Earlier this year, Tori Samuel – 43 and diagnosed with HIV when she was 19 – had a terrible scare. Her state of Florida has announced that due to a projected $120 million budget shortfall, it will dramatically reduce the annual income eligibility for the AIDS Drug Assistance Program (ADAP) from $60,000 to about $20,000 for individuals, which is slightly above the current federal monetary threshold. ADAP is a long-standing federal/state initiative that provides subsidized HIV medication or health care coverage to people living with HIV who have low incomes.
In Florida alone, ADAP covers about 32,000 people, including Samuel, who recently cut his job as an HIV service provider at the Florida Department of Health to half-time to make more time for parenting. But even with the pay cut, she was still about $3,300 over the new ADAP income limit. “I was heartbroken and so unsure and scared,” she says of the feeling. Florida also announced that its ADAP would stop covering the daily HIV regimen that Samuel takes.
Frantic, Samuel asked to see if she qualified for Medicaid in Florida. She also threw herself into active statewide efforts to get Florida to reverse or reform its decision, speaking at a rally in the state capital of Tallahassee and telling her story to both the Washington Post and her local newspaper in Ocala. The effort paid off: In mid-March, Samuel was one of thousands of Floridians living with HIV and their allies who breathed a sigh of relief when the state’s GOP-led legislature spent nearly $30 million on Florida ADAP.
This amount is enough to reduce the earning capacity, but not enough to provide her current diet. Funds would instead be sufficient to continue premium payments through the Affordable Care Act (ACA, or Obamacare) for plans used by Floridians with HIV, as Florida ADAP once did and many state ADAPs across the country continue to do.
However, the sigh of relief is short-lived: $30 million only until June. State legislatures must decide whether and how they want to maintain ADAP funding beyond that.
So for now, Samuel’s access to HIV drugs and care is fine — but she says how Florida handled the cut announcement is “totally messed up” (she says she was one of many people who didn’t even get a warning letter from the state, instead hearing about the cuts through the active grapevine). And, he says, “My fear is that other states will start imitating Florida.” In fact, as of mid-March, 20 states were either implementing or considering cuts to their ADAP programs, though none so far have been as drastic as the ones on the table in the Sunshine State.
Samuel’s narrowly avoided failure highlights how fragile coverage of HIV drugs and care can be in the United States, which lacks universal health care like other rich countries. Things are especially critical right now, as the Trump-dominated, GOP-led Congress has not only refused to extend the COVID-era subsidies that made ACA plans more affordable for many Americans but also passed sweeping new standards for Medicaid that analysts say could cut millions out of the program next year.
Add to that the fact that both health plan premiums and drug costs continue to rise and yet ADAP funding has remained flat for a decade and it all means one thing: Yes, there is usually access to HIV drugs and care for an American, but often it is not straightforward or even guaranteed to continue.
“Americans with HIV are covered through everything from employment-related insurance to Obamacare ACA plans to Medicaid, Medicare, ADAP or beyond, and sometimes it’s a change of those things,” says Tim Horne, director of drug access and pricing at NASTAD. “But precisely because all of these avenues are subject to changes such as job loss and/or government funding changes, some of them are actually guaranteed life coverage. It takes real skill and persistence to know how to navigate these options, which is why I often recommend that HIV-infected people work with a specialist at a place like their local HIV/Nuts agency. Sometimes you can only do TAIDS services!
If you need coverage for HIV drugs and care for the first time or are facing a potential coverage change such as a simulation, here are the main options:
>Work-related coverage. In this case, you have a health plan through your job that covers variable monthly costs from your wages, deductibles and cost-sharing and copays for all drugs—not just HIV. However, even though it’s a rolling time for ADAP, most state ADAPs will help you meet out-of-pocket expenses if you’re income-eligible, with eligibility varying by state. (See each state’s current eligibility criteria here.) You can also contact your nearest HIV/AIDS service agency or state health department for assistance.
>ACA/Obamacare plans. These are plans you can buy through your state marketplace or the federal marketplace if your state doesn’t have one. However, recent legislative changes have raised the prices of many of these already expensive plans, such as a decent halfway house plan that cost about $700 a month last year can now cost twice as much. Yes, there are government subsidies if you qualify, but even with them, plans can still cost an arm and a leg – and often it’s just for monthly premiums (plan fees) and not for deductibles or co-payments/cost-sharing. For all of these reasons, call your local HIV/AIDS agency or health department to ask for help choosing a plan — and to see if you qualify for ADAP premiums and other costs.
>Medicaid and/or Medicare. If you’re income-eligible (the definition varies by state), you can get not only HIV medication and care but general health coverage through Medicaid, although legislation passed in 2025 will tighten eligibility criteria. If you are over 65, you are eligible for treatment. If you are over 65 (or under 65 but with some disability) and have a low income, you may be eligible for both programs, which generally provide higher levels of coverage. Additionally, you may qualify for ADAP assistance with your Medicare Part D premiums or cost sharing. Even more reason to find an expert, usually at an HIV/AIDS service agency or some other social service nonprofit, to help you sort it all out.
>ADAP only. If you no longer have access to health care, that’s where ADAP comes in, as long as you’re eligible. (Again, this varies by state, but starting in 2026, if you make about $80,000 or less a year — if your household has multiple residents — you’re still eligible in most states.) As mentioned, ADAP can work in two ways: It can connect you directly to HIV medication and care (and ADAP-friendly centers are often the best care centers for HIV) ACA/Obamacare premiums and other costs such as copays.
If you can’t access ADAP, you still have some options. (See our “Additional Options” sidebar.) Horn says, “Admittedly, with the recent legislative cuts, it’s a dangerous and nerve-wracking time for health coverage overall, especially if you have a serious condition like HIV. But if you’re persistent and if you enlist some outside help, you can generally find a more complicated way to find a more complicated path. Options in the future.”
As for Samuel, she’s relieved that ADAP is safe for now but says she’s still researching other coverage options if Florida fails to extend ADAP funding by June 30. Plus, she noted, Florida’s ADAP still doesn’t have her preferred regimen, which she’s determined to stick with.
Her final thoughts on the hops her state jumped to stick to her favorite drug? “It’s a lot of work.”
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