S7E14: Improving Health Care for Trans Patients

Laurel: Jane and I were watching "Firefly," the Joss Whedon show, today.

Hạ: Oh, yes, "Firefly."

Laurel: Have you seen it before?

Hạ: I am very familiar with "Firefly." I have seen it maybe multiple times.

Laurel: Maybe multiple times? Is it very exciting that Jane and I are finally watching it?

Hạ: It is very exciting.

Laurel: I don't want to spoil it for . . . I guess this is a reverse spoiler. Jane, did you also think that the mechanic died in the first episode?

Jane: Yeah, I absolutely thought that she did. She kind of had those vibes. I don't know.

Laurel: Yeah. And so Jane and I have spent years thinking that everyone is obsessed with her and she's only in two scenes, and then she dies. And it turns out that she's actually an essential character and has a backstory and continues to do stuff.

And so to get us kind of to the topic of the evening, which is transgender healthcare. Trans as in transgender, not as in transportation or other trans-related words.

Just to make the disclaimer that we're speaking from our own perspectives. And none of this is representative of the University of Utah or other institutions that my peers are affiliated with.

I think that I have talked to some extent about my trans identity already on the podcast. But for anyone who is unfamiliar, I identify as both a transgender individual and non-binary individual. I have used the term trans masculine for the past few years, and then I have also used the word trans masc or fairy prince.

I've described my gender as orbiting masculinity, but never quite landing on the planet. And I've also said that I have the same gender as Bugs Bunny, which is that I am a guy except for when it's funnier for me to be a girl. And my pronouns are they/he. And so that is my relationship to gender briefly.

Then we can talk a little bit more later about my experiences in healthcare, but I thought I would give y'all the opportunity if you wanted to disclose. Just talk a little bit about your experience with gender, relationship to gender, etc.

Jane, if you could maybe say who you are, because you are my sister and people have not met you before on the podcast. I think that that would be neat.

Jane: First of all, hello, I'm Jane. I am Laurel's sister. I have been living in Utah for a year or so. My pronouns are she/her. I am trans femme. I'm Laurel's older sibling and it's a bit funny that Laurel came out first years ago, whereas for me it's been a very recent experience.

Generally, I'd probably describe myself as a tomboy. I very much feel comfortable doing a lot of what I guess are stereotypically masculine traits, but it's like I want to be a girl while doing it. And I guess it falls into the tomboy area of wearing beanies, and alt music, and all that. It's been a pretty recent experience for me too. So a lot of it has just been so new.

But as a person who is trans, I can definitely talk about . . . I mean, pretty recently, like last year, I was in the hospital a lot and it's been a whole entire process of having to kind of navigate being trans. And not even that, but coming out as trans while going to the hospital a lot.

And I guess this is where I'll introduce the fact that I had cancer last year. I was diagnosed with cancer. It was rather ironic because I got testicular cancer. And so it was almost like my body was just shouting at me that I needed to get rid of my testicles so badly, that my body decided to do the hard work for me by giving me a tumor and forcing me to remove them. So that's pretty cool.

But it was funny because I was in the doctor's office, I want to say, maybe a month after I had gotten the orchiectomy. So I'd gotten the tumor removed, and by this point my egg had finally cracked, but I hadn't really come out to anyone besides extremely close friends. But I was in the doctor's office and they were taking my blood pressure.

I guess to preface, obviously going through cancer is stressful enough in and of itself, but not only that, my job forced me to change positions to a significantly harder department. And it was just incredibly difficult realizing that I was trans, and then moving to this job where all the clients that you work with are extremely, "Sir. Yes, sir," and having a voice that's so obviously masculine. I had done absolutely no voice training. I wasn't even out to anyone or ready to come out, but the gender dysphoria was very much alive and real.

And so kind of just throwing tiny little daggers at you nonstop. So many other personal things that were going on in my life, but it was just the wonderful straw that broke the camel's back that was me getting cancer.

So I was in the office and they were taking my blood pressure and they noticed that my blood pressure was just absolutely insane, like hypertension levels of high. And they were like, "Okay, what is going on? Why is your blood pressure so ridiculous?"

I was telling them, "I mean, obviously there's the cancer thing," but it was almost like I was just so stressed and I medically needed to address the thing that's been stressing me. And it's not that I felt like I was forced to come out, but it's more like I felt like I have all this stuff that's also going on in my brain and there's really just no way I can realistically keep on going without addressing what I was going through.

So I said, "Well, I am honestly just so stressed because I also think that I'm transgender." And immediately, they're like, "Okay, we have a counselor you can talk to and we want you to talk to them about all this stuff that you're feeling."

They got this really cool non-binary counselor. What they do for a lot of people that have cancers, they'll just have counselors for free. They'll just talk to you.

But this person was really cool because they were non-binary. They were trans masc and they were talking to me about, "Hey, if you think that you're trans, you definitely should be thinking about that. It'd be a great idea to talk to a therapist, but we're here for you. If you're serious about this, please don't run away from it because we want to help you."

They were just extremely encouraging and just giving me the little gentle push that I think I needed to address what was really going on in my mind at the time. Because at this point, I was very sure that, "I really think I need to do the process of getting on HRT." As soon as I was able to talk to that counselor, I think that so much of that part of things finally started to get set in motion.

Laurel: So I'm just going to interject. For anyone who is unfamiliar, HRT is a shorthand for hormone replacement therapy. The field is moving towards using GAHT, or gender affirming hormone therapy, for hormones used for trans and other gender diverse people.

And then hormone replacement therapy was originally coined as kind of supplementing endogenous hormones that people produce, if they're not producing enough of those. But either term is still used and used by some providers and by patients.

Speaking of providers and patients, Jane, I appreciate that you touched on both your experiences as a trans patient, but you also mentioned having a counselor who was non-binary.

And so one of the things I wanted us to talk about is how significant it is for folks like Hạ and me . . . I am of the opinion to be providing healthcare for people who either don't have our identity or who share all or fractions of our identity that we can touch base with at the clinic.

And so, Hạ, I was wondering if you could maybe talk about your relationship, your gender experience, as well as maybe how that's factored into your experiences doing clinical work.

Hạ: Yeah. So I use she/her pronouns. But one of the things I've been reflecting a lot about as I've been watching a lot of TikTok videos that people send and that people have been talking about is just thinking about how there are some people who very much identify with their gender.

And I'm talking about that from there are a lot of cis people who very much identify with their gender. But then there are a lot of cis people, like me, who have had the privilege of not really ever having to really think about what it means to say, "I have these pronouns. This is the gender that I identify with."

And so I want to always put that on the table, that for me, I say, "I have she/her pronouns," but it's never been a source of huge thought or question for me. It just has always felt appropriate.

So in all of that situation, however, I also do identify as queer, being particularly asexual and pan romantic. And in trying to really grapple through with my queer identity, it's made me think a lot about creating safe spaces and about concordant . . . what we were talking about with having more providers who have similar experiences, as having identity concordant care.

I think it's very helpful for kids who are . . . For instance, when I am working as a pediatrician, it's very helpful for a lot of kids and families. They appreciate it first a lot of times with language concordance or also cultural concordance or race concordance.

But then when you get to talking with adolescents and teens, I've noticed that it is very nice for kids. A teen often really likes to have a gender concordant provider, because he feels a bit more comfortable talking with another man than talking with me.

Or for instance, when I have my pronouns pins/badge and I'm very comfortable being able to talk about when you have crushes on people, what genders, and asking for pronouns, talking with my colleagues who are also queer and how they're able to be openly queer, it creates safer environments for people to feel safe to talk about things and for people to be willing to open up.

And so I think it is very important to have that concordance, which is why it's really important to bring a lot more people from different backgrounds and different reflections, especially the ones that haven't been present in medicine quite as much, because it creates safer spaces.

And it also just creates more spaces for us to be willing to have difficult conversations, particularly with gender affirming care, which is such a hot topic when we think about it in the whole healthcare landscape too.

Laurel: To add another kind of flavor to what you're talking about with concordance, I also think that there are benefits to having historically excluded providers even when identities are not concordant.

And the way that I am thinking about it currently is actually taken from the book "Butch is a Noun" by S. Bear Bergman, which I have been reading and highly recommend. A collection of essays by a self-noted butch author who talks a lot about gender and sexuality and how that influences the way that we navigate the world with other people and also how we conceptualize ourselves.

One of the essays talks about how the author, by being butch, is able to work oftentimes as a teacher or instructor in settings that cis men and cis women have sometimes struggled to occupy, specifically in the context of "troubled teen youths."

I'm trying to recall exactly the language, but it's something to the effect of those who might be inclined to have kind of challenges of masculinity with men and have more flirtatious approaches to teachers who are women ended up having a non-binary butch teacher who was able to reach them and have conversations with them in a way that the teens were receptive to.

And I think that that's something that I've been able to experience as a trans masc individual. I feel like I've had from a very different relationship, but even queer, cis women and girls, I feel like my queerness offers some amount of safety for them even if we don't share the same identity. Or other historically excluded communities, I think, can appreciate my perspective maybe in being a differently historically excluded identity in medicine.

I feel like even if we don't have patients like us, although we very much do, and that's something that I treasure, I also think that the same way that diversity of experience benefits any project or program, I think having queer and trans and all types of life experience and identity in a clinical setting just means that we have a wider net to connect with patients.

And so that's something that I have appreciated and been fortunate to recognize even with patients that don't share my identity, that they are able to connect with me in ways that are still, I think, beneficial to their care, which is the rhyme and reason.

Jane, do you want to comment maybe on some of the experiences you've had with providers who do versus don't share your identity?

Jane: Yes. So I wanted to talk a little bit more about that counselor that I had, what they did for me, and not only just being a trans person. Obviously, having that comfort of, "Okay, cool. You're allowed to be trans and just exist in the workspace," which I feel like should be such a silly thing to say, but unfortunately that's something that is somewhat hard to find in a lot of places until recently, I'd say.

The counselor helped me to essentially come out to everyone at the hospital. And their plan was just to let me know, "Hey, if you really genuinely are experiencing this, we want to make sure, because you have to make sure, A, that we do something about that insane blood pressure of yours. And if it's going to bring you an easier, more relaxed state of mind just to be able to be you, we should allow you to do that. So what can we do for you?"

And that was really cool because I felt like I was actually just allowed to explain myself. I was able to explain my pronouns and a name that I had chosen for myself. As soon as I told them, they said, "Okay. Well, let's put it on your account and people will see."

From there, every time they saw me, they made sure to be very respectful. A lot of these cis employees that worked there, it was . . . And I should say cisgendered people. They had a little bit of a harder time understanding, which obviously they can come from all sorts of walks of life, and so it's hard to say one reason why people may not either understand what I mean by wanting to change my gender.

There are some old folks who were actually very open-minded. Once I explained to them that I'm trans and that I am transitioning to be a woman, they understood. But it was an adjustment period for a lot of them.

The effort is absolutely appreciated. It always is. I mean, I always love it when someone who isn't trans is willing to understand and love and just serve me no matter what.

I will say, though, I definitely think that without that counselor who was non-binary, I wouldn't have had such an easy time, because it's just a simple fact, I think, that representation is important. I think that it's safe to say that I needed to have someone who was trans, who was willing to walk me through it because they've had that same experience years before. And so that allowed them to have the tools to help me.

And not just them, but afterwards I actually was able to find a different therapist I was able to talk to about all this and sort of develop a plan of whether to push forward with pursuing medical care for my transition, which obviously since then I've started my process of that.

But they were a trans man who was counseling me about my experience with being trans. And obviously, I'm not going to disperse anything that we said during our meetings, but it was a huge help for me because they had perspective.

It's also not just about representation, but I think that just having a trans perspective when you're helping other trans people, it really does make a world of difference.

Laurel: One of the things that you reminded me of is this stat that I'm pretty familiar with in the trans health research space, which is around a third of trans people have avoided medical care due to concerns of discrimination, as well as about a third of trans people report having to educate their provider about their own care.

These are things that we are always thinking about from the patient side of things. And yet when we have access to providers that are either sharing the experience of being trans or who are visibly committed to trans health in other ways, it means that you can maybe not have to educate your provider and maybe you pursue the medical appointment you've been putting off because you have a little bit more faith that it's going to go well. And that's something that I think is really significant.

Jane: Yeah, I agree. And the firsthand experience with me, I was really scared to even address the fact that I was trans, even though I knew that talking about it would genuinely help.

And then sure enough, over the next few weeks of my radiation appointments and chemotherapy, slowly, people started to respect my gender a lot more. Anecdotally, I had some who could see on my chart that I wanted to be referred to as Jane. And of course, they'd go out and say, "Mr. Hyatt, Mister, are you there, sir?" And so there's that side, which is always really frustrating.

But the people that understood who were the most respectful were the ones where I also . . . not only in terms of my pronouns, but it felt like they genuinely had my interests in mind. It just made it so much easier.

And my blood pressure did get better, coincidentally. Because it turns out having a better sort of mind helps just in general with your health. And so slowly, my blood pressure kept going down every single meeting until eventually they were saying, "Okay, thank goodness. It's no longer a problem anymore."

I really do have to chalk it up to just the fact that I felt like I could just kind of be me. And I think that goes to show that for trans people, having to just wear that mask all the time is always very difficult. But in a medical setting, it can be very exhausting.

Dealing with something like cancer is already hard enough as it is, but to not even have the peace of mind knowing that you're going to be respected for something that's completely not related to the illness that you have can be difficult. And it does make you hesitant to speak up.

Hạ: I feel like it's one of those things that is very unfortunate, because I feel like when we think about gender affirming care, a lot of people just segue it into its own little category, and people don't realize that trying to be very thoughtful, it has to . . .

There is gender affirming care itself, being able to do what Laurel was talking about, like gender affirming hormone replacement therapy or voice therapy and all of those aspects. Being gender affirming should actually go across all the board, across all different specialties, and across all different aspects of medical care. But a lot of people forget that.

And I think also there's a lot of misunderstanding and very problematic viewpoints within the medical community. So personally, I don't blame . . . it's hard to feel safe to exist in medical spaces. Even as I've gone through medicine, I've definitely had interesting comments made if you ever bring up any interest in gender affirming care or having that be a core of something that you care about.

Laurel: Yeah. I really appreciate you bringing up that trans-friendly, trans-inclusive care really is across all health specialties, because trans people have all kinds of health problems.

And so I think that people really do sometimes try to silo. If you mention trans people in healthcare, people are like, "Oh, hormones, surgery, voice training," and they kind of leave it to the people who are interested in those specific subsets of medicine to worry about trans people.

When in reality, from urgent cares to whatever level of subspecialty . . . I do pediatric medical genetics type stuff in my research, and we've had these rare disease cases of people who are trans, because wouldn't you know, trans people also get rare genetic diseases.

And so if you're not integrating best practices across all levels of healthcare . . . and that includes the people calling patients from the waiting room. That's a documented issue in the literature of patients being outed by poor practices.

It's something I spend a fair amount of time thinking about, because one of the points of my research is electronic healthcare records and how we can use it, like Jane said, to include people's medical history, their preferred name . . . Although even the phrasing "preferred name," it's the person's name, the name they want to be called by.

Having distinctions for legal sex and even what we consider sex assigned at birth or something like a body inventory for what organs someone has or doesn't have that we might want to keep in our clinical scope, these are all important and essential strategies. But at the end of the day, if someone doesn't want to do it, what good are all of those methods?

And so I think it sort of goes back to the education that is seen to be essential to all clinical practice, as well as the specific cultures and environments of the healthcare settings and what is viewed as the norm and what is permitted as snide comments or not.

Jane: And it's a bit of the fear that I would have when I had it put on my record that I was trans. At this point, my parents were somewhat still involved. And I say "involved" very loosely, but that's another story. But basically, I just didn't want my parents to know yet that I was trans.

I had actually asked the hospital, "Hey, can it please be on my record?" But I don't know how to ask the question, "Can you please not tell my parents? Can this be something where it's between the doctors and me?" Because that just genuinely helped me feel much more safe.

It's really a shame that it has to be that way. I think that's why there's so much conversation about . . . And obviously, with a hospital, there are HIPAA guidelines that refrain from disclosing information to people outside of who needs to know.

But I just wanted to briefly bring up how in schools it's become . . . Several laws have been introduced to essentially force schools to have to tell the parents of the child that they're trans in situations where people don't feel that their own parents are safe. And it's a shame that happens, but it really does.

For me, it became a situation where genuinely I felt much more safe. Even talking to my own parents, I felt less safe than going to the hospital. Even though I was going to the hospital to think about all the aftermath of having the cancer in my body, but even then, just having a place where I could feel safe, that I knew they had my best interest in mind even with accepting my identity, that made me feel so much more safe.

And I didn't want that safety to turn into an issue where people would find out that I was trans and then harass me for that. So that was its own fear.

Hạ: And I feel it acutely. In pediatrics, we do our own confidential screen where we are able to talk about it. Sometimes we have situational awareness where it's like, "If grandparent is in the room, use these pronouns. If this person is in the room, use these pronouns."

Even with pediatrics already having the confidential screen in place . . . and HEADSSS assessment is what we call it, where we ask confidential questions about home, sexuality, drug use. Even having that in place, when we navigate it, I still feel like sometimes it's not navigated well.

And I do think it all comes back into a lot of society and systems in place haven't really thought about these really important questions that for, I guess, the rest of society feel nuanced, but when you're living it, it's very obvious that these are safety questions that you have to think about.

But by not having that representation to bring up those questions and to think about it, we've built these systems that aren't really ingrained to be really thoughtful about it.

I believe a lot in people being able to produce . . . I believe in twofold, creating change through education with people, but also systems have to be created in place to protect people too.

Laurel: I totally agree with that. And I really resonate with the feeling that systems just haven't thought about it yet. I've been involved in what I think of as gender informatics, or how do we code gender variables. That factors into a lot of EHR data, and it's a big hot mess because folks tried for years with, let's say, Epic, which is one of the largest medical record companies, to have sex and gender options. Which is great and I would consider a success, but at a lot of institutions it was rolled out optionally or was only rolled out for specific clinics within healthcare.

And if the input for sex and gender can only be made accurate to someone's gender, if an entire clinic is committed to using this new updated software, then that needs to be either a universal rollout or an advertised rollout or people at the peripheral are thinking about these things. But then you find in practice, in the day-to-day application, things are not happening.

Similarly to using different language around family members, I've also seen a lot of requests with patients, "Can I have it be known that I am trans only with these providers and not with these other providers where that's not relevant to my healthcare?" But it's pretty difficult in most, if not all, current systems to rescind elements of the healthcare chart based on the clinic. There's just not that level of sophistication, in my experience.

And so it's something where day-to-day, person-to-person, conversation-to-conversation, you get requests or you see acute needs that there aren't really solutions for because the system at large is kind of calibrated to a very particular type of patient. That is frustrating and it leads to bad outcomes.

And it's one of those things where it's the inverse, I guess, of a rising tide raises all ships. When you have a limitation for trans people, you have a limitation in general. Because if you don't have options for body inventories, then it doesn't really matter if someone is trans or if they have a congenital absence of an organ or if they have surgical histories, etc.

Then all of a sudden, it's a nightmare because the administrative sex of the person . . . Like, their driver's license says male instead of female and it's just a random clerical error. That stuff can get messy with insurance and healthcare records, and we don't have flexibility in the system because we're not thinking about trans patients. But then it affects all patients who end up in these awkward paperwork-y puzzles of living.

I know I'm kind of ranting a little bit, but I think it's frustrating at the speed at which I see the healthcare field move in certain regards for certain specific sections of healthcare.

Jane: Yeah, I think that unfortunately you're very right in just the fact that society doesn't really think about the needs of trans people very much, and it bleeds outside of medical care. But unfortunately, a lot of those outside factors also affect medical care.

So, for example, my legal name, aka my dead name, is still on all of my medical records. It's just out there for everyone to see, and I just don't have the means right now to legally change my name.

There's just that lingering frustration of, "Ugh, I just wish it was easier," but things are very difficult for the process of changing the markers on your license, to change it on your birth certificate. And some states are different with their laws for how that process can happen for someone who is trans.

So, because of those difficulties, I think that trans people have a hard time knowing that if they go to the hospital, sure enough, they're going to see their dead name. It's going to be there on the chart and they're going to say it.

And it depends on where someone is in transitioning, whether someone either just started, if they're a little bit incognito and they're just not ready to fully be out, or if they are, but then the speaker says, "Kevin? Could Kevin please come up?" and then a woman in a dress comes up. I've been there and it's uncomfortable. It really is.

And it's frustrating because it's something that just has to do with society as a whole. They just have not caught up yet. It's just frustrating that rather than seeing any sort of progress, it feels like we're still spinning wheels on whether or not we can keep the progress we've already made.

Laurel: I wanted to close our conversation with a pie in the sky. We're talking about slow, incremental, step-by-step, one-piece-at-a-time change. If the two of you were given a magic wand and you could make one change writ large for trans health, what would it be? This is something I think about a lot because I like to be wishful.

I think that I would get rid of all prior authorization requirements on insurance. I think trans people have to jump through . . . Everyone has to jump through too many insurance hoops, and especially getting surgeries covered, getting gels as opposed to injections, all types of things. I may not be able to change everyone's mind, but I would love for everyone to have their insurance just go ahead and cover the stuff that they want. That's the world I want to live in.

Jane: For me, luckily, once I was ready to pursue getting my hands on estrogen, I went through . . .

Laurel: You say that like a heist. "Getting my hands on some estrogen."

Jane: Well, unfortunately, it feels like one. I mean, at least in America, and depending on the state that you live in, all you need is just a therapist diagnosis. Luckily, for me, I think it only took three visits before my therapist was like, "All right. I'm going to diagnose you with gender dysphoria, by the way." And I was like, "That's fair." Because of that, I was able to pretty easily get estrogen.

But you think about every single other country where sometimes there's a two-year waitlist you have to wait on just to even be able to be considered for it. I just feel like that needs to change. We need to stop with putting so many . . .

And obviously, making the decision for gender affirming care is a big one. It's not one that you should take lightly. So I absolutely understand wanting to have some guards to say, "Hey, are you sure that you want to make this decision?" Because it is a big decision.

But at the same time, I just feel like it's only hurting trans people when they know for sure without a doubt that they want to transition only to be told, "Well, the soonest you can get your hands on any affirming care will be at least two years. And even then, if you see a doctor who decides that you're making it up, LOL, then literally you're screwed." Doctor bias can absolutely play into limiting the healthcare that trans people can receive.

And so I just think that it should be easier to be able to be prescribed those life-saving forms of care, be it surgery or estrogen, which it saved my life. I can say that for a fact.

Laurel: And your blood pressure.

Jane: That's right. It did. Yeah, it did.

Hạ: Yeah, I was going to just sum up. I wish I could get rid of all the haters. But in all seriousness, it comes back to all of those barriers. And similarly, when I mention that gender affirming care is important to me, a lot of pushback I get, especially in the pediatric realm in particular where it's pretty contentious, is, "Is there enough strong, quality evidence available?" Really centering on evidence-based medicine, just focusing on really one weird aspect of the picture.

Even though, by the way, most of pediatric medicine isn't the most evidence-based because it's really hard to do really strong, high-quality, randomized control trials on kiddos. But we accept it anyway for everything except gender affirming care.

But it's all to say I get really frustrated by how a lot of these barriers are created by people who don't really understand the situations of these patients. And I wish that we could get rid of that and get rid of, in the words of former co-host Harjit, foo-foo-fah-fah of all of this academia and everything, and really just focus on the people and their stories and centering on that experience.

Laurel: Yeah, focusing on the people as opposed to the theoretical problems. I've heard the argument with all types of care from puberty blockers to surgeries, the concern about the level of evidence. But I think what frustrates me is we have evidence that repressing trans people harms them.

And so for me, there is strong evidence to pursue treatment, even if we haven't been given the resources to evaluate what aspects of healthcare are best for trans people.

I get really frustrated when people talk about evidence-based gender affirming care. I am thinking about, "Okay, how do we get our goal hormone levels with most comfort to patient and minimal side effects the same way you would think about really any healthcare setting?" And then there are people for which it is a euphemism of, "How do we get evidence to not provide this care?" Which is a difference in perspective mayhaps.

But I appreciate y'all very much for spending this time raging against the machine a little bit with me and sharing your experiences.

Encourage any listeners to check out @bundleofhers on Instagram. Listen to other episodes. You can find us wherever podcasts are streaming. And I will do my best to find magic wands so that we can make getting gender care easier and poof away the haters.

Jane: Hero.

Laurel: Thank you.

Hạ: Appreciate you.

Laurel: Anything for you two.