For over a decade, psychiatrist and neuroscientist Dr. Thomas Insel headed the National Institute of Mental Health and directed billions of dollars into research on neuroscience and the genetic underpinnings of mental illnesses.
“Our efforts were largely to say, ‘How can we understand mental disorders as brain disorders, and how can we develop better tools for diagnosis and treatment?'” Insel said in an interview with NPR.
But in the very first pages of his new book, Healing: Our Path from Mental Illness to Mental Health, he admits that the results of that research have largely failed to help Americans struggling with mental illnesses.
“Our science was looking for causes, while the effects of these disorders were playing out with more death and disability, incarceration and homelessness, and increasing frustration and despair for both patients and families,” writes Insel.
But Insel’s book is less about the failure of science in helping people and more a critique of almost every aspect of the mental health system.
NPR sat down with Insel to talk about how he came to realize where America had failed and his journey to find the answers to addressing the country’s mental health crisis.
The interview has been edited for clarity and length.
What were some of the scientific discoveries and developments you oversaw during your time at NIMH?
We did several large clinical trials for depression, for schizophrenia, for bipolar disorder. The bottom line for most of those was that in the real world of care, medical treatments were not as good as we thought. And I think that was an important insight that really charged us to say we’ve got to do better in terms of developing more effective medications.
At the same time, I think we had a greater awareness, particularly in the later years of my tenure, that we could begin to combine treatments in a way that was very effective. And where we saw this the most was in how we began to address the first episode of psychosis for young people with a disorder like schizophrenia or with a form of bipolar disorder. What we began to understand is, that by combining medication and psychological and cognitive therapies, bringing in families and giving agency to the young person involved, providing academic and employment support, we could actually help kids recover. And that we could get to a point where kids who had had a first episode of psychosis weren’t destined to have a second episode.
That sounds significant, but did these discoveries translate into better overall mental health of Americans?
One of the things that I struggled with was trying to understand this gap between our scientific progress and our public health failure. I think we’ve got to understand why it is that we’ve been able to do so well on the science [front] and so poorly on the delivery of care for the 14.2 million people with serious mental illness in this country.
Tell me about the time that you were forced to confront this paradox.
So when you’re an NIMH institute director, [you have to] spend some time talking to the public, meeting with family members, or meeting with patient groups.
I was doing that at a talk I was giving to a large group of family members in 2015. I was showing them the spectacular success we had had with stem cell studies of neurons in schizophrenia – what we were able to do for mapping specific genetic variants for autism, how we had created great models on the epigenetics of stress and depression. And somebody got up at the back of the room and said, “You know, I have a 23-year-old son with schizophrenia. He’s been hospitalized five times. He’s been in jail three times. He made two suicide attempts. Look, man, you know, our house is on fire and you’re talking about the chemistry of the paint.”
I was initially quite defensive. But there was a part of me that realized that the pain that he and so many other people were feeling had an urgency to it that our science wasn’t addressing. And that’s ultimately why I left the NIMH, initially going to Silicon Valley and working in the tech industry, and later getting more involved with trying to start what is essentially a social movement to bring attention to the fact that this house is on fire. This is a crisis of care. This is our failure to be able to provide the things that we already have in hand.
What are some of the things that we know work and some of which we have managed to provide?
So, you know, most of the time when you talk about serious mental illness, that means schizophrenia, bipolar disorder, severe depression, perhaps eating disorders. But most of the time when you talk about treatments, people immediately get into a conversation about medication. Is America overmedicated? Is it undermedicated? Are the medications actually safe and effective? All of that is a conversation we have to have.
I think it’s important to realize that medication may be a necessary part, but it’s a completely insufficient part of the care of somebody with a serious mental illness. There are psychological supports that are critical. There are family interventions that are really effective in some ways as what you see with medications. There are extraordinarily important forms of rehabilitative care, like housing support and supportive employment [and] education, things that help people to get a life.
Tell me about the importance of people, place and purpose and how that’s key to recovery.
So I was talking to a psychiatrist who works on Skid Row in Los Angeles, and he said, “You know, we really need to be thinking about recovery, not just acute care here.” And I said, “So what is that? What do you mean by recovery?” He said, “It’s the three Ps, you know?”
And I thought to myself, “All right, three Ps. You got Prozac, Paxil, or I guess it could be psychotherapy, because technically that’s a P. And he kind of just looked at me, you know, out of the corner of his eye, still shaking his head. And he said, “Look, it’s really simple, man. It’s people, it’s place, and it’s purpose. Those are the three P’s. We don’t address those three P’s in our traditional medical care. But if we want people to recover, if we want to see someone have a life, we have to think about people’s social support. We’re going to make sure they have a place, a sanctuary where they have a reasonable environment with reasonable nutrition, and a place that they know is home. And they need a purpose.”
And I just don’t see that happening in what we today call mental health care. It’s not that sort of recovery model. And yet to me, this is the most important point of all.
When I talk to people who’ve struggled with mental illness I hear a lot about the stigma and the isolation that follows that. And we know that social isolation has all kinds of negative, long-term impacts on physical and mental health. Is that partly what you’re talking about?
It is. Of the many things I think we don’t understand about people with serious mental illness, we don’t fully appreciate how loneliness is such a major part. So many times when someone has been psychotic, they end up burning a lot of bridges. And so they don’t have the social capital that they might have once had and that they now need more than ever. And so the beauty of programs like Fountain House [a social club for people with mental illness] is that it begins to give them that opportunity to to regrow that social capital and create connections.
The way I’ve come to think about it more and more is that if you’re a runner and you break your leg, you need that acute medical care to get the leg repaired, but it takes you months of hard work to get back to running again. And we understand that and, by the way, we even support and pay for it. We call that rehabilitative care. And it’s hard and it takes a long time.
But you have a psychotic break, and somehow people haven’t quite come to terms with the fact that it takes a year or more to fully recover and get back into the race. The result is that many people don’t actually get through the whole process of recovery. And they may not get rehabilitative care. Usually it’s not even paid for. So when you find these clubhouses, for instance, like Fountain House, they exist on philanthropy. These are nonprofits trying to make a go. And yet they are for many people critical for this recovery process.
There’s a three-digit crisis line – 988 – that’s about to go live in July. And mental health advocates that I’ve talked to say this is an opportunity to create a better system of care. Tell me what you’d like to see happen with the launch of 988 that could help address this crisis.
Well, two things. One is we have to understand that 988 is not 911 for mental health. With 911, you have a dispatcher who you call, and they contact a first responder who comes to help. [With] 988, the person you call is the first responder. This is telehealth. Something like over 90% of calls will be dealt with by that person who’s on the other end of the 988 line. So we have to get really smart about thinking about what the training is like, who those people are and really understand that they’re not dispatchers. They are truly telehealth professionals who are essentially both the person answering the phone and the ambulance.
The second thing that is absolutely vital and is often overlooked is that 988 is just part of the whole continuum that we need.
Yes, we need a place to call, but we also need the mobile response that’s tied to this. And for some people, [they’re] going to need a place to go. That means hopefully not jail [or] a medical surgical emergency room where we now have this crisis of people being boarded for many, many days at a time with mental health problems. We need places like crisis-stabilization units, opportunities for people to spend maybe 23 hours, maybe seven days, to be able to recover from whatever that acute crisis is. So all three of those: the person to call, the people to come and the place to go need to be part of our crisis response system going forward as the states begin to implement this. I must say, I don’t think that many states have understood how essential it is to have the continuum.