People with the severe brain disease, care partners & healthcare providers collaborate to create new “Roadmap to Recovery”
Washington, D.C., May 15, 2024 – More than 125 people with schizophrenia, their families/care partners and other schizophrenia stakeholders are convening here today to discuss the most glaring gaps in care for this severe brain disease and begin to map a new treatment journey that supports recovery.
The inaugural SPRING Summit is part of the multi-year Schizophrenia Policy and Research Institute NextGen (SPRING) initiative, created and led by the Schizophrenia & Psychosis Action Alliance. SPRING is harnessing the power of the schizophrenia community to improve diagnosis, accelerate new treatments and improve access to care for the millions of people with the disease.
“The extensive barriers to proper diagnosis, treatment and support are deeply embedded in our healthcare system, our policies and unfortunately, in our culture,” said Arundati (Arun) Nagendra, Ph.D., S&PAA’s Director of Research and Scientific Affairs. “We are working together as a community – putting those with lived experience front and center – to help ensure we are identifying the right solutions that will achieve meaningful change.” Schizophrenia is a spectrum of serious neuro-psychiatric brain diseases in which people interpret reality abnormally. Schizophrenia may result in some combination of hallucinations, delusions and extremely disordered thinking and behavior that impairs daily life. Schizophrenia and related psychosis disorders affect at least 1 in 100 people in the United States – or about 2 million adults.1,2,3
With proper treatment and support, many people with schizophrenia can achieve recovery. But this requires care that our siloed healthcare system does not often provide, and equitable access to services that many public policies do not support.
People with schizophrenia often receive care only when they reach a crisis point, which may involve traumatic interactions with law enforcement or involuntary psychiatric hospitalizations. Less than half of those with schizophrenia are receiving any sort of treatment and only 5% are receiving the comprehensive services necessary for optimal long-term outcomes.
SPRING is a collaboration of people with lived experience, treatment providers, researchers, community leaders and policymakers – all of whom share a mission to ensure people living with schizophrenia have access to proper treatment and are given the chance to recover and thrive.
“The voices of our community have always informed every aspect of our work,” said S&PAA CEO Gordon Lavigne. “The SPRING initiative is the next generation of that approach, and we’re energized to work side by side to drive solutions with those who know schizophrenia firsthand.”
Outcomes from today’s SPRING Summit will include public recommendations for those with lived experience and treatment providers; an event proceedings paper for submission to a scientific journal; and a draft framework for Center of Excellence evaluation standards.
1 Moreno-Kustner B et. al. Prevalence of psychotic disorders and its association with methodological issues. A systematic review and meta-analyses. PLoS One. 2018;13(4):e0195687.
2 Bourdon KH et. al. Estimating the prevalence of mental disorders in U.S. adults from the Epidemiologic Catchment Area Survey. Public Health Rep. 1992;107(6):663-668.
3 Regier DA et. al. The de facto US mental and addictive disorders service system. Epidemiologic catchment area prospective 1-year prevalence rates of disorders and services. Arch Gen Psychiatry. 1993 Feb;50(2):85-94
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About the Schizophrenia & Psychosis Action Alliance
The Schizophrenia & Psychosis Action Alliance works to shatter the barriers to treatment, survival and recovery for people living with schizophrenia. Every day without treatment can mean the difference between life and death. Our mission is to advance systemic change and promote recovery through Research, Education & Care and Advocacy & Public Policy.
We envision a day when the understanding of schizophrenia as a brain disease allows every person living with it to be treated with respect, access appropriate treatment and have the opportunity to live a meaningful, satisfying life. To learn more, please visit www.sczaction.org.
