Cure SMA completed a year-long advocacy effort to educate public and private insurers about the current state of spinal muscular atrophy (SMA), including the unmet needs of individuals with SMA and barriers they face in accessing essential healthcare and treatments.
Patient and clinical-reported data have chronicled how SMA is rapidly changing due to the availability of disease-modifying treatments and newborn screening in all 50 states. As reported within the 2024 State of SMA report, the mortality rate in SMA has dropped nearly 80 percent in the last decade, and current treatments are improving the lives of children and adults with SMA. However, the report also illustrates that significant unmet needs and insurance barriers remain in the SMA community.
Cure SMA shared key SMA community data and experiences with insurers in two significant educational outreach campaigns to better inform them about the promising trends and the evolving needs and goals of the SMA community.
- Following the 2024 SMA Conference, Cure SMA shared its State of SMA report and a summary of its key findings with all 50 state Medicaid agencies and numerous national and regional private insurers.
- In advance of the 2025 SMA Conference, Cure SMA updated insurers on the current state of SMA and highlighted SMA community experiences through more than 30 quotes from adults with SMA, teenagers with SMA, and parents of children and adults with SMA.
SMA community members can view the educational outreach letters on Cure SMA’s Insurance Resources web page, which also features checklists and other resources to help individuals and families with SMA manage insurance related to SMA care, including recommendations for navigating the process of appealing insurance denials. For more information about Cure SMA and its efforts to promote access to healthcare, contact [email protected].
Funding for this initiative was provided by the 2025 Cure SMA Industry Collaboration.
About the Cure SMA Industry Collaboration
The Cure SMA Industry Collaboration (SMA-IC) was established in 2016 to leverage the experience, expertise, and resources of pharmaceutical and biotechnology companies, as well as other nonprofit organizations involved in the development of spinal muscular atrophy (SMA) therapeutics, to more effectively address a range of scientific, clinical, and regulatory challenges.
Current members include Cure SMA, Biogen, Novartis, Scholar Rock, Genentech/Roche Pharmaceuticals, NMD Pharma, and SMA Europe.