Comment on CMS-2026-2047-0002
Team Titin, Inc.OpposeAdvocacy
Summary: Team Titin, Inc., a nonprofit serving people with titin-related muscle and heart disorders, opposes the proposed community engagement requirements in CMS-2454-IFC. They argue the rule creates risks of Medicaid coverage loss for individuals with complex, chronic conditions and their caregivers due to narrow frailty standards and burdensome documentation requirements.
Team Titin, Inc., a nonprofit organization serving people living with TTN (titin)-related muscle and heart disorders and their family caregivers, opposes the community engagement implementation details set forth in CMS-2454-IFC. These provisions create serious risks that people with rare, complex, lifelong conditions—and the family members who make community living possible—will lose or experience interruptions in Medicaid coverage even when they should qualify for an exclusion. We urge the Centers for Medicare & Medicaid Services (CMS) to withdraw the interim final rule as published and delay implementation of the community engagement requirements until people living with serious chronic conditions, including titin-related disorders, and their caregivers are adequately protected, as Congress intended. Please see attached for additional details.