Cracks are beginning to show in the finances that are at the heart of the country’s efforts to combat the HIV epidemic.
The Ryan White AIDS Drug Assistance Program has helped more than 250,000 Americans living with HIV obtain lifesaving medications, health insurance, or both. But funding pressures are forcing 18 states to cut costs, putting the care of thousands of Americans living with HIV at risk, according to an analysis by the health policy nonprofit KFF.
Five other states are considering changes to expand limited funding for the Ryan White Assistance Program, known as ADAP, according to KFF.
These states have enacted or are considering changes, and some experts worry more states will follow suit. Program cuts would not only harm some of the 1.2 million Americans living with HIV, but without drugs to suppress the virus, people could become sicker and spread the virus to others.
“We’re concerned about all states,” said Tim Horn, director of drug access for the National Association of State and Territorial AIDS Directors. “Sometimes it seems like budget deficits appear out of thin air.”
What is the Ryan White ADAP Program?
The federally funded Ryan White HIV/AIDS Program provides funding to state-based ADAPs to pay for medication and insurance for people living with HIV. ADAP also received other sources of income, such as state funds and pharmaceutical rebates.
The National Alliance of State and Territorial AIDS Directors and KFF said several factors are putting pressure on state-based ADAP programs.
Rising costs of HIV drugs and health insurance are straining national programs. These programs have also seen a surge in people seeking assistance. Meanwhile, Congressional funding for Ryan White’s program has remained flat in recent years.
In 2024, these state programs will serve more than 257,000 people, a 30% increase from 2022, according to statistics from the National Association of State and Territorial AIDS Directors.
This program primarily targets low-income groups. Almost one in four people living with HIV receives services from the ADAP program.
Horn said the surge in enrollment came as the federal government resumed Medicaid eligibility screening, which had been suspended during the coronavirus pandemic. HIV patients who no longer qualify for Medicaid now rely on their state’s ADAP to pay for their medications, insurance premiums, or both.
Other federal health policy changes placed additional pressure on ADAP. Congress did not extend the Affordable Care Act’s enhanced subsidies that lower consumers’ spending on insurance plans. ACA plans are more expensive this year, with the expiration of enhanced tax credits causing average insurance costs for consumers to jump 114%, according to a KFF analysis.
More pressure is coming. President Donald Trump’s tax cuts and spending bill is expected to cut federal spending on Medicaid by more than $900 billion over the next 10 years. The nonpartisan Congressional Budget Office estimates that the law could leave millions of Americans uninsured over that period.
These states are tightening qualifications
Florida enacted changes expected to cut aid to an estimated 10,000 to 16,000 residents. Florida has significantly lowered the income limits for the program.
Florida previously expanded eligibility to people earning up to 400% of the federal poverty level, or $63,840 a year. Currently, Florida is reducing residents who earn more than 130% of the federal poverty level, or $20,748 per year.
Florida’s program also excludes Bictarvy, the most widely prescribed HIV drug. A one-month supply of the drug for the uninsured costs an average of $5,132, according to GoodRx.
The Florida Department of Health said changes to the program were needed to prevent a budget gap of more than $120 million.
Florida’s changes are “probably the most severe, but other states have also reduced income eligibility,” said Jennifer Kates, KFF’s senior vice president and director of the Global Public Health Policy Program.
ADAP programs in Pennsylvania, Kansas, Delaware and Rhode Island have changed income eligibility limits, according to the National Bureau of State and Territorial AIDS Directors. Changes enacted by other states include reducing funding for health care services, conducting biannual eligibility tests, and implementing annual or monthly spending caps per enrollee.
No state imposes a waiting list. This is a tactic commonly used in the early 2000s, when too many people with too little money turned to ADAP for help. The administrations of Presidents George W. Bush and Barack Obama had to approve emergency funding to reduce waiting lists, Cates said.
Thuff KFF said no national program has placed people on a waiting list in the past 10 years. (erase However) states have sometimes used other cost-cutting strategies.
Cates said Florida’s changes represent a “new level of restrictions that we haven’t seen in a while.”
Why advocates are concerned about cuts to HIV services
Experts say cuts to HIV drugs and other aid could put more Americans at risk for the disease.
More than 39,000 U.S. residents will have been diagnosed with HIV as of 2023, although the number of cases remains well below the levels reached in the 1990s, according to statistics from the Centers for Disease Control and Prevention. According to the CDC, nearly 4,500 deaths in 2023 will be caused by HIV, the virus that weakens the immune system and causes AIDS.
People with HIV who take antiretroviral drugs usually stay healthy, Cates said, and boosting their viral load to undetectable levels can also protect their sexual partners from infection.
But that could change if people no longer have access to HIV drugs.
“If a person’s viral load increases because they don’t have their medication or their access to it is unstable, they could be transmitting HIV to their partner,” Cates said.
Researchers at the University of California, San Diego estimated the potential impact of Florida’s ADAP cuts on people living in Miami-Dade County. Approximately one in three new HIV infections in the county are diagnosed in Florida.
UCSD researchers estimate that of the 7,400 Miami-Dade residents currently receiving ADAP services, 3,700 would no longer qualify under Florida’s enhanced restrictions.
Natasha Martin, a UCSD professor and associate director of global public health, said this lack of coverage could result in 1,000 new HIV cases in Miami-Dade County over the next five years.
The lifetime cost of treating a person with HIV is just over $1 million, so researchers estimate that ADAP eligibility cuts could cost an additional $1 billion to treat an additional 1,000 Miami-Dade County residents with HIV.
“It doesn’t make economic sense,” Martin said. “As a result of these changes, we will be paying billions of dollars to care for people newly infected with HIV.”
