Mr. Lewis Goes to Washington

'Today, we need help,' Lewis tells Senate committee

by Tara Wood on May 31, 2001 - 5:00pm

MDA National Chairman Jerry Lewis laughs at a remark made by Benjamin Cumbo during a hearing before the U.S. Senate Subcommittee on Labor, Health and Human Services, Education and Related Agencies. Cumbo was MDA's National Goodwill Ambassador in 1996 and 1997.

On a historic February day for MDA, Jerry Lewis testified to a Senate subcommittee that, after 50 years of fighting muscular dystrophy, he feels it's time for the government to step up its role in the battle.

Lewis, MDA's national chairman, urged an increase of $100 million in annual federal funding for muscular dystrophy research when he and a team of MDA representatives spoke on Feb. 27 to the Labor, Health and Human Services, Education and Related Agencies Subcommittee of the Senate Appropriations Committee.

It was Lewis' first-ever appearance before Congress, and the hearing drew some 400 to 500 people, the largest crowd ever to attend a disease-specific hearing in the nation's capital.

Lewis and MDA representatives told senators that a significant increase is needed in National Institutes of Health funding devoted to research into nine forms of muscular dystrophy. The current annual budgeted amount is $19.9 million for muscular dystrophy.

He reminded committee members that MDA has laid the groundwork for testing potential treatments by locating the genetic causes of almost every form of muscular dystrophy. But now, much more money is needed to get to the next level in muscular dystrophy research, he said, and to speed up the clinical trials process of testing weapons like gene therapy and promising drug treatments.

Following the testimony, Jerry Lewis and Sen. Arlen Specter, R-Pa., the subcommittee chairman, posed for photos.

"The clinical trials that we need to conduct to test the things that we think could stop muscular dystrophy are incredibly expensive. Without government support, many trials will never happen and those that do will take much longer," Lewis said. "This is unacceptable. I cannot tell a quarter million Americans that they are not a national priority."

Lewis urged that millions in NIH funds be granted, not to MDA, but directly to researchers. He stressed MDA's history of success in pioneering research toward treatments and cures for muscle-wasting diseases.

"Virtually every major discovery on this disease was funded by MDA. We've located the genetic defects for almost every form, we've tested countless drugs and compounds looking for the answer, we've developed techniques that are being used in the battles against scores of other diseases," Lewis said.

While Lewis was obviously the featured speaker of the hearing, it was 13-year-old Benjamin Cumbo who briefly stole the spotlight and brought the crowd to its feet with his own question for senators.

Benjamin, of Upper Marlboro, Md., was accompanied by his parents, Benjamin and Deborah. Lewis showed the panel a video profile of Benjamin, who has Duchenne muscular dystrophy and who served as MDA's National Goodwill Ambassador in 1996 and 1997.

Leon Charash (left), MDA Board member and chairman of MDA's Medical Advisory Committee, described the Association's research accomplishments to the Senate subcommittee. Also testifying were MDA grantee H. Lee Sweeney of the University of Pennsylvania and Audrey S. Penn (right) of the National Institute of Neurological Disorders and Stroke. Penn is a member of MDA's Medical Advisory Committee.

Subcommittee Chairman Sen. Arlen Specter, R-Pa., asked how he was doing, and Benjamin responded that he was doing fine and "just trying to find a girlfriend," listening to hip-hop music and "everything that a teen-age boy would regularly do."

Then Benjamin, who follows military aviation as a hobby, asked, "If you can spend $2 billion on a single plane, don't you think you can spend $100 million on muscular dystrophy?" The question drew a roar of applause, brought many audience members to their feet and drew smiles from senators.

"Ben, have you considered being a senator?" asked Specter with a chuckle.

Benjamin responded that he was considering a career as a military pilot, and then Specter said, "We'd better reserve one of those $2 billion planes for you."

Also testifying on behalf of MDA were Leon I. Charash, chairman of the MDA Medical Advisory Committee, and Chris Rosa, a member of MDA's National Task Force on Public Awareness. Both men are members of MDA's Board of Directors.

Charash, a pediatric neurologist from Woodbury, N.Y., told the panel that there's a great disparity in NIH spending when other diseases are compared to the muscular dystrophies, which affect some 250,000 American children and adults.

"In fact, spending on some of these disorders, and even on some that affect far fewer people, is many times the amount allocated for muscular dystrophy research," said Charash, who also proposed an NIH study group be established for neuromuscular disease research.

Rosa, who is affected by Becker muscular dystrophy, told the panel how MDA had helped him achieve success in his life, and why working toward treatments and cures is essential.

MDA Board member Chris Rosa (left) and Donavon Decker, who received experimental gene therapy in MDA's 1999 trial, testified about the importance of muscular dystrophy research, and how the disease affects their lives.

"Indeed, thanks to MDA, I was able to graduate from college, go on to graduate school, earn a doctorate in sociology, build a rewarding career and dream of starting a family of my own," said Rosa, director of the Office of Special Services for Students with Disabilities at Queens College of the City University of New York. "Moreover, through MDA's worldwide program of neuromuscular disease research, we have moved to the very threshold of treatments and cures.

"While this progress is a source of tremendous hope for families affected by muscular dystrophy, it is also a source of great tragic irony. As those of us who have been empowered to pursue independence by research wait desperately for effective treatments and cures, the ravages of muscular dystrophy continue to exact tremendous human and social costs," Rosa said.

Also testifying at the hearing was Donavon Decker of Huron, S.D., who in 1999 received the first gene therapy injection ever given a person with muscular dystrophy. Decker, an air traffic controller, has limb-girdle muscular dystrophy as do several of his siblings.

Decker told the panel that the meager amount of federal money budgeted for muscular dystrophy research is "very disappointing to myself and my family.

"I am certain that many other families living with muscular dystrophy share my disappointment. But this can change. We can only win the battle much quicker with your help," Decker testified.

Some speakers at the hearing, including subcommittee members, praised Lewis for leading MDA to the height of success over the years.

Specter and Sen. Larry Craig, R-Idaho, praised Lewis for his accomplishments in the last 50 years, and for all he has done for the country.

Audrey S. Penn, M.D., deputy director of NIH's National Institute of Neurological Disorders and Stroke, recognized MDA for its "tireless efforts over the years under the leadership of Lewis." Penn is a member of MDA's Medical Advisory Committee.

At a press conference following the hearing, Lewis described the event as "absolute proof that this is the best country in the world. For a pratfall comedian to come before the Senate and ask for your help is an extraordinary thing."

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