NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) formally urged the Centers for Medicare & Medicaid Services (CMS) to revise its Interim Final Rule implementing Medicaid Community Engagement and work requirements. In its official filing, the organization warned that the current structure of the rule could unintentionally cause eligible individuals living with rare diseases to lose vital Medicaid coverage unless critical patient protections are strengthened and clarified.
NORD submitted formal comments outlining a series of detailed recommendations designed to better align the federal rule with original congressional intent and safeguard medically frail individuals from administrative barriers that threaten their healthcare access. The intervention comes as healthcare advocates and policymakers grapple with the complex intersection of Medicaid enrollment guidelines and the unique vulnerabilities faced by patients with complex, chronic, and debilitating conditions.
According to Kathryn Lowell, Executive Vice President of Government Affairs at NORD, the organization appreciates the opportunity provided by CMS to comment on the rulemaking process, but serious concerns remain regarding how the policy will function in practice. Lowell emphasized that without meaningful adjustments, patients managing rare conditions could face steep procedural hurdles that jeopardize their continuity of care.
"Congress created an exemption for medically frail individuals, yet the interim rule adds an additional ‘ability to work’ test that was never part of congressional intent," Lowell said, pointing to what advocates view as a significant departure from statutory guidelines established by lawmakers. "We urge CMS to align the final rule with the law as Congress intended by removing that requirement and giving states the flexibility and tools they need to accurately identify medically frail patients and ensure they remain eligible for the care on which they depend."
The debate centers on the operational realities of implementing community engagement mandates within a diverse and fragmented healthcare landscape. More than 30 million Americans currently live with one of over 10,000 known rare diseases. However, the diagnostic infrastructure supporting this population remains severely limited. Fewer than 500 rare diseases possess unique, dedicated International Classification of Diseases (ICD-10) diagnostic codes.
NORD has cautioned federal regulators that relying primarily on standard diagnostic codes or overly narrow administrative criteria could easily cause eligible patients to be overlooked simply because their specific condition cannot be readily identified within existing administrative billing and coding systems. Without flexible alternative pathways for verification, patients with ultra-rare or less-common conditions risk falling through the cracks of the safety net.
Furthermore, the organization emphasized that access to essential healthcare programs should not be dictated by geography. Lowell underscored that a patient’s ability to maintain coverage under Medicaid must remain consistent regardless of state lines or administrative variations. Congress intended to protect medically frail individuals across the board, and those statutory protections should be applied uniformly in every state rather than being left vulnerable to differing local interpretations or administrative limitations.
Over the past several months, NORD has actively collaborated with state Medicaid leaders across the country, providing practical implementation guidance and operational resources to help navigate the transition. The organization maintains that state agencies require robust tools, clear definitions, and adequate administrative flexibility to accurately identify medically frail patients, minimize unnecessary coverage disruptions, and protect ongoing access to care for eligible people living with rare diseases.
As the rulemaking process continues, NORD has reaffirmed its commitment to partnering constructively with both CMS and state Medicaid agencies to ensure that administrative policies do not undermine the health and well-being of vulnerable patient populations. Medicaid has long served as an essential lifeline for millions of Americans, and advocates stress that preserving its role as a dependable safety net remains paramount as federal and state policies evolve.
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent nonprofit organization dedicated to improving the health and lives of more than 30 million Americans affected by rare diseases. Operating in partnership with more than 350 disease-specific member patient organizations and 49 designated NORD Rare Disease Centers of Excellence, the organization advances comprehensive care, innovative research, public education, and patient advocacy on behalf of the entire rare disease community.
