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New Clinics in California Seek to Stop Schizophrenia Before it Starts

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Reagan was 19 when she started having hallucinations. (Marvi Lacar/KQED)

Reagan was 19 when she started having hallucinations. (Marvi Lacar/KQED)

The important thing is that Reagan knew something was wrong.

When I met her, she was 23, a smart, wry young woman living with her mother and stepdad in Simi Valley, about an hour east of Ventura.

“Reagan” had just started a program that would train her to be a respiratory therapist. Concerned about future job prospects, she asked me not to use her real name.

Five years ago, Reagan’s prospects weren’t nearly so bright. At 19, she had been severely depressed, on and off, for years. During the bad times, she’d hide out in her room making thin, neat cuts with a razor on her upper arm.

“I didn’t do much of anything,” Reagan recalls. “It required too much brain power.”

In schizophrenia, the loss of insight signals a psychotic break, the formal commencement of the disease itself.

“Her depression just sucked the life out of you,” Kathy, Reagan’s mother, recalls. “I had no idea what to do or where to go with it.”

One night in 2010, Reagan’s mental state took an ominous new turn. Driving home from her job at McDonald’s, she found herself fascinated by the headlights of an oncoming car.

“I had the weird thought of, you know, I’ve never noticed this, but their headlights really look like eyes.” To Reagan, the car seemed malicious. It wanted to hurt her.

Kathy tried to reason with her.

“I’m like ‘honey you know it’s a car, right? You know those are headlights, right?’ ‘Yes.’ ‘So you understand that this makes no sense.’ ‘I know, but this is what I see, and it’s scaring me.’”

In other words, Reagan had insight, defined in psychiatry as the ability to understand that one’s experiences are attributable to a mental illness.

What Reagan saw did not fit with what she believed. She knew she was hallucinating.

A Disease That Unfolds Over Time

In schizophrenia, the loss of insight signals a psychotic break, the formal commencement of the disease itself. Typically, a first psychotic break occurs in a person’s late teens or early 20s. In men, the range is 15-24; in women, 25-34.

Often, says Rachel Loewy, an associate professor of psychiatry at UCSF, the onset coincides with an abrupt change in a young person’s life, such as leaving home for the first time.

“Every November we get a huge influx of people who went off to college, into a stressful environment, heading into finals. That’s when we see a lot of first psychotic episodes.”

Loewy, who has helped develop several early-intervention programs in San Francisco and elsewhere, says schizophrenia’s timeline –- hitting a young person at what should be the brink of independence — can make the disease devastating for parents.

“The [young person] drops out of college, goes home, doesn’t get a job. He or she never transitions to adulthood,” Loewy says.

That first psychotic break can precede a cavalcade of disasters: social isolation, hospitalization, medications with sometimes disabling side effects.

So, what if you could intervene earlier, before any of that? Could you stop the process from snowballing?

At 19, Reagan hadn’t had a psychotic break. She still had insight. That made her eligible for a new type of program taking shape in California that aims to prevent schizophrenia before it officially begins.

The programs draw on research suggesting that schizophrenia unfolds much more slowly than might be obvious, even to families.

A genetic predisposition, perhaps triggered by environmental factors, the thinking goes, sets the course of a process that can play out over months, even years.

New research suggests schizophrenia unfolds much more slowly than might be obvious, even to families.

“You start to see a decline in their functioning,” says Daniel Mathalon, who studies brain development in the early stages of psychosis at UCSF.

“They were doing better in school, now they’re doing worse,” he says. “Maybe they had friends but they’re starting to be more isolated.”

Eventually, these subtle behavioral shifts may take on a surreal quality. A young person may hear faint whispers or hissing, or see flashes of light or shadows on the periphery.

“They lack delusional conviction,” explains Mathalon. “They’re experiencing these things; maybe they’re suspicious. But they’re not sure.”

Scientists have a word for that state of uncertainty: prodromal.

‘We Can Stop the Progression of the Disease.’

Reagan took a screening test developed at Yale University that identified her as, possibly, within the prodromal stage of psychosis.

She was referred to a clinic in an office park about an hour from her house called Ventura Early Intervention Prevention Services, or VIPS, operated by Alameda-based Telecare Corporation and run by an affable former football player with a doctorate in psychology named Barry Boatman.

“If we can slow or stop the progression of that thing as it’s beginning,” Boatman says, “not only are we changing that person’s life, forever, and those who love them, we can save the system millions of dollars.”

There are about ten clinics like this one in California. (Schizophrenia.com offers a resource guide to early-intervention clinics across the U.S. and internationally.) VIPS, which has a $600,000 annual budget, is one of several run by for-profit companies that contract with counties to provide mental services.

Others partner with non-profit providers or research institutions like UCSF or UCLA.

In California, participants pay nothing. The programs are funded out of the state’s Mental Health Services Act, a one percent income tax on millionaires that voters passed in 2004.

That money buys what’s essentially a two-year, full-court press on kids like Reagan, whose symptoms could be early signs of schizophrenia: family therapy, individual therapy, homework help, job counseling, exercise, often medications. Clients can be as young as ten years old.

Ashley Wood, an occupational therapist at Kickstart in San Diego, took Tony, 13, out to an arcade as a reward for participating in family therapy sessions. (Marvi Lacar/KQED)

Ashley Wood, an occupational therapist at Kickstart in San Diego, took Tony, 13, out to an arcade as a reward for participating in family therapy sessions. (Marvi Lacar/KQED)

After meeting Reagan, I went to San Diego to meet Ashley Wood and a 13-year-old named Tony at John’s Incredible Pizza Company, an arcade and all-you-can-eat buffet in a mall just south of town. They were playing Whack-a-Mole.

Wood is an occupational therapist for another prodrome-intervention program called Kickstart, based in San Diego. Tony is one of her clients. He has spiky black hair and wears cargo shorts and a plastic rosary around his neck.

Before he started with Kickstart, Tony had been getting in fights. He was angry at his mom, angry in school. And there was something else.

“I used to see and hear stuff,” he tells me, “like weird objects.”

When I press him for more details, he turns the questions on me. “Are you a reporter?” he asks.

Wood laughs, looking at Tony. “Too many questions, eh?” He smiles.

Wood’s job is to help Tony with basic life skills, such as asking for things he needs without getting frustrated. When the pizza parlor’s ice cream machine sputters, she coaches him on how to ask an attendant for help.

“When he’s frustrated at school or at home, instead of immediately responding,” Wood says, she’s helping him “find a way to communicate.”

“We’re trying to work on the impulse control as well. He’s come a long way, I think.”

Wood is teaching Tony to control his anger and communicate better with his family. (Marvi Lacar/KQED)

Wood is teaching Tony to control his anger and communicate better with his family. (Marvi Lacar/KQED)

An Experiment Before Its Time?

Impulsive, unruly, prone to angry outbursts, Tony sounds like a lot of 13-year-old kids. And that’s what makes this type of program controversial.

Last year, the American Psychiatric Association opted to exclude the idea of “psychosis risk syndrome” from its DSM-5 manual of mental disorders, largely because the screening test is generally considered to be only 30 percent accurate. Of three kids who seem to fit the prodrome, only one will actually go on to develop psychosis, or schizophrenia.

In 2011, a review of prodrome intervention programs called the idea of intervention in pre-schizophrenia “inconclusive.”

One of the most vocal critics of prodrome intervention is Allen Frances, a former professor of psychiatry at Duke University.

“This is an experiment far before its time,” says Frances. “We need to be doing this as research before we spread this across the country and risk the harm to the individuals and risk the misallocation of resources in a society.”

‘We’re running up against the limits of what we can do for patients with chronic schizophrenia.’ – Daniel Mathalon, UCSF

Bill McFarlane, a Maine psychiatrist whose PIER Training Institute helped establish several prodrome clinics in California, says he’s seen clear benefits — including reduced hospitalization rates — in Portland, Maine, where the Portland Identification and Early Referral Program he established served psychosis risk clients for over a decade.

He and other proponents say schizophrenia’s early window may be too precious to miss.

“We’re running up against the limits of what we can do for patients who develop schizophrenia, once it goes to chronic stages,” UCSF’s Mathalon says. “I think this is a direction we have to go in, but we have to do it carefully.”

Of course when you’re the parent of a kid in trouble you aren’t asking those questions.

Before she started the program, Reagan’s mom and step-father, Charlie, say they saw very little future for their daughter.

“I thought we were going to have to take care of her for the rest of her life,” says Kathy. “I thought she’d forever be marginal, forever be medicated. I thought we’d just have to get used to it.”

Today Reagan is off all her medications. She’s animated, playing board games with her family, excited about going back to school.

Her family credits the VIPS program.

“We were blessed to have this for her,” Charlie says. “We really were. It saved her life.”

Reagan’s family will never know whether the program prevented her from developing schizophrenia. But even if the diagnosis didn’t fit, they say, the treatment did.

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About the Author ()

Amy Standen is a radio reporter for KQED Science. Her email is astanden@kqed.org and you can follow her on Twitter at @amystanden.
  • Jennifer

    This was a very interesting article that offers hope for some forms of mental illness. Very glad I read it. I am concerned, however, about the pictures of Tony, the 13 yo. Is it ethical to publish pictures identifying a minor in treatment for mental health issues? Could outing him like this cause problems for him later in life? Just not sure it was in his best interests to show his face.

  • Summer Online

    I had exactly the same response as Jennifer. Interesting article, but take the child’s picture off the website, now. This is irresponsible, and I infer from his question (“are you a reporter?”) that he hadn’t given his permission for his story to be made public. And even if he had given his permission, it is nonetheless irresponsible for the journalist to publish his photo.

  • andrea kissack

    Hi. My name is Andrea Kissack, I am the Sr. Editor for Science at KQED. Thanks to both of you for your comments and your concern. We agree that its best to always err on the side of caution when identifying young people. In this case, Tony’s parents, his therapist and Tony himself gave permission for him to be identified in the story. We are choosing to leave the photos up because it’s our understanding his family wanted to tell their story.