chart of patient advocacy executives

Patient advocacy organizations supply knowledge and funds to combat illness and disease. But their boardrooms and executive suites are often full of people with ties to the drug industry, a new study shows.

In a research letter on patient advocacy organizations (PAO’s) by the American Medical Association published in JAMA Internal Medicine, the authors found: “Among the 50 highest-revenue PAO’s in the U.S., three-fourths had board members, senior paid staff, or executives with prior or current ties to the pharmaceutical and medical device industries.”

“In total, 37 PAO’s (74.0%) had board members and 25 (50.0%) had paid staff or executives with prior or current industry ties, including 11 PAO’s (22.0%) with executive directors or CEO’s with industry ties.”

This is important because the organizations don’t just support patients with awareness of their illness or condition and means of treatment, but also engage with policymakers, lawmakers and companies making drugs or treatments. A lopsided emphasis on a certain medication could easily be a result of a too-cozy relationship between a drugmaker and a patient group.

Of the 20 highest-revenue patient organizations, the report said, 5 executive directors or CEO’s had prior or current industry ties, including 4 of the 5 largest. Of the 11 with executive directors or CEO”s with industry ties, 4 were serving on drug company boards; The American Cancer Society (Genentech), Michael J. Fox Foundation for Parkinson (Pfizer), Cancer research Institute (Coherus Biosciences) and Foundation Fighting Blindness (Opus Genetics).

Funding from drug companies

Drug companies also influence advocacy organizations with donations. In an investigation titled “Patient Advocacy Groups Take In Millions From Drugmakers. Is There A Payback?” the KFF Health News reporters documented donations.

“Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new database logging 12,000 donations from large publicly traded drugmakers to such organizations,” the investigation said.

“The database, called ‘Pre$cription for Power,’ shows that donations to patient advocacy groups tallied for 2015 — the most recent full year in which documents required by the Internal Revenue Service were available — dwarfed the total amount the companies spent on federal lobbying. The 14 companies that contributed $116 million to patient advocacy groups reported only about $63 million in lobbying activities that same year.”

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...