Ep 95: Transgender Care and Fertility with Dr. Joshua Safer
Fertility Forward Episode 95:
Gender identity is a biological phenomenon! Here to discuss transgender care today is the executive director of the Center for Transgender Medicine and Surgery at Mount Sinai Health System, Dr. Joshua Safer. Tuning in you’ll hear about Dr. Safer’s illustrious career in health care, how he ended up in transgender care, and how the CTMS program started. We also discuss why gender identity falls under the diagnostic category of sexual health and why it is still classified under the mental health code. Next, we talk about how the CTMS program has evolved, what Dr. Safer has learned from his patients, how treatment is customized, and where Dr. Safer sees this field going in the future. Finally, we look at how fertility affects transgender care before we all share what we are grateful for today. To hear all of this and be inspired to get educated on gender identity, join us now!
Rena: Hi everyone. We are Rena and Dara, and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice for medical professionals, mental health specialists, wellness experts, and patients, because knowledge is power and you are your own best advocate
Dara: Today on our podcast, we have a very interesting doctor, Dr. Joshua Safer. He is the executive director of the Mount Sinai Center for Transgender Medicine and Surgery in New York City, which is also known as CTMS and Professor of Medicine at the Icahn School of Medicine at Mount Sinai. Dr. Safer was the inaugural president of the United States professional association for transgender health. Also known as USPATH or US Path? Is that how it is?
Dr. Safer: Yeah.
Dara: Dr. Safer also serves as medical curriculum lead for the Global Education Institute of the World Professional Association for Transgender Health and has been a scientific co-chair for a WPATH international meetings. Dr. Safer is also a co-author of the Endocrine Society Guidelines for the Medical Care of Transgender Patients, the Transgender Hormone Treatment sections for Up-to-Date, the current Transgender Medical Care Review in the New England Journal of Medicine and the current review of Transgender Medical Care in Anals of Internal Medicine. Dr. Safer, thank you so much for being here today. So happy to have you.
Dr. Safer: It's really my pleasure to be here. Thank you for having me.
Dara: Oh, of course. Well, I'm very curious to hear about how you got started working in this specialty area of healthcare.
Dr. Safer: Well, I'm an endocrinologist by training and truth is this wasn't something I was doing forever. I actually have a background in molecular biology and in focusing on thyroid within endocrinology. And, but part of my focus also was as an educator and the educator and academic medicine often is the person who takes what at the time might be considered a miscellaneous topic and care for transgender people was that. And so the transgender patients came to me actually, when yet another colleague of mine had an interest, but left our institution. And I took those patients cuz nobody else had quote unquote, the narrow expertise. And then I had to get educated very quickly. And I'm kind of one of those circumstances where people, a convert becomes a zealot, is a term, I think, and I was very impressed by the gaps in our care and I've been interested in filling those gaps ever since.
Dara: So this was something that you didn't start post residency, post training. It, it was something that came along over time?
Dr. Safer: This is something that came over time. I was not taught any of this in medical school or in residency or in fellowship, which actually is part of the problem or, or part of my interest early on, which was, why is that? Or why was that true? And that's a gap right there. And so that was an area of interest of mine right off. I actually ran some of those training programs at BU, which is where I was before Mount Sinai. And so I could make that part of the training program without even asking permission of anyone else. Those are, were some of my high priority early items.
Dara: Oh wow. So when did the CTMS program begin and how did you create this? I'm sure this is a huge undertaking.
Dr. Safer: So a couple things here, the CTMS, the idea begins in 2015 when Medicare reversed its ban. Medicare specifically did not allow gender affirming care prior to that point. This was contested by a patient and they had a hearing and the ban was removed. Other insurance payers, despite the fact that we think we have a big free enterprise system here in the United States, we don't, it's pretty regulated. And there's quite a bit of copying of Medicare in terms of thinking about what the correct basket of services ought to be. And so once that happened, others thought they should cover it and in certain states, and you can kind of predict which states this might be, the state government view was that gender firming care ought to be a mandatory part of healthcare. And so that all happened in 2015. And what that meant is that a medical center could provide care as part of its standard practice. You know, it has the people in the correct specialties and if they would get reimbursed for what they do, then they could do those things, get training and do those things as opposed to this being something that had to be under the radar or hidden, which is the circumstance. Prior to that, I was actually at Boston university back then and colleagues of my and myself put together a program pretty much the same program. The group here led by David Rich, the president of Mount Sinai Hospital and under the charge of Ken Davis, who's still the CEO actually, pretty pretty senior advocacy there, came together the same years. My program came together at BU in 2016 and they started putting CTMS here at Mount Sinai together in 2016, we talked to each other and compared notes. And the upshot of that was at some juncture, Dr. Rich hiring me to move down to New York to run this program.
Dara: Wow. So it, there was a program at the same time BU, and then you moved here. So that's great to see that, you know, at least there is some care down in Boston and also in New York. To this day, do you still speak with them and kind of consult and share ideas?
Dr. Safer: Absolutely. I share ideas. Well, the person who, who took over from me up in Boston, moved to Massachusetts General Hospital in Boston, right? We slowly, slowly educate and disseminate and increase the number of programs. It's still, there are few programs as comprehensive as ours, maybe about a half a dozen trying to get into this space. There are maybe 30 or so programs with pieces, maybe just a hormone care component or a surgical component or a handful of pieces, pediatric component. But certainly it would make sense to me that every state or major academic medical center should have some degree of a comprehensive program that would make the access appropriate for patients to have their local academic medical center do this. We're not there yet.
Dara: I can only imagine. I mean, it's only it's six years it sounds like. So in many ways it's exciting, but it's, it's also quite surprising that it's only in its infancy.
Dr. Safer: Yeah. Even the shift in thinking of care is new. So people had thought of being transgender as a mental health concern. We still, our diagnostic code for being transgender internationally from the World Health Organization, still as a mental health code. The World Health Organization already voted to change it to a sexual health code with the next iteration of the diagnostic code manual that gets used, but that hasn't even come out yet. So we're still, that's how new things are that we're still doing that we're still labeling people as having a mental health concern when we recognize that gender identity is a biological phenomenon, then that means having that disconnect between gender identity and other parts of your biology are just your biology. There may be mental health support that you might need, but that's, but it's not a mental health situation per se.
Dara: I mean, that's wild that, you know, it's great to see that there's steps being taken to change the coding, but the fact that it's still not there is quite wild and, and to know how long it actually takes to, to pass through all the steps. It's, it's kind of unfortunate.
Dr. Safer: Right. But that's bureaucracy for you. And when you take it to an international level, I'm guessing it'll be two to three years for, the diagnostic manuals called ICD. So we use ICD 10 right now, the 10th version, and it's gonna be, ICD 11 in a few years internationally, but then there's a whole other bureaucracy here in the United States who knows. We were very late in adopting ICD 10 over ICD 9 in the day. And so it may be a very long time before we actually got our nomenclature correct even.
Dara: Oh, wow. So tell us a little bit more about the program and kind of how it's evolved from its infancy back in 2016 and kind of what's been added over time. And also my assumption is, I, I'm assuming that things have been added over time is partially on an ad needed basis based on what your, your patients need?
Dr. Safer: Yeah. So the program began well with many interested people because the commitment on a part of Sinai was quite high with a surgeon who could learn to do some of the more sophisticated surgeries, a gynecologist, a urologist, a primary care nurse practitioner, a mental health person, a business person. And they brought in an endocrinologist fairly early on and that was the group. Oh, and there was an adolescent health medicine person all kind of disconnected from each other, doing their thing. The growth of the program kind of follow, there's so much need at so many different levels that the growth of the program actually has expanded both where need is observed to be and where opportunity exists because we have somebody with an expertise and an interest. And so it's a mixture of those two things. And so we've expanded in the six year period. Right now I think there are 11 surgeons who are connected to the program, including three, who are really dedicate themselves full time to sophisticated plastic surgery. We have a, a surgical fellowship in fact to train new people of whom about, well, two of them are now our own faculty and the others over those few years of figure, it's I think, five or something like that, have gone to other programs so that they can actually build programs. We had started with that nurse practitioner, but we instead just for sheer bandwidth, have I think 26 now, primary care providers around Sinai who are part of our network so that people can have a primary care provider near where they work or where they live. And aren't forced to go to one of our so-called labeled sites for primary care. And that gives you some perspective. I think we have a total at Sinai of over 3000 people in active care. And over 8,000 people have come to Sinai for something, you know, they might have come from outta state for a surgery, but they have most of their care where, where they're from, things like that. That additional 5,000 have come for something in addition to the 3000 plus who are in active care here. And we have anywhere from 70 to a hundred people come to ask for care at all levels every month.
Dara: Oh wow. That's incredible. In terms of how quickly, you know, the program has grown on both sides, you know, in terms of more care, more medical care to help meet the needs of the influx of patients coming in.
Dr. Safer: Right. The fact that we make it safe for people. I think that's really the way this is understood medically, results in people coming forward. Polls had suggested that anywhere from two thirds of a percent to a full percent of people are trans. The numbers even look a little bigger when you include people who think of themselves as non-binary, but it's a little unclear whether they really want to do anything medically about it, but they can think of themselves as broader than just male or female. And so think about that percentage of the population needing some care, or let's say some fraction, whatever it could be, doesn't have to be half, it could be a quarter, looking for various interventions, some more, you know, hormone treatment or surgeries. And then there's a whole additional component, which is kids know their gender identity. And at least some of them think about it at younger ages than others. And so there's a whole element at the pediatric level as well, where we're also building a reference. They had an adolescent medicine specialist at the time, we've added an adolescent medicine, mental health provider, and a pediatric endocrinologist to get really into the, to the nitty gritty for those for whom are they're old enough to actually be having interventions already. And so there's need there too.
Dara: It's great to, to see that you're also offering care for the younger generation, because I do feel like their terms of support at a younger age. I think that's great that you offer that. I'm assuming it sounds like a lot of the protocols have been created from like ground up. There wasn't a lot of textbooks or, you know, as you mentioned, it wasn't something you necessarily learned in school as much as that sounds quite overwhelming. That sounds pretty amazing. Was a lot of the care that you learned about also coming from the patients and kind of what the patients were telling you that they wanted?
Dr. Safer: Well, it's interesting cuz there's learning going in both directions and it's not always specific to their care. So one thing is that people who are, who are labeled intersex or DSD, which stands for differences of sexual differentiation and that's where they're born, usually where something where you can see that their genitals aren't what we would typically consider male or female. And there's a wide range from fairly minor things to more substantial things that might require more important interventions. It's the experience of those people who taught us that gender identity is biological or at least if there's a significant biological element because our approach to those people used to be to do whatever surgery, if they needed surgery made sense and convince 'em to have the gender identity, to match the surgery, which is an abysmal failure. So that's how we learned, unfortunately. But another thing we learned just this is an example of learning from the patients, the transgender patients come in and we talk about and their gender identity is what it is. And it takes a little while to think about it, cuz we have no test for them. They have to be able to understand gender identity and explain it to us. And we have whatever treatments we have available to us and some are better and some are worse and the people make different decisions in terms of how they wanna deal with that world. And, and it's very customized. We customize, you know, more hormones, a little surgery, some mixture, very, very different for different people depending upon their other circumstance. So they taught us how variable that is, which has actually informed how we take care of the intersex and DSD people. Because the idea that we could do a surgery when somebody is a kid, when I do variations on some of those same things with older people who make up multiple different choices, lets me know, well, why could I, how could I possibly decide with that kid, if I have had any capacity to wait to find out what that kid really thinks and not just do something when they're a baby, I should probably be doing that. And that actually is changing thinking in that direction. So yes, maybe not exactly what you were thinking I was gonna say, but we have a lot of knowledge. We know endocrinology, we know what the hormones will do. We know what our surgical techniques can and cannot do, but also learning from the patients and applying some of that knowledge to people who aren't trans is a key point of what I'm saying there.
Dara: I mean, it makes sense. I think it should be you know, both sided in terms of you have a lot of, you know, the medical team or the support team has a lot of the knowledge, you know, that they learned in school and also from hands on experience working in a hospital, but the patients themselves have I'm sure very interesting questions and, and certain things that perhaps, you know, the medical side wouldn't necessarily consider, can be brought up, which further helps expand the care for the patients.
Dr. Safer: Absolutely. That makes me think of two things. One is, it's a thing that patients have had to teach their doctors the care. That shouldn't be happening. That's a situation where it's a little on us and the establishment medical system to be, be training the medical providers correctly. So, so when you say, oh, did the patients teach you anything? Some people immediately rush to think of that where they, like, show up and they say, well, a typical hormone is let this cuz I read it online. But you know, those online, that online information, sometimes it's okay and sometimes it's not so okay. And we in the endocrine world, for example, if I'm talking about hormones, know some of the bugga boos there and really it should be known across endocrine in standard endocrine training and it is actually effective this year, what we really know and what we don't know in terms of hormones. So patients aren't like reciting to us what they read online and are believing it, it might be that they recite it and we say, oh yeah, they say it exactly right. Or, or, or the opposite. But the point is the patient should not be in the position of needing to be their own doctor in this case. And I was thinking one other thing, but now I'm blanking on it. So we'll get To that.
Dara: If it comes back, definitely let us know. I'm actually definitely moving now towards somewhat more of the fertility world. Are there any specific fertility considerations for gender affirming medical care specifically?
Dr. Safer: Fertility is big and actually that's an area where once we start to recognize that this is medicine and these are the interventions and this is how they work and they don't work. Then one of the concerns is that when you start to manipulate these hormones and even more dramatically, when you start to do some of the surgeries, especially specifically genital surgeries and those on reproductive organs, then you're going to interfere with fertility. And here is a specific situation where there is an assumption that nobody, that the patients don't care to some degree and it's been a little, the patients have to say, well, of course I'm interested in fertility. If it's an option, I just didn't think it was an option. You know? So that kind of conversation happens. And I think if we get to the happy future place where somebody is trans says, I'm trans and this is what I wanna do about it. And the medical person is says, oh sure, this kind of works. This doesn't work. If nothing, technologically improves, fertility is a concern.
Dara: Yeah, for me, I think it should definitely be a discussion. I always also wonder when is the specific time period to even have that discussion. And now that we're seeing a lot of pediatric area having that conversation, especially if, if a child at that, you know, when you're young, you don't don't necessarily know what your future holds or what you kind of wanna do, when is the right time to even have such a conversation?
Dr. Safer: Well, so the time to have that kind of conversation is variable depending upon the circumstance and the treatments that you're looking at and also, you know, and what impact they're gonna have on everything. So, and it's really caused us to rethink things a little bit. So we have some circumstances that maybe aren't that big a deal. So our trans-masculine folks, our transgender boys, female to male are mostly getting testosterone at some age, if they're looking for an intervention and because genital masculinizing genital surgeries have not been as well established there isn't as big a rush to that. And if there's not a rush to that, often reproductive organs are left in place, which just means that a transgender man might be walking around with ovaries and it's at least possible. I cannot tell you if it's, if the odds have been diminished or anything, there are no data. Talk about another gap. It's a research area, which is another area that we need to work on in our, for our program. But that transgender man ovaries can have a stimulated egg harvest for implantation in somebody's uterus. There is a circumstance of some transgender men stopping their testosterone. You can't take testosterone and bathe a developing baby in testosterone. So, but we have some transgender men who stopped the testosterone and carry the baby. That is a thing. But we also have a situation where we have transgender men in relationships with other people with uterus, like cisgender women. That's actually probably the most common relationship. And then that's a thing we've been able to do it at Mount Sinai. We published the first paper on the subject. So very exciting to be able to tell people that it's possible at least.
Dara: Oh wow. So it's nice to see that there's beginning stages of this. And it sounds like there's a lot more to come down the road. What would you say are the current largest barriers that transgender patients face when obtaining medical care? And it sounds like part of it in terms of, you know, Medicare or such, but is there anything else that you feel is really a big barrier?
Dr. Safer: The biggest barrier to care all along since I've been in the field anyway has been knowledgeable providers. Even when we were doing things under the radar, the knowledgeable providers were the bigger barrier than the insurance company payment situation. So the insurance payment situation has changed in the majority of United States, at least where the majority of the population lives. At least the largest states does shift because we're able to train more people too. So it helps solve that problem to a degree. And I'll give another example back to fertility and where people we're thinking one thing, and it's how sophisticated you are in terms of thought process. So it goes like this puberty blockers are instituted for kids because they're reversible. And the concern historically was, oh, a kid says their transgender. What if they're not? And we've done something permanent and harm them. And therefore that's where puberty blockers come in. They’re a conservative intervention where we have experience in other early puberties where we give those kids, the, a puberty blocker for a couple of years, we really pause their puberty. We don't block their puberty and, and then you stop the medicine and they go through their puberty just fine. So it’s kind of the universal approach and the thought process is, well, let's get these puberty blockers on board as early as possible at the beginning of puberty, something that's called Tanner stage two. Well for transgender girls, so that would be male to female, if you block puberty of, of somebody who's going through, what would be considered typically a masculine puberty, they're never gonna get any sperm development. And if they really are looking for future treatment and most of these kids are, most of these kids are not confused and they are not saying, oh, I'm not trans after all, or I don't want treatment anyway or whatever. That's mostly not what's really happening mostly. They're like, yes, I really am trans and I'm ready for my next step. And so if you just go on that path, then you really have created a barrier to fertility for that individual and you could have them go off their hormones and get sperm development. That's a thing. I don't know if it's compromised any degree, but it certainly can work, but most of our transgender women don't choose to do that. And so it creates now, if we're gonna be a little more sophisticated, it makes us think, Hmm, maybe for transgender girls, we should be giving puberty blockers a little bit later in puberty, waiting for them to have sperm development, at least letting them bank that sperm. So they keep their options up, but it's not a very expensive process. And so an easy thing to be supported by individuals on their own much of the time or even the system. If we did it a little bit more broadly and just something to consider that we've only, we've barely begun to discuss it because people who are sophisticated in the field are barely present
Dara: Well. So you made a good point that there's a lot of information. There's a lot of potentials, but we're still in infancy. And I think it sounds like a lot of it has to do with education. It starts with education. I agree. It works both ways in terms of the patients themselves asking questions and the, you know, the medical team doing research, also asking questions on the other side and kind of working together. And it's, for me, it sounds really exciting that the program that you offer at Mount Sinai really does cover so much. And I know you had mentioned research. What, what are some research areas that you're kind of interested in, in looking at?
Dr. Safer: I'd say it's the gamut because nothing is known
Dara: Or, or maybe another way of putting it - where do you see the future in this field going?
Dr. Safer: So I can tell you some areas of interest. So I mentioned when to begin puberty pause for the transgender girls. Well question is, is there a nice window where we could get a little sperm development, a little sexual function, cuz that's actually its own issue where there's concern with early puberty blockers and impact on sexual function too. Not that you wouldn't get it if you stopped them, but you never do. That's the problem. Versus how masculine let's say their face might be, you know, at that same time period. And so just looking at that so that we could maybe rewrite our protocol, that'd be an important thing to look at. There's much talk about the different types of treatments and knowing, especially estrogens and some of their risks and really knowing what those risks are and the degree to which they're mitigated is of interest. I think heavily along the lines because they're not as dangerous as everybody thinks. And so putting that out there with some data could be reassuring. What the different bug a boos for the patients with surgeries, cuz right now that's a more of an ad hoc world where people have a certain surgery and they think that is what it is and knowing what options and what we could be doing to optimize techniques probably is an area of interest as well. And then things that are generalizable, we focus heavily on research that will benefit transgender people, but we forget that gender identity, if it's a biological phenomenon is universal and we all have gender identity and understanding that and all of its impact across all of humanity. That's kind of an interesting research point and to the hormone risk thought there, I was talking about it just in the context of treating a transgender person, but it's also relevant cuz we use some of these same hormones for other circumstances and we can learn about the impact on again, all of us, we're all on that spectrum somewhere there.
Dara: You make a good point. It sounds like knowledge is key and we're still learning a lot. In terms of resources for our listeners, where can people find good quality resources in the same token, how can people follow you?
Dr. Safer: Well, people are welcome to come to Mount Sinai and I think you asked the question earlier, which I didn't never did answer. Was there anything, the fact that we could design this program to anything that came from that being able to build from the ground up? And one of the things that's come from it is we haven't inherited as siloed a circumstance as you might somewhere else. We're trying to be unified, even though we live in the different departments in the hospital. And one of the things we do then is we have a unified phone number where you can call it's on our website. It's 2 1 2 6 0 4 1 7 3 0, but easy to find on the website. And then you reach the Sinai operator who takes a message and relays it to the program where somebody gets back to you in a day or so. And that's for any gender affirming care. So whether you're thinking of some specialized surgery, cuz that's where you are in life, where you have a kid you're wondering and they're kind of exploring and could you get some advice or some, you just showed up to town and you need your hormones refilled or you are thinking you’d like to start hormones. Or if you have a fertility concern, like we just were talking about. Whatever it is, we'll help steer you to the Sinai-connected people who can do those pieces for you.
Dara: That's fabulous and quite reassuring cuz a lot of times people don't even know where to begin. So to have like a base, a hub to help guide you in the right direction, wherever that direction may be, that's reassuring. I can't wait to see, you know, what becomes of this program and hopefully have you on again, down the road to kind of get some updates to see what's been added and how things have been modified and very excited to have you back on. Before we end our session, I like to end our sessions with a moment of gratitude. So Dr. Safer, what are you grateful for today?
Dr. Safer: Well, two things, well first I want to say I'm happy to come back, would be excited to do that and what I am grateful for - so many things, but let me be grateful in this space. I'm grateful for two things there too. Also two, one is just to be lucky enough to be the establishment provider at a time where I, I could be useful. That's why a person tends to go to medical school and there are multiple ways to be useful, but this is an especially cool one. It's a little random like you heard. And so it's a great gift to me to be in a position where I get to be the one making a decision, which I hope is a right decision. And the second element of that is gratitude to leadership at Mount Sinai. This is driven by real advocacy. Like you heard me say from the CEO and the president of the main hospital and the program is expanded to all of Sinai where it is widely received. We have real support from the downtown leadership, the CEO at Mount Sinai Beth Israel campus. And now we're expanding up to the, the morning side campus, the old St Luke's hospital and same thing just we're embraced and investment by the institution in getting this right and taking care of people correctly. And I'm just so thankful for that.
Dara: How beautiful I'm thankful I've said this before, but I'm thankful for being a part of this podcast, for learning every single time I meet with fabulous speakers such as yourself and so happy to see that there's, you know, slowly but surely expansion of care, proving quality of life for people. And really I'm very impressed that you are really leading a big part of this area that is much needed. So thank you so much Dr. Saer for being on today to share a little bit about who you are and what you do and we're really appreciative. Thank you.
Dr. Safer: Well, thank you very much. Thank you for the attention.
Dara: Thank you so much for listening today and always remember - practice gratitude, give a little love to someone else and yourself and remember - you are not alone. Find us on Instagram at Fertility_forward and if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.