ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, January 30, 2014

Let The Sunshine, Let The Sunshine In, The Sunshine In

Now that you're humming a hit from the 1960s...

Yesterday I read a journal article related to ALS clinical trials.  In the department of unintended consequences, the end of the article caught me totally off guard.

One of the authors, a long-time head scientist at an ALS charity, had disclosures to share under "Declarations of Interest," showing consulting (I'm assuming paid consulting) for three pharmaceutical companies.  Those declarations certainly don't include any dates, and they don't tell you whether it was a $25 lunch meeting a decade ago or a $2,500 speaking fee or a $25,000 consulting fee last year.

In recent years there has been sunshine (both voluntary and regulatory) shed on pharmaceutical industry payments to physicians.  Is there any light shining on such payments to the many non-physician medical researchers whose work is funded by our charitable donations?

I think there should be.  That would be easy enough for not-for-profits to do voluntarily and would certainly be pertinent information for donors and people with ALS to know. Everyone would win.

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