9/24/01
House Passes MD-CARE Act
TUCSON, Ariz., Sept. 24, 2001 - In a 383-0 vote today, the U.S. House of Representatives passed the landmark MD-CARE Act, H.R. 717.
The breakthrough measure -- strongly supported by the Muscular Dystrophy Association -- paves the way for a significant boost in federal funding of muscular dystrophy research aimed at potential high-tech treatments.
"We're deeply grateful for the unanimous passage of this vital legislation," MDA President Robert Ross said. "We're elated to have such overwhelming support from members of Congress for a bill that could eventually help win MDA's fight against muscular dystrophy."
The MD-CARE (Muscular Dystrophy Community Assistance, Research and Education) Act represents the first time in its 50-year history that MDA has advocated government funding of research. The House bill, H.R. 717, and its Senate counterpart of the same name, S. 805, would expand the National Institutes of Health's existing research effort covering the nine forms of muscular dystrophy.
Programs outlined in the measures include additional basic and clinical research into causes of, and potential treatments for, the muscular dystrophies. The legislation also provides for early detection and intervention for people with MD and increased education about the diseases for health-care professionals and the public.
While the approved House bill requests the financial support needed to carry out those programs, the actual allocation of funds would come from a line-item addition to a separate appropriations bill. Neither version of the MD-CARE Act names a dollar amount, but MDA has proposed that Congress provide an additional $100 million to NIH annually for muscular dystrophy research.
The Senate bill currently has 47 co-sponsors.
"It's absolutely essential that S. 805 also be approved. The Association urges all those concerned with conquering muscular dystrophy to contact their senators as soon as possible on behalf of this bill," Ross said.
Leading the Association's efforts in support of the MD-CARE Act have been two prominent celebrity volunteers, MDA National Chairman Jerry Lewis and Board member Ed McMahon. Earlier this year, the two represented MDA before different Congressional subcommittees.
Shortly after Lewis' testimony to a Senate subcommittee, S. 805 was introduced. Just after McMahon spoke before a House subcommittee, H.R. 717 was amended to include provisions for all forms of muscular dystrophy.
Lewis, McMahon and other MDA representatives told the committees that, for some 50 years, the Association has led the world in neuromuscular disease research. In recent years, MDA-funded scientists have developed gene therapy and other techniques that could halt or reverse the progressive muscle destruction in muscular dystrophy and related diseases.
But the expense of clinical trials of such advanced, high-tech methods is beyond MDA's means, Lewis explained, and federal support is needed. The cost of a trial of one genetic fix for a single disease-causing flaw could be $20 million, MDA estimates. 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. | 
