A better way to help New Yorkers with mental illnesses – New York Daily News

Mayor Adams has announced a new policy to involuntarily hospitalize unhoused New Yorkers with severe mental illness. His plan relies on the authority of the city Department of Health and Mental Hygiene (DOHMH) and enforcement by the New York Police Department (NYPD). As a person who was diagnosed with schizophrenia while I was working at DOHMH, I know this new policy will not have the impact the mayor is promising and that more effective options are possible.

It was January 2018 when I began putting on noise-canceling headphones to block out the voices I could hear in my third-story apartment in Brooklyn. When that did not work, I put on a beanie. Then a second hat. And earplugs. I stopped being able to sleep.

Looking at myself in the mirror, I laughed, wondering what was happening. But, over the next few weeks, the voices became more persecutory, and I could no longer laugh. I became convinced I was being stalked by someone who had placed microphones and cameras in my bedroom and bugged my personal laptop and phone. So I left my apartment and checked into a hotel so the “stalker” could not taunt me with his voice and the devices could not record me. All that night, the voices kept taunting me, and I realized I needed help.

When I went to an emergency department, the doctors tested my blood and took images of my brain. When those came back normal, they admitted me to the psychiatric wing for treatment of “new onset psychosis.”

Inpatient psychiatric care is a mystery to most. Patients are usually kept behind locked doors in rooms with barred windows, and outside visits are severely restricted. In my situation, I had a bed next to another patient in a room without any doors. Other patients would sometimes wander in and stand over me while I was sleeping. At one point, an attending physician came in with a group of medical students and quipped he had “never seen pupils like mine” before, as if I was a caged animal at the zoo. I asked to be able to walk outside for a few minutes just for some fresh air, but was told no.

Like many who have experienced inpatient psychiatric care, I came away ashamed of my new diagnosis and traumatized by the conditions on the hospital floor. Even to this day, I still have nightmares of shadowed figures standing at the foot of my bed.

Because mental illness is still so stigmatized, anyone who has gone through it often finds it difficult to discuss. Moreover, this silence has resulted in an inaccurate counter-narrative: that people with schizophrenia pose a violent threat to others. A recent survey of adults in the United States reported that the belief that schizophrenia was associated with dangerousness actually increased from 1996 to 2018. In fact, most people living with schizophrenia are not violent and are more likely to experience violence in their lifetimes.

This is one reason why the mayor’s new approach to using NYPD is more likely to threaten than improve the health of people with severe mental illness. NYPD officers are not trained to recognize psychosis, and people with mental illness are often harmed in police encounters. Of those harmed in these encounters, they are likely to be disproportionately Black or Brown. People of color have greater barriers to accessing care and higher rates of untreated psychosis before receiving initial treatment.

When combined with the known risk that people of color face during encounters with police, the likelihood that a person of color with psychosis is harmed is even greater. Daniel Prude, an unarmed Black man with mental illness, was killed by Rochester police after a hood was placed on his head and he was pinned to the ground. Eudes Pierre, a Black college student, was shot and killed by New York City police during a mental health episode.

Even if more potentially lethal interactions with the police can somehow be avoided, the mayor’s new strategy is a Band-Aid at its best and an affront to human dignity and autonomy at its worst. Getting started and then staying on treatment is difficult enough for patients who are fully insured, let alone those who are uninsured. Health insurance companies often refuse to cover newer antipsychotic medications until patients have provided documentation that they have tried less expensive alternatives (I received a shocking monthly quote of $1,419.85 for my medication when I first switched plans in September).

Until New Yorkers with schizophrenia can receive consistent long-term care at no cost, they will be forced to rely on a cobbled mix of drug samples, manufacturer coupons, and cheaper first-generation antipsychotics that often come with severe side effects. Without the stability of permanent housing and free health insurance coverage, the cycle of short-term hospitalizations and street homelessness will continue.

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I am fortunate to write from a position of extreme privilege. At the time of my first and only episode of psychosis in 2018, I had employer-based health insurance and a strong support network that included a physician roommate and a dear friend who took time off from work to help me through the worst of it. My parents flew in to see that I was getting the medical care I needed and had clean laundry and food at home. With the right medication, I was able to resume my work and live independently.

As both a public health professional and a person living with schizophrenia, I believe a few key policy changes could have dramatic implications for New Yorkers with severe mental illness.

First, New York State must pass the New York Health Act, a universal healthcare law. Even if universal healthcare cannot be guaranteed due to cost, a modified version of this law could at least ensure universal access to healthcare for people with severe mental illness, such as schizophrenia, bipolar disorder, and suicidality, similar to other programs that provide no or low-cost medical care to people with HIV, tuberculosis, and other medical conditions of public health importance.

Second, New York City must immediately provide free, dedicated, supportive housing to anyone with severe mental illness. Using existing, empty hotel space is far from a perfect long-term solution but has the potential to protect people from what can sometimes be dangerous congregate shelters.

Third, the mayor must allocate additional funding to expand community models of care such as mental health clubhouses. Clubhouses, like Fountain House, are local, community-based sites that provide peer support and socialization as well as access to services. The mayor’s health commissioner, Dr. Ashwin Vasan, was serving as the president and CEO of Fountain House when Adams hired him. The Clubhouse Model has been proven to improve quality of life, promote employment, and reduce hospitalizations for people living with severe mental illness.

It can be easy to ignore people living with schizophrenia. After all, the concept of losing one’s sense of reality is terrifying. And many people with severe illness are unhoused, incarcerated, or hidden away in hospitals, making it nearly impossible for them to advocate for themselves. As someone who has lived it, I can say that psychosis is a horrific experience that is difficult to put into words. But we cannot continue to look away. It is time to end the stigma of schizophrenia and work toward real, compassionate public health policy solutions for people living with severe mental illness.

Whittemore is an infectious disease epidemiologist at the Cornell Center for Pandemic Prevention and Response.