Anatomy of an Epidemic Read online

  Also by Robert Whitaker

  Mad in America

  The Mapmaker’s Wife

  On the Laps of Gods

  To Lindsay

  May you sing “Seasons of Love” again

  and be filled with joy

  CONTENTS

  Foreword

  Part One: The Epidemic

  1. A Modern Plague

  2. Anecdotal Thoughts

  Part Two: The Science of Psychiatric Drugs

  3. The Roots of an Epidemic

  4. Psychiatry’s Magic Bullets

  5. The Hunt for Chemical Imbalances

  Part Three: Outcomes

  6. A Paradox Revealed

  7. The Benzo Trap

  8. An Episodic Illness Turns Chronic

  9. The Bipolar Boom

  10. An Epidemic Explained

  11. The Epidemic Spreads to Children

  12. Suffer the Children

  Part Four: Explication of a Delusion

  13. The Rise of an Ideology

  14. The Story That Was … and Wasn’t Told

  15. Tallying Up the Profits

  Part Five: Solutions

  16. Blueprints for Reform

  Epilogue

  Notes

  Acknowledgments

  FOREWORD

  The history of psychiatry and its treatments can be a contentious issue in our society, so much so that when you write about it, as I did in an earlier book, Mad in America, people regularly ask about how you became interested in the subject. The assumption is that you must have a personal reason for being curious about this topic, as otherwise you would want to stay away from what can be such a political minefield. In addition, the person asking the question is often trying to determine if you have any personal bias that colors your writing.

  In my case, I had no personal attachment to the subject at all. I came to it in a very back-door manner.

  In 1994, after having worked a number of years as a newspaper reporter, I left daily journalism to cofound a publishing company, CenterWatch, that reported on the business aspects of the clinical testing of new drugs. Our readers came from pharmaceutical companies, medical schools, private medical practices, and Wall Street, and for the most part, we wrote about this enterprise in an industry-friendly way. We viewed clinical trials as part of a process that brought improved medical treatments to market, and we reported on the financial aspects of that growing industry. Then, in early 1998, I stumbled upon a story that told of the abuse of psychiatric patients in research settings. Even while I co-owned CenterWatch, I occasionally wrote freelance articles for magazines and newspapers, and that fall I cowrote a series on this problem for the Boston Globe.

  There were several types of “abuses” that Dolores Kong and I focused on. We looked at studies funded by the National Institute of Mental Health (NIMH) that involved giving schizophrenia patients a drug designed to exacerbate their symptoms (the studies were probing the biology of psychosis). We investigated the deaths that had occurred during the testing of the new atypical antipsychotics. Finally, we reported on studies that involved withdrawing schizophrenia patients from their antipsychotic medications, which we figured was an unethical thing to do. In fact, we thought it was outrageous.

  Our reasoning was easy to understand. These drugs were said to be like “insulin for diabetes.” I had known that to be “true” for some time, ever since I had covered the medical beat at the Albany Times Union. Clearly, then, it was abusive for psychiatric researchers to have run dozens of withdrawal studies in which they carefully tallied up the percentage of schizophrenia patients who became sick again and had to be rehospitalized. Would anyone ever conduct a study that involved withdrawing insulin from diabetics to see how fast they became sick again?

  That’s how we framed the withdrawal studies in our series, and that would have been the end of my writing on psychiatry except for the fact that I was left with an unresolved question, one that nagged at me. While reporting that series, I had come upon two research findings that just didn’t make sense. The first was by Harvard Medical School investigators, who in 1994 announced that outcomes for schizophrenia patients in the United States had worsened during the past two decades and were now no better than they had been a century earlier. The second was by the World Health Organization, which had twice found that schizophrenia outcomes were much better in poor countries, like India and Nigeria, than in the United States and other rich countries. I interviewed various experts about the WHO findings, and they suggested that the poor outcomes in the United States were due to social policies and cultural values. In the poor countries, families were more supportive of those with schizophrenia, they said. Although this seemed plausible, it wasn’t an altogether satisfactory explanation, and after the series ran in the Boston Globe, I went back and read all of the scientific articles related to the WHO study on schizophrenia outcomes. It was then that I learned of this startling fact: In the poor countries, only 16 percent of patients were regularly maintained on antipsychotic medications.

  That is the story of my entry into the psychiatry “minefield.” I had just cowritten a series that had focused, in one of its parts, on how unethical it was to withdraw schizophrenia patients from their medications, and yet here was a study by the World Health Organization that seemingly had found an association between good outcomes and not staying continuously on the drugs. I wrote Mad in America, which turned into a history of our country’s treatment of the severely mentally ill, to try to understand how that could be.

  I confess all this for a simple reason. Since psychiatry is such a controversial topic, I think it is important that readers understand that I began this long intellectual journey as a believer in the conventional wisdom. I believed that psychiatric researchers were discovering the biological causes of mental illnesses and that this knowledge had led to the development of a new generation of psychiatric drugs that helped “balance” brain chemistry. These medications were like “insulin for diabetes.” I believed that to be true because that is what I had been told by psychiatrists while writing for newspapers. But then I stumbled upon the Harvard study and the WHO findings, and that set me off on an intellectual quest that ultimately grew into this book, Anatomy of an Epidemic.

  part one

  The Epidemic

  1

  A Modern Plague

  “That is the essence of science: ask an impertinent

  question, and you are on the way to

  a pertinent answer.”

  —JACOB BRONOWSKI (1973)1

  This is the story of a medical puzzle. The puzzle is of a most curious sort, and yet one that we as a society desperately need to solve, for it tells of a hidden epidemic that is diminishing the lives of millions of Americans, including a rapidly increasing number of children. The epidemic has grown in size and scope over the past five decades, and now disables 850 adults and 250 children every day. And those startling numbers only hint at the true scope of this modern plague, for they are only a count of those who have become so ill that their families or caregivers are newly eligible to receive a disability check from the federal government.

  Now, here is the puzzle.

  As a society, we have come to understand that psychiatry has made great progress in treating mental illness over the past fifty years. Scientists are uncovering the biological causes of mental disorders, and pharmaceutical companies have developed a number of effective medications for these conditions. This story has been told in newspapers, magazines, and books, and evidence of our societal belief in it can be found in our spending habits. In 2007, we spent $25 billion on antidepressants and antipsychotics, and to put that figure in perspective, that was more than the gross domestic product of Cam
eroon, a nation of 18 million people.2

  In 1999, U.S. surgeon general David Satcher neatly summed up this story of scientific progress in a 458-page report titled Mental Health. The modern era of psychiatry, he explained, could be said to have begun in 1954. Prior to that time, psychiatry lacked treatments that could “prevent patients from becoming chronically ill.” But then Thorazine was introduced. This was the first drug that was a specific antidote to a mental disorder—it was an antipsychotic medication—and it kicked off a psychopharmacological revolution. Soon antidepressants and antianxiety agents were discovered, and as a result, today we enjoy “a variety of treatments of well-documented efficacy for the array of clearly defined mental and behavioral disorders that occur across the life span,” Satcher wrote. The introduction of Prozac and other “second-generation” psychiatric drugs, the surgeon general added, was “stoked by advances in both neurosciences and molecular biology” and represented yet another leap forward in the treatment of mental disorders.3

  Medical students training to be psychiatrists read about this history in their textbooks, and the public reads about it in popular accounts of the field. Thorazine, wrote University of Toronto professor Edward Shorter, in his 1997 book, A History of Psychiatry, “initiated a revolution in psychiatry, comparable to the introduction of penicillin in general medicine.”4 That was the start of the “psychopharmacology era,” and today we can rest assured that science has proved that the drugs in psychiatry’s medicine cabinet are beneficial. “We have very effective and safe treatments for a broad array of psychiatric disorders,” Richard Friedman, director of the psychopharmacology clinic at Weill Cornell Medical College, informed readers of the New York Times on June 19, 2007.5 Three days later, the Boston Globe, in an editorial titled “When Kids Need Meds,” echoed this sentiment: “The development of powerful drugs has revolutionized the treatment of mental illness.”6

  Psychiatrists working in countries around the world also understand this to be true. At the 161st annual meeting of the American Psychiatric Association, which was held in May 2008 in Washington, D.C., nearly half of the twenty thousand psychiatrists who attended were foreigners. The hallways were filled with chatter about schizophrenia, bipolar illness, depression, panic disorder, attention deficit/hyperactivity disorder, and a host of other conditions described in the APA’s Diagnostic and Statistical Manual of Mental Disorders, and over the course of five days, most of the lectures, workshops, and symposiums told of advances in the field. “We have come a long way in understanding psychiatric disorders, and our knowledge continues to expand,” APA president Carolyn Robinowitz told the audience in her opening-day address. “Our work saves and improves so many lives.”7

  But here is the conundrum. Given this great advance in care, we should expect that the number of disabled mentally ill in the United States, on a per-capita basis, would have declined over the past fifty years. We should also expect that the number of disabled mentally ill, on a per-capita basis, would have declined since the arrival in 1988 of Prozac and the other second-generation psychiatric drugs. We should see a two-step drop in disability rates. Instead, as the psychopharmacology revolution has unfolded, the number of disabled mentally ill in the United States has skyrocketed. Moreover, this increase in the number of disabled mentally ill has accelerated further since the introduction of Prozac and the other second-generation psychiatric drugs. Most disturbing of all, this modern-day plague has now spread to the nation’s children.

  The disability numbers, in turn, lead to a much larger question. Why are so many Americans today, while they may not be disabled by mental illness, nevertheless plagued by chronic mental problems—by recurrent depression, by bipolar symptoms, and by crippling anxiety? If we have treatments that effectively address these disorders, why has mental illness become an ever-greater health problem in the United States?

  The Epidemic

  Now, I promise that this will not just be a book of statistics. We are trying to solve a mystery in this book, and this will lead to an exploration of science and history, and ultimately to a story with many surprising twists. But this mystery arises from an in-depth analysis of government statistics, and so, as a first step, we need to track the disability numbers over the past fifty years to make certain that the epidemic is real.

  In 1955, the disabled mentally ill were primarily cared for in state and county mental hospitals. Today, they typically receive either a monthly Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) payment, and many live in residential shelters or other subsidized living arrangements. Both statistics provide a rough count of the number of people under governmental care because they have been disabled by mental illness.

  In 1955, there were 566,000 people in state and county mental hospitals. However, only 355,000 had a psychiatric diagnosis, as the rest suffered from alcoholism, syphilis-related dementia, Alzheimer’s, The Hospitalized Mentally Ill in 1955 and mental retardation, a population that would not show up in a count of the disabled mentally ill today.8 Thus, in 1955, 1 in every 468 Americans was hospitalized due to a mental illness. In 1987, there were 1.25 million people receiving an SSI or SSDI payment because they were disabled by mental illness, or 1 in every 184 Americans.

  The Hospitalized Mentally Ill in 1955

  First Admissions Resident Patients

  Psychotic Disorders

  Schizophrenia 28,482 267,603

  Manic-depressive 9,679 50,937

  Other 1,387 14,734

  Psychoneurosis (Anxiety) 6,549 5,415

  Personality Disorders 8,730 9,739

  All Others 6,497 6,966

  Although there were 558,922 resident patients in state and county mental hospitals in 1955, only 355,000 suffered from mental illness. The other 200,000 were elderly patients suffering from dementia, end-stage syphilis, alcoholism, mental retardation, and various neurological syndromes. Source: Silverman, C. The Epidemiology of Depression (1968): 139.

  Now it may be argued that this is an apples-to-oranges comparison. In 1955, societal taboos about mental illness may have led to a reluctance to seek treatment, and thus to low hospitalization rates. It’s also possible that a person had to be sicker to get hospitalized in 1955 than to receive SSI or SSDI in 1987, and that’s why the 1987 disability rate is so much higher. However, arguments can be made in the other direction, too. The SSI and SSDI numbers only provide a count of the disabled mentally ill less than sixty-five years old, whereas the mental hospitals in 1955 were home to many elderly schizophrenics. There were also many more mentally ill people who were homeless and in jail in 1987 than in 1955, and that population doesn’t show up in the disability numbers. The comparison is an imperfect one, but it’s the best one we can make to track disability rates between 1955 and 1987.

  Fortunately, from 1987 forward it’s an apples-to-apples comparison, involving only the SSI and SSDI numbers. The Food and Drug Administration approved Prozac in 1987, and over the next two decades the number of disabled mentally ill on the SSI and SSDI rolls soared to 3.97 million.9 In 2007, the disability rate was 1 in every 76 Americans. That’s more than double the rate in 1987, and six times the rate in 1955. The apples-to-apples comparison proves that something is amiss.

  If we drill down into the disability data a bit more, we find a second puzzle. In 1955, major depression and bipolar illness didn’t disable many people. There were only 50,937 people in state and county mental hospitals with a diagnosis for one of those affective disorders.10 But during the 1990s, people struggling with depression and bipolar illness began showing up on the SSI and SSDI rolls in ever-increasing numbers, and today there are an estimated 1.4 million people eighteen to sixty-four years old receiving a federal payment because they are disabled by an affective disorder.11 Moreover, this trend is accelerating: According to a 2008 report by the U.S. General Accountability Office, 46 percent of the young adults (ages eighteen to twenty-six) who received an SSI or SSDI payment because of a psychiatric disability in 2
006 were diagnosed with an affective illness (and another 8 percent were disabled by “anxiety disorder”).12

  The Disabled Mentally Ill in the Prozac Era

  SSI and SSDI Recipients Under Age 65 Disabled by Mental Illness, 1987–2007

  One in every six SSDI recipients also receives an SSI payment; thus the total number of recipients is less than the sum of the SSI and SSDI numbers. Source: Social Security Administration reports, 1987–2007.

  This plague of disabling mental illness has now spread to our children, too. In 1987, there were 16,200 children under eighteen years of age who received an SSI payment because they were disabled by a serious mental illness. Such children comprised only 5.5 percent of the 293,000 children on the disability rolls—mental illness was not, at that time, a leading cause of disability among the country’s children. But starting in 1990, the number of mentally ill children began to rise dramatically, and by the end of 2007, there were 561,569 such children on the SSI disability rolls. In the short span of twenty years, the number of disabled mentally ill children rose thirty-five fold. Mental illness is now the leading cause of disability in children, with the mentally ill group comprising 50 percent of the total number of children on the SSI rolls in 2007.13

  The baffling nature of this childhood epidemic shows up with particular clarity in the SSI data from 1996 to 2007. Whereas the number of children disabled by mental illness more than doubled during this period, the number of children on the SSI rolls for all other reasons—cancers, retardation, etc.—declined, from 728,110 to 559,448. The nation’s doctors were apparently making progress in treating all of those other conditions, but when it came to mental disorders, just the opposite was true.