Patients jockey for exemptions from Medicaid’s new work requirements

STAT News – Tuesday, May 12, 2026
By John Wilkerson

Patient groups are jockeying for exemptions from Medicaid work requirements, but the unusually fast implementation timeline for states is causing headaches.

Federal officials have until June 1 to tell states how to implement a provision of President Trump’s tax cut bill that requires certain Medicaid beneficiaries to show that they’re working, in school, or volunteering in order to keep their coverage. Once that regulation is out, states will have to put their systems in place by Jan. 1.

Advocates for people with certain diseases have been meeting with federal officials to urge that those patients be automatically exempt from the work requirements. For example, Patients with sickle cell disease recently met with White House budget officials to request an exemption. Advocacy groups for people with HIV are making a similar push.

If the forthcoming federal rule doesn’t make a specific exemption for a patient population, advocates will have to lobby every state, resulting in a patchwork of exemptions that makes it difficult to advise patients seeking Medicaid coverage. The HIV+Hepatitis Policy Institute has sent letters to all 50 states requesting an exemption from work requirements.

“We don’t know what every state is going to do,” said Carl Schmid, the group’s executive director. “And why should we have to go to every single state?”

The HIV/AIDS and sickle cell communities are making some similar arguments. Sickle cell disease is chronic with sudden flare-ups in pain that make uninterrupted coverage important. About half of patients with the disease are enrolled in Medicaid.

The work requirements law exempts people who are medically frail, so the federal government’s definition of the term could have a big impact on Medicaid enrollment. If it mandates broad exemptions, fewer people would likely lose coverage.

The Congressional Budget Office projected that work requirements would result in 5.3 million Americans losing Medicaid coverage over a decade, without finding other coverage.

Officials from the Centers for Medicare and Medicaid Services have been meeting privately with state representatives to provide them some guidance in advance of publishing the regulation. But no one else knows what administration officials are telling states during those meetings.

Nebraska was the first to implement work requirements, ahead of the deadline. The state created a 295-page list of Medicaid billing codes that correlate with conditions and diseases that are exempt from work requirements. People with HIV and sickle cell disease both made the list.

But it’s not clear whether federal officials will require other states to do likewise. Neither Nebraska nor CMS responded to questions about whether Nebraska’s list of medically frail beneficiaries will be federally mandated.

To deal with the tight deadline, the law directs the federal government to forgo the typical rulemaking process that includes public notice and comment.

Without the typical process, it’s tricky for advocates who are trying to protect patients and the community organizations that help people navigate the public health insurance program.

The last time Medicaid faced a major loss of enrollment, during the post-pandemic Medicaid unwinding, there was more time to prepare and the federal agency that runs Medicaid played a more central role, providing lots of public documents that patient advocates and community groups could use to help people understand whether they qualified for Medicaid, according to Tricia Brooks of the Georgetown Center for Children and Families.

“We’re not seeing that as much this time around,” Brooks said at an April 30 event sponsored by KFF. “If they don’t have that kind of information, they’re not going to be able to help in the same way they were able to help during unwinding.”

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