Patients who rely on the Affordable Care Act marketplace insurance are contending with how they’ll afford HIV medication in the face of rising insurance premiums.
Currently, Florida marketplace insurance customers are facing large premium increases for the 2026 open enrollment period. That’s due to the expiration of an enhanced premium tax credit that made ACA insurance affordable.
Places, like Central Florida, that are deeply affected by HIV are facing a one-two punch with rising premiums and cuts to HIV testing and prevention. That’s especially tough news for Florida, which has the third most HIV diagnoses in the country behind Texas and California, according to the Centers for Disease Control and Prevention.
The Trump administration’s proposed budget included about $800 million in cuts to HIV research and prevention funding at the CDC, according to KFF estimates. That includes funding started by President Donald Trump through the End the HIV Epidemic Initiative.
In 2019, Orange County was one of 48 priority jurisdictions in the country due to its high rate of new diagnoses, according to the CDC. There were 450 new diagnoses in 2023.
As open enrollment continues, HIV-focused primary care centers, like Pineapple Healthcare, are hearing concerns from patients that they’ll be unable to afford life-saving medication.
“People are already coming to us saying, ‘I can’t afford my premium. What am I going to do? I’m living with HIV. I am on a chronic condition that needs medication daily to be able to live,” said Ethan Suarez, executive director at Pineapple Healthcare.
Orange County has over 10,000 people living with HIV. It’s the third-highest HIV population in Florida.
In Florida, 98% of those enrolled in the marketplace receive the enhanced tax credit, according to KFF. In Orlando, 189,000 are predicted to be priced out of the insurance, according to a report by Democratic members on the U.S. House Budget Committee.
A family of four earning $64,000 could see premiums jump by 100%.
Suarez said some Pineapple patients are seeing even higher increases.
“They’re saying like, Oh, well, my premium is going to jump from $200 a month to $900 a month. That’s unaffordable,” Suarez said. “The medication monthly cost is over $2,000 a month just for the medication that they need to survive.”
If patients cannot access their medication with insurance, they may still be able to receive assistance through the Ryan White program, which funds the AIDS drug assistance program. The Ryan White program is also facing proposed cuts to its testing and prevention efforts.
Suarez said the cuts don’t just stymie any progress made in reducing HIV; they also exacerbate stigma surrounding the disease. In 2019, it was Trump who announced the ambitious goal of reducing HIV cases by 90% in 2030 through his End the HIV Epidemic Initiative, but the administration today has done a 180 on its stance, Suarez said.
“It’s just very cruel that he’s targeting these marginalized communities,” he said. “HIV is not a death sentence anymore. It is a manageable disease. You can take your medication daily and you’re going to live a long, happy, healthy life.”