EUGENE, Oregon — The first time Jeremy Clark met his 18-year-old client, the teenager was sitting in his vice principal’s office, the drawstrings of his black hoodie pulled tight. Jacob had recently disclosed to his friends on Facebook that he was hearing voices, and their reaction had been less than sympathetic.
So Clark was relieved when a beaming Jacob showed up on time for their next meeting, at a comic book shop. As the pair bantered about “Star Wars” and a recent Captain America movie, however, Clark picked up troubling signs: Jacob said he was “detaching” from his family, often huddling alone in his room. As the visit ended, Clark gave the teen a bear hug and made a plan. “Let’s get together again next week,” he said.
The visit was part of a new approach being used nationwide to find and treat teenagers and young adults with early signs of schizophrenia. The goal is to bombard them with help even before they have had a psychotic episode — a dramatic and often devastating break with reality that is a telltale sign of the disease.
The program involves an intensive two-year course of socialization, family therapy, job and school assistance, and, in some cases, antipsychotic medication. What makes the treatment unique is that it focuses deeply on family relationships, and occurs early in the disease, often before a diagnosis. So far, the results have been striking: In Portland, Maine, where the treatment was pioneered, the rate of hospitalizations for first psychotic episodes fell by 34 percent over a six-year period, according to a March study.
And just last month, a peer-reviewed study published in the journal Schizophrenia Bulletin found that young people undergoing the treatment at six sites around the country were more likely to be in school or working than adolescents who were not in the program. The research was funded by a $17 million grant from the Robert Wood Johnson Foundation.
Proponents do not claim to be preventing schizophrenia. But they say the treatment helps patients remain functioning members of society and avoid chronic disability. These supporters are pressing for a broader use of the approach — and are making progress with state officials. The urgency to find and treat people with serious mental illness has intensified in the aftermath of several mass shootings, some of which were committed by people with severe psychiatric problems.
But some mental health experts, including those at the federal National Institute of Mental Health (NIMH), say more research is needed before the treatment is implemented widely. They warn that there is a risk of exposing to antipsychotic drugs some young people who were never going to develop schizophrenia. Studies have shown that a majority of young people who experience early symptoms, including hearing voices or seeing shadows, never develop schizophrenia or related diseases.
Schizophrenia, which is associated with erratic behavior and delusions, affects 2.4 million Americans. Early intervention is critical, not only because the disease becomes harder to treat with each psychotic episode, but also because a break can be traumatic, with young people ending up in jail or strapped to a gurney in a psychiatric ward.
The onset of the disease often occurs in adolescence, sending promising athletes and straight-A students on a downward spiral that can lead to homelessness or prison, or life in an institution.
“Even now, looking back, I could imagine going the same way you see people on the street,” said Kevin, 21, who takes part in an early-intervention program in Bend, Oregon. He asked that his last name be withheld so as not to hurt his job prospects. “It’s kind of really scary to be able to relate to that group.”
Kevin had been an avid athlete and a good student during his senior year of high school, when he felt “a bunch of splits inside me,” a sensation he later learned was an early sign of schizophrenia. He began hearing whispers and seeing imaginary bugs skitter across his room. Doctors and antidepressants didn’t help. Finally, a family friend recommended the program. It was a lifesaver, he said.
A year later, his symptoms worsened. The voices became louder. He started staying up all night, writing song lyrics on scraps of paper that he would paste all over his walls. The early-intervention counselor recognized that he was having a psychotic break, got him medication and taught him to recognize the signs of things going awry, such as going to bed after 9 p.m. or not playing the guitar.
A large percentage of people with schizophrenia end up on disability. One of the most expensive diseases, schizophrenia costs society about $63 billion a year, including expenses related to homelessness, law enforcement and unemployment benefits.
“It’s kind of mind-boggling what the implications of this [new approach] might be for health and the economy,” said William McFarlane, the psychiatrist and professor at the Maine Medical Center who developed the treatment.
“But it’s not just about the onset of psychosis, which is what a lot of people focus on,” he added. “The real question is: Can you get these kids to function in a normal way in spite of having a risk for psychosis or even having a brief episode? What [our program] says is, ‘Yes, you can, if you have the right treatment.’”
But concerns among federal health officials prompted Congress earlier this year to reject a request from some mental health professionals and state health departments to allow states to use their mental health grants for the pre-psychotic treatment program.
“Not all the questions are known,” said Robert Heinssen, director of the division of services and intervention research at the NIMH and study director for a separate project called RA1SE that looks at similar interventions for people who have had a psychotic break. He said there is much more evidence of the treatment’s effectiveness for people who have had a such an episode.
“The studies that have been done have not demonstrated that the approach is really effective in preventing psychosis, and at the same time there is a growing literature that is telling us that even minimum exposure to antipsychotic medications can have profound side effects in young people, including developing hypertension and weight gain,” he said. “That is not a benign intervention.”
Advocates of the treatment say their screening process is rigorous and weeds out most people who are unlikely to develop psychosis. They add that many patients are never prescribed medication for the illness. Their results have been compelling enough that similar programs are being conducted in Michigan, New Mexico and New York and in five counties in California. Programs are being set up in Delaware and Pennsylvania as well.
McFarlane stops short of saying the treatment prevents schizophrenia, because the disease’s genetic component cannot be treated. But he said that stress plays a role, and that the program works by helping young people manage that stress.
That is how Tiffany Martinez says the program worked for her. While a freshman in college in southern Maine, she began seeing shadows and figures out of the corner of her eye. She began believing that trees would fall on her and took the long way to class to avoid them. Then she found McFarlane’s program.
With the program’s help, she was able to graduate from college, even joining a sorority while she was there, and complete her master’s degree in nursing.
“I don’t think I have schizophrenia,” said Martinez, 26. “It was a process that was starting to be underway. Because I was 17 and my brain was still developing, because of the right medication — the right treatment, including the counseling — I think my brain has been able to recover in such a way that it stopped the progression of an illness.”
The Eugene program is based at PeaceHealth Sacred Heart Medical Center, a local hospital, and provides treatment to about 30 young people from the area, including about half a dozen who have not had a psychotic break. The program is funded in part by Medicaid, private insurance and a $475,000 grant from the state.
The patients, who are in the program voluntarily, have been referred by a variety of people — parents, counselors, teachers, friends. They undergo a rigorous screening process that includes a battery of questions: Are you ever confused about what is real or imaginary? Does time ever seem unnaturally fast or slow? The answers can be startling. One teen claimed on the test that he could smell a friend who lived in a different town.
The therapy touches every part of their lives. Counselors may tell teachers that their clients need more time between classes to avoid crowds, or advise employers that allowing patients to wear headphones on the job will help them drown out imaginary voices. A large part of the treatment focuses on the family; the Eugene program even helped one mother get a job.
Jacque Travis, a Eugene therapist who works with adolescents, has embraced the program because it gives her ways to help young people. Before, there was little she could do for teens who showed up at her practice with symptoms except wait until they had psychotic breaks and involuntarily commit them.
Pre-psychotic teens are easy to spot, Travis said. They might have sleep problems or feel that their minds are playing tricks on them. They may have an odd stance or tilt to their heads. “I can tell they are listening to something else or attuned to something else,” she said.
Jeremy Clark, the counselor, said being a friend to these young people is crucial. “So many of these kids are isolating or distancing themselves from their families,” he said.
Clark often takes his young clients to Nostalgia Comics, a well-stocked comic book store with vintage “Archie” titles alongside current issues of “The Walking Dead.” His clients seem to respond to comic books, he said, with their themes of being different and overcoming hardships.
After the visit with Jacob, Clark wound his car out of the city center into a more hardscrabble area of Northwest Eugene. He pulled up in front of a small house, the parched lawn strewn with bikes. Aaron Divita, 16, bounded out the door, his right arm marked with an angular tattoo and his face stretched into a grin.
When they first met, Clark, with his goatee and dad jeans, was not sure how he would get along with the fashion-forward teen, who has struggled with depression and has a family history of schizophrenia. But the two had clicked, and on that sizzling day decided to cool off at Skip’s Records, where they swapped trivia about musicians ranging from Alice Cooper to Biz Markie.
Amid the chitchat, Clark checked in: How is it going with the voices? “I’ve been tuning it out a bit, with music,” Aaron said. Have you been exercising? “Crunches almost every day,” Aaron said.
Clark bought Aaron a CD — a recent album by Tyler, the Creator, a quirky and controversial rap artist. The sun had dimmed by the time Clark took him home. “Thanks for getting me out of the house,” Aaron called out before racing into his front door.