During my last year as director of the National Institute of Mental Health (NIMH), I was in Oregon giving a presentation to a room full of mental health advocates, mostly family members of youth with serious mental illness. During my tenure as “the nation’s psychiatrist,” the nickname of my role, I oversaw more than $20 billion for mental health research and was eager to share evidence of the agency’s scientific success.
I clicked on my standard PowerPoint deck showing high-resolution scans of brain changes in people with depression, stem cells from children with schizophrenia showing abnormal branching of neurons, and epigenetic changes as markers of stress in lab mice. We had learned so much! We were making so much progress!
While I could see heads nodding in the front row, a tall, bearded man in the back of the room wearing a flannel shirt seemed increasingly agitated. When he started the question and answer period, he jumped up to the microphone. “You really don’t get it,” he said. “My 23-year-old son has schizophrenia. He has been hospitalized five times, made three suicide attempts and is now homeless. Our house is on fire and you’re talking about the chemistry of paint.” As I was standing there somewhat dumbfounded, he asked me, “What are you doing to put out this fire?”
My immediate responses were defensive: “Science is a marathon, not a sprint.” “We need to know more before we can do better.” “Be patient; revolutions take time.” But he knew he was right. There was a disconnect between the work he was doing supporting brilliant scientists and dedicated doctors and the challenges facing more than 14 million Americans who lived and died with mental illness. serious.
Scientific progress in our field it was impressive, but while we were studying risk factors for suicide, the death rate had risen 33 percent. While we identified the neuroanatomy of addiction, overdose deaths tripled. While we were mapping the genes for schizophrenia, people with the disease were still chronically unemployed and dying 20 years early. Our science searched for the causes while the effects of these disorders manifested themselves with more deaths and disabilities, incarceration and homelessness, and growing frustration and despair for both patients and families. In fact, many of the decade’s most refractory social problems—homelessness, incarceration, poverty—could be attributed, in part, to our nation’s failure to care for people with mental illness.
In 2015, I left NIMH. Although I had trained as a psychiatrist and neuroscientist, I wanted to explore this gap between scientific progress and the impact on public health as a journalist in search of solutions. Over the past five years, I’ve met health care innovators, social entrepreneurs, and technology experts in the United States and abroad who have shared ideas and projects that can make a difference for people with mental illness. I heard this refrain all the time: in fact, we are in a crisis, a crisis of attention. Mental illnesses are different from other illnesses and our current approach is a disaster on many fronts. Mental health care is not only ineffectively delivered, but also accessed during a crisis and strategically focused only on relieving symptoms and not helping people recover.
During my travels, I also heard a recurring narrative of healing: Current treatments work; mental illness is not a life sentence; people can recover. I witnessed programs, professionals, and individuals working toward recovery, which is more than just symptom reduction; it is a return to a full and meaningful life. Or, as a very wise psychiatrist who works on Los Angeles’ Skid Row defined recovery for me, “person, place, and purpose.” In other words, finding supportive people, having a place or sanctuary to heal, and discovering a purpose or mission.
The recovery was most evident to me when comparing the trajectories of two young men: Roger and Brandon. A coding prodigy, Roger battled paranoia and conspiracy theories, which consumed his close-knit, loving family. Roger’s parents encountered a nightmare scenario that too often describes the arc of schizophrenia: days in the local emergency room, multiple visits to the local jail, and long periods of homelessness. Like the frustrated father in Oregon, Roger’s parents wondered why, with so many advances in the science of mental health, his brilliant son spoke with voices and ate out of trash cans.
Brandon, like Roger, battled psychosis. But after multiple medications and hospitalizations for schizophrenia, Brandon embarked on an expansive long-term plan that provided him with support in all areas of vulnerability: medications for his delusions, an experimental computer-based training program for his disorganized thinking, training in social skills, support for work, playing the guitar and meditation.
There was no single key to Brandon’s recovery. He relied heavily on the three Ps. More than two decades later, Brandon has had no more episodes of psychosis. The intrusive distracting thoughts, which he attributes to schizophrenia, still bother him, but they don’t dominate him. He is married, serves as president of a nonprofit organization that advocates for brain health research, and travels the country as a spokesperson for people with serious mental illness.
Both Roger and Brandon were diagnosed with a brain disorder and received standard medical care: antipsychotic medications. But Roger’s result is the all too common example of what happens when the treatment is only medical. For a serious mental illness like schizophrenia, medication is almost always necessary but rarely enough. Without people, place, and purpose in the treatment plan, Brandon may have ended up with a life similar to Roger’s.
Currently, the US does not have a system that can help Americans heal and recover. More than half of the counties in the US not have a psychiatrist. Almost half of the psychiatrists We do not accept public or private insurance. If you have a child who needs psychiatric hospitalization, you may need to look out of state. As a former Massachusetts mental health commissioner told me, “It’s easier to get your child into Harvard Medical School than it is to find a psychiatric bed in a state hospital.” Added to access problems are powerful forces of discrimination, which have criminalized mental illness. As a result, our jails and prisons have become de facto psychiatric hospitals and the few remaining public psychiatric hospitals are essentially used as prisons for forensic patients.
Hidden in this dystopian image is an extraordinary and overlooked bright spot. For virtually all mental disorders, we have effective treatments. Medications, psychological treatments, and rehabilitative interventions (eg, supportive employment) are unequivocally helpful, on par with or better than treatments for other chronic medical conditions. However, for treatments to be effective, they must be combined with the kind of ongoing, comprehensive care that most people do not receive. Patients must also receive appropriate treatment, which can take time and experimentation. And negative attitudes toward treatment prevent many people who would benefit from seeking help, or from doing so outside of a crisis.
If I were to re-create the same PowerPoint deck that I once showcased at my booth at NIMH, I would still focus on the promise of science and innovation. Research is our best hope for better care. But you’d also have to temper this enthusiasm with insight from epidemiology: Health care itself explains only a tiny fraction of health outcomes. Much of what we need to get better results is essential, but it is not part of medical care. Social factors (your ZIP code, not your genetic code), lifestyle (how you live, not how many drugs you take), and livelihood (your job, not just your wealth) are far more important to health outcomes than your specific diagnosis or health plan. Recovery depends on the three P’s. But these factors, crucial to recovery, are often not paid for by health insurance and are usually not provided as part of care. To close that gap between scientific progress and public health impact, we need to reformulate what we mean by watch out.
People with mental illness are easy to ignore until “they” become loved ones, neighbors, co-workers. But I use the pronoun they conditionally, because there are only two types of families in America: those that struggle with mental illness and those that do not struggle with mental illness still. To make sure we serve all families well, we don’t necessarily need to know more to do better. We simply need to find the will and the way to deliver to the people, the place and the purpose.
This piece is an adaptation of Insel’s upcoming book, Healing: our journey from mental illness to mental health.
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