Medicaid work requirements raise rare disease coverage concerns
NORD warns new Medicaid work rules could leave rare disease patients, caregivers and undiagnosed people at risk of losing coverage.
By Maya Okafor · Markets Writer
· 3 min read
New Medicaid work requirements could create coverage risks for rare disease patients whose conditions make steady work difficult, according to the National Organization for Rare Disorders. For families that rely on Medicaid for specialists, drugs and diagnostic testing, a missed paperwork step or a sudden health flare-up could quickly become a major medical bill.
President Donald J. Trump signed the Federal Budget Reconciliation Bill, also called the “One Big, Beautiful Bill Act,” into law last July. The Trump administration issued guidance last month saying Medicaid recipients in the 40 Medicaid expansion states and Washington, D.C., will have to work, volunteer or take part in job training for 80 hours a month to keep benefits beginning Jan. 1, 2027.
Medicaid expansion covers nearly all adults with incomes up to 138% of the federal poverty level in states that adopted it, according to KFF. The new rules do not apply in every state the same way or on the same schedule. CNBC reported that Nebraska is set to begin the requirements as soon as next week, even though expansion states must implement them no later than January.
How could Medicaid work requirements affect rare disease patients?
NORD CEO Pamela Gavin told CNBC Cures that rare disease patients may lose coverage even when they qualify for help, especially if state systems fail to identify their medical situation. She said many affected people are focused on daily medical, financial and mental health pressures and may not realize their state health plan is part of Medicaid because the program can have different names by state, such as MassHealth in Massachusetts.
The administration’s guidance includes exemptions for some people who cannot work. CNBC reported that pregnant women, people with documented disabilities, and parents or guardians caring for a disabled child under 14 are excluded from the work rules. People classified as “medically frail” may also qualify, and CMS guidance says expansion states may allow people to self-attest through 2027 that they cannot meet the requirement.
Rare disease advocates say those protections may still leave gaps. States may define “medically frail” differently, so the same patient could be treated differently depending on where they live. CNBC also reported that only a small share of rare diseases have their own ICD code, the standardized diagnosis code doctors use in medical records, which could make some patients harder for automated systems to flag.
Gavin said the most exposed groups include undiagnosed patients, people without a specific ICD-10 diagnosis code, patients with episodic or progressive diseases, people in intensive treatment or clinical trials, and caregivers for medically complex children or adults.
A patient could be working enough hours one month and then fall short after a hospitalization or treatment, Gavin told CNBC. If that person is recovering while also gathering proof for Medicaid, she warned, coverage could lapse when the person needs care most.
What should Medicaid patients do now?
Gavin said patients and caregivers should make sure their Medicaid agency has current contact information, including address, phone number and email. She also urged families to open every Medicaid notice, keep coverage documents organized, and make sure medical records and provider information are current.
State rules will matter. Gavin told CNBC that patients should contact their Medicaid case contact to confirm whether the requirements apply to them and follow what their state is doing, since implementation will vary.
NORD submitted a public comment to CMS on Wednesday, according to CNBC, as the agency’s public comment period on the work requirements closes this week. KFF has found that disabled Medicaid enrollees account for nearly $21,000 in spending per person on average, almost three times the average American, underscoring how costly any coverage interruption can become for medically vulnerable households.
This story draws on original reporting from CNBC.
