Will Medicaid’s new work requirements exempt people with HIV?

O. is very worried. 

The North Carolina part-time hospitality worker, age 40 and diagnosed with HIV in 2013, relies on Medicaid to cover his healthcare because his job does not. Among many other things, Medicaid covers his HIV regimen, the injectable drug Cabenuva, which he strongly prefers to pills, and whose sticker price is in the range of $50,000 a year. 

He’s on Medicaid because, in 2023, North Carolina followed the decade-long lead of about 40 other states and opted into federal Medicaid expansion. In North Carolina, this allowed unmarried adults like O., who were previously ineligible for Medicaid no matter how little they earned, to enroll in the program if they made no more than about $22,000 a year.

O. was eligible, so that’s exactly what he did, grateful that Medicaid covered far more than just HIV meds and care, as had been the case with the Ryan White AIDS Drug Assistance Program (ADAP), which covered him previously. 

But now he’s worried. That’s because of a provision in H.R. 1—the “Big Beautiful Bill” passed by the Republican-led Congress and signed into law by President Trump. Adults enrolled through Medicaid expansion are required to verify at least every six months that they are working, volunteering or attending school at least 80 hours per month to maintain coverage.As of now, people with HIV have not been given a categorical exemption from that rule.

O. currently works about 100 hours a month—but he worries that, were his employer to cut his hours, he might no longer qualify for Medicaid. 

“If I don’t get those 80 hours, I’m screwed,” he says. “It’s not good for my mental health having to think about that every single day.”

Requirements too complex to meet easily[11] 

H.R. 1 specifies that “medically frail” people would be exempt from the work requirements—and an HIV diagnosis has generally qualified people as “medically frail” for public health coverage purposes.

But on June 1, the federal Centers for Medicare & Medicaid Services (CMS), which is part of the Trump administration, issued an “interim final rule” (IFR) on the upcoming requirements that lists HIV as one of several conditions that don’t necessarily constitute an inability to work, study or volunteer—and hence, CMS was not going to earmark any of these conditions for automatic exemption from the work requirements. 

“We do not believe it is reasonable to categorically consider conditions as ‘serious or complex’ without factoring in criteria such as the severity of the condition,” reads the document, which also cited a 1999 Institute of Medicine report that says, “The conditions will not necessarily be serious and complex for all patients at all times.”

But, says Carl Schmid, director of the HIV+HEP Policy Institute, which issued a press release criticizing the lack of an HIV exemption for the work requirements, even if people living with HIV can work, which is often the case in the current age of highly effective, once-daily pill medications, they could face barriers like what O. worries about. 

“People’s income often jumps up and down, which could lead to them losing their insurance,” Schmid says. 

On top of that, he says, the Trump administration is currently trying to layer even more restrictions onto the language that was in H.R. 1, including a stricter definition of “medical frailty” and new limits on states’ ability to accept “self-attestation,” which basically accepts a person’s word that they are too sick to work instead of requiring documentation from a doctor or other sources. 

Self-attestation has long been seen as a necessary provision within an eligibility process to keep patients connected to coverage, because sometimes they can’t access back-up documentation quickly—or at all. 

“Medicaid is a program for very low-income people who are often dealing with other things like mental health and substance use,” Schmid says. “If it’s so easy to take HIV meds today, then why are only about 67% of people in the U.S. who know they are HIV-positive virally suppressed?” (Being virally suppressed is also known as being undetectable for the virus.) 

Burdensome work verification requirements, which can lead to someone being knocked off Medicaid if they don’t fulfill them perfectly and repeatedly, “is just going to make it worse,” Schmid says, when it comes to keeping Medicaid recipients with HIV on their meds. (States are racing against the clock to set up data systems that are supposed to allow verification to be tracked and logged.)

Reviews of outcomes of previous Medicaid work requirement policies in states including Arkansas, Michigan and New Hampshire showed that the policies led to thousands being knocked off coverage, largely because of the red tape behind trying to enforce the requirements, while not significantly increasing employment. (Many advocates believe point of the onerous new requirements is to reduce the Medicaid rolls via increased red tape.)

Schmid says he worries that if countless people with HIV are kicked off Medicaid—the program currently covers about 40% of the roughly 1.2 million Americans living with the virus—recipients will be crowded onto state ADAPs, which are already suffering restrictions and cuts in a growing number of states. For more than a decade, Congress has approved mostly level funding for Ryan White and ADAP, with only modest increases in spending that have not kept up with inflation or rising demand.

“My whole goal and concern is that we don’t want anyone to lose access to their health coverage,” he says.

On June 29, 25 states and the District of Columbia filed suit against the Trump administration over the interim final rule, arguing that it unlawfully narrows the definition of who qualifies as “medically frail.” The lawsuit specifically challenges the rule’s requirement that conditions such as HIV, cancer and end-stage renal disease have to also “significantly impair” a person’s ability to work in order to qualify for an exemption, contending the added paperwork and stricter standard could cause eligible people to lose health coverage.

A call to action

Meanwhile, the advocacy group AIDS United has issued an action alert for people to contact their governor and their representatives in Congress to “urge them to demand CMS delay the [interim final rule] and redraft it with a lawful, workable definition of ‘serious or complex medical condition' that covers people living with HIV.”

The alert also notes that H.R. 1 “included a mandatory exemption for people who are ‘medically frail or otherwise have special medical needs’—a category that Congress specifically designed to include people with serious or complex medical conditions like HIV.”

The interim final rule, it continues, “breaks that promise. The rule is invasive, subjective, unworkable, and not what the statute actually says. The concern is not that people living with serious conditions will refuse to engage with the system—it is that the system the IFR creates is so vague, so poorly designed, and so disconnected from how states actually determine eligibility that even people who are working, who want to comply, and who are legally entitled to an exemption will lose coverage anyway.”

That describes O.’s worries. “I really hope HIV gets an exemption from this. We can only maintain health in the face of HIV through the meds and care that the government allows us to have. Without them, you’re eliminating us.”