“Patient advocacy” groups have a unique power on Capitol Hill. They claim to represent the true voice of constituents, untainted by special interest bias. Politicians and the Food and Drug Administration use their endorsements as reflective of genuine public support.
But a new study shows that nearly all of these patient advocacy groups are captured by the drug industry.
David Hilzenrath at the Project on Government Oversight (POGO) reports that at least 39 of 42 patient advocacy groups who participated in discussions with the FDA over agency review processes for prescription drugs received funding from pharmaceutical companies. And at least 15 have representatives of drug or biotechnology companies on their governing boards.
The study is particularly notable now because Congress is poised to pass the 21st Century Cures Act, which trades temporary additional funding for the National Institutes of Health and the FDA for permanent weakening of the FDA’s approval process. Over 1,400 lobbyists have been working on this bill, which would be a major financial boon to the drug and medical device industries.
Patient advocacy groups have factored heavily into the lobbying effort. According to an analysis from research group Avalere in December 2014, 43 percent of public comments on the House version of the bill were from patient advocacy groups.
But those groups are not necessarily independent, POGO warns.
For instance, the National Health Council, a group that calls itself “The United Patient Voice” and has advocated before the FDA for faster drug approvals, includes on its board of directors leaders of the two main trade groups for the drug industry — Pharmaceutical Research and Manufacturers of America (PhRMA), and Biotechnology Innovation Organization (BIO) – along with executives from drug companies Sanofi, Johnson & Johnson, and Alkermes. PhRMA gave the National Health Council $1.2 million in 2014; in all, 77 percent of its funding came from the pharmaceutical and biotech industries, according to POGO. Its “Policy Action Team” also has a PhMRA representative on it, along with an employee of Johnson & Johnson.
Pfizer, the drug company giant, even listed the National Health Council as a “Trade Association Membership” on its lobbying forms.
Another group, the Leukemia and Lymphoma Society, received at least $1 million in funding from Bristol-Myers Squibb, Celgene, Genentech, Gilead, Novartis, Pharmacyclics/Janssen, and Takeda Oncology. Joseph Kelley, a vice president of government affairs (which typically means lead lobbyist) for Eli Lilly, sits on the Leukemia and Lymphoma Society board, along with Bristol-Myers Squibb executive Renzo Canetta, and Dana Callow of PAREXEL, a liaison to drug companies on clinical trials.
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It is only our naivety that has us expect it to be any different. It is ever thus when you get close to the centre of power.
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