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The Funding of Patient Advocacy Groups

By March 14, 2017Commentary

Now here is an interesting article that shines a little light on a potentially dark corner of the health care web.  Patient advocacy organizations have become very prevalent, usually focusing on issues faced by sufferers from a particular disease.  These organizations frequently support research on new therapeutics, push regulators for approval, try to get coverage and reimbursement for therapies and provide general support for patients.  They obviously can serve a valuable role.  Unfortunately, drug and device companies have seen these organizations as a path to secure more revenue and profit.  A New England Journal of Medicine article examines links between these companies and patient advocacy groups.   (NEJM Article)   The authors looked at tax forms, annual reports and websites of patient advocacy organizations with at least $7.5 million in revenue to try to determine the extent to which these organizations received funding from drug or device companies or had representatives of drug or device firms on their boards.  They also looked at the conflict of interest policies of these groups.  The results are concerning.

Out of the 104 groups that met the inclusion criteria, 13 published no information about donors either on the website or in an annual report, and those that do publish such information often aren’t providing all of it.  Only 57% published any information on the amount of donations and 5% the exact amounts, as opposed to ranges.  Most provided no information on how donations were used.  86 of the organizations reported receiving financial support from industry.  Many of the remaining organizations didn’t report donations; it is logical to believe they were at least as likely to have industry support.  Only one such group explicitly said it did not take industry money.  Only 59 organizations gave donation amount data and then typically in ranges.  23 of these groups got at least a million dollars of drug and device money.  37% of the organizations had at least one current drug or device company executive on their boards.  Perhaps most revealing, only 27 groups published any conflict of interest policy.

Patients are entitled to believe that organizations supposedly working on their behalf are doing so in an objective manner untainted by the commercial interests of product manufacturers.  Product manufacturers don’t have identical interests to those of patients.  They have been known to exaggerate benefits and minimize risks.  A true patient advocacy group should simply not accept funding of any type from product firms and shouldn’t have their representatives on their board.  The absence of conflict of interest policies at many of these organizations suggests they don’t understand the importance of neutrally working for patients.  At a minimum, as the authors suggest, these groups should be required to fully disclose the source, direct or indirect, and amounts of all funding they receive, as well as detailed information about every board member, and to have a strong conflict of interest policy.  This information should not only be prominently displayed on websites and in other material but should be proactively sent to patient members on a regular basis.  Otherwise, these patient advocacy groups risk being viewed as what some of them have apparently become–shills for the drug and device companies.

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