For decades, Tori Samuel, a part-time worker from Ocala, Florida, has managed to keep her HIV under control with medication. She has built a life, marrying her husband and raising three children, all of whom are healthy and free from the virus.
But now, she faces the possibility of losing access to her lifesaving treatment. Florida is planning to impose strict eligibility criteria for free medication, which could leave thousands of residents without necessary care. Samuel, 43, was informed by her caseworker that her family’s monthly income, which is just above $3,800, disqualifies her from assistance for medications that could cost over $5,000 monthly.
Samuel currently receives her medications through the Florida AIDS Drug Assistance Program, a federally funded initiative that has been crucial for many Americans living with HIV who cannot afford costly antiretroviral treatments. Recently, state officials, citing budget concerns, announced they would lower the income threshold for aid and would stop covering certain medications altogether.
With the changes set to take effect on March 1, Samuel is uncertain about how she will manage her medication costs.
“It’s terrifying— and it’s not just me,” she expressed. “Many others are affected by this.”
The National Alliance of State and Territorial AIDS Directors (NASTAD) estimates that approximately 16,000 individuals in Florida could lose access to either medications or health plan premiums. The announcement made on January 8 caught HIV nonprofits, public health advocates, and healthcare providers off guard as they scramble to assist affected patients with finding coverage.
Advocates argue that these changes endanger public health, particularly during a time when many Americans are losing insurance access. New federal laws will limit Medicaid eligibility, while the expiration of COVID-era subsidies is making Affordable Care Act plans unaffordable for some. There are concerns that what’s happening in Florida might encourage similar actions in other states.
“People forget the early days of the epidemic when lack of medication meant death,” said Harold Phillips, who has experience in HIV policy. “Those on medication now must remain on it.”
The Florida health department attributes the changes to escalating healthcare costs and inadequate federal funding. They claim the adjustments will help avoid a projected $120 million shortfall and will focus resources on the maximum number of individuals possible within their budget. However, they did not address how the state has managed the program’s finances.
Florida’s Surgeon General, Joseph A. Ladapo, noted that the rising expenses of the program are partially due to the end of ACA plan subsidies, causing higher premiums nationwide. He cautioned that without intervention, the situation might escalate into a crisis.
The AIDS Healthcare Foundation, which assists thousands of Floridians, has filed a petition challenging the new rules, arguing that the state has unlawfully made these changes. The health department has not responded to inquiries about this petition.
LGBTQ+ groups criticized the cuts to the HIV treatment program, viewing them as another instance of Governor Ron DeSantis’s administration marginalizing the community. Transgender individuals and men who have sex with men are disproportionately affected by HIV, especially in smaller communities.
Florida advocate Michael Rajner believes that previous anti-diversity policies have spurred fears among activists that these program changes were intentional.
When asked about Florida’s situation, the U.S. Health Resources and Services Administration stated it’s doing its best to ensure that states are supported in maximizing resources available for individuals living with HIV.
Florida’s program is supported by the Ryan White federal law, which aids over 500,000 people diagnosed with HIV or AIDS. Federal grants are awarded based on reported cases in the state, which also contributes a fraction of funding.
Thanks to medical advancements, HIV has transformed from a death sentence to a manageable condition, increasing the demand for care and driving up costs related to drug assistance programs.
Back in 2010, Florida had to cut ADAP funding and halted new enrollments due to budget issues, leading to a waitlist that nearly reached 1,500 individuals. Pharmaceutical companies stepped in to support those in need, providing low-cost medications.
The health department considered altering eligibility in the following year but withdrew after pushback from the public, including support from well-known figures like Elton John, who advocates for HIV care and awareness.
Currently, individuals earning up to 400% of the federal poverty line, around $64,000, qualify for drug assistance. However, starting March 1, only those earning up to 130%—approximately $21,000—will be eligible.
Democratic state lawmakers are urging DeSantis to use rainy-day funds to stabilize the program or declare a public health emergency to access emergency funds. One senator expressed confusion about the significant shortfall in a program largely funded by the federal government.
HIV remains a significant issue, especially in the South, where Florida ranks among the highest for new cases.
Other states are also confronting challenges related to treatment costs. Tim Horn from NASTAD noted that although the federal budget for the program hasn’t changed, more states are vying for limited supplemental and emergency grants. Some states have implemented more moderate cuts, but Florida’s changes are unprecedented in severity.
The cuts to the drug assistance program not only jeopardize medication access but also risk patients losing health coverage. For instance, Shawn Tinsley, a 53-year-old activist, depends on the program for her costly ACA plan and medications. With her health issues preventing her from working, she’s worried about losing adequate care.
Community health clinics funded by the Ryan White law may not be able to handle the increased patient load, as more individuals may have to stop taking their medications, which could lead to unintended transmission risks.
Interruptions in treatment pose significant dangers since HIV can mutate and become drug-resistant. Paul Arons, a former director at the Florida health department, highlighted that this is contrary to public health goals.
Starting March 1, Florida will no longer cover Biktarvy, a popular medication that combines three antiretroviral drugs, nor will it cover Descovy for patients with non-failing kidneys. Gilead Sciences, the manufacturer of these drugs, has stated it will maintain its prices for state programs through 2026 while already offering substantial discounts.
Patients statewide are urgently collaborating with healthcare providers to secure Biktarvy. Some individuals have even started sharing their extra medications, according to an activist in Miami.
One 44-year-old cleaning professional named Bobbie was shocked after receiving a letter about her potential ineligibility. She had previously received assistance in Iowa and California. Now, she’s uncertain if her husband’s insurance will cover her medication.
“I’m really struggling mentally with this,” Bobbie shared, expressing her concerns.
