The National Alliance on Mental Illness (NAMI) finds itself embroiled in controversy for its decision to invite medical journalist, Robert Whitaker to speak at its annual conference this past June. In a heart-wrenching blog post, a mother condemned both NAMI and Whitaker and accused them of having blood on their hands. The problems that arose from that presentation raised the question of how just how much attention society should pay to journalists who attempt to influence health policy and treatment.
What the mother describes is a family that struggled to get treatment and help for a son who was so psychotic that he disappeared for a year before returning filthy, emaciated, and barely able to talk. With effort and luck, the young man accepted treatment and recovered to the point where he was able to share his story with groups at NAMI meetings.
But then, the mother and son attended this year's NAMI convention and the talk by Whitaker on the selective use of antipsychotic medication. In the mother's words: "From the moment Mr. Whitaker's speech was over, my son became fixated on the idea medication was harmful." As a result, he stopped all medication and crashed. His psychosis is back and he is gone. The family has no idea where he is. I highly recommend that everyone read this mother's story as a synopsis cannot do justice to it and the many comments from other concerned parents that follow.
Whitaker is the author of Mad in America and Anatomy of an Epidemic, and a strong anti-medication spokesperson. He is, of course, entitled to his contrarian views but we have to remember that he is not a scientist. The best medical knowledge for the treatment of schizophrenia starts with antipsychotic medications that substantially reduce the risk of relapse.
Whitaker does not agree, and believes that the medication itself over the long term may induce changes in the brain and thus make people more biologically vulnerable to psychosis (slide 6 in his presentation). His beliefs have been criticized by psychiatrist, E Fuller Torrey, who wrote How Robert Whitaker Got it Wrong. Torrey is a highly esteemed (and controversial) researcher and clinical psychiatrist.
What Whitaker got right, according to Dr Torrey, is his criticism of the overly broad criteria for mental illnesses; the reckless prescribing of psychiatric drugs for children; and "the prostitution of many psychiatric leaders for the pharmaceutical industry". But, Torrey wrote, "When it came to schizophrenia and antipsychotic drugs, Whitaker got it mostly wrong."
As Torrey stated:
"Whitaker clearly believes that schizophrenia should be treated without medication if at all possible. However he fails to focus any attention on the fact that on any given day in the United States half of all individuals with schizophrenia, or about one million people, are not being treated. This is a huge natural experiment to test his thesis. Many of these individuals are found in public shelters, sleeping under bridges, in jails, and in prisons. If Whitaker had spent more time in these settings observing the outcome of this natural experiment, instead of delivering lectures on his vision of the impending antipsychotic apocalypse, he would have written a very different book."
Torrey claims that Whitaker "made so many errors [in his book that] it is difficult to know where to begin" to list them all.
In an attempt at damage control over this mother's blog, Katrina Gay, the National Director of Communications for NAMI, posted to it and stated that the "session led by journalist Robert Whitaker was intended to provide an overview of new, if controversial research. This speaker does not condemn the use of psychiatric medicine per se but presented some studies that favor more limited use of medications."
And here is what bothers me the most. There is a big problem with the idea that a journalist who is not a scientist is capable of providing new ideas for the more effective treatment of a disease and that NAMI thinks that it is OK to have him give a presentation. Well, in my opinion, he can't, nor should he.
I learned very early on as a medical journalist writing for the lay public that there are dangers in what we do regardless of the caveats we put on our writing. In the late 1980s I did an article for the Globe and Mail on a new surgical treatment that was being developed to cure near-sightedness (laser surgery now quite common). In my article, I mentioned correctly that the surgical strategy then in use could cause blindness.
That appeared on a Saturday and first thing Monday morning, I got a call from an ophthalmologist threatening to sue me and the Globe. Many of his patients had read the story and then called him to cancel their surgery so they could wait for the new experimental treatment. I had no idea that I had such influence and, of course, I should not but we do and we need to be careful. Because of that experience I've tried to be very careful when I write about new ideas, treatments, drugs or whatever. After all, like Whitaker, I am not a scientist.
Whitaker does not seem to have learned that he is a reporter with opinions and that those opinions are listened to by some very vulnerable people. And NAMI does not seem to realize that advances in medical knowledge are better left to those who spend their lives immersed in their complexity.
Pete Earley, who hosted this letter on his blog, reported after I finished drafting this, that within forty-eight hours after her son left home, his mother received a call from a social worker at a homeless shelter. Their son was there and had agreed to voluntarily admit himself to a hospital. NAMI officials have offered whatever help is required.
Earley, a journalist and father of a son with schizophrenia, is not as critical of Whittaker and his role in interpreting medical facts as I am. But, as a NAMI member himself, he found "the national board's decision to invite Mr. Whitaker perplexing and questionable" and he would have been hesitant to take his own son to the lecture. He blames NAMI and said the convention leadership and board failed in its primary responsibility to provide its members with tools that they needed to protect themselves and their loved ones.
We can't help how people interpret our ideas but we do need to be aware that controversial ideas can impact the vulnerable.