Delusions, hallucinations and disorganized thinking are symptoms that contribute to the stigma and discrimination that those diagnosed with schizophrenia face every day. And yet, these symptoms are described as “positive”, which on its face makes no sense.
The term actually has a mathematical source: positive symptoms are ADDED to what the general public experiences. Whatever their name, they can significantly affect a person’s ability to manage day-to-day life and are a main target of schizophrenia treatment.
Join us for a 360-degree perspective on the roles people living with the disease, caregivers and clinicians can play in managing these symptoms on the pathway to recovery.
Rob Ramos
Living with schizophrenia
Jody Geisel
Caregiver
David Weiss, Ph.D.
Clinician
S&PAA’s inaugural Schizophrenia Policy and Research Institute NextGen (SPRING) Summit in Washington, D.C., was a unique and groundbreaking collaboration of 125 people who represented the diverse range of stakeholders in the schizophrenia journey: those diagnosed with the disease, care partners, judges, law enforcement, researchers, community leaders and policymakers. Summit participants pinpointed the biggest barriers to schizophrenia treatment and recovery, then worked to identify solutions, launching a Roadmap to Recovery that will guide our collaborative efforts moving forward. True to the S&PAA mission, the voices of those impacted by the disease drove the discussions and helped guide the outcomes.
On World Schizophrenia Awareness Day, we launched a Day of Action to draw urgent public attention to the discrimination against people living with schizophrenia that is so embedded in our health systems and society. We hosted three major events to shine a light on these realities and help end this inequity:
Hill Day
Fly-In
We connected 30 people from our community with 31 members of Congress to advocate that funding be increased for programs to help people with schizophrenia survive and thrive.
Capitol Hill
Briefing
Capitol Hill staff joined families from our community at a briefing as we called for improving access to treatment.
Policy
Webinar
Nearly 300 people attended our Alliance for Health Policy webinar, during which experts discussed the severe gaps in care (e.g., medication management) and how to solve them.
People living with schizophrenia and other psychosis spectrum disorders are too often misunderstood or ignored, and current treatments are outdated and can cause significant side effects. On November 2, 2022, the schizophrenia community finally had the spotlight, as those living with the condition and their family members shared their treatment needs and concerns with drug developers and FDA staff.
The Externally-Led Patient Focused Drug Development (PFDD) meeting – “Reimagine Schizophrenia: Transforming How We Are Treated, Function and Thrive” – offered the chance to make what matters to those living with the neurobiological brain disease a higher priority in drug development and the FDA review process.
The meeting 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.
On World Schizophrenia Awareness Day – May 24 – we need your voice to draw urgent public attention to the discrimination against people living with schizophrenia that is so embedded in our health systems and society. S&PAA has organized a Day of Action to shine a light on these realities and help end this inequity.
We hope you’ll join us on May 24 and make World Schizophrenia Awareness Day count by taking action. See below to learn more and sign up for our Day of Action events.
Until we break down the systemic barriers to treatment and care for people with schizophrenia, we cannot achieve equality in how we are treated – by our governments, by healthcare providers, by the criminal justice system and by society.
virtual
Global
webinar
Hear a panel of experts discuss the systemic gaps in care for people with schizophrenia and actions needed to bridge those gaps.
Keep up with news, events and ways to support us.
Support the change needed for people living with schizophrenia.
Sponsorship of these events provided by the companies below. The sponsoring companies have no control over the event designs or content.
Questions?
If you or a loved one has thoughts of self-harm, go to a hospital emergency room or dial the National Suicide and Crisis Lifeline at 988.
Keep up with the latest news, events and ways to support us.
Information on this website is not intended to be used for medical diagnosis or treatment.
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in-person
This is an exclusive opportunity to visit the U.S. Capitol and meet with Congressional members and legislative staff. It is an important chance for our community to engage directly with policymakers to share your experiences and drive conversations that will improve the lives of people with schizophrenia.
Our sign-up list is full! Thank you for your support.
in-person
We will co-host this in-person lunch briefing on Capitol Hill with the American Association of Psychiatric Pharmacists. This event is for members of Congress and their staff, and will focus on the dangerous treatment barriers for people with schizophrenia.
The U.S. Food and Drug Administration issued a Risk Evaluation and Mitigation Strategies (REMS) program for clozapine in 2019. This program created severe restrictions on pharmacies and healthcare providers and resulted in grave danger to people with schizophrenia who rely on clozapine to manage their brain disease. It has led to patients losing access to the medication and suffering from severe psychosis – leading to hospitalization and worsened illness, loss of jobs and housing and in at least one case, death.
We are aligned with other leading stakeholder organizations, as well as with people living with schizophrenia and their families, to raise awareness of the consequences of the REMS and advocate for its modification or removal.
virtual
This virtual webinar, hosted by the Alliance for Health Policy in partnership with S&PAA, will showcase the severe, systemic gaps in care, the resulting cost to individuals, families and society and the actions required to bridge those gaps. The event is targeted to government leaders, healthcare experts and housing and criminal justice audiences, but is open to all who are interested.
Click here to register.
Hear the stories of hope, love and challenges shared by caregivers in our community as part of National Family Caregivers Month.
