8 out of 10 Patient-Advocacy Groups Have Conflict-of-Interest Problems, Study Finds

By Perry, Susan | MinnPost.com, March 3, 2017 | Go to article overview

8 out of 10 Patient-Advocacy Groups Have Conflict-of-Interest Problems, Study Finds


Perry, Susan, MinnPost.com


More than 80 percent of prominent non-profit organizations that advocate for patients with cancer, diabetes, heart disease, lupus, mental illness and other conditions accept funding from drug and medical device companies, raising questions of conflicts of interest, a new study has found.

The study also found that about 40 percent of the organizations have a current or former pharmaceutical industry executive on their board of directors.

These findings are troubling, as patient-advocacy groups are at the center of many high-profile healthcare debates, such as what a drug or other medical therapy should cost and whether the therapy should be approved at an accelerated pace (before large clinical trials have proven its efficacy and safety).

In such instances, the interests of the pharmaceutical and medical device industries can be at odds with those of patients.

Greater transparency is needed from patient-advocacy organizations, say the authors of the study, which was published online Thursday in the New England Journal of Medicine (NEJM).

"If you're a policymaker and you want to hear from patients, there's a danger if there's an undisclosed or underdisclosed conflict of interest," Matthew McCoy, the study's lead author and a medical ethicist at the University of Pennsylvania, told Kaiser Health News reporter Emily Kopp. "The 'patient' voice is speaking with a pharma accent."

Study details

For the study, McCoy and his colleagues examined the tax records, annual reports and websites of 104 large, national not-for-profit patient-advocacy groups. All the groups reported annual revenues of more than $7.5 million for 2014 -- a financial cutoff that enabled the researchers to focus on organizations that have the greatest impact on public attitudes and policy.

More than one-third of the 104 organizations (37 percent) focused on some form of cancer, and more than half had annual revenues in the range of $7.5 million to $24.9 million.

Here are the study's key findings:

* Overall, 86 of the 104 groups (83 percent) reported receiving financial support from drug, device and/or biotechnology companies. "The support was often substantial, with at least 39% of the organizations that disclosed donation amounts receiving at least $1 million annually from industry," McCoy and his co-authors write.

* At least 39 percent of the organizations had a current or former industry executive on their governing board, and at least 12 percent had a current or former industry executive in a leadership role on the board. …

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