Clinical Education Initiative [email protected]

TRANSGENDER MEDICINE FOR ADOLESCENTS AND YOUNG ADULTS Speaker: Katherine Blumoff Greenberg, MD

5/24/2017

Transgender Medicine for Adolescents and Young Adults [video transcript]

00:00:07

- Yes, So I already introduced myself as I said, I'm the director of our Gender Health Services Clinic. Here we see people from puberty through age 25, but I find myself in a consultative role for people of lots of ages. And we have, at this point, between 800 and 1,000 probably, patients and families that we've seen in the last five years.

00:00:28

I have nothing to disclose.

00:00:29

And the learning objectives are really broad. I will try to get through as much of this as I can within the time that we have, but I also hope to be really useful. I know that these are areas where people often have a lot of questions. Some case examples, if these things have come up in your practice, I'm really happy to be a resource, in addition to sort of plowing through the slide tech that I prepared, so please let me know how I can be helpful to the folks out there in the audience. We're gonna talk a lot about psychosocial comorbidities. We're not gonna talk that much about STDs, although I want to say, I think it's in here somewhere that trans women of color are at just astronomic HIV risk, sort of globally, so it's definitely one of the things we think about really prominently in trans medicine. Talk about medical treatment and do some definitions, because I think it's important that people understand the process through which we work, and then what we do. And then to talk, because a lot of people in upstate New York about the resources here, but also again, to make myself a resource for referrals, for finding local services if folks are in need.

00:01:39

I'm wondering if this picture looks familiar to anyone, if you have a way of chatting in. This is a young woman named Leelah Alcorn, who in 2015, a couple days after Christmas, stepped in front of a Mack Truck on a local highway, and killed herself, and left a suicide note on , I believe, one of those Internet platforms that kids use. I don't really know what it is. And included the line, "Fix Society. Please." And the suicide note went viral. And she was in a very small conservative town with conservative family who sent her to reparative therapy. And we know that that happens. We know that , this is a statement from my governing body, the American Academy of Pediatrics, faced huge mental health sequelae as a consequence, largely of verbal , physical violence, fear of rejection, actual rejection, that include really prominently depression and suicidality, but also body image distortion, substance use, PTSD, and a whole host of high-risk behaviors that put them at risk for things like HIV, whether or not that has a pathologic diagnosis.

00:02:51

When I talk to people, who like myself, and statistically are most likely to be cisgendered, right? So to be cisgendered is to be not transgendered, to be born into a body that feels congruent with your sense of

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self. I find myself starting by really breaking down some concepts that for those of us who were born cisgendered and even heterosexual in this sort of cisnormative, heteronormative world really haven't had to parse out as different concepts. And this is the Gender Bread Person, which for anyone out there that's particularly woke in gender medicine actually has a controversial back story. But I'll talk about that offline if anyone cares. It's come up a couple of times, but is a really useful teaching and learning tool, so I use it. And in this, I really primarily talk about separating gender identity, which is the sort of rainbow colored brain, from sex. So sex is assigned at birth. It talks about your chromosomes, your genitals, the stuff that happens, typically on ultrasound, or in the delivery room, right, in which we're used to thinking about as a clear binary between male and female. So more on that later. It's not a binary. But that's sex. And for those of us who are cisgendered, which is 99 point something percent of the population, the statistics are hard to do, but current estimates are between .3 and .5% of people identifying as transgender, that for those of us who are not transgender, that aligns with our identity. That aligns what, with the brain, our sense of self, our sense of our gender is congruent with that which other people will assign us. For a transgender person, those things are different. And both of them, as we'll see in the next slide, can exist on a continuum. Both of those are different from gender expression, which is how you represent yourself in the world as either masculine or feminine. It's very culturally defined. It's very sort of time and place specific. And we used to demand that if you were really transgender, you had to have a gender expression that was sort of at the opposite end of the binary. If you were really a transgender man, I say really in quotes, you had to want to be GI Joe. If you were really a transgender woman, you had to want to be a Barbie doll, right? You had to sort of ultimately conform to these huge stereotypes that we have about gender expression. And we no longer demand that people do that. I have trans boys who identify as sort of feminine women, feminine men, and that's okay, 'cause if I had a cisgendered boy who told me he was a more feminine man, I would not question his ability to define his gender in that way, right? So identity and sex are different from each other and different from expression. And all of that is different from sexual orientation, who you love, want to be romantically or sexually partnered with.

00:05:29

And this is that sort of spectrum that we talk about. So the very top line is natal sex or anatomy. And again, people think about that as being very binary, male or female, but there are many people who exist in categories that we would group under intersex, right? Which is where there are difference in anatomy, chromosomes, hormone production by the body, hormone response within the body, that put someone somewhere between male and female on that very basic biological data point. Again, gender identity can fall in between those two data points. So I have people who increasingly are out as identifying as gender queer, gender fluid, otherwise, sort of nonbinary. Gender expression and sexual orientation certainly are on that spectrum. So any one of my patients could be at a different place on each of these four axes, right? Depending on how they self-define. Parents are often, like, mind blown. I find myself explaining this a lot to the parents of youth who are in with me. And the kid is sitting there nodding, going, yeah, of course, and the parents are really quite confused by this. It's okay, it's new for a lot of people.

00:06:41

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I also get a lot of parents who say, well he's only five, how could he possibly know? He's only 10, how could he possibly know? He's only 15, how could he possibly know? He's only 20, how could he possibly know? I've gotten this how could you possibly know from a parent of a youth or young adult at any age that I see. And the answer is that if your child was born into a male body and was telling you that he was male, you wouldn't question his ability to know that, right? We know that little kids know their gender between the ages of one and two, they identify physical differences between the sexes. I have a almost five-year-old who, as soon as she figured out that other boys in her daycare class had penises, was like the penis patrol. Tommy has a penis, or whenever diaper changes were happening, she was like there, ready to point out these physical differences. At three years old, people can generally label themselves. By four years old, they know that just because you put on a dress doesn't mean you magically transform into a girl or vice versa, right? And some little kids really do know this and really do know that the gender box that they're being put into by virtue of their biology, doesn't feel right for them. Not every kid does. There are these examples of kids, who from the minute they can talk, are very clear that they are being gendered wrong, right? These kids come to me with a long history, since the minute they were verbal, of being cross-gendered. But that doesn't always happen. So when I have parents of kids who sort of come out later in life, and if later in life is 12, the parents can be confused by that. That's okay, too, but we do know that little kids can be very aware of gender identity and can know what's going on with them.

00:08:17

There's a long history of us using really pretty pejorative medical labels to refer to people's gender status. And the way that I like to leave people who come to my talks with some very clear words that are okay to use. I think often people don't know how not to be offensive, and so they wind up not speaking, and that's not great, either, right? A woman, a person who presents to you as female, regardless of what surgery, medical treatment, et cetera, she's had can very safely and politely be referred to as a transwoman, transfemine, transfemale, and a person who presents to you as male, again, regardless of any history of medical treatment or not, can be referred to as a transman, okay? The person on the left of the screen is Nina Poon, who is a transgender model and actress. And there was a time when in our medical and DSM labeling we would have called her a post op transsexual male, right? So we have, there's a reason it's confusing because the language has really evolved, but you can feel how hard that would be for someone to hear about themselves, and the labels and the technical terms that we use now are really much more respecting of where people are coming from and how they self-define.

00:09:29

All of that to say, is that the kids these days, because I only see people under the age of 25, may use a lot of different words, and I want to give you an approach to that, as well. This is an analysis from a huge national survey by the Human Rights Campaign. They did an online survey. They reached nearly 10,000 youth who identified as LGBTQ, and they had over 1,000 of those youth click the other button when it came to reporting their gender on their sort of intake demographics. They did a subanalysis of that group of youth and found that only a third of them actually use the term transgender to refer to their sort of internal sense of their own gender. Two-thirds of those youth used some other term. And so

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when we come to talk to young people about this, they're really very carefully considered and they're thinking very deeply about sort of personal definitions of gender.

00:10:24

These are the top three of what we now call the sort of gender expansive youth and the nontransgender terms that they used. Androgynous, gender queer, and gender fluid are all meant to convey that kind of nonbinary sense. But you can see there are hundreds, probably, of terms that came up in this survey. And what I would say is when I encounter people clinically, I ask how they define. It's one of my first questions. And if I had someone tell me that they identified as boy, boi, I would ask them what that means. I have, I tend to go into patient encounters with this sort of spirit of inquiry, you know, and even when, actually even when someone uses a phrase like gender queer, which I hear fairly commonly, I say you know, everybody uses that just a little bit differently, tell me what that means to you. And using the, taking the patient's lead, using their terminology can rarely get you into trouble.

00:11:20

So a brief survey of language stuff, again, with some, hopefully some take-home points of what's okay to do and what's okay to say, many people want to know kind of where this is coming from, what's the deal? And there's a lot of conflicting evidence, but the sort of trend of the evidence is emerging to support that there are sexually dimorphic structures in the brain. That there are brain structures that look different in cismen and ciswomen, and that the brain of trans individuals may be somewhere between the two. And the bulk of the evidence appears to show that these structures look more similar to people's gender of identity than their biological sex.

00:11:55

The earliest structures to have been studied are these limbic nuclei, the limbic system is the part of the brain that controls emotion and emotional regulation. And this is kind of projecting to, a little bit too slowly but the top two structures are on the left, a referenced cisman and a referenced ciswoman, and then on the bottom right, is a transwoman. And the, both the sort of morphology and the number of neurons in this nucleus looks a lot more like the transwoman's gender of identity, the female gender, than referenced this gendered man.

00:12:40

This group in the Netherlands and staying, are sort of primary and they've talked about how these are a small marker of really early sexual differentiation of the brain, and that there's some sort of really complex structural and functional network here, related to gender identity. And we don't really know what makes me feel like a woman, as a cisgendered woman either, right? And so we're gonna discover a whole lot about what makes all of us feel the way that we feel about our gender by studying people whose gender identity and bodies are not aligned.

00:13:19

They're doing some very cool, so the initial studies were done from the Netherlands Brain Bank, so they literally had to wait until a transgender, a known transgender identified person died and left their body

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to science, to do these studies. They've moved forward with functional MRI and various structures. These are still really small numbers of people because functional MRI produces just huge volumes of data that are really hard to crunch in large numbers. But showing some white matter structural patterns that are closer to the subjects who share their gender identity and their biological sex are falling, sort of, between the pattern of cismale and cisfemale controls.

00:14:03

And then, some studies looking at cortical thickness. They're doing studies that are ongoing right now enrolling people throughout hormonal treatment to look at how these various brain regions change or don't change when you change the endocrinologic state of a person. And so, what we're seeing is that there are, sort of, brain phenotypes that differ from cismen and ciswomen, and we're gonna learn a lot more, I hope, about the neurology underlying this phenomenon.

00:14:35

But until we have that data, what are we gonna do, 'cause people are suffering. And so, I'd like to remind everybody that what, we've called things psychiatry for a long time that was just neurology we didn't understand. (audience laughs) People with seizure disorders used to be in mental hospitals, locked up, back in the day, right? So there's a lot of stuff that we call psychiatry that we just don't get the background of yet. And, I'm hoping, we're moving there with transgender medicine.

00:15:02

But for right now, we're guided by what evidence there is in the form of the WPATH standards of care, it's the World Professional Association for Transgender Health. It's an international convening body that meets every 10 years, thereabouts, to rewrite this. This is the seventh edition, which is about 10 years old now. You can see, they're the Chinese, Russian, and Dutch translations, I think. So it really is used around the world. They identify three categories of medical interventions that are specific to adolescence. Fully Reversible includes pubertal blockade. A medication called the GnRH analog that suppresses biological puberty for people who are distressed by their biological puberty, and helps, and it helps to buy time when you're working with a very young transgender person, where puberty is starting and it's not right for them. Anti-androgen medications, menstrual suppression and very commonly doing that in young transmen. Partially reversible interventions include cross-gender hormone therapy, and the only irreversible procedures they identify are really surgical.

00:16:16

They have some very clearly laid out criteria for puberty suppression. And the real one that I see is that the idea of puberty is devastating. There are many young people who have been able to ignore those parts of their body that just don't feel right, who have socially transition, potentially, and are living in their affirmed gender. And the idea of thinking of yourself as a little girl and then going through male puberty, getting tall, having your voice drop, getting an Adam's apple, getting facial hair, is really pretty psychologically devastating. And converse for people who think of themselves as male, the thought of having breasts and a period and all of that is really pretty hard. And that's that second bullet point there, that gender dysphoria, that sense of discomfort with one's gender, with the difference between one's

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body and one's sense of self either emerged or got a lot worse with the onset of puberty as sort of threatened onset. And we do all of this with informed consent through parents. One of the things that's different about transgender medicine and my other hat, which is a lot of sexual directive health, is that we do need parental consent. This is not something that, in New York state, can be treated with medications without parental knowledge and consent.

00:17:26

And the Endocrine Society really recommends this pubertal suppression because of how devastated kids are. And again, you can see, remember the last slide if kids aren't having a worsening of their gender dysphoria with biological puberty, then maybe there's something that we're missing in the diagnosis there. Until the age of 16, where we initiate pubertal development of the desired sex, our practice here is closer to 14 for people who have been fully puberty-blocked, because it means you're a late-bloomer, but you're not sort of ridiculously late-blooming. 16, to have a totally prepubertal body, until you're halfway through high school, feels inappropriate to us. And I don't really have the time right now to go into how we determine the readiness of any individual kid, but I would say that 16 is a fairly arbitrary age that's chosen because the protocols are from the Netherlands, and 16 is the age of majority there. 16 is 18, is our 18 in the Netherlands.

00:18:23

So all of these groups recommend that withholding these medications are not neutral. That refusing to intervene in a timely fashion with available medical interventions prolong the gender dysphoria and increase the degree of psychiatric distress. So having these medications available and not using them is not benign.

00:18:43

The Dutch protocol, which I referenced before, is puberty suppression at puberty, or whatever, at 12 or puberty, whenever it starts. 16 for cross-gender hormones, and 18 for surgery. It's a single payer system, so everyone has access to the same sort of types of care. And I like this picture, because it's a really great example of what puberty suppression achieves. So, the young person on the right, and the young person on the left, were born identical male twins. Nicole, on the left, is a transwoman, a transgirl, and is under going puberty suppression. And you have a perfect biological control for what she would look like while living as female, perceiving of herself as female, were puberty allowed to proceed. And you can imagine how psychologically devastating that could be.

00:19:40

Dutch protocol outcomes were published in 2014, and it was a big deal for those of us in the field, when they actually proved that well-being in their patients who had reached young adulthood having gone through this whole teenage protocol, had well-being, psychological and psychosocial well-being, that was similar to or better, than their, sort of, general Dutch peers.

00:20:04

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And the reason that was so exciting is because when you think about what the standards of care in our country produce, as far as psychosocial outcomes, they are horrific. This is a study called Injustice at Every Turn, the National Transgender Discrimination Survey. There's a reasonably short executive study, executive summary, online that's really helpful, but 34% is actually low in some studies. It's up to over 40% of trans people attempting suicide. So it's not suicidal ideation, it is actually the attempt to take one's life, and those are people who survived their suicide attempt. 64% are people being bullied, 73% being harassed in public, and that ranges from sort of casual cat-calling to actual physical harm. And 21% of trans people avoiding going out in public due to fear of those sorts of things.

00:20:55

So when we go back to the Dutch, and we see that their well-being was similar to or better than their peers, that is a remarkable improvement and outcome over what happens to most people with most of the available care here.

00:21:11

We offer cross-gender hormone therapy and puberty blockade. We refer and coordinate care for mental health assessments or various surgical services, for fertility services, with all of the expertise available in Rochester. And then we do refer to adult and pediatric endocrinology where appropriate, although primarily the management is done within our adolescent medicine practice.

00:21:41

We--

- [Dr. Urban] Can I ask a question?

- [Dr. Greenberg] Sure.

- [Dr. Urban] So how, I don't know if you know this, but how widely available is this kind of care across New York state, outside of the city? Would it be in every, like, Buffalo, Rochester, Albany, Syracuse?

- [Dr. Greenberg] There was a larger center in Syracuse until Dr. Irene Sills retired recently, so there's a provider there who has a smaller population. There's a woman, there's a family practice in Oneonta that's actually very well known, but we see patients, I have patients from Elmira, I have patients from Buffalo, I have patients from Watertown. So people travel--

- [Dr. Urban] So you're not widely available.

- [Dr. Greenberg] Tremendous distances to get to us, yeah. When we're talking about being ready to start cross-gender hormones, we do a lot of sort of, establishment of informed consent, goals and expectations, there's a whole series of screening labs, and follow up protocols. And we talk a lot about disclosure, social supports, impacts at school and work, because the psychological ramifications, most people see, sort of hormonal transition as a goal, which it certainly is if you've been searching for it and you're coming from Watertown to get to me, but it's also the start of a whole new journey. So we spend a lot of time talking about what that period of transition will look like, and feel like, and be like, in the various settings for people.

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00:23:03

Masculinizing hormones and feminizing hormones are, sort of, the two flavor of hormone. Feminizing hormones consist of both estrogen, which comes in a couple different dosage forms, and an anti- androgen to suppress the effect of the body of sort of made up hormone production. And the masculinizing hormones are testosterone, available primarily intramuscularly or in subcutaneous it has better effect, but there are transdermal preparations available when people want them.

00:23:31

These are the effects of estrogen. We can see that some things start to be apparent as early as one to three months. We don't think of anything sort of irreversible happening before sort of three to six months, and it takes, at least two years. I tell people to give me two years, when they're feeling impatient, especially for breast development. But some of these effects are ongoing, even after that.

00:23:55

Testosterone has effects that can be seen sooner. I tell people going onto estrogen that if they wanted, I had a young woman (coughs) not transition her senior year of high school, in a social sense. She started hormones, but wore sort of increasingly baggy sweatshirts until she graduated from high school. And then, socially transitioned for college, and was a year into estrogen. With testosterone, particularly things like voice deepening and some facial hair growth can happen fairly quickly. People do need to be prepared to be socially transitioned, or to have people notice these effects sooner.

00:24:34

Some examples of successful transitions, the woman on the Time magazine cover is , probably with , one of the most famous trans people in the country. And then we have, to the lower left, sort of before and after transition pictures of Christine Beck, who used to be a Navy Seal, and then we have Carmen Carrera, , and Chaz Bono there. All visible prominent trans people in an era that I think is really helpful as far as shaping visibility. I do think that having really glamorous women, like Caitlyn Jenner and Laverne Cox be those sort of emblems of transwomen is hard for people's expectations. I tell people that Caitlyn Jenner is a transwoman like Kim Kardashian is a ciswoman, right? I mean, there's like some privilege and status there that most of us are not gonna hope to approximate. But it's nice to have these people be visible.

00:25:28

And this is Rachel Levine, who is one of my mentors in trans medicine, who's the Physician General of the State of Pennsylvania. She was an adolescent medicine provider, a big trans provider at Penn State Hershey, before becoming the Physician General under the most recent governor.

00:25:48

And so that's my info. I'm gonna stop here for questions, and thank you for your, thanks for your interest and your attention.

[end]

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