Several weeks before Aaron Alexis killed 12 people at Washington Navy Yard in September, he told police in Rhode Island that he heard voices emanating from hotel walls. Years earlier, he accused strangers in public places of laughing at him and randomly shot at the tires of a car owned by construction workers near his home.
One of the most tragic and frustrating aspects of Alexis’ case, and that of many other mass shooters, is how their earliest symptoms of mental illness seemed to slip through the system.
Untreated mental illness doesn’t usually erupt in violence, of course. More commonly, delusions, manias, and paranoias simply emerge in adolescence and quietly build, potentially making it hard for their host to function normally in later years. Often, people with schizophrenia or bipolar disorder don’t recognize their symptoms until it’s too late, causing them to depend on treatment with aggressive doses of anti-psychotic medications, which themselves can cause mental fogginess and extreme lethargy, for their entire lives.
But a four-year project from the National Institutes of Mental Health, wrapping up this summer, aims to change that. It attempts to intercept serious mental illnesses when their symptoms first crop up, allowing these patients to return to normalcy quickly—and, the NIMH hopes, permanently.
“The time between the onset of psychotic symptoms and when appropriate treatment is initiated is a critical period,” said Robert Heinssen, a schizophrenia expert who launched the RAISE project. "With what’s called ‘the duration of untreated psychosis,’ the longer it is, the more likely it is you're going to have an unfavorable outcome.”
Psychosis is a symptom, and sometimes a precursor, of schizophrenia and bipolar disorder, commonly considered two of the most debilitating mental illnesses. People experiencing psychosis might believe things that aren’t true, hear voices, or start making profoundly bad decisions.
Writing in Harper’s in 2010, Rachel Aviv describes Anna, a woman whose mother had schizophrenia and for whom the prospect of her own, eventual psychotic break had loomed throughout childhood. After 20-some years of lucidity, one day while walking through an academic building Anna noticed that, “a bust of Plato, which she had never noticed before, seemed to be calling out to her.” She soon began to develop strange ideas, such as that the world was "made up of gasses," and began "blowing on books to see whether they would disintegrate."
“We don't know exactly whether that's going to be schizophrenia, bipolar, major depression with a psychotic feature, or whether it's a brief psychosis that's going to resolve,” said Heinssen. “It's a way station in a process that can take several turns.”
Not everyone who experiences psychotic episodes will go on to develop schizophrenia, but among those who do, the consequences are tragic. Roughly 73 to 90 percent of people with schizophrenia are unemployed. Some recover, but many live in halfway houses, with family, or on the street. One in 10 people with schizophrenia kill themselves, and about 15 percent of people in prison have serious mental illnesses.
And unlike degenerative brain diseases, such as dementia, schizophrenia seems to strike people in the prime of their lives.
“This is a disease that starts in late adolescence, just when people should be becoming independent, and instead they're becoming entirely dependent and disabled,” NIMH director Thomas Insel told me. “It strikes people who seem gifted and might have been on a path to do great things. And all of a sudden, they are wrapped up in delusions that are just so frightening.”
At their worst, serious mental illnesses can drive the people they afflict to hurt others. Though the majority of people who experience psychosis never commit crimes, 38 of the perpetrators in 62 recent mass shootings analyzed by Mother Jones showed signs of mental illness.
Today in the U.S., treatment for psychosis usually only occurs when the person’s symptoms become alarming enough attract the attention of their family, friends, or authorities, and the patients get hospitalized.
From there, “usually someone just sees a psychiatrist, and sometimes they decide not to see a psychiatrist because they may not think they're sick,” Insel explained. Then, if they have another psychotic episode, “People come into the hospital for a brief time, they get medication, it makes the voices go away, they decide they're better, and they go about their business. But they still have schizophrenia, and they get rehospitalized or they end up in jail, where they don't get optimal medical psychiatric care. It's an awful roller coaster for the first few years.”
This path, however, neglects the critical window of time between when the symptoms first occur—when Anna first heard the bust speaking to her—and when medication or therapy is administered.
When treated soon after their first sign of psychosis, individuals are more likely to avoid relapse and hospitalization, studies from Europe and elsewhere have shown.
According to Aviv’s research, there are only about 60 existing clinics that focus on early psychosis intervention, and only about a third focus on the prodrome stage, the time when patients first start to imagine things but before they start to believe that their false beliefs are real.
The NIMH project, called Recovery After an Initial Schizophrenia Episode, or “RAISE,” provides these at-risk individuals with medication at a much lower dose than would be standard for people in the later stages of the disease, along with job and education assistance, and information about their ailment for their families.
“We add in elements of treatment that seem to make sense given their personal goals and ambitions,” Heinssen said. “And if they feel like they're making steps over time, we can retract some of the treatment elements so that it doesn't become a life-time commitment.”
The conversations between patients and social workers, therapists, and psychiatrists all occur under one roof, for better coordination, and patients are helped with the practical aspects of school and work, rather than simply trained to potentially gain employment eventually.
“If someone is sedated due to meds, and that’s making it hard to get to school on time, how can we change the meds so that it works better?” said Lisa Dixon, the director of the Center for Practice Innovations at the Columbia University Medical Center and the investigator who leads the study on the use of the method in community clinics. With RAISE, patients might learn, for example, “how do I explain that I was out for two weeks? What do I put on Facebook? What do I say in a job interview?”
The focus is on getting patients into the most developmentally appropriate jobs and school programs possible.
“People aren’t going into sheltered workshops and sewing or something,” Dixon said. “We try to keep them in their lives.”
Unlike with much of mental healthcare, the RAISE project includes the patient at the center of the decision-making. Patients are typically started at a lower dose of medication and can be tapered off of meds that aren’t working.
Heinssen said that with early psychosis intervention, patients can be trusted to help make treatment decisions because their delusions haven’t yet become fixed beliefs, leaving open an opportunity for therapy and reason.
“For example, if I’m hearing voices and I think that I heard my name, maybe the first time, I get the thought, ‘I wonder if that person was following me.’ But maybe two months later, I hear the same thing and, seeing another person on the street, I think, ‘I get a really strong feeling that this person is part of a group of people who were assigned to watch and monitor me.’” he said. “Maybe the first time, my level of conviction is not high and I could let it go. If this goes on for a long time, though, I can't be talked out of this very easily. However, if it's not yet a fixed belief they might just have therapy.”
The vast majority of the patients in the RAISE program take medication, but a small percentage use only psychotherapy and interaction with social workers.
If this doesn’t sound all that revolutionary, that’s because it isn’t, really.
“All of this stuff was around, but it wasn't being done,” Insel told me. “What RAISE does is build something that’s a little bit like what we do now for diabetes. If you've had a first episode, this is the menu that's available to help, and we're prepared to provide it."
Between a nationwide study and a set of 34 pilot sites, 223 people have been through the RAISE program. In New York, the test program is being continued in the form of “On Track New York,” with roughly 30 patients at four different sites. The pilot study will report its results in a few months, but Dixon says anecdotally that they have been positive so far.
“In terms of our findings, we are in the process of completing our data analysis and have not been subjected to peer review, but we did observe marked improvements over time in employment and school participation, significantly improved vocational and social functioning, significant reductions in symptoms, and elevated rates of remission,” she said.
As with many preventive services, Insel said hammering out a reimbursement system for the RAISE interventions has been a struggle. Most insurers don’t cover its employment support or case management functions, for example. But he hopes to “make a business case” to Medicaid and other insurers by showing that participants are less frequently hospitalized than those who go untreated.
Insel hopes that eventually, though, schizophrenia can become a preventable and manageable disease, much like heart disease has in recent decades.
“We've been treating schizophrenia as a chronic disease,” Insel said. “What we did in cardiology, for example, is we tried to understand how to predict risk. That's the same game plan here.”