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Medicaid Work Rules Threaten Rare Disease Patients' Coverage

other · 2026-07-31

New work requirements for Medicaid, enacted by President Donald Trump in July 2025 through the 'One Big, Beautiful Bill Act,' are set to begin in several states, potentially jeopardizing coverage for patients with rare diseases. Beneficiaries in 40 expansion states and Washington D.C. will need to engage in work, volunteer activities, or training for 80 hours each month to keep their benefits, with full implementation scheduled for January 1, 2027. There are exemptions for pregnant women, those with disabilities, and caregivers of disabled children under 14. Advocacy organizations contend that these exemptions fall short, as numerous rare diseases do not have ICD codes. Pamela Gavin, CEO of NORD, highlighted the risks to vulnerable groups and the possibility of losing coverage during critical health situations. NORD has submitted feedback on the new requirements, with the CMS comment period ending today.

Key facts

  • President Donald Trump signed the 'One Big, Beautiful Bill Act' into law in July 2025.
  • Medicaid recipients in 40 expansion states plus D.C. must work, volunteer, or complete job training for 80 hours per month.
  • The rule takes effect no later than January 1, 2027, with some states like Nebraska implementing as early as next week.
  • Exemptions include pregnant women, individuals with documented disabilities, parents/guardians of disabled children under 14, and the 'medically frail.'
  • CMS guidance allows expansion states to permit self-attestation of inability to meet requirements through 2027.
  • Most rare diseases lack dedicated ICD diagnostic codes, complicating disability exemption claims.
  • States may interpret 'medically frail' differently, causing inconsistent coverage.
  • NORD CEO Pamela Gavin identified undiagnosed patients, those with episodic/progressive conditions, patients in intensive treatment or clinical trials, and caregivers as at-risk groups.
  • NORD submitted its public comment on Wednesday; CMS comment period closes today.
  • KFF analysis shows disabled individuals account for nearly $21,000 of Medicaid spend per person on average, almost three times the average American.

Entities

Institutions

  • Centers for Medicare and Medicaid Services
  • National Organization for Rare Disorders
  • KFF
  • CNBC

Locations

  • United States
  • Washington D.C.
  • Nebraska

Sources