Washington Report

MDA Supports New Research Law

New legislation representing a giant step toward a significant boost in federal funding for muscular dystrophy research was introduced in Congress May 1.

The Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, S. 805, was introduced in the 107th Congress by Sen. Paul Wellstone, D-Minn., who co-sponsored the measure along with Thad Cochran, R-Miss., Susan Collins, R-Maine, and more than a dozen others.

The law, also known as the MD-CARE Act, would expand existing research programs of the National Institutes of Health, resulting in more federally supported research into the nine forms of muscular dystrophy. It would also establish and fund at least five NIH "centers of excellence" to specialize in different areas of muscular dystrophy research, both basic and clinical.

"This legislation is urgently needed to help make potential high-tech treatments for muscular dystrophy a reality," MDA Senior Vice President and Executive Director Robert Ross said.

MDA National Chairman Jerry Lewis, who testified before a Senate subcommittee in February about the need for greater federal expenditure on MD research, said the new bill would "lay the groundwork for Congress to authorize much-needed funding for muscular dystrophy research.

Jerry Lewis asks Congress to earmark more funds for muscular dystrophy research.

"In the past 50 years, MDA scientists have made tremendous progress in the search for causes of and cures for muscular dystrophy. We hope Congress will help to take us the rest of the way to eliminating the destructive and often fatal consequences of these diseases," Lewis said.

The bill would also promote education and information on MD for the public and for health professionals. Another provision would direct the Centers for Disease Control to conduct a National Muscular Dystrophy Surveillance Program to gather more accurate data such as numbers of cases of each type of MD. A significant element of the measure authorizes the funding necessary to carry out its provisions.

Lewis said, "The MD-CARE Act has the potential to help hundreds of thousands of children and adults with muscular dystrophy and related diseases, even to save lives. I encourage all caring Americans to ask their senators to co-sponsor or vote for this bill."

Since Lewis' testimony, the NIH has created a Muscle Biology Study Section as a first step toward more federal involvement in MD research.

During the Washington visit, MDA leaders addressed a subcommittee of the Senate Appropriations Committee, requesting an aditional $100 million for research into muscular dystrophy each year. They requested that federal funds be allocated directly to scientists on the cutting edge of MD research, not funneled through MDA.

In addition to Lewis, speakers included MDA Board members Leon I. Charash, chairman of the Association's Medical Advisory Committee, and Chris Rosa of the MDA National Task Force on Public Awareness. Former National Goodwill Ambassador Benjamin Cumbo of Upper Marlboro, Md., also spoke.

Since their testimony, MDA has worked closely with the NIH to develop legislation, of which the MD-CARE Act is the first result.

With some two dozen initial co-sponsors, the MD-CARE Act is off to an encouraging start. To win Senate approval, the measure requires 51 votes.

A similar bill is expected to move through the House of Representatives. 

FOR MORE INFORMATION, AND TO HELP
PASS THE MD-CARE ACT . . .

Keep up with the latest information on S. 805 by visiting MDA's Web site, www.mda.org/whatsnew. The site will list the measure's co-sponsors, who National Chairman Jerry Lewis says deserve thanks for supporting the bill.

You can write, fax, phone or e-mail other senators to urge them to co-sponsor or vote for the bill. To locate the names and contact information for your state's Senators, check your local telephone directory or visit www.senate.gov.