About “Reimagine Schizophrenia: Transforming How We Are Treated, Function and Thrive”

As part of the US Food and Drug Administration’s Externally-led Patient-Focused Drug Development (EL-PFDD) initiative, the Schizophrenia & Psychosis Action Alliance (S&PAA), with partners the American Foundation for Suicide Prevention, Mental Health America, the National Alliance on Mental Illness and the National Council for Mental Wellbeing, convened people living with schizophrenia, their care partners and families to discuss what it’s like to live with the symptoms and their effects.

The initiative was set up to recognize patient and caregiver perspectives and begin shifting the paradigm for how schizophrenia is treated by our health system and society. “We must ensure that schizophrenia treatments address what people living with the disease consider to be meaningful treatment benefits,” said S&PAA CEO Gordon Lavigne. “Understanding the challenges of living with this severe brain disease can lead to valuable insights that improve the drug-development process.”

During the meeting, people living with schizophrenia and their families revealed how their daily lives are impacted by ongoing challenges and unmet treatment needs.

“On his best days, my son is very high functioning…On his worst days, he’s very withdrawn, has challenges with his cognitive functioning, comfort being around others and going about his daily life.” – Parent of a man with schizophrenia
“I need more time to think on tests, so I have extended testing times [in graduate school]. And in daily life, I always forget where my phone is.” – Woman living with schizoaffective disorder

Key findings

The impact of schizophrenia is often devastating and chronically disabling. Negative symptoms have a significant negative impact on QoL, cognitive dysfunction causes major disruption at work or school and positive symptoms can lead to violent urges.

“Some days I’m a high-functioning multitasker who can operate on multiple levels...then three days later, I have mush brain and cannot express or explain a thing and cannot remember anything.”

Multiple barriers stand in the way of successful treatment. Use of current treatments can be blocked or made difficult by anosognosia, the impact of side effects, and access issues.

“Anosognosia has had the biggest impact on my son’s [illness]. He has no insight into his fixed delusions.”

There is an urgent need for more effective treatments with fewer side effects. Treatments must not only control hallucinations and delusions but must also address negative symptoms and cognitive impairment.

“We who live with schizophrenia deserve to live a healthy existence with medications that do not give us side effects.”

People with schizophrenia are not treated with urgency or understanding. There is a need to minimize treatment delays and cognitive damage, as well as a need for more knowledge and less stigma among healthcare providers, law enforcement and the public.

“It took 11 months for him to even get a full psych eval.”

A call to action: People with schizophrenia have the right to effective medicines

Patients with schizophrenia have several unmet treatment needs.

More personalized treatment
Better treatments for disabling symptoms
Treatments without significant side effects

Discussions with the group highlighted clear gaps in the current care pathways for schizophrenia that need to be addressed to optimize care.

“[My son] had to suffer for over a year taking a myriad of medications that just weren’t working very well for him.”

Further details and the full report can be found here:

https://sczaction.org/insight-initiative/pfdd/

Source: Schizophrenia and Psychosis Action Alliance. Reimagine Schizophrenia: Transforming How We Are Treated, Function and Thrive Final Report. Available at: https://sczaction.org/wp-content/uploads/2023/02/Reimagine-Schizophrenia-VOP-report-FINAL-1.pdf. Last accessed September 13, 2023.

QoL, quality of life; REMS, Risk Evaluation and Mitigation Strategy.

Cite this article as: Shifting the schizophrenia paradigm. Connecting Psychiatry. Published January 2024. Accessed [month day, year]. [URL]

SC-US-76199

SC-CRP-14897

December 2023