Activist and patient liaison Mike Donnelly says he has benefited from rhNGF since he entered the trial in 1996--and Genentech knew it.
"Before rhNGF I had lost the ability to walk a block or climb a flight of stairs," McElroy wrote in May.
Genentech had developed rhNGF for a different-and potentially much more profitable--market: the more than 4 million Americans who suffer from diabetic neuropathy.
Doctors who conducted the HW trials saw very positive results: rhNGF didn't make patients sick or interact with other drugs (some AIDS drugs can bring on additional illness by interacting with other medicines), patients got great relief from pain, and there was evidence of modest neurological improvement.
Last April, though, Genentech pulled the plug on further rhNGF studies when the drug proved ineffective in the diabetes trial.
He didn't want funds--there was enough money from a running NIH grant to back another study of several hundred patients; all he needed was for the company to supply the rhNGF. According to McArthur, he was sent a reply saying that Genentech would not provide rhNGF for future studies.