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 development4 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 insisted5 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 rethinking6 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 dumbfounded7,” 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 transparent8 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 agreed9 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 Syndrome10. 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 percent11, 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 following12 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 Pincus13 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 idea14”—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 schizophrenia15—“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 antipsychotics16 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.”
Chapter 7
The first time Jay Scully met with his DSM-5 troops, in the spring of 2008, he warned them about what they were getting themselves into. “People are going to write dissertations1 on what you are doing. Reporters are going to be all over you. It’s probably going to be DSM-5: The Musical.”
The drama started almost immediately. The task force appointed Kenneth Zucker, a University of Toronto psychologist, to head up the sexual and gender identity disorders work group. Among the group’s members was another Toronto psychologist, Ray Blanchard. The appointment of two non-American nonpsychiatrists may have helped the diversity statistics, but it infuriated transgendered people, who had a direct stake in the outcome.
Zucker was known for research2 purporting to show that the conviction that one had been born with the wrong sexual organs was acquired and thus, at least in some cases, malleable. He argued that some young children who expressed the desire to be the opposite sex should be discouraged from acting out their wishes, that girls who wanted to play with soldiers should be given dolls and that boys who wanted to wear skirts should be forced to dress like little men, lest they grow up into people with Gender Identity Disorder (GID). For his part, Blanchard had earned the wrath of the transgendered by suggesting that at least some of them did not suffer from having been born with the wrong sex organs, but rather that they derived erotic pleasure from fantasizing that they were the opposite sex, a fetish Blanchard called autogynephilia3.
To many transsexuals, Blanchard’s suggestion that their condition was nothing more than an abnormal sexual inclination—what the DSM calls a paraphilia—seemed to trivialize their suffering, and Zucker’s notion that transgender children could be put back on the right track smacked of the bad old days of sexual reorientation therapy for homosexuals. And they had a very practical concern: surgeons and endocrinologists would not provide sex-change procedures (and couldn’t get paid by insurers) without an official diagnosis of GID. If Blanchard’s and Zucker’s views carried the day, the work group might modify or remove a diagnosis that had been crucial to the gains transgender people had made.
Nearly as soon as the appointments were announced, the protests started rolling into APA headquarters. The National Gay and Lesbian Task Force, which had led the charge against the homosexuality diagnosis in 1973, issued a press release charging that Zucker and Blanchard were “out of step4” and that the APA was not “keeping up with the times when it comes to serving the needs of transgender adults and gender-variant children.” If the irony of pleading with psychiatrists not to take away a diagnosis that explicitly pathologized an inborn condition occurred to them, they did not note it in the communiqué.
In late May, the APA sent out a statement pledging a “thorough and balanced5” revision that would be “based on sound scientific data but also sensitive to the needs of clinicians and patients.” The effort would start with an assessment of “DSM-IV’s strengths and problems,” move to a “comprehensive review of scientific advancements,” and then, using “targeted research analyses and clinical expertise,” generate changes that would be subject to scrutiny from the larger professional community before being assembled into a final draft. There would even be a website where the public could eventually take a crack at the proposed revisions. The process would be orderly, deliberative, rational, nonarbitrary, and, it seemed, prolonged—too prolonged to be getting into particulars at this point.
It was a strange way to make a case for the scientific soundness of the DSM-5. After all, if the revision was going to be scientific, then why would the APA need to be sensitive to the needs of clinicians or patients or, for that matter, anyone else? A revision of cancer nosology based on “scientific advancements” like the increased ability to genotype tumors might conclude that certain patients actually belong in a different diagnostic category from the one they currently occupied. This might render them no longer eligible for treatment—a development that ought to make doctors sensitive to their patients as they deliver the bad news, but one that should not figure into whether or not the diagnosis is revised. As Joseph Biederman might have pointed out, if Galileo had been sensitive to the needs of the priests, we might still think that the sun moves around the earth.
The authors of the APA statement seemed to grasp this problem. After reassuring all the “stakeholders” that they would be listened to, they ended by urging people to recognize that “the DSM is a diagnostic manual6 and does not provide treatment recommendations or guidelines.” Those complaints had evidently gone to the wrong department. Not that such a department existed, at least not yet, but the APA did promise to set up a committee to look into the matter of GID treatment. In the meantime, perhaps because it was so proud of itself for listening to complaints that were, by its lights
, irrelevant, the APA didn’t seem to notice that, as it had when it came to the “paradigm shift,” it was signaling that it would take whatever position was expedient, even if it ended up both asserting and undermining its scientific authority in the same one-page statement.
Scully had barely put out the GID fire when the Psychiatric News ran Spitzer’s letter complaining about the gag order. He teamed up with Regier, Kupfer, and Nada Stotland, then the APA president, to fashion an immediate rejoinder7. Spitzer, they wrote, had misunderstood the intent of the confidentiality agreement. The organization was only trying to protect work group members from any “fear of recrimination” that might pressure them into “premature conclusions and misconceptions,” which might “damage the viability of DSM-V.” They did not spell out exactly who might seek recrimination, or what form it would take, or why, if the process was scientific, any of that should matter. They didn’t explain how sheltering their experts from outside views would help them be sensitive to the concerns of the rest of the world or protect the rest of the world from experts like Joseph Biederman. Neither did they elaborate on the claim that controversy could be harmful, let alone on what it meant to “damage the viability” of the DSM.
But the APA leaders didn’t really think they needed to answer such questions. In fact, in their view, it was Spitzer who had some explaining to do. He had failed to acknowledge the long public record, dating back to the Research Agenda, and including fourteen books and more than eighty peer-reviewed papers, all of which were in the public domain (even if they had been authored mostly by the same experts who were now being protected from controversy). He had given short shrift to the fact that the APA had “invested a great deal of effort to develop a process allowing appropriate communication while protecting the integrity and value of the DSM-V.” And he had misrepresented the agreement by failing to note a parenthetical clause allowing members to divulge material “as necessary to fulfill the obligations of [his or her] appointment.” A member who isn’t quite sure if he or she would be in violation, they added, “can simply ask.” People evidently could say whatever they liked, as long as they got permission.
The Book of Woe: The DSM and the Unmaking of Psychiatry Page 11
