NORD Advocates for Essential Modifications to Medicaid Work Requirement Standards
The National Organization for Rare Disorders (NORD) has formally appealed to the Centers for Medicare & Medicaid Services (CMS) to reconsider its interim final rule regarding Medicaid Community Engagement (Work) Requirements. In remarks made just before the public comment period ended on July 31, 2026, NORD expressed serious concerns that the current regulations could inadvertently jeopardize access to Medicaid for individuals afflicted with rare diseases unless vital patient protections are incorporated.
Kathryn Lowell, the Executive Vice President of Government Affairs at NORD, articulated the organization's position, stressing the importance of amending the rule to better reflect the intent of Congress. "We appreciate CMS's willingness to receive feedback on this crucial policy. However, without significant amendments, individuals afflicted with rare diseases may face needless obstacles that could hinder their access to Medicaid benefits," she stated. Lowell pointed out that Congress had specifically designed an exemption for medically frail individuals, yet the interim rule adds an extraneous 'ability to work' test, which contradicts the legislative intention.
In its submission, NORD outlined several key recommendations aimed at aligning the final rule with congressional intent, as well as enhancing safeguards for medically frail patients.
1. Eliminate Additional Work Ability Assessment: NORD calls for the removal of the 'ability to work' assessment from the current exemptions, thereby favoring a ruling that matches the legislative intent set forth by Congress.
2. Utilize the NORD® Rare Disease Database: It is suggested that the NORD® Rare Disease Database serve as a supplemental tool for verifying the classification of conditions as rare and for accurately identifying medically frail individuals who may not conform to standard diagnostic codes.
3. Widen Medical Frailty Definitions: NORD seeks to expand eligibility criteria for medical frailty to include attestation from healthcare providers and other clinical evidence, rather than relying solely on specific diagnosis codes.
4. Safeguard Clinical Trial Participants: The organization advocates for special recognition of individuals involved in clinical trials—often the only treatment option available for those with rare diseases—when it comes to determining exemptions.
5. Establish Permanent Exemptions for Lifelong Conditions: NORD urges the provision of enduring exemptions for patients with chronic, degenerative, or terminal rare diseases.
6. Enhance State Flexibility: Finally, NORD calls for greater implementation flexibility for states, allowing self-attestation options to minimize administrative errors and prevent eligible patients from losing their vital Medicaid coverage.
Currently, over 30 million Americans are affected by one of the 10,000 recognized rare diseases, yet only a fraction of these conditions possess unique ICD-10 codes. NORD warns that relying heavily on diagnosis codes or overly restrictive criteria may overlook individuals whose conditions do not fit into existing frameworks. "Access to Medicaid should not hinge upon geographical location," stated Lowell. "Congress's intent was to protect medically frail individuals, and this protective framework should be uniformly applied across states to avoid interpretation discrepancies and bureaucratic limitations."
According to NORD, Medicaid is an essential lifeline for countless Americans, and it is critical to maintain its role as a reliable safety net for patients and families alike. In recent months, NORD has established collaborative efforts with state Medicaid authorities to offer practical guidance and resources for implementing these proposed changes. The organization remains committed to working alongside CMS and state Medicaid agencies to ensure the needs of medically frail patients are met and that they maintain access to necessary healthcare services.
Founded in 1983, NORD continues to be a leading nonprofit entity dedicated to enhancing the well-being of the rare disease community, in alliance with over 350 member organizations and 49 designated NORD Rare Disease Centers of Excellence. More information can be found at rarediseases.org.
Kathryn Lowell, the Executive Vice President of Government Affairs at NORD, articulated the organization's position, stressing the importance of amending the rule to better reflect the intent of Congress. "We appreciate CMS's willingness to receive feedback on this crucial policy. However, without significant amendments, individuals afflicted with rare diseases may face needless obstacles that could hinder their access to Medicaid benefits," she stated. Lowell pointed out that Congress had specifically designed an exemption for medically frail individuals, yet the interim rule adds an extraneous 'ability to work' test, which contradicts the legislative intention.
In its submission, NORD outlined several key recommendations aimed at aligning the final rule with congressional intent, as well as enhancing safeguards for medically frail patients.
Key Recommendations from NORD:
1. Eliminate Additional Work Ability Assessment: NORD calls for the removal of the 'ability to work' assessment from the current exemptions, thereby favoring a ruling that matches the legislative intent set forth by Congress.
2. Utilize the NORD® Rare Disease Database: It is suggested that the NORD® Rare Disease Database serve as a supplemental tool for verifying the classification of conditions as rare and for accurately identifying medically frail individuals who may not conform to standard diagnostic codes.
3. Widen Medical Frailty Definitions: NORD seeks to expand eligibility criteria for medical frailty to include attestation from healthcare providers and other clinical evidence, rather than relying solely on specific diagnosis codes.
4. Safeguard Clinical Trial Participants: The organization advocates for special recognition of individuals involved in clinical trials—often the only treatment option available for those with rare diseases—when it comes to determining exemptions.
5. Establish Permanent Exemptions for Lifelong Conditions: NORD urges the provision of enduring exemptions for patients with chronic, degenerative, or terminal rare diseases.
6. Enhance State Flexibility: Finally, NORD calls for greater implementation flexibility for states, allowing self-attestation options to minimize administrative errors and prevent eligible patients from losing their vital Medicaid coverage.
Currently, over 30 million Americans are affected by one of the 10,000 recognized rare diseases, yet only a fraction of these conditions possess unique ICD-10 codes. NORD warns that relying heavily on diagnosis codes or overly restrictive criteria may overlook individuals whose conditions do not fit into existing frameworks. "Access to Medicaid should not hinge upon geographical location," stated Lowell. "Congress's intent was to protect medically frail individuals, and this protective framework should be uniformly applied across states to avoid interpretation discrepancies and bureaucratic limitations."
According to NORD, Medicaid is an essential lifeline for countless Americans, and it is critical to maintain its role as a reliable safety net for patients and families alike. In recent months, NORD has established collaborative efforts with state Medicaid authorities to offer practical guidance and resources for implementing these proposed changes. The organization remains committed to working alongside CMS and state Medicaid agencies to ensure the needs of medically frail patients are met and that they maintain access to necessary healthcare services.
Founded in 1983, NORD continues to be a leading nonprofit entity dedicated to enhancing the well-being of the rare disease community, in alliance with over 350 member organizations and 49 designated NORD Rare Disease Centers of Excellence. More information can be found at rarediseases.org.
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