"Conflicts of Interest for Patient-Advocacy Organizations"
Matthew S. McCoy, Ph.D., Michael Carniol, M.B.A., Katherine Chockley, B.A., John W. Urwin, B.S., Ezekiel J. Emanuel, M.D., Ph.D., and Harald Schmidt, Ph.D.
N Engl J Med 2017; 376:880-885March 2, 2017DOI: 10.1056/NEJMsr1610625
http://www.nejm.org/doi/full/10.1056/NEJMsr1610625#t=articlePatient-advocacy organizations are nonprofit groups whose primary mission is to combat a particular disease or disability or to work toward improving the health and well-being of a particular patient population.1
This study shows that among 104 of the largest U.S.-based patient-advocacy organizations, at least 83% received financial support from drug, device, and biotechnology companies, and at least 39% have a current or former industry executive on the governing board.
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"More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows"
By KATIE THOMASMARCH 1, 2017
https://www.nytimes.com/2017/03/01/health/patient-groups-drug-industry-money.html?mcubz=0&_r=0“Patient advocacy organizations are driven by their missions — putting patients first,” said Marc M. Boutin, the chief executive of the National Health Council, an umbrella group for patient-advocacy groups.
Last summer, patients and their families loudly protested the skyrocketing price of EpiPens, though the movement gathered steam on social media rather than through traditional patient-advocacy groups.
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"How Parents Harnessed the Power of Social Media to Challenge EpiPen Prices"
By Tara Parker-Pope
August 25, 2016 9:28 am
https://well.blogs.nytimes.com/2016/08/25/how-parents-harnessed-the-power-of-social-media-to-challenge-epipen-prices/Patient advocacy groups, which typically are vocal on all issues related to food allergies, have been largely silent.
Since 2011, Mylan says, it has provided more than $10 million in funding for “educational efforts,” such as sponsorships and grants, and has received corporate citizen awards from FARE and the Allergy & Asthma Network.
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"When a Drug Coupon Helps You but Hurts Fellow Citizens"
Austin Frakt
THE NEW HEALTH CARE SEPT. 25, 2017
https://www.nytimes.com/2017/09/25/upshot/when-a-drug-coupon-helps-you-but-hurts-fellow-citizens.htmlThough such coupons assist patients, they do nothing for insurers, for whom generics are still a better deal. And that’s the problem. By encouraging patients to switch from generic to brand drugs, coupons effectively impose higher costs on insurers. That ends up increasing premiums, and not for any particularly good reason.
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"Pharma Money Reaches Guideline Writers, Patient Groups, Even Doctors on Twitter
A series of studies published today documents the vast conflicts of interest in medicine. The way we think about disease “is being subtly distorted” by financial ties, the authors of an editorial write."
by Charles Ornstein,
Jan. 17, 12 p.m. EST
https://www.propublica.org/article/pharma-money-reaches-guideline-writers-patient-groups-doctors-on-twitterMost organizations reported having a conflict-of-interest policy, but a much smaller percent said that their groups had policies for public disclosure of those relationships.
A preliminary analysis of tweets by these doctors, not yet published, has shown that “a sizable percentage are tweeting about drugs that they have specific ties to,” oncologist Vinay Prasad, one of the authors of the study and an assistant professor of medicine at Oregon Health & Science University, said in an interview.
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"How Drug-Company 'Benevolence' Silences the Sick"
by Joe Nocera
April 18, 2017 10:00 AM
https://www.bloomberg.com/view/articles/2017-04-18/valeant-drug-company-benevolence-and-the-silence-of-the-sickTo the delight of Wall Street, Valeant had built its business by buying companies with drugs that were the gold standard for a particular disease, and then raising prices relentlessly.
We’re working very closely to try to make a difference in patients’ lives, and that’s exactly what we think our effort with the Wilson’s Disease Association is meant to do.
I am really bothered that Valeant is calling us ‘partners’ in order to boost their stock price
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Food allergy group with ties to EpiPen maker says no to future donations
By Ike Swetlitz @ikeswetlitz and Ed Silverman @Pharmalot
September 9, 2016
https://www.statnews.com/pharmalot/2016/09/09/epipen-mylan-food-allergy/A major food allergy advocacy group said this week that it would stop accepting donations immediately from drug companies selling epinephrine auto-injectors until there is “meaningful competition” in the market.
Dr. James Baker, would not specify the exact amount of money that Mylan has donated to FARE
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"Outcry Over EpiPen Prices Hasn’t Made Them Lower"
Charles Duhigg
https://www.nytimes.com/2017/06/04/business/angry-about-epipen-prices-executive-dont-care-much.html?_r=0He raised both his middle fingers and explained, using colorful language, that anyone criticizing Mylan, including its employees, ought to go copulate with themselves. Critics in Congress and on Wall Street, he said, should do the same. And regulators at the Food and Drug Administration? They, too, deserved a round of anatomically challenging self-fulfillment.
we put people and patients first
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The food allergy patient community should not only think about pharma influence, but also food industry influence imo ...
for example, this thread:
Re: sesame seeds labeling: US specific (laws, loopholes)