One of our areas of interest — and deep concern — is how corporate funding can pervasively skew an organizations’ perception of an issue in favor of the funder, while simultaneously silencing criticism.
Yesterday’s New York Times featured an insightful article on how patient advocacy groups, partly funded by the pharmaceutical industry, have curiously stayed mum about recent outrageous medication price hikes.
- “Public anger over the cost of drugs has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen. But one set of voices has been oddly muted — the nation’s biggest patient advocacy groups.”
- “To those who have closely followed the drug world, the reason is simple: Many of the groups receive millions of dollars a year in donations from companies behind the drugs used by their members. When they prod drug companies, it is generally for better — not less expensive — treatments.”
- ““It is a conflict of interest, because the interests of the pharmaceutical industry, from whom they are getting support, may be different from the interests of the patients,” said Dr. Michael Carome, the director of the Health Research Group at Public Citizen, a consumer advocacy group.”
- “And for patient groups, loudly addressing the issue can be perilous, as Cyndi Zagieboylo, the chief executive of the National Multiple Sclerosis Society, recently discovered.”
- “She said members of her group, one of the most influential patient charities, had identified cost as a priority. But as soon as Ms. Zagieboylo started discussing a plan — a modest proposal that involved bringing together drug makers, insurers and others to find solutions — she said she encountered resistance.”
- ““We were warned, you know, in a number of ways, just sort of to be careful about this,” Ms. Zagieboylo said. “A couple of pharmaceutical companies mentioned, ‘Boy, we support you, why are you doing this to us?’”
- “That influence is what makes patient groups so attractive to the drug industry. Some of the largest groups can call on millions of dedicated and highly motivated members and help drug companies by signing up participants for clinical trials, running financial assistance programs and even lobbying government officials for drug approvals or favorable legislation.”
- “The Leukemia & Lymphoma Society, for instance, one of the largest charities in the United States, has frequently criticized insurers for exposing patients to high out-of-pocket costs for patients, commissioning two studies that looked at the impact of these high costs. But it has not been as outspoken about the decision by drug companies to set those prices.”
- “According to its annual report, of the group’s 16 largest donors, eight were pharmaceutical companies. All eight donated more than $1 million to the society in 2015.”
- “The group has been soliciting corporate sponsorships as well. On its website promoting sponsorships, aimed at drug and other companies, the society pointed to its “powerful footprint” of millions of constituents, and described itself as “an outstanding cause to build good will, positive public relations and marketing benefits that align with your brand and reputation.”
It is no surprise that we see a similar pattern with health organizations that take funding from industry. Canada’s Heart and Stroke Foundation, for instance, didn’t start publicly challenging and decrying food industry problematic behavior until it severed ties with those players.