Nearly 20 States Restrict H.I.V. Assistance Programs, Threatening Access to Treatment
About 20 states are restricting access to assistance programs that help people pay for H.I.V. treatment, a shift that could leave tens of thousands of Americans without reliable access to lifesaving medications. Several additional states are considering similar changes, according to an analysis released Monday by the health research group KFF.
The tightening rules affect the Ryan White AIDS Drug Assistance Programs, known as ADAPs, which help cover the cost of H.I.V. medications, provide drugs at no charge to some patients, and pay insurance premiums for others. Roughly a quarter of the 1.2 million people living with H.I.V. in the United States rely on these programs.
H.I.V. medications can suppress the virus to undetectable levels, preventing transmission to others. Interruptions in treatment, however, may increase the number of new infections and lead to more cases of AIDS.
Some patients facing shortages may try to stretch their prescriptions by skipping doses or sharing pills, a practice that can allow the virus to replicate and develop resistance to medication. Drug-resistant strains can then spread to others.
The H.I.V. Medicine Association released a statement warning the cuts “will threaten the lives of people with HIV and will lead to spikes in new HIV diagnoses and a rise in health care costs as people with HIV develop serious infections requiring hospitalization.”
“H.I.V. treatment disruptions of this magnitude will result in a public health disaster. Florida must follow due process and work with health care professionals, people with H.I.V. and the state legislature to address any funding challenges.”
The changes are being driven largely by financial pressure. ADAPs are funded through the federal Ryan White H.I.V. program, but the amount of federal support has remained largely unchanged for more than a decade, even as drug prices and insurance premiums have risen. Enrollment has also increased, with participation climbing about 30 percent from 2022 to 2024 after states began removing people from Medicaid rolls that had been expanded during the pandemic.
“Effectively, programs are being asked to do more with less federal funding,” said Lindsey Dawson, associate director of H.I.V. policy at KFF.
So far, 18 states have adopted at least one cost-cutting measure, including lowering income eligibility limits or reducing the number of covered medications. Five more states are weighing changes that could take effect as early as next month. Experts say additional states may follow, especially as new work requirements push some people off Medicaid and into ADAP programs.
“We’re expecting to see more states anticipating or contending with budget deficits, and we do anticipate a growing number of states having to implement cost-containment measures,” said Tim Horn, director of medication access at the National Alliance of State and Territorial AIDS Directors.
The alliance began tracking state policy changes last fall, when Pennsylvania reduced its income eligibility threshold from 500 percent of the federal poverty level to 350 percent.
Florida has enacted the most sweeping rollback so far. On Sunday, the state ended benefits for at least 16,000 residents living with H.I.V. and stopped covering Biktarvy, the most commonly prescribed H.I.V. medication. The move is part of a broader overhaul of the state’s ADAP program, the largest in the country, which serves more than 32,000 people.
Earlier this year, Florida officials notified participants that the income limit for eligibility would drop from 400 percent of the federal poverty level to 130 percent — about $20,748 a year for an individual, down from $63,840.
The consequences, advocates say, could extend far beyond those directly affected.
“This is really an economic disaster, a public health disaster, a moral disaster,” said Esteban Wood, director of advocacy and legislative affairs at the AIDS Healthcare Foundation, which has filed for an injunction to stop the changes.
“We’re seeing patients across the state full of anxiety and fear rationing their lifesaving medication. These are people who have no other safety net. ADAP is the safety net.”
State health officials have said the changes are necessary to address a projected $120 million budget shortfall. However, the department has not released detailed figures and did not respond to requests for comment.
On Friday, the Centers for Medicare & Medicaid Services opened a special enrollment period for Floridians losing help with insurance premiums, allowing them to choose new plans through April 30.
Advocacy groups attempted to block the restrictions, arguing that the state had not followed proper procedures in changing the rules. On Tuesday, Florida filed an emergency regulation allowing the limits to take effect.
Moumita Basuroychowdhury is a Contributing Reporter at The National Digest. After earning an economics degree at Cornell University, she moved to NYC to pursue her MFA in creative writing. She enjoys reporting on science, business and culture news. You can reach her at moumita.b@thenationaldigest.com.
