Over the past year, FightSMA has worked with our champions in the Congress, Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA), to develop legislation that will help achieve our goal of securing additional federal resources to accelerate clinical trials for spinal muscular atrophy (SMA). With the support of longtime FightSMA ally House Majority Leader Eric Cantor (R-VA), these two key members of the House Energy and Commerce Committee’s Subcommittee on Health have collaborated to craft bipartisan legislation that will advance translational research and clinical trials for a variety of rare pediatric disorders, with SMA serving as a model disease.
We are thrilled to announce that last night, Reps. McMorris Rodgers and Capps, along with Reps. Gregg Harper (R-MS), Diana DeGette (D-CO) and Peter King (R-NY), introduced the National Pediatric Research Network Act (H.R. 6163), a bill to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases that affect children. Expanding on a previous pediatric research measure by Congresswoman DeGette, the bill calls for an appropriate number of these new consortia to focus primarily on rare diseases, and specifically mentions SMA among the diseases that should be included. The bill directs NIH to support consortia that conduct multisite clinical trials of therapies for pediatric rare diseases.
FightSMA and our congressional sponsors have collaborated directly with senior health staff on the House Energy and Commerce Committee in drafting this legislation, and we will continue to work with them to ensure that the committee considers the bill in a timely manner. Meanwhile, we have already begun the process of building bipartisan support for a companion bill in the Senate, including in the all-important Senate Committee on Health, Education, Labor and Pensions (HELP). We hope to have a bill introduced in the Senate very soon and will continue to push aggressively for enactment of this important legislation in 2012.