SAMHSA, the Alternatives Conference, and the Story of an Opportunity Lost
The Medication Taboo in the Land of Free Speech
Posted Oct 06, 2010
In the last chapter of my book Anatomy of an Epidemic, I noted that if our society is going to stem the epidemic of disabling mental illness that has erupted during the past twenty years, then it needs to have an honest discussion about what is truly known about the biological causes of psychiatric disorders, and an honest discussion about how the medications affect the long-term course of those disorders. The illuminating powers of science could work their usual magic. But that is a discussion that many in our society don't want to have, and my recent experience at the Alternatives conference in Anaheim illustrates that point, and reveals too why this is such a loss.
The Background to the "Controversy"
In Anatomy of an Epidemic, I basically followed a tried-and-true journalistic path. I followed the evidence. I looked at how the chemical imbalance theory of mental disorders arose, how it was investigated, and how it never panned out. As Kenneth Kendler, coeditor in chief of Psychological Medicine wrote in 2005, "We have hunted for big simple neurochemical explanations for psychiatric disorders and have not found them." Then I investigated how psychiatric medications affect the long-term course of four major mental disorders (schizophrenia, anxiety, depression, and bipolar illness), and that involves doing an exhaustive survey of studies conducted (or funded) by the National Institute of Mental Health, the World Health Organization, and foreign governments for the past 50 years.
Now, when you do that, you discover a story of science quite at odds with our societal belief that psychiatric medications fix chemical imbalances in the brain and that they have dramatically improved long-term outcomes. And when you write up this history of science, as I did in Anatomy of an Epidemic, you do become unpopular in certain circles.
In July, the National Empowerment Center, which is a peer-run advocacy organization, invited me to be a keynote speaker at the Alternatives Conference. The National Empowerment Center is funded by the Substance Abuse and Mental Health Services Administration (SAMHSA), and SAMHSA, I was told, had signed off on having me speak. However, once the National Empowerment Center announced that I would be speaking at the conference, SAMHSA quickly rescinded the invitation. In response, MindFreedom, which is an activist group, organized a protest via the Internet, asking people to contact both SAMSHA and the White House, and within 36 hours, I had been publicly re-invited to speak.
What people following this "controversy" didn't know was that my re-invitation came with considerable strings attached. I had originally been scheduled to give a workshop in addition to a keynote, but the workshop was still cancelled. (I had planned to speak about a Finnish program for treating psychotic patients that was producing excellent results, and the prescribing of exercise as a treatment for depression, which is now being done in Britain.) The other condition was this: The National Empowerment Center was required to recruit a psychiatrist, from a list of names provided by SAMHSA, to "rebut" my keynote. And I would not be given an opportunity to respond to that rebuttal.
Now, if SAMSHA had wanted to organize a debate following my talk, that would have been terrific. But this was a setup that SAMHSA seemed to have torn from the pages of a 25-year old Soviet Union handbook: invite dissident speaker and then denounce him! Normally, I wouldn't have accepted such an arrangement, but I had been quite moved and humbled by the protest that had led to my "reinvitation," and so I figured, what the heck. It wasn't every day that you got to sit in a ballroom with more than 1,000 people and hear your work denounced.
As the conference approached, a new controversy reared its head. Will Hall, who many years ago was given a diagnosis of "schizoaffective disorder/schizophrenia," and who today works as a therapist (having been off psychiatric medications for 17 years), had planned to give a workshop that included discussing a "harm-reduction" approach to withdrawing from psychiatric medications. Several years ago, Hall had written a book on the subject, which had been published by two advocacy groups, The Freedom Center and the Icarus Project, and given that there are few books written by professionals on the circuit, his had proven to be quite popular. But a few days before the conference began, Hall was told that the printed description of his workshop in the conference brochure had been changed to remove any mention about "coming off drugs." Hall announced that he couldn't accept such censorship, a new protest erupted, and then he was told that the offending words could in fact be mentioned in an updated description that would be added to the conference brochure.
And all this occurred before an alternatives conference.
Friday, October 1
On Friday morning, I was given about 45 minutes to speak, and after I gave a brief overview of Anatomy of an Epidemic, I spoke at greater length about this question: Is it true that people diagnosed with schizophrenia (or other psychotic disorders) need to be on antipsychotic medication all their lives? There is a fairly long line of studies dating back to the 1960s that bear on this question, and the conclusion to be drawn is this: If psychiatry wants to maximize long-term outcomes, it needs to use antipsychotic medications in a selective, limited manner. Time and time again, the studies showed that there is a large subgroup of patients that would fare better if they were never put on the drugs in the first place, or if they were maintained on the drugs for only a short while.
The beauty of this particular story of science is that it concludes with a description of how western Lapland, in northern Finland, started using antipsychotic medications in this manner in 1992, and today their psychotic patients enjoy the best long-term outcomes in the western world. Five years after a first psychotic episode, eighty percent of their patients are either back in school or working. About one-third of the patients have been exposed to antipsychotics during this period, and about twenty percent end up taking the medication regularly. And what I like most about this success story is that it cannot be viewed, in any way, as an "anti-medication" story. It's a "best-practices" story.
Most of the audience understood this to be a "good news" tale, with science telling us of a therapeutic path that led to high recovery rates. And imagine if the program, at this national conference, had been structured to have psychiatrists (or other providers) discuss the talk I had just given. We could have spoken about whether a similar therapeutic approach could ever be tried here, and with representatives from SAMHSA there, perhaps this possibility could even have leapt onto a national agenda. This could have been a moment for transformative change in the treatment of first-episode psychosis in this country, a change designed to put young people back onto a path of real recovery, rather than down a path that led all too often to chronicity and disability. But unfortunately, in that Hyatt Regency ballroom, a much different process was underway. Several SAMHSA officials were nervously huddled with the psychiatrist, Mark Ragins, who had been selected to rebut my talk, apparently with a sense of urgency that he effectively counter what I had said. No good news allowed!
When Dr. Ragins took the stage at lunchtime, he was remarkably candid. He was here because SAMHSA wouldn't let me speak unless a psychiatrist had a chance to rebut what I had said. This, of course, was startling news to most in the audience, as few had ever been to a conference where a second keynote speaker was brought in to discredit the first.
There was, however, no real discussion by Dr. Ragins of the talk I had given, or the issues brought up in Anatomy of an Epidemic. Instead, Dr. Ragins used this metaphor to criticize Anatomy: In the book, he said, I had provided readers with a "compelling picture" of a "close-up of a car accident," but "we have to widen our view to decide if freeways should be torn down." Dr. Ragins then discussed other factors besides medication that might be causing the astonishing rise in the number of disabled mentally ill in our society, such as the fact that once people are on SSI or SSDI, there is a financial disincentive to return to work (which I agree is a factor.) Finally, in apparent reference to the many studies I cited in the book that had found that medicated patients have worse long-term outcomes than the off-medication group, he said:
"Medical interventions are always correlated with worse (long-term) problems . . . It is likely that all interventions ‘done to' someone to give them help or take care of them will have short-term benefits that wane over time and may well become long-term negatives."
I still am not quite sure how that was supposed to be a "rebuttal" to Anatomy of an Epidemic. But that is how it was being pitched, and then when Dr. Ragins detailed some of his thoughts on what promoted long-term recovery -- "Love other people, family, partners, kids" was one of the things he advised -- I could only think: Am I supposed to be against this? Indeed, I had the feeling that if Dr. Ragins and I had been on a panel together, we would have found much common ground, and that he might have thought that there was considerable merit to the Western Lapland approach. But the chance to have that productive discussion had been lost.
During the conference, D. J. Jaffe, who has close ties to the National Alliance on Mental Illness, having served on its national board of directors, wrote a blog about the conference for The Huffington Post, describing it as a waste of taxpayer money. My presence there, he argued, was evidence of why this was so. The keynote speaker, Jaffe said, had written that "antipsychotic drugs do not fix any known brain abnormality nor do they put brain chemistry back into balance," and readers were left to understand that, given that everybody knew that mental disorders were caused by chemical imbalances, I was a bit of a loony-tune.
So what was the real purpose of this blog? NAMI is a powerful political group, heavily funded by pharmaceutical companies, and in my opinion, Jaffe was delivering a warning. He was telling the National Empowerment Center and other consumer groups that they risked losing their funding if they did not, in the future, march in lockstep with psychiatry's official story, which is that mental disorders are known brain illnesses, and that the drugs are like "insulin for diabetes." No more invitation by the National Empowerment Center to speakers who would say otherwise.
At such moments, I have to confess that I begin to lose all hope. It seems quite impossible that our society will ever be able to have a thoughtful, honest discussion about what is truly known about mental disorders, and about the merits of psychiatric medications. The forces lined up against such a discussion are simply too great.