If I stopped taking the medication that suppresses my HIV, at first I’d feel fine. But over the next few months, my viral load would rise. In the first year or two, it might cause minor havoc (swollen glands, skin rashes). After a few years, it would become AIDS. Night sweats would likely drench my sheets. Wasting would make me look starved. Life-threatening infections, like PCP pneumonia, would become common. Within a decade of stopping meds, I might be dead.

When there were not any effective HIV drug regimens, this was a common trajectory. About 510,000 people died of AIDS in the U.S. between 1981 and 1996. In the late 1990s, a breakthrough “cocktail” of HIV meds became available. Since then, treatment options have become more abundant and easier to take, and in the United States, HIV-related mortality rates have plunged. There were some 43,000 deaths here in 1995. In 2023, there were slightly under 4,500.

But now there’s risk of a backslide. States across the country are considering cuts to a program that covers about a quarter of the roughly 1.2 million people in the U.S. living with HIV. Tens of thousands could soon lose access to medication.

The most extreme example is in Florida. Early this month, the state government drastically reduced access to its AIDS Drug Assistance Program, a long-standing federal initiative operated and partly funded by states that provides free or subsidized HIV meds and care. Claiming a $120 million budget shortfall, Florida chopped the annual income-eligibility cutoff for ADAP from about $64,000 (in line with many other states) to about $21,000. Half of the 32,000 Floridians who depend on ADAP would lose coverage.

Earlier this month, after HIV-activist lobbying, the Florida legislature passed a bill allocating $31 million to keep some of those 16,000 on their meds. Governor Ron DeSantis signed the bill into law last week, but the money lasts only through June. Fully funding ADAP past that would require Florida’s GOP-led legislature to find at least $120 million in the budget.

“It’s so scary,” Tori Samuel, 43, told me. Diagnosed with HIV at 19, Samuel, a mother of three who lives in Ocala, is among the Floridians who were temporarily pushed off ADAP because of the cuts. She threw herself into the fight to save the program, testifying at the capitol in Tallahassee and telling her story to the Washington Post and several Florida publications. She’s relieved that some of the funding will be made up. “But what happens beyond June?” she asked me.

ADAP programs work both to help save lives and to stop the epidemic’s spread: Medically suppressed HIV cannot be transmitted. A recent Johns Hopkins study calculated that if Congress were to eliminate the Ryan White CARE Act, which houses ADAP, new HIV infections across 31 major U.S. cities would rise nearly 50 percent by 2030. Even changes to coverage for a small group can have a profound effect. The study’s leaders preliminarily estimate that if 16,000 ADAP recipients in Florida lost coverage, new infections there could increase by 28 percent through 2030.

“The U.S. has made tremendous progress in HIV control over the past three decades, in part because treatment of HIV is also prevention of HIV,” Anthony Fojo, a doctor at the Johns Hopkins University School of Medicine and the study’s senior author, wrote in an email. “Cuts to ADAP threaten to imperil that progress. Not only could we return us to a time where people died of AIDS at high rates, but we could see the first rise in HIV incidence in decades.”

A new spike in HIV is not guaranteed to happen. For decades, the Ryan White CARE Act has had broad bipartisan support — even if some right-wing members of Congress have tried to hack into it in recent years. The problem now is that the program is increasingly spread thin. The federal portion of ADAP money has been flat funded at $900 million annually for more than a decade, even as cuts in subsidies and rising premiums have increased the price of Affordable Care Act plans (which state ADAPs often help pay) and HIV-med prices have risen.

Florida is far from alone in targeting the program for cuts. Currently, more than 20 other states often citing budget shortfalls, including blue states like Rhode Island and Delaware, have already enacted reductions or are considering limiting ADAP, according to the National Alliance of State and Territorial AIDS Directors. Many of these states are considering smaller changes to the program, such as dropping the annual income maximum from nearly $80,000 to less than $56,000. The change would still leave many untreated — and highly infectious.

There is a broader federal step-back from stopping the spread of HIV as well. The Trump administration has held up CDC money for states to help track and prevent HIV. And it tried to gut the President’s Emergency Plan for AIDS Relief, the highly effective U.S. global AIDS-relief program started by President George W. Bush, which until recently was considered a crown jewel of public-health aid efforts worldwide.

To some extent, these cutbacks have taken HIV-AIDS advocates by surprise. In Trump’s first term, longtime government health officials managed to convince the president to get behind an initiative called Ending the HIV Epidemic in the U.S. The program aimed to bring new infections to a low enough point by 2030 that experts would no longer consider it an epidemic.

Hailed by some HIV advocates and Trump himself in his 2019 State of the Union address, the program layered millions of new dollars on top of preexisting funding like ADAP to help states beef up their anti-HIV response. The fate of the initiative is up in the air, and there are far fewer advocates in this administration for such campaigns. All health matters in D.C. are now overseen by Health and Human Services secretary Robert F. Kennedy Jr., who has repeatedly questioned whether the HIV virus causes AIDS.

If the U.S. HIV response continues to backslide, certain segments of the population will be affected far more than others. Today, a disproportionate share of the roughly 40,000 new HIV cases per year in the U.S. are in Black and Hispanic gay and bisexual men, especially in the South. Cisgender Black women make up far more new cases than their white counterparts. (Transgender women are also disproportionately affected.)

This means we’re on track to accelerate preexisting inequalities in the country’s health landscape. Tim Horn, who covers HIV-care access at NASTAD, the national consulting nonprofit, told me, “Wealthier and well-employed people with work-linked coverage will generally be okay, but anyone who relies on government intervention for their health care will be squeezed ever tighter or shut out completely.”

I have benefited firsthand from ADAP. Currently, I’m among the lucky ones because I have quality insurance linked to my spouse’s job, but for several years as a freelancer making well under six figures, I qualified for New York State’s ADAP. It covered the premiums and co-pays on my self-employed Obamacare plans. State workers repeatedly helped me navigate the logistical complexities of proving I qualified for coverage because the state was invested in those on HIV meds staying on their HIV meds — both for their own health and to stop the virus’s forward spread.

That’s what a good coverage program does. And it should overprovide, rather than underprovide, to keep people from falling through the cracks. What’s happening in Florida right now is the opposite. Even if some version of the program is preserved, the confusion over coverage could lead to the least persistent and savvy residents who rely on these meds to simply give up trying to access them.

For decades, legions of researchers, lawmakers, activists, and regular people with HIV have jumped through hoops trying to get these drugs to everyone who needs them. The thought that we could fall backward, after all that protesting and lobbying and telling of our own stories to get people to care, is unbearable.

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