Early intervention could change nature of schizophrenia Programs aims to prevent psychosis or halt the decline often seen in schizophrenia

Liz Szabo | USA TODAY

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Tiffany Martinez was in a freshman history class at the University of Southern Maine when she was startled by a female voice.

She whipped around to see who it was.

No one was there.

Martinez was just 17 and away from home for the first time. And while she didn't understand what was happening to her, she knew it was far more serious than homesickness.

Martinez, whose father suffers from schizophrenia, was experiencing the first signs of psychosis, a condition in which sufferers lose touch with reality. Most young people with psychosis spiral downward into delusion and disability, even as their families desperately try to find help.

This sort of decline was considered inevitable in schizophrenia. Without help, about 70% of people who experience a first psychotic break suffer a second round of psychosis within a year.

Martinez is getting help through an innovative approach that aims to surround young people with services and support after their first episode of psychosis.

"First episode" programs aim to change the trajectory of schizophrenia from one of tragic decline to one of a chronic but manageable condition, says Thomas Insel, director of the National Institute of Mental Health. Studies suggest that early intervention can halt the deterioration so often seen in schizophrenia, allowing young people to get their lives back on track after their first full break with reality, Insel says.

In a series of stories over the past seven months, USA TODAY has documented the failures of the mental health system, exploring the human and financial costs the country pays for not caring more about the 10 million Americans with serious mental illness. Now, USA TODAY is devoting the final stories in this series to innovative approaches that offer real hope.

Ron Manderscheid, executive director of the National Association of County Behavioral Health and Developmental Disability Directors, says early intervention is one of the most exciting developments in his 40 years in the mental health field.

"If you can get at it early enough, before it becomes too severe, there is a very good chance that the person will recover, which is just very, very exciting," Manderscheid says.

As states have cut back on psychiatric help, hospitals have had to ration their care, often providing beds to patients only after they have tried to harm themselves or others. Many people say they have been unable to get help until their mental illness was at an advanced state — and their lives were in ruins.

Early intervention programs flip that around, providing a suite of mental health services early in the disease with the goal of keeping patients out of the hospital. The programs aim to reach people before they turn to "self-medicating" with drugs or see their lives go off the rails by dropping out of school, losing a job, getting arrested or becoming homeless, Insel says.

Intervening early has the potential to both save money and avert suffering, says Ron Honberg of the National Alliance on Mental Illness. A small Australian study, for example, found that early intervention cost only one-third as much as traditional mental health care because participants spent less time in the hospital and outpatient care.

Getting help wasn't easy for Martinez.

Her mind, once focused and sharp, was becoming overrun with suspicion and fear. Everywhere she went, people seemed to be watching her. She had begun to see shadowy figures out of the corner of her eye and suffer from irrational fears, worrying that the trees in her courtyard were about to crash down on her.

She often lay in bed, shutting down to cope with overwhelming thoughts and terrifying sensations, unable to respond when people spoke. She planned ways to die.

Martinez's closest family was four hours away, on a Native American reservation in northern Maine, near the Canadian border. Her mother had died when Martinez was 8 and she hadn't seen her father, who is homeless, in years. But her high school boyfriend and the aunt who had raised Martinez begged her to get help.

Although Martinez was nervous about going outside, she was willing to venture downstairs, to the university health center located on the ground floor of her dorm. There, she encountered a nurse who had recently learned about the early symptoms of psychosis and research being conducted at the Maine Medical Center, located about half an hour from campus.

A social worker named Sarah Lynch offered to meet Martinez on campus. Within a week, Martinez had begun treatment, which included counseling, low doses of medication and education about mental illness, to help Martinez understand what was happening to her.

"I didn't have the language or education to even know what I was dealing with," says Martinez, now 27 and living in Portland, Maine.

But unlike people with more advanced mental illness, Martinez still had insight into her condition and realized she had a problem, Lynch says. At later stages of mental illness, many people no longer recognize that they're sick, making them less willing to accept help or take medication.

The early intervention program offered Martinez "one-stop shopping," providing a range of services under one roof, Lynch says. That's a big difference from conventional mental health care, in which patients have to travel around town to get all the services they need, from medical prescriptions to substance abuse counseling.

Counselors talked to Martinez about managing her illness — recognizing stress and finding ways to cope, to reduce the risk of triggering psychotic episodes. Program staff also hoped to work with Martinez's family. Because her aunt and uncle lived so far away, staff reached out to a cousin who lived nearby.

"Family education is important, partially because when psychotic symptoms or manic episodes develop, sometimes the family notices the change before the patient does," says Keith Nuechterlein, who directs the early psychosis program at the University of California-Los Angeles. "That can help you head off an episode before it gets full-blown."

The benefits of early intervention | Cost of Not Caring Tiffany Martinez got early, comprehensive treatment after she began developing symptoms of psychosis at age 17. Now, at 26, she works as a psychiatric nurse practitioner, hoping to help other people suffering from mental illness.

Parents don't often understand what is happening to their child, says psychologist Carrie Bearden, program director at UCLA's Center for the Assessment and Prevention of Prodromal States, which studies young people at high risk of psychosis. "Often, these families have no knowledge of mental illness," Bearden says. "From their perspective, their child may be lazy or affected by demons."

To help Martinez stay in school, staff at the early intervention program wrote a letter to her university, attesting to the fact that Martinez was suffering from a medical condition that warranted special accommodations under federal disability law. Program staff asked that Martinez be given extra time to complete assignments and be allowed to have someone else take notes for her.

"At first, I didn't want accommodations," Martinez says. "I had such pride. I had always done well in school and gotten great grades."

Even before people become fully psychotic, many with schizophrenia develop serious problems with memory and reasoning, similar to those seen in Alzheimer's disease, Insel says.

Brain scans show that people who experience psychosis lose gray and white matter, leading to declines in attention, problem-solving and the ability to organize and plan, Nuechterlein says. For many people with schizophrenia, this cognitive decline proves to be the most disabling part of their illness and is even harder to deal with than hallucinations or voices.

Most of the deterioration caused by schizophrenia occurs within the first five years after an initial psychotic episode, suggesting there's a critical window to intervene, Nuechterlein says.

Studies of early intervention in other countries — Canada, Australia and Denmark — have found significant benefits.

The National Institutes of Health is testing early intervention through a major study called RAISE, or Recovery After an Initial Schizophrenia Episode. The study has generated enormous excitement across the mental health world, even before its results have been released. The federal government already allocated $25 million — or 5% of federal mental health block grants — to implement RAISE-style services in every state in the country. New York City has launched its version of the program, called OnTrackNY, and there are similar programs in Baltimore and Oregon.

"If we want to figure out the best way to spend our mental health dollars," Honberg says, "this is where we ought to do it."

The Maine program takes a slightly different approach than RAISE, aiming to reach young people who are at high risk but not yet fully psychotic.

Researchers developed the program based on studies showing that people with schizophrenia often experience tell-tale symptoms — such as suspiciousness, difficulty concentrating and a drop in grades or work performance — up to a decade before their first psychotic episode, during what scientists call the "prodromal" phase of the illness, says William McFarlane, who directs the Maine initiative, called the Portland Identification and Early Referral program.

In some ways, the prodromal period of schizophrenia is akin to the hardening of the arteries that can lead up to a heart attack, McFarlane says. About one-third of those with prodromal symptoms develop full-blown psychosis within two years.

Early results from Maine have been positive.

In the Portland area, for example, the number of people hospitalized for first psychotic breaks fell by 26% after the PIER study was launched, an April study found. That's particularly striking, given that the number of these hospitalizations rose by 8% in other urban parts of Maine during the same time period, McFarlane says.

Results of the Maine model have been encouraging enough to inspire similar programs in Michigan, New Mexico, New York, Oregon and parts of California.

Mental health advocate Patrick Kennedy, the former Rhode Island congressman who co-founded One Mind for Research, has become a champion of early intervention. He notes that young people who get help early typically need lower doses of medication than people whose illness is treated at more advanced stages. Because lower doses of medication tend to cause fewer bothersome side effects, people are more likely to stick to their treatment plans, he says.

While Nuechterlein is hopeful about early intervention, he's also realistic.

"We don't know how to completely prevent psychotic episodes," Nuechterlein says. "But if they are in regular treatment, you can usually catch the episodes early. Most of the time, they don't end up going to the hospital."

Scientists now are trying to find better ways to predict which young people with prodromal symptoms are most likely to develop full psychosis. In addition to interviewing young people at high risk for psychosis, researchers at UCLA and elsewhere are looking for biomarkers — such as changes seen on brain scans or blood tests — that might foretell a psychotic break.

Doctors hope to eventually develop a tool that's at least 80% accurate in predicting psychosis, Nuechterlein says.

Figuring out which young people are most likely to become psychotic is important, because it could help doctors provide treatment to those who need it most, while avoiding giving heavy-duty medications to those who don't need them, Bearden says.

Bearden's team recently interviewed Thelma, who is 19 and working on her GED.

"I feel kind of good that they're studying this," says Thelma, whose last name is being withheld by USA TODAY to protect her privacy. "I feel like I'm helping them as much as they're helping me."

Thelma spent a day at UCLA this summer, talking to researchers about her anxiety and depression and undergoing an EEG, or electroencephalogram, to give researchers insight into any brain changes that might be associated with psychosis.

Thelma dresses fashionably and speaks articulately about her illness. But her smile hides a host of anxieties. She sometimes sees things that aren't there. Thelma worries about the men who loiter outside her apartment building, leering at her and catcalling as she passes by. She tells a researcher that she suspects that they're watching her when she showers or changes clothes. She has begun rolling up towels to cover even the smallest crack between the door and its frame, just in case the men have installed hidden cameras.

The benefits of early intervention | Cost of Not Caring Dr. Carrie Bearden of the Semel Institute for Neuroscience and Human Behavior, talks about a research program that hopes to determine how to predict the development of psychotic disorder.

"I get feelings I can't control or explain, mostly when I'm stressed," says Thelma, who shares a small cramped apartment with her mother, her brother, his wife and his baby. "I feel so overwhelmed, I just go in the closet."

As in so many areas of mental health, Bearden says, the need for services for people at high risk of psychosis far outstrips the supply.

UCLA's prodromal program, for example, is one of the most established in the country but gets by on a budget of just $300,000 a year, using graduate students to make up for the small staff, Bearden says. That gives her just enough money to study participants — but not to provide treatment.

Many young people can't afford or access treatment, Bearden says.

Although the Affordable Care Act requires that commercial plans offer mental health as a basic service, many plans require steep co-payments or high deductibles, Bearden says. Insurance plans often include a limited number of mental health providers, many of whom have long waiting lists.

Even when plans provide some coverage for mental health, "dealing with all the red tape, figuring out who to call, is too much for patients who are feeling overwhelmed already," Bearden says.

Although Thelma saw a counselor when she was in high school, she has used up all of the visits allowed under her insurance plan. She's no longer in treatment.

Thoughts of suicide continued to haunt Martinez, even after her delusions subsided.

"I struggled with that for a long time," Martinez says. When things got hard, suicide "just seemed like an option for me."

About one in 20 people with schizophrenia kill themselves within the first two years after their initial psychotic break, Insel says. The brightest, most accomplished young people are the most at risk, perhaps because they have the greatest sense of loss after becoming ill.

Martinez says she berated herself for failing to achieve everything she had wanted.

"I was really hard on myself," Martinez says. "I had always set high standards, and not to be able to meet those standards was really hard for me. I would think, 'I can't do this. I'm stupid. I'm not going to graduate. This is awful. I'll have to pay all this money and go back home and live with my aunt and uncle."

Through counseling, Martinez learned to change negative patterns of thoughts. Five years ago, she was able to work with her doctor to stop taking antipsychotic medication — something few others manage to do, Lynch says.

Today, Martinez credits the program with saving her life.

Martinez not only graduated from college, but went on to earn a master's degree in nursing. In September, she began work in Portland as a psychiatric nurse practitioner.

That's a dramatic change from her early ambitions to study criminal justice and law enforcement.

Her new goal is to help people with mental illness avoid the criminal justice system and lead healthy lives, giving other people the kind of life-changing help that she received — and her father never has.

Her experience with mental illness gives her unique insights and skills that "it would be a shame for me not to use," Martinez says.

Working with others helps salve a long unmet need: to help her father.

The last time she heard from him, he was living in California on the street, without treatment. He seems happy when left to himself and his own delusions, she says, and is upset only when other people intrude on his private world.

Martinez says she constantly wonders what her father's life would have been like if help had been available.

"You feel powerless when you can't help someone that you deeply love," Martinez says. Treating her patients "doesn't make up for that loss in yourself. But being able to do this, to have an impact on other people's lives, is a way to compensate."