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When Christina Jones tested positive for HIV more than 30 years ago, her doctor predicted she wouldn’t survive to see her three young children grow up.
Jones is now 56, with six grandchildren, and said she’s “blessed and ecstatic” for the miracle of every passing year. Revolutionary medical advances have kept her alive and healthy. Whereas once she ingested 18 pills a day, today she takes just one. What’s more, for the past four years, federal subsidies have helped pay for an insurance plan that makes those pills and her care affordable.
Now, however, Jones, an Orlando case manager for Positively U, a nonprofit support group for people living with HIV, is back to living in fear. Those crucial subsidies, known as enhanced premium tax credits, are due to expire Dec. 31 unless Congress extends them, which is unlikely. On Thursday, the Senate plans to vote on a Democratic proposal to continue the aid, but the chances of it passing are slim.
Barring a major political surprise, Jones’s monthly premiums will balloon from zero to $1,087 starting Dec. 15, when she must start paying for her 2026 coverage. And she’s hearing similar stories from people whom she supports at her job. They worry about losing their protection against an illness that has claimed the lives of more than 700,000 Americans since 1981.
“We’re really scared,” she said. “If they kill these subsidies, they’re basically killing us.”
As with just about everything in the U.S. healthcare system, Jones’ situation is complicated. But it captures the particular vulnerability of people living with HIV as lawmakers consider whether to let the enhanced premium tax credits expire.
After lacking health insurance for most of her adult life, Jones has relied on the federally funded Ryan White HIV/AIDS Program, first authorized in 1990 as a safety net for low- and moderate-income earners. The program pays for medication directly or, increasingly in recent years, by purchasing Affordable Care Act (“Obamacare”) marketplace plans. Roughly half a million Americans — more than half of all those diagnosed with HIV — are supported by this program, according to the healthcare research nonprofit KFF. That includes more than 33,000 Floridians, with 2,455 in Orange County. More than 10,000 people in Orange County are currently living with HIV.
When the enhanced premium tax credits were introduced in 2021, at the height of the COVID-19 pandemic, the ACA marketplace became affordable enough for state and community programs administering Ryan White program funds to cover premiums for more clients. That included Jones. Because she earns less than $34,000 annually, she enrolled in her first affordable plan that year, with free premiums, although she still must pay her deductible and co-pays for doctors’ visits.
Now she worries that the loss of subsidies will strain Ryan White program budgets and threaten patients’ access to care by making marketplace plans far more expensive.
Indeed, Ryan White program funders are “all trying to figure out what they’re going to do,” said Rachel Klein, deputy executive director of The AIDS Institute. “They may not be covering as many drugs; they may be changing eligibility structures, with lower income thresholds, and they could go back to waiting lists, which we’ve had before.”
The price hikes also affect people who pay for their own ACA marketplace plans. People with HIV are particularly vulnerable, given that they are more likely to have marketplace plans than the general public.
Jones knows she can’t afford the new monthly premiums, which she first realized during open enrollment this past month. That would make her one of some 4.8 million Americans expected to lose their marketplace coverage in 2026, according to the Urban Institute.
Nor, she said, can she pay the roughly $1,000 monthly cost of the HIV pills that support her immune system, protecting her from opportunistic infections and certain cancers.
“I suppose I’d have to just stop taking the medications,” she said.
The fight over whether to continue the subsidies has been a sticking point in federal budget negotiations. The number of Americans with marketplace insurance plans has more than doubled since the subsidies began. That includes some 4.7 million Floridians out of 23 million enrolled nationally in the ACA marketplace.
The size of the looming cost hike varies by age, income and plan. Keep Americans Covered, a nonpartisan coalition of health care organizations and consumers, has published estimates that show how steep the jump could be.
In Florida, the coalition projects that a couple in their 60s earning $85,600 a year would pay an additional $27,613, an increase of 421 percent, while a family of four earning $133,750 a year would see premiums increase by $17,423, or 161 percent.
“I’ve been telling my constituents to brace for impact,” said State Rep. RaShon Young (D-District 40), who represents Ocoee, Pine Hills, College Park, Apopka, Maitland, Winter Park and parts of Orlando. “People are going to lose their lives due to the lack of backbone from legislators in our nation’s capital.”
Before the ACA was enacted in 2010, people living with HIV often couldn’t get health insurance because of preexisting conditions. Jones checked into a teaching hospital’s emergency room when bleeding required a hysterectomy, and she put off treatment for her asthma for years. When she finally reached a pulmonologist, tests showed that she lost nearly a third of her lung function.
Such stories may become more common in Orange County and across Florida. The state is one of 10 that hasn’t expanded Medicaid, which explains why more Floridians — some 4.7 million — are enrolled in ACA plans than in any other state. Of those residents, about 1.4 million — or 30 percent — are expected to be priced out of health care coverage without those tax credits, according to the nonprofit coalition Florida Voices for Health.
Florida also ranks third in the nation for HIV diagnoses, behind Texas and California, according to the Centers for Disease Control and Prevention.
Limiting access to health care for people with HIV could reverse many years of progress in fighting the disease, the AIDS Institute has warned. A particular danger involves access to PrEP, or Pre-Exposure Prophylaxis, which protects people who haven’t been diagnosed with HIV against the virus. No national support program, including the Ryan White one, covers PrEP, said Klein.
“If you can’t get health insurance, your access to PrEP goes away,” she added.
Even a modest decline — about 3 percent annually — in PrEP coverage could lead to 8,618 new infections over a decade, with “lifetime medical costs of these infections” estimated at $3.6 billion, according to research published recently in JAMA Network.
“We still have way too many people being diagnosed, but transmissions have come down,” Jones said. “Take away our access and you’re looking at those numbers skyrocketing again.”
