The Book of Woe: The DSM and the Unmaking of Psychiatry (12 page)

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“
With every new revelation
⁴⁶
, our credibility with patients has been damaged, and we have to protect that first and foremost,” former APA president Steven Sharfstein told
The New York Times
in the aftermath of the Grassley investigation. “The price we pay for these kinds of revelations is credibility,” E. Fuller Torrey, one of the country’s most influential psychiatrists, chimed in, “and we just can’t afford to lose any more of that in this field.” These doctors probably didn’t know just how closely they were echoing the lament of Thomas Salmon. It was as if nothing had changed in a century. And, indeed, in a crucial way nothing had.

That may be part of the reason that the APA decided that it was time for a radical DSM revision, that even if the paradigm had not really shifted, they couldn’t afford to stick with the tried and untrue. Michael First attempted to stop them. He figured he had the juice to criticize the APA’s reformist ambitions and still be tapped to head up the new effort. “I thought they would need my skills, so I pushed,” he told me.

But he soon realized he had miscalculated. “I stood my ground, but it was becoming more and more clear that I was getting iced out.” And in April 2006, when he heard that the APA had appointed University of Pittsburgh psychiatry professor David Kupfer as chair of the task force and Darrel Regier as the vice chair, he was not surprised.

Even five years later I could still hear disappointment in his voice when he told me, after a long pause, about hearing the bad news. He sounded a little bitter as he recounted the DSM-5 leadership’s failure to respond to his offer to repeat his stint as text editor, and its refusal to take his ideas seriously, but no more than you might expect from a guy who has seen the opportunity to do what he was born to do snatched away by people who he thought had the wrong idea of how to go about it.

In the meantime, the task force’s attempts to get the revision under way were hampered by the shadow of corruption that was passing over the profession. In
The Truth About the Drug Companies
, author and former editor of
The New England Journal of Medicine
Marcia Angell had drawn attention to the unsavory relationship between the industry and the profession. And with a series of articles in prominent journals, she made it clear that the problem was not a figment of sensationalist journalists’ imaginations.

Many psychiatrists thought the case against them was overblown. They insisted that drug company money did not influence their prescribing habits or, when it came to the DSM, their deliberations about what would get into the book. They also pointed out that
the $4 million or so the industry kicked down every year
⁴⁷
for the APA’s “educational programs” amounted to free money for the organization and its members, providing training that ultimately benefited their patients. But, said Scully, “
my board thought that through
⁴⁸
and instructed me to phase out those programs,” deciding, he told me, that “public trust was more important than money.”

The board of trustees also decided to purge the DSM-5 of drug money. Task force and work group members would be able to hold no more than $50,000 in drug company stock and had to limit their earnings from the industry to $10,000 annually as long as they served. The trustees didn’t say how they had established those criteria for diagnosing corruption. Nor did they seem to have wondered whether this move was really the best solution to the Pharma infestation. After all, the corruption wasn’t so much financial as intellectual, the whole psychiatric-industrial consort dancing together to mutual satisfaction. The drug companies didn’t have to pay off psychiatrists to create particular diseases, not when whatever disorder found its way into the DSM could be exploited as an indication for a drug; who needs conspiracies when you have capitalism?

For their part, psychiatrists didn’t have to be on the take to be eager to turn all the troubles their patients faced into nails for their chemical sledgehammers; they only had to want to give patients relief. And they surely didn’t have to be seduced into the medical model at lavish lunches, not when from their first days in medical school they had been, as Freud put it, “flirting with endocrinology and the autonomous nervous system.” But then again, while the trustees may have been more worried about public trust than money, they surely were still worried about money, which would continue to flow only so long as the public was convinced that psychiatrists were practicing real medicine.

The trustees also underestimated the difficulty they would have in rounding up psychiatrists willing to take vows of relative poverty in order to spend years arguing over diagnostic criteria. Between those requirements and some others—that no university have more than two members on the same committee, for instance, and that efforts be made to recruit members from professions other than psychiatry and from outside the U.S.—
it took nearly two years
⁴⁹
from the time Kupfer and Regier were named to the time the eighteen-member task force was assembled and appointed the 140 or so experts to the work group. So even as they announced their roster in May 2008, they had to know that their deadline—May 2012, which meant that they’d have to have a draft ready by the end of 2011—already loomed impossibly near.

Michael First was not appointed to the task force. He was not placed on any of the work groups. He was not assigned to consult with the two work groups that requested him as an expert adviser. In 2007, the APA terminated the contract under which he had been the in-house DSM expert, representing the organization around the world. He was not alone in being left out in the cold. “
All the people at the top
⁵⁰
of the previous DSMs were completely excluded,” he said. “There was some idea that the old forces would impede the paradigm shift, stand in the way of a new vision.”

But the new forces were already losing confidence in that vision, or at least hedging their bets. Setting out the guidelines for making changes, the task force still asserted that “
a new diagnostic paradigm must be developed
⁵¹
,” but it also cautioned that the DSM-5 would “not in itself represent a ‘paradigm shift.’” It vowed to maintain continuity with past editions, but it also promised that “unlike in DSM-IV, there will be no a priori constraints on the degree of change between DSM-IV and DSM-V.”

The new book, it seemed, would be a departure, but then again, maybe it wouldn’t. The APA wasn’t going to constrain itself, nor would it commit itself to change. Instead, it would try to have it both ways.

O
ne of Allen Frances’s heroes is Cincinnatus, the Roman dictator who, drafted out of retirement to lead the army, slaughtered the enemy and promptly abdicated to return to his beloved farm. In Frances’s version of the story, by the time the DSM-5 effort got under way, he had lost interest in nosology.

“
I was bored stiff
¹
with the subject,” he told me. “I was pursuing another of my life’s goals—being a beach bum.”

That was not the immediate purpose of his retirement from Duke in 1997, ten years earlier than he had planned. And it wasn’t boredom that drove him out. “
Psychiatric classification
²
may be the only boring topic in psychiatry,” he said. “Seeing patients and teaching never got boring,” and Duke offered plenty of opportunities to do that, as well as to travel the world giving talks, to conduct research, to add to his seventy-plus-page CV, to collect awards and fellowships, and, if he’d been so inclined, to burnish his reputation as the most powerful psychiatrist in America. Rather, it was a personal matter: his wife Vera’s Parkinson’s disease was getting so bad that she needed his full-time care.

According to the doctors, Vera wasn’t even supposed to be alive by then. She had been diagnosed in 1988 with brain cancer and given a year to live. “
Perhaps not surprisingly, the diagnosis
³
was unreliable and imprecise,” Frances said. “And the prognosis was simply wrong.”

In the end it wasn’t the cancer that took her life. It was the treatment, which had caused her Parkinson’s. After it worsened in 1997, they moved, first back to New York, where he had spent the first twenty-five years of his career at Cornell and Columbia (where he worked with Bob Spitzer), and then to San Diego. When planning for the DSM-5 started in 1998, he was nursing Vera, sitting on the beach, reading history, and spending time with his grandchildren, who lived nearby. After Vera died in 2007, he remained uninvolved. But then in 2009 a colleague told him about a proposal for what Frances thought was an unreliable and imprecise diagnosis with a questionable prognosis and a dangerous treatment—so dangerous, in fact, that it got Allen Frances off the beach and into the fight of his professional life.

Frances had already passed up one opportunity to weigh in on DSM-5. In 2008, Bob Spitzer had called with some disturbing news. The previous year, Spitzer, who by then was almost eighty years old, semiretired, and hobbled by Parkinson’s, had asked the leaders of the DSM-5 to forward him the minutes of the task force meetings. (Spitzer says he was just curious.) Initially, the APA agreed to provide them. But then, after a long silence, the organization informed him that because of the need for “
confidentiality in the development
⁴
process,” his request had been nixed. Only APA trustees and members of the DSM-5 task force and work groups would be privy to the proceedings. In fact,
the APA had insisted
⁵
that no one could participate in the revision without promising in writing never to reveal what had gone on in their meetings.

Spitzer kept his counsel for a couple of months. But then in early June 2008, the
Psychiatric News
ran a story about the DSM-5. “
We are rethinking
⁶
the fundamental structure of DSM,” Regier told the reporter, “which would be a first since 1980, when DSM-III was produced.” Not only that, but according to APA president Carolyn Robinowitz, the revision process itself would be different. The APA was committed to an effort that was “open, transparent, and free of bias”—an indirect but unmistakable dig at Spitzer, who was known for his autocratic management style.

“
I was dumbfounded
⁷
,” Spitzer told me, “and then appalled.” It was bad enough that he’d been put out to pasture and that the APA seemed almost paranoid in its attempt to “not let anyone know what the hell was going on.” But the article’s disingenuousness in light of his exclusion was intolerable. “
I found out how transparent
⁸
and open the DSM-V process was,” he wrote to the
Psychiatric News
. Spitzer recounted his reaction upon discovering that participants had been forbidden to “divulge, furnish, or make accessible to anyone” any “pre-publication materials, group discussions, internal correspondence, information about the development process, or any other written or unwritten information in any form.”

I didn’t know whether to laugh or to cry. Laugh—because there is no way task force and work group members can be made to refrain from discussing the developing DSM-V with their colleagues. Cry—because this unprecedented attempt to revise DSM in secrecy indicates a failure to understand that revising a diagnostic manual—as a scientific process—benefits from the very exchange of information that is prohibited by the confidentiality agreement.

Spitzer’s complaints, previously published in the
Psychiatric Times
, an independent paper, had already stirred up psychiatrists across the country, and this latest salvo made the national news.

Spitzer tried to recruit Frances’s support for his opposition to the gag order. “
I told him I completely agreed
⁹
that this was a disastrous way for DSM-5 to start,” Frances said. “But I didn’t want to get involved at all. I wished him luck and went back to the beach.”

But Frances left San Diego long enough to attend a party for Columbia-affiliated psychiatrists held at San Francisco’s Asian Art Museum during the APA’s 2009 annual meeting. Among the attendees was Will Carpenter, the University of Maryland psychiatrist who headed the work group for psychotic disorders. Carpenter’s committee was considering a proposal for a
new diagnosis to be called Psychosis Risk Syndrome
¹⁰
. The disorder would address what some psychiatrists who treated schizophrenia thought was a critical gap in the DSM-IV. Schizophrenia generally comes on in late adolescence or early adulthood, but doctors had noticed that many patients’ troubles started long before, with symptoms that looked like signs of the disease only in retrospect, after their first psychotic break. Some of these patients had gone to psychiatrists, often taken as children or adolescents by worried parents. But even if the kids were behaving bizarrely or harboring strange beliefs or having hallucinations, their symptoms did not rise to the level of the DSM’s criteria for schizophrenia. This in turn limited the benefits for which they were eligible and the treatments that doctors might consider.

To psychiatrists like Carpenter, who spend their days with patients ravaged by schizophrenia and who could only offer them sedatives of limited efficacy that made them obese and shortened their life spans, the idea of catching schizophrenia early and possibly preventing it was irresistible. If doctors could determine just what those early signals were, then perhaps they could test for them as they already did for high cholesterol or blood glucose, identify those who were at risk, and head off the real trouble before it arrived. In addition, an official diagnosis could attract research dollars from industry and government, even as it helped psychiatry keep up with the rest of medicine, which was increasingly interested in early intervention.

But although researchers thought they had identified the early warning signs—delusions, hallucinations, or disorganized speech that didn’t rise to the level of full-fledged psychosis but occurred more or less weekly for a month and led them or their parents to seek treatment—and had followed patients who met those criteria for months or years, they found
a
conversion rate
of 25 to 30 percent
¹¹
, meaning that only something like one-quarter of the patients went on to develop a psychotic illness. That’s more than in the general population, of course, but still pretty low for a disorder that purports to predict psychosis.

“
I had not been closely following
¹²
the psychosis risk,” Frances said. “But I knew enough about it to know that it was an absolute disaster.” Among the things he knew was that to create a DSM disorder, which is to say a disease that can be diagnosed by a checklist of symptoms, is to create a huge opportunity for drug companies to market their products to doctors and patients—especially when the new diagnosis lowers the threshold for being declared ill. It was too easy, Frances thought, to confuse normal adolescent bizarreness—strange haircuts and odd beliefs, high drama, and the occasional emotional crisis—with the new criteria, especially for harried doctors trying to help worried parents. And, most dismaying of all, the drugs most likely to be prescribed for a diagnosis with
psychosis
in its name were heavily sedating, obesity-inducing antipsychotic drugs, such as the ones Biederman had used to treat his bipolar patients.

Frances sought out Carpenter at the party. “Have you thought through these things?” he asked.

The discussion was brief. Frances saw someone else he wanted to talk to. “I had a choice of being with my wife and a friend I don’t get to see,” he told me, “or arguing diagnosis with Will Carpenter. It was a no-brainer. Basically at that point I just didn’t care that much.”

But before Frances abandoned the conversation, he spotted another old hand from Columbia, Harold Pincus. He called Pincus over, explained the situation, and asked him to pick up the argument where he was leaving off. “Harold is smarter than me and more articulate and more precise. So I figured it was no great loss.”

Carpenter explained to Pincus
¹³
what he says he would have told Frances if he had stuck around: that there were other ways in which these patients were set off from the rest of the world—“alterations in cognition,” Carpenter told me, “and changes in gray matter.” He explained to Pincus that the studies followed kids who were in treatment, which might have accounted for the low conversion rates, and might, in fact, indicate that the diagnosis was a good idea. He told Pincus he didn’t think drugs were necessarily indicated for these patients, that they could be provided with
psychosocial treatments
—which is what psychiatrists call therapy these days—and
watchful waiting.

While Carpenter argued his case—unsuccessfully, according to Pincus, who told me, “
I still think it’s a crazy idea
¹⁴
”—Frances set off on a tour of the museum. But the conversation stayed on his mind. It reminded him of other times that he had remained silent while his profession launched diagnostic epidemics on an unsuspecting public. Some, like the childhood bipolar debacle, had had nothing to do with him; the DSM-IV committees had not even taken up the question of childhood mania. But others were the direct result of DSM-IV, and Frances regretted them.

One of the worst of these, in his view, was called Bipolar II Disorder. It was among the few new disorders introduced in DSM-IV. The doctors who had proposed it were trying to fix a problem that had arisen in the few years since Prozac had been introduced: the new generation of antidepressants had a tendency to cause depressed patients to become manic—what psychiatrists call
switching
. Although these patients had never been manic before, closer examination showed that they had had episodes of
hypomania
—times when they had a mood “clearly different from the usual nondepressed mood,” but not fully manic, and not lasting as long as a full-blown manic episode. Four days of “elevated, expansive, or irritable mood,” a decreased need for sleep, and increases in “distractibility” and “goal-directed activity” were now enough to qualify for what had once been considered a rare and debilitating disease. The lowered diagnostic threshold came along just before the FDA gave the drug industry the go-ahead to market their drugs directly to the public, thus changing forever the meaning of the phrase “Talk to your doctor.” Advertisements touting Zyprexa and Abilify and other antipsychotic drugs as treatments for the new disease soon appeared; suddenly twice as many people had bipolar disorders as previously thought, and antipsychotics rocketed to the top of the charts. Some key opinion leaders were suggesting to their colleagues that many of their patients—indeed as much as 5 percent of the population—weren’t depressed but rather were on the “bipolar spectrum,” which is why they weren’t responding to antidepressants and should be switched to antipsychotics.

“We couldn’t have foreseen any of this,” Frances said. But he did see it happening, and he failed to use his clout as head of the DSM-IV to speak out against it. He had also remained silent when he was vice chair of the APA’s program committee in the 1980s and the pharmaceutical industry had all but taken over the organization’s training programs. And there was one other time he had not spoken up, and he now regretted it. Early in his training at the New York State Psychiatric Institute, he had taken on a patient, a medical student. He had diagnosed him with
pseudoneurotic schizophrenia
¹⁵
—“a local concoction invented by the PI director,” Frances remembered, “and one that everyone seemed to us to have.” The effect of this diagnostic fad on the patient, who Frances thinks now was merely anxious and depressed, not schizophrenic, was devastating. “We kept him locked up for a year,” he said, and the patient never got back to medical school. “It was the original sin of my career.”

As he toured the museum, Frances said, these failures nagged at him. The prospect of “
more kids getting unneeded antipsychotics
¹⁶
that would make them gain twelve pounds in twelve weeks hit me in the gut.” And if Will Carpenter—“a fine man and a great psychiatrist”—couldn’t see the danger, then no one else was likely to. “I was stuck without an excuse,” he told me. “If not me to correct it, who? If not now, when?”

When the tour was over, Frances found Bob Spitzer’s wife at the party. (Spitzer was too ill to attend.) He told her to tell Spitzer that he’d be joining his crusade. He never returned to his conversation with Carpenter. But Carpenter already knew something momentous had happened. “It was over in seconds,” he said, “but it lasted just long enough for it to be clear that the trigger had been pulled.”