As Lou Gehrig\u2019s 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. \u201cIplex,\u201d\u009d he asked, in a whisper that pierced his mother\u2019s heart. \u201cWhen?\u201d\u009d<\/p>\n
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.<\/p>\n
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:<\/p>\n
\u201cSoon,\u201d\u009d she said. \u201cSoon.\u201d\u009d<\/p>\n