CONGRESSWOMAN ELISE STEFANIK
On Monday, July 28, 2014, the House will consider H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014, under a suspension of the rules. H.R. 594 was introduced on February 8, 2013 by Rep. Michael Burgess (R-TX) and referred to the Committee on Energy and Commerce, which ordered the bill reported, as amended, by voice vote.
H.R. 594 amends the Public Health Service Act to make a number of revisions to the muscular dystrophy research program at the National Institutes of Health (NIH), such as including other forms of muscular dystrophy in the program; requiring research conducted through the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers to include cardiac and pulmonary function research; and requiring the Director of NIH to ensure the sharing of data and regular communication between centers. This legislation also revises the composition of the Muscular Dystrophy Coordinating Committee (MDCC) to include the United States Administration for Community Living and the Social Security Administration and requires the MDCC to meet at least biannually. Moreover, it requires the MDCC, through the agencies represented in the Coordinating Committee, to: 1) provide for studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy; 2) conduct studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy; and 3) include studies of the impact of these diseases in rural and underserved communities.
H.R. 594 also amends the Public Health Service Act to require, when possible, that surveillance and research regarding muscular dystrophy be representative of all affected populations and shared in a timely manner. This legislation also amends the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to: 1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, adult patients, and acute care considerations for all muscular dystrophy populations; and 2) that direct such care considerations incorporate strategies specifically responding to the findings of the national transitions survey of minority, young adult, and adult communities of muscular dystrophy patients.
Muscular Dystrophy refers to “a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscle that control movement.” The Muscular Dystrophy Coordinating Committee (MDCC) was established to coordinate activities across the NIH and other Federal health programs for all activities relevant to muscular dystrophy. Including within the MDCC is the Wellstone Muscular Dystrophy Research Network, established by the NIH in 2003 after the late Senator Paul D. Wellstone (D-MN). The Wellstone Centers are supported by five-year, renewable grants, and are involved in several translational and clinical research programs for various forms of muscular dystrophy.
CBO estimates that implementing this legislation would cost $323 million over the 2015-2019 period, assuming appropriation of the necessary amounts. This is consistent with current appropriations.
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