New Medicaid work rules are putting rare disease patients' coverage at risk

President Donald Trump signed the "One Big, Beautiful Bill Act" into law last July, which requires Medicaid recipients to work, volunteer, or complete job training for 80 hours each month to maintain their benefits. The rule applies to the 40 Medicaid expansion states plus Washington D.C. and takes effect no later than January 1, 2027. Some states, including Nebraska, are rolling out the requirements as soon as next week, according to CNBC.

The law includes exemptions for pregnant women, individuals with a documented disability, parents or guardians of disabled children under 14, and those deemed "medically frail." The Centers for Medicare and Medicaid Services also provided guidance that expansion states may allow individuals to self-attest that they cannot meet the requirements through 2027.

But advocacy groups say the exemptions leave too many people exposed. Because most rare diseases lack their own dedicated ICD diagnostic code, the number of rare disease patients who will successfully claim the disability exemption remains an open question. States may also interpret "medically frail" differently, meaning a patient who qualifies for an exemption in one state may not qualify in another.

National Organization for Rare Disorders CEO Pamela Gavin said several groups within the rare disease community are at particular risk. "The undiagnosed are one group. They're often really sick without a definitive diagnosis," Gavin said. She also flagged patients with episodic or progressive conditions whose ability to work can shift month to month, people undergoing intensive treatment or clinical trials, and caregivers of medically complex dependents.

Gavin described a scenario in which a patient meeting work requirements suffers a sudden disease flare, is hospitalized, and temporarily cannot work — potentially losing coverage at the moment they need it most. If they then appeal a coverage denial, they may lose access to specialty medications during that process, she said.

"If somebody is undiagnosed, that diagnostic work can be absolutely critical to getting them on the right pathway for clinical care and treatment," Gavin said.

The National Organization for Rare Disorders submitted its public comment on the requirements on Wednesday. CMS's public comment period closes today.

Disabled individuals account for nearly $21,000 of Medicaid spend per person on average — almost three times the average American — according to analysis by KFF cited by CNBC.

Gavin urged patients to keep their contact information current with their Medicaid agency, organize medical records, and stay informed about their specific state's implementation, adding that patients should not delay action until a crisis forces their hand. "Don't wait until something catastrophic happens," she said.