Thousands of Americans with HIV at Risk of Losing Access to Lifesaving Care

This moment demands new urgency and new solutions.

The AIDS Drug Assistance Program (ADAP), the nation’s primary safety net for HIV medications, is facing its most significant fiscal crisis in decades. Though major advances in treatment and prevention have largely moved HIV out of the national headlines, the infrastructure that provides lifesaving drugs to roughly a quarter of the 1.2 million people with HIV in the United States is fracturing. NASTAD, a non-partisan non-profit association of public health officials who administer HIV and hepatitis programs in the United States, reports that 10 states are currently running deficits in their ADAPs for the fiscal year ending this month, with 19 more forecasting deficits for the next year. Unless urgent action is taken to shore up these programs, thousands of people with HIV are at immediate risk of losing access to the antiretroviral therapies that keep them alive and prevent new transmissions.

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This looming crisis threatens a decades-long national commitment. In 1987, two-thirds of Americans ranked HIV as the leading health threat facing the nation. Today, the HIV crisis has fallen so far from the headlines that many people believe that this is a problem solved. Nearly 32,000 new infections occurred in 2022, well below the more than 130,000 cases per year in the mid-1980s, but they add to the number of people in need of stable access to antiretroviral therapies and quality care. The nation prioritizes access to treatment because we want people with HIV to lead high-quality lives. Additionally, research has proved that when people stay on antiretroviral therapies and are durably virally suppressed, they cannot transmit HIV. This is known as U=U or undetectable equals untransmittable. Maintaining this commitment is a moral imperative and fiscal necessity; with the average lifetime treatment cost for a person with HIV estimated at over $1 million, stable care averts massive future spending.

The Ryan White HIV/AIDS Program, of which ADAP is the largest component, was enacted in 1990 as a safety net for the uninsured and underinsured. It works alongside public and private insurance to create a nationwide system of HIV care. Historically, unless they had advanced HIV (i.e. AIDS) or had employer coverage, most people with HIV were uninsured. The Affordable Care Act fundamentally changed this by expanding Medicaid (adopted by 40 states plus D.C.) and created new subsidized marketplace coverage options, leading to insurance rates for people with HIV that now match the general population. Even with coverage, however, the Ryan White Program remains essential for filling gaps and ensuring affordability. The program’s success is undeniable: In 2024, 91.4% of persons receiving Ryan White Program services achieved viral suppression compared with 67% of all people with diagnosed HIV in the United States in 2023.

Yet, this success hides growing financial pressure. The Ryan White Program has not seen significant federal funding increases in years and ADAP has been flat-funded for 12 years. Now, states are facing several financing pressures: rising drug costs; work requirements, and more stringent eligibility verification processes in the One Big, Beautiful Bill Act could cause people with HIV to lose Medicaid and turn to ADAP for support; the loss of the Enhanced Premium Tax Credits is shifting more of the burden of providing HIV care from insurance onto ADAPs, at the same time that purchasing insurance coverage through ADAP may become less viable with rising marketplace premiums. Further, there is less supplemental federal funding for ADAPs. Additionally, costs shifting to states from the Trump tax bill in other areas, such as the Supplemental Nutrition Assistance Program, further limits states’ capacity to increase general funds for ADAP.

Florida is in the news for enacting large and harmful cuts to its ADAP program, but this crisis extends beyond one state and demands a broader national response. The state is limiting income eligibility for assistance with HIV medications to persons with income less than $21,000 per year, removing coverage for the single-tablet HIV treatment that accounts for more than half of dispensed antiretroviral therapies in the United States and is one of only two recommended in federal guidelines as an initial treatment, and eliminating premium subsidies that enabled many people with HIV to enroll in marketplace insurance coverage. Further, the state has seemingly rebuffed efforts to work with legislators, providers, and community stakeholders to seek alternative ways to stabilize the program.

This moment demands new urgency and new solutions. In his first administration, President Donald Trump launched the Ending the HIV Epidemic Initiative (EHE) that set a goal of eliminating HIV as a public health threat by 2030 by targeting jurisdictions with a high disease burden and led Congress to appropriate increased funding. The president should announce EHE 2.0 to further his legacy, potentially using transfer authority to redirect resources from outside of the Ryan White Program to address this critical emergency. The Health Resources and Services Administration should engage in directed oversight of Ryan White Program grants to states to ensure good health outcomes for federal investments and to provide technical assistance to states to minimize any losses in access to antiretroviral therapies and other services. Congress should consider an emergency supplemental funding package to shore up ADAP programs and HIV services through the next few years. States should exempt people with HIV from Medicaid work requirements and prioritize state general revenues for ADAP to protect access to HIV treatment.

The legacy of the HIV movement has been people with HIV, their healthcare providers, and their communities demanding action. As we are seeing now in Florida, we need the public writ large to demand action and funding to maintain access to lifesaving HIV treatment throughout the United States.

Jeffrey S. Crowley is the director of the O’Neill Institute Center for HIV & Infectious Disease Policy at Georgetown Law. From 2009 to 2011, he served as the director of the White House Office of National AIDS Policy and senior adviser on disability policy.

Disclosures: The Center for HIV & Infectious Disease Policy receives support from Gilead Sciences, Merck, and ViiV Healthcare. This essay was developed independently of and without involvement of any funders.

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