Director’s Innovation Speaker Series: NAMI and NIMH: Then, Now, and the Future
DR. GORDON: Hello everyone. It is y pleasure to welcome you here to this first instantiation of the NIMH Director’s Series for this fiscal year, this calendar year, this academic year. And it is even more my pleasure to have as my guest today, Dr. Ken Duckworth, NAMI’s Chief Medical Officer, which only begins to describe the many wonderful attributes and sides of Dr. Duckworth.
I’m going to allow him to introduce himself in just a moment, but I wanted to do two things first. One, to tell you that in the past a lot of these innovation series as you know, we usually have a lecture. We decided to do this as a chat instead, so it’s going to be a conversation between Ken and myself.
And number two, we do really encourage you to submit questions. Ken is happy to answer questions from the audience today. And so please use the Q&A function to enter those questions at any point. We’ll start answering them toward the second half of our conversation today. With no further ado then, let me ask the folks to take down the slides and to highlight Ken and myself, and we’ll engage in our conversation.
So, Ken, pleasure having you here today. We’ve known each other now for the better part of six years and more. Please, introduce yourself to the audience today. Tell us what you want them to hear. I might throw in some additional details as we go along.
DR. DUCKWORTH: Josh, first of all thank you for having me. NAMI and NIMH have a long and beautiful relationship together. NAMI has been interested in science and research, and some of that comes from the origin story of NAMI, of psychiatrists blaming mothers for their children’s schizophrenia.
And so the origin story which goes back now 43 years, has a germ of we know there’s something more to this story, let’s research it, let’s learn, let’s find out. So in this way NAMI and NIMH are perfect partners, because we’re both interested in the quest for better treatments, better understanding, better targets, and fewer side effects. It’s a big issue in our field. So that’s how NAMI connects.
I connect to NAMI because my experience of living with my father who had very bad bipolar disorder, got me into psychiatry. So Josh, I was eight years old building a fort in the basement with books and blankets, I think many kids have done that.
And my father, I heard these booming noises upstairs, and I walked upstairs, I’m eight years old, I turn and I look and my father is being dragged away by two police officers, who are not cruel to him. They were taking him away though, and he was psychotic, I now come to understand, and manic.
A few weeks later we’re in a U-Haul driving from our native Philadelphia where the family had been for five generations, to Michigan. And when I was in my 30s I learned that he had lost his job as a Chef Boyardee salesman, but they had transferred him to Detroit, where they needed a man. So this is why, Josh, I believe in college football, public education, and polite driving. I had picked up Midwest features, even though I live in Boston, I consider myself an east coast person, just as you do.
So that’s kind of my back story, but I think it was because of my first person experience I was very drawn to volunteering for NAMI, how to help people practically. And then when I had cancer as a resident and I was treated like a hero, it accelerated my questioning of why are some life-threatening conditions acceptable and in fact heroic, and other conditions something to be ashamed of and hidden from?
So I got casseroles, my dad didn’t get casseroles, people would say Ken you’re the hero, you lost all your hair. I’m like, I don’t think this is that heroic. I think I got the luck of having my DNA snap in this way, and my dad had some unknown genetic environmental combination that led his experience to that.
So this is how you take a kid who always flunked at these science projects, I didn’t do calculus, Josh, I only applied to the medical schools that required no calculus. I became a doctor out of love. I wanted to help my dad, and I want to help people like him. So I’m not the neuroscience whiz, and I’m so grateful people like you and people on this call exist. My job is to take what you’ve learned and give it to our members and the public, and I’m so grateful for that job.
DR. GORDON: Well, you are being a little modest here to some degree, so let me fill in some of the holes on your CV just so everybody knows that Dr. Ken Duckworth is indeed an accomplished professional who brings a tremendous degree of expertise as well as the compassion that he so eloquently described.
So Ken, you went to University of Michigan, public education, and then from there to Temple, I guess at the time, and maybe still, I don’t know, Temple didn’t require calculus of its applicants.
DR. DUCKWORTH: It did not, because I couldn’t handle calculus. Those were my choices.
DR. GORDON: He did a residency in Massachusetts, became a psychiatrist, and then really had a distinguished career as a clinician educator, until the latter part of the 1990s, early 2000s, when you transitioned, and you were the Deputy Commissioner for Mental Health for the State of Massachusetts, and even Acting Commissioner towards the end of your tenure there. And since then you’ve been working as a medical director for various care providers, and now with Blue Cross Blue Shield.
But I know that that’s only one of the more than full time jobs that you have, that you have been since 2003 the Medical Director of NAMI, which is, for those of you who don’t know, is the National Alliance on Mental Illness. And as Ken hinted NAMI is the largest consumer led, consumer engaged, and family member led, family engaged organization for people with mental illness in the US. And in 2020 you were named Chief Medical Officer of NAMI.
So you’ve told us why you got interested in NAMI. Tell us more about what NAMI is, what it represents for individuals with mental illness in the United States and indeed globally.
DR. DUCKWORTH: Josh, you may challenge me, but I have the best job in American psychiatry. It’s the only job I ever wanted in psychiatry. I was part-time for NAMI, so I did everything else a man could do in psychiatry, I worked on a dual diagnosis team, I worked at an early psychosis program, I even worked for a health plan. I left that to write NAMI’s first book, which we might want to talk about later.
But NAMI is this organization of people who get it and are willing to go toe to toe with advocacy, education, and support across the board. Advocacy for research, the doubling of the NIMH budget in the 1990s, the Decade of the Brain, is one of the first origin story advocacy wins. 988, the number that you know that came out in July this year, that’s another NAMI advocacy win.
DR. GORDON: 988 is a national crisis number now, it was established a year ago and went into action this past summer, a real big win for mental health really nationwide for crisis services.
DR. DUCKWORTH: Advocacy, of course, is a team sport, and success has many parents. I want to say NAMI didn’t do these things on their own, but NAMI did lead a lot of activity around mental health parity, around restraint reduction, around 988 and the doubling of the NIMH budget. The AMP Schizophrenia Project, which we’re very proud of, Carlos Larrauri, our former board member is one of the coleaders along with Linda Brady, we might want to talk about AMP.
So in 700 communities across America, everywhere you look there is a support group, there is an education program, there is somebody you can call to talk to, there are often warm lines, support lines. NAMI is one of a kind. I never wanted to work anywhere else. I’ve only been part time because I thought it would probably be helpful for me to learn other things, so to not just be a NAMI person.
I wanted to get my hands into working at an early psychosis program, which is a source of brilliance. And NIMH funded that, along with SAMHSA, and NAMI did a lot of advocacy. Darcy Gruttadaro led that endeavor, and that has changed lives. That’s a public health approach to early psychosis. NAMI is proud of it, NAMI believes in it, and there’s now 300 programs across America. There’s one state that doesn’t have an early psychosis program as I understand it, and NAMI in that state is working the problem.
DR. GORDON: That is great. Who is NAMI? How many people, and who are they?
DR. DUCKWORTH: NAMI is the mother of someone who has severe bipolar disorder. NAMI is a young man with borderline personality disorder and co-occurring addiction. NAMI is a family trying to problem solve a broken, underfunded, and chaotic mental health system.
NAMI are real people, ordinary people, and yet extraordinary people, who are working to improve lives of people who live with mental health conditions, one to one providing support and love, and meta, how on earth do we not have a mental health parity law? Things are so unfair.
Now we have parity, but we don’t have true parity, so now we’ve got to work that problem. NAMI is an organization like no other, it’s my dream job, Josh, and I know you have your dream job, but remember, I’m a guy who couldn’t handle calculus. So I couldn’t do your job, and I’m very blessed to have had this lived experience in my own family, because it gives me some insight into this amazing community that we have.
I’m in Florida, I’m giving a talk at NAMI Florida. There can be 500 people in a room in Orlando Florida, all of them get it. They have a mental health condition. They love someone who has a mental health condition. They’re going to work the problem on the inadequate services here in Florida. Next week I’ll be at NAMI Massachusetts, the following week in NAMI Alaska. What do you see? You see devoted people living Margarette Mead’s dream. A small, devoted group of people is the only thing that can get things done.
DR. GORDON: So a small, devoted group of people has become, over the years, a large group of devoted people advocating for a range of different issues. You mention in particular NAMI’s relationship with the National Institute of Mental Health, and you mentioned the origin story of NAMI, which raises some complicated issues about the relationship with psychiatry.
You’ve seen this organization, been with the organization for 20 years. You’ve seen the organization change, and you’ve seen the relationship with the research establishment and with NIMH in particular grow. Talk to us about that relationship. What were the challenges that NAMI faced in supporting research early on, and how has that changed?
DR. DUCKWORTH: I think people are still afraid of mental health conditions because we still don’t understand so much. And I don’t think that is something you would disagree with, Josh. The hundred billion neuron problem, it’s complicated. So NAMI was always interested in research, particularly around people with psychosis. The goal of getting as much research into understanding the underlying brain pieces component to that, not that it’s all genetics or hardwiring, of course there’s environment, but to try to tease that out.
NAMI was not able to really discuss trauma. This is something I observed in my history at NAMI. I once mentioned trauma, having been trained under Bessel van der Kolk who wrote the best-selling book The Body Keeps the Score, and he was one of my teachers. And I said, can we talk about trauma? And I was in a group of NAMI people. And they all put their hands over their chest. And I realized I had violated an unwritten rule, which as a psychiatrist, they thought that my connection to trauma had something to do with mother blame.
We came to understand by adding PTSD, borderline personality disorder, dissociative identity disorder to the portfolio of things that NAMI takes on, that trauma happens to everyone. And it’s common. Not to everyone individually, but to many people with mental health conditions, there’s a lot of trauma.
And the model of family to family developed by Dr. Joyce Berland lives on kind of a trauma chassis. It’s traumatic to have a child with a severe mental health condition, and that you’ve got to support yourself and them, understand, learn, and listen. So I would say NAMI has evolved over time.
The other piece that wasn’t strong was the first-person experience. It started off as a family organization. That’s the cornerstone, that’s one of the whole stakes holding up the entire organization. We then added and welcomed through elections, board selection, this didn’t happen overnight, but the process, many people with lived experience, people living with schizophrenia, people living with bipolar disorder, people living with severe depression in our organization.
So we’re now the largest group of people with lived experience, and the largest family group. And unlike the Europeans who have two different groups, we take it on, because we can agree on a lot of things, like mental health parity.
And there are occasional times when people will see it differently from their different perspective. I welcome this diversity of thinking, and I’ve kind of seen it from all angles, as a family member with my own mental health journey, which I could discuss as a psychiatrist. I think they’re all valuable, and no one position is right. So that’s who NAMI has become.
DR. GORDON: I’ve seen firsthand the thirst for knowledge, the third for research, the thirst for new findings, new targets, new treatments, as well as research that’s needed to bring the currently available treatments to a broader array of individuals. So I’ve seen that in the membership of NAMI from participating in your conferences, from interacting with members at those meetings and in other places as well.
One of the things that that has led to as you mentioned before is this really wonderful, unique partnership between NIMH, NAMI, and several other organizations, public and private, called AMP Schizophrenia.
For those of you who don’t know, AMP is an abbreviation for Accelerated Medicines Partnership. It’s a program of the Foundation for the National Institute of Health that covers a range of different disorders, but a couple years back, really after many hard years of work on the part of NAMI, we managed to start an AMP partnership program for schizophrenia.
Tell us about your engagement with the AMP process, with the public-private partnership in general with NIMH, how did that all come to be? I think it's a really interesting story of collaboration between an advocacy group --
DR. DUCKWORTH: It’s a beautiful story, Josh. And we did it together. You can’t work at NAMI for a half an hour and not know that we need better treatments with fewer side effects. You can’t hang out at NAMI without knowing the impact of weight gain, metabolic syndrome, tardive dyskinesia, kidney damage from lithium, serotonin syndrome. These treatments are imperfect. And I’m just talking about the biological treatments, we’ll talk about psychotherapy treatments too, but they tend to be a little less complicated in terms of biological side effects.
So I knew within me every day that I live at NAMI we need better treatments. And I was always waiting and hoping and wanting better treatments. And particularly in the psychosis spectrum, because that has been a relative weakness in our overall armamentarium.
I’m a big fan of clozapine, many of my patients in my practice have done well with clozapine, but you can’t predict who will get better, and when they don’t respond to clozapine you’ve kind of tried what I call psychiatric chemotherapy, and if you can’t respond to chemotherapy what do you have to offer other than love and support, housing and community? Those are still a lot, but the idea that you can help with the symptoms. SO that’s something I knew every day.
When Steve Hyman wrote in Science his crushing disappointment that schizophrenia was turned down for AMP in 2014, I picked up the phone and I called Steve. Steve and I are not buddies, I have tremendous respect --
DR. GORDON: Let me interrupt you here just to fill in the audience. Steve Hyman of course, a predecessor of mine, Director of NIMH, now leading the Stanley Center at the Broad Institute for Psychiatric Disease, and he and my predecessor, Tom Insel, worked together to try to create about eight or nine years ago now an AMP project in schizophrenia, and that effort fell short. Sorry, keep going.
DR. DUCKWORTH: Thank you for filling in all those gaps. So Steve Hyman is a science giant. He’s in Cambridge, about five miles from where I live. And I thought, why don’t I just reach out to Steve? Because AMP schizophrenia was turned down. And again, you need enough science and enough buy-in from multiple partners, from pharma, from advocacy groups. And I said, Steve, I’m so grateful you took my call, NAMI needs better treatments. And you have the keys to the genetic kingdom. I wonder if together the Broad and NAMI could begin to start a conversation.
To make a long story short, we had 10 people attend a meeting at the Broad Institute, including my colleague Teri Brister, who was like a legendary participant and leader in this entire endeavor. Your Linda Brady showed up at the first meeting with 10 people.
I want to emphasize what is now a $100 million multi-party project, it was 2015 after I read Steve’s editorial about the tragedy of it being turned down, I read that and it went right through me and I thought this is exactly what NAMI knows, is that we don’t have the discovery that we need.
And so flash forward many years later, the AMP schizophrenia project, I’m in a room with 400 people, this is all pre-COVID, 400 people discussing potential biological markers to drive drug discovery in a collaborative, preclinical way, that multiple industry partners and NIH, NIMH, NAMI, the other leaders in this whole world would work together for a multi-year endeavor, could we discover a better biological target? And so it’s an incredible project, it’s something we did together.
I told my prior boss Marry Giliberti it would take 10 years to pull this off, it kind of happened in three years, we got a little lucky on the science. You came on as the leader of NIMH. We got some breaks. Life is in part about breaks. And the science advanced.
DR. GORDON: There were breaks, but there was also a lot of hard work. So after that first meeting with Linda, Steve, and Terry, and you, and others, there were a series of meetings that NAMI really pushed. And NAMI reached out to the pharmaceutical companies, big and small, to pressure them to get around the table.
DR. DUCKWORTH: We told them we need help, our people need help. Real people.
DR. GORDON: Real people need help. We’re going to come back to that theme in just a moment about real people needing help. But just to finish this out, I remember as my first day as NIMH Director, and you all invited me to come to one of these meetings, and I was impressed that we had a room full of 40 people, including bigwigs from all the different drug companies, including academic scientists, including folks from NIMH.
And it was clear that people were committed to finding a way to work together in the precompetitive space to develop new therapies for schizophrenia. It took probably another couple years, two or three years’ worth of working together, but we finally pulled it off.
DR. DUCKWORTH: Josh, you know when I knew it was going to work? I think you had broken your leg. It was this moment when you got up on the board and you ran the meeting for three hours. And I thought to myself, Josh is now explaining his vision for how we could do this.
So this was an idea of eight people, three or four years in, you come, you’re running the meeting, the Director of the National Institute of Mental Health, it’s like having Juan Soto play baseball, it was beyond my wildest dreams.
And I remember it so vividly because you were hobbling, you didn’t even have to come to that meeting, and here you came, and you spent two or three hours on the board, and what you said made sense to me, and I thought oh my god this is actually going to fly.
DR. GORDON: I was building off this hard work that you had done, that you and NAMI and Linda and all the other things. Let’s talk a bit about AMP, and then I want to come back to this issue of the individual and the individual needs help and talk about that book that you mentioned as well.
So AMP Schizophrenia, it’s an ambitious large clinical project aimed at identifying biomarkers that can help people at clinical high risk. Tell us about Carlos Larrauri, tell us about how individuals like him and Brandon Staglin, people with lived experience with schizophrenia are playing a leadership role, and how that is emblematic of what NAMI can do.
DR. DUCKWORTH: Carlos is a legend within NAMI. He’s a former board member, a nurse, is in law school. He is a polymath. And lovely and brilliant and open. And when it happened, they said NAMI gets to have a seat at the center of the table. And I said to the CEO, Dan Gillison, it’s got to be Carlos. Because he lives with this condition. This is the special sauce that NAMI brings to the table. Lots of smart people in this world, but not that many people can be in multiple graduate programs at the same time while living with the condition they’re studying.
And Carlos has been doing a beautiful job co-chairing this entire five-year endeavor. He described it to me as the kid who likes astronomy who gets to work for NASA. He said it’s the highlight of his career, to be able to study the condition he lives with in this collaborative, multi-partner way. It’s actually quite beautiful to watch.
DR. GORDON: So now we are talking about individuals, individuals living with disorders like schizophrenia and other serious mental illnesses. And that’s at the heart of what NAMI is about, that these individuals are not just suffering from a disorder, they’re recovering from a disorder, they’re playing important roles in crafting the response, the research response, the care response, et cetera.
Let’s talk about now this book that you and NAMI have put out, which is really remarkable in the way that it tries to unite stories about individuals’ lived experience with really practical advice for people struggling with the burden of mental illness, and expertise as well from some of the top scientists and clinicians around the globe.
So tell us about the book that you put together that you’ve written, and let’s start with just the title and what it’s about, and then maybe you can tell us about how it came about as well.
DR. DUCKWORTH: The book is called You Are Not Alone. The book is called that because that’s kind of NAMI’s core ethos, that no matter what you are living with, someone is here to pair with you, to support you, to coach you, or to learn from you. We’re all learning from each other. So the title was a no brainer, given that I wanted to write NAMI’s first book. And I wanted lived experience from real people who use their names to be the center of the book.
Now, this is fairly radical, Josh, and one of the publishers who looked at the book said this is really interesting, but you can’t get people to use their names. And I said that was true ten years ago. What has happened at NAMI is the people have evolved to the place where they want to take what they’ve been through, often their suffering or experience, and give meaning to it by giving it to others.
And so I volunteered, I gave a talk at NAMI Wisconsin, does anybody want to be in the book? You have to use your name, so if you don’t want to be in the book don’t worry about it, the plane is going to fly. Oh no, I want to tell my story. You need to know that I was told at a state hospital that I would never get better, and then I found DBT, which by the way NIMH funded. You need to know that in my family we figured out how to talk to each other. We have a relationship now, and we couldn’t talk to each other for five years. So I knew I had this incredible first-person power.
Studs Terkel for people with grey hair, this book is Studs Terkel meets mental health recovery. For people in your 20s and 30s, this is Humans of New York meets mental health recovery. It’s real people, real experience, real family members and first-person experience. But also because I’m the Chief Medical Officer for NAMI, and all the royalties are going to NAMI, this is a whole love gift.
I asked the best thinkers who do research to also give practical answers to questions, what are my rights in the workplace, how do you talk to somebody who may not want help. I asked Bill Miller, who invented motivational interviewing, to discuss that. It’s a job of mental health intervention. Well, Bob Drake invented supported employment. What is the wellness recovery action plan? Mary Ellen Copeland discussed that.
So the idea is lived experience is expertise, and research randomized control trials is expertise. This book is the practical synthesis of real experience from real people and real scientists having done real work. This is the only book I wanted to write, Josh. I’d be in the bookstore, and I’d see a memoir, another memoir, another memoir, and then I’d turn, another textbook, another textbook, another textbook. And I thought there’s nothing in the space between where you could learn from many people, and just answer the question, do I really have to take these meds forever?
Well, I’m not the king of bipolar disorder, Andy Nierenberg is, so I ask Andy Nierenberg. How do you approach that question, for a man with bipolar disorder, what do you say to him? and he opens by saying this is the most common and important question that I get, so I’m really going to take my time here. He’s thoughtful, he’s gentle, there’s a lot we don’t know. If you want to take this chance you may want to make sure you’re discussing it with your doctor. Most people won’t do well off their meds, and we can’t identify them yet.
It’s compassionate, it’s loving. It’s not all about the meds. I asked Melvin McGuinness who runs the Prechter Center, the largest cohort of people with bipolar disorder on planet earth, what are the nonmedication things that I can do to reduce my risk of an episode. He lays it out.
So the early psychosis model, cognitive behavior therapy for psychosis, which again NIMH has helped to fund, all these things are in the book, discussed by experts, but also by people who have been in an early psychosis program, who use cognitive behavior therapy for psychosis, who found ways to use DBT to alter their experience. So it’s theory and practice, research and first-person experience.
DR. GORDON: It sounds great. Do you have maybe an excerpt that you might want to share with us today? I think you picked something out for us.
DR. DUCKWORTH: Josh, you and I were chatting earlier, and I want to thank you for the opportunity. I’m not going to try to read a long session. But one of the areas of research I wanted to acknowledge, NIMH and Marshall Linehan together developed DBT. Dialectical behavior therapy has saved so many lives. I didn’t structure this to have people answer certain questions. I had volunteers, people found me. So would anybody from Connecticut like to talk to me? I got four people, I got three people from Texas, 38 states, it’s incredible.
This is a young woman who is a graduate student, her first name is Hailey, and when you buy the book you can read her whole name and her whole story. Hailey is a graduate student in her 20s, and she was chronically dysregulated inside. She didn’t know those terms. She became a drummer. She did a lot of drumming, and there are multiple quotes about how drumming was the huge way I coped with mental health, this is her initial quote.
It definitely worked for me, for the mood dysregulation I found, especially when I was feeling negative, feeling angry. I would just go and drum for however long I wanted, some of my favorite albums. Playing the drums made me feel very connected just to music itself, it was very cathartic for me. This is a critical little passage. It’s not only about medical tools. People do recovery strategies.
Then she says, while drumming had been good for mood regulation, Hailey still felt she wasn’t getting the treatment she needed. Probably even two years at that point been on a bunch of antipsychotics and medications that weren’t helping me. Just lying in bed one night and thinking this is just not going to work for me. There’s something else, I can’t say what it is, but this diagnosis, the treatment is not working.
She gets DBT in her life --
DR. GORDON: DBT is dialectical behavioral therapy, it’s a therapy that was painstakingly developed over years, supported by research by NIMH and other organizations.
DR. DUCKWORTH: And Marshall Linehan who won NAMI’s research award is the singular genius behind this. And Hailey quotes, oh my god, after I found DBT, everything just clicked for me, which I’m so grateful for. I know it’s not like that for everyone, I immediately wanted to research everything about it, to become a master in all things BPD.
It was very relieving for me. The most reassuring aspect was feeling as though I could trust my therapist, that it was possible for these symptoms to go into remission. Just knowing that it was possible, that there was going to be a plan, and it was going to make more and more sense, especially if I dedicated to understanding how DBT could help me.
So that’s a good example of a human being who got the wrong diagnosis, she was doing something which has natural themes of DBT, drumming. She went to school for drumming. And then she realized, I should probably get into this mental health space, and she went to graduate school in the mental health space, but DBT was the lynchpin.
And without NIMH and without the genius of Marshall Linehan we wouldn’t have DBT. That’s just one little example. There are people who benefited from ketamine in the book NIMH also funded. I think there are many examples of how the theory and work of NIMH translates into real lives.
DR. GORDON: Thank you for that expert and also for really illustrating nicely the interplay between research care that makes for new advances, and also that is at the heart of the book and what it offers. We’ve gotten a lot of questions already, and so I’m going to turn, even though it’s still early in our hour together, I’m going to turn to some of those questions, and I think it will trigger some good conversations as well. And I know how much you love answering questions, you know how much I love answering questions.
DR. DUCKWORTH: Before I start, Joshua spends every summer vacation at the NAMI convention either in person or virtually answering questions from our probably 1000-person audience. In fact, we’ve gotten to the point where we just schedule the NAMI conventions around his vacation, so we always catch him in a hotel room, it couldn’t be more inconvenient, and he has shown up every single year. And it has been a beautiful thing, because our members want to talk to the Director of the National Institute of Mental Health, they want this access, and you created it.
DR. GORDON: And the Director of the National Institute of Mental Health wants to talk to your members, because we need to know what matters for people in the real world. The first question I’ll choose is about diagnosis, and I bet your book has a lot in it about diagnosis beyond just DBT as you just read.
As we all know, the questioner writes, a huge struggle for those with mental health conditions is getting a diagnosis. That challenge is often compounded for minority and vulnerable groups. What advice would you have for someone who is trying to get a diagnosis, but is limited by diagnostic availability, economic factors, gender, race bias, or other factors?
DR. DUCKWORTH: That is a big question, so let me break it down into a couple pieces. There is a chapter called The Paradox of Diagnosis, which is that it’s beneficial to know your diagnosis, but you are not your diagnosis. And you can do some things on your own, even while you’re trying to figure it out.
The second point in that chapter is the DSM is an imperfect description of symptoms. And that’s very humbling. I had a pretty profound grief depression after my brother died. He was my last sibling to die, I had lost my other sibling to cancer. And if you looked at the DSM, some years I would have had a depression, some years I would have had a grief exclusion, some years I would have had profound grief, and then given that I was still battling a year later you could make a case that I had a new diagnosis called prolonged grief.
So staying humble about the actual diagnostic framework is critical. The diagnoses were not as good as our friends in oncology who can look at your cell line and say this is acute lymphocytic leukemia, this is chronic myelogenous leukemia, there’s different treatment pathways for that.
Now let’s add the culture. I asked Althea Stuart, the first black President of the American Psychiatric Association, to answer the question how do I work with a clinician who is unlikely to understand my culture or background? She gives a very beautiful answer.
And of course, we all have to acknowledge that William Lawson developed a whole literature on white psychiatrists misdiagnosing people who are black as having schizophrenia. And his explanation for it when I’ve interviewed Bill is that the fear and distrust that many people have of the majority white mental health system has been misinterpreted by white psychiatrists as true paranoia. So it’s very humbling.
So we’ve got a lot of problems here. You’ve got the framework is problematic, the descriptions have changed, that’s really important to know, the DSM is description, it’s not underlying hard science, you have the Research Domain Criteria project, which I mention, but that’s not ready for primetime. We don’t have a framework that people can work off of. And just acknowledging that cultural misdiagnosis and the lack of cultural awareness, cultural humility can complicate the problem. It’s a long answer, but that’s a complicated problem.
DR. GORDON: I want to push a little bit, Ken, from a very practical standpoint, I know you care about the practical, when someone is struggling to get a diagnosis, or when a diagnosis doesn’t fit right, whether it’s due to any of these factors, what do you recommend that they do?
DR. DUCKWORTH: I think it is very interesting. Stay with it, see if you can get a second opinion. If you told me that I have A, but that doesn’t square with my experience, and even at my community mental health center, Massachusetts Mental Health Center, where I work for a decade, this is the homeless population, many people had no insurance, I would say you don’t think this diagnosis is right, let me get you to Dr. Mike Khan. Mike is a genius with diagnosis. We have other people here.
It’s the same thing with the poor match, I don’t like my therapist. Even at the community mental health center, a guy like me, the medical director, could say hey listen, you’re not working well, you need Renee Poulakis(ph.), she’s a superstar nurse. You’re having some medical trouble. Renee would probably be perfect for you.
So if you don’t feel that you have the right diagnosis, you haven’t done anything wrong. It may be that the underlying framework is not adequate. It also may be the movie haven’t developed. People have an episode of depression, they’re given an antidepressant, they become manic.
Their diagnosis changes from major depression, single episode, to bipolar disorder. Type three technically, or however you might think of antidepressant induced mania. Your diagnosis changes. So I try to stay humble about the diagnosis, it’s only a tool, it’s not the definitive answer, and to try to get somebody else to take a look.
I also encourage people to chronicle their story, because if you gather your own records, when you gather your records, you’ll find out what they think your discharge diagnosis is. When you go into a hospital they have to write a discharge for you. They’ll say I think this guy, Ken, has schizoaffective disorder. Well, that’s interesting information. What did they see? What were they describing?
Because you have to be the master of your or your own family members’ treatment plan at the end of the day. The system is chaotic and fragmented, a lot of those terrific doctors at community mental health move on, it’s very stressful work, they’re overburdened, they’re under paid. So I think the idea is to stay with it.
Diagnosis is important, like for Hailey, she had a diagnosis of depression that was not helpful for her. The diagnosis of borderline personality disorder transformed her life. So there are examples like that, but keep questioning I would say the diagnosis. Keep an open mind. This is not as tight as things below the neck.
DR. GORDON: Let me mention just briefly, and then we’ll move on, that one of the key priorities for National Institute of Mental Health is developing better ways to describing and categorizing what goes wrong with individuals with mental illness, and make it adhere better to the recommendations for future treatment. And much the ways you just described it, it wasn’t just the diagnosis of borderline personality disorder, but the fact that we had an evidence-based therapy that worked for Hailey.
Let’s move on because you mentioned access, and you mentioned public psychiatry venues, et cetera. Earlier on, in our conversation, you talked about mental health parity. So there’s a question about that. Please describe what you mean by mental health parity, and why it’s not adequate now.
DR. DUCKWORTH: My opinion. So I testified before Congress that I had cancer and I was treated in beautiful facilities, and I got nothing but amazing care, and my dad was treated in crummy facilities that have since closed due to lack of funding.
And I had follow-up care, I had multiple episodes of follow-up after my cancer, that I testified before the Health Education Labor and Pensions Committee with Senator Kennedy and Senator Wellstone from Minnesota, they were extremely interested in this idea, and they wanted to make parity happen. To make a long story short, if you can’t find a psychiatrist to accept your insurance, that is a kind of parity problem, because the payment structure is still not meeting the market demand.
So parity 1.0 was you can’t discriminate. So when I had a private practice, Josh, and again I’ve done everything a person can do, you used to have $500 of outpatient benefits in Massachusetts, that’s what you got, and two psychiatric board detox related admissions. After that there was no coverage.
And this was legal. So you could go to see your internist for diabetes three times a month, but after you saw me, let’s say I charge $100 an hour, five times, you were done with me for the year. You could go into the hospital as needed for diabetes, but you only had two that were covered by insurance.
This is version 1.0 of parity. You can’t do gross discrimination based on the underlying diagnosis. That’s version 1.0, 2011. We’ve got that. That’s step one. So a health insurance company cannot say oh, you’ve got that thing we don’t value? You can’t have anything.
However, version 2.0, you can’t find a child psychiatrist who will take your insurance. If you can find a child psychiatrist who will take your insurance, you should immediately drive and purchase lottery tickets. And the reason that’s important is because child psychiatrists are not paid commensurate to their demand.
There are no private practice radiologists. There is no oncologist who takes cash. There is no surgeon in America who works on a fee for service, write me a check, $38,000, I’ll give you a new hip, basis. They all feel adequately compensated by health insurance.
So mental health parity 2.0 gets to the very sticky wicket of how come you can’t find a social worker, psychologist, or child psychiatrist to accept the same third-party payment that you can go and get physical therapy, you can get your hip replaced, you can get your diabetes monitored. So it’s advanced conversation.
1.0 has been accomplished, you can’t do gross discrimination. But the truth is most people have trouble accessing mental health. And that’s in part due to underpayment by health insurance companies. I mean, that’s not a popular position, but that’s the reality.
There was a study done in 2014, more than half of psychiatrists take no insurance at all in America. None. And the reason they described is underpayment by insurance plans. So it’s not just me, Ken, pontificating, this is a well-known study, and it has gotten worse as demand has risen in the pandemic.
Also, Josh, medical students are burdened with a quarter of a million dollars of debt, plus or minus. Then you put them through five years of training and beat them up and sleep deprive them. Now they’re 32 years old and broke. They want to have a little house. They want to have a baby maybe with their spouse.
We’ve created the conditions that you can get paid $X, let’s say $200 by health insurance, a made-up number, or $300 in the private market. They have a quarter million dollars of debt, they have a little baby, they have a tiny little house. I don’t know if you can afford to buy a house in Bethesda, you can’t in Boston anymore.
So this is the dilemma we’ve created as a system. Medical student debt plus underpayment, people are like you know, I’m not going to do it this way, so they take cash. And that’s not true for any radiologist, cardiologist, or surgeon in America. This is why parity 2.0 needs to happen.
DR. GORDON: We need to be able ensure that parity doesn’t just mean if you can find a perfect provider we’ll pay for it, but actually we’ll pay rates that are prevailing rates, so that those providers actually want to work in the context of the healthcare system.
DR. DUCKWORTH: It is a big lift, but we’ve got the first one done where you couldn’t do ridiculous discrimination. This is more nuanced.
DR. GORDON: The next question comes in from someone asking a little bit of a follow-up to something I mentioned, about the relationship between the goals of NAMI and the goals of research organizations like NIMH. Are NAMI goals, either those of families or those of mental disorders, ever at odds with mainstream medical research, and if so what are those issues where there is tension between those two groups, and how does NAMI or NIMH work to overcome that tension.
DR. DUCKWORTH: It is a great question. I think no-one would know. If I had your job, Josh, I would be overwhelmed. But the first question that I would ask, which if you go back to the original American Psychiatric Association meeting, then called something like the American Asylum of Insane Superintendents, something like that, they asked a question, with our research money should we work on people who are here now, or should we try to understand what the heck is going on.
This is the core tension. Do you do basic science to ask questions that will yield fruit over decades to transform lives in a generation or two, or do you work with the people you have now and accept that you don’t know how these things work. To me that’s how I see it. People have different opinions on that.
One of the things that you did that I’m very grateful for is you put together a portfolio, here’s our research portfolio in this practical, here’s our research portfolio in this biological. I’m not against biological basic research. NIMH is the only organization that’s going to do it. You talk to people at pharmaceutical companies, they’re not doing it. What they do is create molecules based off of models. They’re not doing fundamental neuroscience nuts and bolts.
So I want to understand the cause of bipolar disorder, the current answer is I don’t know. How does lithium work? I don’t know. Some theoretical membrane stabilization calcium channel thing? Okay, fine, but that’s theoretical, it’s not true and it’s not based in reality, and I can’t tell you if you have three kids what their actual risk is genetically. Those are questions that can only be answered if you have better underlying neuroscience.
At the same time, things like DBT are helping real people right now, doesn’t get to the question of why are some people so dysregulated? We call them, people with borderline personality disorder for example, it doesn’t answer the underlying biological question, it provides a practical treatment to help people. I think it’s a balance, I think people do disagree about where you strike that balance. I think there’s been some tension about that.
Many NAMI people would want to put the whole eggs in the current basket because they love people who are suffering, and I respect that. And this is why we try to get many people’s views and voices, but the AMP Schizophrenia Project acknowledges that we have much more to learn. This is kind of new money in a way, new collaboration. You have to do something with the underlying models. You have to.
And NIMH doesn’t do supported housing. I love supported housing. When I was the Commissioner of Mental Health, I funded supported housing to the maximum amount humanly possible. You helped research that I’m sure with Sam Tsemberis’s Housing First model, I’m sure that money came from NIMH or SAMHSA, but the creation of stable housing is probably not the best use of the one neurobiological institute devoted to the brain around mental health. So these are all questions that people ask, and I know there was a lot of discussion, with Tom Insel’s book, about how you make those very difficult decisions, which I just want to say I think they’re hard questions, I really do.
DR. GORDON: Well, I appreciate that description. I don’t have anything to add to it, but I do want to take the moment to answer another question, which really builds off of what you just said. Please describe the AMP program for schizophrenia more completely.
And I think while I would refer you to the website, which is AMPSCZ.Org, briefly the AMP Schizophrenia Research Program is an effort to study individuals at clinical high risk for psychosis, these are teenagers and young adults, develop biomarkers that help predict whether they are at high risk or low risk for psychosis, high risk or low risk for other adverse outcomes, and then test treatments in these individuals.
And it's a collaboration between NAMI and NIMH, several drug companies and other nonprofit organizations, as well as investigators from across the globe and the Wellcome Trust as well. A lot of different collaborators, and I encourage you to visit that website to see that.
DR. DUCKWORTH: One other piece that I would mention, Josh, is there is an AMP for Parkinson’s Disease. There’s an AMP for rheumatoid arthritis, there’s an AMP for Alzheimer’s Disease.
And one of the things that Steve Hyman said in that essay that so moved me, there’s no AMP for a serious mental illness that are some of the greatest causes of disability on planet Earth, and it just went through me like a lightning bolt, I’ve got to call Steve.
AMP is a project that NIH does for many conditions that cause suffering, and we don’t understand well enough. And you probably would know the whole list. Rheumatoid arthritis, Parkinson’s Disease, Alzheimer’s Disease are ones that I know. Schizophrenia is now one of the family. It’s a kind of research parity. You have to be able to study schizophrenia and severe mental illness just as we study things like rheumatoid arthritis. All important.
DR. GORDON: Lots of great questions, we’re not going to get to all of them, I’m really sorry. This was the one that I think Ken you’re really suited to answer. Could you talk about psychiatric hospitalization and inpatient care? My impression is that this is one type of care where patients and families are particularly dissatisfied, and sometimes feel that it can do more harm than good.
DR. DUCKWORTH: It’s absolutely true. Marshall Linehan has said nobody has ever done a study that psychiatric hospitalization helps anyone. It is complicated by the fact that inpatient hospitalization probably saved my father’s life multiple times. It’s complicated, isn’t it? It’s hard to work in inpatient psychiatry, these jobs are underpaid, they’re quite intense for the staff members I have worked on inpatient hospitalizations.
So for example, let’s just take DBT, Borderline Personality Disorder, people would ask Marshall Linehan in my presence what’s the best inpatient hospitalization program for DBT, for borderline personality disorder. She said the best program is an outpatient life with DBT. Like the hospital is not the place to solve that problem.
I would say for patients I have gotten on Clozapine I often need a hospitalization to accomplish that. These are complicated medicines. They cause problems with heart rates and white cell counts, you need staff around you.
I think the fundamental problem is workforce. I think we don’t have an adequate workforce in our hospitals. Back to mental health parity, some hospitals are not well paid, people have been traumatized in hospitals, I freely acknowledge that. I did a lot of work on restraint reduction in my career, and I developed that in one of the chapters in the book, is how the profession needs to be more mindful of the environment and experience of people in inpatient facilities.
DR. GORDON: I am going to try something a little different for a minute or two, we’ll see if it works. I’m going to ask some very difficult questions, see if you have some really short answers that might help. I’m going to take the first one to give you an example. Does NIH believe that bipolar disease can be cured, or more severe mental disorders cured? We can’t do it now, but we believe in the future we want to be able to do that. That’s stated in our mission. All right, how can NIMH or NAMI help to reduce stigma around mental illnesses? One sentence answer.
DR. DUCKWORTH: Buy the book. Real people talk about their experience. The research shows that contact with real people with mental health conditions changes and improves attitudes.
DR. GORDON: So let’s talk about our mental health issues. Who legally can give a mental health diagnosis? Psychologists, psychiatrists, either one?
DR. DUCKWORTH: Licensed practitioners.
DR. GORDON: Let’s try one more. What do we need to do to advocate for changes in the law around mental health and police responses to crises?
DR. DUCKWORTH: Crisis intervention training, CIT International, the National Alliance on Mental Illness. All these things are local.
DR. GORDON: That was a successful experiment. I wish we could do more, but we knocked off a bunch of questions. I wish we could give more full answers, because each of them, and each of the questions we didn’t answer deserve more. We all deserve more.
I’m not going to advertise for a book, but I will say that the book that Ken wrote on behalf of NAMI, for which he doesn’t receive any royalties, it all goes to NAMI, is really a good resource, but so is NAMI, and there are other organizations as well that are really excellent resources that Ken mentioned.
And Ken, I just want to again thank you for the dedication of really your whole life in supporting individuals and families with mental illness, and in your devotion to advocacy, your devotion to evidence based care, to promoting research, and for joining us today. So thank you very much.
DR. DUCKWORTH: Thank you for having me, and thank you for your devotion to neuroscience and to the people who live with brain-based conditions.
DR. GORDON: Goodbye everyone, I look forward to seeing you at the next Director’s Innovation Speaker Series. And if you want your friends or loved ones to watch this it will be available on the NIMH website within a few weeks. Thanks Ken.