Changes to Medicaid could have severe consequences for Americans with HIV
Sarah Boden | July 13, 2026
Without Medicaid, Deedee Burris, 53, of Chicago might not be here, or at least he'd likely be a lot less healthy.
Burris was diagnosed with HIV in 1995, and, for much of the past 15 years, he's been enrolled in Medicaid, a public insurance program that is jointly funded by the federal and state governments. It's provided Burris with affordable, consistent treatment that turned a fatal condition into a chronic illness.
"It plays a big role. You're able to get your medication, you're able to go to your doctor's visits, your ER [emergency room] visits," he said.
Medicaid covers 46% of people in the United States living with HIV, making it the largest source of insurance for Americans with this diagnosis. Eligibility is primarily determined by annual income—in most states the cutoff is $22,025 for a single adult. (Other factors include age and disability status.)
But starting January 1, 2027, Medicaid is changing in a big way, and the implications for people with HIV are severe.
“We could certainly see increased HIV cases as a result.”
A new rule, called the community engagement requirement, stipulates that adults must work, volunteer, or attend an educational or training program for at least 80 hours per month. Enrollees will have to verify that they meet this requirement twice a year or lose coverage.
It's expected that the additional administrative hurdles will be too onerous and complex for some people, including those with HIV. Burris predicts that some patients will lose access to treatment.
"It's scary. It's very scary," he said.
Advocates and policy experts who spoke to CIDRAP News for this story agree with Burris and warn that the loss of Medicaid coverage will not only harm individuals but public health as a whole.
"We could certainly see increased HIV cases as a result," said Lindsey Dawson, MA, associate director of the HIV policy program at KFF, a nonpartisan health policy research nonprofit.
‘Paperwork is really hard’
The work requirements were created under the One Big Beautiful Bill Act, which Congress passed in 2025 to pay for tax cuts.
The legislation was designed to make it harder for people to stay on Medicaid because the fewer people enrolled, the more money saved, said Carmel Shachar, JD, MPH, the faculty director of Harvard Law School's Health Law and Policy Clinic.
"When you start putting in procedural barriers, people just drop off," said Shachar. "Paperwork is really hard."
Some 11% of people with HIV have a substance use disorder. Also, compared with the general population, they're more than twice as likely to be diagnosed with a major depressive or bipolar disorder.
“When you start putting in procedural barriers, people just drop off.”
These comorbidities already make it difficult to manage the complexities of HIV treatment, said Carl Schmid, MBA, executive director of the HIV and Hepatitis Policy Institute. Coupled with the challenges of being low-income, Schmid anticipates some people with HIV won't be able to navigate the additional administrative hurdles and lose their coverage.
"It's inhumane," he said.
Work requirement could backfireAntiretroviral therapy (ART) suppresses the amount of HIV in someone's blood to undetectable levels. With this treatment, people can expect to live normal life expectancies and can't transmit HIV through sex, which slows the spread of the virus.
But without ART, HIV destroys a person's immune system. Infections that cause illnesses like tuberculosis, which can damage nearly every organ in the body, become inevitable and leave people permanently disabled.
Therefore, it's fiscally imprudent to force people with HIV off Medicaid, said Amy Killelea, JD, an expert on HIV financing at Georgetown University's Center on Health Insurance Reforms.
"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," they said.
Initially, it seemed the Trump administration agreed that an HIV diagnosis should exempt people from the new work requirements. When the Centers for Medicare and Medicaid Services (CMS) allowed Nebraska to start work requirements for Medicaid in May, a full eight months early, HIV was one of the exempt conditions. But that's no longer the case.
“It will have a sort of economic impact in terms of more transmissions.”
This suggests that someone within the Trump administration disagreed with the direction the work requirements were taking, as evidenced by how different the final interim rule is from what Nebraska implemented, and successfully advocated for a stricter version, said Shachar.
"Who it was, it's harder to say," she said.
States warn that Medicaid changes will cause chaosCMS didn't respond to CIDRAP News' request to comment on why people with HIV are not exempt from the new work requirement.
However, the community engagement rule states that "a well-designed community engagement requirement may benefit individuals so that they are not dependent, demoralized, or stuck in situations that hinder their economic, physical, and mental state, and that Medicaid should be a short-term hand up, not a lifetime handout."
The difference between Nebraska's initial work requirement and the final interim rule is cited in a lawsuit filed last month by 23 states, the District of Columbia, and two Democratic governors. The plaintiffs say these pending Medicaid changes will sow chaos, cause irreparable harms, and "further strain safety net providers."
Among the complaint’s grievances is the short timeline that states have to implement an administrative framework to assess whether someone is medically frail enough to be excused from the work requirement.
Tim Horn, MPH, director of medication assistance at the National Alliance of State and Territorial AIDS Directors, agrees there isn't enough time for states to implement the new work requirement, at least not in a way that ensures people who can't work remain covered.
"This is going to require a lot of work to really begin to think about what this looks like clinically, to really begin to think about what is feasible," he said.
ART assistance programs already low on fundsAs people fall off Medicaid, it's anticipated that tremendous pressure will land on the Ryan White HIV/AIDs Program. Often referred to as a "payer of last resort," the federally funded safety net provides ART medications to low-income people through its AIDS Drug Assistance Program (ADAP).
ADAP is how Burris gets his ART medications. In January, he lost Medicaid coverage because his household income exceeded the program's cap. Purchasing a plan on the individual marketplace was too expensive, leaving ADAP as Burris' only option.
Rising premiums and the sunset of enhanced tax subsidies are prompting more people to forgo insurance, leading some states to restrict eligibility for ADAP.
Florida is perhaps the direst example; the state briefly cut the ADAP income eligibility limit from 400% to 130% of the federal poverty level. The decision was reversed after lawsuits were filed by the AIDS Healthcare Foundation, though a program that helped people with HIV pay their monthly insurance premiums was not brought back.
Another factor fueling ADAP's growing budget crisis is that it hasn'treceived an increase in federal funding since 2014.
Also in 2014, the Affordable Care Act (ACA) allowed states to increase Medicaid eligibility by raising the income cap and to enroll childless adults. A 2017 study found that, in Medicaid expansion states, reliance on the Ryan White Program and uncompensated care dropped by more than half.
If the new work requirements reverse this trend, ADAP might not have enough money to meet demand. According to an April 2026 report from NASTAD, Iowa and Utah already have waiting lists.
This is disheartening, said Horn, as the United States has made significant progress in the fight against HIV, including a 12% drop in the transmission rate from 2018 to 2022.
"We're going to backslide," he said.
Or, as Georgetown's Killelea put it, "We can't end the HIV epidemic without Medicaid."
Contact:
Jim Wappes
jwappes@umn.edu
University of Minnesota
Source: CIDRAP - Center for Infectious Disease Research & Policy - University of Minnesota
https://www.cidrap.umn.edu/hivaids/changes-medicaid-could-have-severe-consequences-americans-hiv
“Reproduced with permission - CIDRAP - Center for Infectious Disease Research & Policy - University of Minnesota”
CIDRAP - Center for Infectious Disease Research & Policy - University of Minnesota
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