What We Know About Treating Brain Disorders
TOM GJELTEN, HOST:
This is TALK OF THE NATION. I'm Tom Gjelten, in Washington. Neal Conan is away. The wars in Iraq and Afghanistan focused new attention on brain injuries and post-traumatic stress and underscored how much we still don't know about how the brain works. General Peter Chiarelli, the former vice chief of staff for the U.S. Army, spent much of his tenure dealing with soldiers who suffered from brain disorders.
It was frustrating work, and it left him wanting to learn more about the brain and what can go wrong in brain functioning. General Chiarelli now heads a group called One Mind for Research. The mission is to promote and reform brain research and help find cures and treatments for brain disease.
And we'd like to hear from you. If you or someone you know is dealing with a brain disorder, disease or injury, or if you have questions about what we know and don't know about the brain, give us a call. Our number is 800-989-8255. You can also email us: email@example.com. Or you can join the conversation via our website. Go to npr.org, and click on TALK OF THE NATION.
Later in the program, the Curiosity rover lands on Mars. But first, the state of brain research. General Peter Chiarelli is the chief executive officer of One Mind for Research. He retired from a four-decade career with the U.S. Army in January, finishing as vice chief of staff. And he joins us now from member station KUOW in Seattle.
And Dr. Tom Insel is a neuroscientist and psychiatrist and the director of the National - excuse me - Institute of Mental Health. Both of you, welcome to TALK OF THE NATION.
PETER CHIARELLI: Thanks, Tom.
TOM INSEL: Thank you.
GJELTEN: And General Chiarelli - yeah. Let's begin with you, General Chiarelli. So prior to becoming CEO at One Mind for Research, you'd been vocal about how little we know about brain disorders. Since joining the organization, what have you learned about the way brain research is conducted?
CHIARELLI: Well, it's - basically, what has happened to me since I've had the opportunity to fully concentrate on this is I only believe even stronger than I did before that the research on the brain and what we understand about the brain is 30 to 40 to 50 years behind what we know about the other organs of the body.
So it's very, very frustrating. We just don't have good diagnostics for traumatic brain injury and post-traumatic stress. They are not available. And, in fact, many of the drugs that we prescribe - in fact, all the drugs that we prescribe are off-label prescriptions. They're drugs that were created 30 to 40 years ago for something other than traumatic brain injury or post-traumatic stress. And there are no drugs in the pipeline to help people.
So the state of research of the brain is just lagging, and we need to jump-start it. We need to understand this more, because it's a tremendous bill for our country. We estimate somewhere in the vicinity of a trillion dollars a year.
GJELTEN: Now, of course, as vice chief of staff of the Army, you wanted to see the Army and the rest of the military deal more effectively with the effects of traumatic brain injury, but you were - you've written and said many times how frustrated you were that even in the scientific community that you were dealing with, there was really sense of uncertainty about brain injury, traumatic brain injury, and even the functions of the brain that were affected.
CHIARELLI: Well, that's true, and I see that still today. You can go to any so-called expert, and he'll give you his diagnostic tools that he uses for post-traumatic stress. But if you go to another one, many times you'll get something totally different. There isn't a lot of agreement, because we just don't know enough.
And I think that's true just about in anything that when you don't know enough, you have a whole bunch of experts, but the experts don't necessarily agree. And that's really where I believe we are today.
GJELTEN: Well, have you learned anything, General Chiarelli, about why there is this problem of disagreement among experts? Is it - does it reflect a lack of cooperation in the research community? Or does it simply reflect the lack of knowledge?
CHIARELLI: Well, I don't think any of the research has been done to a scale that we need it to be done to get us the kind of answers that we need. And we just don't have good diagnostic tools. You know, if you go into a room with 100 people and ask who has high blood pressure and no one raises his hand, you can go around with a blood pressure cuff, and you can pretty well ascertain who's at least at risk and who has high blood pressure at that particular moment.
But there are no good diagnostic tools for many of the diseases of the brain. Now, the brain is a much more difficult organ to understand. And there is stigma associated with these diseases. So we haven't invested, I believe, the money that's necessary to get at these problems.
GJELTEN: Well, let's raise some of those issues now with Dr. Tom Insel, who joins us by phone from his office, by a smartphone from his office in Bethesda, Maryland, where he directs the National Institute of Mental Health. Dr. Insel, General Chiarelli just made a really remarkable statement. He says that from his point of view, research about the brain is lagging decades behind where research stands with respect to other organs of the body. Is that sort of a widely held view within the community of those who do research on the brain?
INSEL: Well, I think it's fair to say that for most of us, we see the brain as the next great frontier, and maybe the last great frontier for trying to understand the human body. It is true that unlike the way we measure blood pressure or the way that we can ascertain infections in other parts of the body, it's just very difficult to assess brain function with the kind of precision that we'd like to have. And we don't have some of the tools we need.
And particularly when you're talking about the translation of fundamental science into clinical tools and clinical tests, we're lagging way behind. And that's where the real problem is. I would say the fundamental science about the brain has really undergone a revolution over the last decade or two, and we are far ahead of where we were, let's say, 20 years ago. But taking that information and turning that into something that's clinically useful has still been a struggle.
GJELTEN: And, of course, General Chiarelli, in the Army, wanted what he said were diagnostic tools so he could find out which soldiers were suffering from particular brain injuries. And I imagine that the lack of diagnostics is explainable by the lack of understanding of brain functions, Dr. Insel.
INSEL: You know, it's even inherent in the way we talk about these. We call these mental disorders or mental illnesses. But as General Chiarelli said, bottom line here is that these are brain problems. These are brain disorders. All of our diagnostic tools at this point are behavioral assessments. They are subjective, and they depend on what somebody tells us or what we see.
Now, that's not true for the way that we diagnose heart disease, the way we diagnose hypertension, the way we diagnose diabetes or almost any other part of medicine. We've got to do better - if these are truly brain disorders - to use tools that assess brain function to be able to make a diagnosis and to know when you go into a room of 100 people who has something like PTSD or who's, even more importantly, who's at risk for this after a traumatic event so you can make sure that you prevent the emergence of PTSD two to three months later.
GJELTEN: Well, Dr. Insel, what's the state of research on these issues right now? Has there been any progress? You say that right now, many brain injuries are diagnosed by behavioral indicators. Are there any markers, or, you know, what is research leading you to look for in terms of sort of more objective signs of brain dysfunction?
INSEL: There are a series of different approaches. Some people have looked for the appropriate blood measurement, a change in a hormone level or the change in some neurotransmitter that might predict which 10 percent of people after a traffic accident or 20 percent of people after a head injury are likely to develop PTSD.
None of those thus far have fully played out for us. There's also interest in trying to use brain imaging to see whether there's a signal there that we could pick up, and there's interest in even trying to find cognitive factors, something that - about the way that a person thinks or behaves that could be an indication of who's at greatest risk.
Here's our problem: All of those approaches - which have shown some benefit and some promise - are based on population differences. So we can say that somebody's at greater risk based on what you see in the group data. What we don't have yet are findings that are strong enough to use for an individual subject to give him or her the best indication of what they can expect.
And we need to do that. We need to get much better, by having a more precise approach that says at the individual level - just as you would for hypertension or chest pain - this is what you can expect. You're somebody who's at such a high risk, you need an intervention.
GJELTEN: Now, General Chiarelli, obviously, progress in this field is going to depend on the work of scientists like Dr. Insel. Tell us a little bit about your organization, One Mind for Research, and what role you can play as an organization in advancing work in this area.
CHIARELLI: Well, what we're trying to do is basically institute a new kind of paradigm. We found some very, very promising research that's been supported by the NIH that we think if we had the money to scale it up and scale it up quite quickly, that could lead to some better diagnostic tools, some better patient outcomes in a much shorter time.
The problem is, as I see it today, is that we again have under-invested in this particular area. There are so claimants, because there are so many diseases of the brain. And we take the available dollars and we split them and do research in all those things, but we don't necessarily scale up some of the research to a level that's needed.
And I think there's a real need, here. Soldiers and sailors, airmen and Marines have been the ones that have put focus on traumatic brain injury and post-traumatic stress. But the fact of the matter is these are huge problems, with traumatic brain injury being one of the leading causes of death and injury in this country, according to the CDC.
So although they have focused us in this area, quite frankly, if we could start to understand these and understand their connections to other diseases of the brain - such as Parkinson's disease and Alzheimer's - this would be huge. It would be huge for all of us, not just servicemembers.
GJELTEN: Well, General Chiarelli, maybe this field needs a general to sort of crack the whip and herd some of these research communities into greater collaboration.
We're talking with General Peter Chiarelli, former vice chief of staff of the U.S. Army, now chief executive of One Mind for Research, and with Dr. Tom Insel from National Institute of Mental Health, the director there.
We're talking about what we know about the brain and what we don't know. If you or someone you know is dealing with a brain disorder or disease or injury, we'd like to hear from you. The number is 800-989-8255. The email address is firstname.lastname@example.org. And after the break, we are going to go to some callers. We have - the board is full of people with questions about brain disorders or from people who themselves are suffering from some brain disorders. I'm Tom Gjelten. This is TALK OF THE NATION, from NPR News.
(SOUNDBITE OF MUSIC)
GJELTEN: This is TALK OF THE NATION from NPR News. I'm Tom Gjelten. The human brain is a massive organ. It weighs about three pounds, and it does everything that makes us human. It makes us laugh and love, judge right from wrong, form basic thoughts. It forces us to digest our food and draw breath. But sometimes, for a variety of reasons, it malfunctions, and figuring out why is an incredible task.
Today we're talking about research on the brain, what we know and what we don't yet know, and if you or someone you know is dealing with a brain disorder, disease or injury, we want to hear from you. If you're not but have questions about what scientists have learned or are still researching, give us a call. Our number is 800-989-8255. Our email address is email@example.com. Or you can join the conversation at our website. Go to npr.org and click on TALK OF THE NATION.
I'm joined by retired General Peter Chiarelli and Dr. Tom Insel. General Chiarelli is now chief executive officer of One Mind for Research. Dr. Insel is director of the National Institute of Mental Health. But before we go back to our two guests, I want to go to the phones. Barbara(ph) is first up. She's on the line from Toledo, Ohio. Barbara, welcome to TALK OF THE NATION, thanks for the call.
BARBARA: Thank you, I appreciate the topic. I really - I think - I can't remember which speaker - hit one of the main problems, I think, with this whole area, and that is the stigma. I have an older brother who has been a warrior every day of his life, battling schizophrenia and bipolar disorder. It has been a profound drain on not only him but the rest of our family, trying to get him help, and we have found that medications come into fashion but are not necessarily helpful.
And I think that's one of the critical hurdles. Perhaps if it is targeted from the viewpoint or standpoint that it is military folks who need help, then maybe some of the stigma will go away, and...
GJELTEN: General - let's put that question right off, Barbara, to General Chiarelli, because General Chiarelli, you have had a lot to say about the issue of stigma in the past. In fact, you don't use the term post-traumatic stress disorder, PTSD. You just call it - I've noticed you just call it post-traumatic stress. Can you explain why?
CHIARELLI: Well, that's right. I believe that the use of the word disorder for a certain percentage of the population is a barrier to care. It'll stop people from going in to get the help that they need because they do not want to be told that they have a disorder, particularly the younger kids that we've got in the United States Army. I found this was a real issue, is that when you're 18 or 19 or 21 years old, you just don't want to be told that you've got a disorder.
And I think that when you understand that a majority of the research that has been done on post-traumatic stress hasn't really been done on soldiers, it's been on women who have been sexually assaulted. To say that a woman who reacts to that and has problems dealing with that, that they have a disorder, I think that that's just really a term that we need to get rid of and talk about what it really is. It's an injury that occurs.
GJELTEN: Well, Dr. Insel, I think something that you said earlier really has stuck with me, and that's that you still are relying on behavioral indicators to identify those people who have suffered some kind of brain injury or brain disorder, and as long as you're talking about behavior, as opposed to blood tests or something else, I guess you have to really deal with this problem of stigma being a barrier to diagnosis.
INSEL: We have an expression around here that science trumps stigma, because when I went to medical school, we had the same stigma for cancer and later the same stigma for HIV. And I think a lot of what we can focus on going forward is much, much better science that will help people to understand what it is we're dealing with, that these are not behavioral failings or weakness of will, but they are injuries.
And the individual's response to injury, which as General Chiarelli says, doesn't - is not served by yet another form of being victimized or labeled.
GJELTEN: And Dr. Insel, I have a question for you from Jodi(ph) in Madison, Wisconsin, who emailed us with this question: My brother was injured at age 16, and his anger, outbursts and behavioral issues seem to be getting worse as he ages. Is this common, and what are the implications long-term for this, worsening indications?
INSEL: Well, you know, one of the things that we see more and more often with the response to trauma is whatever it is that is part of the individual's particular constitution that leads to either resilience or risk for greater problems, it gets complicated often by the things they do to themselves over time, whether it's substance abuse or other kinds of behaviors that they begin to embark in.
And this is where, as you see people as the years progress, and as these problems go from being acute to chronic, it really hurts to see the sort of trajectory that could be avoided if we knew how to intervene much more effectively at an early stage. So often what we call PTSD, and the disorder name still gets assigned to this, occurs years later, sometimes decades after the original event.
And it's the result of a lot of accumulation of everything from depression to substance abuse to secondary issues, sometimes that come about, and an attempt to self-medicate - often, for instance, with alcohol - the original symptoms.
GJELTEN: And of course, General Chiarelli, our last caller, Barbara, whose brother was suffering from the anger, outbursts and behavioral issues from his brain disorder, she, as his sister, was dealing with that, and because of these behavioral implications of brain injury, a lot of the burden does fall on family members, does it not? And I'm sure this is especially acute for veterans who are returning from combat or from some warzone experience with disorders like PTS. They have to go back to families and communities.
How are they best able to deal with those soldiers returning from a warzone?
CHIARELLI: Well, that's just a huge problem, Tom, because, you know, you see your loved one get off of a plane after a deployment, and they look visually the same as they looked when they left, but you find out weeks, months or even years later that they're not the same, that they are suffering from post-traumatic stress, or the results of traumatic brain injury from some kind of an explosion or concussive event that they had.
And it affects the entire family. The key here is that when you see those kinds of symptoms appear, that you get that loved one in for help. And many times it's the entire family that needs that help, and some of the best treatments treat the entire family and help them through this entire process.
And to understand it, this isn't new. I know you know that John Huston's documentary was just released, it was done after World War II, and it was suppressed, done on behest of the Army. When people high in the Army saw that this is something that would maybe look down upon the great service of service members in World War II, the decision was made to not show this documentary, and it's just been released now and shows that the problem was just as great in World War II as we're seeing with our returning veterans from these two conflicts.
GJELTEN: Of course in these conflicts...
INSEL: If I can add there...
GJELTEN: Yes, please, Dr. Insel.
INSEL: You know, people may not realize this, but the agency that I work for, the National Institute of Mental Health, is the world's largest funder of research on mental disorders and mental health issues. We were actually founded in 1948 for one purpose only, and it was Harry Truman charged this agency to address the problems of returning veterans from World War II because of what was then called either combat neurosis or combat stress, which is today what we call either PTSD or PTS.
This is not a new problem and it's one that we have looked at in many ways now for over six decades, and we're still struggling to come up with the best approach.
GJELTEN: We used to call soldiers coming out of warzones as shell-shocked in some cases. That was a term that predated...
INSEL: You know, there sure was, and there are very good descriptions of this going back certainly to the Civil War and even before that. So this is - there's nothing new here in the sense of the syndrome that we're dealing with, but in a way that's part of the sadness of this, is that we haven't made the kind of progress that we've made in so many other areas of medicine since 1948.
GJELTEN: Well, General Chiarelli...
CHIARELLI: That is really the sad part of this, is we really haven't come any further, and until we start to share information, until we team science this in a way that's different than what we've been doing for the last 40 or 50 years, we're not going to find a way to help these individuals more than we helped those that returned from World War II, the Korean War, the Vietnam War.
It's time to stop this and figure out a way - this is emergency science that is needed to try to get at this as quickly as we possibly can.
GJELTEN: Well, one thing that is new, Gen. Chiarelli, is that these past wars have featured the use of improvised explosive devices, IEDs or roadside bombs, and those have really had tremendous implications for brain injury, haven't they?
CHIARELLI: They have. But there's always a tendency to say it was the explosion that occurred downrange that caused the problem. What we're finding in some other studies that were doing the Army was that we had a large number of our soldiers who entered the Army with a number of concussions. So the concussion that they received in Iraq or Afghanistan was only added to a list of concussions that they had received participating in high-impact sports such as football or in girls' soccer, quite frankly, which is - the leading cause of concussion in this country is girls' soccer in high schools.
GJELTEN: Yeah. And the issue of concussions in sports is one like it is in the military that's getting a lot more attention these days. Let's go now to Jolie(ph) who's on the phone from Detroit, Michigan. Good afternoon, Jolie. Thanks for calling TALK OF THE NATION. You're on the air.
JOLIE: Hi. I have narcolepsy and a history of severe trauma, and I was wondering if, you know, a brain that has, you know, I'm being medicated for one issue - I've just read in "In an Instant," Bob Woodruff's book, that some of the extreme traumas if repeated will make it more likely that a person will to have PST - PTS after another injury or exposure to violence or something bad. Where is that going? Do I - should I feel at risk?
GJELTEN: Let's put that question to Dr. Insel. Jolie is wondering whether one brain injury makes you more susceptible to subsequent injuries.
INSEL: Well, it depends, Jolie, on the kind of injury. I don't know of any evidence that narcolepsy is an onramp to developing post-traumatic problems. On the other hand, the evidence that's accumulating is that any kind of brain injury such as traumatic brain injury, any structural injury from concussive events may put you at a higher risk, and that's something that we're still trying to understand much more about. But narcolepsy itself or the medications that one would take for narcolepsy, I don't know any evidence that that, in and of itself, would be a risk factor.
JOLIE: OK. Would you like me to be a subject? How could I go about that?
INSEL: Well, there's a lot of research. You may want to look at a website called clinicaltrials.gov, which will enlist all of the studies that are underway currently; the treatments trials for either PTSD, narcolepsy or for related problems.
JOLIE: Terrific. Thank you.
GJELTEN: Thank you, Jolie. Thanks for calling. And that is Dr. Tom Insel. He's director of the National Institute of Mental Health. We're also joined by Gen. Peter Chiarelli. He's a retired United States Army general, a former vice chief of staff of the U.S. Army. He's now chief executive officer of One Mind for Research. And you are listening to TALK OF THE NATION from NPR News. And you can join us in what remains in this segment by calling 1-800-989-8255 or emailing us at firstname.lastname@example.org. I want to go now to Rebecca who's on the phone from Park City, Utah. Good afternoon, Rebecca.
REBECCA: Good afternoon. Yes, my question is: my father, who was an officer in the Second World War, is suffering from Parkinson's. And I happen to have a cousin who is in - is a neurosurgeon, actually, and in asking him what the upcoming possible intervention for - besides medication for - I mean, of any sort for Parkinson's - he said he holds out the greatest hope in the stem cell research area. And I'm wondering if you could tell me if we are making any progress there. He did say the other countries outside this - the United States are hitting this very hard. I know Korea and some places in Europe, but what is the status of that in this country?
GJELTEN: Thank you very much, Rebecca. Dr. Insel?
INSEL: Well, there's a lot going on in this country in stem cell research, especially with respect to Parkinson's. The kind of stem cells that are getting the most play in the U.S. these days are not the embryonic stem cells that you may have read about that have been such a political football, but these new kinds of stem cells called induced pluripotent stem cells. Long name but, basically, it's just the way of talking about stem cells that would come from your father himself - not from any embryo - where you can take his skin cells and cause them to change into a form of stem cell that could then be the - be re-engineered to be able to produce dopamine, which is missing in the Parkinson's brain.
Lots of interest in doing this right now. It is not yet more than an experimental procedure. One thing you may want to think about, because it is further along than experimental procedure for someone with Parkinson's, is deep brain stimulation, which has done a lot to help people who have not fully responded to medication. So there are lots of options, but stem cells right now are still more aspirational than actually in the clinic.
GJELTEN: Very quickly, Dr. Insel, in the few seconds that remain in this segment, what are you most excited about right now in terms of research that's going on in progress that is being made in this area?
INSEL: Well, for this area, I think that, you know, that the main focus has to be in the early detection or prediction of, who do we need to focus on? So that to the extent that we can prevent the development of PTSD, we're going to make a lot more mileage than trying to treat the disorder once it develops. There are treatments of great interest. Those include both behavioral treatments and medications and most of all their combination. But I'd say it's something that Gen. Chiarelli has stressed a couple times that needs to be very seriously emphasized is that it isn't just what we do, but how we do it. In science today, we are at a moment in time when we need to be rethinking how we do the research and that we find ways to crowdsource, to share data, to turn this into a team effort and not into a competitive lab A against lab B effort. And I think that's what's going to give us the most bang for the buck over the next few years.
GJELTEN: Dr. Tom Insel is director of the National Institute of Mental Health. He joined us from his office in Bethesda, Maryland. And his closing comment there for Gen. Peter Chiarelli was basically to give you, sir, a sort of an agenda for your organization's work. Gen. Chiarelli is a retired U.S. Army general and chief executive officer of One Mind for Research. He joined us from member station KUOW in Seattle. Thank you both very much. And this is TALK OF THE NATION. I'm Tom Gjelten. Transcript provided by NPR, Copyright NPR.