Side Effects Unknown: When Transgender Kids Undergo Hormone Therapy

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Dr. Asaf Oren.
Dr. Asaf Oren.Credit: Moti Milrod
Ayelett Shani
Ayelett Shani

Talking to: Dr. Asaf Oren, 45, pediatric endocrinologist, director of the clinic for transgender children and youth at Dana-Dwek Children’s Hospital, Tel Aviv. Where: In the clinic. When: Sunday, 10 A.M.

What ages does the clinic cover? How young are the youngest patients?

The youngest are 4, maybe 4 and a half, and the age range is until 18. These children have what’s known as “gender dysphoria.” They were born with a particular gender, and a conflict exists between that and their gender identity, which creates the dysphoria. There’s no good translation for the term in Hebrew – it’s actually the opposite of euphoria. Those who were born a boy and feel that they are really a girl, and vice versa, experience serious mental distress that produces anxiety, depression and social difficulties, so they come to the clinic for medical aid and medicinal treatment.

This treatment is irreversible, so we need to be certain that the person is mentally ready for it.

By “medicinal treatment,” you mean hormonal treatment; it needs to be emphasized that you, of course, are in charge of the medical treatment only and don’t deal with the psychological aspects.

The treatment is given with the accompaniment of mental-health experts and is conditional on several criteria. Above all, the wishes of the boy or girl. Also, there will be a diagnosis of gender dysphoria, made, naturally, by a psychiatrist or psychologist who has experience with children and adolescents in this specific area; the agreement of the parents, who sign consent forms and know what the implications and side effects are at each stage; and, the fourth and final condition: whether the adolescents themselves are at a suitable stage for treatment in terms of their maturity.

The treatment has several phases, beginning with hormones to inhibit or stop sexual development.

Yes. Of course, the young children who come to us do not receive any medicinal treatment, but advice and referral for psychological counseling. The medicines are administered from the age of adolescence.

Which is?

It depends on each patient’s specific development. For girls the average age is 10, for boys 11 or 12. The decision is made with a physical examination. For girls, the onset of adolescence manifests in the development of breast tissue; for boys, the volume of the testicles. Adolescents who are found suitable receive what are popularly known as “blockers”: We simply arrest their sexual development.

Which is a reversible process.

Dr. Asaf Oren.Credit: \ Moti Milrod

If they decide to stop taking the medication, their body will develop. They will just be a little late.

And the next stage – let’s say we’re dealing with a patient who’s in the process of transitioning to a boy – is to administer male sex hormones.

This stage is also executed under the same conditions. The patient’s wish; parental support; close follow-up by a mental-health professional. But in contrast to the inhibitory treatment, this treatment is irreversible, so we need to be certain that the person is mentally ready for it.

What does it mean that the treatment is irreversible? How does it manifest?

For example, in a girl who wants to become a boy and takes testosterone, the voice changes and becomes thicker. That can’t be changed afterward. Testosterone is also a hormone that causes hair loss.

The thing with these treatments is that their full consequences are not really known.

We know of certain side effects. For example, in adolescence, the bones complete their formation, dependent on the sex hormones, and if we arrest the sex hormones with the blockers for an extended period, the bone mass might be affected, so the treatment is time-limited. We don’t know, for example, how blocking the biological sex hormone affects the brain. We assume that there is an impact, but we don’t yet have proof. We also don’t know whether testosterone, for example, interferes with the creation of ova and how it might affect future fertility.

That’s odd, because hormonal treatment has existed for so many years.

That’s true. It’s not that no knowledge exists. We know of cases of transgender men who became pregnant, but we can’t guarantee fertility after years of testosterone. Accordingly, because we are dealing with adolescents, we recommend treatments that will preserve fertility, and refer the patients for consultation in this area.

This is an anomaly internationally, as I understand.

Yes. The local data are exceptional.

The Israeli craze for fertility hasn’t bypassed this sector, either.

There is tremendous cultural and social pressure in this country with regard to fertility. About 30 percent of transgender girls will have samples of their sperm preserved, and these are unusual rates by any criterion. It’s a technically simple process but not at all simple emotionally. It’s very difficult for trans girls to give sperm.

What about transgender boys? The numbers are lower there.

With trans boys, preservation of fertility is far more complex. It’s actually fertility treatment in every respect, involving ovulation induction, oocyte retrieval under anesthesia and all the possible side effects. On top of which, this treatment is not part of the [government-subsidized] “health basket” and can cost tens of thousands of shekels, assuming that it works the first time around. We have two trans boys who went through the process, and two more who are now in the midst of it, and that’s a number I don’t know of anywhere else in the world.

When we’re asked about the risks, we tell them the truth: that we don’t altogether know what the long-terms effects are.

Let’s talk a bit about the social transition, which usually precedes the medical treatment – in other words, adoption of the traits of the desired gender, externally.

We don’t begin medical treatment before some sort of social transition occurs. A mental-health expert who does follow-up or diagnoses will check that the boy or girl is living, even if not fully, in their desired gender. There’s a name change, the milieu is asked to address them in the male or female form, and so forth.

That’s interesting, because it actually illustrates another point – that you are a physician providing a medical response for a problem that is not medical.

From the feedback I get from patients, I know that we are helping them a great deal. After all, our goal as physicians is not to cause damage and to be of assistance. I have plenty of qualms. Every decision of this kind is difficult. On the other hand, we need to take into account the individual’s social situation and mental state.

The Gay Pride Parade in Kfar Sava, June 1, 2018. The caption on the shirts: 'Love thy child as thyself.' a variation on the passage in the Book of Leviticus "Thou shalt love thy neighbor as thyself.'

It’s completely different from the classic doctor-patient interface: “Doctor, my ear hurts, what should I do?”

It is physical distress, too. The dysphoria becomes very acute when the physical changes of adolescence start. We have boys and girls who are simply disgusted with themselves. Of course, as pediatric endocrinologists, we don’t have tools to make psychological diagnoses. We try to provide the most effective response at the level of medicinal treatment, to achieve good aesthetic results with minimal side effects and damage – and yes, the goal is really to improve the mental state.

Yes, that’s also a question – how to view this phenomenon, which until recently was actually considered, for some reason, to be a psychological problem.

There’s a de-pathologizing process. In the past the phenomenon was listed in the DSM [the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders]. There are also schools of thought that maintain that the mental distress isn’t caused by anything internal, but by the attitude of society. If society would accept them as they wish to be accepted, there would be no problem.

No minorities

What do you hear from the youths who come to you?

About harassment. About boys and girls who drop out of school because they simply can’t handle it. Along with these difficulties, there are also happy stories about schools that are accepting and accommodating and cooperating, and teachers who are meticulous about using the right form of address and about using the changed name, if the name has been changed. But don’t forget that we see those who come with their parents. We don’t really know what goes on outside. We do know that there are many youths who leave home because of this, and then of course there is no support or parental consent. Sometimes we get boys and girls from Beit Dror [a hostel for homeless LGBT youth], but our hands are tied; we can’t help them.

Of course. As though it weren’t difficult and complex enough, there are also ethical aspects.

I can’t treat anyone without parental consent. We’ve had many cases like that.

What happens when the parents are separated or divorced, or if one of them isn’t in contact with the child?

We had one case of a boy whose mother agreed to treatment, but the father wasn’t in the picture and didn’t give his consent. The case went to court, which decided in favor of the treatment.

Let’s talk a little about the parents.

I see parents who accommodate and accept the child, and the importance of their support really can’t be overstated; and there are sad cases of parents who don’t accept their child. By the way, it’s also hard for the parents who come here. They cry and break down, even though they’ve been prepared and know what they’re facing. At the moment of truth, it’s hard for them to accept. My focus, in any case, is on the children. Their welfare is important to me. I try as best I can to explain to the parents how important that is.

It’s so hard for everyone. I assume that the parents, too, are bothered by the fact that they are allowing their child to receive voluntary medical treatment whose full long-term implications aren’t known.

It is very difficult, and therefore the process is complex and multidisciplinary and contains many safeguards. We administer the treatment only to those whom we are convinced need it, not to everyone who declares that they want to live in another gender.

Would you approve treatment like this for your children?

If they were in the situation of the boys and girls who come to me, then yes. I would agree. I would not deprive my children of something like this.

Earlier you showed me the population distribution. Most come from Tel Aviv and the Central District. There are no Arabs.

It’s proportional to the population of the region. We also have patients from Jerusalem, Haifa and the south. There are no members of the minorities at all.

We can’t guarantee fertility after years of testosterone. Because we're dealing with adolescents, we recommend treatments that will preserve fertility.

But there are religiously observant people.

Yes. Not many, but there are. People come to us from all parts of the country and from all socioeconomic groups – it’s really not a matter of the most established groups. For most of the parents, it’s not a surprise, of course. They may not have known exactly how to define it, but they felt, from a very young age, that the child was different. The great majority of the patients also felt from the age of 5 or 6 that they were living in a body that was not appropriate for them. It’s not something that cropped up suddenly; they’ve lived with it for many years, with all that entails mentally and socially.

I read a study that noted that the rates of children who change their mind are very high. A boy of 4 can decide that he’s a girl and feel differently at the age of 12.

There are some for whom it’s a phase. The classic literature says that 80 percent of trans children will not continue to be adult trans, but the hypothesis is that the numbers aren’t up to date. In practice, far more than 20 percent persist with it until they enter adolescence.

What do you say to parents and teens who come to the clinic but are undecided?

I don’t decide for anyone. Certainly I don’t pressure or push. I simply explain all the options, and if there’s no consent and if there are doubts, we tell them to take whatever time they need. We say that both to boys and to girls. Some of them tell us that they’re not completely sure and ask us to give them the blockers so they can think. We have one female patient who was treated with blockers for a year and a half. She was wrestling with the social transition, and only after that period decided to continue.

What do you tell them about the risks involved in the treatment?

The problem is that there isn’t enough literature and there isn’t enough evidence. The field is growing now, more studies are being conducted, more clinics are being established, knowledge is accumulating. At the moment, when we’re asked about the risks, we tell them the truth: that we don’t altogether know what the long-terms effects are.

The number of people who are visiting the clinic is constantly increasing. You yourself think that it’s not because there are more children like these, but because now they finally have a place to turn to.

At one time we believed it was a rare phenomenon. In the United States, for example, the estimates were that there was one case per 33,000 [0.03 percent], and that there’s a difference between boys and girls. Today we know that it’s far more frequent, and that boys and girls seek help at a similar rate. An American survey from 2011 estimated the rate at 0.3 percent, and by January 2017 it had risen to 0.6 percent. Of course, the actual numbers are far higher, because not everyone who categorizes himself as transgender will seek treatment.

As an endocrinologist, is this the area of specialization you wanted to deal with from the outset?

I didn’t think I would be engaged in this, because it simply didn’t exist. Six years ago, I went to Toronto to specialize, and when I returned to Ichilov [Hospital], I was approached by Prof. Naomi Weintraub, in the wake of many cases of young people who came to the adult clinic, and at her initiative it was decided to set up the clinic and that I would coordinate the treatment. So I did actually get into it by chance. By the way, since I returned from Toronto, similar clinics have been set up there, too. In fact, there was nowhere [for trans children and adolescents] to turn to in many Western countries. But that situation has been changing at a dizzying pace in recent years.

And I’m very happy that I got involved in treating these young people, because it really is fascinating and it’s a developing field. The images already surround us in the popular culture. There are television programs with trans characters, there are major celebs who went through the process, there was a trans person on “Big Brother.” The public dialogue on the subject is intensifying and awareness is growing. More and more people who were afraid or didn’t even know what to do, are gathering courage and going for it.

I was actually surprised to discover that even in the super-liberal bubble that I live in, people were shocked when I told them that I would be interviewing you. They didn’t believe that teens were getting hormonal treatment.

I am not amazed and I am not shocked. We are working, and very cautiously, with guidelines that are based on 20 years of treatment. It’s a complex process and there are, as I said, many safeguards. Again, you have to understand what’s at stake. What the implications will be for these youths if they don’t have treatment. When what’s in the balance is an unstable mental state and suicide attempts, which in many cases are successful, you have to make your reckoning.

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