The Penn research team – which included Matthew McCoy, Harald Schmidt and Ezekiel Emanuel – examined websites and annual reports for 104 organizations with annual revenues over $7.5 million.
Most of the organizations examined took money from the companies they also worked with on behalf of patients. But other than that, there were few details when it came to the exact amount of donations and how the organizations used the donations.
The Penn group concluded that the U.S. needs a “sunshine” law to cover industry payments to patient advocacy organizations.
Emanuel, who was a health care advisor for former President Barack Obama, told The New York Times that medical researchers have been pushed to disclose ties to the pharmaceutical and medical device industries. In comparison, patient advocacy organizations are “pathetic” in their disclosures but “wrap themselves in white as if they’re pure,” Emanuel told the Times.
Marc M. Boutin – CEO of the National Health Council, an umbrella for patient advocacy groups – responded in the article that patient-advocacy organizations are driven by their missions, to put patients first.