In advance of U.S. Senate consideration of H.R. 1, Cure SMA wrote to U.S. Senate leaders to highlight the importance of Medicaid to children and adults with spinal muscular atrophy (SMA) and to share the SMA community's concerns with the proposed Medicaid cuts and changes included in the legislation. 

In the June 5, 2025 letter, Cure SMA told Senate leaders that many individuals with SMA rely on Medicaid for access to healthcare and caregiving services. The letter quoted one individual with SMA who said "Medicaid is vital to every aspect of my life." 

Cure SMA also highlighted the SMA community's significant concerns over the cuts and changes proposed in the legislation. 

• On proposed Medicaid funding cuts, Cure SMA noted that the SMA community already faces access challenges and barriers under current funding levels and that they worry about the impact less federal funding to states will have on their lives." My state is already trying to reduce caregiving hours. I’m very worried that this will be the first target if funding is reduced," said an adult with SMA quoted in Cure SMA's letter.  
• On other proposed Medicaid changes, Cure SMA noted the existing challenges the SMA community faces with Medicaid eligibility and renewals and their worry that additional administrative processes will cause further stress and problems. “The process is difficult and disorganized enough as it is currently. I absolutely have concerns” about the new compliance requirements, said an adult with SMA quoted in the letter. 

Cure SMA also shared the letter with all members of the U.S. Senate to ensure that the needs and concerns of the SMA community were heard and considered during the H.R. 1 deliberations. 

SMA community advocates interested in sharing their own perspective with their Members of Congress can do so through Cure SMA's Action Center.