Changes are coming for those who rely on Florida’s AIDS Drug Assistance Program, or ADAP, an evolving situation which advocates warn could be devastating for thousands of HIV/AIDS patients statewide.
Participants in the program, which provides valuable access to medication for people living with HIV and AIDS in Florida, received letters from the Florida Department of Health late last month announcing that benefits of the program will no longer be available to them after March 1. It’s part of a sweeping cut to the program’s funding that officials say is necessary to make up for a $120 million shortfall in the state’s budget.
The result? Thousands of Floridians who rely on the program to remain healthy must find alternative ways to afford their HIV/AIDS medication, alter their medication or choose to go without it.
“This will be devastating for my constituents and for 30,000 Floridians statewide who depend on the ADAP program,” state Sen. Carlos Guillermo Smith says. “We estimate that 16,000 Floridians can lose coverage completely as a result of this sudden and dramatic policy change and it’s a life and death situation for them.”
New guidelines will reduce the income eligibility for those who can access the program. Previously, those making up to 400% of the federal poverty level ($62,600) per year could rely on ADAP to assist in covering the costs of HIV/AIDS medications. The new cap makes assistance available only to those making up to 130% of the poverty level, or just over $20,300 per year.
It’s a drastic change that can mean life or death for many who rely on HIV medications and have difficulties paying for them, according to Michael Rajner, a former consumer representative with the Florida Department of Health’s ADAP Advisory workgroup.
Rajner said that the news of cuts to ADAP is not only disturbing, but the way in which those changes are being communicated makes things even more unclear for those who must react quickly.
“The Department of Health’s website is so confusing and it’s unclear where you may fall with so many guidelines floating around,” Rajner explains. “What people are hearing verbally is different than what’s been written down and there are no assurances of what changes are to come.”
A lack of transparency is among the many issues advocates have with the sudden announcement from the Department of Health. For Sheryl Hoolsema, director of case management for Empath Partners for Care in Tampa Bay, frustrations run deep with case managers and clients.
“That frustration really comes from the lack of transparency from the state,” Hoolsema notes. “There have been no public hearings, no town halls and no focus groups. Where is the feedback and where did they come up with the 130%? It just seems random that they came up with this number and there is this wide gap of people who now have nowhere to go for medication assistance.”
If medication is hard to find or afford, then those who require it may skip doses or fail to take it all together. That would have a drastic impact on Florida’s already high HIV transmission cases, according to George Wallace, executive director of The Center Orlando.
“It’s very scary,” he says. “We’ve come so far with science, technology and medication. Today people take medications to remain undetectable which makes it virtually impossible to transmit HIV. Without access to that medication, not only will the health of those who require the medication decline, but the HIV transmission rates in Florida will climb.”
Studies vary, but Florida consistently ranks among the top three states in the country with the most HIV diagnoses each year. Miami-Dade County and Central Florida are among the most elevated areas in the state reporting new diagnoses.
Rajner calls ADAP a lifeline and a gamechanger for the HIV epidemic. Without it, popular and effective medications will be out of reach for so many who have come to rely on them.
Among Florida’s proposed ADAP changes are the medications that will be made available to participants. Most concerning for many is the state’s plan to eliminate access to the medication Biktarvy.
Biktarvy is a once-a-day prescription medicine that combines three antiretroviral drugs into one pill. It is the most-prescribed treatment for HIV and is praised for its effectiveness in lowering transmission rates and making an “undetectable” status possible. Without assistance, the medication can cost upwards of $4,000 per month.
Descovy, a popular anti-viral medication used to both treat and prevent HIV, would be limited to only those on the program with renal insufficiency. That means many who rely on the drug as part of their HIV maintenance regimen would have to pay for it directly or find an alternative, regardless of where they fall on the federal poverty metric. Estimated costs for Descovy without insurance hover near $2,000 per month.
Advances in medicine have made the treatment regimen for HIV more manageable in recent years. Decades ago, multiple pills with numerous side effects were required to treat HIV. Today, fewer pills mean it’s more sustainable to manage HIV in the long term. Forcing a change in that treatment would be detrimental to the health of thousands of Floridians, says Rajner.
Drugs like AZT and DDI that were prescribed in the early days of the AIDS crisis had terrible side effects. More effective medications that were easier to take followed the discovery of protease inhibitors, which paved the way for today’s combination therapy.
“Reducing the pill count to make it easier for someone to take those medications on a regular basis as prescribed to suppress viral load is critical,” Rajner says. “It is so critical that we don’t turn the clock back on HIV treatment, and that’s essentially what the health department is prescribing. That equates to medical malpractice coming from our surgeon general.”
If the changes to ADAP take effect as planned, Floridians from around the state will have to make difficult decisions.
“The reality is that many individuals will stop taking their HIV medications,” Smith says. “That means more health consequences for them and more transmissions as well. In a state that is number one for new HIV transmissions, it’s important to have medications available to keep people healthy and undetectable that lowers the risk of transmitting HIV to another person. Having a robust ADAP program that supports people living with HIV actually helps us all.”
The potential crisis that could befall the state has not gone unnoticed in Tallahassee. According to the Tampa Bay Times, Florida Surgeon General Joseph Ladapo warned lawmakers that cuts to ADAP are “a really, really serious issue.”
Rajner is hopeful that public outcry and advocacy will adjust, delay or even prevent the proposed changes to the state’s ADAP from becoming permanent. Rajner says he has testified in two different committees in Tallahassee to explain how these changes will impact the state’s residents. Senators and representatives from both parties, he notes, seem to be paying attention.
“I have a sense of hope that the awareness we have brought about has elevated the issue and the legislators are alarmed,” Rajner advises. He adds that some legislators even requested private conversations with him regarding his concerns.
Smith also sees steps in the right direction but encourages Floridians to write and call their Florida elected officials to keep the ADAP program top of mind.
“We’ve seen some bipartisan pushback to these sudden changes and Republican [District 2 Senator] Jay Trumbull has directed the state surgeon general to talk to advocates and to hear concerns because the proposed changes will be devastating for Floridians,” he explains. “The state has given people who depend on ADAP virtually no time to make important decisions on how they are going to get medications.”
In mid-January, as letters from the Department of Health landed in mailboxes across the state informing those who rely on ADAP that their access would be limited or revoked, open enrollment to the Affordable Care Act was ending. That meant most who could now be denied the assistance they’ve relied on for years had no notice and no recourse to find an alternative path to continue accessing their medications.
The cuts to the HIV program are cruel, but the timing of the notices is even more cruel, according to Hoolsema.
“This is just cruelty,” she says. “If we had time to do some of these changes, it would make a little more sense. We need time to try to figure out these things without having to make rash decisions. When you have to rush decisions … other things get left in the crosshairs.”
Rajner shares Hoolsema’s frustration, adding that Floridians have little or no recourse with the pending decisions from Tallahassee. Open enrollment for the Affordable Care Act closed on Jan. 15.
“People are stuck,” he says. “January 15 has come and gone but March 1 is still ahead of us. People who were selecting plans in the ACA were screwed because these changes came out days before the closing of open enrollment. They went with the plan the Department of Health told them to go with.”
Rajner says he and other advocates are calling on Gov. Ron DeSantis to declare a state of emergency and use emergency funds to float the $120 million shortfall. It’s the least the governor could do, Rajner adds.
“This is the dismantling of a safety net program that has proven results, and without it we’re falling off a cliff,” Rajner stresses. “This is not the state legislature doing this. This is coming from the DeSantis administration and it’s the administration that needs to do the turnaround. We need our legislators to make that message clear.”
Smith says that Floridians should not be punished for a budget shortfall, especially when funding for programs like ADAP should never simply disappear.
“For decades Florida has depended on federal dollars to fund the ADAP program,” Smith says. “Those dollars are intended only for ADAP and cannot be spent on anything other than ADAP. So many of us are very confused about where the funding for this program suddenly disappeared to. The state says there’s a $120 million shortfall … There are a lot of questions that remain unanswered.”
As news spread of Florida’s decision to limit ADAP funding, HIV/AIDS organizations voiced their concerns nationwide. AIDS United, a non-profit organization committed to end the HIV epidemic in the United States, condemned the cuts, and the DeSantis administration specifically.
“AIDS United strongly condemns the Florida Department of Health’s decision, under Governor Ron DeSantis’ administration, to decimate Florida’s AIDS Drug Assistance Program,” the organization said in a release. “These actions will rip lifesaving medications away from Floridians living with HIV, increase new HIV transmissions and drive up long-term health care costs across the state.”
The International Association of Providers of AIDS Care estimates that approximately half of all Floridians who rely on ADAP for uninterrupted access to HIV treatment are at immediate risk of having their medications disrupted. The organization condemned the two-month transition window that allows for people to secure coverage from other organizations.
This is “an unrealistic timeline in a fragmented insurance market,” the IAPAC statement reads. “Treatment disruption for a person living with HIV is not an administrative inconvenience; it is a clinical risk.”
Jeremiah Johnson, executive director of PrEP4Aall and a co-founder of the Save HIV Funding campaign, urged the public to remain visible in the ADAP crisis to prevent “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,’ Johnson said in a statement. “For every dollar invested in HIV prevention, three to seven dollars are saved.”
Florida resident and co-executive director of The SERO Project Kamaria Laffrey calls the threat to ADAP funding “deeply personal.”
“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,” Laffrey wrote. “With no warning and no transparency, this feels like a random and unjustified attack on people simply trying to live.”
As March 1 quickly approaches, advocates, case managers and elected officials are raising the alarm in hopes that the funding crisis can be addressed and ADAP can remain untouched. Other states are watching, Rajner says, and what happens in Florida could have an impact on the HIV community across the country.
“Several other states are looking at how Florida does this and will be using it as a model,” Rajner notes. “It’s time to wake up, speak up and take action. We all need to resist and demand to be a part of this.”
Rajner adds that during a meeting with the state surgeon general’s staff, the 1983 Denver Principles were referenced. Those principles launched the self-empowerment movement for people living with HIV and highlight the importance of people living with HIV being directly involved with decisions involving their access to treatment.
But both advocates and allies must make their voices heard as well, Rajner continues. Rallies at the state capitol have brought those directly impacted by the funding decision to the front of the conversation in hopes that legislators will address the choice to sacrifice ADAP for budget shortfalls.
And even after the rallies, the conversation must continue, Smith adds.
“It’s important that everyone reach out to our state senators and state representatives and demand answers from the state of Florida,” he notes. “This is a policy decision that if unchanged, will cost lives. People need access to these medications to live and cutting them off from reimbursement under this program is going to lead to devastation.”
For more information about Florida’s ADAP program, visit FloridaHealth.gov.
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