In recent months, HIV policy shifts have been quietly unfolding across the United States, and advocates warn the consequences could be devastating.
As of March 2026, at least 18 states have already reduced or restricted access to AIDS Drug Assistance Programs (ADAP), with five more states considering similar changes, according to public health advocates and data from the National Alliance of State and Territorial AIDS Directors (NASTAD).
The programs, funded through the federal Ryan White HIV/AIDS Program, help people living with HIV afford life-saving medications that can cost tens of thousands of dollars each year. For roughly 300,000 Americans living with HIV (about a quarter of the nation’s HIV-positive population), ADAP programs are often the last line of defense for treatment access.
David J. Johns, Ph.D., the CEO and executive director of the National Black Justice Collective (NBJC), says the changes could interrupt treatment for thousands of people across the country.
“There are 18 states that have already adopted what they’re calling cost-cutting changes to their HIV drug assistance programs,” Johns tells ESSENCE. “And there are five more states that we know of that are considering similar steps.”
Among the states implementing restrictions are Florida, Pennsylvania, Kansas, Delaware, Rhode Island, Arizona, Michigan, Nevada, Alaska and Oklahoma, with additional states exploring similar policy shifts.
“These changes are essentially making it harder for people to qualify for assistance to afford drugs that have increased significantly in cost,” Johns says.
One of the biggest concerns resulting from these policy changes is the soaring cost of HIV medications.
Biktarvy, currently the most widely prescribed HIV medication in the United States, now costs about $61,000 per year at wholesale, according to Johns.
“And I know a whole lot of Black folks—and non-Black folks—who don’t make $60,000 a year,” he says.
At the same time, enrollment in ADAP programs has surged roughly 30 percent in recent years, according to advocates, partly because many Americans lost Medicaid coverage when pandemic-era protections expired.
The expiration of enhanced Affordable Care Act tax credits at the end of 2025 also drove insurance costs higher. Average ACA premiums rose roughly 26 percent between 2025 and 2026, leaving more people unable to afford coverage.
Meanwhile, federal funding for the Ryan White program has remained largely flat for more than a decade, even as medication and care costs have climbed.
“The federal government has been investing in the same level of funding while the cost for drugs and care have increased,” Johns says. “This is a policy decision that elected leaders are making. And Black communities disproportionately are paying for it with our lives.”
Advocates say the ripple effects of these cuts will fall hardest on communities already disproportionately impacted by HIV.
Black Americans represent more than 40 percent of new HIV diagnoses despite making up just 13 percent of the U.S. population.
The disparities are particularly stark for Black women and Black transgender women.
“Black women account for more than 50 percent of all new diagnoses,” Johns shares. “Black trans women account for 46 percent of new HIV diagnoses.”
Geography also plays a major role. Many of the states implementing restrictions are in the South, where HIV rates remain among the highest in the country and where most Black Americans live.
“In the South in particular, Black women’s HIV rates are 14% higher than white women’s,” he says.
Black same-gender-loving men also remain among the groups most affected by the epidemic. According to national data, 35 percent of all new HIV diagnoses occur among Black same-gender-loving men.
Despite these risks, Black Americans remain underrepresented among people using preventive medications such as PrEP, which can dramatically reduce the chance of HIV transmission.
For people living with HIV, consistent medication is essential to keeping the virus suppressed and preventing transmission.
Interruptions in treatment can have immediate and long-term consequences.
“Missing doses means the virus can come back,” Johns says. “If someone has been undetectable, it can become resistant to medication. What has been working for you might not work at all in the future.”
Drug resistance can limit future treatment options and increase the likelihood that the virus spreads.
“This is life and death,” Johns says. “This is not red tape. It’s not about bureaucracy or any of the other things that people might hear from people in positions of power, especially those who are hoarding that privilege.”
The cuts also contradict national ambitions to end the HIV epidemic, once voiced by President Trump himself in his 2019 State of the Union Address.
“The sitting president himself set a goal in 2019 to end the HIV epidemic by 2030,” he says. “What we know is that all of these cuts are moving us in the opposite direction.”
Beyond the human toll, the economic consequences could also be significant. Interruptions in preventive care often lead to higher emergency healthcare costs, increased hospitalizations, and greater strain on public health systems.
“People are going to be paying more,” Johns says. “And we are all going to be paying more in terms of the cost of lives lost.”
What ESSENCE Readers Can Do
Advocates say there are several steps individuals can take right now to protect themselves and support efforts to end the epidemic.
1. Know your status.
Organizations such as the National Black Justice Collective offer resources, including free at-home HIV testing kits.
2. If you lose coverage, don’t stop treatment.
Stopping HIV medication abruptly can cause the virus to rebound and become resistant. Always consult a healthcare provider first.
3. Contact your local AIDS service organization.
Local organizations can connect people with emergency medication assistance programs, patient support, and Ryan White providers.
4. Pressure policymakers.
Advocates say Congress must increase Ryan White program funding to reflect the rising cost of care.
“This is fixable,” Johns says. “But it requires political will. And political will requires constituent pressure.”
5. Support organizations working in the community.
Groups such as the Black AIDS Institute, the National Black Justice Collective, and TruEvolution are working to expand resources and fight stigma in Black communities.
Johns also encourages readers to stay informed and engaged with ongoing policy conversations.
“The math doesn’t math,” he says. “In a country that has the resources to end the HIV epidemic, choosing not to fund treatment is a political decision.”
