Anatomy of an Epidemic (17 page)

I attended the 2008 meeting of the American Psychiatric Association for a number of reasons, but the person I most wanted to hear speak was Martin Harrow, who is a psychologist at the University of Illinois College of Medicine. From 1975 to 1983, he enrolled sixty-four young schizophrenics in a long-term study funded by the NIMH, recruiting the patients from two Chicago hospitals. One was private and the other public, as this ensured that the group would be economically diverse. Ever since then, he has been periodically assessing how well they are doing. Are they symptomatic? In recovery? Employed? Do they take antipsychotic medications? His results provide an up-to-date look at how schizophrenia patients in the United States are faring, and thus his study can bring our investigation of the scientific literature to a fitting climax. If the conventional wisdom is to be believed, then those who stayed on antipsychotics should have had better outcomes. If the scientific literature we have just reviewed is to be believed, then it should be the reverse.

Here is Harrow’s data. In 2007, he published a report on the patients’ fifteen-year outcomes in the
Journal of Nervous and Mental Disease
, and he further updated that review in his presentation at the APA’s 2008 meeting.
⁵⁸
At the end of two years, the group not on antipsychotics were doing slightly better on a “global assessment scale” than the group on the drugs. Then, over the next thirty months, the collective fates of the two groups began to dramatically diverge. The off-med group began to improve significantly, and by the end of 4.5 years, 39 percent were “in recovery” and more than 60 percent were working. In contrast, outcomes for the medication group
worsened
during this thirty-month period. As a group, their global functioning declined slightly, and at the 4.5-year mark, only 6 percent were in recovery and few were working. That stark divergence in outcomes remained for the next ten years. At the fifteen-year follow-up, 40 percent of those off drugs were in recovery, more than half were working, and only 28 percent suffered from psychotic symptoms. In contrast, only 5 percent of those taking antipsychotics were in recovery, and 64 percent were actively psychotic. “I conclude that patients with schizophrenia not on antipsychotic medication for a long period of time have significantly better global functioning than those on antipsychotics,” Harrow told the APA audience.

Long-term Recovery Rates for Schizophrenia Patients

Source: Harrow, M. “Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications.”
The Journal of Nervous and Mental Disease
, 195 (2007): 406–14.

Indeed, it wasn’t just that there were more recoveries in the un-medicated group. There were also fewer terrible outcomes in this group. There was a shift in the entire
spectrum
of outcomes. Ten of the twenty-five patients who stopped taking antipsychotics recovered, eleven had so-so outcomes, and only four (16 percent) had a “uniformly poor outcome.” In contrast, only two of the thirty-nine patients who stayed on antipsychotics recovered, eighteen had so-so outcomes, and nineteen (49 percent) fell into the “uniformly poor” camp. Medicated patients had one-eighth the recovery rate of un-medicated patients, and a threefold higher rate of faring miserably over the long term.

This is the outcomes picture revealed in an NIMH-funded study, the most up-to-date one we have today. It also provides us with insight into how
long
it takes for the better outcomes for non medicated patients, as a group, to become apparent. Although this difference began to show up at the end of two years, it wasn’t until the 4.5-year mark that it became evident that the nonmedicated group, as a whole, was doing much better. Furthermore, through his rigorous tracking of patients, Harrow discovered why psychiatrists remain blind to this fact. Those who got off their antipsychotic medications left the system, he said. They stopped going to day programs, they stopped seeing therapists, they stopped telling people they had ever been diagnosed with schizophrenia, and they disappeared into society. A few of the nonmedicated people in Harrow’s study even got “high-level jobs”—one became a college professor and another a lawyer—and several had “mid-level jobs.” Explained Harrow: “We [clinicians] get our experience from seeing those who leave us, and then come back because they relapse. We don’t see the ones who don’t relapse. They don’t come back. They are quite happy.”

Spectrum of Outcomes in Schizophrenia Patients

The spectrum of outcomes for medicated versus unmedicated patients. Those on antipsychotics had a much lower recovery rate, and were much more likely to have a “uniformly poor” outcome. Source: Harrow, M. “Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications.”
The Journal of Nervous and Mental Disease
, 195 (2007): 406–14.

Afterward, I asked Dr. Harrow why he thought the nonmedicated patients did so much better. He did not attribute it to their being off antipsychotics, but rather said it was because this group “had a stronger internal sense of self,” and once they initially stabilized on the medications, this “better personhood” gave them the
confidence to go off the drugs. “It’s not that those who went off medications did better, but rather it was those who did better [initially] who then went off the medications.” When I pressed on with a question about whether his findings supported a different interpretation, which was that the drugs worsened long-term outcomes, he grew a bit testy. “That’s a possibility, but I’m not advocating it,” he said. “People recognize there may be side effects…. I’m not just trying to avoid the question. I’m one of the few people in the field without drug money.”

I asked one last question. At the very least, shouldn’t his findings be worked into the paradigm of care used in our society to treat those diagnosed with schizophrenia? “There is no question about that,” he replied. “Our data is overwhelming that not all schizophrenic patients need to be on antipsychotics all their lives.”

We have followed a trail of documents to a surprising end, and thus I think we need to ask one final question: Does the evidence refuting the common wisdom all hang together? In other words, does the outcomes literature tell a coherent and consistent story? We need to double-check to make sure we are not missing something, for it is always discomforting to arrive at a conclusion so at odds with what society “knows” to be true.

First, as researchers Lisa Dixon and Emmanuel Stip acknowledged, there is no good evidence that antipsychotics improve long-term schizophrenia outcomes. As such, we can be confident that we haven’t missed any such studies in our survey. Second, evidence that the drugs might worsen long-term outcomes showed up in the very first follow-up study conducted by the NIMH, and then it appears again and again over the next fifty years. We can link the authors of this research into a lengthy chain: Cole, Bockoven, Rappaport, Carpenter, Mosher, Harding, the World Health Organization, and Harrow. Third, once researchers came to understand how antipsychotics
affected the brain, Chouinard and Jones stepped forward with a biological explanation for why the drugs made patients more vulnerable to psychosis over the long term. They were also able to explain why the drug-induced brain changes made it so risky for people to go off the medications, and thus they revealed why the drug-withdrawal studies misled psychiatrists into believing that the drugs prevented relapse. Fourth, evidence that long-term recovery rates are higher for nonmedicated patients appears in studies and investigations of many different types. It shows up in the randomized studies conducted by Rappaport, Carpenter, and Mosher; in the cross-cultural studies conducted by the World Health Organization; and in the naturalistic studies conducted by Harding and Harrow. Fifth, we see in the tardive dyskinesia studies evidence that the drugs induce global brain dysfunction in a high percentage of patients over the long term. Sixth, once a new tool for studying brain structures came along (MRIs), investigators discovered that antipsychotics cause morphological changes in the brain and that these changes are associated with a worsening of both positive and negative symptoms, and with cognitive impairment as well. Finally, for the most part, the psychiatric researchers who conducted these studies hoped and expected to find the reverse. They wanted to tell a story of drugs that help schizophrenia patients fare well over the long term—their bias was in that direction.

We are trying to solve a puzzle in this book—why have the number of disabled mentally ill soared over the past fifty years—and I think we now have our first puzzle piece in hand. We saw that in the decade before the introduction of Thorazine, 65 percent or so of first-episode schizophrenics would be discharged within twelve months, and the majority of those discharged would not be rehospitalized in follow-up periods of four and five years. This was what we saw in Bockoven’s study, too: Seventy-six percent of the psychotic patients treated with a progressive form of psychosocial care in 1947 were living successfully in the community five years later. But, as we saw in Harrow’s study, only 5 percent of schizophrenia patients who stayed on their drugs long-term ended up recovered. That is a dramatic decline in recovery rates in the modern era, and
older psychiatrists, who can still remember what it was like to work with unmedicated patients, can personally attest to this difference in outcomes.

“In the nonmedication era, my schizophrenic patients did far better than do those in the more modern era,” said Maryland psychiatrist Ann Silver, in an interview. “They chose careers, pursued them, and married. One patient, who had been called the sickest admitted to the adolescent division [of her hospital], is raising three children and works as a registered nurse. In the later [medicated] era, none chose a career, although many held various jobs, and none married or even had lasting relationships.”

We can also see how this drug-induced chronicity has contributed to the rise in the number of disabled mentally ill. In 1955, there were 267,000 people with schizophrenia in state and county mental hospitals, or one in every 617 Americans. Today, there are an estimated 2.4 million people receiving SSI or SSDI because they are ill with schizophrenia (or some other psychotic disorder), a disability rate of one in every 125 Americans.
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Since the arrival of Thorazine, the disability rate due to psychotic illness has increased fourfold in our society.

In the second chapter, we met two people—Cathy Levin and George Badillo—who had been diagnosed with schizoaffective disorder (Cathy) or schizophrenia (George). We can now see how their stories fit into the outcomes literature.

As I said, Cathy Levin is one of the best responders to atypical antipsychotics that I’ve ever met. She could be Janssen’s poster girl for promoting Risperdal. Still, she remains on SSDI and she perceives the medications as a barrier to her working full-time. Now let’s go back to that moment when she had her first psychotic episode at Earlham College. What might her life have been like if she had not been immediately placed on neuroleptics, but instead
had been treated with some form of psychosocial care? Or if, at some point early on, she had been encouraged to withdraw gradually from the antipsychotic medication? Would she have cycled in and out of hospitals for the next twelve years? Would she have ended up on SSDI? Although we can’t really answer those questions, we can say that the drug treatment increased the likelihood that she would suffer that long period of constant hospitalizations, and decreased the likelihood that she would fully recover from her initial crackup. As Cathy said:
“The thing I remember, looking back, is that I was not really that sick early on. I was really just confused.”

Meanwhile, George Badillo’s story illustrates how getting off meds can be the key to recovery, at least for some people diagnosed with schizophrenia. His journey out of the back wards of a state hospital began when he started tonguing his antipsychotic medication. He is healthy today, he has an evident zest for life, and he revels in being a good father to his son and having his daughter Madelyne back in his life. He is an example of the many recovered people who showed up in the long-term studies by Harding and Harrow—former patients who have quit taking antipsychotics and are doing well.