Ep 100: Gender Affirming Fertility Care For Transgender and Gender Diverse Patients With Dr. Samantha Estevez
Fertility Forward Episode 100:
Welcome to the 100th episode of Fertility Forward! Joining us today is the award-winning Dr. Samantha Estevez to discuss her research and mission to make fertility care more accessible for members of the LGBTQIA+ community. Dr. Estevez explains some gender terminology to us and talks about who falls within the gender diverse category before telling us why we need to be educated on how people express gender identity. Next, we discuss how transgender and gender-diverse patients are affected by fertility care, why fertility preservation is important, the lack of fertility resources available to patients who have transitioned and why, and how finances and insurance affect gender-affirming care. We also delve into why training healthcare professionals in LGBTQIA+ diversity and sensitivity is essential. The hosts even learn a new term today; TGD (transgender and gender diverse.) Finally, we all share what we are grateful for, and Dr. Estevez tells us how happy she is making the world a better place through her research. Thank you for tuning in!
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: Dr. Samantha Estevez is a fellow in reproductive endocrinology and infertility at the Iah School of Medicine at Mount Sinai, New York City and Reproductive Medicine Associates of New York. Dr. Estevez has earned her Bachelor's of Arts in History in Women's Studies at the University of North Carolina at Chapel Hill where she graduated Summa cum Laude and with her honor thesis in Japanese history. She completed her medical school education at the Northwestern University Feinberg School of Medicine in Chicago and a residency in Obstetrics in Gynecology at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell in New York. Throughout her medical training, Dr. Estevez has received numerous awards, including Northwestern's Global Health Initiative Scholarship, the Northwell Health Culture of Care and Action Award, and induction into the Gold Humanism Honor Society. As a resident, Dr. Vez was the chief resident of research and a member of the residency interview committee. She has authored numerous articles in peer review journals and presented at several prestigious conferences including the American Society Reproductive Medicine's Annual Meeting, the American College of Opticians and Gynecologist Annual Meeting, and the World Professional Association for Transgender Health Annual Scientific Symposium. Her research and clinical interests include LGBTQIA+ fertility, access to care for underrepresented minorities, reducing health disparities and fertility preservation. Dr. Sammi Estevez , thank you so much for coming on today and we're very excited to have you on because the ASRM conferences are or the symposium is quickly approaching and we are very excited that you will be presenting one of your abstracts. So thanks for coming on today to share with our listeners all about your research.
Estevez: Thanks so much for having me. Very excited to be here.
Rena: So let's dive in. So the title of your abstract is Current Access to Fertility Care for Trans and Gender Diverse Patients Across United States Hospitals. So the first question I have for you is, what does trans and gender diverse, which uses the acronym TGD, mean and who falls under this umbrella?
Estevez: Sure. So just kind of starting with the basics, everyone is assigned a sex at birth and that can be male or female or actually intersex, which falls in between. But most people think of you know, the male-female binary when you think of those gender reveal parties and things like that. But biologic sex is separate from gender. So gender is kind of how somebody puts themselves within context, how they view themselves. So there are cisgender people and transgender people. So cisgender people are people who identify with what they were assigned at birth. So for like myself, I identify as cisgender. So I was assigned female at birth, again based kind of on anatomy, and I identify as female. But transgender people are people who don't identify with what they were assigned with at birth. So say you were assigned female at birth but you identify as a male or something that's non-binary cause gender is also wide spectrum more than just male and female. So TGD kind of encompasses anyone who doesn't fall within that cisgender category. So it could be people like I said, who are transgender, people who are non-binary, people who are gender-queer. There's a lot of different names and one of the things, you know, working in this field or being a part of this community we learn is that it's a constantly evolving thing. So you have to be pretty up to date on things cause the young kids are always finding new ways of, you know, making their gender identity their own. So there's always a lot of change in the phrasing, but TGD is a preferred term because it's very inclusive and it's not limiting people to that binary.
Dara: I'm actually surprised I've never heard that term before so I'm thrilled that you're not, I'm sure you're educating our listeners, but you're really educating myself. There's always something to learn.
Rena: Sure. So what type of fertility treatment might someone who identifies as TGD need?
Estevez: So they could need really anything that anyone walking in off the street would come to a reproductive endocrinologist for. Whether it's they're actively trying to build a family or they're trying to preserve their fertility. You know, what's a particular interest for this patient population when they see us and what most of the conversation often centers around, but like I said, it's not, the whole thing is about fertility preservation. So when people within the TGD community plan on undergoing medical or surgical transition as part of, you know, gender affirmation and becoming their whole selves kind of inside and out, there are different risks to those different procedures and treatments. So some of those things do put fertility at risk or could subsequently make somebody completely infertile. So things like starting hormone blockers for younger patients or if somebody's already gone through puberty, then going on to hormone therapy. So if you were a trans woman or transfeminine starting estrogen or trans man or transmasculine starting testosterone, those can impact your reproductive abilities. And there's lots of research part of, you know, what I do and a lot of people in my field do are looking into what those, you know, true outcomes are. So we can give people better numbers of what their risks are, but we do know it can have some impact. So really the best way to kind of avoid any of that and what's recommended by ASRM, WPATH, and most of the other groups, the Endocrine Society, would be to go ahead with fertility preservation before going the route of any of those medications. And obviously the same applies to surgery. Generally when somebody's transitioning, surgery's coming later on in their transition. But surgery, if you’re removing testicles, if you're removing ovaries, obviously once those are gone there's no way to, to get them back and to then get obviously as coordinated eggs or sperm. So cognizant from the beginning.
Rena: And is that a conversation that most physicians bring up in an initial appointment with someone that's looking to transition, you know like hey we should also talk about preserving your fertility while we're doing this?
Estevez: It's definitely a recommended guideline but it kind of falls within, you know, question as to how frequently it's happening and what people kind of see as a responsibility. Just like I couldn't really counsel people on the finer details of what the end outcomes might be after they have a vaginalplasty. You know, surgically-wise, I wouldn't necessarily expect a plastic surgeon who's gonna be doing, say, that procedure to give the finer details of what the process would be if somebody were to see a reproductive endocrinologist. The difference with trans patients and gender diverse patients is that you don't really wanna miss that window. So everyone has to be cognizant of all the other members of that team that all come together, that multidisciplinary care for these patients. So we don't miss things. You can't stay kind of focused in your own silo of your field and you have to be ready to refer people to. And we've seen as time has gone on, access to care is slowly increasing. There's more referrals coming even at RMA over the last several years and hopefully continuing to move forward. But even this weekend I was at WPATH’s conference and one of the surgeons who was there asked that exact same question, like is this my responsibility to ask or is it your responsibility as the GYNs and the reproductive people to counsel patients on this? And the response that I appreciated from the people who wrote the most recent guidelines was that it's everybody's responsibility. It's everybody's responsibility. So even if you can't give the details, know where to send people so they can get that information and if they decide to move forward with fertility preservation, they can and if they don't want you then they've made an informed decision.
Dara: Yeah, you made a good point that you know, everyone should be knowledgeable on it and be able to provide care. And from the research that you've done, what did you find when you were looking into, you know, various institutions across the US? You know, when you were going online to their websites, were you finding resources for this population group?
Estevez: Sure. So like you mentioned my study, we kind of surveyed almost 700 hospitals across the United States. We looked at if they had trans and gender diverse care. If they did, was it at a clinic or was it just solo providers who identified on the hospital website, Hey, I'm familiar with how to take care of these patients and I'm a resource for them. And then, specifically, what fields of medicine kind of in that larger multidisciplinary care setup that we need for this TGD population. And so we looked at the specific breakdown of those things and what we really found was that in US hospitals a minority of them really offer trans and gender diverse care, identify their websites as such. And you know, that's with the caveat that websites aren't perfect. Maybe things aren't updated, maybe a provider didn't put that on there but taking the perspective of a patient if all you can do is Google and find your local hospital's website. If you don't see anything, even if it's there, it doesn't exist to the best of your knowledge. And then we also found specifically when looking at fertility care, even less. So, that begs the question of why is fertility care not really recognized? The bigger things which people often think about transition, you know, general medical care, your endocrinology, your surgery, even GYN were fairly well represented when you looked at the different things that were offered for TGD patients at these different hospitals, at the ones that did have it. But fertility care was always amongst the minority. And you know, some of this information that I actually just presented when I was at WPATH this last weekend really played into that. And what I was presenting there was the fact that if you look at the websites of the REIs that are affiliated with all of these hospitals across the country, a majority, more than half of them, have specifically not even just LGBT care, specifically trans and gender diverse fertility care listed on their website. So again, it kind of raises the question, why do REIS consider this part of the care and you know, the standards of care that are put out there say yes, fertility preservation or conversations about future fertility should be kind of broached at every point. But why are the hospitals that are, you know, the larger institutions missing that piece for these patients. And patients are focused on very important things and just like within any part of medicine, you can't hold them accountable to know every single person, especially in these large things, every single person they need to see in it and at what point, that's where we have to kind of take over and make sure that our patients aren't missing things and that we're serving them the most appropriate way possible.
Rena: That’s a great point. I mean why, do you have any sort of hypothesis as to why the hospitals aren't listing this and why REs are?
Estevez: I think it could be a variety of things and obviously there's political reasons. There have been shifts in recent months and various states that, I'm not gonna specifically name but you know, doctors being targeted if they provide this kind of care, whether it's to trans and gender diverse youth. Also just the states that people might be in, it might be more conservative in other ways that doctors can't find that, don't feel like that's something they can make available. Some places are religiously affiliated, just don't offer those kinds of things. You know, there's a variety of reasons and we kind of broke that down and tried to find certain themes that went through, say if you were an academic institution, like had a medical school affiliated, more likely you were going to have these different resources available. Or if you already had a program set up and it wasn't, like I had mentioned before, single doctors who offer trans and gender diverse care, if you have a program, most of those programs tend to think in that large multidisciplinary comprehensive view and so they do mention that. So I think it has to be a two way thing. We can't just place blame on hospitals. Like I said, one, they might have these things, we just don't know it and then maybe the local community know what's offered and just not listed on the hospital websites. But two, we as doctors have to hold our hospitals and employers accountable to make sure that that kind of information is made available to this very, you know, at risk group because we don't want these people just going through their transition and then at the end of the day they feel happy with themselves, they're good with who they are, they're in happy, healthy relationships or single and they wanna proceed with having a family and if they wanted a genetically related child that's just taken away because they weren't talked to by the right person at the right time.
Rena: I mean that would be totally devastating.
Rena: I mean is there anything around insurance coverage or like finance is being a barrier to care here and that's also playing a role?
Estevez: Most definitely. So you know, insurance is always a little bit difficult when it comes to reproductive care, whether you're cis or whether you're trans. It depends on the state you live in, it depends on your employer. There's lots of limitations and we all know it's inherently an expensive thing to undergo. And say if you're doing fertility preservation, it's also the first step of a larger process that's to come later. But finances and insurance definitely play into things because generally it's well known that the LGBT population, but even more specifically the trans and gender diverse population, there's a lot of issues when it comes to accessing medical care. So when it comes to accessing care, there's discrimination, they have a lot of problems even finding a doctor who's willing to take care of them. And then depending on where they're in their transition, insurance can be, like you were mentioning, can be a barrier. So if somebody, say somebody's gone through their full transition, they were assigned female at birth, they've gone through their whole transition as far as hormones, legally changed their name, their insurance recognizes them as a man, they come in to freeze eggs or have pregnancy care or undergo any kind of fertility treatment, there's almost always going to be a kickback from the insurance - well how can a man have this X, Y, and Z? So insurance can come back like that. In addition to the general difficulties of insurance covering things, insurance can, you know, in general is a challenge for a lot of trans patients in accessing any kind of gender affirming care beyond just fertility care. So there's always a kind of a paucity there and lack of support. And you know, one of the more interesting things and think that you know, for future and maybe different organizations can work on this, you know, we have patients who come to us in fertility care, our oncology patients. They're coming to us sort of in a, not sort of, exactly in a time of crisis, they've just gotten a cancer diagnosis, we're going to do whatever we can so they in the future can have the possibility of having children that are genetically related to them. And there's different organizations as they should be that support that. So like Livestrong and different groups like that, they can supplement beyond what an insurance company might cover because it's this, you know, extreme sort of situation. But the same rule sort of applies to our transgender patients and there's no separate support for them. So these patients are coming and if they don't have the money in their pocket and their insurance doesn't cover it, then a lot of them just aren't even able to access care at all. And so they don't even engage in the conversation because they think it's not an option when they should really still be able to know what it is. And hopefully, you know, as time goes on, organizations and groups and funds would hopefully be founded to support that to supplement until insurance kinda catches up to where we are.
Dara: It's nice to hear that there's some support but it sounds like we're still a long ways away.
Estevez: Most definitely.
Rena: Yeah, it’s disheartening. It sounds very behind.
Dara: Yeah, well I wanted to go back, you know, in terms of physicians and training about you know, the TGD community, is this something that has, you know, is this something new that is being taught in schools, number one. And for people who are already beyond that in our physicians, the way I see it is, you know, we have requirements in our professions for you know, ethics, for continuing education, but I feel like this should be a required continuing education opportunity.
Estevez: Yeah and I completely agree with that statement. So medicine's growing leaps and bounds. The world's shifted a lot in the last couple of decades and outlooks when it comes to LGBTQIA people and trans people. And so the world's more aware of us, the world's more aware of the community as a whole and a lot more accepting. There's plenty of studies just kind of showing, even just looking a little more locally in the US how those trends have changed and people are generally better with with those concepts of you know, gender and sexual orientations and differences. But when it comes to education within medicine, it's always a little bit slower. But even when I was in med school, and that was already many moons ago, they started having sessions on this and more and more people are coming in and really it's the next generation of future physicians that are really advocating for this. And I found a lot of people, if they don't have those resources, they'll ask for them and schools are obliging to that. So last week I met with the LGBT group at Sinai and me and a few of the other OBGYN fellows and residents met and it was an entirely full lecture hall. And when I was a med student, there was a couple of us in the LGBT group and that was it. So schools are supporting future doctors and learners in this. I did a study when I was a resident looking at whether residents felt like they were equipped to really take care of trans and gender diverse patients in general GYN, not even infertility, and really that just showed that the majority of programs don't really have it as an integrated standard part of their training. And doctors, there's plenty of guidelines out there and plenty more to come and even ACOG and larger organizations have different educational tools but like you said, they're not as fully integrated and it kind of makes it difficult cuz if you're getting your first trans patient coming into your office or your first gender diverse patient coming into your office, you have to kind of reframe how do I do things differently cause there are different ways of approaching these patients to be inclusive and sensitive and aware of what their unique needs are. So ASRM is working on that right now. I'm leading, we have a few publications that should be coming out in the next year and I'm leading the publication that's going to be making the new guidelines for ASRM as far as trans and gender diverse people. And then there's going to be another one that's more broadly LGBT and even another one that's gonna talk about language cause like I said, it's an ever-evolving thing. So the larger organizations and groups that kind of oversee things are trying to make change, it's just, it takes time and a lot of times it falls on the individual physician to just kind of find the resources that are available and do the best that they can even if they didn't receive that training.
Dara: That's exciting that you are part of that group spearheading this and creating it and it's, I'm sure it's exciting to see how it's evolved and how it will evolve over the years.
Estevez: Yeah, it's very fantastic and it's bringing together a lot of really great minds from across the country and across different fields cuz we're trying to make sure that it includes parts that are directly relevant to fertility care and then things you might just not know at baseline. So we have, you know, very well known surgeons. A lot of the people who are writing this with me are people I saw at the conference this weekend, internationally renowned in their fields and they're writing this section for ASRM because they wanna make sure that we have as detailed, as comprehensive and up to date information. So if you're an RE and you wanna a quick look to kind of orient yourself, if it's your first TGD patient coming in, you'll have this quick bulletin and you'll be able to move forward.
Rena: That's amazing. And I think, too, the concept that you said, you know, we have to, you know, each patient is unique and has individual needs. I mean I think that applies to any patient, whether their cis or trans, and I think that is to look at patients with just a, you know, bio-psychosocial or comprehensive picture. You know, every person coming to seek treatment is different and has so many different presenting needs and you know, to view each person as such I think makes the patient experience so much better.
Estevez: Most definitely.
Dara: Is there any research that you would love to look into in the future? Or based on what you found currently, is there anything that you wanna build upon?
Estevez: There's just so much. There's really so much to do. You know, the difficulty when doing research with TGD patients is kind of goes back to what we've already been discussing is how they access care and what limited availability they have in coming to us and lack of, you know, direct pathways for us for them reaching us, not just here but anywhere across the United States and across the world. So a lot of the studies that we have looking at a little more of the nitty gritty science when it comes to how do these hormones affect your future fertility or are you able to get pregnant after this or can you, you know, use one of your gametes with a partner or somebody else or a surrogate? All of those kinds of things, when all the studies, when you look at them, for the most part they have very small number of patients in them. And that's kind of the difficulty or the crux of the difficulty, we can't make big conclusions, which is, you know, any scientist will say we want big data, we wanna have a lot of numbers so we can really understand the trends and make strong conclusions that are based in fact. And so in the future we really have to work on making a sort of collaborative model for people across, you know, the US and across the world to really combine things. So it's not 20 patients here, 20 patients here, let's figure out if these things go together. It's more of finding a way for us all to connect as doctors and as researchers and advocates for these patients so we can better serve them with, you know, more meaningful data. Because you can come and you can tell them outcomes, but if somebody asked me, well if I've been on testosterone for one month versus 10 years, what's the difference that that’s going to make in my ovaries and my ability to produce eggs if I went off and we went and did a stimulation cycle? There's just no data for that and we need to work together to really figure that out. And having that volume of patients will only serve future patients better. And you know, it might also just increase that awareness within our community, within the general medical field for patients and people to know that we're part of the story and we don't want people missing out on this opportunity.
Rena: So it sounds like this is very new research. I mean do you know kind of, I dunno what year your study started or when this really started to be research, but it does sound like it's a very new field, which I'm sure is exciting, daunting and then also kinda sad in that you know, that data should have been collected sooner so that you know, people didn't have regrets or missed the opportunity to preserve fertility.
Estevez: Yeah, it's a very new field. It's variable based on where you are. So depending on your setting in the United States, it's completely different than say in the Netherlands for patients who were transitioning. And so I believe it was 2014, they were legally required to be sterilized before they were allowed to medically or surgically transition. So one of the studies I saw this weekend was the fact that they followed up with a lot of these patients to see what their thoughts were. Now that they see that in the more recent years, you don't have to do that and you have these fertility options. And while those patients, this is just from their brief presentation, I haven't read the full paper, I don't know if it's been published yet. While a lot of patients said they wouldn't change anything because they've become the person they always saw themselves and always wanted to be being able to transition, a lot of them still voiced it would've been good to have this opportunity. Like, now that I'm older and I'm ready to have a family cause a lot of, for them it was when they were in their early twenties when even somebody who cis wouldn't necessarily wanna be starting a family or thinking about starting a family. Some of them expressed anger, some of them expressed sadness and disappointment and that's what we're trying to avoid. And so being at the beginning of this, like you said, it's very exciting and there's a lot we can do to help people, but there's also a lot of sad stories too and we wanna stop those from happening. We wanna make sure that people can access the care that they deserve because healthcare is a human right. It's sad so by the World Health Organization. It's, like, my go-to line, but it's the truth. And this is part of general healthcare for these people. This is the standards of care is for people to be able to access that gender firming care to be the people that they are and move forward with their lives like anybody else would.
Rena: I think that's so beautifully said and you know, I couldn’t agree more.
Dara: So excited, lots on the horizon. I'm very excited for you to share this with more people bringing more awareness in this gap in care so we can really see some great changes in the future. So thanks so much for being on. Any last words that you'd like to mention or also letting us know when will this be out for the public to see?
Estevez: Sure, yeah so like I said, I've presented part of it at WPATH recently and then I'm gonna be presenting more at ASRM and after ASRM we'll hopefully have a larger publication that kind of brings everything all together into one document so people can see it. You know, obviously with all that data, maybe in the future we can team up with other people to make a database that's more publicly accessible. There's a lot of opportunities for growth even just within this one specific project, but until then there's lots of different resources people can use. UCSF has some great resources for transgender and diverse people, The Fenway Institute,WPATH, as I mentioned, they have the standards of care that are kind of the international standards. They've just released the most recent edition last Friday that's publicly available. So whether you are a GYN or reproductive endocrinologist, a surgeon, you can use that as a resource and a starting base and that has lots of references to a lot of the literature too if you wanna see the studies that are connected to whatever field of medicine. And then there's plenty of local clinics. So, finding clinics and people who are in your area that might specialize within LGBT care. That's a good way to get started. But I know everybody that I know within the field too who focuses on this is always welcoming of questions. So if there's somebody in your area who, if you're a medical provider and you have questions on how to really proceed with a patient or if it's your first patient and you wanna make sure you're doing things the right way, you can always reach out to people.
Rena: Can I ask, what is WPATH? You keep talking about that…
Estevez: Oh, I'm so sorry, WPATH, just cause Dara had mentioned it in the…
Dara: It's the world's professional association for transgender health.
Estevez: Exactly. So it's kind of like the international body that helps set standard guidelines for trans and gender diverse care. So the conference was just in Montreal and so people came from literally all over the world to come and discuss what these new standards of care are, what their research is, new steps forward and things like that. So it was very, very exciting to be with all those, those people from across the globe.
Rena: Oh that's wonderful. So you're super busy with that. And then ASRM?
Estevez: Yeah, it's a busy time for research, but it's a good thing to be able to talk with people and get everything out even if it's in a short amount of time. So I'm very, very excited to share everything and you know, get feedback from other people and figure out what our next steps can be to just make this a easier, better thing, not only for us as providers, but most importantly for our patients.
Dara: Well, we're excited to hear all about it and to share all this with our listeners, so thanks for being on and how we usually end our sessions are with words of gratitude. So Dr. Sammy Estevez, what are you grateful for today?
Estevez: Today I'm grateful obviously for being on this podcast, but really grateful to have had such a wonderful experience meeting so many amazing physicians and people and providers and more beyond that in the care team when I was at WPATH this weekend. It's an inspiring event and really has gotten me excited to keep going with my research. So grateful for the opportunity that I have at Mount Sinai and at RMA to be able to do things like that and help make the world a better place, even if it's a little bit at a time.
Dara: Beautiful. Rena?
Rena: Let's see. Today I'll say I'm grateful for learning. You know, I love this podcast, especially the next few episodes of recording because we're so lucky at RMA we have so many people doing research. That's one of the wonderful things about working here. And so, you know, to learn about people's papers and studies, I think it is fascinating. So I'm really grateful just for learning and growing and, and other people that are dedicated and devoted to improving patient care like Dara and myself are. So I'll go with that.
Dara: I will piggyback on that. I was actually gonna say something quite similar. Just yeah, grateful to learn new things every day. I think research is super fascinating and you know, it gets the conversation started on certain areas or certain gaps in information and education and it really does help people think differently and also build upon that. So, you know, with this one research paper to be able to say, okay, what have we found? And based on that, what can we do to discover even more? And like, you know, what are the great things that we found and what are some of the areas that we need to improve upon? And just the idea of hopefully you're exposing and informing and educating more people to hopefully also do similar research and maybe put all your heads together, get a great sample size and really, you know, see how we can improve our medical care for everyone. So thank you so much again and wishing you all the luck in the upcoming conference.
Estevez: Thank you all so much. It's a pleasure being here.
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 @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.