Washington Report
McMahon Takes Muscular Dystrophy Funding Case to House
Popular television personality Ed McMahon joined the front lines of MDA's effort
to persuade the federal government to increase its funding of research to speed
the search for cures for muscular dystrophy. McMahon, a member of MDA's Board
of Directors and longtime anchor of the Jerry Lewis MDA Telethon, represented
MDA before a congressional subcommittee in June.
TO HELP PASS
THE MD-CARE ACT...
Visit MDA's Web site, www.mda.org/whatsnew,
to stay informed about the latest news on both the House and Senate versions of
the MD-CARE Act, H.R. 717 and S. 805. Co-sponsors of the two bills are listed
on the Web site.
MDA urges friends of the Association to thank current co-sponsors and to request
co-sponsorship from legislators who haven't yet endorsed the bill. Co-sponsors
are especially needed in the Senate.
As of press time, the Senate bill had only 34 co-sponsors in the 100-member
Senate. The more sponsors the bill has, the better its chances of coming before
the Senate for a vote.
The House bill has much broader support, with 310 co-sponsors by late July. The
bill must pass both houses of Congress before it can become law.
Members of the 107th Congress can be contacted by telephone, fax or e-mail. To
locate that information about your U.S. representatives or senators, check your
local telephone directory or look online at www.senate.gov and www.house.gov. |
And shortly after his testimony, a House bill was amended to set the stage for a
boost in federal support of research into all forms of muscular dystrophy.
"I usually go someplace to give away money, but today I'm here to ask for money.
It's a different role for me," McMahon told members of Congress, referring to
his role as spokesman for American Family Publishers sweepstakes.
Ed McMahon greets Rep. Michael Bilirakis,
chairman of the House Subcommittee on Health, as House Counsel Marc Wheat looks
on. |
Speaking before the Subcommittee on Health of the House Energy and Commerce
Committee, he pleaded for support of MDA's request that the National Institutes
of Health allocate an additional $100 million annually to help take muscular
dystrophy research to the next level — costly trials of high-tech potential
treatments.
"Over the years, I've had the opportunity to meet and get to know many wonderful
children and adults with MD. Unfortunately, many of them are not with us today.
And that's why I am here today," McMahon told the committee.
McMahon's testimony followed a February appearance by MDA National Chairman
Jerry Lewis before a Senate subcommittee urging the federal government to
become more aggressively involved in muscular dystrophy research. MDA proposes
that NIH award more funding directly to researchers, not to the Association.
After Lewis' testimony, Sens. Paul Wellstone, D-Minn., Thad Cochran, R-Miss.,
Susan Collins, R-Maine, and 18 other senators introduced the MD-CARE Act of
2001. The measure, S. 805, represents a first step toward enhancing NIH focus
on muscular dystrophy research.
The House version of the MD-CARE Act, H.R. 717, is sponsored by Rep. Michael
Bilirakis, R-Fla. MDA endorses both bills and urges readers to support them.
In his testimony, McMahon explained the need for more federal support of MD
research.
"Until recently, MDA managed to fund all the research into muscular dystrophy
that was scientifically justified," he said. But the next step in research is
clinical trials involving such cutting-edge techniques as gene therapy and stem
cell therapy.
"The cost of a clinical trial to test one genetic fix for one particular
disease-causing flaw is $20 million," McMahon said.
The nine muscular dystrophies, many of which can result from any of several
different genetic defects, could require dozens of separate trials. Although
such trials may be scientifically feasible soon, the costs would be beyond
MDA's capacity, he added.
"The MD-CARE Act has tremendous potential to assist in the development of
lifesaving high-tech treatments for the devastating diseases collectively known
as muscular dystrophy," said MDA President Robert Ross.  |
