We cannot go back on Medicaid coverage for people living with HIV

As an infectious diseases physician who provides HIV care in Kentucky, I often see the serious health consequences of patients going without health insurance.

Not long ago, a young adult man was transferred to my hospital after eight months of rapidly declining health, including neurologic issues, significant weight loss, high fever, shortness of breath and confusion. Uninsured, and after months of fragmented and inconsistent care, he was diagnosed at our hospital with advanced HIV.

More than 1.2 million people are living with HIV in the U.S. Around 38,000 are newly diagnosed every year, and 22 percent of them, like my patient, are diagnosed late in the course of the disease after their immune system has been severely impaired .

Uninterrupted access to HIV treatment suppresses the virus to undetectable levels, protecting the immune system and stopping HIV transmission . Virally suppressed patients can stay healthy and do not transmit HIV. Yet only 69 percent of people diagnosed with HIV in the U.S. are virally suppressed and benefiting from HIV treatment.

HIV can be a fatal disease if access to comprehensive care and treatment is interrupted or unavailable. Healthcare, including antiretroviral therapy, involves at least twice-yearly medical appointments and laboratory monitoring. For some, substance use and mental health treatment, as well as treatment for other conditions common among people with HIV (diabetes, cardiovascular disease and cancer) is necessary.

Prior to the Affordable Care Act and the Medicaid expansion, 40 percent of my patients were uninsured. Twelve years later, that number had dropped to 10 percent, approaching the national rate of 8 percent . Nationally, nearly 50 percent of people with HIV now have Medicaid coverage.

Before the Affordable Care Act, our largely employer-based healthcare system excluded most people with HIV from health coverage due to pre-existing conditions and other insurer practices. The primary pathway to Medicaid for low-income people with HIV was through the Social Security Insurance Program , which required them to be disabled in addition to having very limited or no income.

When Medicaid expansion launched in 2014 in my state and others that adopted it , there were tears of relief. My uninsured patients for the first time had access to health insurance offering reliable coverage for the comprehensive care their lives depend on.

Now that coverage is at risk. The 2025 H.R. 1 legislation requires most Medicaid expansion enrollees between ages 19 and 64 to complete and report at least 80 hours of work or “community engagement” activities per month beginning Jan. 1, 2027. Recognizing the importance of health coverage to certain populations, H.R. 1 included an exclusion from the requirements for people with serious or complex conditions that did not require disability or impairment.

Unfortunately, though, the Centers for Medicare and Medicaid Services appear to have abandoned that exclusion. The center’s interim final rule implementing the work requirements stipulates that people with HIV and other serious or complex conditions must be seriously impaired by their condition to qualify for the exclusion.

Although requiring Medicaid expansion enrollees to work and regularly report work or community engagement hours may seem simple, it does not reflect the reality of my patients’ lives. Navigating administrative hurdles to access healthcare can be challenging for any of us. These bureaucratic challenges are magnified for my patients, who live on low incomes and often lack transportation or home access to the internet, personal computers or smart phones. Their health can rapidly deteriorate if they miss medical appointments or are unable to fill a prescription.

Every day, I see the consequences of medical red tape and how missing deadlines can lead to months of interrupted HIV therapy that can result in permanent harm to the immune system or death. These logistical obstacles are also costly for our clinic. Nearly 40 percent of our patients have Medicaid, 90 percent of whom require help every six months filing paperwork to maintain their health coverage. The new requirements will place additional strain on medical teams who are already managing significant workloads.

And to what end? Several states have already experimented with work requirements. One state, Arkansas , saw increases in uninsured rates but not in employment.

Whereas my patient’s late HIV diagnosis highlights the broken parts of our healthcare system, the Medicaid expansion has for more than a decade demonstrated what works, providing affordable health coverage to people with low incomes and improving their health and the health of our communities .

Reliable access to healthcare is a necessity for people with HIV and others with serious or complex conditions. After seeing what a difference the Medicaid expansion has made, my hope is that policymakers will not roll back progress by allowing red tape to take away this lifeline from their most vulnerable constituents.

Alice Thornton, M.D., FIDSA, is vice chair of the HIV Medicine Association.