Our approach to schizophrenia is failing

Right now, around 2.65 million people are living with schizophrenia in the U.S. Unfortunately, too many are relegated to substandard medical care, incarceration, and homelessness. Don’t they deserve appropriate medical care for a treatable disease?

That’s why we are calling on Congress to reauthorize the 21st Century Cures Act to include funding for priorities that serve individuals living with schizophrenia.

A newly released analysis by the Schizophrenia & Psychosis Action Alliance (S&PAA) on the costs of schizophrenia, both economic and in human lives, makes it clear that our current approach to this disease has failed. The U.S. spends $282 billion annually on a failing system. For each person diagnosed with schizophrenia at age 25, the total lifetime cost for one person is around $3.8 million or $92,000 per year.

To put those numbers in context, the current cost to society of caring for those living with schizophrenia is equivalent to the combined annual state budgets of Arizona, Colorado, Florida, Indiana, Massachusetts, Minnesota and South Carolina.

This is both an economic and moral outrage. It is way past time to change the treatment paradigm for schizophrenia. 

Let us be clear: when it is said that these costs are associated with the care for people with schizophrenia, the “care” provided is a sad reflection of the failures of our mental health and social service systems to support those with schizophrenia.

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. Quite simply, we are criminalizing a medical illness. No other disease is treated this way, nor would we tolerate it if it was. 

Medical treatment is one-sixth the cost of incarceration. And yet for decades, we have failed to ensure that people living with schizophrenia — a neurodevelopmental brain disease with a biological and genetic basis, not unlike autism or Alzheimer’s disease — receive the quality medical care they need and deserve.

Rather than continuing to fund our failures, we need to invest in a new and better treatment paradigm, one that recognizes the disease as a neurological condition and addresses it accordingly. Instead of “flying blind” and basing policies and treatment decisions on incomplete data, we need to concentrate on understanding all the impacts of the disease, how it is currently managed, the costs, and the failures. Only then can we develop and execute targeted, cost-effective, life-saving care.

There are a number of steps policymakers can take right now to initiate this long-overdue shift. As a first step, members of Congress should direct the National Institute of Mental Health (NIMH) to collect accurate prevalence and incidence data by conducting a system-wide epidemiologic study on schizophrenia and serious mental illness.

Furthermore, as part of the budget reconciliation process, Congress should increase the annual clinical research budget for the National Institute of Mental Health (NIMH) to expand evidence-based studies with the best potential to improve outcomes for individuals diagnosed with schizophrenia.

Policymakers should also eliminate the Medicaid Institutionalization of Mental Diseases (IMD) exclusion in order to increase available psychiatric treatment beds.

States have an important role to play as well. They need to reform laws regarding how individuals access care, including greater utilization of assisted outpatient treatment and improvements to how the criminal justice system responds, while also taking steps to get more providers in the field to support individuals with schizophrenia.

The time has come to demand something better — a system that is grounded in science and designed to improve the lives of people living with schizophrenia. Surely, that is something we can all get behind.

Eddie Bernice Johnson is a member of Congress representing the 30th District of Texas and Tim Murphy, Ph.D., is a psychologist and former member of Congress from Western Pennsylvania. They were the authors of the Helping Families in Mental Health Crisis Act of 2016, which overwhelmingly passed the House of Representatives and was later amended into the 21st Century Cures Act. Before being elected to Congress, Johnson was the first female African American Chief Psychiatric Nurse at the V.A. Hospital in Dallas. Murphy is a practicing psychologist and served as the principal investigator for the S&PAA study.