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It keeps people with schizophrenia in school and on the job. Why won't insurance pay?

Every year, an estimated 100,000 young adults or adolescents in the U.S. experience a psychotic episode. Only 10-20% of them gain access to the holistic treatment approach recommended by the National Institute of Mental Health as the gold standard of care for early psychosis, due to lack of space or because insurance won't cover it.
Illustration by Anna Vignet/KQED
Every year, an estimated 100,000 young adults or adolescents in the U.S. experience a psychotic episode. Only 10-20% of them gain access to the holistic treatment approach recommended by the National Institute of Mental Health as the gold standard of care for early psychosis, due to lack of space or because insurance won't cover it.

After M graduated from high school in California, she got a job at a fast food restaurant making burgers. Her coworkers were chatting over the fryer one day when M got a weird feeling, like somehow they knew what she was thinking. It was like her coworkers could read her mind and were discussing her thoughts with each other.

"I was like, are they talking about burgers or are they talking about me?" says M, now 21. NPR has agreed to identify M by her middle initial because she fears the stigma around her mental illness could disrupt her career path.

There was one coworker in particular, a guy she had a crush on, and she was pretty sure he was watching her. She suspected he hacked into her phone so he could listen to her conversations, find out where she was and follow her around. If she was walking down the street, or hanging out in the park, she saw him. Her mom remembers M wanted to sleep with the lights on, repeatedly asking her through the night, "Mom, is someone here?"

A crisis, a hospital stay, a rare referral

One day, her mom said M got so paranoid, so scared, she locked herself in the bathroom and just screamed and screamed and screamed.

Her mom wanted to call for help. But she didn't have a job at the time. This was about a year into the pandemic, and the hotel where M's mom worked had been closed since the first lockdown. When she lost her job, she lost her family's health benefits, too. "My husband was like, 'What is that going to cost?'" her mom remembers.

M's mom called 911 anyway. In the hospital, M was diagnosed with schizophrenia and within a few weeks she was enrolled into a specialized two-year outpatient treatment program at the Felton Institute near San Francisco. Her relatively quick path into effective treatment is highly unusual for patients like her.

M is one of100,000 young adults or adolescents who have a psychotic episode every year in the US. A psychotic episode is characterized by hallucinations, like hearing or seeing things that are not there; delusional beliefs; and paranoia.

On average,it takes people a year and a half to get into meaningful treatment, if they ever do at all. About 80 to 90% of affected young people inch through the country's fragmented mental health care system, many struggling to find a clinician with adequate training in psychosis.

Only 10 to 20%, including M, find space in one of the holistic treatment programs recommended by the National Institute of Mental Health as the gold standard of care for early psychosis. That's because these programs rarely have enough slots available for the people who need there, and because health insurance companies typically refuse to cover the full cost of these programs, even when they are available.

But M is considered one of the lucky ones. Through her state-based public insurance, she never paid a dime for any of the care she received at the Felton Institute's early psychosis program.

A suite of wrap-around services

For two years, M was surrounded by a team of providers looking out for every aspect of her well-being, including a physician, who prescribed antipsychotic medications and a psychotherapist, who did weekly therapy with M to work through her paranoia and delusions.

But the program also provided an occupational therapist, who would go with M to the gym, or coach her through conflicts she had with her friends; a peer specialist who had also been through psychosis and could relate on a personal level; a family support specialist who worked with M's mom; and an education and employment specialist, who helped M look for a job.

Treatment that leads to independence and a career

At first, M wasn't interested in work. Her new medications made her really tired. Fatigue is a common side effect of antipsychotics, and that was layered on top of her already low motivation, which is a common symptom of schizophrenia.

"Since I didn't really have anything to do, I would just take super long naps during the day," M recalls.

But then she met Monet Burpee, Felton's job coach. On a typical workday, Burpee will drive her clients to the local mall or downtown shopping district, charting their path according to the "Help Wanted" signs. Together, they'll chat with store managers about open positions, then sit down and fill out the applications together.

Burpee says helping her clients who have psychosis find work is about more than landing a paying job; it's also about helping them see themselves differently — as independent, career-oriented people, rather than permanent patients dependent on government support programs such as Supplemental Security Income (SSI).

"If you work, you're going to notice a huge improvement in your self-esteem," she tells them. "It has better long term, positive results versus you just sitting around on SSI."

Monet Burpee (right) talks to the manager of a restaurant in Redwood City, CA on one of the job-scouting expeditions she undertakes on behalf of patients receiving a suite of interventions and services for psychosis.
/ April Dembosky/KQED
April Dembosky/KQED
Monet Burpee (right) talks to the manager of a restaurant in Redwood City, CA on one of the job-scouting expeditions she undertakes on behalf of patients receiving a suite of interventions and services for psychosis.

This is what she told M, and when she was ready, the two of them went to the mall on a job scouting expedition. They filled out the applications together. "Next thing I know, I was being interviewed and I got hired," M says.

She started out as a cashier at a new fast food restaurant and within three months she got promoted to a manager role. Now Burpee is coaching her on how to ask for a raise. "She has a brand new car," Burpee says, beaming with pride. "She's meeting new friends." For M, it was just one step in her long-term recovery plan.

"I want to focus on getting a degree, to get a better career," she says.

A revolutionary idea for treating schizophrenia

The Felton Institute's early psychosis program is one of about 50 in California and 350 in the country. They were started about fifteen years ago with what was then a revolutionary idea.

Back in the 1980 and 90s, doctors didn't really know what to do with schizophrenia, and they didn't have many options. They prescribed doses of antipsychotic medications that were so high, they turned people into zombies. They advised patients to give up on any career ambitions and sign up for disability payments instead. Even today, some doctors still see schizophrenia as a lost cause. "There's a real failure to appreciate how much potential there is to manage the illness and symptoms," says Dr. Daniel Mathalon, a psychiatrist with UCSF's early psychosis program.

Around the turn of the century, a new generation of doctors started thinking: What if we ask patients what they want and actually work with them toward full recovery?

"It's not just about stabilizing you clinically. It's about making sure we don't lose track of your future," says Tara Niendam, a child psychologist who runsthe early psychosis clinic at UC Davis. "You should be in college. You should be living on your own."

With other conditions like diabetes or cancer, the sooner people get into care, the better they do. The same is true of psychotic illness. Upwards of 80 studies from early psychosis clinics show that patients see a greater reduction of symptoms, like voices or delusions, and a greater improvement in functioning at school, at work and in their social lives, compared to people who get treatment as usual.

Dr. Tara Neindam at the UC Davis Behavioral Health Center in Sacramento on Feb. 7, 2023. Dr. Niendam is a licensed clinical psychologist with training in assessment and treatment of youth at risk for, or in the early stages of, psychosis.
/ Beth LaBerge/KQED
Beth LaBerge/KQED
Dr. Tara Neindam at the UC Davis Behavioral Health Center in Sacramento on Feb. 7, 2023. Dr. Niendam is a licensed clinical psychologist with training in assessment and treatment of youth at risk for, or in the early stages of, psychosis.

There are a few reasons why earlier treatment is more effective, Niendam explains. People respond more quickly to medication given earlier and at a lower dose, so they have fewer side effects that make them want to stop taking them.

In addition, when symptoms are new, patients are more curious about their psychotic experiences, and more willing to question their delusional beliefs. And their families are also more curious, and more willing to stay involved in treatment, she says.

Building circles of ongoing support

This is one reason the early psychosis programs put a lot of emphasis on supporting the families who are supporting the patients.

M's mom found she needed almost as much help as her daughter did after the diagnosis. She blamed herself. She started meeting once a week with Mike Krechevsky, Felton's family specialist. He walked her through what schizophrenia was and wasn't, explained that it was no one's fault, and helped her manage her own feelings about it so that she didn't pass them on to M.

"When you express anxiety to your child, they don't feel as though they have any capability of going out in the world, stumbling, falling, picking themselves up, learning from their mistakes, and moving forward," Krechevsky says. "If you continue to do that, they're never going to recover."

A reverse disparity with insurance coverage

Normally, the separate and unequal health systems in the U.S. favor the wealthy. But in an unusual twist, M and her family were able to get access to such comprehensive, holistic care after her psychotic episode primarily because her mom had lost her job and her commercial insurance plan.

That's because states and the federal government, through block grants and public coverage such as Medicaid, provide most of the funding for early psychosis clinics, an investment that amounts to tens of millions of dollars every year.

Government officials believe that expenditure will save money in the long run, becausewithout sufficient treatment, people with schizophrenia tend to deteriorate to the point that they end up on disability benefits, in a group home, on the street or in jail – all things the government pays for.

But commercial insurance companies, like Anthem or Blue Shield, don't face those risks. They don't have the incentive to cover full-scope psychosis treatment, and most of them don't.

This means low-income families with public insurance like Medicaid, which in California is called Medi-Cal, have more access to this gold standard of care, while working and middle class families covered by private insurance plans usually cannot.

"It is a reverse disparity," said UC Davis' Niendam during testimony before a state senate committee, about the impact of this disparity at the early psychosis clinic she runs in Sacramento.

"I can give the Rolls Royce of care if you walk in and you have Medi-Cal," she said. But "60% of Californians have commercial insurance. That's 60% of kids who can't get care; 60% of kids whose parents call me crying when I tell them they can't access my clinic."

Turning aways patients with the wrong coverage

It's the same at the Felton Institute in the Bay Area, according to early psychosis director Adriana Furuzawa. For every one person who has Medi-Cal and is eligible for care at her clinic in Alameda, she says , there are another two with commercial insurance who are turned away. In 2022, they turned about 100 people away.

"It was very difficult to think that behind each number, there is a young person, there is a family, that we're saying no to, when we have the resources right here," Furuzawa says.

So what happens to these kids? Generally, they're on their own to find a psychiatrist and therapist who accepts their insurance. Health plans will pay for these medical services. But they won't cover the other crucial components to the care: the job and education support, the peer specialist, the family coach.

This amounts to discrimination, health advocates argue. If someone has cancer, insurers would never just pay for surgery and radiation, but not chemotherapy.

"It's a package of services," says David Lloyd, former chief of policy at the Kennedy Forum. "So the idea that you can split apart the package of services and only reimburse for little components of it, really destroys the whole evidence base of what the service is."

This almost happened to M. A few months into her treatment, her mom got her job back at the hotel, and the family was again covered by her commercial insurance plan. In most counties in California, this would have meant M got kicked out of the program. Her mom said there would have been no way she could afford to pay for a job coach, a family coach, and a peer specialist on her own.

"I couldn't do it. I would definitely stop all the help," she says, even though that help was critical to keeping M healthy. Maybe she would have turned to Craigslist to find other parents to talk to, she said, or looked up mental health advice on YouTube to pass on to M. "I just hope and pray for the best."

States seek solutions to coverage gaps

In 2022, state lawmakers in California wanted to help families like M's, by forcing insurance companies to cover the full spectrum of early psychosis treatment. Lawmakers in one state, Illinois, enacted a law like this already, while those in Massachusetts and Virginia are working on a similar effort. But the proposal in California,Senate Bill 1337, died under pressure from the insurance lobby.

Historically, insurers have not covered the costs of non-medical services provided by non-licensed staff, like job or family coaches. More importantly, they do not like being cornered into covering specific treatments, said Nick Louizos, a lobbyist with theCalifornia Association of Health Plans, a trade group that represents companies like Anthem, Blue Shield and Kaiser.

"Science evolves. Research evolves. There could be evidence-based techniques that are better in the future," Louizos said during testimony at a state senate health committee hearing.

While there arescores of studies that show the treatment works in the short-term — people are more likely to stay in school, in jobs, in treatment, and out of the hospital — the treatment hasn't been around long enough to know how long the positive effects last.

"There is a lack of evidence of this model's long-term effectiveness," Louizos said.

Perverse incentives to drop private coverage

The private insurance restrictions create a perverse incentive for middle-income families who need help now. Some parents are so desperate to give their kids the best care, they actually drop them from their health plan and enroll them in Medi-Cal so they can access county-funded clinics like Felton.

Some counties, including Sacramento and San Mateo, have taken an even bolder step. Health officials there determined that denying young people the full suite of care is unethical, so they decided to use county taxpayer dollars to pay for any services that private insurers refuse to cover.

In the end, this extra support at the county level is what allowed M to stay in the Felton program.

But all of these workarounds are problematic, according to Lloyd. For-profit insurance companies are essentially making more profits by allowing the public to pay their bills.

"That's not an appropriate role for taxpayers to be picking up that burden," he says. In addition, the lack of funding from private insurance reimbursement is stifling the growth that's needed in these programs to hire more employees and provide care for all the young patients who need it.

In California, an alternate pathway to full coverage?

In California, expanded coverage and access could be arriving soon, via a different legal mechanism.

A novel 2021 California law was designed to expand the kinds of mental health care insurers are required to cover. Under this law, SB 855, health plans must make mental health coverage decisions based on expert-recognized guidelines for treatment, rather than their own internal, often arbitrary or cost-driven, criteria.

Multiple agencies, including theNational Institute of Mental Health, theCenters for Medicare and Medicaid Services and theAmerican Psychiatric Association, all recommend full-scope early psychosis care for treatment of a first psychotic episode.

Since this story was first published last spring on KQED.org, California's largest state health regulator, the Department of Managed Health Care, finalized guidance that explicitly requires insurers to cover full-scope early psychosis care, and is incorporating that guidance into the official rules that will be used to enforce SB 855. The final version of the regulations is expected to take effect in spring of 2024.

M and her family haven't had time to follow all these legislative battles and policy changes. All they know is that the full-scope early psychosis care has been life changing.

M has struggled recently with some of symptoms at her new fast food job. The difference is that now she knows what's happening. She has new skills to help quiet the voices. She knows her mom will understand and support her. And she knows there are half a dozen providers at Felton who will pick up if she calls for help.

When her mom thinks about the generosity of those providers, or the luck of landing in a county that stepped up and paid for all of M's care, she thinks about her own father. He was a doctor in the Philippines, and none of his patients had insurance. If they didn't have money, he treated them anyway. "I remember people paying him with chicken and rice," she says.

She thinks, maybe all the help M got was because of him. Maybe it was her dad's karma paying off.

This story comes from NPR's health reporting partnership with KQED and KFF Health News.

Copyright 2024 KQED

April Dembosky is the health reporter for The California Report and KQED News. She covers health policy and public health, and has reported extensively on the economics of health care, the roll-out of the Affordable Care Act in California, mental health and end-of-life issues. Her work is regularly rebroadcast on NPR and has been recognized with awards from the Society for Professional Journalists (for sports reporting), and the Association of Health Care Journalists (for a story about pediatric hospice). Her hour-long radio documentary about home funeralswon the Best New Artist award from the Third Coast International Audio Festival in 2009. April occasionally moonlights on the arts beat, covering music and dance. Her story about the first symphony orchestra at Burning Man won the award for Best Use of Sound from the Public Radio News Directors Inc. Before joining KQED in 2013, April covered technology and Silicon Valley for The Financial Times, and freelanced for Marketplace and The New York Times. She is a graduate of the University of California at Berkeley Graduate School of Journalism and Smith College.
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