Frances Hayes, MBBCh, BAO: Supporting Transgender Patients Through Multidisciplinary Care

For transgender people, finding healthcare providers knowledgeable about their unique needs can be challenging. For those who choose to transition medically or surgically, it is often a journey that takes months or even years as they find a path forward that is appropriate and comfortable to their individual needs.

One essential component of care for many transgender individuals is hormone replacement therapy to help the body align more closely with their gender identity. Dr. Frances Hayes, the Associate Clinical Chief of the Endocrine Division at Mass General, has worked with transgender patients for many years to provide this care. Today she is helping helm the Transgender Health Program, which provides comprehensive primary care, hormone management, case management and connections to behavioral health and surgical services at Mass General.

AMY WICKS: So welcome, Frances.

FRANCES HAYES: Thank you.

AMY: I wanted to start off talking a little bit about your day-to-day as an endocrinologist. I know for me, it’s a specialty I've heard of, but don’t know a lot about, what is the day-to-day like in endocrinology?

FRANCES: Sure. So endocrinology is a subspecialty of internal medicine, which essentially deals with hormone disorders. So you can have too much of a hormone, too little of a hormone. And those are the types of patients that we manage. So, from a practical standpoint, it would be conditions like menopause, problems with the thyroid gland. And, of course, recently, we've become very involved in the hormonal care of transgender patients.

It’s largely an outpatient specialty. So most of my time is spent in the outpatient clinic, seeing patients, following up with results.

AMY: What kind of symptoms are people with endocrine problems usually displaying?

FRANCES: It really can vary a lot. I guess a lot of the patients we see have a referred, because they think they might have an underactive thyroid. And those symptoms that really bring those patients to clinical attention would be things like difficulty losing weight, fatigue, constipation, difficulty concentrating, symptoms that you and I probably have had more than once, and they're very nonspecific.

And so the rule of the endocrinologist is really to take those symptoms in consideration, and then do the appropriate testing to decide if the patient is indeed suffering from an underactive thyroid, or if it could be something else.

AMY: And how did you end up in this specialty, rather than something else?

FRANCES: When I was in medical school in Dublin, where I'm from, I was very influenced by a mentor there who was a very prominent endocrinologist. And just his way of teaching, and his enthusiasm for the specialty was really what got me involved.

And it’s a specialty where you can form long-term relationships with patients. You know, a little bit like primary care in that respect. There are patients that I've seen for years. Sometimes they’ll then refer their husbands or their kids for other issues. So you really get to know your patients and their families well, which is really nice feature of the specialty.

AMY: Were there any particular experiences with that mentor that you think of as kind of that was the moment that you knew?

FRANCES: You know, sometimes when you start medical school, and you go from one rotation to the next, and you go from deciding you want to be a rheumatologist to a gastro, you know, whatever the current flavor is. But I think that’s something that I kept on coming back to. I’d flirt with the idea of doing something else, and at the end of the day, it was always—I think when I realized it,  was when I was studying for my finals in medicine. The topic that I would always go to first was endocrinology. And it’s like what you are, what you most enjoy, what you're most familiar with, what comes naturally, that was always that specialty.

AMY: I know, now, a good part of your practice really is focused in care for transgender patients. So how did you transition from general endocrinology into transgender care?

FRANCES: My subspecialty is reproductive endocrinology. So there, you're really focused on the reproductive hormones, estrogen for women, testosterone for men. So it was a very natural progression, given that background, that the caring for transgender patients would be part of my clinical practice.

But I guess it really started with a patient who was an MGH employee, and was admitted to the hospital with complications from hormone therapy. She had been receiving care at another center. And she was quite sick. And her care maybe hadn't been ideal. And at the end of it, she said, “You know, I want to transfer my care to Mass General.”

And I said, “Well, we don’t have a transgender clinic.” And she said, “Well, why not?” And that was really, she was absolutely right, why did we not have a transgender clinic? And this was back in 2016. So prior to that, I had seen a handful of patients. But you really need a proper multidisciplinary clinic to take care of these patients most effectively. And we didn’t have it.

So the patient was really the one who started the conversation within the hospital. And a group of us met, you know, once a month in the dungeons of the hospital, for quite some time, to try and get it into practice.

Dr. Robbie Goldstein in Infectious Disease was really somebody who drove this whole initiative. And I think we were lucky we had support from Dr. Armstrong as the Chief of Medicine, and the senior management of the hospital. Everybody thought that this was really an important initiative to get going. And it took time. Obviously, you had to get buy-in from all of the other specialties. So there's general medicine. There's us in endocrinology. There's pediatrics, psychiatry, surgery. But everybody did express their support and enthusiasm for the clinic. So we were delighted when we actually opened the clinic in January of this year.

AMY: It’s so exciting to see that come together, where it really truly is a multidisciplinary space with so many different clinicians collaborating. So going back to the beginning, you're in these sort of ad hoc meetings. What was it like to sit down and build out a vision for something that didn’t exist before?

FRANCES: It’s something I’d never done before. And you're kind of thinking, really, at the very basic level, what do we need to provide a comprehensive clinical service to patients that want to undergo transition? And you know, it was literally at the drawing board, you know, thinking, who do we need? How much space do we need? How many providers in each specialty? How do we design a website? You know, how do we get people in the door?

And quickly you learn that, you know, once you have one or two patients, word of mouth in this community is really the best way to publicize your clinic. We had the benefit of looking at how other centers, both locally and across the country, had set up their clinics. So we were able to learn from their either successes, and sometimes failures.

AMY: For patients in the clinic, what role does endocrine play in their care?

FRANCES: For many patients, it is an important part of the transition, where the goal of hormone therapy is really to induce those physical characteristics of the gender with which they identify. But not every patient who has gender identity disorder will seek hormonal care. So we’re there to provide care to the patients who either want to discuss it as an option to consider, or who have already made that decision and are really ready to start hormone therapy.

AMY: What do you like about working with this patient population? It seems to me it’d be very rewarding to be able to do this kind of work.

FRANCES: It is. It’s immensely rewarding, I would actually say. For many decades, this has been a very underserved population, sort of neglected by society. People were afraid to come forward. You know, compared to people that do not have issues with gender identity, their use of medical services was very low.

So it’s really nice, now, to be able to provide a clinic that provides gender-affirming care, where someone can feel comfortable, in a nonjudgmental environment, and –and get the care that they need and deserve.

AMY: Yeah.

FRANCES: And watching someone go through that physical transition is really rewarding. I have one patient who I first saw when she was 59, and was born as a genetic male. But had always struggled. And only when she was in her late 50s did she decide, “You know, I'm going to bite the bullet and—and—and start hormone therapy.”

And just watching her at each clinic visit, as she underwent the transformation, that she always sought, was—was really gratifying. She would come in and take a photo with me at each visit in clinic. And you know, her phrase was, “I want to look on the outside the way I feel on the inside.” And I think that, you know, really sums it up perfectly for a lot of these patients.

AMY: That’s amazing. I can only imagine, you know, watching someone transform—I mean obviously, physically, but you can often see what's happening on the inside, on the outside.

FRANCES: For sure. It’s hard when your physical appearance doesn’t match your gender identity. And you can dress like a woman, but until you kind of go through those physical changes, it’s hard. And I think the biggest one of the other important things is to be recognized, as the gender that you identify with by other people.

AMY: Yeah, absolutely.

FRANCES: And that’s really affirming, I think.

AMY: Have you seen the patient attitude or approach change as a society, have shifted monumentally in the last couple of years.

FRANCES: I think, you know, it’s interesting. I had a patient recently who I had been seeing, a male patient I had been seeing for osteoporosis, so something completely unrelated. And I had been seeing him for about a year. And then one day, he came in, and he was wearing a skirt. And I didn’t really say anything.

And just, at the end of the visit, I said, “Oh, is there anything else you’d like to discuss?” And then you know, it came out that yeah, he’d been, you know, struggling a little bit with his gender, and, you know, had heard about the clinic, knew I was involved, and wanted to consider hormone therapy at that point.

But I think, you know, five years ago, that conversation would probably not have happened. So I think as the general public has become more accepting, and I think as physicians are more clued in and open to starting that conversation, you could have just ignored it and said, “Okay. Your osteoporosis is fine. You know, see you in a year.”

But we do have an opportunity. And I think as physicians have become more comfortable with treating patients who are seeking hormone therapy, that’s—that’s also helped immensely.

AMY:  I've read that one of the challenges as a patient is often that you're talking to doctors who really aren’t familiar with the things that you're going through. And they don’t know how to approach care. And so it does get ignored.

FRANCES: Yeah.

AMY: So how do we go about broadening the knowledge of the establishment?

FRANCES: Sure. I think that’s a key question is, you know, educating the medical community. And that starts at the lowest level. It starts in medical school. And now it’s an important part of the curriculum. And Harvard Medical School has invested a lot in making the school welcoming to a diverse range of students.

We give a course each year, the Harvard Postgraduate Course in Endocrinology. And about three or four years ago, we had feedback from the physicians doing the course that they wanted the care of the transgender patient to be included in the curriculum.

AMY: That’s great.

FRANCES: And so we now have that as a key talk at our course. It’s in the curriculum for the fellows. I've had requests from medical students and residents to rotate through the clinic, so they get a sense, sort of firsthand, of the issues. And it’s not just the medical care, but it’s, the appropriate use of pronouns, and knowing what the topics are that are likely to be most relevant to the patient.

AMY: Do you think that population will grow as, maybe people before, there was that confidence gap. And now, if you, as a younger person, can grow into yourself, and have the confidence to pursue the more high profile professions?

FRANCES: Yes, I definitely do. I mean I think even, you know, I have a middle school kid and a high school kid. And their acceptance and tolerance of all kinds of people is so much broader, that I think, you know, they're used to having transgender kids in high school. And I think it’s not going to be this sort of blow to a career that it could have been in times past.

AMY: Yeah.

FRANCES: I think society is much more accepting.

AMY: Yeah.

FRANCES: And embracing of diversity in general.

AMY: Yeah, and this is just another branch of that.

FRANCES: Right, exactly.

AMY: You mentioned, before, this concept of gender-affirming care. Could you talk a little bit more about what that looks like in practice?

FRANCES: Sure. I mean so it’s, the issue that we’re addressing is when the gender with which someone identifies is not consistent with their sex at birth. And so for an individual patient, if it’s somebody who wants to transition from male to female, the physical characteristics that are generally most important are breast development, changes in body composition, reducing body hair. So the very features that, when you glance at somebody on the street, you make a quick check in your mind, is that male or female.

And so hormone therapy is a key part of that. Sometimes you can use laser or electrolysis to deal with hair removal. And surgery, obviously, ultimately, can play an important role in changing the contours of the face to make it a more sort of traditionally feminine-appearing face.

When you're going the other direction, from female to male, from a hormonal perspective, it’s actually a little bit easier. So when you give testosterone, the goal there is to cause an increase in body hair. You’ll also see changes in the voice. You’ll see changes in body composition and a reduction in breast size.

But, you know, with any hormone therapy, there are desirable effects and not so desirable effects. So when you put someone on testosterone, particularly if you increase the dose too quickly, you can get negative effects, like acne. You can get thinning of your scalp hair. So if you think back to when, you know, for boys that go through puberty, it’s not always their most attractive phase. So you want to, you know, alert patients to the fact that there may be some issues that they did not seek, that are, you know, part and parcel of the treatment.

AMY: And I imagine, with any medication, you don’t know exactly how it’s going to affect any individual.

FRANCES: Absolutely. And you know, it also depends on their overall health and their medical history. You know, if you have a patient who has a predisposition to a blood clot, either because they smoke, or they have a family history of a clotting disorder, or they're very overweight, those are all factors that play into how much estrogen you would be comfortable giving that patient, and what route of administration you would choose, whether you would give estrogen as a pill, or give it as a skin patch, where the risk of a blood clot is significantly lower.

Those of us who take care of patients who have gender identity issues, you’ve got to see the whole patient. It’s not just the hormones, it’s how will the impact of the hormone therapy I'm starting the patient on influence their diabetes, or their blood pressure?

So that’s why primary care is very important. But also, I think when people run into problems with side effects from hormone therapy, it’s because they don’t take the whole picture into account. And because it’s a relatively new field, we don’t have the kinds of big clinical trials that are available for the general population to guide us.

So you’ve got to be, you know, cautious and prudent. And sometimes it’s like when you decide you want to get pregnant. You want to be pregnant tomorrow. Patients who decide that they want to make the transition may also want the changes to occur quickly. And so you want to really have a discussion where you explain why that might not be the best thing to do. Because the goal of treatment is certainly to induce the physical characteristics, but to do so in a way that’s safe and doesn’t expose them to unnecessary risk.

AMY: You mentioned there aren’t a lot of studies and trials within this population. Is that something that’s starting to change as more physicians are becoming more knowledgeable and more programs like the one at Mass General are opening?

FRANCES: I hope so. There is still a lack of particularly long-term studies. And most of the literature that we have comes from Europe, actually, rather than from the US. But it’s using forms of estrogen that we don’t tend to use anymore, which were more likely to cause blood clots than the sort of natural estrogen, estradiol, that we now use.

So I think going forward, it really is important to have a good database on the patients that you're seeing. And to be able to document negative outcomes. And so this really does require collaboration with different centers across the country, to really have the numbers of patients that you need to do proper outcomes research.

AMY: And are there things that set the program at Mass. General apart from others, either locally or nationally or internationally?

FRANCES: Well, we’re still in our in relative infancy. But I think, you know, as the goal, I think, of Mass General’s clinical mission in general is to really provide excellence in care, and to be able to inform optimal patient care by doing research. So that is really part of our mission.

And we do hope, going forward, as we expand, and we have more hopefully funds at our disposal, to be able to have research coordinators, to help us to do proper studies, Being able to enter all of the kind of baseline parameters on our patients before they start treatment, and then to document over time what the implication, or what the impact of the different hormone regimens really is.

And try and decide what's optimal, both in terms of dose, both in terms of the rate at which you adjust the hormones. There's so much that’s really unknown.

AMY: When you either both working with patients, working with colleagues, talking with people out in the world, are there common misconceptions you encounter about the work that you do with these patients?

FRANCES: Yes. I would say so. Although I think it’s probably changing. But I would say some people that think that this is a choice that the patient is making. And when you see the struggles that some patients have gone through, you know, it’s never a path that I think you would choose if you didn’t feel compelled to do so, because it’s not an easy path to take.

It’s certainly getting easier, but I have a number of patients who were teased and bullied in school. The incidence of depression and suicide attempts is very high. It’s a tough course. So the idea that anybody would choose to do this as sort of a fad or something that’s trendy, I think is something that just is not supported by the types of patients that I see.

I think sometimes patients confuse gender identity and sexual orientation. And so, you know, and the two are not necessarily intrinsically linked, and I think as—as this sort of field emerges, I think people are beginning to understand that not everybody identifies as necessarily male or female, and there's many individuals that object to that kind of classification. And I think some people find that concept hard to accept. But I think as attitudes have already changed in the last decade, I think they will continue to change over time. And I think we’ll see even greater acceptance.

AMY: I think about this sometimes. I think we’re going from having this binary male/female to more of a spectrum perspective gender and presentation. And I'm always curious whether, you know, it’s the pendulum shift right now, where we were on one side. We’re way over to the other side. And I wonder if down the line we’ll settle into a place where people feel more comfortable living in between, and don’t feel like they have to align with one end or the other.

FRANCES: Yeah. I think that’s very valid. I think there can be a lot of confusion, as well, in adolescents, as to whether they truly have gender dysphoria or not. And so, you know, sometimes you’ll have kids, girls who sort of identify as being tomboys. And in the past, that’s just what they would have been considered. And they’d have gone through puberty, and the things would have been fine.

Now I think there's so much kind of heightened awareness, that parents get nervous, almost, if their daughter wants to play with her brother’s truck or whatever. And there's a lot of controversy about whether it is appropriate to prevent puberty in kids.

For some, it can be a very traumatic experience, and so some centers are now giving these puberty blockers, these drugs called GnRH analogues. And others feel very strongly that this is the wrong approach, and that there's not enough data to support that. And so you’ve got people coming down very strongly on either side of that debate. I don’t deal with that age group. But I think that’s a tough call for a pediatric endocrinologist to make. And it’s something that I think has to be made on a case-by-case basis until we have longer safety data on that approach.

AMY: Yeah. Is there advice you would give to a parent whose kid is in that space of discomfort?

FRANCES: Yeah. I think one of the key things is to keep open the lines of communication, because you know, as a parent of two boys, you realize how, you know, you might disagree with them, and have discussions where you have very different opinions. But that’s so much better than having no communication where they go to their room.

And so in the last several years, I think we probably all know families where someone in the family has transitioned. So I would encourage parents to talk to—to other parents, or to talk to the child’s pediatrician. Because sometimes it is a passing phase.

And, you know, it’s a balance between overreacting, or being judgmental. And then, I think it’s important to be supportive. I'm not saying it’s easy as a parent when you’ve brought up a kid, and you’ve called them by a name and certain pronouns for, you know, 10 or 15 years. And now, suddenly, that’s changed.

And, you know, I've had parents call me, and, you know, they're very distressed, or they're in the room with their son or daughter. And they're trying to be supportive. But you can see what a struggle it is.

AMY: Yeah.

FRANCES: And I can definitely empathize with that.

AMY: It’s difficult on both sides.

FRANCES: Yep. I had a patient today—I was asking whether her family were now more supportive. And she had cut off contact with her family, but sort of reengaged with them at a funeral recently. And she was just saying how they’ll now use the name that she’s chosen, but they consistently get the pronouns wrong.

AMY: Yeah.

FRANCES: And I was saying, “You know, sometimes, you know, cut people some slack, because they try. But you revert to what you’ve, you know, called somebody for a long time. And it’s hard to break that habit.”

AMY: We talked about kind of getting a patient into the transition process, and through it. What about the other end? What does that look like? What does it feel like? I imagine there's excitement, but there's probably a lot of other things that happen.

FRANCES: Yeah, I mean I would say that for most patients, it’s very gratifying. I certainly have not had a patient who regretted that decision. And I think I would say probably all of my experiences so far have—the patients’ experience has been very positive. But it’s something that requires ongoing care.

It’s like a woman who’s gone through menopause, who’s taking hormone therapy. You have to have your mammogram. You know, you have to have your blood pressure. You know, there are ongoing health screening issues that are important. And I think one of the key things is to not have the patient self-medicate. And before there was sort of formal transgender clinics available, some studies suggested as many as 50% of patients were getting access to drugs, to hormones, sort of through other non-prescribed sources.

And so particularly in patients who want to see changes quickly, and may be not as happy to do the kind of slower approach, you want to make sure that that—that doesn’t happen.

AMY: I'm curious to hear you talk, too, about the social piece. As a person transitions, and becomes this person that they felt inside. We talked about looking on the outside the way they feel on the inside. And you know, what does it look like from your perspective to watch that happen?

FRANCES: Well, it’s funny. Sometimes, you know, when you call somebody in from the waiting room, if you haven't seen them for sometime, you know, you can almost do a double take, because you know, sometimes the changes are dramatic. The intrinsic personality doesn’t change. And, you know, once you start talking to the patient, you realize, you know, that part hasn’t changed.

They may be, as I said earlier, more confident now that their physical appearance is sort of catching up with the way they’ve always felt. The other thing I would equate it with, as a reproductive endocrinologist, I help patients to get pregnant. And they sort of, when you see that positive pregnancy test, that’s the other thing that gives you sort of a buzz, in terms of some feeling that you’ve really made a difference in someone’s life.

AMY: Are there any other patient success stories that you kind of keep as touchstones or inspiration?

FRANCES: It’s probably a patient I've treated for the longest time, because ever before, we had a, you know, a formal clinic, I've probably been treating this patient from the time I was a fellow, actually. And that was a while ago. But this particular patient, was a male to female transgender patient, had a condition that would increase her risk of a blood clot.

And so the ideal treatment for that patient is to give an injection that would lower the testosterone level, and then you could give back a low dose  of estrogen. Her insurance kept on denying this medication because it is an expensive injection. So over the years, we could only give her, you know, a low dose of the medication. And really, even though she was very patient, the physical changes really were not to her satisfaction or even to my satisfaction.

And then the last time I saw her, which was six months ago, her insurance had finally agreed—they didn’t cover the medication, but they would now cover surgery. So she was just coming to me to get, you know, a supportive letter for this procedure, an orchiectomy. But, you know, this was something that she had fought, you know, and we had fought unsuccessfully, for a long time. And now finally, it was about to happen. So this would allow us to just ramp up on her dose. And she was just so, so thrilled on that particular visit. It was so nice to see.

AMY: Yeah, that’s wonderful.

FRANCES: So sometimes the perseverance—

AMY: --yeah, pays off.

FRANCES: Pays off. Mm-hmm.

AMY: One last question. Thinking about people who want to be allies to this community. What advice do you give to people?

FRANCES: I think it’s great for people to be as supportive as possible. Obviously, there are opportunities when it comes to legislation that not to be supportive of—of legislation that discriminates against transgender individuals. In general, I think we should all try and make sure that our workplaces, whether it’s a hospital or an office, is—is welcoming, that there are some gender-neutral bathrooms.

And that our use of language, you know, I think an important part of the education of staff at a hospital is correct use of pronouns, so that there are no embarrassing mischaracterizations of patients. I think that’s something that’s very difficult. And, it keeps the patient from returning.

AMY: Well thank you so much, Frances.

FRANCES: Pleasure.

AMY: Wonderful talking to you and learning more about the clinic. Before you go, I have my final five questions. What's the best advice you’ve ever gotten?

FRANCES: I would say the best advice I ever received was actually from my endocrine mentor. And he said, “Go to the US to pursue your subspecialty training.” Because at that point, I was debating whether to go to London, which was obviously much closer. But he was American-trained, had a great experience here. And I did follow his advice, and certainly it was good advice.

AMY: You're still here. What rituals help you have a successful day?

FRANCES: A glass of wine with dinner.

AMY: Any particular variety?

FRANCES: I am more of a Malbec person.

AMY: How do you recharge?

FRANCES: I would say my kids help me to recharge. I think no matter what day you’ve had at the hospital, my son usually travels home from work with me. And I think having that opportunity to hear about his day in the car going home, and forget about what were the things that drove you crazy during the day, can be helpful.

AMY: Great. If you weren't a doctor, what would you be?

FRANCES: My second choice was a lawyer. But I'm not sure if I would have made a great lawyer. And I often think, yeah, but would I have been happy doing something else? But I always come back to the idea that on my worst day as a doctor, I think I'm still happier than I would be doing anything else.

AMY: What advice would you give your younger self?

FRANCES: Don’t feel that you have to excel at everything at the same time. I think particularly for women in medicine, there is this conflict between advancing your career and starting a family. And you know, there's no doubt, when you have children, your productivity, in terms of academic advancement, takes a hit. And that’s okay.

And I think you have to be at peace with that. And one of my mentors here used to say perfection is the enemy of productivity.

AMY: Well that concludes our discussion. So thank you so much, Frances.

FRANCES: Oh, it’s been my pleasure. Thank you very much for having me.