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March 3, 2017

Study: 83 percent of major patient advocacy groups accept industry funding

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More than 80 percent of patient advocacy groups accept industry funding from drugmakers and medical device companies, according to a study published Wednesday in the New England Journal of Medicine.

According to the New York Times, patient advocacy groups typically represent the interests of sick individuals. For the study, researchers examined the 104 largest patient advocacy groups, based on annual revenue, that were operating at the national level in the United States. The researchers reviewed their websites, tax filings, and annual reports from 2014. More than one-third of the groups focused on a form of cancer and more than half had annual revenues of $7.5 million to $24.9 million.


The researchers found that 86 of the 104 groups, or 83 percent, received financial support from drugmakers and medical device companies.

Of the 18 organizations that did not report receiving such financial support, 13 posted no donor information. Further, only one of all 104 groups explicitly stated it does not accept financial support from industry stakeholders.

According to the researchers, 59 of the groups reported the amounts of donations they received. Of those, 39 percent disclosed at least $1 million annually in industry funding, with 11 receiving at least 10 percent of their financial support from industry donations.

Further, the researchers identified other potential conflicts of interest that were not related to funding.

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For example, the researchers found that as many as 37 groups had at least one drug, medical device, or biotechnology executive on their governing boards. In addition, four groups reported having at least one former industry executive on their active boards and 12 organizations reported that a current industry executive held a leadership seat on their boards. About one-quarter of the groups did not provide details about their board makeups.


Ezekiel Emanuel, an oncologist and vice provost at the University of Pennsylvania and a co-author of the study, said it likely "is a shock" that so many patient advocacy groups receive financial support from industry stakeholders. The study authors said requiring drug and medical device makers to report how much they donate to patient groups could help to improve transparency.

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In addition, study co-author Matthew McCoy, a post-doctoral fellow in advanced biomedical ethics at the University of Pennsylvania, acknowledged that the findings could spark concerns about conflicts of interest. He said, "I think the concern ... is that [the funding] will bias decision-making in some ways that are not in the best interest of the constituents the patient organization[s] serve."

Similarly, Vinay Prasad, an assistant professor of medicine at the Oregon Health and Science University who was not involved in the study, said patient groups and industry stakeholders often have conflicting missions, with patients wanting access to lower cost drugs and industry stakeholders wanting to maximize their revenues.

Patient advocacy groups say funding does not influence decisions

Some patient advocacy groups said industry donations do not influence their work.

Marc Boutin—CEO of the National Health Council, which serves as an "umbrella" organization for patient advocacy groups—said, "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."

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The Kidney Foundation said while it accepts industry donations, "this support does not drive policy positions, priorities, mission, or objectives." The group added that the one industry member who serves on its 24-member board is barred from voting on issues that relate to the individual's business.

Arthritis Foundation President Ann Palmer said, "Our corporate partners pay to sponsor events and tools." However, she added, "To keep the needs of people with arthritis at the center of what we do, the foundation makes advocacy and position decisions independently—our corporate partners do not shape our agenda or advocacy efforts." Palmer also said the group does not allow industry members to serve on its governing board.

The National Hemophilia Foundation, which received $8.5 million to $14 million from drugmakers in 2014, also said it does not allow industry support to inform its decision making. The group, which said it complies with "accepted financial reporting standards," added that it does not endorse specific products or companies.

Further, Randy Beranek, president and CEO of the National Psoriasis Foundation, said he does not thing patient advocacy groups receiving industry funding represents a conflict of interest. He said, "Our interests all intersect at some point, and that's at the patient."

In addition, Holly Campbell, a spokesperson for the Pharmaceutical Research and Manufacturers of America, said the group "work[s] with many organizations with which [it has] disagreements on public policy issues, including on prescription medicine costs, but believe[s] engagement and dialogue are critical" (Thomas, New York Times, 3/1; Kopp, Kaiser Health News, 3/1; Ross Johnson, Modern Healthcare, 3/1; Emery, Reuters, 3/1; Norman, Politico Pro, 3/1 [subscription required]; McCoy et al., NEJM, 3/2).

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