As many as 1 in every 100 people are living with schizophrenia in the United States. In Delaware, that translates to about 10,000 individuals — members of our families and our communities living with a debilitating but treatable neurodevelopmental brain disease.
Unfortunately, the behavioral health system that is supposed to provide appropriate medical care to people living with schizophrenia all too often fails them, relegating them to substandard medical care, disability, unemployment, incarceration and homelessness. The consequences of this approach are staggering in human, societal and economic terms.
According to a new analysis by the Schizophrenia & Psychosis Action Alliance (S&PAA), the direct and indirect costs for people in the U.S. living with schizophrenia was an estimated $281.6 billion in 2020. For a person diagnosed with schizophrenia at age 25, the approximate total lifetime cost to the economy is $3.8 million or $92,000 per year.
To put those numbers in context, the total costs for those living with schizophrenia in Delaware would be almost $850 million. Sadly, all too often, that money is spent on the consequences of a failed approach when it comes to supporting people living with schizophrenia.
For example, each year, our nation spends $14.5 billion on costs associated with incarcerating people living with schizophrenia and billions more on other justice system interactions and homelessness. In Delaware, the cost of incarceration for individuals with schizophrenia estimated from these same reports is almost $45 million in 2020 alone.
For many families with a loved one living with schizophrenia, the complexities of providing support in this system fall heavily on their shoulders, resulting in more than $104 billion in caregiver-related costs in the U.S. Just think of the pressure these caretakers live with every day, knowing that they may be the only thing keeping their loved one out of jail or a shelter.
No other disease is treated this way. Treatment is one-sixth the cost of incarceration, and yet for decades, we have failed to ensure that people living with schizophrenia receive the quality medical care they need and deserve.
Our current approach is, by default, resulting in criminalizing a medical illness, rather than investing in a system to actually provide appropriate medical care with supportive social services and housing that heals.
It is well past time to change this. No cure for schizophrenia is available. However, with early diagnosis and lifelong effective treatment and care, individuals living with schizophrenia have unlimited potential.
Rather than continuing to fund a system that is failing individuals with schizophrenia, we need to invest in a new and better treatment paradigm. It is time for a national initiative to understand all the impacts of the disease, how it is currently managed, the costs and the failures. From there, we must develop and execute targeted, cost-effective lifesaving care.
We know that only with more comprehensive, accurate data and analysis can the U.S. develop targeted policies and, ultimately, a better system of care for people living with schizophrenia. Only then can we begin to change the treatment paradigm.
That’s why S&PAA has launched the Insight Initiative to be a sponsor for further data collection regarding the total impact of schizophrenia and psychosis and act as a catalyst for change.
We are calling on members of Congress to direct the National Institute of Mental Health (NIMH) to collect accurate prevalence and incidence data by conducting a systemwide epidemiologic study on schizophrenia and serious mental illness.
Furthermore, we are asking Congress to increase the annual clinical research budget for NIMH to expand evidence-based studies with the best potential to improve outcomes for individuals diagnosed with schizophrenia.
And we urge Congress to reauthorize the 21st Century Cures Act to include funding for priorities that serve individuals living with schizophrenia.
On behalf of everyone living with and caring for individuals with schizophrenia — in Delaware and throughout the United States — we urge Sens. Tom Carper and Chris Coons and Congresswoman Lisa Blunt Rochester, all D-Del., to support the Insight Initiative.
We can do better, both in terms of the care provided, the money spent and the compassion extended to people living with schizophrenia. The time for action — for real change — is now.
Gordon Lavigne is CEO of the Schizophrenia & Psychosis Action Alliance, a nonprofit organization whose mission is to save lives by changing the treatment paradigm for all people affected by schizophrenia-related brain diseases that involve psychosis.