Please read the latest report on Reimage Schizophrenia: transforming how we are treated function and thrive.

Published from the Schizophrenia & Psychosis Alliance, the summary of findings published Feb 2023.

BREAKING! Click here to read our new Voice of the Patient Report (https://sczaction.org/insight-initiative/pfdd/), which captures the powerful stories of people living with schizophrenia and those who care for them. The report summarizes the compelling testimony provided during our Externally-Led Patient-Focused Drug Development meeting on Nov. 2, and was submitted today to the U.S. Food and Drug Administration.

The meeting gave our community a voice – and it was heard. FDA’s Dr. Bernard Fischer told us during the meeting that “the FDA recognizes that there is more work to be done to get better treatments for schizophrenia.”

We thank our meeting co-hosts, who joined us to provide a united front in the fight for treatment equity for people living with schizophrenia: American Foundation for Suicide Prevention, Mental Health America, National Council for Mental Wellbeing and NAMI. And we are indebted to the people living with schizophrenia and their caregivers who participated in this effort and made their voices heard.

People with schizophrenia have the right to effective medicines – just like anyone else with a serious disease. We are working every day to make that happen.

Executive summary

Schizophrenia is a serious, disabling brain disease. While medical treatment for schizophrenia has existed for many years, these treatments are often ineffective and can cause debilitating side effects. The result: countless people with this severe brain disease are subjected to a trial-and-error approach, switching from one medicine to another in hopes of finding something that will curb what can be disabling and life-disrupting symptoms.

Many people with schizophrenia have yet to find a medicine that works for them — creating an entire population of people who cannot
work or live independently and can suffer devastating symptoms of psychosis that can lead to incarceration or homelessness. Just as with
heart disease, diabetes or any other serious illness, if schizophrenia isn’t treated properly, it can get progressively worse. With the goal of turning the tide and improving drug-treatment options for schizophrenia, people with the brain disease and their caregivers gathered virtually on November 2, 2022, to describe what it’s like to live with this serious disease and share their experiences with available drug treatments.
Participants not only pressed drug developers to intensify efforts to develop more effective drug treatments with fewer side effects— they also urged the U.S. Food and Drug Administration (FDA) to allow broader access to the “last resort” drug clozapine, which many patients credited with restoring their ability to attend school, work and live healthy and productive lives.

The meeting, “Reimagine Schizophrenia: Transforming How We Are Treated, Function and Thrive,” was co-hosted by the Schizophrenia & Psychosis Action Alliance, the American Foundation for Suicide Prevention, Mental Health America, the National Alliance on Mental Illness and the National Council for Mental Wellbeing as part of the FDA’s Externally-Led Patient-Focused Drug Development (PFDD) initiative. The FDA launched this initiative in 2012 to collect information about patient and caregiver perspectives on drug development — in particular, what people living with a disease consider to be meaningful treatment benefits and how they want to be involved in the drug development process.

Many people with schizophrenia have yet to find a medicine that works for them — creating an entire population of people who cannot work or live independently and can suffer devastating symptoms of psychosis.