Dismantling Barriers to Schizophrenia Treatment & Support
Schizophrenia is a spectrum of serious neuro-psychiatric brain diseases in which people misinterpret reality. Schizophrenia may result in some combination of hallucinations, delusions, and disordered thinking and behavior that impairs daily life.
Schizophrenia and related psychosis disorders affect at least 1 in 100 people in the U.S. – about 2 million adults. However, the prevalence of schizophrenia may be dramatically underreported because people with schizophrenia often reside in locations that are hard for surveyors to access, including homeless shelters, county jails, state prisons, and nursing facilities. About half of those with schizophrenia have co-occurring mental or behavioral health disorders.
As the nation’s leading non-profit organization dedicated to solving the foundational problems that create barriers to treatment for people living with schizophrenia, the Schizophrenia & Psychosis Action Alliance (S&PAA) firmly believes that people living with schizophrenia deserve effective treatment, access to comprehensive care, and to be treated with respect and urgency.
Arundati Nagendra
“Schizophrenia is a comprehensive disease that affects every part of your life and the lives of those who love you,” said Arundati (Arun) Nagendra, PhD, S&PAA’s Director of Research and Scientific Affairs. “It takes a huge emotional and social toll. People with schizophrenia often report feeling incredibly lonely and isolated. Many of them want to connect with and contribute to the world around them, but do not have the support to do so.”
“Caregivers of those with schizophrenia face more than just the normal stress of taking care of a loved one with an illness,” Dr. Nagendra continued. “They suffer from the agony of living through the realities of a psychosis spectrum disorder, with all the attached discrimination and stigma. In fact, there is a clinical phrase that captures this called ‘ambiguous loss,’ which refers to a lack of resolution, making it difficult for caregivers to process their grief and move forward.”
Integrated Care and Early Treatment are Key to Recovery
People with schizophrenia typically require lifelong treatment. Early treatment may help improve long-term prognosis and get symptoms under control before serious complications develop. Lack of treatment leads to severe negative health outcomes, including a life expectancy shortened by an average of 15 years.
“Recovery is the goal of schizophrenia treatment, and although there is no cure for the disease, many people do well and have minimal symptoms. Some people can recover entirely,” Dr. Nagendra said. “However, there are significant barriers to treatment. One of the biggest is a lack of integrated care.”
Unfortunately, treatment for schizophrenia in the U.S. is often ad hoc and fragmented, extensively delayed, and frequently disrupted. Pathways to care are complex, involving multiple points of contact before a diagnosis is made and treatment begins. As a result, only about 5% of people with schizophrenia receive the needed array of evidence-based care.
An integrated care system should include a psychiatrist who can prescribe personalized medicine, individual therapist, family therapist, education and employment specialist, peer support specialist, and case worker. All of these providers should specialize in treating people with schizophrenia, Dr. Nagendra said. However, there is a critical shortage of health care providers who are specially trained in the disease. Social support agencies, homeless shelters, and the legal system should also be integrated into the care team, but these systems often operate in silos and apart from health care providers, which interferes with continuity of care and causes worsening symptoms and relapses.
According to Dr. Nagendra, the ideal treatment journey starts with proactive symptom screening. She explained that up to five years can elapse (a period called the “prodromal” phase) between the onset of warning signs such as social withdrawal and odd beliefs to full-blown psychotic episodes.
“Duration of untreated psychosis is a big predictor of outcomes,” she said. “When diagnosis is delayed significantly, it becomes even harder to experience the benefits of treatment.”
The reasons for not seeking a schizophrenia diagnosis and follow-up treatment are many, Dr. Nagendra said and include fear and stigma about this misunderstood illness. Another common reason people with schizophrenia may be reluctant to access care is that many are unable to understand that they have the disease. This impaired illness awareness, which is not adequately addressed by our current system of care, is a key reason that 50% of those with schizophrenia do not take their prescribed medications as directed.
S&PAA’s Solution-Focused Programs
S&PAA sees itself as a catalyst whose mission is to advance systemic change and promote recovery for the schizophrenia community through three strategic focus areas:
- Research: By defining and leveraging the findings on the foundational elements that would improve the broken health care system, S&PAA aims to accelerate earlier diagnosis, improve evidence-based treatment, and address unmet and under-resourced needs for those affected by schizophrenia.
- Education and Care: By providing knowledge, a safe space to gain understanding, and a community to offer support, S&PAA aims to establish trusted relationships, reduce isolation, build and expand a base of knowledge, and be a trusted source to rely on throughout the recovery journey.
- Advocacy and Public Policy: By amplifying the voices of the schizophrenia community in policy creation and treatment development, S&PAA aims to drive needed health care system changes and ensure equitable access to recovery-focused treatment and care.
“Schizophrenia and psychosis are much more prevalent than many people know,” said Gordon Lavigne, S&PAA’s CEO. “We want to ensure that every individual has access to effective treatment, compassionate care, and a community of understanding. Through research, education and direct action, we aim to break down the stigma surrounding schizophrenia and psychosis and empower patients to lead fulfilling, productive lives.”
Practical, Actionable Guidance to Support Those Living with Schizophrenia
Nicole Gillen is S&PAA’s Director of Community Engagement. As a caregiver of someone living with schizophrenia, she brings unique insights to her role and is building out the organization’s Education and Care programs.
Nicole Gillen
“We see a huge need for practical, actionable information to guide patients and caregivers as they deal with the complexities of schizophrenia,” she said. “Many of the tasks that would ideally be handled by our health care system are shifted to those living with the disease and their families, which is incredibly challenging for this very vulnerable population. Many people get left behind.”
Gillen listed some of the many challenges facing those living with schizophrenia, from general stigma and discrimination to difficulties obtaining housing and optimal treatment, possible interactions with police and/or the legal system, or even involuntary hospitalization. Gillen’s goal is to make S&PAA the main source of the most timely and relevant information to help people manage these issues, whether their needs are immediate or longer-term.
“Schizophrenia can be chaotic and volatile, and people need nuanced support,” she said. “Every state, municipality, and health system handle things differently, which makes it incredibly difficult to build a singular program of support.”
To meet the needs of people with schizophrenia-related illnesses and their families, S&PAA offers a free information resource line with trained team members who can provide personalized information and resources via email, phone, or text. Gillen stressed that if someone or their loved one has thoughts of self-harm, they should go to an emergency room or dial the National Suicide and Crisis Lifeline at 988.
S&PAA also offers support groups designed to be safe spaces for those who are marginalized and isolated, to help them connect with other people who understand the world of living with schizophrenia. Thousands of people participate in these weekly support groups. (For more information on support groups and to register, click here.) Other support resources include an online support community, Facebook group and caregiver support groups.
“Caregivers shoulder a tremendous burden and are often seen as an obstacle instead of the true reporter of what’s happening,” Gillen said, noting that caregivers spend almost $2,000 a month on everyday needs to support their loved ones with schizophrenia. “They often have to fight with insurance companies and hospitals to get better treatment, with social security to obtain disability, and with pharmacies to obtain medications. They are a quiet troop of warriors who lose their jobs, their relationships, and themselves to do anything they can for their loved one.”
Additional Resources from S&PAA
S&PAA offers a wealth of additional resources to help people learn more about schizophrenia, discover why early intervention is crucial to improved outcomes, and explore treatment information and medication options. Additional resources include:
- A series of toolkits for those newly diagnosed with schizophrenia.
- A caregiver toolkit and seminar series to support caregivers on their journey.
- A free, on-demand program for clinicians focused on tailored treatment plans.
- Information on clinical trials.
- Research on the cost of schizophrenia to caregivers and society.
- Events and webinars featuring clinicians, caregivers, and people living with schizophrenia.
“Getting a footing in life is nearly impossible when you’re living with schizophrenia,” Gillen said. “That’s why S&PAA is committed to developing resources that will help people and their caregivers create a plan for today and the future.”
Editor’s Note: Are you or someone you love on Medicare and being treated for schizophrenia? The HealthWell Foundation offers up to $4,000 in insurance premium and medication copay assistance for eligible patients struggling with treatment costs through its Schizophrenia – Medicare Access Fund.
***If you or someone you know needs immediate help, please call 988 or visit https://988lifeline.org for the Suicide and Crisis Lifeline.***
