Families Living with Schizophrenia Face a “Cascade of Bills”
An economic analysis recently published in JAMA Psychology estimates that schizophrenia spectrum disorders cost the United States $366.8 billion in 2024, with impacts extending far beyond medical care into public programs and other systems. Drilling down to the individual level, the study found that the 3+ million adults living with schizophrenia disorders face an average annual per person cost of $119,436.
These figures reflect not just health care spending, which amounts to nearly $37 billion nationwide, but the wide range of costs that emerge when people with schizophrenia do not have consistent access to effective, coordinated care.
Joel White
“Living with schizophrenia means living with a cascade of bills for health care services including emergency room visits, hospital stays, counseling or psychotherapy, and medications,” said Joel White, Board Member, Schizophrenia & Psychosis Action Alliance (S&PAA). “It also means living with unexpected costs and barriers relating to housing, transportation, time off of work and more – costs that health insurance does not cover.”
The Opportunity Costs of Schizophrenia
White also pointed to the “opportunity costs” of living with schizophrenia – the value of the time spent (including by families or loved ones) navigating a fragmented care system, finding the right care providers, managing prior authorization requirements, and working through the criminal justice and social services systems.
Gary Labovich is well acquainted with these opportunity costs. He serves as Treasurer on the S&PAA board with White and got involved with the organization after facing many of these barriers when seeking help for his son, who began showing signs of schizophrenia as a high school senior.
Gary Labovich
“After leaving college, he moved to the west coast, but after being dismissed from multiple employment opportunities, he lost his housing and became homeless, living on the streets for nearly two years,” Labovich said. “He got into a few tussles, but the police kept releasing him to the street, where he would essentially disappear. It was then that we discovered how the system breaks down and the costs add up.”
Over nearly 8 years, Labovich worked tirelessly to advocate for his son. He spent thousands of dollars on intermediaries to find him and convince him to get the help he so desperately needed – efforts that ended up being fruitless. Short stays in treatment facilities resulted in him walking out. Labovich spent thousands more on lawyers to enact a conservatorship over his son but could not get any traction. Through it all, privacy laws prohibited the criminal justice system and mental health providers from notifying Labovich about his son’s condition and whereabouts.
“The inability of families to get help for their loved one with schizophrenia is challenging and troubling,” he said. “Money didn’t solve the issue. Having the best health insurance didn’t matter.”
Eventually, a psychotic episode landed his son in the emergency room, where he was referred to a private mental health facility and started on a course of medication and treatment that has since turned his life around. Because his son was disabled, Labovich was fortunate that his son was able to remain on his retired health insurance plan, which covered the cost of his stay at the facility.
Medication Costs Delay Care
Medication costs, which average $5,069 a year per patient, according to the JAMA Psychology study, also can create barriers to effective care for schizophrenia. The injectable medication Labovich’s son takes carries a “prohibitive” out-of-pocket price tag of $13,000 for a six-month period, which his father’s insurance covers.
However, when health insurance doesn’t fully cover the cost of medications, care may be delayed or not accessed, according to White.
“When medication costs more than $500, half of patients will abandon therapy,” he said. “As a result, symptoms get worse, their condition deteriorates, and they are more likely to end up in the emergency room or out on the street.”
Editor’s Note:
Are you or someone you know living with schizophrenia and covered by Medicare? You may be able to receive financial assistance from the HealthWell Foundation. HealthWell’s Schizophrenia – Medicare Access Fund offers up to $4,000 in annual prescription drug copay or insurance premium (Medicare Part B only) assistance for prescription drugs and biologics used in the treatment of schizophrenia.
Resources to Help Families Navigate a Schizophrenia Diagnosis
Navigating any complex illness can be challenging. For those living with schizophrenia, patient navigation services are few and far between.
“When we were trying to get help for our son, we didn’t know where to turn,” said Labovich. “We tried our family physician and a psychiatrist, but nobody had a pathway for us to get him the help he needed medically or with the challenges associated with housing, social isolation, and the justice system.”
S&PAA is working to change this shortcoming in schizophrenia care by empowering individuals to navigate schizophrenia with evidence-based knowledge and skills. They offer a variety of tools and resources with practical advice and encouragement to help patients and their loved ones understand their condition, manage their symptoms, and take important steps toward recovery.
One set of resources is designed for newly-diagnosed people. This includes a 3-part set of guides with general information about schizophrenia, how to achieve stability, and how to make a crisis plan. Companion worksheets are designed to empower both caregivers and individuals diagnosed with schizophrenia to navigate the recovery journey together. The tools foster meaningful conversations and strengthen collaboration between individuals, their support systems, and their treatment teams.
S&PAA also offers a Housing Toolkit to help individuals and families navigate one of the most urgent and complex challenges in recovery – finding safe, stable housing that they can afford. A Caregiver Toolkit provides support for family members, loved ones and professionals caring for those with schizophrenia.
“The costs of uncompensated caregiving are enormous,” said White. “Research shows that about 87% of caregivers spend their own money – up to $1,800 a month – to care for a loved one with schizophrenia.”
“From our toolkits and guides to our Resource Line and confidential, non-judgmental support groups for diagnosed people and caregivers, S&PAA strives to help people living with schizophrenia navigate the real-life complexities they face,” concluded White. “Know you are not alone. There are many walking the same or similar paths who are here to help you get unstuck and to a better place.”
S&PAA also offers resources designed to support schizophrenia care providers. Its recently launched Schizophrenia Center of Excellence is a first-of-its kind initiative to connect, certify, and scale high-quality, lifelong schizophrenia care across the U.S. into an integrated ecosystem. The program is designed to ensure that individuals and families can access not just services, but a connected system of high-quality, evidence-based care across every setting and every stage of illness.
