Leadership of Patient Advocacy Organizations Tied to Pharma and Device Industry

A study reveals significant industry involvement in the leadership and funding of patient advocacy organizations, raising questions about the impartiality of these organizations in representing patient interests.

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Patient advocacy organizations (PAOs) spread awareness about diseases and their treatments and advocate for funding research and treatment access. About half, though, are at least partially funded by the pharmaceutical and medical device industries.

In addition to receiving money directly from the industry, PAOs may also be led by or staffed by current or former industry executives. A new study has found that of the top 50 PAOs by revenue, 74% had board members involved in industry.

“There are concerns that in addition to industry financial support—which nearly half of PAOs accept—having individuals formerly or currently based in industry serve on PAOs’ boards of directors and as senior leadership may influence PAOs’ priorities, advocacy, and recommendations,” the researchers write.

The study was conducted by researchers Shamik Bhat, Joseph S. Ross, and Reshma Ramachandran at Yale University and published in JAMA Internal Medicine.

The close ties between patient advocacy organizations (PAOs) and the pharmaceutical and medical device industries have raised concerns about the impact on patient advocacy itself. Critics argue that when these organizations financially depend on industry funding or have industry executives on their boards, their advocacy efforts may be compromised. This could lead to skewed priorities, biased information dissemination, and recommendations that favor the industry’s interests over those of patients. The essence of patient advocacy, which is to represent patients’ best interests, may be at risk when industry influence is prevalent.

Concerns have been raised about how these nonprofit organizations, receiving millions from industry, are used as an unofficial marketing arm to consumers and to pressure the FDA to approve new drugs. For instance, to get the FDA to approve its Alzheimer’s drug aducanumab, which the FDA’s advisory board voted 10-0 against, Biogen poured money into patient groups like the Alzheimer’s Association and UsAgainstAlzheimer’s, which promoted Biogen’s claims and helped the company argue that patients were clamoring for accelerated approval.

According to the new study, almost three-quarters of the PAOs (74%) had board members involved in the pharma or device industry, 50% had paid staff or executives with industry ties, and almost a quarter of the PAOs (22%) had an executive director or CEO with industry ties.

Four of the five largest PAOs had a CEO or executive director with industry ties.

“Close leadership ties of PAOs with industry raise questions about the industry’s influence on these organizations’ patient education, policy recommendations, and treatment guidelines. In representing patients across health policy forums, PAOs should make their industry relationships transparent in terms of both finances and leadership to foster trust in their independence,” Bhat, Ross, and Ramachandran write.

In addition to fostering transparency within PAOs, regulatory bodies like the FDA should also be vigilant in scrutinizing the potential influence of industry-funded patient advocacy groups on their decision-making processes. While patient voices are essential in shaping healthcare policy, regulatory agencies must ensure that the input they receive from PAOs is unbiased and reflective of the broader patient population’s needs and concerns.

To strengthen the integrity of patient advocacy efforts, it is crucial for stakeholders, including healthcare professionals, researchers, and philanthropic organizations, to support and fund independent patient advocacy initiatives. These initiatives can serve as a counterbalance to industry-influenced organizations, ensuring that the patient’s voice remains genuine and unbiased in the healthcare decision-making process.

 

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Bhat, S., Ross, J. S., Ramachandran, R. (2023). Medical product industry ties to patient advocacy organizations’ executive leadership. JAMA Intern Med, 183(10), 1164-1166. doi:10.1001/jamainternmed.2023.2842 (Link)

11 COMMENTS

  1. “This could lead to skewed priorities, biased information dissemination, and recommendations that favor the industry’s interests over those of patients.”

    Yes. I’ve often seen that bias. I hate to be too cynical, but I don’t believe healthcare professionals, researchers, and philanthropic organizations will help because they also are often compromised, as is the FDA and, of course, Congress.

    I’m not sure there are any solutions.

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  2. Thank you for this succinct summary among your many other articles that are so useful. Psychoactive caffeine just helped me to arrange that short string of words. I value your “Brain Energy”. However, I would like to acknowledge the Spirit of God for my breath and any truth that I manage to accurately describe in the years remaining for me to walk the surface of earth.

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  3. I saw this specialization breaking apart the concept of chronic illness and each specific condition then had a society or special group with sometimes umbrella orgs for issues like cancer.So yes Miranda not just NAMI.
    I would wonder about the so called profession of medical supply: pharma reps.
    I imagine most have little to no frontline experience with the product of their company and many seem at least ones that I have interacted with enamored of hospitals and big interest in sering operations almost a Hollywood celebrity fixation on the medical / scientific world.
    There is also the issue of gjost writing and medical tech writing and other tech writing used to be a thing.
    In many ways have a framework for support is helpful but if the financial support is coming from backers who see it as more public relations for them and their innovations then unethical and vile at worst.
    Carnival barkers shenanigans combined with medical / scientific charlatans is as many in our country today can seed is a recipe for disaster.
    Once the recipe is used cannot not be undone so one has to change it and the listed ing rodents and one woukd think and hope a truth and reconcilliation fir those and their professions to the people they hurt and damaged as well as for their peers who basically they stomped as they climbed the ladder to power , celebrity, success, wealth and mendacity and moral turpitude.

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  4. I am so pleased that this travesty is finally being exposed. I have for decades spoken out about the biases and potential ethical lapses when having Pharma on the Boards of Patient Advocacy organizations. Having spent time in the public sector I have seen first hand the use of Patient Advocacy by Pharma for their own profits. To have an article in JAMA Internal Medicine calling out this ethical breach is exciting. Hope to see more in the future.

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