In 1946, Life magazine published an exposé on mental hospitals, focusing on the Philadelphia State Hospital at Byberry. The title: “Bedlam 1946.”
That dreadful facility, like so many others, eventually closed. A good thing? Not completely, according to Kenneth Paul Rosenberg, who maintains that people simply went from one horrific situation to another, from the grossly inadequate institutions to the dangerous streets. In neither case is psychiatric care even close to sufficient.
Rosenberg, who grew up in Philadelphia, is a Manhattan psychiatrist and a distinguished fellow of the American Psychiatric Association. He teaches at New York-Presbyterian/Weill Cornell Medical Center. He’s also a Peabody Award-winning filmmaker and now, an author. His book, Bedlam: An Intimate Journey Into America’s Mental Health Crisis, was published this month. The result of a seven-year investigation into a system that has failed the one in five Americans who experience mental illness, it includes harrowing patient tales and prescriptions for change.
Earlier this year, his full-length movie Bedlam premiered at the Sundance Film Festival. It, too, looks at the public-policy failings.
We spoke to him recently about his book.
You say that serious mental illness is “the greatest social crisis of our time.” Why?
Currently, the major provider of mental-health services in this country is not the hospital system, but the jails and the prison system. Because psychiatric care beds are few and far between, the front lines of treating people is not in hospitals, but in the emergency rooms. These are the de facto mental institutions of our day. The greatest gathering of people with serious mental illness is not in a day hospital or community treatment center. It’s on the streets.
If all that weren’t enough, Big Pharma has largely pulled out of neuropsychiatric drug development. Some of the medicines that people are getting are new, but the fundamental molecules were developed 70 years ago.
When you look at the cost burden of mental illness globally, it will soon exceed, according to the World Health Organization, the cost burden of cancer, cardiac disease, and all noncommunicable diseases combined.
Mental illness affects one in five families. And it remains poorly diagnosed, poorly treated, poorly understood, and therefore, in my view, the greatest social crisis of our time.
You have a personal connection with serious mental illness.
My sister, Merle, lived and died as a consequence of serious mental illness. She developed that illness when I was 14 years old, and that is why I became a psychiatrist later. She was 21. People with serious mental illness often develop it in young adulthood. Like many people with serious mental illness, she was not aware that she was ill. She lived, as did my family, in denial of her illness. She availed herself of treatment in a limited way, but her treatments were poor and her compliance was terrible.
Merle had a psychotic disorder, most likely schizophrenia. Hard to say exactly what mental illness my sister had because the problem with psychiatric illnesses is that diagnoses are phenomenological. It’s not like when you have a sore throat and you get a swab and the test results show you have strep throat. Her illness manifested itself in delusion, hallucinations, and in being disconnected from reality, having magical thinking. She was unable to function in the world.
When she died, at age 55, the official cause of death was a heart attack. But, in my estimation, the cause of her death was serious mental illness. On average, people with serious mental illness live nearly 30 fewer years than the rest of the population.
One of the most upsetting chapters of your book was about the criminalization of serious mental illness.
I think it’s fair to say that it becomes a crime to have a mental illness in America today. The first thing that often happens is that the police are called. There aren’t many diseases for which, when you have an acute episode, you call the police. So already, they’re in the law enforcement system.
Then, there aren’t enough treatment center beds to take them to. So the police often have the option of taking someone to an emergency room or a jail. If they take the person to the jail, they can leave them there immediately. If they take them to the emergency room, they have to wait — for them to be triaged, accepted as patients, and so on.
Also, people with serious mental illness often commit petty crimes. That brings them more to the attention of the criminal justice system. Then they get put on probation and they don’t show up, because they don’t follow the rules. In some states, if you have a mental illness, you’re 10 times more likely to be incarcerated than in a hospital.
What people say is that we have not deinstitutionalized the mentally ill. We have transinstitutionalized them — from the asylums to the streets and jails. What would be better is a multipronged approach. We need community mental-health centers that are properly funded and equipped and engineered to handle people with serious mental illness. There are fairly good models for this.
Secondly, we need changes in the laws. We have to weigh personal autonomy against letting people die as a consequence of their mental illness. We can’t have draconian treatment — a psychiatrist throws someone in an institution for their life — but we also can’t have people deteriorating and dying on the streets, living desperate lives, and often the victims of violence much more than the perpetrators.
You say there have been no blockbuster drugs in psychiatry for decades.
First of all, the brain is very complicated. So it’s not easy to develop new drugs. Secondly, as a society, we have not made serious mental illness a priority. We have not been marching in the streets demanding a cure, the way it has happened with breast cancer and HIV. We are at a moment when we are saying that this is absurd.
We have good medications, but they are not the best. They have serious effects; 50% of people stop their medications because of the side effects.
Also, we have left it to the pharmaceutical companies to develop new drugs. And they haven’t because there are no recent breakthroughs in neuroscience that companies can leverage to readily develop new medications. I understand pharma companies have an obligation to their shareholders. But as a society, we have an obligation to our citizens. We need more basic science into serious mental illness. That’s the job of government-funded and university-based research. Then, pharmaceutical companies could come aboard with the medications.
At the end of the book, you offer tips for those with serious mental illness and their loved ones. What did your experience with your sister teach you?
We cannot fix this problem alone. We can’t fix ourselves alone. We can’t fix our relatives alone. And we can’t fix our broken system alone. If you’re a person with serious mental illness, you need help — the help of a family, the help of a community, the help of doctors and health-care providers you can trust. You need to reach out to support networks — the National Alliance on Mental Illness is one.
We need advocacy. We need to talk about it. It doesn’t matter who you are. You could be a public official, a billionaire, the smartest person on Earth, but you can’t invent new medications on your own. You can’t find a hospital bed for yourself or a loved one where there is none.
What my sister taught me most of all is to be humble. I had the belief that when my parents passed away — they were loving and kind, but they were in denial — I could help my sister. I would be able to fix it. Well, I wasn’t. She taught me the message of the book: You can’t do it alone. You need help on every level — personally, in a family, in society.