Thanks to the advocacy of individuals with spinal muscular atrophy (SMA), a key SMA community recommendation to increase information about state caregiving options won the approval of a powerful Congressional committee. The U.S. House Energy and Commerce Committee voted 41-0 on September 18 to advance the Think Differently Database Act (H.R. 670), bipartisan legislation supported by Cure SMA to create a one-stop online clearinghouse of information about caregiving options available in all 50 states.
According to Cure SMA’s 2024 Stuck Inside report, 47 percent of all individuals with SMA and their families struggled to find information about paid caregiving options in their state. “State services are extremely convoluted and difficult to find answers,” said an adult with SMA. Another adult with SMA said, “I couldn’t find information directly online about the waiver program that I use.” Cure SMA surveyed state web pages and found that online information about state caregiving services was hard-to-find, confusing, inconsistent, and not consumer-oriented.
The SMA community recommended that state caregiving information be made available to consumers on an interactive, plain language online web page. H.R. 670 would accomplish this SMA community goal by requiring the U.S. Department of Health and Human Services to establish and periodically update a website with eligibility requirements, wait list times, and other information about caregiving services available through Medicaid waiver, buy-in, and other state programs.
Earlier this month, Cure SMA organized a coalition effort in Washington, DC that led to more than 20 other national disability organizations supporting this SMA community caregiving goal. With committee passage, Cure SMA is now working with Congressional leaders, including the sponsors of the companion bill in the U.S. Senate, to secure the legislation’s final approval before the end of 2024. Cure SMA is also working to grow support for other proposals to address other caregiving challenges outlined in Cure SMA’s caregiving report.
Other Cure SMA Supported Legislation:
In addition to the caregiving bill, the U.S. House Energy and Commerce Committee also approved another SMA community priority, the extension of the Rare Pediatric Priority Review Voucher (PRV) Program. The PRV program helps to incentivize the development of treatments for rare disease. All three FDA-approved SMA treatments qualified for this incentive through the PRV program. The program is set to expire at the end of September. The PRV provision included in the committee-approved Give Kids a Chance Act (H.R. 3433) proposes to extend PRV through 2030.
Within the last 10 days, SMA community advocates from across the country sent more than 680 direct messages to Members of Congress in support of SMA community priorities, including the legislation to create the caregiving web page and extend the PRV program. Advocates connected with their Members of Congress through Cure SMA’s Advocacy Action Center, which was made available through funds from Genentech and Biogen.