Kathryn Lowell, executive vice president of government affairs at NORD, argues that the agency’s interim rule drifts significantly from the legislative intent of Congress. While lawmakers included specific exemptions for medically frail individuals, the current CMS proposal introduces an additional “ability to work” test that creates unnecessary barriers for patients. NORD is pushing for a total removal of this test to ensure that eligibility remains aligned with the original statutory protections.
NORD Challenges CMS Medicaid Rules Over Rare Disease Coverage Risks
The National Organization for Rare Disorders has formally challenged the Centers for Medicare & Medicaid Services over new work requirements for Medicaid recipients. The organization warns that the current interim rule imposes restrictive administrative hurdles that threaten to strip coverage from millions of medically frail patients living with rare conditions.
Beyond legal alignment, the organization advocates for a more sophisticated approach to identifying patients. Currently, fewer than 500 of the 10,000 known rare diseases possess unique ICD-10 diagnostic codes, leaving millions of patients vulnerable to administrative oversight. NORD proposes that CMS integrate its own Rare Disease Database as a supplemental reference tool to help verify conditions that traditional coding systems fail to capture. They further recommend that states permit clinician attestation rather than relying solely on rigid diagnosis codes, while also granting permanent exemptions for those suffering from degenerative or terminal illnesses. By providing states with greater flexibility and recognizing clinical trial participation as a qualifying activity, the organization aims to prevent coverage disruptions for the 30 million Americans currently managing rare diseases.
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