who are in the state’s program use Biktarvy, Tynan said.

“Not having the opportunity to stay on lifesaving treatment is creating quite the panic and crisis for our population,” Tynan said. “For decades we’ve worked to turn HIV from a fatal diagnosis into a manageable chronic condition, and that progress depends on one thing: consistent access to treatment. When that stability is disrupted like it has (been) in Florida, it creates real risk for patients and for public health.”

Other states (Arizona, Michigan, Pennsylvania, Rhode Island, Virginia and Washington, plus the District of Columbia) also are considering limiting which drugs they cover, according to the alliance’s report.

And several other states may impose other limits to their drug assistance program. Health agencies in Hawaii, Idaho, Montana, New Jersey, South Carolina, Virginia and Washington are considering cutting funding for core medication and support services. Others are considering implementing a six-month recertification period, restricting eligibility, putting caps on expenditures, changing covered medications and lowering assistance for insurance premiums.

While no state has implemented a waiting list for drug assistance, three states — Arkansas, Louisiana and New Jersey — are considering one as a future cost-containment measure, according to the national alliance’s report.

Dr. Sabrina Assoumou, an infectious disease physician at Boston Medical Center, said many of her HIV patients are under-resourced and rely on her state’s Ryan White program. She added that she’s relieved Massachusetts’ program hasn’t announced any changes as of February, when the alliance’s report was released, but that she’s worried for patients in the other states.

“We’ve taken HIV from a very serious virus, a deadly virus when it was first discovered in the ’80s, to a very manageable chronic condition because of the medicines,” she said. “It is concerning to see … that we’re sort of moving backwards by not providing that kind of care that’s so much needed, and that’s lifesaving.”

Florida bypassed a rulemaking process when it announced its changes days before open enrollment ended. In late January, the AIDS Healthcare Foundation, a global nonprofit agency, sued the state department of health over the changes. The U.S. Centers for Medicare & Medicaid Services opened a new enrollment period for Floridians losing coverage to enroll in a different marketplace plan.

In late February, Florida issued an emergency rule putting the new eligibility requirements into effect. About 32,000 Floridians get help from the state program in some way — whether it’s through local health departments or the state helping to pay for insurance premiums.

Half of those, around 16,000, will lose coverage entirely — but many others will be affected in other ways, such as losing access to Biktarvy.

“So if you remain in the program, there’s a very high likelihood that you’re still going to be impacted by some of the other changes, like the dropping of the premium assistance, the elimination of Biktarvy from the formulary,” said Tim Horn, director of medication access for the National Alliance of State and Territorial AIDS Directors. “When you take a look at all of these changes in the net, the vast majority of Florida ADAP clients are going to be impacted by this, one way or another.”

Stateline reporter Nada Hassanein can be reached at nhassanein@stateline.org.