Patient Advocacy Groups Aren’t Always What They Seem


From Recent studies have shown that well over half of patient advocacy groups accept money from drug, biotech, or medical device companies, and nearly 40 percent have a current or former corporate executive on their board. This article presents a brief list of strategies journalists and consumers can use to find out the degree to which a nonprofit has been influenced by the pharmaceutical industry.

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  1. This is a far, far more important issue than some people who are new to it all might realize.

    First of all, you start your advocacy group from the grassroots — real people with real issues.

    Then you get it organized and up and running. Success!

    Then, all of a sudden, when you are beginning to change the conversation for real, but maybe you’re still struggling to get those dollars to keep the thing going — like peer support agencies — you hear from a major pharmaceutical company or some other vested interest that offers to fund you.

    You accept the funding.

    What has now happened is that you have a board that is worried about whether they are performing up the expectations of the people from whom they are receiving their funding. All of a sudden, peers who are working in support are no longer encouraged to speak their minds all the time against drugs. All of a sudden, there is no longer a drive towards independent thinking in the organization. The organization is thinking about the source of its funding, and keeping that source happy with what it is doing.

    And this is how grassroots movements are co-opted: taken over by the organizations (drug companies, etc) that come in to fund them.

    The next thing you know, the organization no longer serves its original purpose. In fact, as it falls further and further away from that purpose, it starts to die. People are no longer motivated to come, people don’t want to come any more. Those peer support “professionals” no longer represent anyone. And what happens then?

    The pharmaceutical company sees that it has destroyed your organization quite successfully, and it stops funding you. And one more honest initiative has now been laid down by the side of the highway, as another piece of mental health roadkill. Congratulations! You’ve just been played.

    That’s how it works, folks. Never, ever accept money from any corporation who is outside your organization. It will destroy you. Accept only money from individual donors, or from people who have no agenda. That is the only way you can take money and not have it affect you. And as soon as you feel the money affecting you: get rid of it. Get rid of it, or it will destroy what you have worked so hard to build. That is what has destroyed the peer movement for the last 40 years, and it is what is destroying it now. Get rid of the donors, and fight through on your own. It’s the only way you will survive.


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