Florida guts its AIDS Drug Assistance Program

Sudden changes announced by the Florida Department of Health (DOH) could leave thousands of Floridians living with HIV scrambling to find new medications and another way to pay for their health care. Starting March 1, the state’s AIDS Drug Assistance Program (ADAP) will cap eligibility for HIV meds at 130% of the Federal Poverty Level (FPL), a substantial drop from the current 400% of FPL. The move could mean that as many as 16,000 people with HIV will no longer qualify for ADAP. In addition, the state is dropping Biktarvy, the most prescribed HIV medication, from its formulary, and restrict Descovy to people with renal insufficiency.

Officials have not stated a plan for transitioning people on Biktarvy for their HIV treatment to generic drugs, nor which generics will be used.

As set for ADAP, the federal poverty level is an annual income of $15,650 for a single individual; 130% of FPL is $20,345.

Officials said all other current HIV medications including Tivicay will continue to be available. However, in an email sent to healthcare partners, DOH said it “will monitor cost closely and adjust if needed,” suggesting that other meds could also be on the chopping block.

A Jan. 8 email shared with POSITIVELY AWARE, “ADAP Formulary Changes,” sent from a health department email address by Ulyee Choe, DO, director with DOH in Pinellas County and a statewide medical director for county health systems, blamed a budget shortfall for the changes. The state, the email said, required “moving to a financially sustainable model to benefit the largest population of ADAP clients. On the DOH site, the state gives a little more context, attributing the changes to “rising health care insurance premiums nationwide and lack of additional Ryan White Grant funding.” The department said it would “cover costs during a two-month transition period” for impacted clients and framed the shift as necessary to prevent “a shortfall of more than $120 million for Florida.” 

Advocates counter that dropping people from insurance and restricting medications, rather than saving money, will be costly for the state, providers and patients. They also say that giving Floridians less than two months to scramble for alternatives is an unrealistic timeline that risks disruption of treatment. The bottom line: thousands of people with HIV in Florida could lose viral suppression and, in turn, make others vulnerable to getting HIV, advocates say.  

Every U.S. state, Puerto Rico and the District of Columbia operates its own program, with funding from the federal Ryan White HIV/AIDS Program Part B. Although the federal government sets broad standards, each state comes up with its own income eligibility requirements, patient cost sharing (if any) and list of drugs that are covered. Florida’s DOH describes ADAP as providing HIV medications “either directly or by purchase of health insurance that includes coverage for HIV medications.”

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), Florida ADAP serves approximately 32,000 clients—40% are at or below 100% FPL, 10% between 101–138% FPL, and 50% between 138–400% FPL. With a cutoff at 130% FPL, more than 16,000 people risk losing ADAP coverage, NASTAD estimates. 

Reaction to the changes, both in Florida and nationally, was swift and fueled by outrage. In a prepared statement, Kamaria Laffrey, a Florida resident and co-executive director of The SERO Project, wrote, “This is deeply personal for me—not only do I rely on this coverage to stay virally suppressed, but I also need it to manage other health issues as I age with HIV. With no warning and no transparency, this feels like a random and unjustified attack on people simply trying to live.”

Jeremiah Johnson, executive director of PrEP4All and co-founder of the Save HIV Fundingcampaign wrote that the Florida changes, along with other cuts to health insurance assistance nationwide, could cause a “catastrophic return to the darkest days of the AIDS crisis. Those working to undermine HIV funding are not only showing inhuman cruelty toward people living with or vulnerable to HIV, but they are also being fiscally reckless. For every dollar invested in HIV prevention, $3–7 are saved.”

Malcolm Ried, a member of the U.S. People Living with HIV Caucus, released a statement slamming the state for a lack of transparency and “reckless” actions that will lead to “virial rebounds, preventable illness, and new transmissions. In addition, Ried noted that the state has not publicly released an ADAP budget in more than a year. “Before making any cuts, the state owes the public—and the people whose lives depend on ADAP—a full and transparent accounting of how these funds are being used,” Ried wrote. 

AIDS United issued a statement slamming Florida Governor Ron DeSantis for “effectively pushing people out of coverage while acknowledging the same affordability crisis that will make it harder for those individuals to replace insurance or pay for medications out-of-pocket.” Even more alarming: the rollout gives ADAP recipients less than two months’ notice,and it was announced just days before the end of the Affordable Care Act’s open enrollment period, when many people would need immediate support to navigate coverage changes.”

AIDS United said the cuts come in context of broader health system destabilization, including recent Medicaid cuts and disruptions to federal HIV programs. “We are watching prevention infrastructure fray, clinics and community organizations forced to scale back, and the resulting damage ripple across testing, PrEP access, linkage to care, and viral suppression. Florida’s move compounds that harm, at the exact moment when stability is the difference between progress and resurgence.”

The Florida health department did not respond to a request for comment from POSITIVELY AWARE.

For its part, Gilead, the manufacturer of Biktarvy, told POSITIVELY AWARE that it is working to understand the potential impact of the decision on people with HIV in Florida. “Continuity of HIV care is essential to maintaining health and preventing new transmissions and individuals who rely on these lifesaving medicines should be able to stay on therapy without interruption,” wrote a Gilead spokesperson, who also touted the company’s Advancing Access patient assistance program, which could support eligible uninsured Floridians who may be impacted by the change.  

The possibility of real harm to Floridians with HIV

Florida resident Kevin Maloney told POSITIVELY AWARE that he dreads the financial hit coming from the change. “I would have otherwise qualified for the Premium Assistance program here but now have to pay $500 out of pocket with the change from 400% to 130% of FPL.” 

Maloney chose the Florida Blue plan for access to a wide network of doctors due to multiple chronic health conditions including HIV. “I could have gone with a much lower monthly premium, but it would have been an HMO with a limited network of doctors, and authorizations needed by your primary care doctor anytime you needed to see a specialist.”

Although Maloney says he could afford the huge jump, he worries that many others, whose premiums may be even higher, won’t. “I know [AIDS service organizations] are helping, but they are choosing the plans for their clients, and I am afraid they are choosing HMO plans with high co-pays and OOP maximums. I fear costs in these plans are going to be too much for people to absorb.”

Michael Rajner, former consumer representative to the Florida Department of Health’s ADAP Advisory Workgroup and a Floridian living with HIV for nearly three decades, said he’s “blessed” that the state’s changes will have less of an impact on him than on thousands of others. But he said that the current crisis gives him a sense of déjà vu, reminding him of the ADAP waiting lists of the early 2010s, a fallout from the 2008 recession during which thousands of lower-income Floridians waited months to access life-saving medications.  

“Florida didn't lead right away, but very quickly the state began to have the greatest number of people on a wait list for medications,” Rajner said. “And what we’re upset about is that [the state hasn’t] looked at other types of cost containment measures. We feel they’re too extreme and they’re not using rebates properly.”

For the current ADAP crisis, advocates say Florida hasn’t fully explained how clients and healthcare providers are expected to quickly navigate the changes, aside from connecting with community resources and patient assistance programs.

Could the crisis have been prevented?

In a recent session of the Florida Senate Appropriations Committee on Health and Human Services, state Surgeon General Joseph Ladapo, MD, PhD, stated that officials believe only 10,000 Floridians, rather than 30,000 will be kicked off ADAP due to the changes. He also blamed increasing drug costs due to the ending of federal tax credits for the Affordable Care Act for the state shortfall. Although the U.S. House of Representatives advanced a three-year extension of these credits, the measure’s fate in the Senate is unclear. 

Dr. Lapado also said that the state has been in conversations with drug companies about possible assistance but gave no assurances or specifics. 

In a session of the Florida Senate Appropriations Committee, State Senator Carlos Guillermo Smith pressed Leda Kelly, director of policy and budget under Governor DeSantis, on what authority the state had to make “very dramatic cuts” to ADAP “when the state is “required by federal law to spend federal dollars we have received to maintain this program.” Kelly said the underlying grant funding for ADAP had shifted, resulting in a potential $700 million shortfall for the health department. 

“That’s breaking news to me, because I had not heard there had been a federal change,” Smith replied. Following up, Smith asked whether the feds had denied funding that was previously provided to the state, and whether the state had considered other cost containment measures before making the ADAP cuts. Kelly said she would get back to him with those answers. 

No other state has made such changes to its ADAP program this year, however, there are reports that changes being considered in other states.

POSITIVELY AWARE will update this story as new details emerge.