Top Patient Advocacy Orgs Have Industry Ties in Leadership

Of the 50 PAOs reviewed, 74% had board members with prior or current industry ties, and 50% had paid staff or executives with these ties, reported Reshma Ramachandran, MD, MPP, MHS, of Yale University School of Medicine in New Haven, Connecticut, and colleagues.

Eleven PAOs had executive directors or CEOs with industry ties, and of the 10 highest-revenue PAOs, five executive directors or CEOs had prior or current industry ties, they noted in a research letter published in JAMA Internal Medicineopens in a new tab or window.

PAOs should “advance patient interests through promotion of disease awareness, engagement with policymakers, and partnership with medical product manufacturers in research and development,” the authors wrote.

“Close leadership ties of PAOs with industry raise questions about industry’s influence on these organizations’ patient education, policy recommendations, and treatment guidelines.”

According to co-author Shamik Bhat, BS, also of the Yale School of Medicine, “the vast majority of these groups have not only financial ties, but now we can see that they also have deep integration in their boards, and their higher-up leadership, with industry.”

“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,” she told MedPage Today. “I think that that degree of ties is a little concerning, to say the least.”

Of the 11 PAOs that had executive directors or CEOs with ties to industry, four were also serving on pharmaceutical company boards at the same time: the American Cancer Society (Genentech), the Michael J. Fox Foundation for Parkinson’s Research (Pfizer), the Cancer Research Institute (Coherus Biosciences), and the Foundation Fighting Blindness (Opus Genetics).

Previous studies have shown financial conflicts of interest between PAOs and industry, and some have also examined executives and board members of PAOs with industry connections. One such studyopens in a new tab or window by Matthew S. McCoy, PhD, of the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, and colleagues, showed that 83% of 104 high-revenue PAOs received financial support from industry, and 36% had at least one current drug, device, or biotechnology company executive on the governing board.

“The full scope of this support and the severity of conflicts of interest remain difficult to determine given the disclosures of the organizations,” McCoy’s group wrote.

In the current study, Ramachandran and colleagues turned to personal websites and LinkedIn profiles to decipher industry ties in leadership. “Whether it’s intentional or not, I think transparency for a lot of these patient advocacy organizations is a pretty significant weakness at the moment,” Bhat noted.

The effects of such conflicts remain hazy and “anecdotal,” Ramachandran told MedPage Today, but “a number of these patient advocacy organizations seem to be echoing what the companies are talking about”; for example, FDA standards for drug or device approval, or “keeping quiet when there are issues around drug pricing.”

She said that a recent report from the organizationopens in a new tab or window Patients for Affordable Drugs found alignment between certain PAO statements and policies with related industry positions.

For instance, when aducanumab (Aduhelm) was granted FDA approval, Ramachandran said that she had patients come to her with materials from the Alzheimer’s Association — which had financial ties to Biogen — “promoting the drug, not really talking about risks behind the drug, and really saying to patients, ‘talk to your doctors about this, so you can immediately get access to be able to take this miracle cure.'” The drug’s effectiveness has since been called into questionopens in a new tab or window.

“Patients and their families were really relying on the Alzheimer’s Association and the chapters within the state to actually provide them resources and information and ways to navigate the diagnosis,” she continued. “And so the fact that that was being colored by … this biased push that was undergirded by the company in favor of this drug that was not truly safe, and not effective, was very disturbing.”

These organizations, the study authors concluded, must make their industry ties transparent “in terms of both finances and leadership to foster trust in their independence.”

Ramachandran said a CMS tool like OpenPayments, which tracks industry ties for individual physicians, could do the same for the disclosure of industry involvement with PAOs. These organizations could also restructure, making industry players a minority of their boards, or create uncompensated and independent advisory groups to review clinical evidence for treatments.

Physicians should ask questions about PAO funding and leadership on behalf of their patients, and evaluate medical treatments based on evidence alone, the authors stressed.

For the study, Ramachandran and team used GuideStar, a database of nonprofits, to identify the 50 highest-revenue U.S.-based PAOs as of July 2022. All PAOs were public charities focused on a specific disease or therapeutic area. They also used annual reports and tax documents to determine revenue, and PAO websites, LinkedIn profiles, personal websites, and biographies on other websites to determine PAO leadership and industry ties.

Of the 50 highest-revenue PAOs, 19 were focused on therapeutic areas, 28 on specific diseases, and three on medical support services. Median annual revenue was $49.7 million and varied by disease focus.

The PAOs had a median of 20 board members and 8.5 paid staff or executives. Of 1,091 total board members across the organizations, 10.9% had prior or current industry ties, as did 10.9% of paid staff or executives.

Study limitations included incomplete disclosure of board members, senior paid staff, or executive employment history, as well as the possibility of omissions from website profiles, likely underestimating the characterization of industry ties, the authors noted.

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