On July 1, Annals of Internal Medicine published a set of recommendations for providers to care for transgender individuals. Terri Wilder, M.S.W., sat down with the lead author, Joshua D. Safer, M.D., FACP, to discuss the impetus for the recommendations and his insight on providing care to transgender individuals. Safer is executive director of the Mount Sinai Center for Transgender Medicine and Surgery in New York City and professor of medicine with the Icahn School of Medicine at Mount Sinai.
Terri Wilder: So I'm chatting with you today about an article that's coming out in the Annals of Internal Medicine, entitled "In The Clinic: Care of the Transgender Patient." And it's really comprehensive. Congratulations on putting this together, with your coauthor Vin Tangpricha, M.D., Ph.D., who is with the Emory University School of Medicine in Atlanta. Why did you think that there was a need for this kind of guide for primary care providers?
Joshua Safer: The ACP [American College of Physicians] Journal Club, Annals of Internal Medicine, reached out to get a guide. So some of the impetus is from them, thinking that there is this need. But I share their opinion, which is that if one of the biggest barriers to care for transgender individuals is a lack of providers who feel sufficiently qualified or who are sufficiently qualified, then efforts to address that gap are important, including guidelines that are straightforward to follow for those providers.
TW: You and your coauthor spend a lot of time at the beginning talking about terminology and initial evaluation that goes into medical management. You cover transgender-specific surgeries, you cover medical, legal, and societal issues and practice improvement. And you talk about barriers to accessing appropriate and culturally competent care, and how that contributes to health disparities in transgender persons, such as increased rates of certain types of cancers, substance use, mental health conditions, infections, and chronic diseases. Can you talk a little bit about why there's these health disparities in this community?
JS: If people don't feel safe coming to medical providers, then when they have needs, those needs are not addressed. And that is a component of some of the health disparities suffered by transgender people. It's multifactorial -- we can go off into all the components, but just simply lack of comfort and lack of coming in for medical care when preventive care is required, or when things come up. And it's clear that it would be better to have some care, [or else lack of care] is going to have a negative consequence for people.
TW: You have this great box of common terminology, which synthesizes the information. And you talk a lot about the different terminology in terms of gender, sex, gender identity, transgender, gender expression, gender affirming, hormone treatment, and surgeries. One of the things that I wanted to talk to you about is this concept of gender dysphoria, and it being a mental health diagnosis. Can you talk a little bit more about that language?
JS: There are two problems with regard to language regarding transgender care. And one of them is that multiple groups have been trying to define things in different ways. And so part of our agenda was to simplify things by lumping terms that different people have used recently, that are essentially referring to the same thing, with nuances as to why people use those terms or not. But trying to make it easier for the primary care provider to see what terms go together, and what the key language needed is, which is far simpler than the long list of terms people sometimes put into documents. And speaking specifically to gender dysphoria, the big change in conventional medicine, in terms of the approach to care for transgender individuals, is the switch from thinking of being transgender as a mental health concern with mental health interventions, to a disconnect, essentially, and incongruence, whatever term you want to use there, between what is a biologically coded gender identity, which people have recognized as a biological component, and other visible anatomy. And then, how do we in an evidence-based way address that disconnect?
When we were viewing this as a mental health concern, [we used] mental health language, which has multiple negative elements. One is that it leads to a line of thinking and a line of potential treatment considerations that are not logical and don't make sense and don't fit how we understand the situation based on current data. And the other, depending upon where you live in the world, is that it affects who is supposed to care for you, and how reimbursements are made and such. And so switching the language to match more how we understand the science now is important. And when we're specifically referring to gender dysphoria, [this] is a holdover diagnosis. In fact, once we say this is not a mental health concern, then the entire term gender dysphoria stops making any sense. Because in a mental health world, they talk about clinical dysphoria when people have various stresses, and mental health approaches to that reality if that dysphoria rises to the level of a mental health concern. And transgender people shouldn't be obligated to suffer a dysphoria in order to have some medical interventions.
TW: Let's jump into the initial approach for providing care for transgender patients. When a new patient comes to you, what are some of the first things that you do in terms of a medical visit?
JS: When somebody first comes in, the first questions relate to determining if they are or are not transgender. And if they are, if they want medical intervention, then the next questions are really typical, complete medical history questions, making sure or learning about what other medical concerns might exist or might be in the family that might be relevant for treatment decisions. And then also, learning about fertility interest, because a typical treatment, for transgender individuals can have varying degrees of impact on fertility, including complete destruction of fertility. And then also learning what the goals of therapy from the patient's perspective might be. And that would help guide the conversation about whether we're talking about hormone treatment, or surgeries, or some combination, or what order might be logical, etc.
TW: Let's talk about hormone therapy -- what is the role of hormone therapy and care?
JS: Well, the central theme is individuals trying to make their body more aligned with gender identity. That's the usual reason for medical intervention.
And what we do is to manipulate testosterone level. The big difference between men and women in terms of hormones is testosterone level. Estrogens are fairly similar. People sometimes think of it as a tension between estrogen and testosterone. But that is not true. It's really taking testosterone up or down. And the medications that are used have certain risks that need to be considered. Essentially, these are safe interventions. But nonetheless, they're not absolutely risk-free. And there also needs to be some thought about maintaining some sex hormones in someone.
TW: So do the hormones that are prescribed come in different preparations? Or is it always a pill?
JS: For transgender women, there's a range. We have pills, which are very convenient. We have patches, which don't deliver as much medication, but are considered potentially to have a lower clotting risk, although it's not known if that's just because they deliver a lower dose or because there's actual increased clotting risk from taking pills and having the medication pass through the liver. There are also injections for the adjunct medication to lower testosterone. We mostly use pills, something called spironolactone, which is a low blood pressure agent in the United States. And there is the possibility to block hormone levels entirely. And then kind of add back estrogen as a strategy. And that's something called GnRH agonist or puberty blockers, and we give it to kids. And that's actually an alternative for adults too, that's not much used, because it's more expensive. And because it's an injectable. For the trans masculine, it's really just testosterone -- and testosterone pills caused liver concerns years ago and were discontinued. So the existing safe agents are injections and gels. There are a couple of patches that are not popular for various reasons, one that goes on the skin and one that goes on the gum in the mouth.
TW: What is the difference between providing hormone therapy to an adult versus a kid?
JS: Well, one thing that's important to recognize is that there isn't a hormonal difference prior to puberty. So there's no medication required prior to puberty, and nobody needs to be nervous that we're medicating little kids. And then at the same time, this whole shift [has happened] in terms of how we think about gender identity as having a substantial biological component, which is something that's pre-programmed, and that we can't be manipulating, reliably, externally. And the other side of that -- the fear that if we allow gender expression, [for] children to express themselves, that somehow they'll be brainwashed -- seems unlikely. If this is a biological phenomenon, it is what it is, and they will do what they will do. And if they are gender expressive, and not transgender, then they will follow some pattern along those lines.
And alternatively, if they are transgender, then it's okay to allow them to express themselves at young ages, but there's certainly no medication that they need to be given. As we move along to puberty, well, then we have a situation where people would have a puberty that they would not want. So if we have a kid who has identified him or herself as transgender, then we can take advantage of that information, to use that regimen to essentially delay puberty until they're at an age where we're confident that they're transgender. And we can actually begin the sex hormone therapy.
TW: So when a patient starts hormone therapy, what would be important to monitor while they're on them?
JS: For testosterone, it's really easy. We want to check the levels to get some perspective that we're giving the person the right dose. If somebody complains that they're not seeing an effect, and then it turns out that they're underdosed, well, that's silly -- we should be getting them into the correct dose, and we want to be checking testosterone. And on the other side, there's no need to be overdosing them, where it's unclear that there will be any benefit. At the same time, the testosterone stimulates red blood cell growth, that contributes to stamina and such, and that's part of the reason why athletes use it -- and not just for muscle. And the concern there is if that growth gets too high, we measure it with something called hematocrit, if that goes beyond 50%, then that could be a cardiovascular risk. What we do with the trans masculine regimen is we follow hematocrit and make sure it stays in a safe range.
For the trans feminine regimen, the levels are also testosterone, because like I said before, really we're doing testosterone up/testosterone down. And so that's what we use to see if we're at goal or not, we might check estrogen levels, which is the estrogen we're able to measure in a quasi-reliable way, just to make sure that we're in the ballpark, not way too low or way too high. And then, if we're using spironolactone like we do in the United States as the adjunct to lower the estrogen dose, then we do need to check their potassium, because for unlucky individuals, spironolactone can cause their potassium to rise. Your potassium needs to be in a very, very narrow range to be safe. And if you're one of those unlucky individuals, it does affect how we treat you.
TW: In the document, there is advice about encouraging your patients to stop using tobacco. Can you talk a little bit about why that's important?
JS: It's always important. No matter what your circumstance, it's always good to stop using tobacco. It's just a general good health thing.
But people are nervous about the blood-clot risk of estrogens -- in fact, so nervous that we are intentionally giving them other medicines, [and] we can give them lower doses of estrogen to have the same effect. It becomes kind of silly to let sit there potentially even larger causes for blood clots, like tobacco.
It's a convenient, high-pressure time to tell people to quit, with some data suggesting that this is a time when people are undergoing an important life change. And it's a time where quitting smoking is so difficult. This is one of those times when some people are more able to do it. But it is a good opportunity to get somebody to a healthier situation. And I'll say this: if estrogens increase your blood-clot risk. But I know it's not an enormous risk. And smoking is an enormous risk. So if I get a transgender woman to quit smoking, she can take pretty high-dose estrogens. And I'm sure she's actually got a better risk profile for clots going forward, to a substantial degree.
TW: Can you talk about if there are HIV-related issues that are specific to caring for transgender patients.
JS: With regard to HIV and transgender individuals, there's a bit of attention, because on the one hand, transgender individuals are over-represented among people who have HIV, to a huge degree. And we think it's mostly neglect for care, poor treatment by society, putting people in economic distress, getting people into situations where they are in unsafe situations or taking [more] risk than they otherwise might. Therefore, more of them have more risk for HIV than we see among non-transgender individuals. So we really want to have that high on our list of things that we're addressing and screening for and treating, because it's, unfortunately, a too common reality.
The other side of it, though, is that being transgender is not necessarily an HIV risk factor. In fact, we have many transgender people who are being very, very safe in their behaviors and are at no greater risk for HIV than anyone else. And therefore, we want to be careful about not stigmatizing transgender people and saying, "Just because you're trans." worrying about these things that might not apply to that transgender individual. I think part of the language I like to use, specifically, is to refer to transgender individuals as individuals, as opposed to suggesting that there's some population of people who are all doing the same thing.