There's a disturbing truth about the groups that help patients

Drug companies are putting a lot of money into organisations that advocate on behalf of patients, raising questions about how much of an influence drugmakers might have over the groups.

Patient advocacy groups — for example, the American Heart Association or the American Cancer Society — are organisations that are in charge of representing the interests of patients and the people who care for them. The group might help fund research for new treatments, increase awareness for that particular disease, or lobby for legislation that might benefit people living with a particular disease.

And, according to a new report published Wednesday in the New England Journal of Medicine, eight in ten patient advocacy groups had received some level of industry funding.

Looking at groups had revenues over $US7.5 million, the report found that 86 of 104 (that’s 83%) had received some level of funding. Thirteen of the remaining 18 organisations didn’t disclose any donor information.

What’s more, 36% of the 104 groups had a drug, device or biotech executive on their boards, which means they had input on the focus of the group.

It does pose the question: how much can those groups push back against the groups that are funding them? And for groups advocating for treatments that have shaky data, how much is coming from the patients compared to how much is being pushed by the company behind the therapy?

“If you’re a policymaker and you want to hear from patients, there’s a danger if there’s an undisclosed or underdisclosed conflict of interest,” Matthew McCoy, one of the authors on the report told Kaiser Health News.

Industry groups funding patient advocacy groups isn’t particularly new, nor is it something that many of the organisations keep under wraps: The report found that 88 of the organisations disclosed their funding via their website or annual report.

But, compared to the transparency required of academics, which have to disclose when working on a study or presenting in public, the information about patient advocacy groups funding sources are still murky.

“Taken together, the ubiquity of industry support for patient-advocacy organisations, the variation in levels of support, and the limitations of the current disclosure practices of such organisations provide strong reasons in favour of creating a ‘sunshine’ law to cover industry payments to patient-advocacy organisations,” the researchers concluded.

Those laws might clear up where patient advocacy groups get their funding, and how it could have a role in the agendas they set.

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