A mental health advocacy group has spearheaded a new initiative to reclassify schizophrenia as a neurologic, rather than a psychiatric, disease. The action is designed to reduce stigma and ultimately obtain more research funding from the Centers for Disease Control and Prevention (CDC).
In May 2018, the Schizophrenia and Related Disorders Alliance of America (SRDAA) submitted a request to have schizophrenia included in the implementation of the National Neurological Conditions Surveillance System (NNCSS) with the 21st Century Cures Act–a new CDC program that was allotted $5 million by Congress to collect data on the prevalence of and risk factors for neurologic conditions in the US population.
“At a basic level, the distinction between neurological and psychiatric conditions is artificial,” Raymond Cho, MD, professor of psychiatry, Baylor College of Medicine, Houston, and chairman of the SRDAA, told Medscape Medical News.
“It’s a ‘no-brainer’ that neurological and psychiatric disorders should be considered under the same umbrella, since everything is mediated by the brain, neural systems, and neurochemistry, but the problem is convincing the rest of society, lawmakers, insurance providers, family members, and patients of this,” Cho said.
The “paradigm shift we seek will be treatment-focused and not finger-pointing, hopefully translating into how healthcare is delivered and paid for, because right now, despite mental health parity laws, how ‘mental health’ treatment is practiced and paid for is very different from the ideal,” he added.
“The term ‘mental illness’ carries discrimination and stigma and is often associated with the misperception that this [illness] is the fault of the patient or perhaps the family–such as the older description of the schizophrenogenic mother,” Linda Stalters, MSN, APRN (ret), CEO and founder of the SRDAA, told Medscape Medical News.
Alright, so health advocates say schizophrenia should be reclassified as a brain disease, like Parkinson’s or Alzheimer’s, instead of a mental illness. Why the clamor now? Simple: As mentioned above, changing the definition could get Congress to unlock more money for cures. Oh, and reduce the stigma for millions of sufferers, says Brianna Ehley for Politico.
Federal health officials, scientists and doctors say conditions that cause psychosis, such as schizophrenia and bipolar disorder, are poorly understood and, in the public mind, often associated with violent behavior. Patients are more likely to be homeless, incarcerated, commit suicide and die younger than those with any other neurological diseases.
The new CDC program mentioned above aims to collect data on the prevalence and risk factors of neurological conditions in the US population. The findings could eventually be used to push the World Health Organization to reclassify the disorder–a complicated process that may take years.
The problem is the CDC only has enough money to study a finite number of conditions, putting disease advocacy groups in competition with each other. The schizophrenia patient advocates’ efforts are just beginning, and to date, no lawmakers have clearly adopted the cause as their own. The Trump administration hasn’t taken a position at this point, although the chief mental health official Elinore McCance-Katz acknowledged there’s data supporting a neurological underpinning to the condition.
John Snook, executive director of the Treatment Advocacy Center, a nonprofit that aims to eliminate barriers to treating mental illness, said the CDC has long ignored some less understood conditions despite alarming mortality rates. The death rate among people with schizophrenia is four times higher than the general population, according to one study.
“To not have the CDC engaged in this sort of outsized burden is very much a signal to other researchers and people in the pharmaceutical industry and to everyone that we aren’t taking mental illness as serious as other illnesses,” Snook said.
Part of the attitude may stem from the fact the cause of schizophrenia is unknown, notes Ehley. Genetics, environment and an imbalance in brain chemistry all contribute to the risk of developing the condition, which may afflict upward of 2 million Americans, according to the National Institute of Mental Health. It’s long been considered a severe mental illness because people with it experience episodes of psychosis involving delusions and hallucinations–often beginning in early adulthood. Treatments typically focus on minimizing symptoms.
Groups pushing for reclassification hope to do the same for other conditions like bipolar disorder, which can also involve psychosis, but are starting with schizophrenia because of its dire consequences. The NIMH ranks the condition among the top 15 causes of disability worldwide and estimates serious mental conditions like it can reduce the average lifespan by 28 years.
“The science is clear, it’s a neurological condition,” said Snook. “If schizophrenia was a disease that we just discovered today there would be no question that’s how we would classify it.”
“It’s a brutal disease,” added Linda Stalters, executive director of the schizophrenia alliance. “We are still treating people like they did in the medieval times.”
But discussions of the disease and its telltale symptoms are often confined to the aftermath of mass shootings, when the focus typically turns to the shooter’s mental health.
Heightened awareness could also increase access to treatments that aren’t always fully covered by insurance. Mental health services aren’t always covered at the same level as other medical conditions, despite federal parity laws.
Arman Fesharaki-Zadeh, an instructor of psychiatry and neurology at Yale School of Medicine, said separating people with schizophrenia and other serious mental illnesses from other brain diseases is an outdated approach that he described as “insane.”
Fesharaki-Zadeh argues that, “They’ve been shunned away from society. I don’t believe in the separation of this diagnosis at all.”
“Those of us who have family members diagnosed with schizophrenia know that this is a brain illness and not a behavioral disorder, says Kathy Day for MyHelios. “We know this because we’ve already tried everything we’re told to do and nothing helps. Except meds. Meds can help. Meds don’t manage behaviors, though. Meds can help the underlying brain disorder that causes what appears to be behaviors. We all know that schizophrenia is not a behavioral disorder.”
“Yet we must send our loved ones to treatment at ‘behavioral health’ centers,” Day notes. “The clinicians try to modify our loved ones’ behaviors with punishment and reward; sadly, more punishment than reward. Parents are often still to blame and are left out of our loved ones’ care. We’re told we need to let go and let them fail. To me, that is unbelievable. If my family member had cancer, would I be told to let go? Would it be practical to let him fail? Of course not. The current system of care needs to change, drastically.”
Or maybe not so drastically. The current system seems to be fine for some mental illnesses. Those disorders that are personality based, and not brain-based, are fine to be treated in the behavioral health system. People with mild depression or anxiety can benefit from therapy or art classes. People with chronic psychosis won’t like benefit from these programs, yet funding for people with schizophrenia and similar brain illnesses often goes to yoga, gardening, and parties.
Day points out, “The people I know who have schizophrenia struggle with socializing. Sending them to groups isn’t practical unless their illness is well-controlled. When groups were recommended for my family member, I’d tell them he already has a group in his head. So why should he go?”
Then there’s the stigma aspect. People tend to fear people with psychosis. When they see a homeless person talking to no one there, they cross to the other side of the street. People believe stigma is the cause of people not seeking treatment. That may be true. People don’t want to admit they have a mental illness for fear of being thought of as they think of the person on the street corner communicating with voices.
I agree with Day that if we move psychotic disorders into medicine and leave all other mental illness in behavioral health, then eventually the stigma will disappear. If people say they need to see their neuropsychologist, you’ll get concern. But no stigma.
Why medicine? Why not? Alzheimer’s is in medicine. Parkinson’s is in medicine. Autism is in medicine. Why not schizophrenia?
Yes, for all the reasons touched upon above, it is time. It’s time to move schizophrenia and all brain-based illnesses into medicine. No more stigma. No more discrimination. Actual brain illness treatment instead of behavioral modification and punishment. As Day puts it:
“No more incarceration due to the way illness expresses itself.”