Nobody plans to be a rare disease patient. But if that is your life, Medicaid is often the reason treatment stays possible.
On Jan. 1, 2027, Medicaid's rules change for a lot of people.
Across 40 states and Washington, D.C., Medicaid recipients will need to meet a new monthly test. To keep coverage, they will need to spend 80 hours a month working, volunteering, or doing job training.
The work requirement comes from the federal budget bill President Donald J. Trump signed last July. People call that law the One Big, Beautiful Bill Act.
CMS issued guidance last month. The public comment period on that guidance closes this week.
NORD, a rare disease advocacy group, submitted its official comment on Wednesday.
The federal deadline for putting the rules in place is January 2027. Nebraska is moving faster and will begin next week.
The policy is moving quickly because many key details were left to states. States will decide what counts as "medically frail" and whether to accept self-attestation. Because states have so much discretion, patient groups fear that people without a confirmed diagnosis, family members providing care, and patients with symptoms that vary month to month could fall out of the program.
For rare disease patients, this is more than an administrative concern. Medicaid is often the payer that keeps treatment accessible, and losing coverage can quickly turn manageable costs into unaffordable bills.
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The new rules include exemptions, but they do not cover everyone. A parent or guardian of a child with a disability under 14 is exempt from the hourly requirement.
Beyond that, the rule gets blurry.
Few rare diseases have their own code in ICD, the diagnostic classification system used by clinicians. So the number of patients who can satisfy the exemption for people with a documented disability is uncertain.
Some patients do not have a diagnosis yet. Others have symptoms that come and go, so their ability to work can change from week to week.
Patients in clinical trials or undergoing intensive treatment may need to travel or move temporarily for care. The work requirement could force them to turn down those options or lose health coverage.
There are also people caring for children or adults with complex medical needs. Gavin said medically complex children and adults should not lose their benefits when the administrative system fails to account for the heavy caregiving responsibilities their families take on.
Another part of the guidance could help, but only up to a point. Through 2027, states can let people sign a form saying they cannot meet the work requirement, a step known as self-attestation.
That option is not required, so some states will offer it and others will not. The permission expires after 2027.
A KFF analysis put average Medicaid spending for disabled enrollees at about $21,000 per person. That's almost three times the average American.
Gavin said coverage loss can show up fast. "But it will hit them fast when they get a denial or a letter saying they are no longer covered - or when they go to their local pharmacy and something that cost $5 suddenly costs $1,000."
"What do they do? Choose not to be treated?" she said.
Advocates say the rules remain unclear, and states have little time to build a process that gives rare disease patients a fair chance to prepare.
Gavin said many people will not understand what is happening until it happens. "The majority of people, if they're not advocates, are just trying to survive in the rare disease space," she said. "They're living day to day and struggling with a whole host of issues, many of which have financial, mental and behavioral health consequences."
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