6/27/01
Testimony of Ed McMahon, National Vice President
Muscular Dystrophy Association
Before the Health Subcommittee
of the House Committee on Energy and Commerce
Thank you Mr. Chairman and members of the Subcommittee. It's an honor to represent the Muscular Dystrophy Association and the 250,000 Americans affected by muscular dystrophy.
As you're aware, during my lengthy career in show business, besides hosting my own shows and spending a few years helping out some guy named Johnny, I've been a pitchman. Beer, dog food, insurance, magazines - you name it, I've helped sell it. Well, I'm here today to make a pitch to you. I don't want to sell you any products, but I do want you to buy something. What I'm selling is a dream - one you can make come true.
Obviously, I'm not trained as a physician or a researcher. I've got a pretty good layman's understanding of the nine forms of muscular dystrophy and where the research into finding treatments and cures is at the moment, but I don't pretend to be an expert. That's why I've got Dr. Sharon Hesterlee, MDA's director of research development, here with me to handle any technical questions you might have. However, after spending more than 30 years serving as anchor of MDA's Labor Day Telethon with Jerry Lewis and doing my best to help the Association in any other ways I could, I do consider myself an expert on the human side of muscular dystrophy. 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, and that's why I hope you're going to buy what I'm selling.
For more than 50 years, MDA has been funding the top scientists in the world in an effort to find out what causes muscular dystrophy and how we can stop it. With the dramatic advances made in the past 25 years in cellular biology, we've been able to locate the genetic causes of almost all the forms of muscular dystrophy. In just the past few years, MDA-funded scientists have developed techniques that will allow us to attempt to fix the genetic flaws that underlie muscular dystrophy by inserting new genes into the human body. These heroes of modern science are poised to test gene therapy for several forms of the disorder. The only thing that can slow our relentless advance toward treatments and cures is money. Until recently, MDA managed to fund all the research into muscular dystrophy that was scientifically justified. That's no longer the case.
The problem is that some forms of muscular dystrophy can result from a variety of different genetic mutations. Each mutation may require its own specific form of gene therapy. The cost of a clinical trial to test one genetic fix for one particular disease-causing flaw is $20 million. When you consider that there are nine forms of muscular dystrophy and that some of those nine forms can result from any of several different defects, it's easy to see why money is a major roadblock to testing this potential treatment. Despite the incredible generosity the American people show for MDA each year, there's no way a nonprofit organization like ours can possibly afford to fund this vital research. For the first time in the history of the Muscular Dystrophy Association, we're asking the federal government to help in this fight. We don't ask for a penny for ourselves, but for an annual increase of $100 million in National Institutes of Health funding for muscular dystrophy research - money that will be distributed directly to the researchers trying to make treatments and cures for these devastating disorders a reality.
I've never tried to sell anything that cost $100 million before, but I've never had a product that I believed in as much as I do this one. Treatments and cures for muscular dystrophy would be a bargain at many times this price. We're talking about diseases that rob people of the ability to walk, to dress themselves, to feed themselves, eventually, even to breathe. We have to ask ourselves, how much is a human life worth? How much are tens of thousands of lives worth? Can you place a value on the smile on a mother's face when she sees her child walk for the first time at 10 years old? Or set a price on the pride a father feels at walking his daughter down the aisle on her wedding day because he was able to beat a disease that tried to steal his life? No product ever sold can offer so many benefits of such great value.
What do I get out of making this sale? I get some sense of peace from knowing that I've played a small part in fulfilling the promise that all of us at MDA made long ago - that we wouldn't quit until treatments and cures for muscular dystrophy are a reality. Each time I'm reminded of a special friend lost to this terrible disease - and believe me, after this many years it happens often - I can whisper, it wasn't in vain, my friend. You helped us get here. You helped us make the dream come true.
When legislation calling for increased NIH funding for muscular dystrophy research comes before you, I hope that you'll remember the quarter of a million Americans waiting for a miracle, and that you'll decide to make a difference, to save lives, to make this dream come true.
Thank you from all of us who still believe in miracles.
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