For the past several weeks, I have had an interesting and troubling email exchange with Dr. E. Fuller Torrey, perhaps the most controversial psychiatrist in America. He’s also one of the most influential.
It would be a mistake, however, to believe that Dr. Torrey’s impact has only been in promoting AOT legislation. He has been sounding alarm bells and criticizing our mental health system for decades. Among other things, he has founded two organizations. The Stanley Medical Research Institute is a nonprofit organization that supports research looking for the causes and treatment of schizophrenia and bipolar disorder. According to its webpage, it has given away more than $300 million since 1989 for research, mostly outside the U.S. The second group is the Treatment Advocacy Center which describes it’s purpose as “eliminating barriers to the timely and effective treatment of severe mental illness.” TAC’s main focus is pushing for passage of AOT laws.
I wrote about Dr. Torrey in my book. He’s a Magna Cum Laude undergraduate at Princeton, a medical doctor (McGill University) and an anthropologist (Stamford.) He also has worked in the Peace Corps as a physician, at the National Institutes of Mental Health, and as a professor. But his main occupation in recent years has been as a muckraker. In April 2001, my former colleague and friend, Peter Carlson, wrote a profile of Dr. Torrey for the Washington Post/L.A. Times that described the impact that his groundbreaking book, Surviving Schizophrenia, had in this country. Here’s an example.
In 1984, when Laurie Flynn walked in for her first day as executive director of the National Alliance on Mentally Illness, she found a pile of mailbags, all stuffed with letters.
Torrey had just published “Surviving Schizophrenia,” a guide for patients and their families. He appeared on Phil Donahue’s TV show, urging people seeking help to contact the fledgling group of fewer than 50,000 members. The result was this avalanche of mail.
“Nobody had ever said the word ‘schizophrenia’ on popular television, and people came out of the woodwork seeking help,” Flynn recalls. “For many years, mothers were told they were the cause of the problem, and here comes Fuller Torrey saying, ‘Wait a minute, this isn’t the family’s fault. These are brain diseases.’ Here was a psychiatrist saying, ‘I know what you’re going through because my sister has the problem.’ It’s hard to overemphasize what a hero he was back in the early days.”
Torrey donated the book’s royalties to NAMI and helped build the group into a powerful lobbying organization with more than 220,000 members. They lobbied together for the alliance’s agenda: Torrey, the verbal bomb-thrower; Flynn, the soft-spoken centrist. But their partnership collapsed in December 1999. That’s when the group published Torrey’s scathing attack on National Institute of Mental Health, in which he said the agency spent too little money for research on severe mental illnesses while funding studies on such topics as the mating habits of the eastern bluebird.
In addition to Surviving Schizophrenia, he has authored another dozen books. He was warning that our jails and prisons were becoming our new mental asylums long before I wrote CRAZY. His book, Nowhere to Go: The Tradgic Odysessy of the Homeless Mentally Ill appeared in 1989. Three years later, he wrote: Criminalizing the Serious Mentally Ill: The Abuse of Jails as Mental Hospitals.
I think it is unfortunate that his critics often attack him because of his strong opinions on AOT, dismissing his other works. Let me give you examples.
*When I finished CRAZY, I sent a copy to Mental Health America and explained that I wanted to do what I could to publicize how persons with mental disorders are being imprisoned. One of their public relations officers called me back and informed me that MHA would have nothing to do with my book or me because I had written about Dr. Torrey and TAC. The fact that I had dared to write about him was enough to get me blackballed. Ironically, a year later MHA gave me a media award.
*When it was recently suggested at a NAMI board meeting that Dr. Torrey be invited to speak at the group’s national convention, a board member said he would lead a boycott and walk out if Dr. Torrey was invited. He wasn’t. (A sad irony given what Dr. Torrey did to help launch NAMI.)
None of this has kept Dr. Torrey from speaking his mind. Which brings me to the point of this blog — finally. Regardless of whether your admire Dr. Torrey or detest him, there’s no arguing that his is an important voice. Not long ago, he wrote a blistering article — which is his style — in the National Review attacking the Substance Abuse and Mental Health Services Administration (SAMHSA). The article was entitled, Bureaucratic Insanity, and Dr. Torrey claimed persons with mental disorders would be better served if SAMHSA closed down.
I was surprised because some of the agency’s $3.6 billion dollar budget has gone to help fund programs that I support — such as grants for jail diversion programs and mental health courts. But Dr. Torrey claims that too much of SAMHSA’s budget is being spent on programs that might help people feel better about themselves, but do nothing to actually help treat their symptoms. He claims SAMHSA doesn’t fund enough programs that target persons with severe and persistent mental disorders, such as schzophrenia and bipolar disorder:
Judging by the just-released document “Leading Change: A Plan for SAMHSA’s Roles and Actions 2011–2014,” such individuals (the severely mentally ill) not only are not a priority for the organization, they do not even exist. Not once in the 41,804-word text of this three-year plan is either schizophrenia or bipolar disorder even mentioned. Instead, the nation’s mental-health ills are all subsumed under a vague category called “behavioral health problems.” Assuming this broad mandate has allowed SAMHSA to dabble widely and ignore the most serious disorders.
Years ago, Dr. Torrey made a similar charge against the National Institutes of Mental Health, accusing it of wasting millions on programs for the “worried well” – people who should be telling their problems to their “bartenders and hairdresses” not to psychiatrists. His attack helped force NIMH to change its priorities, especially under the leadership of its current director, Dr. Tom Insel. The article that Dr. Torrey wrote about SAMHSA is being circulated on Capitol Hill and has put SAMHSA on several budget cutters’ radar.
In an email exchange, Dr. Torrey wrote that he has been investigating where SAMHSA spends its money and he has found some interesting grants.
Mental Health America received $535,137 last year from SAMHSA, which made-up 19 percent of that group’s revenues. MHA is the largest mental health advocacy group founded by persons with mental disorders. NAMI, which is the largest grassroots mental health lobby group and was founded by parents, received $300,000 from SAMHSA. (I should point out that I am an active member of NAMI and make monthly contributions to it.)
Dr. Torrey reminded me that neither of his groups — the Stanley Medical Research Institute or TAC — accept government funds. Nor do they take money from drug companies. Dr. Torrey has a wealthy benefactor who helps bankroll both of his groups, in addition, to contributions from supporters.
Pharmaceutical companies are the largest source of revenue for both MHA and NAMI. The New York Times has published articles about how much funding drug companies give NAMI. In his email, Dr. Torrey sent me information about MHA.
The MHA 990 lists Pfizer ($397,375), AstraZeneca ($25,000), Sunovion ($83,600), Eli Lilly ($86,000), Novartis ($60,000), and Forest Pharmaceuticals ($60,000) as 2010 contributors. Who is Sunovion, you may ask? It is a small drug company that got FDA approval last year to market lurasidone (Latuda), another me-too second-generation antipsychotic for which there is not a shred of evidence that it is better in any way than the many already on the market. Sunovion contributes to MHA to protect their ability to sell their product to state Medicaid systems at $600+ per patient per month rather than the generic risperidone or olanzapine at one-sixth the cost. If any state legislature or state mental health authority raises a question about why the states should pay for this drug or not add it to its formulary, MHA (and NAMI) will immediately produce five pathetic-looking patients who will testify that Latuda is the best drug they have ever taken and that it saved their lives. Similarly, for Pfizer and Geodon, AstraZeneca and Seroquel, etc. MHA and NAMI are drug salesmen in the disguise of nonprofits.
These are harsh words from Dr. Torrey who once traveled the nation, without charging a fee, helping organize NAMI chapters and fire-up its members.
In his email, Dr. Torrey warned that revenues for MHA and NAMI have both decreased because of unfavorable publicity about their contributions and pressure from members of congress. MHA’s revenues went from $3 million to $2.1 million in 2010. NAMI’s revenues dropped from $9.6 million to $7.1 million. With the drug companies pulling back, MHA and NAMI are turning more and more to SAMHSA for help.
The question that Dr. Torrey raised is whether SAMHSA funds come with strings. He claims they do. MHA and NAMI must adhere and gear their programs to SAMHSA’s priorities or risk losing dollars. (I should add that SAMHSA has had a strong bias against AOT laws, which helps explain why Dr. Torrey dislikes its leadership.)
All of this is troubling to me. As the parent of a son with a severe mental disorder, I want desperately for drug companies to develop new drugs and search for cures. I certainly don’t automatically view them or their employes with suspicion. I want MHA and NAMI to offer the tremendous programs that help our loved ones and us, such as NAMI’s Family-to-Family and In Our Own Voice programs, which might never have been developed without financial contributions from drug companies.
But obviously, I don’t want the pharmacuetical industry running NAMI anymore than I want SAMHSA setting its priorities. That’s the job of its leaders and members.
A few months ago, I defended NAMI’s policy of accepting drug money in a blog. At last count, there were 17 comments. I explained that I didn’t think there was anything wrong with NAMI pocketing the cash as long as it fully disclosed its revenue sources and made certain there was a wall between donations and policy. I compared the situation to how newspapers accept advertising but keep their editorial staff and business deparatment’s completely separate.
My friend, D. J. Jaffe found my rationalization naive. He and others felt I had let my devotion to NAMI cloud my vision.
So I’d like to ask your opinion. Is it simplistic to think that MHA and NAMI can accept money from the drug industry and from SAMHSA and not be influenced? And if you think so, which might be worse — influence from drug companies or SAMHSA? Should a federal agency be handing out tax dollars to a nonprofit group that lobbies the government? Can MHA and NAMI survive without drug company and/or government funds?
These are questions well worth asking.