Issue: May 2017
April 03, 2017
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Care for transgender children starts with affirmation, safety

Issue: May 2017

For transgender children, the experience of being identified and socialized as a gender that is at odds with their self-identity is often confusing and traumatic. Assumptions and expectations about a child’s gender — and the behavior ascribed to that gender — are often based solely on outward appearance, according to a presenter here.

Stephen M. Rosenthal, MD, program director for Pediatric Endocrinology, and co-director of the Disorders of Sex Development (DSD) Clinic at the University of San Francisco’s Benioff Children’s Hospital, told Endocrine Today. “You can’t see somebody’s gender identity. The only way you can know someone’s gender identity is when they tell you what it is.”

Stephen Rosenthal
Stephen M. Rosenthal

This discrepancy is compounded when a transgender child enters puberty and develops even more of the external signs of a gender that feels alien to them. This can lead to gender dysphoria, which is often accompanied by distress, anxiety and depression.

Fortunately, recent years have seen the emergence of greater understanding and acceptance of transgender children, and more children than ever are seeking health care and support from providers. This care ranges from social and psychological therapies to physical transition into the self-identified gender. Endocrine Today spoke with Rosenthal about the unique challenges these children face and how clinicians can help.

Why do you think so many more transgender kids are seeking care today?

Rosenthal: I think that there is just more openness to discussing this and more people seeking services, in part, just to better understand themselves. Some of those people, through that process of self-discovery with the aid of people who are knowledgeable about this, particularly on the mental health side, they discover that they truly are transgender and choose to do something about it. I think the more people understand that biology plays a role in this, and that this is just as likely to be hardwired as any other fundamental part of you, is leading to increased acceptance.

What are the goals of transgender kids when they present for care?

Rosenthal: There are basically three populations we see in terms of transgender kids. The youngest group are prepubertal, but from the very beginning — in many cases from the time they can speak — insist that they are the other gender, the one that's different from the gender they were assigned at birth.

These kids sometimes undergo a form of intervention — not a hormonal treatment — called “social transition.” These kids basically insist on wearing the clothing that matches their affirmed gender. They want to have their hair be similar; they want to change their names and use pronouns that match. This, to a large extent, is referred to as the social transition. It doesn’t involve any kind of hormone treatment.

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We find that there are some kids who really push for this, and the parents don’t know what to do, so they come to a clinic like ours, which is the Child and Adolescent Gender Center at Benioff Children’s Hospital. They come to us and say, “What do we do?”

Here, we have a multidisciplinary team that includes not only medical professionals, but also mental health professionals, education and advocacy professionals. If needed, we have legal professionals. In a case like this, what usually happens is this family would meet with our psychologists, who believe in a gender affirmative model. This is based on studies that indicate that children who experience a great deal of negativity regarding who they are in terms of gender identity often end up with a less than optimal mental health outcome. In the worst-case scenario, they could have severe depression and maybe even suicidal ideation.

If the desire for social transition is something that is consistent and persistent over time, these mental health professionals who practice our gender affirmative model of care feel that it’s probably much more in the child’s best interest to affirm that child. Then, if it turns out that as the kid gets older, the kid comes to the realization that they are, in fact, not transgender, then so what?

The other two groups are kids who have reached early puberty and have had an intensification of feeling that they are the other gender, or who emerge into gender dysphoria as their bodies start to go through puberty. For these kids, there’s a very marked distress, anxiety and depression associated with the feeling that their body is changing in the wrong direction.

What is the intervention for these kids?
Rosenthal: The Dutch, who really are the pioneers in this work, started treating kids with a group of medications called GNRH or gonadotropin-releasing hormone agonists. These medications have been used in the pediatric population for about 30 years now to very effectively treat kids with precocious puberty, kids who, at way too young an age, go through the full-blown pubertal process. ... GNRH agents have been used for many years and have been found to be very effective and specific for blocking puberty in a completely reversible manner.

A very clever pediatric endocrinologist, Henriette Delemarre-van de Waal, MD, PhD, is basically credited as being the person who said, “Well, if we know that these medications work for those children...” This is based on long-term observational studies that the Dutch and others have done, a group from Toronto as well, showing that if you meet the mental health criteria for being transgender by the time puberty has begun, there’s a very great likelihood you will continue to identify as transgender throughout your adult life.

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Knowing this, the Dutch realized that for these kids who feel as though they are going through the wrong puberty, it becomes very difficult to blend in without having to subject yourself to expensive and not entirely risk-free surgical procedures. The idea here is if you put a patient who meets these criteria on a pubertal blocker, you can prevent them from going through the irreversible physical changes of the wrong puberty.

What can delaying puberty do for these patients?

Rosenthal: Along with avoiding the potential distress and depression of physically developing into the wrong gender, it gives them more time. They have an opportunity, without the clock ticking, to continue to explore their gender identity working with a multidisciplinary team such as ours. Not just any mental health specialist, but a gender specialist. Then they work with a pediatric endocrinologist or another mental health provider who is knowledgeable in hormones. This could be an adolescent medicine specialist or someone who is a primary care physician, but has been trained in the nuances of hormone use. We would explain to the family the options for pubertal blockers: the expected benefits, the risks, and how we monitor for all of that. That’s the medical treatment for the second group.

One critical issue at this point in time is that none of the options for pubertal blockers on the market are FDA approved for transgender use. No pharmaceutical company has taken the steps necessary to change their labeling to include this category.

Who is in the third category of transgender youth, and what are their options?

Rosenthal: The third group is a patient who has gotten a bit older, or who presents themselves initially to the clinic well into their teen years, and they are evaluated by a gender specialist who determines that they are, in fact, transgender. For this group, we would offer the ability to physically transition with the hormones that would affirm their gender identity.
looked at 55 youths who went through the stages of a pubertal blocker at early puberty, and then what we call cross-sex hormones a few years later. This study also included people who went through not only these stages, but also chose to undergo genital revision surgery, so that their genitalia is in alignment with their gender identity.

This study looked entirely at mental health measures, sense of well-being, self-esteem, things like that. They found that at the end of all of this, that their gender dysphoria had fully resolved, and their sense of well-being was equivalent or superior to that of young, healthy adults in the Dutch population.

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That study also addressed the deficiency in long-term data. There’s no question that more data are needed to inform optimal care. That’s just plain and simple.

What are some steps being taken toward additional research?

Rosenthal: I’m happy to say that our center, along with three other centers in the country, including Children’s Hospital Los Angeles as part of USC under the direction of Johanna Olson, MD, Lurie Children’s Northwestern under the direction of Robert Garofalo, MD, MPH, and Boston Children’s Hospital at Harvard under the direction of Yee-Ming Chan, MD, PhD, have pooled our efforts and were successful in receiving NIH funding to form a network. This is a four-center network that will do a long-term observational study of kids going on pubertal blockers and kids going on cross-sex hormones.

It’s a 5-year grant that we hope will be renewed many, many times. It’s the first time the NIH has funded this kind of work, to see how these kids do both from a mental health perspective and from a physiologic perspective, including bone health and other aspects of physiology over time. I think it's just really important in order to really move the field forward to do this type of research to inform optimal care, to see what we're doing right and to see what we could do better.

Are endocrinologists generally trained to provide this sort of care?

Rosenthal: One of the junior faculty in our group, Stanley Vance, MD, has now published a few articles describing the curriculum he is developing to train people at the medical student level and also at the intern residency and post-doctoral fellowship level. This curriculum is designed to provide comprehensive and gender-affirming care. There are other organizations that are doing this as well. The World Professional Association of Transgender Health has been doing this type of training since November 2015, and I’ve had the opportunity to be on their faculty several times, including at their inaugural course, which they call the Global Education Initiative. They offer comprehensive training programs for people, whether they’re in medical tracks or other tracks. The idea is that hopefully, in addition to these outside organizations, medical schools and internship, residency and fellowship, will begin to incorporate standard training in this area.

Another thing that’s really important is advocacy, particularly in this very contentious time. Just look at all of the emotional arguments going on about the transgender restroom issue at schools.  President Obama’s original directive acknowledged the gender identity of transgender kids and made them feel safe at school. I thought that was very enlightened,

Then you have the argument that, “You’re invading the privacy of my non-transgender kid.”  Well, first of all, a lot of these kids are stealth. No one knows at school that they are the other gender, and the last thing they’re going to want to do is expose themselves. They’re very private.

I have the honor of being president of the Pediatric Endocrine Society,  I think I was elected, at least in part, because people know about the work that do. I’m the Pediatric Endocrine Society’s representative to the Endocrine Society’s writing of the revised clinical practice guidelines for transgender people, which is about to be finalized.  I approached the board, of which there are eight members, and there was a very supportive discussion and a unanimous decision to make a public statement in support of transgender youth safety in schools, and allowing these kids to use the bathrooms and locker rooms that match their gender identity.  We want to provide advocacy that is informed and based on data, which shows that there has never been any example of a transgender person who has inappropriately behaved or interfered with the privacy of a non-transgender, cisgender person.

I don’t think this story is over. You cannot imagine the number of families, the number of kids, who are fierce advocates and won’t take no for an answer. They want to meet with President Trump. They want to meet with Secretary of Education Betsy DeVos. They want them to understand the reality of their kids, of their families. – Compiled by Jennifer Byrne

Reference:

For more information: Stephen M. Rosenthal, MD can be reached at University of California, San Francisco Mission Hall: Global Health and Clinical Sciences 550 - 16 St., 4th Floor, #4635
San Francisco CA 94143-0434; email: Stephen.Rosenthal@ucsf.edu.

Disclosure: Rosenthal has served as a consultant to AbbVIe Pharmaceuticals.