107th Congress

Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001

P.L. 107-84 (H.R. 717/S. 805)

Impact of Public Law

Public Law (P.L.) 107-84 amends Part A of Title IV of the Public Health Service Act (42 U.S.C. 281 et seq.) to include the following:

• Mandate that the Director of the National Institutes of Health (NIH), in coordination with the Directors of the National Institute of Neurological Disorders and Stroke, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Institute of Child Health and Human Development, and other national research institutes, as appropriate, expand and intensify programs with respect to research and related activities concerning Duchenne, myotonic, facioscapulohumeral, and other forms of muscular dystrophy (MD)
• Require the establishment of MD Centers of Excellence
• Require the Secretary of Health and Human Services (HHS) to contract with the Institute of Medicine to study centers at NIH and make recommendations when their establishment is appropriate
• Create an MD Interagency Coordinating Committee that is required to 1) develop a plan for conducting and supporting research and education on MD through the national research institutes and 2) submit a biennial report to Congress describing research activities
• Establish a program in which samples of tissues and genetic materials that are of use in research on MD are donated, collected, preserved, and made available for such research
• Require the Secretary of HHS to provide a means of public input on existing and planned MD research activities
• Require the Centers for Disease Control and Prevention to carry out activities with respect to Duchenne MD epidemiology.

Legislative History

H.R. 717—Duchenne Muscular Dystrophy Childhood Assistance, Research and Education Amendments of 2001 (a.k.a. DMD CARE Act)

On February 14, 2001, Representative Roger Wicker (R-MS) introduced H.R. 717, the Duchenne Muscular Dystrophy Childhood Assistance, Research and Education Amendments of 2001, or the DMD CARE Act. Upon introduction, this legislation was referred to the House Committee on Energy and Commerce.

On February 27, the Senate Appropriations Subcommittee on Labor, HHS, Education held a hearing on MD. The purpose of the hearing was to discuss the level of NIH funding, the seriousness and impact of the MDs, and the next steps research should pursue. During the hearing, MD research advocates testified that H.R. 717 would resolve outstanding questions about the prevalence of MD. In addition, the research centers that the bill would direct NIH to establish would allow support for environments in which a critical mass of research capacity could be brought to bear on the disease.

On July 11, 2001, the House Energy and Commerce Subcommittee on Health held a markup on H.R. 717, amended the measure, and ordered H.R. 717 reported to the full Committee. As a result, H.R. 717 was cited as the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, or the MD-CARE Act. On July 19, the full House Committee on Energy and Commerce ordered the amended version of H.R. 717 reported out of Committee. On September 5, the full House Committee ordered H.R. 717 reported. H.R. 717 passed the full House Under Suspension of the Rules on September 24 and was received in the Senate the next day. H.R. 717 was referred to the Senate Committee on Health, Education, Labor, and Pensions. On October 16, the Senate Committee ordered H.R. 717 reported with an amendment in the nature of a substitute. On October 30, H.R. 717 was reported by the full Senate Committee and placed on the Senate Calendar for consideration. On November 15, the Senate passed H.R. 717 as amended. The President signed the measure on December 18, 2001.

S. 805—Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (a.k.a. MD-CARE Act)

On May 1, 2001, Senator Paul Wellstone (D-MN) introduced S. 805, the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, or the MD-CARE Act, which is similar to H.R. 717.

Provisions of S. 805 are identical to those of H.R. 717, with one distinct difference. The difference is that S. 805 mandates that NIH establish not less than five Centers of Excellence, whereas H.R. 717 does not designate a specific number of centers to be supported. Upon introduction, S. 805 was referred to the Senate Committee on Health, Education, Labor, and Pensions. There was no further action on this legislation.