Flat funding, rising costs and increasing need are among the forces straining the ecosystem of care that people living with HIV across the U.S. depend on
.FIRST PERSON. COMMENTARY
Florida’s HIV community was jolted earlier this year when the state’s health department gave short notice that new restrictions to the state’s AIDS Drug Assistance Program (ADAP) would take effect on March 1. While the Florida legislature restored many of those cuts in a new state budget bill, it may only be brief reprieve as the state’s new fiscal year began July 1.
What’s happening in Florida isn’t isolated. In fairly quick succession, HIV advocates across the United States are seeing similar changes to ADAPs in other states. Tightened income eligibility requirements, reduced formularies, cuts to ACA marketplace premium subsidies. They reveal just how fragile and interconnected HIV care really is.
Your health isn’t just about medicine and labs. It also relies on whether you have stable housing, a source of income, access to food and the ability to navigate a complicated health care system. Without those things, even someone who wants to prioritize their health can be left asking “how?” This is where systems come in—and where they often fall short.
PLWH have experienced discrimination in housing, which prompted the creation of HOPWA (Housing Opportunities for Persons with AIDS) in the early 1990s.
PLWH have experienced discrimination in employment, which led several states to adopt non-disclosure laws, protecting a person’s HIV status.
Before the Affordable Care Act, when PLWH tried to get health insurance, premiums were often sky-high because HIV was considered a pre-existing condition.
These policies didn’t appear out of nowhere; they were responses to harm—harm driven by stigma.
Stigma leads to discrimination, and discrimination discourages people from accessing the very things they need to stay healthy. Stigma was—and is—the one of the greatest barriers to care.
When there are gaps in the systems intended to service us, they get exploited and people fall through them. This is when government intervention becomes necessary.
When systemic and socioeconomic forces prevent people from accessing care and services, we have to look at what else is going on. If someone is experiencing food insecurity, living on the streets or goes uninsured—not by choice, but because of systemic discrimination—then policy must respond. And policy responds through the allocation of resources.
The Comprehensive AIDS Resources Emergency Act was passed.
Ryan White, a 13-year-old Indiana boy, made national headlines in 1984 when he was banned from attending school after he tested HIV positive. His family successfully sued for Ryan’s right to return to class. He testified before a congressional committee in support of the first federally funded HIV services program. After Ryan died in April 1990, the bill was named after him and became law later that year. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act remains the most extensive federal response to the HIV/AIDS crisis.
Since then, the Ryan White program, as it is often called, has served about 600,000 people each year. It directs resources to the most vulnerable people living with HIV and fills gaps in care that traditional insurance systems do not cover. But many people don’t realize just how vulnerable this program is.
The Ryan White program relies on appropriations passed by Congress. Every year, funding levels are decided through the federal budget process. And for many jurisdictions, that funding has remained relatively flat for years.
Meanwhile, the cost of healthcare continues to rise.
Flat funding plus rising costs doesn’t maintain a system—it strains it. Services get stretched thinner. Programs are forced to make decisions about what they can sustain—and what must be reduced or cut altogether. And over time, that strain compounds. That’s how systems reach a breaking point.
One of the ways states, counties and cities have historically relieved some of that pressure is through ADAP. ADAP helps cover the cost of HIV medications for people who might not otherwise be able to afford them. Beyond that, it has also served as a critical funding mechanism. In simple terms, here’s how it works:
When a state program helps to pay for medications, drug manufacturers provide rebates—a portion of the cost gets returned to the state. Over time, those rebates became a major source of flexible funding. Jurisdictions used them to support services that go beyond medication: case management, housing support, transportation, oral healthcare and more. In many places, entire programs were built on those rebate dollars.
Policy changes at the federal level have disrupted that system. Changes to Medicare have limited the ability to capture those rebates. At the same time, Medicaid changes increased ADAP program expenditures. The result? The pool of funding that many programs have relied on is starting to shrink —and quickly.
This didn’t happen on its own. HIV prevention funding at the Centers for Disease Controle and Prevention (CDC) has shifted and states now receive less support. At the same time, Republicans in Congress have proposed eliminating funding for the Ending the HIV Epidemic (EHE) initiative entirely. Individually, each of these changes is concerning. Together, they destabilize the entire HIV care ecosystem.
These funding streams were never meant to operate in silos; they were interwoven to create a comprehensive system of HIV care and prevention. Pull one thread, and the entire fabric of services begins to unravel.
Advocates have been sounding the alarm for years. We’ve raised concerns to federal leaders, state governments and health departments. We prepared our clients and told our teams to brace for impact. And now we’re here.
Those of us working in direct services are pivoting daily—responding to rule changes, funding reductions and increasing demands. Our clients are doing the same. And for many long-term survivors, this moment feels familiar in ways that are deeply unsettling.
For people impacted by these changes, the anxiety is real; the impact is real. These cutbacks may determine whether someone has a case manager, a ride to their medical appointment—or access the medication that keeps them alive.
Funding decisions are not some abstract concept—they signal priorities. When these services are not prioritized, we send a message about whose health matters. More than 45 years after the CDC first reported deaths from AIDS, HIV is still an urgent issue. The people most affected by it deserve more than a system unraveling under uncertainty.
But changing the story requires understanding how we got here. It requires more people paying attention to how funding works, how decisions are made—in Congress and in health departments—and how those decisions ultimately effect people’s lives. These aren’t policy choices—they are choices about people.
It will take all of us advocating, paying attention and holding decision-makers accountable to make sure those choices receive the care and urgency our communities deserve.