Drugs Fund Patient Advocacy Groups

April 23, 2018
It seems that drug companies have maneuvered their way around the illegality of giving doctors gifts and trips to promote drugs by funding patient advocacy groups with a higher price tag than directly lobbying congress.

Years ago, I was asked to be on the board of a newly developed patient advocacy group sponsored by a group of rich women who claimed to be interested in educating patients about alternative health choices. I agreed on the condition that the group never take money from drug companies. Of   course, they decided they had to take money from drug companies. And of course I quit the group and have never trusted patient advocacy groups since.

People who take money from drug companies who claim there are no strings attached are incredibly naïve. Just like doctors and scientists who take drug money and claim they are unbiased. Or the FDA taking huge payments from drug companies to “oversee” drug research. Every study done on this sort of monetary relationship shows bias – it’s only human nature to not bite the hand that feeds you!

A Medscape article, “Patient Advocacy Groups Take in Millions From Drugmakers. Is There Payback?” explored this question in depth. The article noted that “Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new database logging 12,000 donations from large publicly traded drugmakers to such organizations. Unlike payments to doctors and lobbying expenses, companies do not have to report payments to the groups.”

Further investigation showed that “…donations to patient advocacy groups tallied for 2015 dwarfed the total amount the companies spent on federal lobbying. The 14 companies14 that contributed $116 million to patient advocacy groups reported only about $63 million in lobbying activities that same year.”

Why do drug companies pay so much to these groups? The article says that “some groups effectively supplement the work lobbyists perform, providing patients to testify on Capitol Hill and organizing letter-writing and social media campaigns that are beneficial to pharmaceutical companies.” That’s one reason.

One ethics professor was concerned that “The financial ties are troubling if they cause even one patient group to act in a way that’s ‘not fully representing the interest of its constituents.’” One concern is the cost of drugs that “Notably, such groups have been silent or slow to complain about high or escalating prices, a prime concern of patients.” It appears diabetes groups were the beneficiaries of millions of dollars – in spite of the skyrocketing costs of insulin.

The article goes on to say “When so many patient organizations are being influenced in this way, it can shift our whole approach to health policy, taking away from the interests of patients and towards the interests of industry. That’s not just a problem for the patients and caregivers that particular patient organizations serve; that’s a problem for everyone.”

So, why do you need to know about this and moreover, what are you going to do about it? There is nothing really that you can do except to realize the bias inherent in groups that are supported by drug companies. And the enormous influence they may have as you troll the Internet for information about your own health issues.

Carolyn Dean MD ND

The Doctor of the Future®

RESOURCES: Along the borders and in the links of my web site you can find my books, writings, and my call-in radio show. Email your questions to: questions@drcarolyndeanlive.com.

 

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