There is an urgent need to bridge the gap between accepted scientific fact and current systems of care for people living with schizophrenia spectrum disorders.
We simply do not know what we need to know about this patient population. If we turn to public mental health agencies who provide the vast majority of publicly-financed inpatient hospital and community-based services for people living with schizophrenia, the lack of basic data is striking.
This lack of information often extends to the realm of providing service. State mental health agencies struggle to identify specific types of care needed, the penetration rate for mental health and related support services in a given geographic area, the intensity of service delivery for each patient with schizophrenia, and—most importantly—verifiable clinical outcomes.
The disconnect between established scientific knowledge about schizophrenia and the inadequacies in the systems of care for the illness must be bridged. These gaps in data and knowledge have major implications for the access and quality of care, leading to distorted public policy decisions and confusion for patients.
Schizophrenia is a severe and disabling brain disorder characterized by disruptions in thought processes, perceptions, emotional responsiveness, and social interactions. Schizophrenia often displays psychotic symptoms such as hallucinations, delusions, thought disorder (unusual ways of thinking), reduced expression of emotions, reduced motivation to accomplish goals, difficulty in social relationships, motor impairment, and cognitive impairment. While typically diagnosed in a person’s late teens or twenties, early symptoms often develop in childhood.
Exactly how many people in the United States are living with schizophrenia is unknown. Estimates of the condition’s annual prevalence in the United States range from 0.24% to 1.0% of the population. However, these figures are likely an underestimate as studies only included individuals living in independent households, missing the largest portions of the population that are homeless, incarcerated, in long-term care facilities, or living in group home settings.
The cost of schizophrenia is large across multiple cost categories. One study estimated the total annual excess societal burden of schizophrenia in the US at $155.7 billion in 2013 alone, with the largest costs attributable to unemployment, caregiver productivity loss, and direct healthcare costs. The same study also estimated costs related to law enforcement (including incarceration, judicial services, legal services, and police protection) at around $7.16 billion per year, and the costs related to homeless shelters was $1.9 billion per year. However, the study was not able to capture the costs of undiagnosed patients, uninsured patients, or those covered by military insurance. Additionally, this study did not include many other costs relevant in this population across all domains.
The costs of healthcare for individuals with schizophrenia has been reported in several older studies. Using commercial, Medicaid, and Medicare insurance claims, one study estimated that for one year, healthcare costs were up to $34,204 per patient and psychiatric healthcare costs were at $12,722 per patient. In this study, the average age of patients was 49 years old and over 64% of patients were on Medicaid insurance programs.
Across multiple studies, inpatient costs and prescription drug costs comprised the largest share of direct healthcare costs. Further, one study found that better adherence could yield annual net savings of $3.3 billion for the Medicaid program.
Evidence of costs and expenditures associated with schizophrenia outside the healthcare system is limited and often restricted to data at the state or county level. In a population of individuals treated for schizophrenia, one study found that 46% of participants reported at least one interaction with the criminal justice system each year, with 67% of them reported being a victim of crime. On average, the annual per-participant cost of criminal justice system involvement (not including incarceration) was $2,124. In terms of incarceration, data from the US Bureau of Justice suggests between 15-25% of inmates have symptoms of a psychotic disorder.
Little research has been conducted on the costs of homelessness, but one large meta-analysis found the prevalence of schizophrenia and related disorders in the American homeless population ranges from 8% to 18%. A longitudinal study of chronically homeless individuals in Philadelphia found that the average chronically homeless person incurred $2,933 per year in homeless remediation costs including shelter stays, street outreach, and visits to crisis response centers.
Finally, surveys of caregivers and their experiences suggest the burden of caregiving is substantial. The evidence suggests caregivers spend the equivalent of a part or full-time job providing direct care, incur higher healthcare costs than non-caregivers, and spend approximately $400 per month out-of-pocket on caregiving-related expenses.
As evidenced by these substantial institutional and personal costs of schizophrenia, there are serious unmet needs for this population. Legislation such as the Mental Health Parity and Addiction Equity Act of 2008 as well as the Patient Protection and Affordable Care Act have sought to improve access and outcomes by making parity in coverage of medical, surgical, and mental healthcare. However, issues with treatment limitations and stringent prior authorization practices have created barriers to receiving care.
Among schizophrenia patients specifically, research and treatment in recent years has focused on early diagnosis, improving antipsychotic adherence, and providing community-based care rather than inpatient-based care. Long-acting injectables are a treatment option that markedly improve adherence compared to oral antipsychotics. This treatment innovation also allows providers to more easily identify when a patient becomes non-adherent so they can intervene accordingly. Further, interventions such as California’s full-service partnerships (FSPs) provide subsidized housing and wraparound services focused on rehabilitation and recovery. FSPs have shown promising clinical and economic outcomes, with one study finding that enrollment in a FSP program reduced time spent homeless, improved quality of life, and offset 82% of the program costs by reducing the use of inpatient and emergency services.
Previous studies of the economic burden of schizophrenia—many of which were discussed above—have taken various research approaches. Some utilized commercial, Medicare, or Medicaid claims to quantify direct healthcare costs. Some used national survey data to measure direct and indirect costs. Others analyzed data from small studies or state or county mental health data. The results of these studies depend on a myriad of factors, including the cost perspective, method of patient cohort selection, types of cost quantified, presentation of results, and duration of the study.
The limitations of previous cost and economic burden estimates generally reflect a singular theme: The individuals with the highest level of need—like those that are institutionalized or homeless— may not be captured. In studies using claims data, the uninsured or those who are only insured for a short period of time are not counted. In studies using national survey data, only costs reported by non-institutionalized patients are reported. Many studies base their cost estimates on previously reported prevalence or cost data that may not reflect current values. Further, the studies with the most granular data like healthcare costs for incarcerated individuals are generally based on small groups of patients in a single state or county, and the results may not be nationally representative.
The aim of Schizophrenia & Psychosis Action Alliance is to launch a comprehensive, data-driven analysis that provides a statistical resource for pertinent disease impact statistics which will highlight prevalence, mortality, morbidity, caregiving, and the costs of healthcare as well as services including homelessness and the criminal justice system.
We believe gathering comprehensive data will be a catalyst for reclassifying schizophrenia as a neurological disease and increasing funding for research and appropriate treatment.
To gather this data, we have launched a phased approach beginning with overall assessment of existing data and identification in gaps which prevent data collection.
Information on this website is not intended to be used for medical diagnosis or treatment.
We are a 501 (c)(3) tax-exempt non-profit organization (Tax ID 33-1213657)
We need your support for the Cost of Mental Illness Act. This bill would provide the accurate and comprehensive data needed to create policies that ease the burden of schizophrenia and other serious mental illness while improving lives. Show your support and encourage your United States Representative to vote for this bill.