Pharma Funds Patient Advocacy Groups Big-Time

UPDATED

Drug manufacturers are working hard to redefine their public image, arguing that they’re not the bad guy when it comes to soaring prices. Into that ongoing discussion slips this nugget: Patient advocacy groups receive a lot of funding from drug companies, and for some of these groups that funding accounted for more than 50% in income, according to a study in the New England Journal of Medicine.

“In this examination of 104 large patient-advocacy organizations, 83% receive financial support from drug, device, and biotechnology companies, and industry executives often serve on governing boards,” the study states. “The authors recommend more transparency about industry involvement.”

The study’s researchers hail from the University of Pennsylvania and are led by Ezekiel Emanuel, one of the main architects of the ACA. They looked at donations to patient advocacy groups for 2014, but sometimes the data were hard to come by because some groups, such as the National Hemophilia Foundation, can be vague about its funding sources, according to the New York Times. They found that the top donors that year to the National Hemophilia Foundation were Baxter, Biogen, and Novo Nordisk, each donating between $2 million and $3 million. They make medications for people with hemophilia.

On the other hand, the American Diabetes Association was out front about receiving more than $28 million in pharmaceutical company donations 2014. That represented about 15% of its budget.

Marc M. Boutin is the CEO of the National Health Council, made up of patient-advocacy groups. He defended the advocacy groups, telling the New York Times that, “Patient advocacy organizations are driven by their missions—putting patients first. To say otherwise negates the extraordinary work achieved by these organizations on behalf of their patients.” About 62% of the council’s $3.5 million budget in 2015 came from drug companies.

Source: New York Times

Correction: An earlier version of this story incorrectly identified the National Psoriasis Foundation as the organization getting donations from Baxter, Biogen, and Novo Nordisk.