Caring for people with schizophrenia can be improved by strengthening the workforce, discovering new biomarkers, and increasing awareness, said experts and advocates during an online briefing this week hosted by the Alliance for Health Policy in partnership with the Schizophrenia and Psychosis Action Alliance.
A ‘No-Fault Brain Illness’
Paul “Paulie VanEdWærd” Benjamin, who uses they/them pronouns, first started noticing changes in their behavior when they went away to college in Michigan in the 1990s. Benjamin was socializing more, drinking, and their grades started to slip. Benjamin remembers feeling anxious and depressed, and then began to experience hallucinations — loud, unexplained whispers and strangers winking at them.
Schizophrenia, a “treatable no-fault brain illness,” impacts about one in every 100 people worldwide, said Arundati “Arun” Nagendra, PhD, director of research and scientific affairs at the Schizophrenia and Psychosis Action Alliance. One hallmark of the disease is psychosis, which takes the form of hallucinations, delusions, and disorganized thoughts and behaviors, and often “reflects themes of feeling unsafe, unloved, and inadequate.”
While schizophrenia has been historically blamed on the individual, parents, or other caregivers, that theory has largely been set aside due to the “overwhelming evidence that schizophrenia is a brain disease,” said Russell Margolis, MD, of Johns Hopkins University School of Medicine in Baltimore.
Advanced genetic techniques have identified certain, “very rare” genes that seem to greatly increase the chance that a person will develop schizophrenia, as well as other genetic factors that only “contribute very slightly” to the risk of the disease, he noted. “So, somebody with schizophrenia typically has some combination of minor genetic variants that add up, or rare variants, but again, providing compelling evidence for the fact that this is a brain disease.”
Obstacles to Care
“The gold standard of treatment involves an integrated treatment team, consisting of a psychiatrist creating high-quality medication management; individual therapy that promotes autonomy, self-determination, and resilience; caregiver therapy and support; and employment and education services,” said Nagendra.
Benjamin, who left college at the end of sophomore year, was able to find a trusted therapist, noting that they felt heard for the first time, “like a kindred spirit.”
The therapist did not bring up medication until a few visits in, and at that point, it felt “like more of a suggestion from a good friend,” Benjamin said.
While Benjamin did encounter some challenges, including support staff who seemed to want to rush a re-evaluation and a facility that told them they were overusing the system, Benjamin’s engagement with the healthcare system appeared successful.
In time, with therapy and medication, Benjamin landed a “dream job,” selling computer software and video games, and later had children.
Benjamin’s experience isn’t the reality for most patients with schizophrenia, Nagendra stressed. Most are lucky to access a psychiatrist at all, much less the gold standard of a multifaceted treatment team.
She also noted that some antipsychotics can have “horrible side effects,” such as weight gain, heart disease, and diabetes, and three-quarters of people with schizophrenia stop their medication within 2 years.
In addition, demand for psychiatric beds far outpaces capacity, which explains why people with schizophrenia account for one-third of the homeless population and around 20% of the prison population, she added.
People with schizophrenia also die 20 years younger than those without the disease, Nagendra said. One in 10 complete suicide, but most die of preventable illnesses, such as heart disease and substance use.
Schizophrenia and Race
For complex reasons, schizophrenia disproportionately impacts Black people.
Black Americans are 2.4 times more likely to be diagnosed with schizophrenia than white people, according to a 2017 meta-analysis of over 50 studies involving more than 2 million people published in the Journal of Abnormal Psychology, said Nagendra, who co-authored the study.
There is “no evidence at all” that genetic factors are causing these differences; rather, the disparities are believed to be driven by the downstream effects of interpersonal and structural racism, she said. More specifically, at the interpersonal level, “cultural mistrust” — a “normative response to experiencing racism on a regular basis” — is believed to play a role.
For example, when screening a patient for paranoia, a clinician might ask, “Do you feel like sometimes people are out to get you? Do you feel like sometimes people are following you around?”
But the problem is that these experiences reflect Black people’s “everyday reality,” Nagendra said. Police brutality is just one example of a fear that may not affect other groups as often.
“We can do better,” Nagendra said. “People with schizophrenia deserve to thrive, fall in love, find meaningful employment, drive a car, and maintain their physical health.”
To meet those goals, changes in policy and investments in research are needed, the panelists agreed.
Katherine Koh, MD, MSc, a psychiatrist at Massachusetts General Hospital in Boston, and a member of the Street Team at the Boston Health Care for the Homeless Program, described a concept known as “the duration of untreated psychosis.”
Quite simply, the shorter the duration, the better the outcomes. Narrowing the time a person spends outside treatment requires a continuum of prevention, community-based and facility-based care, and supportive employment and affordable housing, she said.
The Assertive Community Treatment Program, which involves a group of multidisciplinary professionals delivering intensive services to people with severe mental illnesses, has been shown to help in multiple studies, by reducing a patient’s time in hospital and improving functional outcomes, Koh noted
While reducing hospitalizations is generally a priority, when used appropriately, hospitalization can be “transformative,” she added. For that to happen,”we need to focus on building compassionate inpatient facilities, which includes a focus on purpose and community, empowering staff, and reducing burnout,” which altogether create a “culture of healing.”
Workforce Shortages, New Treatments
Only 50% of psychiatrists take any insurance at all because reimbursements are low, and those that do often only accept commercial insurance and not Medicare or Medicaid, Koh said. This is one factor driving the shortage of mental health providers.
Even psychiatrists with the best of intentions are disincentivized from caring for these patients, because of medical school debt. To make this work sustainable, she said, payment structures need to be overhauled.
Margolis noted that new medications and leveraging those that work are also important. Improving clinician education around the use of long-acting injectables such as clozapine, and easing FDA restrictions — the Risk Evaluation and Mitigation Strategies (REMS) program — would very quickly help improve care for patients, he argued.
He explained that drug companies have been slow to develop medications for schizophrenia because of a lack of new biochemical targets. To that end, it’s important to focus on “bottom-up disease-oriented research” — figuring out what causes the illness, what biochemical pathways are impacted, and how those pathways can be interrupted, he said.
New drugs that target muscarinic receptors, which connect to the acetylcholine system rather than the dopaminergic system, are in the development pipeline now and could potentially reach the market “within a year or two,” Margolis said.
Using precision medicine, scientists are also working to define subtypes of schizophrenia and to target treatments in clinical trials on subgroups of patients.
The panelists also discussed FDA meetings centered on patient-focused drug development, which Benjamin was especially heartened to see.
Benjamin also called for more and better education about psychosis, including “simple steps to take in case someone starts to have a breakdown.”
They noted that one of the most important things people can do to help others with schizophrenia is to share their time. “It’s a very precious resource,” they said.
If you or anyone you know is in a mental health crisis or having suicidal thoughts, call the 988 Suicide and Crisis Lifeline.
Shannon Firth has been reporting on health policy as MedPage Today’s Washington correspondent since 2014. She is also a member of the site’s Enterprise & Investigative Reporting team. Follow
The briefing was sponsored by Karuna Therapeutics, Sunovion, Boehringer Ingelheim, Otsuka, Teva, Acadia, and Neurocrine Biosciences.