On January 4th, 2025, President Biden signed the Think Differently Database Act (H.R. 670) into law, marking a significant legislative victory for the SMA community. This law will create an interactive, searchable webpage providing federal, state, and local information about caregiving services, including Medicaid Home and Community-Based Services (HCBS) eligibility, to individuals with disabilities and their families.
The Story Behind the SMA Community’s Legislative Caregiving Win
The approval of the Think Differently Database Act represents the culmination of a year-long advocacy effort led by Cure SMA and the SMA community.
At the request of Cure SMA’s Adult Advisory Council, Cure SMA launched a comprehensive survey in December 2023 to understand the caregiving needs and challenges of individuals with SMA and their families. In February 2024, Cure SMA released the findings of that survey in Stuck Inside: A National Report on Caregiving for Individuals with Spinal Muscular Atrophy. The report highlighted the caregiving needs of children and adults with SMA (100+ hours a week on average) and their struggles in finding and retaining qualified caregivers. One of the report’s surprising findings was that nearly half (47%) of all individuals with SMA and their families struggled to even understand what caregiving options were available to them in their states.
In the spring of 2024, Cure SMA shared the report with Congress and organized a series of meetings with key congressional offices. During one such meeting, Cure SMA learned of a newly introduced bill aimed at providing caregiving information for individuals with intellectual disabilities. Cure SMA reached out to the bill’s sponsors to request an expansion of the legislation to include caregiving information for all individuals with disabilities. The sponsors agreed and, on May 16, 2024, a U.S. House Subcommittee approved the expanded caregiving bill to ensure the caregiving information was relevant for individuals with SMA.
With momentum building, Cure SMA mobilized the entire SMA community through its Advocacy Action Center, encouraging individuals with SMA and their families to ask their Members of Congress to support the legislation. Together, Cure SMA and the SMA community reached every single Member of Congress to educate them about caregiving needs and how the expanded caregiving legislation could help address their challenge in finding information about care options. In addition, Cure SMA organized a coalition of support for the legislation from other national disability organizations.
On December 17, 2024, the U.S. House unanimously approved H.R. 670 to address the caregiving needs of individuals with SMA and other disabilities. On December 20, 2024, the U.S. Senate also unanimously approved the legislation, sending the bipartisan bill to the President’s desk for his signature.
A Community Effort and a Bipartisan Success
Final action on this important legislation would not have been possible without the support of President Joe Biden and the lead congressional sponsors, including U.S. Representative Marc Molinaro, U.S. Representative Mikie Sherrill, and U.S. Representative Ann Kuster in the U.S. House of Representatives and U.S. Senator Eric Schmitt and U.S. Senator Jon Ossoff in the U.S. Senate. Cure SMA especially wants to acknowledge SMA community members for sharing their experiences and advocating for improvements related to caregiving through Cure SMA’s action center, available through support from Genentech and Biogen.
This victory is a testament to the power of advocacy and collaboration. Cure SMA will continue to educate and advocate to address the other caregiving challenges identified in the SMA community national report. Together, we are making meaningful progress toward improving the lives of individuals with SMA and their families.