Comment on CMS-2026-2081-0001
The ALS AssociationSupportAdvocacy
Summary: The ALS Association, a nonprofit organization, supports the preservation and strengthening of the Essential Health Benefits framework to ensure timely access to care for individuals with rapidly progressive diseases like ALS. They argue that coverage must be evaluated based on meaningful access and clinical timeliness rather than just nominal coverage or premium costs.
The ALS Association appreciates the opportunity to provide comments in response to the Centers for Medicare & Medicaid Services’ Request for Information regarding the Essential Health Benefits framework. Because ALS is a rapidly progressive disease, access delayed often becomes access denied. Coverage policies, utilization management requirements, benchmark plan design decisions, and regulatory review processes must account for the reality that individuals living with ALS can experience substantial and irreversible functional decline within a matter of months. Unlike many chronic conditions, lost function often cannot be recovered. Therefore, access standards must be evaluated not only on whether coverage exists, but whether medically necessary care can be obtained in time to preserve health, independence, and quality of life.
As CMS evaluates the future of the Essential Health Benefits framework, the ALS Association urges the agency to preserve and strengthen policies that ensure timely access to medically necessary care, reflect advances in clinical practice and scientific innovation, reduce unnecessary administrative barriers, and protect people living with disabilities and serious progressive illnesses from benefit designs that limit meaningful access to care.