About This Legislation:

Investigators, clinicians, and families are working to find a treatment or cure for spinal muscular atrophy (SMA). The SMA Treatment Acceleration Act supports these efforts with federal funding.

This legislation authorizes federal funding in order to:

• Upgrade and unify existing SMA clinical trials sites and establish a national clinical trials network for SMA.
• Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites.
• Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA.
• Establish a research collaborative at the National Institutes of Health to ensure cooperation across multiple institutes regarding research related to SMA.
• Enhance and provide ongoing support to the existing SMA patient registry in order to provide for expanded research on the epidemiology of SMA.
• Establish an SMA Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, serve as the principal advisor to agency heads, and conduct a study to identify barriers to the development of drugs for treating SMA and report findings and legislative recommendations to Congress.
• Require the Secretary of Health and Human Services to collaborate with the FDA and the Coordinating Committee to make recommendations for improving and expanding existing industry incentives to promote SMA drug development.
• Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the diagnosis and treatment of SMA and the provision of care to SMA patients.

Legislative Support:

The House bill was sponsored by Representative Patrick Kennedy (D-RI 1st) and had 70 cosponsors including 49 Democrats and 21 Republicans. Senator Debbie Stabenow (D-MI) sponsored the Senate bill which had 19 cosponsors including 15 Democrats, 2 Independents, and 2 Republicans.

Status:

This bill did not pass in the 110th Congress.

MDA on the Record:

Call to Action Letter from MDA to SMA Families

Letter from MDA’s President and CEO, Jerry Weinberg, to Representative Kennedy

Letter from MDA’s President and CEO, Jerry Weinberg, to Representative Cantor

Letter from MDA’s President and CEO, Jerry Weinberg, to Senator Stabenow

Letter from MDA’s President and CEO, Jerry Weinberg, to Senator Isakson

See more previous congressional legislation.