Author: Jon Merz
Date: 04-10-07 15:21
Source: Wall St. Journal
URL: http://www.wsj.com/
Date published: April 10th 2007
Forwarded by Sheri Alpert
Finding a Cure: Paying to Keep Your Drug Trial Alive; With Supply Low, Researcher Turns to Patients for Money; A Very Vulnerable Time
Amy Dockser Marcus. Wall Street Journal. (Eastern edition). New York, N.Y.: Apr 10, 2007. pg. D.1
Last May, Lee Hollett received an unsettling letter.
He had been taking an experimental drug as part of a clinical trial for patients with a fatal degenerative disease called amyotrophic lateral sclerosis, or ALS. But the trial's supply of the drug was running low, the letter warned, and there was no money to buy more.
Could Mr. Hollett send a check?
"I've kind of accepted that I have a terminal disease," says Mr. Hollett, a human-resources executive. "But my wife has high hopes that I'll live long enough to see a cure." And though the drug hadn't stopped the relentless progression of the disease -- he is now in a wheelchair -- Mr. Hollett believes it has helped him maintain critical lung capacity.
So Mr. Hollett donated $4,500; his former employer kicked in an additional $4,300. As he wrote out his check, he says, it was "in the back of my mind that the drug could run out" if he didn't contribute.
* * *
"Which is the more cruel scenario?" Dr. Bennett says he asked himself from the beginning. To never start the trial, or to "be open with the patients and the ALS community . . . that I had limited funding."
* * *
[Editor: note that the WSJ has monitored us and demanded that we take down their stories before, so this abstraction is being posted under the fair use provisions of US copyright laws; the interested reader is directed to the source to read the entire story.]
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