The Florida Department of Health limited access to life-saving drugs for people with HIV without consulting its hand-picked advisory committee charged with maintaining and updating the list of available drugs for the state’s AIDS Drug Assistance Program.
Some members of the HIV Section Medication Formulary Workgroup aren’t sure whether the panel still even exists.
“My understanding is, it’s been disbanded,” Dr. Jonathan Appelbaum, a member of the panel, told Leon County Circuit Judge Jonathan Sjostrom during a recent hearing.
Appelbaum made those comments while testifying in the AIDS Healthcare Foundation’s unsuccessful efforts last month to block the DeSantis administration from unilaterally changing the drug program without public input or adopting formal rules.
Appelbaum isn’t the only panel member to think that. When asked whether the drug workgroup still exists, member Dan Wall said, “Probably not.”
“And I answer it that way because there’s been no formal communication from the state with anybody about anything,” said Wall, assistant director of Miami-Dade County’s Ryan White Program.
Dr. Andrea Sciberras, statewide medical director for the DOH Division of Disease Control and Health Protection, chaired the workgroup. But her position was, she said, abruptly eliminated in January due to budget constraints.
She declined further comment for the record.
DOH Communications Director Brian Wright said the panel remains intact. He told the Phoenix in an email that the workgroup wasn’t consulted about the formulary changes because of tight time constraints.
“Due to quick turnaround after identifying a projected $120 million shortfall that threatened the program’s long-term sustainability, the Florida Department of Health quickly implemented program changes to responsibly manage program resources while maintaining access to critical medications,” he said.
The fate of the AIDS Drug Assistance Program (often called ADAP) — and the way the DeSantis administration has handled it — has created a flurry of activity.
To help shore up the purported deficit, the DeSantis administration announced in January it was making several changes effective March 1. One of the biggest was to reduce the amount someone could earn and qualify for the program from $62,600 annually to $20,748.
The state stopped providing insurance premium assistance to program clients who held Affordable Care Act (or “Obamacare”) policies. And the DeSantis administration removed Biktarvy from the ADAP formulary insured patients can access and limited access to Descovy. Both drugs are antiretrovirus medications.
Amid outcry from HIV patients, legal challenges, and concern from a bipartisan group of lawmakers, the Legislature agreed to appropriate $31 million to ADAP and directed the DOH through June 30 to to return income eligibility to the higher level.
The funding was in HB 697, which DeSantis has signed into law.
However, HB 697 did not require the DOH to put Biktarvy back on the formulary or to increase access to Descovy. And it places in law the ban on insurance premium assistance.
Although the DOH’s Wright said the drug workgroup wasn’t consulted due to time constraints, others, including Applebaum and Wall, say it was because members of the panel might not have approved removing and restricting the drugs.
This isn’t the only time there have been questions about how the DOH has handled decisions related to ADAP.
The Tampa Bay Times previously reported that the department stopped participating in Florida Comprehensive Planning Network on HIV meetings and that the DOH forced out three key employees and a contractor in the HIV/AIDS section.
Other choices
Proposed changes to the formulary are supposed to be run through the HIV formulary work group.
The work group is a multi-disciplinary panel whose members have personal or professional knowledge of HIV, familiarity with clinical treatment, direct experience with clients, and a functional knowledge of Ryan White HIV programs.
Work group members must apply for the position and are vetted.
"To take people who are already on medication, take them off that, in my mind, that's almost like a death sentence. And, as a physician, I ethically oppose that."
– Dr. Jonathan Applebaum
The DOH revised the work group’s charter in 2025. According to that document, the workgroup’s decisions are “purely recommendatory” and subject to final approval by the HIV/AIDS Section administrator.
The new charter makes clear that drugs may be added or removed from the formularies even without review or recommendations by the work group and that the “ultimate decision to modify the formularies will be at the discretion of the Department of Health.”
The panel’s last meeting was on Nov. 14.
The proposed changes to the formulary were never broached with the work group.
“This is a committee of experts and it’s surprising that clinical decisions were made without consulting the panel of experts,” work group member Elizabeth Sherman said.
Sherman, an HIV clinical pharmacy specialist for Memorial Healthcare System, told the Phoenix there was a “general sense” among members in late 2025 that “times were tough, drug prices were up, and we may have to revisit the formulary.”
“In a quick discussion in one of our meetings, we had floated the idea that maybe we could look at the more expensive primary care medicines, like, for example, the GLP1s, the Wegovy’s, and the Ozempics — you know, some of the more expensive medications — if we needed to shrink down our ADAP formulary. The idea of shrinking the anti-retrovirals on the formulary was never floated within our group.”
Although Sherman didn’t go so far as to say she wouldn’t have supported removing Biktarvy or Descovy from the formulary, Appelbaum did.
As witness for the AIDS Healthcare Foundation, Appelbaum explained in court how the HIV virus can mutate when a patient stops taking antiretroviral medications, such as Biktarvy.
When the virus mutates, it can “overcome the medication,” meaning become resistant to the drug, Appelbaum said.
When that occurs, the patient can no longer use the antiretroviral to control HIV.
Biktarvy is a single-tablet medication taken once a day. Appelbaum testified that the pill contains three HIV drugs, and said it’s the most commonly prescribed oral antiretroviral across the country, including in Florida.
“To take people who are already on medication, take them off that, in my mind, that’s almost like a death sentence,” Appelbaum said. “And, as a physician, I ethically oppose that.”
Florida Phoenix is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Florida Phoenix maintains editorial independence. Contact Editor Michael Moline for questions: info@floridaphoenix.com.
