TIME: Almanac 1995

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<text id=93TT2135> <title> Aug. 30, 1993: Tinkering with Madness </title> <history> TIME--The Weekly Newsmagazine--1993 Aug. 30, 1993 Dave Letterman </history> <article> <source>Time Magazine</source> <hdr> ETHICS, Page 40 Tinkering with MADNESS </hdr> <body> Did a UCLA experiment deliberately allow a schizophrenic to fall into a severe relapse? By JAMES WILLWERTH/LOS ANGELES On the morning of April 15, 1987, as he studied for his college entrance exams, Gregory Aller had his first visit from the aliens. "This brilliant white light appeared," Aller, now 29, recalls. "Space aliens were directing this. They told me I was going to become Speaker of the House. Then President Bush and Vice President Quayle would die. As President, I would unite our world with a dying alien planet whose sun was going out." Soon Aller was visiting cemeteries. "I'd put my hands on the tombstones and make mind contact," he says. He would see his deceased grandmother walking through his parents' home. He was convinced that objects in his apartment were pipe bombs. He was worried that a sniper was outside, somewhere, waiting for him. "He was so convincing that I was frightened," says his father Bob Aller. Suspecting that Greg was suffering from schizophrenia, Bob and Gloria Aller sought help from an expert at their alma mater, the University of California, Los Angeles. Their fears were confirmed. But they also received some good news: Greg was eligible for a sophisticated UCLA research project that would provide him with the enormously expensive treatment and medication required by schizophrenia. The Allers felt they had found a way out for their troubled son. Instead they found a descent into hell. The road to science is paved with good intentions. Gregory Aller had volunteered for an experiment designed to study the early years of schizophrenia, the onset of schizophrenic relapse, how to predict relapse, and how to determine who would and who would not be affected by withdrawal of medication. In the short term, that meant Aller would get medicine to make him well. But the long-range realities were harrowing. If he got well, the experiment would follow Greg as medication was withdrawn. If he then became ill, he could fall into the worst stages of psychotic relapse. Last March, Keith Nuechterlein, the project's director, sent a letter to his patients stating that among the findings of the experiment, three-quarters of the people who have been off medication "will experience a return of significant symptoms within a year." In 1990 Greg was among those who relapsed--and, as his condition worsened, his parents claim they could elicit no cooperation or medication from the doctors in charge. Today Greg's parents believe the doctors deliberately triggered his relapse. The Allers had long known their son was troubled. After graduating from Santa Monica High School with good grades, Greg simply stopped attending classes at the University of California at Santa Barbara only one week into his freshman year. Flunking out after two quarters with straight Fs, he made an improbable run for local office, attempted to go into business, and was arrested for false advertising. After serving a 40-day jail term, he returned to live with his parents and make another stab at college. It was then that he saw the aliens. On March 14, 1988, Aller signed his first consent form at the UCLA Neuro psychiatric Institute and became a subject for Phase 1 of Developmental Processes in Schizophrenic Disorders. Twice a month he received a 12.5-mg injection of the antipsychotic drug Prolixin Decanoate. The substance took three months to take effect, but the results were miraculous. "Everything disappeared," Aller says. Gone were the space aliens, his grandmother's ghost, the pipe bombs, the sniper. He enrolled at Santa Monica College to repair his undergraduate record and made the dean's list with a 3.7 GPA. He had no trouble holding down a 15-hour-a-week market-research job. He even got into an advanced scholar's program that guaranteed admission to UCLA. Meanwhile the researchers were preparing him for Phase 2, formally titled Double-Blind Drug Crossover and Withdrawal Project. Says Aller: "In group-therapy sessions, they implied that going into crossover meant that you were a strong person. It would be a better thing to do than being on medication. It meant you were doing well." Greg's parents were ecstatic with his progress. They were, however, wary of Phase 2. They talked to Nuechterlein and Greg's caseworker, Joseph Tietz, a graduate student. "We knew when Greg went into the program that they would take him off medication at a certain point," says Gloria Aller. "They explained to us that this was to test whether he really needed it for the long run." The scientists noted that antipsychotic drugs have powerful side effects, and they were trying to identify patients who might be able to stay off medication and avoid them. Among the drug's possible side effects is tardive dyskinesia, a loss of control over facial and other muscles that can lead some people to stick out their tongues without warning. Gloria Aller remained concerned. "More than once I asked them, `If he starts to slip, you'll put him back on medication?'" She says the staff assured her they would. On June 1, 1989, Greg Aller signed his second consent form. The form blandly said the study's "purpose" was "to take people like me off medication in a way that will give the most information about the medication, its effect on me, on others and on the way the brain works." Further, the clinic promised it would use "active medication again to improve [Aller's] condition" if he showed "a significant return to symptoms." While the statement said there was a possibility that Greg's condition might worsen, the only pain specifically mentioned was bleeding from injections. As it turned out, the suffering would be much more severe. While Greg and his parents understood that Phase 2 dealt with identifying schizophrenia patients who could be treated without continuing doses of Prolixin, the Allers last year came across a document they thought suggested that the doctors had a somewhat different agenda. In a 1988 paper, based on data from UCLA's experiment, Nuechterlein and one of his graduate students reported on early, or "prodromal," signs of schizophrenic relapse. They noted that their study differed from earlier studies in following research subjects in relapse "to the severe or extremely severe level." In contrast to other studies, the paper claimed, this study was not constrained "by the necessity to increase medication to avoid a possible relapse." In the last half of 1989, Greg alternated medicine with a placebo until the Prolixin was completely withdrawn. "In October and November, I started having delusions about Ronald Reagan and the space aliens," says Greg. "I thought I'd seen some space aliens walking around cloaked as humans. Through mind contact, they told me they wanted me to help them infiltrate the U.S. They were already infiltrating police departments and the government. "As a reward for my help, they would make me President," says Aller. "Bush knew about their plans, but they said he was afraid of them and wouldn't let them land their ships. My first job was to run for the L.A. County Democratic Central Committee." But, he says, "Ronald Reagan had caught on to me through Nancy's astrologer. She told him I was going to ruin everything, uproot his legacy. All his scandals about Iran-contra would come out." Bob and Gloria Aller became alarmed at the change in their son. "He began to get agitated easily," says Gloria. "He stopped combing his hair, and he became rather antisocial." Says Bob: "Suddenly, nobody mattered to him." By Jan. 3 he was so disheveled that Bob called Tietz, Greg's caseworker. Greg was growling in public, sometimes in buses, startling fellow passengers. Tietz saw Greg, noted his "inappropriate laughter" and "swelling eyes," and added that "Greg denies any hallucinations or delusions," according to medical records the family obtained from UCLA. On Jan. 12, Bob recalls, after Greg saw Tietz again, the caseworker told Bob that his son's symptoms were "not severe enough" to remedicate him. Tietz asked Bob to write him a letter. The Allers did, saying, "Our understanding was that there was a safety net of medication available whenever Greg exhibited serious symptoms that impaired everyday behavior." The Allers then met with Nuechterlein and Tietz, and they say they were told Greg's behavior could not yet be called a relapse. It was merely a mood fluctuation and temporary. On Jan. 15 Greg took out a carving knife, walked to the door of his mother's kitchen and called her by her nickname. "Come here, Pooh," he said several times, holding the knife where she could see it. "I thought my mom was possessed by the devil," Greg now recalls. "My plan was to scare the devil out of her, literally." Gloria ran into the bedroom. The Allers began barricading their bedroom door at night. Bob and Greg argued at one point, and Greg kicked his father and threatened to kill him. On Jan. 23 he packed his things and moved out. He was flunking out of school. Two days later, he saw Nuechterlein's partner, Dr. Michael Gitlin, who noted, "Moved out from parents. Says no symptoms present. Finishing the semester." Renting a bunk in a half-empty fraternity house or sleeping in motels, Greg wandered the streets and sometimes attended classes in a daze. "One day in class I decided that President Bush was about to launch a nuclear attack against Russia to confuse the space aliens," Greg remembers. "I rushed out to a phone booth to tell Bush not to do it. I didn't get through." By April, Bob Aller was so concerned that he stormed into the research clinic and confronted Gitlin: "There's something wrong with your methodology. Gregory's sick! He needs help." According to Aller, Gitlin said, "Are you trying to shift the blame to us? The problem is that he is living at home." Replied Aller: "He doesn't live at home. He's too dangerous." In fact, Greg's upbeat performances during counseling and testing sessions worked against his getting medication. "I made this agreement with my parents that if the doctors told me I needed to go back on medication, I would," Greg explains. "But the doctors only said, `Greg, do you think you need medication?' I always said no because I was worried that the space aliens wouldn't approve." Greg's clinical records between January and May 1990 suggest that he apparently fooled everyone--his doctors, his caseworkers, even his parents. Bob and Gloria say they knew nothing of the space aliens. They wanted him back on Prolixin because of his physical and emotional deterioration. By May his parents decided to take matters into their own hands. On the night of May 14, Bob drove his son to a motel and announced that it was the last room he would pay for if Greg did not ask for a shot of medication. Greg had a bad night. After convincing himself that his dad had died of a heart attack, he found himself drinking from the toilet bowl like a dog. "I thought God commanded me to do it," he recalls. The next morning, when he found Bob alive, he thought, "Oops, something's wrong. Maybe something is wrong with me." He went to the UCLA program the next day to be medicated. It took several months and a larger than standard dose of Prolixin to stabilize Greg even a little. He continued seeing aliens through August. At one point he tried hitching a ride to Washington to throw a canister of poison gas at George Bush. (The aliens, he said, "wanted Quayle to be President. They felt they could control him.") He got as far as East Los Angeles. Today Greg Aller is once again in school, part time. He dropped out of the program shortly after his parents began their protests in early 1991; he continues to take Prolixin in tablet form, from a private psychiatrist. His GPA has fallen to 2.8; he feels he is strong enough only for part-time classes; he has symptoms of tardive dyskinesia. "I'm very angry about this whole thing," he says. But he asks with a smile, "Did you know I was born on Friday the 13th?" The experiment's chief co-investigators, Nuechterlein and Gitlin, are constrained by obligations of patient confidentiality from speaking specifically about Greg Aller's case. They maintain, however, that they did not mislead any of their patient-subjects and that the point of the withdrawal phase of the experiment was to learn ways to identify patients who could do without Prolixin. Patients undergoing nonexperimental treatment, they argue, would want to see how well they might do without drugs. The study thus was not any different from a real-life clinical situation. They insist that they were not out to trigger severe relapses and that the Allers and their allies in the bioethical community have misinterpreted their work. But what of the troubling 1988 paper that looks toward severe-level relapses? Says Nuechterlein: "That was a sort of post hoc analysis of data collected up through a certain point and was quite independent of any treatment decisions." And what of the sentence in which Nuechterlein observed that he wasn't constrained by the need "to increase medication to avoid a possible relapse"? He admits, "I think it was not the most ideal choice of wording." "We don't try to produce relapses," says Gitlin. "They occur even as we try not to have them." Adds Nuechterlein: "You could just as easily say we're taking [patients] off to see if they don't relapse at all...We've always said we have to provide excellent clinical care." Nonetheless Nuechterlein and Gitlin's original research protocol, in effect their project's blueprint, says in its "study termination" section that patient-subjects taken off medication in Phase 2 will stay off it until they withdraw from the experiment or, more ominously, until severe psychotic relapse or exacerbation occurs. "The expectation of relapse was an integral part of the research design," says Jay Katz, an eminent Yale bioethicist who has read the experiment's papers. "This is particularly problematic because of the continuing controversy in psychiatric circles as to whether relapse leads to additional, at times irreversible, injury." Nuechterlein, he says, should have been aware of studies that indicate that relapse rates can be as high as 80%. Katz goes so far as to say that the UCLA experiment is part of a long and tortured history of human experimentation in which a patient's right to "informed consent" was not adequately protected. "It is ironic that the risks of a needle prick were set forth in exquisite detail," writes Katz. The UCLA researchers have their defenders. Says Donald Richardson, vice president for the National Alliance for Research on Schizophrenia and Depression: "Any kind of program that attempts to make changes in the therapy of mentally ill folks has a right to be not successful all the time--or changes will never be made. Mistakes may be inevitable." Katz, however, points out that human lives are involved. "There's a great deal of confusion going on in researchers' minds everywhere whether they are dealing with patients or research subjects," he says. "At UCLA they started treating them as patients and had them evolve into subjects." Says Chris Stone, a bioethicist with the University of Southern California: "We'd have demanded far more justification for an animal experiment." </body> </article> </text>