Jon Grant's Lecture on BFRBs research at TLC conference 2014
Filmed at the Trichotillomania Learning Center Annual Conference, April 2014 Featuring Jon Grant, JD, MD, MPH Chair, TLC Scientific Advisory Board
Where are we in terms of treatment and understanding of Body-Focused Repetitive Behaviors (BFRBs, or behaviors like trichotillomania, skin picking, nail biting, etc.), where do we need to go and how will we get there? TLC Scientific Advisory Board Chair, Dr. Jon Grant provides an overview of BFRB research to date and the implications for treatment and recovery moving forward.
We took the liberty to transcribe this fascinating lecture:
"So, this is a very exciting year I think for TLC, and you probably have already seen these buttons, right, that some people are wearing that say BPM, and asked about it. So you’re gonna see more of these, and, and so, what’s happening this year is, TLC is launching a much sort of bigger, I think much more impressive research agenda for the forthcoming years.
And, this is very exciting, I think the world of treatment and understanding of hair pulling and skin picking is at a great juncture now and this can happen. But I thought, you know, it would be interesting to also see as we move forward, sometimes it’s also important to figure out where you’ve come from. And to understand what’s happened in history, because every change that we make and everything that we do to try to understand and treat these behaviours is sort of incrementally built on something that’s happened before it.
And so for those of you who have any interest in sort of history there’s a whole range of …there’s a new book out… I blank on the author… about the history of skin! And it discusses picking throughout time, and then there’s something called the encyclopaedia of hair! And so, anyway, there’s a wealth of history about these behaviours, and I’m going to present some of that and highlight some of the accomplishments. And also though, why based on what we’ve done until now although impressive for a small organization, and a small number of people around the world; that we can sort of see where we need to go, and what the next step is going to be. So, I’m hoping it will also get people excited about where the field is moving. So, I’m gonna talk about the history of the research in both trichotillomania as well as skin picking, and as anyone with skin picking knows, it’s gonna be a little bit shorter history. In that world there’s a little bit less of, so, the lion’s share will be about hair pulling, but it’s simply because that’s the state of the world. It’s not that I’m choosing to talk more about the hair pulling, it’s just that there is more to talk about. And then what’s going on currently and where we would like to see things move. So I think this is a very exciting time, as I mentioned.
So,the history…Everybody by now has heard of François Hallopeau, the French dermatologist, and he was the person who came up with the term trichotillomania for, you know sort of this, hair pulling frenzy. And he had seen this in a case of a young man- and you know this raises the issue of sometimes gender in these behaviours -in the case of a young man, who he had described as having pulled almost every hair out of his body. And this was really the first major scientific report about trichotillomania.
So now what’s interesting about this, so he presents this case, right? So here he is in 1893, and then essentially for 80 years, we get really nothin’, for the most part… or very little. There were 33 articles written in scientific journals around the world at that point! But, I have to say, I like some of these articles very much… I’ll just highlight some of them. But there was a case in the 1920’s,again, of a young fellow, who had been pulling his hair. Now what was interesting, this tells you how science is important, because at that time they had said that, he had other tics, and other behaviours such as nail biting. And there was a question of whether hair pulling and skin picking at that time were connected with sexual perversions (raises his eyebrows at the audience, indicating the questionability of these claims, audience giggles). So right?! A little education goes a long way, right? To educate people out of these things…but, they also did go in for treatment, and they just simply cut his hair really short to stop him from pulling (pauses, audience giggles).
This is a case, a little girl, 8 years old from the 1920’s again, who had been pulling out her hair…and again the same…and again what people would do in these articles…people would write the case, and then other people, all these doctors from around the world would write in their little comments. You know, so it was about the, you know I guess it was as close to a blog as you know as one would have in the 1920’s. And they were again trying to understand as a personality feature, was it associated with hysteria at that time? And they recognized very early on that hair pulling and nail biting were linked. And this doctor I like mentioned that he felt that it was something like smoking…the sort of habit that people can’t stop on their own, that has almost a kind of an addictive quality to it. And then the president of this medical society, had written in, again about keeping the hair really short, and that would be the treatment. And what I did appreciate from these early reports, and this is always a big topic of debate in mental health…these people simply said they cured it (pauses, audience laughs).
Which I love, you know what I mean? And I think you know that in mental health we end up talking so much about how to manage things…you know, that, perhaps we set our sights too low? I mean, maybe the goal should really be cure, you know, and by using these terms we sort of set our goals higher. So, that’s why I highlighted the word cure here (refers to slides).
Now, we move again 40 years ahead… And with it, is the first case of behaviour therapy that was used in 1963. And this was really, simply the idea of thought stopping, and telling her hands, “stay where you are” every time she noticed that she was pulling, and they found it effective. So, it’s not as if people haven’t been looking…you see bits and pieces through time…even through the sixties. So now we move into the seventies…Now it’s in the seventies things started changing. There were more scientific reports in those 10 years than existed in the 100 years previous to that. And what’s the importance of scientific reports? It says that people are paying attention to the problem, it says that you’re trying to understand it, that you’re trying to treat it. And this is when habit reversal came on the scene…in 1973…with the first cases of 12 clients being treated with habit reversal for trichotillomania and a variety of other habits. This was also the first time hypnosis was used…which, in the seventies was used for lots of things, but it also showed again trichotillomania had earned enough of an interest from the scientific community that people were employing new therapies for the treatment of this problem.
And this is when we started also talking about: what is the illness? And so people…part of what we have to know…and you’ll be hearing a lot about this, is when we try to understand a disorder or a behaviour, and understand how it’s complex…how this person –their trichotillomania is different from this person. It starts with collecting a lot of information from a lot of people, so that you start understanding…well when does this start? You know, when, how, what triggers it, all of these things. And so you need a certain number of people. And this was from the Mayo Clinic in the 1970’s…and they reported 24 cases…and they actually found that over half of their cases were males. Now I highlight this because the gender issue with these behaviours, is still a little bit, I would argue, unknown. You know, we tend to think… always talk about these as more female…but we don’t have large scale studies to actually tell us whether that’s true or not. And a lot of the early science was really looking… again they had a lot more men coming for treatment apparently, than perhaps we do even today. But they found too, at the Mayo Clinic, I thought was sort of wonderfully sort of arrogant about it- in a very good way- they said the treatment was simple and effective…they could treat it. So if you were in 19…you are struggling today, but if you were in 1972 you had a better chance, I guess is the idea…(audience laughs)…or they were just selective in terms of how they presented it. But they were concerned that other habits took the place of hair pulling, and again, this is something we know today, which is that many folks that have hair pulling might have some skin picking, may have some nail biting etc. And when one gets better it’s kind of like one gets better, the other gets worse.
Now the world of picking is a little bit different, because in the seventies, although hair pulling was taking off, as a focus there were only 3 little reports of skin picking. And those were actually done by dermatologists. Are there dermatologists in the room? Nope…see apparently they did their job and then they were done (audience laughs). So…we don’t have a lot of dermatologists interested today, but they did then and they were actually the first to report that among their patients this was a pretty common problem. And so we knew this as early as the 1970’s, although research in this area has lagged behind. So in the seventies, what we started to learn was: what these behaviours were, who they affected, the ages, the gender, these types of things…and maybe some glimmer of treatment. That was through the seventies. Yes, you’re thinking “oh there’s a lot of years to get through”… don’t stress about it’s still a good journey (audience giggles). So, the 1980’s…(audience laughs at the hairdo picture)… don’t you love it? You know, it is fascinating if you think about it though, particularly on the side of hair…hair really defines whole generations…you know, I mean you can’t help but see Michael Bolton and know instantly you’re in the 1980’s right? I mean it says something about the power of hair, culturally as well as personally…but this was the 1980’s, we had the first report of any medication being used to treat tricholtillomania. An old anti-depressant amitriptyline was used in one person and it was reported, and at the National Institute of Health, Susan Swede and Julie Rapaport and other folks did the very first treatment study using a medication for trichotillomania, which was in the New England Journal of Medicine. It was a big new announcement, because this was the first time that anybody had actually successfully treated trichotillomania with medication, and they used an old medication, which used for obsessive compulsive disorder called clomipramine, and showed that it was beneficial.
So the eighties…and there were more reports, which were looking good, you know, but skin picking still languishing a bit. So you know, only 3 reports for the 10 years, but it became international, I would point out, so people around the world were starting to look at picking, although not looking very hard I would argue. And so from the eighties, we started to get a little bit an idea of what skin picking was, it was a little bit under the radar, and maybe again from a medication stand point what might help. So, now we move to the 1990’s…now you see, the number of scientific reports ballooning. People are really getting interested in trichotillomania. We have Jennifer Aniston and the lovely 30-year olds who played 16-year olds on Beverly Hills 90210 (referring to the hairdo reference of the 90’s –audience laughs). Now what you see is a huge amount of research being done. And this really is where we’re setting the stage for current knowledge of things. So Gary Christianson, started with the largest report of folks, and I still think one of the finest research reports in trichotillomania. Folks started looking at the brain scans of people who had trichotillomania. Folks started to look at the family of folks who had trichotillomania and what their family members are also struggling with. Children were being treated for the first time, in scientific fashion, with collecting data and research. People started looking at the cerebral spinal fluid where you get spinal taps to see what sort of chemicals are bathing the brain… not a pleasant experience! Having been, oddly enough, a healthy “control” for a cerebral spinal fluid study… where I had spinal taps, nine of them in 3 days…I wouldn’t recommend it to people. It you know, it paid the rent (audience laughs). So we started looking at biological markers to see what’s going on in the brains of people. And these scales were created so that we started speaking the same language. So if we say that somebody in California is getting better in a research report, we’re using the same report in New York, so that when we compare things we start using a common knowledge of improvement to see how people do in different types of treatments. The first prevalence study - the 1990’s get a couple of pages. The first prevalence study by Barbara Rothbaum, the first gender study by Gary Christiansen again. They looked at pain receptors in folks with trichotillomania to see if people with trichotillomania register pain differently from people who don’t have, and by the way, folks don’t…but that was a big question…oh do folks pull because it doesn’t hurt them whereas somebody else doesn’t pull because it hurts? It doesn’t seem to be the case. Folks started looking at psychological profiles of people with trichotillomania, and then different brain scan studies, even looking at immune markers…could this be as in the case of OCD example where infectious causes are the root element behind the hair pulling. So somebody gets say a strep throat, this has been the case of some cases of OCD, they develop a strep throat and as they fight the infection it sets off an autoimmune response so then they develop OCD…could this be the case for trichotillomania? So people started looking at a wide range of these things, again to really hone in on, it’s not you know, not only to treat, but how to, sort of, what causes it, and if we understand the cause… how can we prevent it from even developing in people? So, you see the nineties were a good time…even picking started doing more research. Understanding is it different from OCD and the very first drug study looking at Prozac or fluoxetine was done in the treatment of skin picking. So, summary of the nineties, we’re starting to do more, people started to get excited, we actually know more,we have more clinical data, we know what’s going on, at least some glimmers of what’s going on in the brain. We start recognizing we can do something for kids as well and again, picking is still a little bit lacking, but it’s making strides. Now when it comes to the 2000’s…a lot more being done. And now we have comparison studies. Medication: is medication better than therapy? We have the first glimmers too of what we need to do, which is to subtype people. Meaning we need to be able to look at say 10 people with trichotillomania and finally recognize that there isn’t one illness here, that maybe there’s 10 different things going on in 10 different people and to really understand those sort of subtyping complexities. And that then leads us to start thinking maybe in treatment, maybe one size isn’t gonna fit all…that some people can get better with x and some people can get better with y. People started looking at inositol for the first time, which is vitamin B complex. Again, some more immune studies…and we started getting the first gene studies…so this HOXB8 gene, which is a gene that is associated with our immune function, and what goes on in the bone marrow was examined. We started doing animal research, animals starting to look just like… behaviours starting to look very similar to folks sort of picking and pulling… so mice would chew off their fur repetitively under certain stress conditions etc.
Again, so lots of changes throughout the 2000’s…Cognitive studies out of England…TLC launched the “Tips project” which was really collecting information, and many people probably took part in this - online information with thousands of folks with trichotillomania to really get samples that approach what other illnesses have. You know, so when it comes to hair pulling and skin picking, you will see throughout the conference, people will talk about, “Oh you know we did this study, it was 20 people”, and then you’ll see on CNN tonight there’s a blood pressure study going on and it was 80,000 people!…You know, and you think “hmm we had 20…that’s pretty good right?”(audience laughs) So we started recognizing we needed bigger samples so “Tips” was part it. Some other gene studies that were going on, so people were looking at a chemical called glutamate and the genes that make that. People looked at different genes that help our general structure of the nerve cells, and whether those are relevant to folks that are picking or pulling. And then Carol Novak’s twins study, and then we did our N-Acetyl Cysteine study. And then also, skin picking starts taking off. We had the first cases of CBT for skin picking in 2002…and habit reversal in 2006, the stoppicking.com website is analysed and launched, and people can get online therapy through using different modules of CBT through a website. We also had the first gamma knife surgery, brain surgery, for refractory skin picking in a case in Pittsburgh, with a gentleman who picked and picked to the point he had so much blood loss that it was either brain surgery or death. And so they did that successfully in Pittsburgh. And it also suggests I think in a very serious way, that when any type of illness gets very serious we need a range of options in terms of treatment, so that we can have things for people who have sort of mild cases, but we can also have options for people who have more severe problems with their illness…And then [we had] more genetic studies etc. So this was a good time!
Now we move to 2010…so in the last few years, a whole range of things going on, we finally looking at people of colour in terms of the analysis of folks with trichotillomania. People are starting new types of therapies, something called decoupling, which is a therapy which is based somewhat in CBT but has its own unique qualities. So, it’s branching sort of beyond our typical therapies to recognize we need more, we need different in terms of who we’re looking at. And then even a medication study that looked at the N-Acetyl Cysteine in kids. And DSM-5 changed several things, with trichotillomania being changed- its name and the inclusion of skin picking. And then skin picking, a range of also new findings, cognitive findings, prevalence studies, controlled CBT studies…now people are thinking, well then why aren’t they launching anything, well we’ll get to that…but you know this is great ground work. The samples unfortunately are still small, as you notice bits and pieces of things… and first imaging studies as well.
So again, what do we have currently, we have a lot of clinical information…and folks who struggle know this…you can go and see somebody and they can tell you a lot about it, they can tell you about trich and picking, but, how yours may different from other people’s we don’t still know in a very substantive way. They offer treatment options that are sort of what’s been helpful. Can they tell you in particular, this is the kind of thing that’s gonna help you? Can they target that and say 90% of people with your qualities will be improved by this? We just don’t know yet. So we know a lot, we’re moving in the right direction, but we still have a ways to go. I highlight this, just to show that from a scientific standpoint this is why TLC is launching this new initiative…we need more research, and, this is sort of the old chest out…but you know we need bigger research, meaning we need more people and we need more detailed scientific research that’s done across sites. So if you look, these are the number of articles per year on trichotillomania…so currently there are about 45 articles a year from researchers around the world. There are almost 5400 articles per year for schizophrenia. And there are 17000 articles per year for depression. And trichotillomania has 45. Okay so that is pretty good, because it’s better than 1970, right, where there were 4! But you can see my point…we’re not there yet. And so I think, it not that it’s gotta be more, it’s gotta be better, more targeted obviously. But it does speak to the fact that other areas of mental health, when we know people who struggle say with depression, and we can sort of say “wow you’ve got lots of options! You know you go to your doctor, you go to your psychologists, if something doesn’t work they’ve got option A through Z” and when it comes to trichotillomania you got sometimes option A, maybe option A.3…you know? But we don’t have sort of this wealth of options necessarily, and on the picking, it’s quite frankly worse…and again…25 articles per year. It’s moving, but it’s still not good. And so I don’t say that as an excuse, but I wanted to highlight the history to show that amazing advancements have been done. But I think when people want - and everybody wants help - and they want help quickly and they want help effectively, and that’s great…and so what you often find at these conferences, people say “what about about…what about…” And the answer often is “we don’t know…we don’t know…” We do know a lot, though just ask those questions (audience laughs). So, it’s really incumbent upon you to ask the questions that we know the answers to (audience laughs). Because otherwise it highlights all these other things that we don’t yet know… So overall, the state of knowledge is that we know a lot about theses presentations, we have ways to measure improvement by using these scales, when you go to your clinician and they ask you the same questions over and over again, it’s usually from a scale…and again, this is to try to track improvement in an objective fashion and we’ve got good scales to do that for both picking and pulling. We understand how picking and pulling have a lot of co-occurring problems. We understand a lot of these things, and we have glimmers of promising treatments. We can help people… that’s the great news. The flip side though is that we need better treatments and we need more targeted treatments. And we need a lot more information on diversity in populations. So the initiative is trying to fill these gaps, trying to find out what our deficiencies are in our knowledge as we move forward. The current state, where we are right now…we have this brand new hair pulling disorder in DSM-V, it’s not new, but it’s newly renamed, with new criteria and for folks with skin picking as of May last year , it is finally an official mental health classification disorder, and so people, one would hope, can get appropriate treatment through insurance etc.
So this is where we are at, and we have ongoing research at NIMH [National Institute of Mental Health] over the years has funded two studies in the recent memory for psychotherapy, we have an ongoing TLC genetic study, there’s a range of psychotherapy studies at various universities – University of South Florida, University of Wisconsin, and American University, and then some ongoing medication studies that we’re doing in Chicago. So what does this all mean? We have a lot of information, we have a long history of medication, so where does this all take us? So this is where the idea that TLC has come up with, that this has been wonderful but we need to think bigger if we want to offer more treatment and understand the disorder and its complexities on an individual level of how we can tailor treatment, so that it’s not like “Okay come on in, we gonna do the same thing for everybody…oh it didn’t work for you? Oh okay, bye…” you know? So this is really to get enough information on people so we can target treatments in a very logical, objective manner. And so, right now, what we have is, expressed behaviour. This is where the status of our knowledge largely is. And what is expressed behaviour? It’s sort of what would be called in scientific terms a behavioural phenotype which means “what one does”, so we pick too much or we pull too much that’s what we know. But what we wanna do is get layers below that. We wanna understand the brain, we wanna move toward etiology which is called cause…what causes the illness. That’s where we wanna get. So we’re way up there with limited treatments, trying to kind of tunnel our war through, to more substantive, underlying things, that will tell us on an individual level…why, you know, Suzie pulls but hasn’t responded to treatment, but Janie has responded to treatment and pulls. So it’s the same problem but why does some people get better but others do not. So this is the kind of goal, to get core things of what’s going on in the brain, the cognitive piece-how we think through problems, how we think about our behaviour, all of these things to really get at core issues. We’re trying to answer some fundamental questions – is everyone the same, with trichotillomania and skin picking? Well we know that’s not the case. But what are the meaningful differences? And what are the meaningful differences between the two behaviours? You know, how does skin picking differ from trichotillomania, and on the individual level. What’s going on in the brain? And is what we see when we take brain pictures currently, is it cause or effect? I mean, we have not yet been able to figure out, when we see things going on in the brain, is that what the brain looked like before the picking and pulling, or, if you pick and you pull every day, will you modify your brain to make it look like some of the things that you’ll see during the conference, in terms of those pictures. So we really do need to see what happens first as a way to develop early preventions etc; and interventions. And then understanding genetically what’s going on, what genes are turned on, turned off, and how do they differ across people. And then using all of that to turn it into a treatment approach, because this research is meaningless unless people benefit from it right? I mean I can take brain pictures all day of any number of things and then just go home and watch television, that’s kind of silly, so it’s only useful if we can actually make people’s lives better. So this is really why we want this information – to craft it in a way to improve people’s lives.
So this then led to TLC working on a bigger project moving forward. And for a small organization to move for a big project, this is really a big deal! And so the BFRB (body focussed repetitive behaviour), we wanted it to be inclusive and developing what we call precision medicine. And precision is medicine really targeted to the individual, and to understand on the individual level what we need to know so that the person who comes in for example Suzie Johnson, who pulls, but her disorder’s not being treated…she is being treated, if that makes sense. And that’s the precision element. So you know we don’t treat disorders…we shouldn’t be treating disorders, we treat people. So this was the idea of TLC, to put together a project moving forward that could be big in terms of really making in-roads, because you know after 130 years of that wonderful history, we would like to see a bit more advancement. And we’re setting goals pretty high, and I think they are achievable. So the idea is, we would really like to see folks who have picking, pulling and other body focussed repetitive behaviours in the next 5 to 7 year be able to increase remission rates from what would now be maybe 10-20% of people who ‘remit’ - you know meaning who stop the behaviour for the sort of long haul - and we would like to increase that to maybe about 70%. This is in-line with some other health initiatives that really are not tolerant of people just going along in a sort of half okay way. I mean the target is really…to get people better! And to do that we really do need all these little bits and pieces…I know you’re thinking “but you told us there were brain scans, and somebody had a spinal tap…”, right? These gave us little bits and pieces of information, but we’re building on that to really launch sort of a full focus on what’s going on biologically in terms of the brain in folks who have trich and picking. And so to really understand that, and by really understanding that on a molecular level, I mean even the molecules in the brain that do this! This gives us new targeted options for psychotherapy as well as pharmacological treatments, as well as all natural treatments. You know sort of the inositol and N-Acetyl Cysteine route too. So by understanding on the minutest level of what goes on in the brain, this is sort of the target for treatment improvement. And what we have, which is unlike any other mental health thing that I’ve ever heard about, or problem, the TLC is a small world, and it’s a small collaborative world, really across the entire country, so people know what everyone else is doing. And this affords us the opportunity to work together from coast to coast to really use what everybody knows and does best to move the field forward as opposed to “oh there’s a little study going on in Phoenix” or “there’s a little study over here doing this” and then you know, if somebody takes the time to read all these studies and piece it all together, and that takes a really long time and people don’t really take the time to read all these studies as I have learned over the years.
So there’s this collaboration that we can provide that no other field of medicine can because of the TLC and because everybody in the field of trich and picking research really knows each other and is part of this community. And the goal again is to really focus on the science and to really focus on what’s going on in the brain. And by the brain I’m not talking about environmental pieces that also is a big piece-developmental, environmental - it is ultimately processed through the brain, but those are all incredibly important variables. So I don’t wanna just say brain as though that means just some floating head or something…
And what the goal of this is, because as you see the lack of scientific reports and even the lack of research support from federal and larger institutions, the goal of the BPM [BFRB precision medicine] was to leverage private investment money from donors to really start putting this on the path, with the idea that, as we make in-roads then we can work more collaboratively with the National Institute of Mental Health, and even larger corporations to take what we learned to the development of future things. So we need more science from the private sector. You know, people read the article in the New York Times recently about the field of science, because of dwindling federal funds, is really relying on private investors. So TLC thought why shouldn’t we look to private investment? You know, because this is really the place where we are going to find the research dollars. And so what’s the goal with that investment, is to really understand what I call phenotype – these kind of terms nobody uses in the real world- but what it means is all of the ways that the behaviour or disorder shows up and is exhibited. So, is it automatic pulling versus very focussed pulling, is it stress-induced pulling versus etc… So [to] understand that complexity of clinical presentation from hundreds of folks across the country as opposed to twenty folks, to really start getting at that. To understand not just the behaviour – I pull too much- okay yes that’s a piece of it, but what goes on, on a thought process? Is that because I can’t stop pulling? So is it a problem of being able to inhibit my behaviour? Is it that enjoy pulling, and I’ve made an assessment that my joy wins out over the consequences? And these are different for every individual, but it’s very important to understand that also from a therapy standpoint to develop therapies to understand how those differ across people, because the driving forces and the motivations often differ. And again, this is the individualized, the precision quality of this. And then, actually to do brain imaging work as well. It’s one of the tools that really allows us to understand not only what the brain looks like, but actually see how it functions in real time so to speak. When people sit in scanners and they do things, and they do certain tasks, and you can actually see what parts of the brain sort of turn on, and which parts of the brain turn off. And that allows us to understand, and we hope, and the goal of this, is to know how that then fuels the picking and pulling behaviour , if that makes sense. And so again, to do this to not just 10 or 12 people, which has been the standard, but to do this in hundreds of people to really understand this in the big picture, not just on the micro level. And then as I said before, to use all of that information to really say okay, you know, how do we put this all into a puzzle. And so the goal would be ultimately…wouldn’t it be wonderful if you know somebody could come in…you know I would love to see somebody come into my office, and I’d chat to the person about their pulling, and I’d say, “you know what, we gonna take a walk down the hall, we gonna take a picture of your brain, and, we gonna do a little blood on you to see what’s going on genetically”, and we can feed it into an algorithm based on what we’ve learned from this project and then you can say to the person, “in your case, if we do x, y, and z, you’ve got a 90% chance of stopping pulling. But if we did a, b, and c, it’s not gonna help you at all”. So, that would be the ultimate goal…how we use that information when we look to the person sitting in front of us and say, this is the approach we’re gonna take, and it’s based on scientific information. What we have now is, and you know, most clinicians, gotta love them, it’s a tough chore, would say, you know, “maybe based on what you told me, maybe…” You know and it’s the precision, that is what we want to hone in, so that the person doesn’t feel , “oh great, they’ve tried 12 things and nothings worked, and now we’re moving on to…!” Or like one of my patients, I said to her the other day, okay, we’re moving on to plan B”, and she’s like, “no…actually it’s more like plan H!”And I realised, oh yes right because you live with this every day, so you know how many things we’ve tried that hasn’t worked…and it’s frustrating! And I can be all cheerleader about this, but we know that after you’ve tried things over and over again and they don’t work, what do most people do? They give up and think I’ll just live with it…and that’s unfortunate. So, this is the approach of this [project], and this is a nationwide collaboration as I said. So, there are all these centres around the United States that are committed to understanding and treating hair pulling and skin picking, and that’s the goal. Because this collaborative effort, you know, we don’t have to just see the folks sitting in front of us, it’s really using the information that everybody is gathering in a systematic, organized fashion to move everything forward in the field of medicine. And so, we’re very confident that this is the best way to move the field forward to get the best options, because otherwise in a few years from now we might be saying, “oh you know, between 2020 and 2030, we had another few cases, and we had another few cases”, and you know that’s great, but we need more information and it needs to be more useful in a timely fashion. So, that was the history of things, and where we’re headed with the BPM initiative…questions?
With this new BPM initiative, what are some of the obstacles to your goal? And are people in higher academic circles accepting the scientific legitimacy of trichotillomania and skin picking?
I don’t think legitimacy is an obstacle because of DSM-V including skin picking, so I think that shows an awareness from massive amounts of mental health professionals that this is real. Because let me tell you, there are lots and lots of things that people tried to get onto the DSM-V, that did not! So the fact that skin picking made it on speaks very well, not only to the people who did research on it, and God love all of them for providing all of that information, but I think it was persuasive, that people said yes this is real…there’s a history to it, you know, this wasn’t created in 2010 because people were bored and said oh let’s just make up something. So I think people recognized that. I think that the one obstacle, and it’s not the people, because I think people with trich and picking have been very excited about taking part in research, they’re very altruistic in the sense that they know that what we learn from every individual helps somebody else...which I think is beautiful. I think that part of the problem with dwindling dollars on any kind of big federal level is you start getting into what one calls “serious mental health problems” as taking priority, and the reality is that a lot of folks with trich and picking, although struggling, often much more internally, people are not as aware of say people with schizophrenia who are living in a group home, who can’t function. And so you know the high function quality of folks with picking and trich, has sort of made it I think fall off the radar in terms of this “serious mental illness” and so when it comes time to dividing up the dollars, and you know, the Feds say well you know we’ve got money that can go to schizophrenia (on one hand) and crystal meth addiction (on the other hand), and then you know trich and picking not so much… I think it’s good that they’ve done some is good, but I think that is more of the obstacle, is to let people know that people struggling isn’t a comparative thing necessarily. You know we don’t have to think; oh you don’t struggle as much as somebody else, and also we have a lot of high functioning people whose quality of life is definitely hampered, and why isn’t quality of life also on the priority as functioning. These are the sort of cultural debates going on about where should money go. I think that’s been the bigger hurdle, which is why this goal has been to leverage private funds.
In terms of the pharmacological studies you mentioned, in my experience, while these medications do help with the associated anxiety or mood disorders, it doesn’t seem to treat the underlying trichitillomania or skin picking, so where are we in terms of pharmacological studies?
I will answer that in general terms, in more specific terms, I will be giving a talk later on the specific pharmacological studies and how good they were, so I will defer my answer on specific medications to this afternoon. In the big picture though I think the pharmacological treatment arm, much like anything else, you know you have to know what you’re treating, right? And so you need biological basis to know why you give what you give. I think that given the little bits of data that we have, some of the options have made sense at least in theory. The goal of the BPM is that by collecting enough information on hundreds of people that you really are beginning to target a clear biology that seems to be sort of either the most common, or this one’s pretty common you know so you know what you’re targeting, you know, as opposed to just taking a pill and trying to use it. So the goal of the BPM is, that we will have better medication options, with better information about the brain. And until we do, there’s always a little bit of shooting in the dark so to speak. You know, quite frankly like there sometimes is with even the behaviour therapies.
If we live in Southern California or really any part of the United States and we want to be part of the research, how do we help or become part of the research?
Right now research options are available through the trich.org website for current ongoing research ideas, and those then direct people wherever in the country research is going on, that’s the one piece. The research that’s part of the BPM initiative has not started yet, the goal at this point is really fundraising so that we can get the funds to launch the research. But, one doesn’t have to wait for this because there are a fair amount of research that’s being done across the country that people can participate in if they have the time and interest. And I know that the investigators at these places are always appreciative if somebody is interested.
In terms of medications used to treat mood disorders that sometimes trigger hair pulling or skin picking, is there a list of medications that that don’t have an adverse reaction that we could give doctors, you know who are not educated?
There are a range of research studies already on medications and if you are able to come to the session I’m doing this afternoon I think that will be the best place to get the information. If you’re not able to, the trich.org website does have some information that we’ve written up for them about medications, what’s been used, what doesn’t work and things like that. "