Story-telling in the Age of Corporate Medicine (or more on being called an AIDS denier)
As a journalist, I long have been fascinated by reporting on the storytelling forces within American medicine that create societal understanding of the merits of its treatments. I write about this in my new book, Anatomy of an Epidemic, and investigate whether the story told by American psychiatry about mental disorders and its drugs—i.e. that they are safe and effective agents that fix chemical imbalances in the brain—is consistent with the underlying science. In other words, I investigate whether the American public is being told an honest story, or one that serves the financial interests of psychiatry and the makers of the drugs.
Now my book was released on Tuesday, April 13, and the next day a review appeared in the Boston Globe, written by Dennis Rosen, an instructor in pediatrics at Harvard Medical School, that, upon close examination, neatly illustrates the story-telling process that I write about in the book.
We can look at the review step by step.
1. The theme of my book
Dr. Rosen opens his review by writing that “in Anatomy of an Epidemic, Whitaker presents his theory that the dramatic increase in mental illness in the United States since World War II is the direct result of the medicines psychiatrists have been prescribing to treat it.”
Now that, of course, is not my theory. What the book does is explore a medical puzzle. Here’s how I set it up in the opening chapter: “We know that many people are helped by psychiatric medications. We know that many people stabilize well on them and will personally attest to how the drugs have helped them lead normal lives.” Yet, during the past 20 years, a period during which our society has embraced the use of psychiatric medications, the number of people on government disability due to mental illness has tripled, from 1.25 million to 4 million. And so I ask this question, specifically noting that it is heretical in kind: “Could our drug-based paradigm of care, in some unforeseen way, be fueling this modern-day plague?”
Dr. Rosen’s mistaken description of my “theory” serves three purposes. First, it positions the book in the reader’s mind as an “anti-med” screed. Second, it presents the premise as nonsensical (I can’t even figure out what he means.) Third, he has successfully hidden the very data—the disability numbers—that might make readers scratch their heads and wonder, yes, what is going on.
2. My presentation of “data” in the book.
Dr. Rosen writes: “Whitaker cites studies showing better outcomes for patients with depression or schizophrenia who have come off their medications than for those who have stayed on them, but doesn’t consider the possibility that this may be because those with milder disease recovered and no longer needed medications, while those who were sicker to begin with simply could not do without them.”
Now, in order to investigate the medical puzzle described above, I basically go through the history of the outcomes literature for four disorders: schizophrenia, anxiety, depression and bipolar illness. The relevant data comes in many forms, and one form is “observational studies.” In those studies, researchers simply follow groups of patients with a certain diagnosis for extended periods, and they report on whether the outcomes are better for those on medication or off medication. These are the studies that I believe Dr. Rosen is referring to in his review, and when I introduce this type of research (in a section on depression), I explicitly note: “The caveat with the naturalistic studies is that the unmedicated cohort, at the moment of initial diagnosis, may not be as depressed as those who go on drugs. Furthermore, those who eschew drugs may also have a greater ‘inner resilience.’ ”
Once again, Dr. Rosen’s description of how I present data in the book serves a purpose. By putting all of the data that I report on into this one “observational” category, and then stating (falsely) that “I don’t consider the possibility” that the unmedicated cohort wasn’t as sick to start with, Dr. Rosen says to the reader: see this Robert Whitaker is biased and misrepresenting the limitations of the studies.
3. My presentation of patient stories in the book
Next, Dr. Rosen writes: “He also includes the stories of individual patients, all of whom fared poorly on psychiatric medications and did better after coming off them.”
Here’s the truth. I initially present patient stories in chapter two, and I feature four stories in particular. The very first patient presented in the book is a woman who regularly crashed when she tried to go off her antipsychotic medication, and has stabilized very well on Risperdal, an atypical antipsychotic. I tell of how she and her family felt she was “saved” by that drug. The third story (of the initial four) also tells of a woman who, after years of hospitalizations for depression and mania, has stabilized well on lithium, and is now leading a fulfilled life.
It’s easy to see why Dr. Rosen misrepresents the patient stories. By stating that I only write of patients who fared poorly on psychiatric medications and did better after coming off them, he is once again reminding the reader that this is an anti-medicine screed, that I am biased, and that I rely on cherry-picking my stories to prove a point.
4. My description of the importance of “anecdotes” in evidence-based medicine
Dr. Rosen, having opened up the question of my use of patient stories, then describes one story in particular, which is about a young girl who was prescribed a tricyclic for a bed-wetting problem, an initial exposure to medication that led to a very tragic end. Dr. Rosen writes: “Many children are treated with tricyclics for bed-wetting and the vast majority do fine. A single case does not prove the rule.”
Dr. Rosen, of course, is correct that the “single case does not prove the rule.” That is why, in the second chapter, before I tell the four patient stories, I write this: “In medicine, the personal stories of patients diagnosed with a disease are known as ‘case studies,’ and it is understood that these anecdotal accounts, while they might provide insight into a disease and the treatments for it, cannot prove whether a treatment works. Only scientific studies that look at outcomes in the aggregate can do that, and even then the picture that emerges is often a cloudy one. The reason that anecdotal accounts can’t provide such proof is that people may have widely varying reactions to medical treatment, and that is particularly true in psychiatry.”
By stating that “a single case does not prove the rule and here lies the basic problem of he book,” Dr. Rosen is continuing to hammer home the point that this is a book written by an amateur, who doesn’t know the first thing about “evidence-based” medicine.
5. My apparent “concession” that there is not evidence on the long-term merits of psychiatric medications to make any valid conclusions
As he begins his summation of the book, Dr. Rosen writes: “As Whitaker himself points out, there simply are not enough data from well-designed trustworthy studies” to support any conclusion that the drugs might be causing long-term harm. (At least that is what I think he means.)
Here’s the actual story. In this book, I flesh out the evidence base cited by mainstream psychiatry for its drugs. I present the evidence for their short-term efficacy, and the results from drug-withdrawal studies that are taken as evidence that the drugs “prevent relapse.” But then I note that psychiatric researchers, when they have tried to find proof that their medications are improving the long-term course of mental disorders, have regularly concluded that there is no good evidence that this is so. In other words, I am pointing out, in a review of the evidence for the drugs, that psychiatry itself admits that it doesn’t have data showing that psychiatric drugs improve long-term outcomes. That concession by mainstream psychiatry then sets the stage for my review of the outcomes literature from the past 50 years, and I believe that the evidence, time and again, collectively tells a consistent story of treatment that, quite tragically, alters the long-term course of mental disorders for the worse. Now, as I write in the solutions section, that doesn’t mean that psychiatric medications have no place in psychiatry’s toolbox. Clearly, they do. But it does mean that psychiatry might get better results if they used the drugs in a selective, cautious manner, and I then report on a program in Finland that has adopted this approach with its first-episode psychotic patients, and is now reporting much improved outcomes.
6. All reasonable people can agree that psychiatric medications are very helpful
After informing the readers that even I conceded that there is no good evidence for my theory, Dr. Rosen then asserts “there is no denying that (psychiatric drugs) have brought a huge improvement in quality of life for millions.” He has, at this point, successfully defended the common wisdom about psychiatric medications. He also has set me up for a final, very big fall in the readers’ eyes.
6. The author of this book can be likened to an AIDS denier
In the final part of the review, Dr. Rosen—who has not given any description of who I am—likens me to Thabo Mbeki, the former president of South Africa who, a decade ago, “refused to accept that AIDS was caused by the HIV virus.” This denial led to the “premature death of 365,000 South Africans,” Rosen writes, and he then warns that with my ill-informed book, I may be doing similar harm. “Those who would seize the opportunity to cast psychiatry as a discipline into the rubbish heap without consideration for the benefits it has brought to so many would do well to remember how Mbeki’s inability to distinguish between theory and fact exacted such an enormous toll in human life and suffering.”
So who am I? I have been writing about science and medicine in various forums for more than 20 years. In fact, I was director of publications at Harvard Medical School for a time in the 1990s, directing coverage of research by scientists at such institutions as Children’s Hospital in Boston, where Dr. Rosen now works. Anatomy of an Epidemic is my fourth book (and my second related to the history of psychiatry), and I could easily point to other credentials that Dr. Rosen might have mentioned. He could have summed it up this way: Robert Whitaker, a journalist who has written extensively about science and medicine, etc.
However, by omitting any such identifying information, Dr. Rosen is then able to make this astonishing leap in which he compares me to an AIDS denier. That tells readers that I must be—and there is no other way to put it—a nutcase. I would suggest that it also serves as a warning to other journalists: Take on the medical establishment in a profound way, and you are risking your career. The Boston Globe is an influential paper, and to be likened to an AIDS denier is not the sort of thing that enhances your reputation, or ability to continue writing in this field. When I finished Dr. Rosen’s review Wednesday morning, I nearly spit out my morning coffee.
7. The bottom line for readers
At the end of the review, readers of the Boston Globe—my hometown paper, by the way, and for whom I once co-wrote a series that was a finalist for the Pulitzer Prize in Public Service—can only conclude that it would be a monstrous waste of $25 to buy Anatomy of an Epidemic. The review’s tagline describes Dr. Rosen as a “pediatric lung and sleep specialist at Children’s Hospital in Boston and an instructor in pediatrics at Harvard Medical School,” and this respected “medical expert” has just reviewed a book by some unknown person with no societal credibility at all.
All in all, it’s a very effective defense of the “psychiatric drugs are good” story. It serves to keep hidden from the public the disability data that occasioned the book, and it also prompts the public to think that anyone who raises fundamental questions about whether psychiatric drugs are helpful over the long term deserves to be shunned.
As such, his review beautifully illustrates the “information control” process that I write about in the last third of Anatomy of an Epidemic. In that sense, it was very well done, and I don’t doubt that, in the weeks and months ahead, there may be other reviews of a similar sort.
First published on Mad in America Robert Whitaker’s website.