Wednesday, February 20, 2008

Jerry Lewis & The Telethon take a hit

We’ve supported Jerry Lewis and his Muscular Dystrophy Association since the Sixties, when we were kids putting on MDA fundraising carnivals in the driveway. And we’ve gotten older, and watched Jerry get older, every year, singing the same old song and expressing the same old hope that muscular dystrophy will one day be beaten.

So the article in today’s New York Times is a splash of cold water on the tears. Fittingly in the Business section, “Lacking Cure, a New Tack on a Muscle Disease” is more disheartening than any of the false claims that Jerry was taking money from the MDA, and far more controversial than the chapter in the book Tabloid Baby about what goes on behind the scenes at the Telethon.

The report concludes that corrupt, greedy drug companies, shortsighted doctors, the MDA's lack of direct oversight of the 225 clinics it funds, and the fact that the clinics don't share research, mean that a “cure” of the most prevalent dystrophic disease could be generations away— long after Jerry is dead. After we’re dead. And after many future Jerry's Kids are dead.

Some “highlights”:

“…For all the money collected toward a cure, Duchenne muscular dystrophy, the most common form of the disease, still confines thousands of boys in this country to wheelchairs in their early teens. Many do not live past their 20s.

"It is a stark reminder of how American medicine — with its focus on breakthrough treatments — can sometimes fail a complex, rare and stubbornly uncurable disease. Single-minded in their pursuit of a cure, doctors and researchers for years all but ignored the necessary and unglamorous work of managing Duchenne (pronounced doo-SHEN) as a chronic condition…

"'We’re in a stone age with Duchenne,' said Dr. Linda H. Cripe, a pediatric cardiologist at the Cincinnati Children’s Hospital Medical Center. She describes Duchenne patients as 'a group of kids that pediatric medicine had forgotten, a group of lost boys.'

"…The lack of interest in the mundane has also slowed progress in knowing what available therapies are the most useful. Large pharmaceutical companies often ignore a rare disease like Duchenne, and they are unwilling to undertake further research into treatments like steroids, where any benefits they show are shared by other manufacturers.

“'The economics aren’t there,' said Charles Farkas, head of the health care practice in the Americas for Bain & Company.

“'For too long, I was stuck on it as the home run or nothing,' said H. Lee Sweeney, a professor and medical researcher at the University of Pennsylvania School of Medicine, who is among the researchers now taking a different approach. 'The home run may skip the next two generations of these kids,' he said.

"...The Muscular Dystrophy Association, which raises tens of millions each year through Jerry Lewis’s telethon and other efforts, has also been criticized for a lack of focus on the specific needs of patients with Duchenne.

"The organization finances some 225 clinics across the country, including the one at Children’s Hospital of Philadelphia... The association has no direct oversight of the clinics, some of which may have little experience in treating a patient with Duchenne.

"Dr. Valerie A. Cwik, the association’s medical director, says the group is now working to create a formal research network to gather and share information about Duchenne..."


Anonymous said...

Bravo to you for your story today regarding Duchenne's Muscular Dystrophy!!! It's so good to hear that the word is being spread about this horrible disease. My 24 year old nephew suffers from DMD. He's been in the hospital for the past 3 weeks because of fluid in his lungs. I don't think people really comprehend exactly how ghastly this disease is... all my sister & brother-in-law can do is watch their only son slowly die. He's already lived well past his life expectancy. Can you imagine thinking at age 24 that your life would soon be over???! He's amazing... he never let the disease get him down. He graduated from college and operates his own business. His old high school even named an award after him.

Several years ago, my sister and brother-in-law were informed by a top researcher (formerly with the MDA--but now researching Muscular Dystrophy on his own), that "the MDA would NEVER find a cure for Muscular Dystrophy" because of the money the organization raises. If a cure was found... there'd be no more need to raise money. Now, my sister and some other parents of Duchenne's kids, give their money directly to this particular researcher.

Thanks again for this wonderful story!

dorsey said...

i watch Jerry Lewis Telethon video. this video is more entertaing. Jerry Lewis is one of my favorite tv show.