Deedee Burris, 53, credits Medicaid with maintaining his health and, quite possibly, his life. Diagnosed with HIV in 1995, Burris has relied on the public insurance program for the past 15 years. Medicaid has provided him with accessible and consistent treatment, transforming a life-threatening diagnosis into a manageable chronic condition. “It plays a big role. You’re able to get your medication, you’re able to go to your doctor’s visits, your ER visits,” he shared.
Medicaid is the primary insurance provider for a significant portion of individuals living with HIV in the United States, covering 46% of those with the diagnosis. Eligibility is largely determined by income, with most states setting the annual cutoff at $22,025 for a single adult, though age and disability status can also be factors.
However, a substantial change to Medicaid is set to take effect on January 1, 2027, with potentially serious consequences for people living with HIV. A new regulation, known as the community engagement requirement, mandates that adults must participate in work, volunteer activities, or educational/training programs for a minimum of 80 hours per month. Enrollees will need to provide proof of meeting this requirement twice annually to retain their coverage.
This additional layer of administrative complexity is anticipated to be an insurmountable hurdle for some, including those with HIV. Burris expressed concern that many patients will lose access to their necessary medical care, describing the situation as “scary. It’s very scary.”
Advocates and policy experts concur with Burris’s assessment, warning that the repercussions of losing Medicaid coverage will extend beyond individual hardship to impact public health broadly. “We could certainly see increased HIV cases as a result,” stated Lindsey Dawson, MA, associate director of the HIV policy program at KFF.
The work requirements were established as part of the One Big Beautiful Bill Act, passed in 2025 to offset tax cuts. According to Carmel Shachar, JD, MPH, faculty director of Harvard Law School’s Health Law and Policy Clinic, the legislation’s design aims to reduce Medicaid enrollment, thereby saving money. “When you start putting in procedural barriers, people just drop off. Paperwork is really hard,” Shachar explained.
Individuals living with HIV are disproportionately affected by mental health conditions and substance use disorders. Approximately 11% of people with HIV have a substance use disorder, and they are more than twice as likely as the general population to be diagnosed with major depressive or bipolar disorder. These co-occurring conditions already complicate the management of HIV treatment. Carl Schmid, MBA, executive director of the HIV and Hepatitis Policy Institute, anticipates that the added administrative burden will prevent some individuals with HIV from maintaining their coverage, deeming the situation “inhumane.”
The efficacy of antiretroviral therapy (ART) in suppressing HIV to undetectable levels allows individuals to live normal lifespans and prevents transmission through sexual contact, thereby slowing the virus’s spread. Without ART, HIV severely damages the immune system, leading to opportunistic infections and permanent disability. Consequently, removing access to Medicaid for individuals with HIV is viewed as economically shortsighted. “It will have a sort of economic impact in terms of more transmissions, and then for people who have HIV, of worse and more expensive outcomes,” noted Amy Killelea, JD, an expert on HIV financing at Georgetown University.
While the Trump administration initially considered exempting individuals with HIV from work requirements, this is no longer the case. The discrepancy between Nebraska’s early implementation, which exempted HIV, and the final rule suggests internal policy shifts.
Concerns are mounting from states regarding the potential chaos resulting from these Medicaid changes. The Centers for Medicare and Medicaid Services (CMS) did not provide comment on the exclusion of HIV from exemptions. However, the community engagement rule emphasizes that such requirements can empower individuals to avoid dependency and improve their overall well-being, positioning Medicaid as a temporary support rather than a permanent entitlement.
The contrast between Nebraska’s initial work requirement policy and the final interim rule is a central point in a lawsuit filed by 23 states, the District of Columbia, and two Democratic governors. Plaintiffs argue that the upcoming Medicaid modifications will create disorder, cause irreparable harm, and further strain safety net providers. A key grievance is the limited timeframe for states to establish systems for identifying individuals who qualify for medical exemptions from work requirements. Tim Horn, MPH, director of medication assistance at the National Alliance of State and Territorial AIDS Directors, agrees that states lack adequate time to implement these changes effectively while ensuring continued coverage for those unable to work.
As individuals lose Medicaid, increased pressure is expected on the Ryan White HIV/AIDs Program, a federally funded safety net that provides ART medications through its AIDS Drug Assistance Program (ADAP). Burris currently receives his ART medications through ADAP after losing Medicaid coverage due to exceeding the program’s income threshold. Rising insurance premiums and the expiration of enhanced tax subsidies are prompting more individuals to forgo insurance, leading some states to tighten eligibility for ADAP. Florida’s brief reduction of ADAP income eligibility from 400% to 130% of the federal poverty level exemplifies the challenges. Compounding these issues, ADAP has not received an increase in federal funding since 2014.
Prior to the Affordable Care Act’s expansion of Medicaid, the Ryan White Program served as a critical resource. However, studies have shown that in states that expanded Medicaid, reliance on the Ryan White Program and uncompensated care significantly decreased. If the new work requirements reverse this trend, ADAP may struggle to meet demand, with states like Iowa and Utah already reporting waiting lists. This development is concerning given the progress made in reducing HIV transmission rates, a 12% drop from 2018 to 2022. As Horn stated, “We’re going to backslide.” Killelea aptly summarized, “We can’t end the HIV epidemic without Medicaid.”
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