Thursday, April 9, 2009

NAMI exposed: the drug money behind this supposedly grassroots group

Earlier this week, Senator Charles Grassley announced a probe into the nation's largest advocacy group for people with mental illness, the National Alliance for Mental Illness, asking the nonprofit group to disclose the funding it has received in recent years from the drug industry. The fact that NAMI is heavily dependent on drug company money is old news, but Grassley's investigation, first reported in Bloomberg News, may shed a welcome spotlight on an lobbying organization that masquerades as grassroots.

In Side Effects, I reveal that drug company contributions have always been a substantial portion of NAMI's revenues. I also tell the story of how Jim McNulty, president of NAMI from 2002 to 2004, failed to disclose the fact that he was being paid thousands of dollars from drug makers for promoting their products to NAMI members and others at various speaking engagements. In a particularly intriguing twist, McNulty laundered this drug company money through a state chapter of NAMI.

This is how the scheme worked, according to McNulty himself and others in the know. He would be paid thousands of dollars to speak about the benefits of various antidepressants -- McNulty himself suffered from depression -- and rather than pay him directly, companies such as Eli Lilly, the maker of Prozac, Pfizer, the maker of Zoloft, and GlaxoSmithKline, which made Paxil, would give his speaking fees to the Rhode Island chapter of NAMI, which would then cut McNulty a check. When I asked McNulty why he was paid this way, he said, "Paperwork. It was simpler that way."

McNulty, of course, never disclosed these conflicts to his constituents or to the NIH (which appointed him to sit on influential advisory boards that rendered opinions about the safety and efficacy of the drugs he was being paid to promote).

NAMI continues to receive hefty contributions from the drug industry but it no longer reveals the specific donors in its annual report, published online. So Grassley's team has asked the organization to disclose the specifics of its funding so that people with mental illness and their families can see for themselves how conflicted this advocacy group is. At FDA hearings over the years held to examine the safety and effectiveness of antidepressants like Prozac and Paxil, NAMI was always quick to come to the defense of these drugs. And NAMI opposed the black box warnings the FDA required drug makers to put on the labels of antidepressants in 2004 about their increased risk of suicidal thoughts and behaviors. Now that Grassley's team is looking into NAMI's books, perhaps the group's members -- people with mental illness and their families -- will cast a more skeptical eye on its credibility.


Dan said...

NAMI claims to be a grassroots non-profit organization that assertively recommends evidence-based practices regarding mental illness.

Perhaps most concerning is that NAMI claims to be an 'advocacy' organization.

Perhaps difficult to fully define, an advocacy group has the objective of developing a culture of support for those with, in this case, mental illness.

In addition, an advocacy organization actively supports a cause or idea that is intended to benefit those they speak for who are not able to do so themselves effectively.

Most mental health advocacy groups aside from NAMI clearly do not recommend the frequent utilization of psychotropic pharmaceuticals- due to the well-known adverse effects of such medications. In fact, many state rather overtly to avoid certain drugs due to what is known about them that are prescribed for various mental health conditions.

NAMI falsely states that they recognize the concepts of mental health recovery, and encourage 'services' be accessible to such patients affected with mental issues.

Yet these services are, apparently, determined by NAMI, and they educate others about the services they need,which include dangerous psychotropic drugs.

The FDA also receives half of their budget from the pharmaceutical industry. The FDA considers members of this industry, 'clients'. This is rather frightening. NAMI is no different.

The FDA is absolutely not an advocate of public health, or concern for the citizens of the United States. In my opinion, such advocacy groups that are not such as NAMI should be forced to cease to exist.

Monica Cassani said...

great detailed info here Alison,

Ben Hansen said...

An Open Letter to Senator Charles Grassley of Iowa

Dear Senator Grassley,

Thank you for investigating NAMI (National Alliance on Mental Illness).

Please investigate Mental Health America, CHADD, TeenScreen, and National Depression Screening Day too. They’re drug industry front groups just like NAMI.


The entire staff at the Institute for Nearly Genuine Research

Claudia Wallis said...

Fascinating. Your blog is terrific. I suspect that most families who participate in NAMI have no idea about these conflicts of interest.

Stan said...

Dear Alison Bass:

Nice to find this blog and kudos for your writing and book.

This is a little bit on topic and a lot trivial;

I was a little taken back when I watched a Fox TV "House" episode; when it ended with a nice pitch for NAMI. Fox Network or this Emmy Winning Show were actual selling/hawking t-shirts for NAMI.

I really liked this show and found it entertaining; but now they are a NAMI sponsor I may have to reconsider my limited TV viewing time.

NAMI has never been a patients advocate organization or worked to help those with deemed and labeled altered constitution.

This has always been, and always will be a "you better take your meds or you will die" type of organization; as well as a public relations and marketing front for Big Pharma.

Yours Truly,

seabird10 said...

Alison, thanks so much for this article and your whole blog. I found it thanks to Vera Hassner Sharov's AHRP email list.

When I was in grad school we had a guest panel one day in our psychopathology class -- one panelist was a member of NAMI in the community, and one a very healthy sounding "mentally ill" person (not related to the NAMI member). I'll never forget their discussion, and from that day on I have been very leery of NAMI.

Over my years in practice (community mental health and later private practice), I've had several other contacts with NAMI members or NAMI publications, and I still have a very negative impression. I'm kind of in the same camp with Stan who commented above with respect to NAMI. I personally have experienced members I've met as somewhat controlling and not at all open to hearing the actual experience their relative was having with their own states of mind. This is not to say any of them were hateful or not in a great deal of pain themselves over the family situation. But for whatever reason, they had all bought into the stories they were being fed by an increasingly medicalized version of mental and emotional illness (with no "health" in sight), and tended to relate to their relatives' situations with a totally misinterpreted "tough love" that was anything but compassionate.

I was fortunate enough to find Peter Breggin's work as well as a good supervisor early on in my career. So many in my profession, sad to say, end up being conned by the Dark Side of the mental health farce. I am glad that a lot of the baloney in medicine, psychiatry and Big Pharma is finally being exposed. Thanks again for your efforts to shine the light on some of it.

HOBO said...

I am a consumer in Orange County CA. NAMI braved me into participate in a lab testing place where I took medications for a year. I got paid $50 per monthly visit. At first I felt alright, in fact I liked the effects. I lost weight and smoked less, but then after a year they discontinued the medication, just like that with no notice or anything. I lost it...hit the streets again...and became very wight returned with major force...almost 100 pounds in 4 whole body swallowed and..I went back to NAMI several times for support, then they never helped me.. they ignored me and finally one day..they practically pushed me out from their office. Please investigate those LABS. I know from other peers that LABS are part of the pharmaceutical companies and NAMI gets money because when I went to that LAB they needed from me a paper signed by NAMI. Thank you

beanachtai said...

Thank you so much! I sought support from NAMI, to help me cope, with my sons mental illness. Their 12 week course began with 2 instructors suggesting that as family members of people with mental illness, we ALL should, " consider taking anti-depressants." I too believed they were grass-roots, which is what they state themselves to be on their web-site. I happened to notice the tiny print on the binders they distributed, were the names of pharma-corps.... My dear child (at 6 years) was put on ritalin, after his fathers death...I KNEW grief did not cause ADD, but was too intimidated by the authority of the doctor to refuse her...over the next 11 years, my poor son was put on endless combinations of drugs, at times on 14 pills a day! He was institutionalized for 3 full years, and was hospitalized repeatedly for bizarre, violent, erratic, and at times suicidal behaviors! I just happened to stumble upon "The Rx Generation", which should be required viewing for all consumers,and families of consumers. My son, got himself OFF of their poisons at 17, and his behaviors IMPROVED not WORSENED. But I see strong evidence that their drugs did permanent damage to him! What "Dr." could give a child 14 pills a day? THIS IS CRIMINAL BEHAVIOR! How could they have overdosed my son every day....When I heard Eli-Lilly or Smith-Glaxco, were sued for billions for giving kick-backs to "Doctors" (Madonna tickets and trips) for PUSHING their pills...well...its just too much! They destroyed my child...They destroyed his childhood...They destroyed my life and shattered my heart.....JUSTICE! JUSTICE! JUSTICE! JUSTICE! JUSTICE!