83% of patient advocacy groups accept payouts from pharma

A large majority of patient advocacy groups accept money from drug and medical device makers, a new study has found.

Though patient advocacy organizations are often key arbiters in discussions about issues like rising drug and healthcare costs, a significant majority accept payouts from the pharmaceutical industry, according to a new study.

Researchers at the University of Pennsylvania found that 83% of patient advocacy groups accepted donations from drug or medical device makers.

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The study, published in the New England Journal of Medicine, also found that in close to 40% of cases, executives in the pharmaceutical industry sit on governing boards of patient groups. For some groups in the study, donations from the industry make up more than half of their annual income.

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The study examined financial data for the top 104 patient advocacy groups that reported more than $7.5 million in revenue per year. Ezekiel Emanuel, M.D., vice provost at the University of Pennsylvania and one of the study’s authors, told The New York Times that these patient advocacy groups “wrap themselves in white as if they’re pure.”

He told the publication that these groups should have to disclose ties to industry in the same way as medical researchers, who are pushed to reveal connections to industry groups as they perform research and speak in public. 

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Some patient advocacy groups are taking aim at the study’s findings. For instance, National Health Council CEO Marc Boutin, said in a statement (PDF) that the organizations under its umbrella adhere to 38 standards, about 16 of which are designed to ensure that the group’s mission is kept separate from donations.

“Patient advocacy organizations are driven by their missions—putting patients first,” Boutin said. “To say otherwise negates the extraordinary work achieved by these organizations on behalf of their patients.”

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