On March 27, U.S. Health and Human Services Secretary Robert F. Kennedy, Jr. announced plans to restructure agencies and activities within the U.S. Department of Health and Human Services (HHS), which includes the National Institutes of Health (NIH), Centers for Medicare and Medicaid Services (CMS), and the U.S. Food and Drug Administration (FDA). 

HHS and its agencies have played a key role in helping to meet the needs of individuals with spinal muscular atrophy (SMA) and their families. 

• Past research supported by the NIH has led to current SMA treatment breakthroughs.
• CMS oversees Medicaid, an essential program that provides healthcare and caregiving services for many individuals with SMA.
• The FDA is the regulatory body that approved the existing SMA treatments and is currently reviewing other potential SMA treatments.
• In addition, HHS's Advisory Committee on Heritable Disorders in Newborns and Children recommended in 2018 that SMA be added to state newborn screening programs, a goal that was achieved in 2024 when all 50 states implemented newborn screening of SMA.

Given HHS’s past and current work on behalf of the SMA community, Cure SMA will view restructuring plans and implementation through the lens of whether those changes slow, stop, or otherwise negatively impact the ability of individuals with SMA and their families to access the care, services, and supports they need to maintain their health, independence, and community living.