Grass Roots?

September 22, 2009 at 11:28 am 3 comments

The National Alliance on Mental Illness (NAMI) calls itself the “nation’s largest grassroots mental health organization.” If they are a grassroots organization, then the soil is tainted and the land bought and paid for — largely by pharmaceutical companies. Over half of their funding in the just the past five years has been in the form of pharma money. That’s several million dollars. Their list of major contributors reads like a who’s who of psych drug peddlers — all of whom have their own ethics problems lately, including everything from paying doctors to promote for them to lying about adverse clinical trials findings and illegally promoting the off label drugging of children.

The latest glimpse into the NAMI’s affair with pharma is the report that, in light of the fact the drug companies can’t directly market their product for off-label use, Pfizer paid NAMI  hundreds of thousand of dollars in exchange for their promotion of Geodon, an atypical antipsychotic, for use on children and the elderly, for which there is no FDA approval and the dreaded black box warning in some cases. All of this is also in conflict with the group’s own professed policy against promoting drugs. When more than half of your money comes from drug manufacturers, you tend to keep it a bit less obvious.

”Drug manufacturers have developed relationships with front organizations – industry-funded grass-roots, consumer advocacy, research and educational organizations whose primary goal is to promote marketing, influence regulations or advance other industry interests,” according to the suit.

The Arlington, Va.-based National Alliance for the Mentally Ill… has received at least $1.3 million from Pfizer over the years, according to the suit.

What’s more, its former president, James McNulty, during his time as NAMI’s leader, “received thousands of dollars for regularly speaking on behalf of Pfizer and other drug makers,” the suit said. “McNulty’s relationship with Pfizer was particularly cozy,” the suit said, and the group’s Web site “goes so far as to promote the off-label use of Geodon in children and the elderly, as well as for long-term use in the treatment of bipolar disease.”

The promotion of Geodon goes against the group’s stated policy of not endorsing products, according to the suit. What’s more, the suit said, such uses of the drug have not been approved by the FDA, and the prescription of Geodon for dementia has received a black-box warning from the agency.

It may seem to some as though it is of little import but NAMI isn’t a just some group out to offer help and reduce stigma related to mental illness, although that is part of their claim. When government policy is enacted, when information is needed, when decisions are made about the treatment of people with mental health diagnoses, NAMI has a seat at the table — so much so that they refer to themselves as “the preeminent voice on Capitol Hill and in state houses across the country for the millions of Americans living with serious mental illness.” They are the loudest voice claiming to come from the corner of those diagnosed as mentally ill and often the only voice that is sought. They’ve presented themselves as an authority on mental illness and the buying public in this arena as with any other is desperately seeking an authority.

…  the off-label marketing of Geodon was all about money. And it may have paid off: According to the suit, initial sales of Geodon eight years ago were a disappointing $150 million, leading the company to offer sales incentives to boost the drug to the $1 billion blockbuster category, which it reached last year for the first time – three years behind schedule.

”Pfizer has engaged in a deliberate pattern of false and misleading promotion,” the suit said. “Off-label promotion of Geodon … became ingrained in the sales force and Pfizer management.”

It is harmful enough when drug manufacturers are more about profits than actually offering tools for care. It’s unconscionable when doctors and so-called grassroots groups are doing it, all while claiming to be a voice for the mentally ill. Dangerous things happen when a cash fueled machine teams up with the smiling face of an organization banded together to speak for you — and over you.

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3 Comments

  • 1. dogkisses  |  October 4, 2009 at 1:15 pm

    Hi, just came across your blog. I used to be involved with NAMI since my son was diagnosed with schizophrenia in 2003. I have not been for two years now. There were some of the nicest people in the world there and I miss that, but I felt like a misfit. I felt that I had to stifle my true opinions and thoughts at times if they went against the notion, that without an antipychotic any person with schizophrenia should probably be locked up, forever if necessary or as I was told many times, “until he gets so sick of the institution that he’ll do anything to get out — even take an antipsychotic.” So, now I am alone. A widow and my family doesn’t understand and doctors want to push pills and lock him up and other doctors say don’t take those pills because of a liver disease in his dad’s family and on and on!
    I saw where you said you are very busy but if you have time you can read on my blog about my son getting tasered. I also wrote about first times in our children’s lives. I have many articles on what I have gone through and faced as a mother of someone who has suffered not only from this disease, but a great deal from my initial ignorance, social medicine and the holes in our mental health system.
    I am http://dogkisses.wordpress.com/
    Thanks, I enjoyed what I read here and hope to find my way back.

    • 2. dogkisses  |  October 4, 2009 at 1:17 pm

      PS I just haven’t published all of my articles yet, forgot to say that, lol.
      You might find the one on “Ask for help and you might get Tasered,” interesting.
      Thanks again.

    • 3. abellve  |  October 6, 2009 at 9:39 am

      Thank you. I am glad you found your way here. Currently, there are some resources, though never enough, for support and care outside of the notion that powerful drugs are the only option for care. They may not have the corporate backing to be heard above the crowd but they are out there. Check out the links at the bottom of my page for a start. I will be visiting your blog and I wish you both well. Also — Check out Safe Harbor as they have a database of care options and providers outside of the bio/medical model. Just an idea but one often leads to another. I hope you find ideas — anywhere — that work.


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