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Research suggests influence of industry funding upon patient advocacy groups

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Research suggests influence of industry funding upon patient advocacy groups

Slightly more than half of the leaders of various patient advocacy organizations believe that their organization's conflict of interest policies are "very good" and about 8% said they perceived pressure "to conform their positions to the interests of corporate donors," according to a Jan. 17 study published in JAMA Internal Medicine.

Out of 240 organizations that received industry funding, 105 received less than $9,999 in industry funding, while 21 received more than $1 million from the biopharmaceutical or medical device industry. Meanwhile, one-third of the groups said they did not receive industry funding, and about 14% of the leaders surveyed said they had declined funding due to conflict of interest concerns.

The groups surveyed were randomly selected from a sample of more than 7,800 patient-advocacy organizations. The researchers acknowledged that their study is based on self-reported data, making it subject to nonresponse and social desirability bias.

Another Jan. 17 study in the same journal found that opposition to opioid prescription guidelines developed by the federal U.S. Centers for Disease Control and Prevention was significantly more common among organizations that received funding from opioid manufacturers than those that did not receive funding from such companies. The topic is a particularly sensitive one due to the opioid-abuse epidemic that contributes to thousands of fatalities in the U.S.

"The very way we all think about disease — and the best ways to research, define, prevent, and treat it — is being subtly distorted because so many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximize markets for drugs and devices," wrote Ray Moynihan of the Centre for Research in Evidence-Based Practice at Bond University in Queensland, Australia, and Lisa Bero of the University of Sydney in an accompanying editorial.

The authors pointed to a drug industry-funded advocacy campaign dubbed, "Even the Score," which they said helped secure FDA approval of Valeant Pharmaceuticals International Inc.'s Addyi for female hypoactive sexual desire disorder after several regulatory setbacks, including a prior FDA rejection.

Typically, industry funding exerts its influence in more subtle ways, the editorialists wrote: "There is no doubt that industry funding can distort the patient voice. For the individual groups, the influence of a company sponsor is often invisible. Rarely does it lead to a clumsy intervention to change a group’s public position, but rather creates a routine awareness among sponsored groups that one doesn't bite the hand that feeds it."