Earlier this year, Tori Samuel \u2014 43 and diagnosed with HIV when she was 19 \u2014 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.\u00a0<\/p>\n
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. \u201cI was heartbroken and feeling very unsure and scared,\u201d 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.<\/p>\n
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\u2019s 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\u2019s GOP-led legislature shored up about $30 million for Florida ADAP.<\/p>\n
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.\u00a0<\/p>\n
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.\u00a0<\/p>\n
So for now, Samuel\u2019s access to HIV meds and care is OK \u2014 but she calls how Florida handled the cuts announcement \u201ca complete mess\u201d (she says she was one of many people who didn\u2019t even get a warning letter from the state, instead hearing about the cuts through the activist grapevine). And, she says, \u201cmy fear is that other states start mimicking Florida.\u201d 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.<\/p>\n
Samuel\u2019s 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.\u00a0<\/p>\n
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\u2019s not straightforward or even guaranteed to last.\u00a0<\/p>\n
\u201cAmericans with HIV are covered via everything from work-linked insurance to Obamacare ACA plans to Medicaid, Medicare, ADAP or beyond, and sometimes it\u2019s a shifting overlap of these things,\u201d 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. \u201cBut 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!\u201d<\/p>\n
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:<\/p>\n
>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 \u2014 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\u2019s current eligibility cut-offs here<\/a>.) You can also contact your nearest HIV\/AIDS services agency<\/a> or state health department<\/a> for help.\u00a0<\/p>\n