NORD Pushes CMS to Overhaul Medicaid Work Rule for Rare Disease Patients
Event summary
- NORD submitted formal comments to CMS on July 31, 2026, urging changes to Medicaid work requirement rules.
- The organization warns that the current rule could cause rare disease patients to lose coverage due to administrative barriers.
- NORD recommends eliminating an additional 'ability to work' test and expanding eligibility criteria for medically frail individuals.
- The NORD Rare Disease Database is proposed as a supplemental resource to better identify eligible patients.
The big picture
NORD's intervention highlights the tension between federal Medicaid policies and the needs of vulnerable patient populations. The organization's push for changes reflects broader concerns about healthcare access for individuals with rare diseases, who often face unique challenges in navigating complex medical systems. With over 30 million Americans affected by rare conditions, this advocacy effort could influence how states implement work requirements while balancing administrative efficiency with patient protections.
What we're watching
- Regulatory Alignment
- Whether CMS will adopt NORD's recommendations to align the final rule with congressional intent.
- Implementation Flexibility
- How states will adapt their Medicaid programs to accurately identify and protect medically frail patients.
- Patient Protection
- The effectiveness of NORD's proposed changes in preventing coverage disruptions for rare disease patients.