Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274)

by Frances, Allen

  Overdiagnosis is also easy. Everyone has some PTSD symptoms after going through something horrible, but these usually wear off without causing long-term or clinically significant hardship. Symptoms are more likely to persist and be interpreted in their worst light if significant financial gain is attached to having them. All other emotional problems, both preexisting and subsequent, may be incorporated into the PTSD experience. Patienthood can become a way of life and rationale for people who are struggling for other reasons. On the military side, PTSD is incentivized because the diagnosis qualifies someone for otherwise unavailable disability and health benefits. In civilian life, the most frequent context for overdiagnosis is the assignment of workmen’s compensation or of damage awards in legal suits. The overdiagnosis is not necessarily a question of conscious manipulation (although faking certainly does happen); symptoms just tend to take on more consequence when money is at stake.34

  PTSD is one fad that has not been much instigated by drug companies. They shy away from advertising for it because medicines are not very effective and they fear the risk of bad publicity when things don’t go well in patients with such high visibility.

  The Sexual Revolution

  Sex has always been sexy to the world at large but something of a bore to psychiatry. The field boasts only a small handful of experts, attracts almost no research funding, has a thin professional literature, and is a very small part of most clinical practice. I had more than the usual exposure as part of my job as head of the outpatient clinic at the Cornell University/New York Hospital during the 1980s and 1990s. One of the stars of our faculty was Helen Singer Kaplan, a glamorous pioneer in the field. Why pioneer? It was she who popularized the notion that the sexual disorders should reflect problems occurring in each of the stages of the sexual act: desire, arousal, and orgasm. Helen was the person most responsible for shaping the DSM-III sexual disorders, and her influence is enduring because this section has remained stable through subsequent DSMs.35

  Why glamorous? Helen had personal style, but beyond that she had a practical hands-on attitude to sex therapy that seemed shockingly direct but was probably very effective. In her private practice, she made use of a stable of “sexual surrogates”—breathtakingly beautiful, sexually wise assistant therapists who taught the ropes to Helen’s male patients and were perfectly capable of rekindling anyone’s flagging desire. Helen claimed her surrogates got incredible results—and I certainly believe they could work wonders. Another of Helen’s sidekicks—Dr. Ruth Westheimer—had a completely different claim to fame and an improbable TV and radio stardom. “Dr. Ruth” got great ratings by being the tiny old grandmother who could cheerfully rattle off the graphic details of the most intimate sexual acts, in a delightful Old World accent.

  For DSM-IV, the sexual disorders represented the stillest backwater of psychiatry, our least important task. We had a sexual disorders work group that sifted through the limited literature, offered very few suggestions, did no field trials. It was a relief to have at least one section of the manual that required so little work.

  This was the quiet before an unanticipated storm. Several years after DSM-IV was published, the sexual disorders exploded off its dull pages to become the marketing hit of a lifetime. Viagra changed the world, becoming one of the best-selling drugs in history and turning an obscure sexual disorder into a ubiquitous lifestyle issue. Viagra could not have risen to its heights of fame and fortune without first convincing the world that “erectile dysfunction” (affectionately nicknamed ED for the TV and print ads) was a ubiquitous problem that could occur even in the seemingly hardy.

  The first step was to persuade old folks to come out of the closet and own up to their ED. A brilliantly designed ad campaign managed to purchase the services of the world’s most perfect shill. Bob Dole, on the rebound from losing to the much younger (and obviously more virile) Bill Clinton in the 1996 presidential election, started a second and more lucrative career as the poster boy of Viagra and the champion of rejuvenated geriatric sex. The implication was that Viagra provided a fountain of youth that could expand virility and vitality even for guys too old to be president. And if someone as famous as good old Bob could man up on TV and admit to having ED, why not bring up your problem in the privacy of your doctor’s consulting room? The message—you owe it to yourself and to the little lady to be all you can possibly be. With Viagra on board, seventy was to become the new forty.

  But why stop with the geriatric set, and its necessarily narrow market, when there is so much product to sell, so little time. Soon no one of any age could possibly hide from the long reach of ED; no bedroom was safe from its chilling grip. ED was everywhere, featured on all media all the time.

  The marketing of ED required that its threshold be pushed ever lower. ED started as a medical condition applying only to a small population of sufferers with well-established flaccidity. Soon Viagra became a general potency tonic. If it could raise the dead, just imagine what a grand slam home run it could hit for the living. Sex pills went from being a medical treatment to a performance enhancer and an insurance policy protecting against that occasional off day. After all, a wise man is always armed and loaded to the hilt. ED had outgrown the narrow confines of psychiatry and medicine. It was more than just another “epidemic”; it was a lifestyle choice worthy of consideration by every couple. Viagra to the rescue to make the man of the house truly a man in full. The selling of ED was a total success.

  Well, almost total. So far the sexual dysfunction story had pretty much left out half the human race, not something that sits well with the drug company financial types or their marketing geniuses. Women had surely made their lovely appearance in some of the Viagra ads, exuding the unbelievable satisfaction that comes from consorting with a Viagra man. But she was decidedly the sidekick and trophy, not the primary target of the campaign. This was unacceptable to the dignity (and greed) of the Pharma machine. Certainly women have sexual dysfunctions too. They are described right there in black-and-white in DSM-IV. If they have the ill, let’s set about the job of selling them the pill.

  There was one small problem—no real evidence that Viagra works for women. The other products being hawked (e.g., testosterone patches) were also not all that effective and had problematic side effects. But no matter, let’s create the disorder and the customers will come. This marketing tale is well spelled out by Ray Moynihan in his well-researched book with the wonderful title Sex, Lies, and Pharmaceuticals. The ploy was to redefine expectable glitches in normal female sexuality into an almost ubiquitous “female sexual dysfunction” (FSD).36

  The best hook for selling FSD was the use (really, misuse) of surveys asking women about their sexual experience. It became widely reported, and accepted as established fact, that 43 percent of women had FSD. These results were remarkable—a marketing godsend and triumph. Previously obscure DSM sexual disorders were being inflated into something that actually transcended mere epidemic. The expectable sexual experience of almost one half of women had been repackaged as FSD.

  One symptom does not a diagnosis make. Asking a woman seven questions about her sex life and concluding she has an illness if she responds positively to any one of them is either naive or intellectually dishonest. It leaves out altogether the determination of whether there is a necessary cluster of symptoms and whether these cause enough distress to warrant clinical attention. Women who checked a box were often not troubled by having a less than completely perfect sex life; nor did they usually see themselves as having a medical problem. Not every woman wanted or expected to live a Sex and the City lifestyle.

  The sexual revolution in drug marketing is the most blatant widening of a narrow medical indication into a performance-enhancing, cosmetic, lifestyle “treatment.” It is also the most evident exhibition of the raw power and profitability of advertising to sell attitudes, illness, and product. DSM-IV was no match for all this muscle, easily misused or sidestepped. Also lost in the pill-pushing shuffle were sexual and re
lational psychotherapies that might bring lasting benefit, not just real or imagined symptomatic improvement.

  Rape Is a Crime, Not a Mental Disorder

  This a cautionary tale of legal loopholes, Supreme Court dithering, and DSM-IV foul-ups—all combining to create constitutional violations and a terrible misuse of psychiatry.

  The story begins with a laudable legal reform that had unanticipated dreadful consequences. Thirty years ago, the civil rights movement became rightly concerned that blacks were getting longer prison terms than whites for committing equivalent crimes. The answer was to substitute fixed sentencing for each type of crime instead of allowing the previously indeterminate (and possibly biased) judicial discretion. This was meant to guarantee uniformity, predictability, and fairness. To keep the total number of prison beds constant (and thus not raise costs), the fixed sentence for each crime was set at the average of what had before been a wide range. For rape, this was seven years. A brutal serial rapist (who previously might have pulled twenty-five years from a disapproving judge) now was limited to a term of only seven. The result was predictable, but not predicted. Brutal recidivists used their premature freedom to rape again, often soon after release from prison and in the most despicable ways possible.

  The ensuing public outrage inspired a legal loophole to keep rapists locked up. Twenty states and the federal government passed “sexually violent predator” (SVP) laws that allowed the continued psychiatric incarceration of offenders if it could be shown that they had a mental disorder. At the end of their prison terms, the prisoner would become a mental patient, transferred involuntarily to a psychiatric “hospital” that actually quite closely resembled a prison. Few of the railroaded SVPs ever accepted a “treatment” format that allowed whatever they said to be used against them in later hearings. Even among those who complete the “treatment,” few ever achieve release.

  From the public safety standpoint, this lifetime-within-walls approach was a brilliant solution, a convenient way to keep possibly dangerous rapists from prowling the streets. But there is a downside that presents a different set of dangers—the statutes strike straight to the heart of hard-won constitutional protections against preventive detention and double jeopardy. The wise legal saying is that “bad cases make for bad law.” Thousands of undesirable rapists have been confined for the best of motives, but using the worst of methods and creating a slippery slope erosion of precious constitutional protections.

  Which brings us to Supreme Court dithering. In three close and remarkably ambiguous rulings, the Court supported the constitutionality of this convenient parking of SVPs—but emphasized that it is legal only when the rapist has a mental disorder that made him do it. The U.S. Constitution doesn’t allow preventive detention for criminals no matter how dangerous they are feared to be, but it does allow long-term involuntary treatment for mental patients. The Supreme Court approval of SVP commitment depends completely on the presumed ability to distinguish individuals whose sexual dangerousness arises from sickness rather than common criminality. Lacking the presence of mental disorder, enforced incarceration in a psychiatric hospital-cum-prison would clearly represent a deprivation of due process and a violation of civil rights. Our Constitution does not allow us to turn all about-to-be-released prisoners into unwilling patients, just because we fear they may possibly still be dangerous.

  The constitutionality of the SVP statutes rests on having a meaningful way of distinguishing the mentally ill sex offender from the simple criminal. Given three chances, the Supreme Court refused to provide guidelines on the critical question of what constitutes a qualifying diagnosis. Unfortunately, the state statutes are also far too vague to be of any help. The American Psychiatric Association does have an unequivocal position. Rape as a mental disorder was considered in the last four DSM revisions (DSM-III, DSM-IIIR, DSM-IV, and DSM-5) and definitively rejected by all of them and also by a special task force report. Rape is a crime, not a mental disorder.37

  But what was the legal system to do with potentially dangerous rapists awaiting their release dates? This is where a DSM-IV foul-up played its part. The very worst writing in all of DSM-IV is concentrated in the sexual disorders section. Not anticipating the later misuse of DSM-IV in SVP hearings, our wording was imprecise and did not provide adequate protection against the stretching of the definition of mental disorder to include rape. Zealous, misinformed, and highly paid evaluators, employed by the government, badly misinterpreted the intent of DSM-IV and began the strange practice of diagnosing the act of rape as itself an indication of the presence of a qualifying mental disorder that would justify psychiatric incarceration. The evaluators ignored the many forms of criminal intent that motivate rape—callously grabbing opportunity, drug disinhibition, poor impulse control, exerting power, revenge, profiting from the sex trade, gangbanger peer pressure, wartime mayhem, and so on. Instead, rape was magically medicalized, in the service of legal and public safety expediency, to allow preventive detention and deprive rapists of their civil rights.

  Regarding rape as a mental disorder violates common sense and time-honored legal precedent. Rape has always been treated as a crime, never as a sickness. The Bible says so; the much older Code of Hammurabi says so, and, in fact, so does every legal code ever written. Punishments have varied. In tribal law, the female victim is treated as private property that has lost some of its value after the rape. The rapist therefore has to pay off her father, husband, or other owner. Later systems, with more respect for women, treat rape not just as a matter of lost financial value, but rather as a crime against the women and the state. Never before has rape ever received legal recognition as a sickness and never before has the incarceration of rapists been psychiatric, rather than penal.

  Rapists are always bad people, very rarely mad people. They should not be able to use mental disorder as a legal excuse, but neither should rape be a legal excuse for mental hospitalization. Rapists should be kept off the streets with very long prison sentences, not loopholed into involuntary psychiatric commitment. Once they have served their time, they should be released, as would any other common criminal.

  My concern does not arise from any sympathy for rapists. Instead my fear is that treating them unfairly greases that slippery slope to a more general degradation of the Constitution, lessening respect for the sacred values of due process and the protection of civil liberties. The frightening experience of other countries should counsel caution in ours. Psychiatry has elsewhere been dangerously abused by the penal system to stifle political dissent, economic complaints, or individual difference. A legal system willing to compromise its constitutional principles to deal with inconvenient rapists may in the future stretch further to use psychiatry against those with inconvenient political goals, religious beliefs, or sexual preferences.38

  As Robert Musil pointed out seventy years ago, “The angel of medicine, if he has listened too long to lawyer’s arguments, too often forgets his own mission. He then folds his wings with a clatter and conducts himself in court like a reserve angel of the court.”39

  The Lesson

  Even if you do most things pretty much right in preparing a diagnostic manual (and we didn’t do a bad job with DSM-IV), you don’t get to control how it will be used and misused once it is published and the genie is out of the bottle. We must take partial responsibility for the epidemics of autism, attention deficit, and adult bipolar disorder. But epidemics are driven by many other powerful and converging forces: the drug company’s aggressive selling of diagnoses; reckless thought leaders; gullible patients and doctors; advocacy groups; the media; the Internet; and social networking. Some inflating influences are diagnosis specific: school systems encouraging the diagnosis of autism or ADD as a qualification for extra services or the VA requiring a PTSD diagnosis for health and disability benefits. Others are general trends—the unrealistic expectation of so many people in our society that they, and their children, not only be perfect but also feel perfect.

  DSM
-IV was a bit player in the continuing march of diagnostic inflation. The major engine was drug company marketing. Three years after DSM-IV was published, Pharma lobbyists finagled an unprecedented reversal in federal regulations to allow advertising directly to consumers. This was the key to the kingdom. In the next decade, the companies tripled spending on marketing—selling depression, ADHD, bipolar, social phobia, and sexual disorders with the same enthusiasm that Coca-Cola sells pop. The ads were usually misleading but devastatingly effective. Patients self-misdiagnosed and asked their doctor for the magic pill that would correct their chemical imbalance. The doctors listened. Patients who requested a drug they had seen advertised were seventeen times more likely to walk out of the office with a prescription. The massive advertising had put the companies in charge of diagnosis. In the excitement, I doubt that many people were checking the fine print of DSM-IV criteria sets to ensure that there was a good fit. DSM-IV had lost control of the system—assuming we ever had it. There are no defenders of normality, nothing to prevent the constant creep of diagnosis. It is an unfair fight. Humpty Dumpty was certainly not calling the shots.

  DSM-IV didn’t by itself do much harm, but we certainly didn’t do much good (unless you give us dubious credit for not making a bad situation worse). On paper, we won most of the battles to contain diagnostic spread—but we badly lost the war to the outside forces that determined how DSM-IV would be used. I really don’t know whether a more aggressively revised and deflating DSM-IV, with markedly raised thresholds, would have been feasible or effective. However, in retrospect, knowing what I know now, I regret that we didn’t do the experiment. We probably could not have stopped diagnostic inflation, but I would feel better if we had gone down fighting, rather than just standing pat with what turned out to be a losing hand.