Today we are proud to release our Voice of the Patient Report, 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 stories people shared at the meeting were profoundly moving. It was heartbreaking to hear about serious side effects and other difficulties with many current treatments, but heartening to hear the stories of those who have found treatments that work for them – and who are reclaiming their lives as students, parents and professionals.
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 are indebted to the people with schizophrenia and their caregivers who participated in this effort. We also deeply appreciate the FDA’s partnership, as the EL-PFDD initiative provides a valuable forum for the most important voice in the treatment discussion: The patient.
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:
The American Foundation for Suicide Prevention
Mental Health America
The National Council for Mental Wellbeing
The National Alliance on Mental Illness
Thanks also goes to our meeting sponsors, whose funding provided webcasting and consulting services for the meeting:
Platinum sponsors: Boehringer Ingelheim, Karuna Therapeutics and Sunovion Pharmaceuticals
Gold sponsors: Cerevel Therapeutics and Janssen Neuroscience
Silver sponsors: Acadia Pharmaceuticals, Neurocrine Biosciences, Otsuka and Teva
Bronze sponsors: BioXcel Therapeutics and Lundbeck
People with schizophrenia have the right to effective medicines – just like anyone else with a serious disease. They deserve respect and recognition that they are people who want to live and thrive. We are working every day to make that happen.
About schizophrenia
Schizophrenia is a spectrum of serious neuro-psychiatric disorders in which people experience periods during which they interpret reality differently. Symptoms of schizophrenia may include a combination of visual and auditory hallucinations, false beliefs, cognitive impairments, and lack of awareness about how their thinking and behaviors may impair their daily life.
Schizophrenia is thought to be a progressive neurodevelopmental disorder, with the earliest signs most often appearing during adolescence, and sometimes in childhood. It often is not identified until young adulthood.
Approximately half of those with schizophrenia achieve recovery, living and working in the community; 25% of people need ongoing support; and approximately 15% do not see improvement. People with schizophrenia often experience co-occurring negative health outcomes, leading to a life expectancy shortened by an average of 28.5 years.
Schizophrenia costs the U.S. an estimated $281.6 billion in 2020, with a significant amount of direct costs due to health care, incarceration, supportive housing and homelessness. For each person diagnosed with schizophrenia at age 25, the total lifetime cost to the economy is approximately $3.8 million or $92,000 per year.
