Following the slashing of hundreds of thousands of dollars from Florida’s AIDS Drug Assistance Program, AIDS Healthcare Foundation filed a lawsuit against the Florida Department of Health over what it says was an illegal change to income eligibility thresholds for the lifesaving program.

The Florida Department of Health announced two weeks ago that it would make sweeping cuts to ADAP, dramatically changing how many Floridians qualify for the state-funded medical coverage — without using the formal process required to change eligibility rules. As a result, AHF filed a petition Tuesday in Tallahassee with the state’s Division of Administrative Hearings, seeking to prevent more than 16,000 Floridians from losing coverage.

The medications covered by ADAP work by suppressing HIV-positive people’s viral load — making the virus undetectable in blood tests and unable to be transmitted to others.

Prior to the eligibility change, the Florida Department of Health covered Floridians earning up to 400 percent of the federal poverty level — or $62,600 annually for an individual. Under the new policy, eligibility would be limited to those making no more than 130 percent of the federal poverty level, or $20,345 per year.

The National Alliance of State and Territorial AIDS Directors estimates that more than 16,000 patients in Florida will lose coverage under the state’s ADAP because of this illegal change in department policy. Florida’s eligibility changes would also eliminate access to biktarvy, a widely used once-daily medication for people living with HIV/AIDS.

Under Florida law, when a state agency seeks to make a major policy change, it must either follow a formal rule-making process under the Florida Administrative Procedure Act or obtain direct legislative authorization.

AHF alleges the Florida Department of Health did neither.

Typically, altering eligibility for a statewide program requires either legislative action or adherence to a multistep rule-making process, including: publishing a Notice of Proposed Rule; providing a statement of estimated regulatory costs; allowing public comment; holding hearings if requested; responding to challenges; and formally adopting the rule. According to AHF, none of these steps occurred.

“Rule-making is not a matter of agency discretion. Each statement that an agency like the Department of Health issues that meets the statutory definition of a rule must be adopted through legally mandated rule-making procedures. Florida has simply not done so here,” said Tom Myers, AHF’s chief of public affairs and general counsel. “The whole point of having to follow procedures and rules is to make sure any decisions made are deliberate, thought through, and minimize harm. Floridians living with HIV and the general public’s health are at stake here and jeopardized by these arbitrary and unlawful DOH rule changes.”

AHF has multiple Ryan White CARE Act contracts in Florida, including four under Part B, which covers ADAP. More than 50 percent of people diagnosed with HIV receive assistance from Ryan White programs annually.

According to an AHF advocacy leader who spoke with the Washington Blade, the move appears to have originated at the state level rather than being driven by the federal government — a claim that has circulated among some Democratic officials.

“As far as we can tell, Congress flat-funded the Ryan White and ADAP programs, and the proposed federal cuts were ignored,” the advocacy leader told the Blade on the condition of anonymity. “None of this appears to be coming from Washington — this was initiated in Florida. What we’re trying to understand is why the state is claiming a $120 million shortfall when the program already receives significant federal funding. That lack of transparency is deeply concerning.”

Florida had the third-highest rate of new HIV infections in the nation in 2022, accounting for 11 percent of new diagnoses nationwide, according to KFF, a nonprofit health policy research organization.

During a press conference on Wednesday, multiple AHF officials commented on the situation, and emphasized the need to use proper methods to change something as important as HIV/AIDS coverage availability in the sunshine state. 

“We are receiving dozens, hundreds of calls from patients who are terrified, who are confused, who are full of anxiety and fear,” said Esteban Wood, director of advocacy, legislative affairs, and community engagement at AHF. “These are working Floridians — 16,000 people — receiving letters saying they have weeks left of medication that keeps them alive and costs upwards of $45,000 a year. Patients are asking us, ‘What are we supposed to do? How are we supposed to survive?’ And right now, we don’t have a good answer.”

“This decision was not done in the correct manner. County health programs, community-based organizations, providers across the state — none of them were consulted,” Wood added. “Today is Jan. 28, and we have just 32 days until these proposed changes take effect. Nearly half of the 36,000 people currently on ADAP could be disenrolled in just over a month.”

“Without this medication, people with HIV get sicker,” Myers said during the conference. “They end up in emergency rooms, they lose time at work, and they’re unable to take care of their families. Treatment adherence is also the best way to prevent new HIV infections — people who are consistently on these medications are non-infectious. If these cuts go through, you will have sicker people, more HIV infections, and ultimately much higher costs for the state.”

“Patients receiving care through Ryan White and ADAP have a 91 percent viral suppression rate, compared to about 60 percent nationally,” the advocacy leader added. “That’s as close to a functional cure as we can get, and it allows people to live healthy lives, work, and contribute to their communities. Blowing a hole in a program this successful puts lives at risk and sets a dangerous precedent. If Florida gets away with this, other states facing budget pressure could follow.”

The lawsuit comes days after the Save HIV Funding campaign pressed Congress to build bipartisan support for critical funding for people living with or vulnerable to HIV. In May of last year, President Donald Trump appeared to walk back his 2019 pledge to end HIV as an epidemic, instead proposing the elimination of HIV prevention programs at the Centers for Disease Control and Prevention and housing services in his budget request to Congress.

House appropriators, led by the Republican majority, went further, calling for an additional $2 billion in cuts — including $525 million for medical care and support services for people living with HIV. 

While Senate appropriators ultimately chose to maintain level funding in their version of the spending bills, advocates feared final negotiations could result in steep cuts that would reduce services, increase new HIV infections, and lead to more AIDS-related deaths. The final spending package reflected a best-case outcome, with funding levels largely mirroring the Senate’s proposed FY26 allocations.

“What the state has done in unilaterally announcing these changes is not following its own rules,” Myers added. “There is a required process — rule-making, notice and comment, taking evidence — and none of that happened here. Before you cut 16,000 people off from lifesaving medication, you have to study the harms, ask whether you even have the authority to do it, and explore other solutions. That’s what this lawsuit is about.”