March 1, 2017
The nation’s largest patient advocacy groups are on the front lines of some of the biggest health care debates, from the soaring costs of prescription drugs to whether new medicines are being approved quickly enough.
But while their voices carry weight because they represent the interests of sick patients, a new study has found that more than 80 percent of them accept funding from drug and medical-device companies. For some groups, the donations from industry accounted for more than half of their annual income, and in nearly 40 percent of cases, industry executives sit on governing boards, according to the study, which is published in The New England Journal of Medicine.
Nearly “nine out of every 10 are taking money,” said Dr. Ezekiel J. Emanuel, an oncologist and vice provost at the University of Pennsylvania. He is one of the authors of the study, which looked at the top 104 nonprofit patient advocacy groups that reported more than $7.5 million in annual revenues for 2014. “I think that is not well known — I think that is a shock.”
Dr. Emanuel, who previously advised President Obama on health care, said patient groups were far less transparent about conflicts of interest than medical researchers, who are now pushed to disclose ties to the drug and device industries when they write articles and make public appearances…
…The study’s authors said transparency could be improved by requiring the drug and device industries to report how much they donate to patient groups, much like they are already required to do with doctors.
That was applauded by other critics of the drug industry. “I think sunshine is an excellent disinfectant,” said David Mitchell, the founder of a new group, Patients for Affordable Drugs, that seeks to lower drug prices, and does not take funding from industry groups. He was not involved in the study.
Mr. Mitchell said patient groups often do not disclose that they take industry funds when they testify before Congress or government agencies, or when they disseminate educational information to patients.