Inside Florida's decision to cut thousands off from affordable AIDS drugs

Gov. Ron DeSantis' administration is blaming rising health care costs and Congress for cutting off life-saving access to affordable AIDS drugs to thousands of Floridians next month.

But the administration's own actions will cripple the program.

Florida is planning to kick patients in the AIDS Drug Assistance Program off their state-paid health insurance, eliminating the initiative's main source of revenue.

And while the state has cited October's government shutdown as the impetus for its decision, the Herald/Times found that Department of Health leadership forced out key employees months earlier and did little to reform the drug program, despite their longstanding frustrations with it.

The decisions leave as many as 12,000 people -- many of whom are members of the LGBTQ+ community, a population DeSantis' policies have targeted -- scrambling to find ways to afford medication that could cost them thousands of dollars per month without the program's subsidies.

"It's like the '90s all over again," said Sharon Murphy, a longtime Florida AIDS certified registered nurse. "They're trying to wipe out our population."

Former employees, health experts and longtime Florida AIDS health advocates say the state is kneecapping the program far beyond what would be necessary to deal with rising health care costs, which they acknowledge are an issue.

No other state has made cuts to Florida's level, even as those states similarly deal with ballooning costs.

As the state has planned changes, it has operated in secrecy. The department's own HIV planning board stopped getting updates about the drug assistance program from the state about a year ago. News about impending changes was initially communicated to health clinics by phone call instead of in writing.

The state made the decision out of the public eye, despite a requirement that it follow a public rule change process. And patients were notified about a week before the end of open enrollment -- a choice that left some in a frenzy to find other coverage.

Health department officials and Surgeon General Joseph Ladapo for weeks gave no specific budgetary explanation for the program cuts to the public or state lawmakers, beyond saying the changes would prevent a $120 million budget shortfall.

The news blindsided lawmakers, who are left with a financial hole advocates want them to fill. The Senate's health care budget chief, Sen. Jay Trumbull, R-Panama City, said he wasn't aware of the issue until an advocate spoke in his committee last month.

When the state gave legislators financial information this week, they didn't offer any option besides eliminating health insurance support, House and Senate lawmakers said.

The Department of Health has not answered questions about program changes sent by the Herald/Times over the last month.

Florida's AIDS Drug Assistance Program helps people afford care in two main ways: by directly providing them with their medicine or by paying for a person's health insurance.

When the program started, it was centered around federal grant money, which the state still receives. But the bulk of funding comes from drug rebate money.

When the state gives the drugs directly, it doesn't make money. Instead, it purchases the drugs at the lower price negotiated for AIDS drug programs with pharmaceutical companies.

But the program has the opportunity to bring in millions in extra revenue when it pays for patient health insurance, often purchased through the Affordable Care Act marketplace. Drug companies incentivize the health insurance support, giving the state rebate money that covers the insurance spending.

Experts say when optimized, those rebate dollars can cover the state's spending on health insurance and bring in extra program money on top of it.

The federal government encourages states to help AIDS patients who have health insurance because it's the most cost-effective way to provide care.

That was a win-win for the state, employees realized. Florida could help more people in need and prevent waitlists. State data also showed that insured patients had better health outcomes.

As the department's premium program took off about a decade ago, the AIDS drug assistance program steadily grew even as federal grant money plateaued. In the most recent fiscal year with data available, rebates from premiums made up two-thirds of the AIDS program's funding -- about $200 million -- and about half of the state's AIDS drug patients were getting insurance help.

"The program was self-sufficient," said Paul Mekeel, the program's former insurance benefits manager.

But former employees say the insurance support program also created tension within the Health Department over the last three years. Because the state often wasn't receiving the rebates until months later, it was putting the program at a deficit while the state waited for reimbursement. The issue came to a head at the end of 2024, when a health organization the state contracts with for its AIDS Drug Assistance Program had not been paid. In March 2025, the department abruptly forced out three key employees and a contractor in the HIV/AIDS section, including its supervisor and the bureau chief.

Mekeel said he was kept around a few more months to explain the rebate program to higher-level staff. He said he pitched putting together a workgroup with other people in AIDS services to hash out rebate concerns, but higher-ups told him no.

In June, he was given a settlement agreement that would force him to resign, he said. He refused to sign and was dismissed from his job. In November, the state stopped allowing new patients to enroll in the AIDS drug premium assistance program. In January, the state announced it would discontinue the premium assistance program entirely.

Ladapo told a Senate committee last month that the changes were a response to Congress not extending the enhanced premium Affordable Care Act tax credits. He also said rebates have "inherent instability." Former employees and observers acknowledge the enhanced tax credits expiring drove up the cost of providing premiums, making the rebates less cost-effective.

But by Florida ending its payment of premiums, it gutted the program's largest source of revenue, forcing the program to survive on more limited state and federal dollars. Without that major budget source, the state can't support all of the roughly 30,000 people who have come to rely on the drug assistance program.

"They threw out the baby with the bathwater," Mekeel said.

Dr. Bob Bollinger, a professor at Johns Hopkins University, said modern HIV medication has taken patients from near-death to healthy, functional adults. But that medication doesn't eradicate the virus, and if left untreated, it can come roaring back.

"For those that are concerned about cost, it costs a whole lot more to take care of somebody who is sick than to put them on medicine and keep them well," Bollinger said.

Other states' programs have also made cuts -- but not nearly to Florida's level. And nearly all state programs offer premium help.

Ladapo told senators that the changes to the program could lead to a crisis. He said "additional resources" could help the department fill the gap but didn't specify what those would be.

Anyone at 400% of the federal poverty level or less can qualify for Florida's AIDS Drug Assistance Program. But the state plans to cap income eligibility at 130% of the federal poverty limit, less than $21,000 a year for one person.

No other state has made such a drastic change. In Pennsylvania, for example, the state is cutting program eligibility from 500% of the federal poverty level to about 350%, which would impact around 1,600 people, according to a report from the National Alliance of State and Territorial AIDS Directors.

And in Kansas, patients who make more than 250% of the federal poverty level will no longer qualify for help with paying their premiums, which would affect about 230 people.

Florida's projected impact, to about 12,000 people, is 50 times that.

Tim Horn, the director of medication access with the National Alliance of State and Territorial AIDS Directors, said the organization would like to help Florida find a "more surgical approach" to address rising cost concerns.

Horn said no other state has ended premium assistance entirely. The group's recent report notes that Florida's health department did not respond to its request for information.

By cutting out the premium assistance program entirely, Florida's program budget will shrink by hundreds of millions of dollars. For thousands of patients who'd been getting insurance subsidies, that means the state would no longer be able to afford to provide their medication via the medication dispense program.

For the people who still qualify for the program, the state is also planning to remove access to the most popular HIV medication -- Biktarvy, a once-a-day pill produced by Gilead Sciences. The state has not said why it chose to remove access to the medicine.

In a statement, a Gilead spokesperson said that Florida's AIDS Drug Assistance Program is critical.

The spokesperson said the company has reached out to the Florida Department of Health in hopes of seeing the state continue to provide patients "open and unrestricted access to the HIV medications that work best for them, including Biktarvy which is considered a standard-of-care and the number one most prescribed HIV medication on the market."

Over the last year, the Department of Health has shielded its decisions in secrecy -- even with its own planning board. That board, called the Florida Comprehensive Planning Network, brings together state, local and community leaders to work toward reducing HIV transmission and deaths, according to the Department of Health website.

The department last year stopped participating in the board's monthly meetings, said Dan Wall, the co-chair for the organization. And when he asked for the financial information of the AIDS Drug Assistance Program more than a year ago, he said he was met with silence.

Wall said he was concerned at the sudden dismissal of senior HIV/AIDS staff on the same day with no explanation.

When the staff was there, Wall said the planning network was kept in the loop, like when the state planned to change which premium plans it was going to cover.

"I slowly over time got a little nervous about them, about the ongoing sustainability of the program financially," he said.

Wall said the state's answer to its financial troubles -- eliminating premiums -- goes in the wrong direction. He said the state should be putting more clients into the most cost-effective health insurance plans that work for the patient and offer the most drug rebate money.

Kevin Maloney, 48, had been enrolled in New York's version of the AIDS drug program while he cared for his dad there.

After his dad's death, Maloney moved to Pinellas Park and tried to enroll in Florida's premium assistance program in November. He was denied.

Maloney, who is HIV-positive with complex health concerns, including heart issues, can't work because of his health issues. He said he couldn't go without coverage, so he scrambled to find a plan on the marketplace, which will cost him $500 a month. He wouldn't need to pay that in New York.

"I did fear moving back to Florida would put me in a position like this," he said.

This week, the health department gave budget information to some state lawmakers. But for about a month, lawmakers, including the Senate budget chairperson, Ed Hooper, were unsure what amount of money was needed to solve the problem.

Hooper earlier this month said a figure cited by the health department -- $120 million -- was a lot in a year when lawmakers were trying to tighten spending.

"We know we're doing something, we just don't know what level yet," Hooper said. "We know it's important."

DeSantis' administration has not asked the state for more money.

To make the changes to the state AIDS program, the department has to go through a rulemaking process, which is open to the public. It didn't -- and the AIDS Healthcare Foundation, the largest AIDS service provider, sued the state as a result.

Suzanne Stevens worked for the state's HIV/AIDS section when the department tried to change program eligibility in 2010. At rulemaking meetings across the state, Stevens said busloads of frustrated people came to speak out. The state ultimately kept the program as-is.

About a week after last month's lawsuit from the AIDS Healthcare Foundation, the state announced its plan to go through the rulemaking process.

"They knew they needed to do rulemaking," she said. "They made a choice not to."

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