Over the past few decades, hundreds of patient-advocacy organizations have emerged in the United States, promoting disease research and influencing legislation and FDA and health insurer policies. A new study has revealed that a large proportion of these organizations have funding or other connections with drug or medical device makers, but do not adequately disclose these connections.
The study, led by medical ethicists at the Perelman School of Medicine at the University of Pennsylvania and published in the New England Journal of Medicine, suggests that patient advocacy organizations should acknowledge industry connections.
Media reports have highlighted the fact that some industry-funded patient-advocacy organizations support the industry line on policy issues, for example by failing to support drug-price reform measures, and by pushing insurers to cover expensive drugs whose benefits to patients are questionable.
In the new study, the team examined websites and annual reports for 104 US-based patient-advocacy organizations with annual revenues of US$7.5 million or more.
Results showed that the vast majority received industry funding. More than 80% explicitly reported it, and most of the rest left open the possibility by providing no donor information. Only one of the 104 stated plainly that it did not accept industry funding.
Information on donations was typically provided in broad ranges, and in some cases not disclosed at all. But, among the 59 organizations that published donated amounts, 23 reported receiving at least $1 million annually.
The study revealed other connections to industry besides financial support. More than one-third of the reviewed organizations had one or more board members who were also company executives. In 12 of the organizations, the industry executive held a leadership position on the board. But only 12 of the patient-advocacy organizations had published policies addressing such institutional conflicts of interest.
"Our findings provide support for a new 'sunshine' law to oblige drug, device, and biotechnology companies to report the payments they make to patient organizations in the same way the must report payment to physicians and teaching hospitals," said lead author Matthew McCoy. "Greater transparency would allow citizens, researchers, policymakers, and others to assess conflicts of interest of patient-advocacy organizations in a way that is not currently possible, and would make it easier for patient-advocacy organizations that accept little or no industry support to differentiate themselves from those that are heavily dependent on such support."
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