Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases.
The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS Medicaid Community Engagement Requirements could create unintended challenges for people living with rare diseases and the caregivers who support them across the 42 states and the District of Columbia where these requirements are expected to apply to Medicaid expansion adults.
While NORD recognizes CMS’s goal of promoting accountability and engagement within the Medicaid program, we are concerned that these new requirements may rely too heavily on standardized verification systems and narrow definitions of medical frailty that do not fully reflect the realities of living with a rare disease. As a result, eligible individuals could face unnecessary barriers to maintaining coverage due to administrative burdens, documentation requirements, or systems that fail to recognize the complexity and variability of rare diseases.
Rare diseases are often difficult to diagnose, poorly understood, and do not fit neatly into traditional healthcare or disability classification systems. Of the more than 10,000 known rare diseases, only a very small percentage have a specific ICD-10 diagnostic code. Because ICD-10 codes are frequently used to classify and verify medical conditions, these gaps may create challenges for patients seeking to demonstrate eligibility for exemptions or other protections available under the guidance.
NORD is also concerned that the guidance does not clearly address individuals participating in clinical trials or other forms of medical research. For many people living with rare diseases, participation in research is essential, not only for advancing scientific understanding, but also as an important part of their care journey and access to potential treatment options.
NORD remains concerned that coverage disruptions can occur when administrative requirements become difficult to navigate, even among individuals who remain eligible for Medicaid benefits. As states consider implementation approaches, it will be critical to ensure that eligible individuals do not lose coverage because of procedural barriers rather than changes in eligibility.
NORD will continue working closely with policymakers, state Medicaid leaders, patient advocacy organizations, healthcare providers, and its network of more than 150 academic medical and research institutions within its NORD® Rare Disease Centers of Excellence network to support patient-centered implementation approaches that protect continuity of care, preserve access to treatment, and minimize avoidable coverage disruptions
In the meantime, NORD encourages states to reference its May 18, 2026, Medicaid Work Requirements Implementation Guidance, particularly recommendations 3–6, which focus on engaging patients and caregivers in implementation design, broadly interpreting medically frail exemptions where permitted, utilizing available state flexibility, and protecting caregivers throughout the implementation process.
The success of any Medicaid policy should ultimately be measured by whether eligible individuals can maintain access to the care they need. NORD stands ready to work with federal and state leaders to ensure implementation reflects the unique needs of people living with rare diseases and the caregivers who support them.
Pamela K. Gavin, CEO
National Organization for Rare Disorders (NORD)
