Does the National Alliance on Mental Illness represent seriously mentally ill?

Pete Earley, author of Crazy, one of the best books on mental illness, recently blogged on the issue of whether pharmaceutical money drives the agenda of the National Alliance on Mental Illness (NAMI). This is important, because NAMI bills itself as "the nation's largest grassroots organization dedicated to improving the lives of individuals and families with mental Illness". Pete says:

I don't believe for a second that drug makers control NAMI and, if I did, I would resign from it.

While I usually agree wholeheartedly with everything Pete Earley writes, as a former NAMI board member, I do think pharmaceutical money controls NAMI and I don't think he should resign. Like all us NAMI members, he should work to change it. NAMI is the only hope we have, but we have to get it back on track.

I remember four insidious effects of pharmaceutical money:

  1. When Sandoz (ADR) marketed Clozaril, the first atypical antipsychotic, they tied buying the medicine to buying blood monitoring services from their subsidiary Caremark. This greatly inflated the price and made it harder to get. Everyone --but NAMI--was outraged. Medicare and states were refusing to pay for it. Hospitals wouldn't administer it. Attorney Generals were suing.The Wall St. Journal and NY Times reported on the problem. Yet NAMIs position throughout was "we need more information". Sandoz was a major NAMI funder.

  • When Eli Lilly the makers of the atypical antipsychotic Olanzapine came out with a 'scholarship program' (educational grant scholarships conditional on taking the drug), the NAMI membership was instantly revolted by what was in essence a bribe to take it (why not lower the price, rather than inflate it to pay for the bribe?). In addition, what would happen if you went off the med? Lose the scholarship? Dr. E. Fuller Torrey brought the concerns to the media's attention in the New York Times, in the same article, NAMI issued supporting communications. Eli Lilly was a NAMI contributer.
  • When NAMI was deluged with calls from their own members that Janssen's (JNJ) Respiridol caused dangerous weight gain ,it took the FDA to lead an investigation that NAMI wouldn't even tell them needed investigation. Janssen was a NAMI contributor.
  • When Tennessee's managed care program, TennCare,was introduced, members flooded NAMIs office with info it was a complete disaster. People were being kicked off the program, out of hospitals and had problem getting in in the first place. It was newspapers, not NAMI, that exposed the disaster, which continues today. Meanwhile, NAMI gave TennCare an award, articles in their newsletter, and lots of visibility. TennCare was a NAMI donor.
  • * * *

    But there is another effect that pharmaceutical money has had on NAMI that is even more profound and hurtful: It has caused unbridled mission-creep. It used to be (long time ago), that NAMI advocated for those with serious mental illness, and the Mental Health Association (America), advocated for all others. As a result of pharmaceutical and government funding that distinction no longer exists. No one advocates for the seriously ill.

    Funding is to blame:

    Once Pfizer (PFE), the makers of Zoloft (my drug of choice), Eli Lilly (LLY), the makers of Prozac and other meds for depression, anxiety, sleep disorders, etc started funding NAMI, NAMI's 'mission' broadened.

    Government money supplemented this pharmaceutical money to further drive mission creep. Money available for 'mental illness in children' has caused NAMI to jump on that bandwagon and now cover kids with 'learning disabilities' 'behavioral issues' 'ADHD', 'sadness', 'bad grades' etc. In fact, while science has shown there is no way to prevent schizophrenia, NAMI is engaged in 'prevention' education for 'at risk' children.

    In fact, NAMIs "message" is no longer that the "people with serious mental illness need help", the "new" message is "the mentally ill are just like you and me and with proper supports can become productive members of society". In fact, the seriously mentally ill (homeless, incarcerated or institutionalized) are not allowed to be shown in NAMI materials. Only the happy well need apply.

    For seven years, the NAMI board, would not consider a mechanism to develop a policy on involuntary treatment, much less develop the policy. Why? The consumertocracy representing those who are less seriously symptomatic (mission-creep), objected. The local NAMI eventually had to use a procedural process (go around the board and put it to a direct vote of the entire membership), to get something passed. The NAMI membership overwhelmingly supported this policy the NAMI board wouldn't even consider.

    NAMI should priortize implementation of this most important policy.

    Saving hospitals is another area. While psychiatric hospitals were being closed en-masse, during transinstitutionalization (the movement of people with mental illness from hospitals to jails) NAMI stood silent, only saying that the proceeds from sales of hospitals and savings from closure should be reinvested in the community. Like that happened. To NAMI's great credit, they have recently taken the lead in this issue by working to change the government policy responsible for hospital closures.

    What's the solution?

    One would be to reorient NAMI so it focuses on the seriously mentally ill. Someone suggested that that would be relatively easy, by forming a party to take over board which could be accomplished after two or three election cycles. I'm not so sure.

    Another would be to form a separate organization.

    I love NAMI, but there does need to be an organization that focuses on serious mental illness.

    Sorry, Pete.