This is the opening to a fascinating and disturbing story in The Wall Street Journal:

“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?

That’s not the way clinical trials usually work. Typically, a patient’s main concern is simply getting accepted into a trial. Once enrolled, the drug is usually supplied by the manufacturer. Other funding would come from nonprofits, drugmakers, research centers or government agencies. Patients themselves may contribute to organizations that support research, but they don’t usually expect to help pay for the very trial they are participating in.

The fact that Mr. Hollett’s trial turned to such unusual fund-raising tactics underscores a great challenge in the world of rare diseases, where few treatment options may exist. Big drugmakers see little financial benefit in drugs for diseases such as ALS, with only around 5,600 new cases each year. So doctors and patients must often find creative solutions to get research off the ground and keep it going.”

Here’s a suggestion for the industry and it may present an opportunity to truly put patients first, find cures for disease and improve the collective image: why not use PhRMA to create a foundation for the express purpose of funding such dire situations? Every member contributes to a vehicle that would identify research for which funding appears not to exist. The incentive: developing needed treatments and saving lives - the industry’s stated purpose, yes?

Yes, there are hurdles, but they are surmountable. And certainly, the money is available. In this way, the industry could hold its head up and say it funds needed research, without strings attached, even when such investments won’t contribute a penny to its own bottom line. Simplistic? Fanciful? Perhaps. Please write in and say why it shouldn’t be explored.

The complete WSJ story here.

[tags]Clinical Trials, PhRMA, Research & Development[/tags]