On July 27th, the U.S. Senate Appropriations Committee supported a Cure SMA-requested provision asking the National Institutes of Health (NIH) to address the unmet needs of individuals with spinal muscular atrophy (SMA) through new SMA research.
The provision, which can be found on pages 132 & 133 of the fiscal year 2024 Labor-Health and Human Services, Education and Related Agencies report, highlighted Congress’ understanding of SMA and its commitment to meeting the needs of the SMA community. The U.S. Senate Appropriations Committee noted that “individuals with SMA, particularly adults, face significant challenges in muscle weakness and fatigue due to degeneration that occurred prior to treatment.” The committee report went on to urge NIH “to address significant unmet need that exists across all ages and disease stages of SMA by supporting new SMA research.”
“Over the past two years, Cure SMA and the SMA community have been actively educating Congress and other stakeholders about the continued needs of individuals with SMA, especially adults and older children who were unable to access an SMA treatment before symptoms,” said Kenneth Hobby, President, Cure SMA. “The inclusion of this important provision in next year’s NIH funding bill represents a community-wide victory. Now our efforts will focus on ensuring the provision remains in the final bill.”
In addition to its advocacy efforts in Congress, Cure SMA has also been active in educating other key stakeholders, including the U.S. Food and Drug Administration (FDA), and NIH, about the need for continued SMA research and new SMA treatments to address unmet needs. In August 2022, Cure SMA arranged a listening session with FDA where six members of the SMA community shared their SMA experiences and their unmet medical needs. In May 2023, Cure SMA attended and provided testimony at the National Advisory Neurological Disorders and Stroke Council meeting to also highlight the needs of the SMA community.
Individuals with SMA and their families who are interested in ensuring the SMA NIH research language is included in the final NIH funding bill can reach out to their Members of Congress through the Cure SMA Advocacy Action Center.