Many large patient advocacy groups receive funding from drug industry, study says

A majority of the biggest patient advocacy groups in the country received drug industry funding last year, with many receiving as much as $1 million or more, a study has found.

The study, which was conducted by a team from the University of Pennsylvania, found that 86 of 104 organizations received funding from drug, medical device and biotechnology companies.

Matthew McCoy, one of the authors and a post-doctoral fellow at the university's Department of Medical Ethics and Health Policy, said the study recommends more transparency about industry involvement in patient advocacy groups.

The study was published in the New England Journal of Medicine.

The authors examined 104 large patient-advocacy organizations and found that 83 percent, or 86 of them, received financial support from drug, device and biotechnology companies, while industry executives often serve on governing boards. The companies all had annual revenues of at least $7.5 million.  

Of the 59 groups that disclosed donation amounts, approximately 39 percent of the groups studied received annual industry donations totaling at least $1 million or more in 2016.

The questions included how common it is for patient-advocacy organizations to receive funding. And the answer was "incredibly common," McCoy told American Pharmacy News.

The authors also tried to establish the amounts the groups received, but McCoy said that proved difficult because many did not respond, while others only revealed broad bands.

McCoy said they did not try to take the next step to connect the donation to particular actions taken by the organization. But it does raise questions over just how vocal the organizations are when it comes to high drug prices and whether they disclose the donations when lobbying in Washington, he said.

"It would be very difficult to drive a clear arrow between the two, but that is part of the reason they always have to be vigilant about conflict of interest," McCoy said.

Some of the groups are pushing back in the study.

“Patient advocacy organizations are driven by their missions–putting patients first,” Marc Boutin, CEO for the National Health Council, the umbrella organization for advocacy groups, told Modern Healthcare in a statement. “To say otherwise, negates the extraordinary work achieved by these organizations on behalf of their patients.”

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