11/07/01
PROMISING OUTLOOK FOR PASSAGE OF MD-CARE ACT
Jerry Lewis with Benjamin Cumbo at the Senate subcommittee hearing. |
Working closely with Congress, the National Institutes of Health and other groups, the Muscular Dystrophy Association vigorously has encouraged the federal government to focus on muscular dystrophy research and substantially increase spending for this purpose. In this regard, the Association has introduced in the House of Representatives and the Senate the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 ("MD-CARE Act") and sought to include muscular dystrophy-specific language in House and Senate Appropriations Committee reports on funding for the Department of Health and Human Services.
We’re pleased that considerable progress has been made in this effort, as the MD-CARE Act (H.R. 717 and S. 805. Document can be viewed with Adobe Acrobat.) has received overwhelming Congressional support. This groundbreaking legislation directs the NIH to intensify research into finding the causes of, and treatments and cures for, all forms of muscular dystrophy. The legislation also calls for the CDC to establish a national surveillance program for the muscular dystrophies and provides for enhanced education about the diseases for healthcare professionals and the public.
Ed McMahon greets Rep. Michael Bilirakis, chairman of the House Subcommittee
on Health, after giving testimony on the need for increased federal funding
of muscular dystrophy research. |
At the urging of MDA, on Sept. 24 the House of Representatives unanimously passed its version of the bill and, on Oct. 30, the Senate Committee on Health, Education, Labor, and Pensions approved a similar version of the bill. We’re optimistic that the Senate soon will pass the legislation and that shortly thereafter the MD-CARE Act will be sent to the President for signature and enacted into law.
MDA is also lobbying to increase muscular dystrophy research funding for the NIH. As a result of MDA’s efforts, the Senate Appropriations Committee has urged NIH "to establish no fewer than three centers of excellence for basic and applied research in the muscular dystrophies and encourages the Institute to provide sufficient funds for this purpose."
Leading the Association’s efforts in Washington have been MDA National Chairman Jerry Lewis and MDA Board member Ed McMahon. Earlier this year, they gave compelling testimony before Congress which resulted in a groundswell of support for MDA’s legislative initiatives. We’re also grateful to MDA’s other prominent lay leaders and the families we serve across the nation who’ve transmitted poignant communications to their Congressional leaders urging support of the MD-CARE Act.
For some 50 years, the Association has led the world in neuromuscular disease research. In recent years, MDA-funded scientists have explored gene therapy and other techniques that could halt or reverse the progressive muscle destruction in muscular dystrophy and related diseases.
Due to the tremendous expense of clinical trials for such advanced, high-tech methods, however, federal support is desperately needed. MDA estimates that the cost of a gene therapy trial for a single disease-causing flaw could be $20 million. Some of the nine forms of MD can result from any of several genetic defects.
MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. |
