For more than four decades, on telethons featuring celebrity performers and children in wheelchairs, Jerry Lewis has been raising money each Labor Day for the Muscular Dystrophy Association and the disease that helped make “poster child” part of the American idiom.
On the most recent telethon, which was staged in Las Vegas and raised $63.8 million, the “Law and Order” actress Mariska Hargitay spoke of patients’ “hope that M.D.A. research will lead to treatments and cures.” Mr. Lewis, who has never disclosed why he chose this disease as his cause, once again closed the broadcast with an emotional rendition of the song “You’ll Never Walk Alone.”
But 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.
The approach is changing at a few medical centers, which are focused on making better use of available therapies to eke out longer lives for their patients. Rather than concentrate only on a cure, some researchers are now intent on developing drugs that may alleviate the effects of the disease.
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