New Medicaid work rules could cause patients to lose coverage, rare disease advocates warn
📰 source: cnbc_topnews · 💼 business
medicaid work requirements signed into law last july as part of the 'one big, beautiful bill act' will start hitting recipients in 40 expansion states plus dc on january 1, 2027. they must work, volunteer, or train 80 hours a month to keep coverage. rare disease advocates say the rules are vague and could cause patients to lose access to care.
exemptions exist for pregnant women, people with documented disabilities, caregivers of disabled children under 14, and the 'medically frail.' but states interpret that loosely, and rollout is uneven — nebraska starts next week. only a small fraction of rare diseases have unique icd codes, so many patients may not qualify for disability exemptions. cms's comment period closes this week; nord submitted its comments wednesday. kff finds disabled individuals average nearly $21,000 in medicaid spend per person, roughly triple the overall average.
nord ceo pamela gavin says many patients don't realize they're on medicaid — it goes by names like masshealth — and could lose coverage precisely when a disease flare-up hits, forcing a choice between treatment and paperwork.
why it matters: medicaid work rules could strip coverage from rare disease patients during flare-ups, when they need care most.
source: cnbc_topnews
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