Too sick to work, but can they prove it? New Medicaid rule worries patients

NEW YORK (AP) — On hot afternoons, DeAnna Brandon’s three dogs zag around while she splashes in a backyard kiddie pool with her grandkids. These are the moments the 48-year-old blood cancer survivor cherishes — and wonders if she’ll get to have in the years to come.

Brandon, who lives in Rockwell, North Carolina, is worried that new Medicaid work requirements starting next year could jeopardize her health coverage. She had expected to qualify for a medical frailty exemption, but new guidance introduced by President Donald Trump's administration last week has thrown that into question.

The interim final rule released by the Centers for Medicare and Medicaid Services means being sick with extreme exhaustion and memory challenges related to her treatments may not be enough for Brandon to evade the new work requirements. She’ll have to attest and later prove that those symptoms “significantly impair” her ability to fulfill the new mandates.

If the government doesn’t accept her case, she could lose her coverage — and the twice-monthly maintenance chemotherapy that keeps her multiple myeloma in remission. Working is “outside of the realm of possibility for me,” she said in an interview.

“I was always a push-through-it person — you know, ‘Oh, you’re tired. Push through,’” Brandon said. “It’s hard to explain to people you can’t push through it.”

Health analysts have sounded the alarm about the Republican Trump administration’s newest guidance, which differs from what states had been expecting. Experts said it will put more Americans at risk of losing their health insurance and force states to scramble in their already harried efforts to implement the changes on time.

“This will mean more paperwork for Medicaid patients — specifically for the sickest Medicaid patients,” said Adrianna McIntyre, a professor at Harvard University’s school of public health. That, she said, "is going to push in the direction of more people needlessly losing coverage.”

Medical frailty rules may mean paperwork nightmares for sick people

The new Medicaid restrictions were part of Trump’s big tax and policy law in 2025. The change affects those covered through an expansion, which most states chose to make, that gave more lower-income people access to the government’s safety net healthcare program.

Expansion enrollees aged 19 to 64 will have to show that they work or do community service at least 80 hours a month or are in school at least half the time. There are exceptions for those considered medically frail or in addiction treatment programs, among others.

Last week’s announcement from CMS caught states off guard with a new definition of medical frailty. The law had said medically frail people include those who have substance use disorders, disabilities or serious medical conditions. But the CMS rule last week went further, saying someone’s condition must “significantly impair” their ability to work, volunteer or attend school at the rates required in the law for them to be granted an exemption.

In 2027 and once in 2028, the patient can attest that they meet this definition. But when they try to renew coverage in 2028, they’ll need to prove it.

Advocates said it’s unclear what kind of documentation could prove that point. They said doctor notes may be required — something some providers don’t feel comfortable writing. Medicaid enrollees fighting disease may carry the bureaucratic burden.

Brandon, who tried to prove she couldn’t work to access disability benefits during her active cancer treatment and failed, said she’s worried about the hoops she and other patients may need to jump through.

“It’s not that easy — you may have to go through four doctors,” Brandon said. “If you’re already battling an illness like this, you don’t have the physical or the mental or the emotional energy to do that all the time.”

States and advocates are confused by the government's approach

States have been planning to use Medicaid claims data and other data sources to automatically exempt eligible enrollees whenever possible.

CMS Administrator Dr. Mehmet Oz on a call with reporters last week endorsed that approach, saying he hoped most people would be helped "without ever having to talk to anybody.”

Asked to clarify how the rule should be implemented, CMS told The Associated Press in an emailed statement that the agency “chose not to allow states to categorically exclude individuals from work requirements based solely on a diagnosis or condition type.” For renewal in 2028, it said, “verification through claims data or other documentation will generally be required.”

But state Medicaid officials and consultants said Medicaid claims data doesn’t prove someone is significantly impaired from working, and they don’t know of any existing data that does. That has left them confused about how to honor the government's rule.

“States are going to be asked to make a determination using information that doesn’t exist in their systems,” said Kinda Serafi, a partner at the consulting firm Manatt Health who is working with states to make the changes.

One state, Nebraska, started the new Medicaid work requirements ahead of schedule. But it used diagnostic codes to identify people who are medically frail, and it therefore will likely have to rework its system, said Sarah Maresh, healthcare access program director at the advocacy group Nebraska Appleseed.

Maresh said she was concerned doctors in the rural state who are already reluctant to take Medicaid patients may decide to stop.

“They’re already drowning in paperwork, so to require them to do an additional step of certifying whether someone is able to work, I think is concerning,” she said.

Preparing for the Jan. 1 kickoff of the new policies is an immense and expensive task. A $200 million federal allotment is flowing to states to help, and CMS has partnered with technology companies to provide free and discounted services, but the tab for the additional technology requirements and more staff is likely to exceed $1 billion, according to an AP analysis. That extra cost will be borne by a mix of federal and state tax dollars.

Republicans say the rules will save Medicaid for those who need it most

Republicans promoting the new rules say they are commonsense measures to eliminate government freeloading and preserve benefits for people who need them most. Oz last week, citing a report by the conservative American Enterprise Institute think tank, said able-bodied people on Medicaid spend an average of 6.1 hours a day “watching TV or just hanging out.”

“This is a concern, not a criticism,” he said. “Work requirements are going to turn this around, we hope."

But current enrollees who don’t meet the work requirement threshold said that’s a misrepresentation of their experience.

Mids Meinberg, a 42-year-old freelance writer from New Jersey who lives with chronic depression and diabetes, said that even with his health issues, he’s proud to have found a meaningful career. But his conditions make him unable to work 80 hours a month. He said he thinks there are many people with disabilities who are “too disabled to work but not disabled enough for the state to think they can’t work.”

Brandon, in North Carolina, said she wants the government to understand that she’s “not just sitting around wasting time or being a drain on society.”

“I’m pouring into my grandchildren,” she said. “We’re valuable, and we can still contribute to our communities even if it’s not working.”