Industry Ties to Patient Advocacy Board Members, Execs Raise Concerns

Pictured: Board of directors illustration/Courtesy, iStock, Vector DSGNR

Pictured: Board of directors illustration/Courtesy, iStock, Vector DSGNR

Most leading U.S. patient advocacy organizations have board members or senior leaders with ties that raise questions about industry influence over their policies, according to a research letter published Monday in JAMA Internal Medicine.

The stated goal of patient advocacy organizations (PAOs) is to further the interests of the patients they represent through activities such as disease awareness campaigns and engagement with policymakers. However, the influence of pharma and medical device companies over PAOs is a long-standing concern. In 2017, researchers found that 83% of PAOs reported receiving money from industry and 36% had a current industry employee on their board. 

Now, researchers at Yale School of Medicine have provided an updated look at the links between people in senior positions at PAOs and the medical products industry. The analysis of the 50 highest-revenue U.S. patient advocacy groups found widespread links between pharma and medtech companies and PAOs.

According to the authors of the paper, “close leadership ties of PAOs with industry raise questions about industry's influence on these organizations’ patient education, policy recommendations and treatment guidelines.”

Of the analyzed PAOs, 74% had board members with prior or current industry ties. The presence of paid PAO staff or executives with industry ties was common as well. Half of the PAOs employed people with current or former ties to industry. At 22% of the PAOs, executive directors or CEOs had industry ties.

Four of the executives with industry ties served on boards of pharma or medtech companies. Large and small companies were found to have ties to PAOs. For example, American Cancer Society CEO Karen Knudsen sits on Genentech’s scientific resource board while smaller companies such as Coherus Biosciences also have PAO leaders on their boards.

“What was particularly concerning as well is that some of these organizations had in their leadership people who not only have worked for industry in the past, but currently were actively working for industry, including some CEOs or executive directors. I think that that degree of ties is a little concerning, to say the least,” Yale’s Shamik Bhat, co-author of the paper, told MedPage Today.

One unanswered question is whether the links between PAOs and industry affect the policies adopted by patient advocacy groups. While evidence remains anecdotal, researchers have noted that “PAOs have a credibility that pharmaceutical companies not uncommonly lack” to explain why industry may be keen to influence their policies. In addition, a recent report identified overlaps between PAO and industry policies.

Nick Paul Taylor is a freelance pharmaceutical and biotech writer based in London. He can be reached on LinkedIn.

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