Every couple of years, when I have a little money, I contribute a few dollars to The ALS Association. It’s not much. It’s more symbolic than anything. As ALS, better known as Lou Gehrig’s disease, drove my grandmother to suicide, after years of suffering, I have a special place in my heart for people who find themselves wasting away with the debilitating illness. At any rate, when I saw this story about a new drug called Iplex, which people with ALS are finding difficult to obtain, I thought that I’d post a link here, just in case someone out there might find the information of use. (5,600 new ALS cases are diagnosed in the U.S. each year.) Here’s how the story in today’s New York Times begins:
As Lou Gehrig’s disease sapped Joshua Thompson of his ability to move and speak last fall, he consistently summoned one question from within the prison of his own body. “Iplex,” he asked, in a whisper that pierced his mother’s heart. “When?”
Iplex had never been tested in people with amyotrophic lateral sclerosis, the formal name for the fatal disease that had struck Joshua, 34, in late 2006. Developed for a different condition and banished from the market by a patent dispute, it was not for sale to the public anywhere in the world.
But Kathy Thompson had vowed to get it for her son. On the Internet, she had found enthusiastic reviews from A.L.S. patients who had finagled a prescription for Iplex when it was available, along with speculation by leading researchers as to why it might slow the progressive paralysis that marks the disease. And for months, as she begged and bullied biotechnology companies, members of Congress, Italian doctors and federal drug regulators, she answered Joshua the same way:
“Soon,” she said. “Soon”…