Earlier this year, Tori Samuel — 43 and diagnosed with HIV when she was 19 — got quite a scare. Her home state of Florida announced that, because of a supposed budget shortfall of $120 million, it was going to dramatically cut the annual income eligibility cap for the AIDS Drug Assistance Program (ADAP) from about $60,000 yearly for individuals to about $20,000, which is just slightly above the current federal poverty limit. ADAP is a longstanding federal/state initiative that provides free HIV medications or health care coverage support to people living with HIV who have low incomes.
In Florida alone, ADAP covers about 32,000 people, including Samuel, who recently reduced her job as an HIV services provider at the Florida health department to part-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 feeling very unsure and scared,” she says of this realization. Florida had also announced that its ADAP would stop covering a single-pill-a-day HIV regimen that Samuel takes.
Frantic, Samuel applied to see if she was eligible for Medicaid in Florida. She also threw herself into the statewide activist effort to get Florida to reverse or mend its decision, speaking at a rally in Tallahassee, the state’s capital, and telling her story to both The Washington Post and her local paper in Ocala. The efforts paid off: In mid-March, Samuel was one of thousands of Floridians living with HIV and their allies who breathed a huge sigh of relief when the state’s GOP-led legislature shored up about $30 million for Florida ADAP.
That amount is supposedly enough to roll back the income eligibility cut, but not enough to keep providing her current regimen. The funds may instead be enough to continue paying premiums for plans through the Affordable Care Act (ACA, or Obamacare) that are used by Floridians with HIV, as Florida ADAP had once done and most state ADAPs nationwide continue to do.
Either way, the sigh of relief is temporary: the $30 million is only through June. The state legislature will have to decide if and how it wants to keep funding ADAP beyond that.
So for now, Samuel’s access to HIV meds and care is OK — but she calls how Florida handled the cuts announcement “a complete mess” (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 activist grapevine). And, she says, “my fear is that other states start mimicking Florida.” In fact, as of mid-March, 20 states are either enacting or considering cuts to their own ADAP programs, although so far none as drastic as what was on table in the Sunshine State.
Samuel’s barely-averted fiasco underscores just how fragile HIV meds and care coverage can be in the United States, which does not have universal health care as do most other wealthy nations. Things are especially fragile right now, as a Trump-dominated, GOP-led Congress has not only declined to extend COVID-era subsidies that made ACA plans more affordable for many Americans but has also passed burdensome new criteria for Medicaid that analysts say could knock millions off the program next year.
Add to that the fact that the cost of both health-plan premiums and meds continues to rise and yet ADAP has remained flat-funded for a decade and it all means one thing: Yes, there is usually a way for an American to access HIV meds and care, but often it’s not straightforward or even guaranteed to last.
“Americans with HIV are covered via everything from work-linked insurance to Obamacare ACA plans to Medicaid, Medicare, ADAP or beyond, and sometimes it’s a shifting overlap of these things,” says Tim Horn, the director of medication access and pricing at NASTAD, which helps officials administer HIV programs across the country and around the world. “But precisely because all these pathways are subject to changes such as job loss and/or government funding fluctuations, few of them are really a lifelong coverage guarantee. It takes real expertise and persistence to know how to navigate these options, which is why I often suggest that folks living with the virus work with an expert at a place like their local HIV/AIDS services agency. Trying to do it alone can sometimes drive you nuts!”
Whether you are needing coverage for HIV meds and care for the first time or facing a possible coverage change like Samuel was, here are the main options:
>Work-linked coverage. In this case, you have a health plan through your job with variable monthly costs out of your paycheck, deductibles and cost-sharing and copays for all meds — not just for HIV. However, despite this being a time of flux for ADAP, many state ADAPs will still help you meet those out-of-pocket costs if you are income-eligible, with eligibility varying by state. (Look up any state’s current eligibility cut-offs here.) You can also contact your nearest HIV/AIDS services agency or state health department for help.
>ACA/Obamacare plans. These are plans you can buy off your state marketplace, or the federal marketplace if your state doesn’t have its own. However, recent legislative changes have spiked prices on these often already-expensive plans, such that a halfway-decent plan that cost an individual about $700 a month last year could now cost up to twice that. Yes, there are government subsidies if you are income-eligible, but even with them, the plans can still cost an arm and a leg — and often that’s just for monthly premiums (plan fees) and not meeting deductibles or co-pays/cost sharing. For all these reasons, consider calling your local HIV/AIDS agency or health department to ask for help choosing a plan — and to see if you are eligible for ADAP picking up premium and other costs.
>Medicaid and/or Medicare. If your income qualifies (the definition of that varies by state), you can get not just HIV meds and care but general health care coverage through Medicaid, although legislation passed in 2025 will tighten eligibility criteria. If you are over 65, you are eligible for Medicare. If you are over 65 (or below 65 but with certain disabilities) and have a low income, you may qualify for both programs, which generally provides a high degree of coverage. Additionally, you may be eligible for ADAP assistance with your Medicare Part D premiums or cost-sharing. Even more reason to find an expert, usually at an HIV/AIDS services agency or some other social services nonprofit, to help you sort this all out.
>ADAP alone. If you have no other access to health care, that’s where ADAP comes in, as long as you are income-eligible. (Again, this varies by state, but as of early 2026, if you make about $80,000 yearly or less — more if your household has multiple residents — you are still probably eligible in most states.) As noted, ADAP can work two ways: it can connect you to free HIV meds and care directly (and ADAP-friendly care centers are often the best HIV care centers around) or it can usually pay for ACA/Obamacare premiums and other expenses like copays.
If you can’t access ADAP, you still have some options. (See our “Additional Options” sidebar.) Says Horn, “Admittedly, with recent legislative cuts, it’s a precarious 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 way to get covered. Hopefully we’ll get more abundant and less complex options in the future.”
As for Samuel, she’s relieved her ADAP is spared for now but says she’s still researching other coverage options if Florida fails to extend ADAP funding past June 30. Plus, she notes, Florida ADAP still excludes her preferred regimen, which she is determined to stay on.
Her final thoughts about the hoops her state has made her jump through just to stay on the medication of her choice? “It’s a lot of work.”
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