Death by Puberty?

A critical take on the issue of transgender children and medical intervention

Part 1

by Pat Green (a concerned teacher)

If you have been following the recent controversy over Rachel Stewart’s opinion piece ‘TERF: A derogatory term to shut down debate’, you may have read Kylie Parry’s response on the Spinoff website. Parry focuses on the issue of trans children and the use of medical interventions such as puberty blockers and cross sex hormones. She argues that fears over the issues of informed consent and the dangers associated with medical interventions are misplaced, and that trans children are no different from ‘regular’ or ‘cis’ children: they like sports, watch TV and don’t like doing chores. Most importantly, they are not evil people who want to ‘take over the world’ and they deserve respect and compassion.

As a teacher who has worked with and taught several trans-identified adolescents I fully concur with Parry’s contention that trans children are regular human beings who deserve to be treated with respect and dignity. Based on my limited experience I would even be tempted to go further, and note that many trans youth are particularly talented and display admirable character traits. I don’t think that they have a secret agenda and I do think that they should be free of bullying, harassment and discrimination.

Parry also makes three claims relating to medical interventions upon trans identified youth:

fact 1: no one performs any kind of gender affirmation surgery on children.

fact 2: you can only block puberty if your body is actually experiencing it. No pre-adolescent children get blockers.

fact 3: No transgender child is given hormone treatment. Ever. It’s not a thing.

She states that “Not all trans youth (or adults) are able or even want to take hormones. It’s a very personal choice.” Parry appears to be suggesting here that young people who take puberty blockers do not always go on to the ‘next level’ and start taking cross sex hormones. The phrase that is often used in this context is that young people experiencing gender dysphoria are ‘buying time’ by using puberty blockers. Another ‘fact’ often mentioned by supporters of puberty blockers is this one:

fact 4: Puberty blockers are fully reversible. If you stop taking them, all of the typical processes and changes of puberty start up again.

Noting that there are some very serious questions about the ability of both children and young adolescents to give genuinely informed consent which Parry effectively glosses over here, and that we may also wonder exactly what age marks the dividing line between ‘child’ and ‘adolescent’, I recognise that fact 1, fact 2 and fact 4 are all true statements. Fact 3, the claim that no child is ever given hormone treatment, is a false statement which I will show evidence for in what follows.

So, what is my problem with Parry’s article? An implicit theme in her article is that people who take a critical stance on medical interventions such as puberty blockers and hormones for children and adolescents are critical because they are hateful or ‘phobic’. I take issue with this: just as someone might be critical of Prozac and at the same time supportive of people suffering from depression, it is possible to have compassion for people who suffer from gender dysphoria and at the same time be critical of puberty blocking drugs such as Leuprorelin. Questioning medicalisation is not in any way equivalent to hate speech or ‘transphobia’.

What worries me even more is that Parry’s conflation of legitimate concern and prejudicial scaremongering masks a whole host of facts which cast a very different light on the use of medical technologies as remedies for gender-related distress. There is a story Parry is not telling here, and it deserves to be told. In what follows I will state another series of facts with quotes and links to various sources to back up what I say. Full disclosure: I am not an expert with formal training in this field. While I have received feedback and suggestions which have informed what follows from another concerned person who is a trained medical professional, I acknowledge my amateur status as a commentator on complex medical and physiological phenomena. Red flags are, however, often visible to professionals and amateurs alike, and in this case the flags are huge and brighter than neon.

[NOTE ON TERMINOLOGY: There are several different terms for puberty blocking drugs. In New Zealand, the most commonly prescribed versions are called ‘Leuprorelin’ and ‘Gosarelin’. Both are types of ‘GNRH agonists’ which stop the body producing sex hormones. ‘Lupron’ is a popular American brand of Leuprorelin.]

Fact 5: Puberty blocking drugs have potentially serious side effects we don’t know much about yet.

The well-known bioethicist and historian Alice Dreger comments:

“What’s particularly disturbing, then, given that Lupron is believed to carry significant risks, is how badly pediatric endocrinology has tracked its usage of this drug. Many—very possibly most—pediatric uses of it have occurred via academic medical centers, yet we have surprisingly little solid prospective data on the long-term benefits and harms.”

The original purpose of the drugs (such as Leuprorelin or ‘Lupron’) which block puberty was to treat prostate cancer. A later purpose was for the treatment of children who undergo precocious puberty . We don’t know anything at all about the long-term consequences for people who start using these drugs when they are teenagers:

In Lupron’s case, the vast majority of clinical data is found in samples of middle-aged or older men with late-stage prostate cancer.  This means the aggregate of the medical community’s understanding of Lupron’s safety profile relates to its use in this context, in terms of both the condition it is meant to treat and the individuals for whom it is approved.  When using Lupron as a “blocker,” medical professionals are, in both senses, treading untested waters, for the dual reason that it is not approved or recommended to “treat” this particular condition, and clinical studies relating to its long-term or even short-term safety in treatment of gender dysphoria are vanishingly rare.  To further illustrate this second point, the population to whom Lupron is most commonly prescribed on-label, middle-aged and elderly men, has a much shorter life expectancy from the date of administration than do teenagers.  In other words, based on the current state of research, one would not expect to see data collected from groups who are 40, 50 or 60 years “out” from administration.

Fact 6: Even the studies which are often quoted to show that puberty blockers are ‘beneficial’ contain numerous red flags

The most frequently cited study is based on evidence collected between 2000 and 2008 in the Netherlands. The 2014 paper ‘Young Adult Psychological Outcome After Puberty Suppression and Gender Reassignment’ involves a follow up study of 55 of the young people who were given puberty blockers in the early 2000s. All of them went on to take cross sex hormones as teenagers, and went on to have surgery performed on their genitals. Most serious clinical trials involve a ‘control group’ – a set of people with similar traits who do not take the drug being tested. There is no control group in this study, and also no attempt to measure physical outcomes – rather the focus is on the psychological well being of the participants. The conclusion of the article itself mentions several of the key limitations:

“Despite promising findings, there were various limitations. First, the study sample was small and came from only 1 clinic. Second, this study did not focus on physical side effects of treatment. Publications on physical parameters of the same cohort of adolescents are submitted or in preparation. A concurring finding exists in the 22-year follow-up of the well-functioning first case now at age 35 years who has no clinical signs of a negative impact of earlier puberty suppression on brain development, metabolic and endocrine parameters, or bone mineral density. Third, despite the absence of pretreatment differences on measured indicators, a selection bias could exist between adolescents of the original cohort that participated in this study compared with nonparticipants.”

The comments on brain development, bone mineral density and ‘endocrine parameters’ reflect valid concerns about the very conceivable side effects of puberty blocking drugs. Simply stated, puberty is a complex developmental process which involves not only the ‘obvious’ changes to secondary sex characteristics such as breasts and bodily hair, but also involves a host of other changes. A very real worry is that people who take puberty blockers will end up having problems with lower bone mineral density – meaning that they could be at much higher risk of conditions such as osteoporosis in later life. Another concern is that halting puberty will negatively affect brain development, possibly leading to lower IQ or higher risks of mental illness. The 22-year old follow up referred to is that of a female to male, who was given puberty blockers sometime in the mid-1990s. This is the very first case ever studied. The most we can reasonably conclude here is that it is possible to take puberty blockers and not suffer from these particular physical harms 22 years later. Without a proper sample we have no idea how likely this outcome is, and we still know nothing about long term prospects. As I will argue below, the ‘progress’ of medicalisation from blockers to hormones to surgery is typical: the vast majority of young people who start on blockers follow through with the more radical interventions. There are some very serious and profound consequences to these, and in the case of “B” – the very first person to have their puberty halted – they are notable:

B was still satisfied about his (minor) breast surgery, his ovariectomy, and his hysterectomy, but no longer about the metaidoioplasty he underwent one year after the first follow-up session. He did not like its size and shape and he could hardly urinate in a standing position. He was able to have orgasms, but he could not have sexual intercourse. Because of his desire to have more convincingly male appearing external genitals and his wish to be able urinate in a standing position, he considered having a phalloplasty. Despite his good looks and very masculine appearance, he had not had many steady girlfriends, which may have resulted from the guardedness he already had as an adolescent. At age 29, he had a serious relationship with a woman, which lasted for 5 years. However, he chose not to live together when the opportunity to do so arose. After his choice to continue living apart, his girlfriend ended the relationship, a few months before his interview at the clinic. This made him very much regret his lack of commitment. B considered it likely that his need to distance himself from her had been related to his shame about his genital appearance and his feelings of inadequacy in sexual matters.

What about the mention of a ‘selection bias’ in the sample? The study involved a cohort of 70 teenagers, of whom only 55 participated. The fifteen ‘non-participants’ are described as Nonparticipationfollows:

“Nonparticipation (n = 15, 11 transwomen and 4 transmen) was attributable to not being 1 year postsurgical yet (n = 6), refusal (n = 2), failure to return questionnaires (n = 2), being medically not eligible (eg, uncontrolled diabetes, morbid obesity) for surgery (n = 3), dropping out of care (n = 1), and 1 transfemale died after her vaginoplasty owing to a postsurgical necrotizing fasciitis.”

Not exactly confidence inspiring, is it? Necrotizing Fasciitis is a life-threatening bacterial infectious disease that can cause tissue destruction, multi-organ failure and death. In what follows I shall argue that the path from blockers to hormones and more radical interventions such as surgery is typical: most people who start on blockers continue down a medical path. So, although this death is not a direct consequence of blockers, this is a highly relevant fact which needs to be factored in to any serious risk/benefit analysis.

Note also the references to non-participants with ‘uncontrolled diabetes’ and ‘morbid obesity’. What does this have to do with puberty blockers?

Increased incidence of Type 2 diabetes, a consequence of weight gain and decreased insulin sensitivity, is a recognised side effect  in adults, but the significance of this effect in children/adolescents has not been well studied. Puberty blockers are drugs which radically interfere with the natural processes of the endocrine system. GNRH agonists such as Leuprorelin can have undesirable metabolic effects . They cause lean body mass to fall, fat mass to rise (primarily abdominal fat), and overall weight to rise. Undesirable changes in lipid profile and decreased insulin sensitivity can be seen.

Fact 7: Young people who take puberty blockers almost always move on to cross-sex hormones

All of the studies show that young people who start taking puberty blockers do not stop taking them, and in the vast majority of cases continue on to the next stage: cross sex hormones. A Canadian study makes this remark on the frequent apologia that puberty blockers are ‘fully reversible’:

“The sequence of this biomedical treatment is progressively irreversible. On the one hand, the use of hormonal medication to suppress or delay puberty is a reversible procedure; on the other hand, surgical interventions (e.g., in males, penectomy and castration; in females, bilateral mastectomy) are irreversible. Accordingly, if clinicians are going to support adolescents with gender dysphoria to move down a pathway that, in the end, results in a completely irreversible intervention, it is, as with adults, important to have a relatively high degree of confidence that the likelihood of regret will be low.”

People in key positions of power and influence within the institutions that support and promote the medicalised approach are aware of this fact, even if they frame it somewhat differently. Polly Carmichael, speaking at the 2016 World Professional Association for Transgender Health, comments:

In terms of our service we have had 44 young people in our early intervention project, who were part of a research project but we have now had 162 young people go forward for early hypothermic blockers and the age range reflects the fact it is by stage not by their age, but 2, only 2 have stopped treatment. And in both of those cases they have stopped treatment because they are wanting to explore a different gender identity. One is in a very supportive environment and wishes to try living in a different role without treatment for a while.

So I guess there is a question about why, Why none, why none stop if they’ve started on the blocker more or less, so I guess that begs the question that either we are not putting forward enough, that there are some people who would benefit from this who are missing out on this treatment. Or that in some way this treatment in and of itself may have an impact and may put people on a path. I totally support this treatment but I think it is about how we conceptualise it, the framework within which it is offered. [emphasis added]

Fact 8: The age at which young people with gender dysphoria begin a medical treatment route is becoming younger

The medical pioneers who started the puberty blocker experiment in the Netherlands over the course of the late ‘90s and early 2000s established what has come to be known as the Dutch Protocol. According to these guidelines, the minimum age for puberty blockers is 12 and the minimum age for cross sex hormones is 16. In recent years both of these age limits have been pushed lower and lower. The reason for the lowering of the age at which blockers are administrated has to do with the fact that many 12-year olds are physically beyond ‘Tanner stage 2’, the earliest phase of puberty. Ceasing puberty in its very early stages means that consequent surgery will be less radical and less necessary. The potential for cosmetically superior results will also improve with earlier intervention. This American paper from 2012 comments:

Upon the establishment of GeMS [Gender Management Service] in January 2007, we began to see, but not medically treat, prepubertal children. Appropriately screened patients with GID who were at Tanner stage 2 or 3 were offered pubertal suppression with GnRH analogs if they could obtain it. We did not limit our candidates to a minimal age of 12, as the Amsterdam group did. Postponing treatment until age 12 would result in many natal female patients being late Tanner 3 to Tanner 4, postmenarche, decelerating in growth velocity to a female final height, and with sufficient breast development to require a disfiguring mammoplasty.

From a pro-trans UK site:

“For many families, the question is not whether to intervene with blockers, but how early to start. Because the onset of puberty varies so widely — as early as age 9 for some — suppression can begin at different ages. And that’s prompted some disagreement within the field — the “age versus stage” debate — about when to begin, according to Leibowitz. Most often blockers are initiated at the first visible signs of development as measured by the Tanner Stages, a scale of sexual maturation developed by paediatrician James Tanner. The trigger for suppression is usually Tanner stage 2, when pubic hair and breast buds appear.”

The downwards pressure on the age limit for cross sex hormones is related to the fact that medical professionals are aware of the potential dangers of prolonged use of puberty blockers. A child who started blockers at 9 years old would spend a full seven years on blockers if they were to wait until 16 before starting cross sex hormones. This article from 2015 notes that medical experts recognise that prolonged use of blockers is dangerous, so hormone treatment should begin earlier than 16 years old:

While the Endocrine Society’s guidelines suggest 16, more and more children are starting hormones at 13 or 14 once their doctors, therapists and families have agreed that they are mentally and emotionally prepared. The shift is because of the concerns over the impact that delaying puberty for too long can have on development, physically, emotionally and socially.

The 2017 version of the Endocrine Society Clinical Practice Guideline recognises ‘compelling reasons’ for lowering the age below 16:

“2.5. We recognize that there may be compelling reasons to initiate sex hormone treatment prior to the age of 16 years in some adolescents with GD/gender incongruence, even though there are minimal published studies of gender-affirming hormone treatments administered before age 13.5 to 14 years.”

From a recent 2016 Guardian article:

“Helen Webberley, a GP in Wales, has set up a private gender clinic and recently started treating children, a “handful” of whom she has started on cross-sex hormones, including a 12-year-old. “He had been on puberty blockers since the age of nine,” said Webberley. “He would have to now wait until 16 to get testosterone. This child has always been a boy, never worn a dress, always played with boys.”

The recently published 2018 Australian Standards of Care and Treatment Guidelines: For trans and gender diverse children and adolescents also clearly mentions a concern with prolonged use of puberty blockers, and advise a prompt advance on to ‘Stage 2’ (cross sex hormones):

“The main concern with use of puberty suppression from early puberty is the impact it has on bone mineral density due to the absence of effect of oestrogen or testosterone on bone mineralisation during this time. Assessment of bone mineral density at commencement of treatment and regular monitoring during stage 1 treatment is therefore recommended. Reduction in the duration of use of puberty suppression by earlier commencement of stage 2 treatment must be considered in adolescents with reduced bone density to minimise negative impacts.”

The overall tendency here is to reframe the Dutch protocol age limits in terms of Tanner stages and the particular needs and circumstances of the child. Because the ideal time to administer puberty blockers is Tanner stage 2, the age minimum of 12 appears to have been replaced by a floating interval of between 9 and 11. Because of the awareness of potential issues with taking puberty suppressing medication for a prolonged period, the age minimum of 16 for cross sex hormones appears to have been replaced by a floating interval of between 12 and 14.

Here in New Zealand we follow the precedents set overseas in the Netherlands, the UK, Canada, Australia and the US. The recently published (2018) Guidelines for Gender Affirming Healthcare for Gender diverse and Transgender Children, Young People and Adults in Aoteroa New Zealand is ‘based heavily’ on the World Professional Association of Transgender Health (WPATH) Standards of Care. There are no explicit references to age minimums for medical interventions. For puberty blockers, the reference is Tanner stage 2:

“Health teams need to be aware of the positive impact of puberty blockers (GnRH agonists) on future well-being. Be mindful of the need to refer promptly and be aware of referral pathways. Puberty blockers can be prescribed from Tanner stage 2 to suppress the development of secondary sex characteristics, although are still beneficial when prescribed later in puberty to prevent ongoing masculinisation/feminisation.” (p.31)

For cross sex hormones, the age limit of 16 is mentioned but appears to be quite flexible and negotiable:

“In New Zealand young people aged 16 years and older are considered to be able to consent to medical care (Care of Children Act 2004), however it is increasingly recognised that there may be compelling reasons to initiate hormones prior to the age of 16 years for some individuals, although there is as yet little published evidence to support this. Consideration should be given to the individual circumstances including family support, length of time on blockers, concerns around final height, risks of delaying hormones and most importantly the ability to consent.” (p.33)

Fact 9: There is a solid body of evidence which shows that most children who experience gender dysphoria desist from identifying as ‘trans’ and live happily without any kind of medical treatment

To date there have been eleven studies which track the gender identity of people who experience gender dysphoria as children. All of the studies show that a clear majority of cases result in ‘desistance’: typically, gender dysphoric children end up becoming gay or lesbian adults. The desistance studies have been hotly contested and discussed, as the implications – especially for protocols regarding trans identifying children – are massive. Why would you give any child or adolescent medication with serious and potentially dangerous consequences when there is a good chance that the dysphoria will resolve itself without any such intervention? In a very readable article with links to multiple sources, Jesse Singal argues that

“Every study that has been conducted on this has found the same thing. At the moment there is strong evidence that even many children with rather severe gender dysphoria will, in the long run, shed it and come to feel comfortable with the bodies they were born with. The critiques of the desistance literature presented by Tannehill, Serano, Olson and Durwood, and others don’t come close to debunking what is a small but rather solid, strikingly consistent body of research.”

Some advocates of the use of puberty blockers argue that these results only apply to children. Adolescents with gender dysphoria persist with transgender identification 100% of the time. This argument is bluntly stated on the internet site ‘Transfigurations’:

“Young children may indeed change their minds, but gender identity seems to be fixed by the time kids have reached puberty. The Endocrine Society finds that transgender adolescents grow up to be transgender adults ‘100 percent of the time’.  Dr. Stephen Rosenthal, director of the Child and Adolescent Gender Center at UCSF, agrees: ‘Children who meet the mental health criteria for gender dysphoria in adolescence are likely to be transgender for life.'”

The problem with this argument is that it is supported by referring to samples of adolescents who have used puberty blockers, begging the question of whether the persistence is due to an innate condition or the medical treatment itself. The best discussion I have read on this topic is in Devita Singh’s 2012 PhD thesis:

“There have been no quantitative follow-up studies that have systematically examined the developmental process through which GID desists (e.g., how and at what age). Some authors suggest that desistence typically occurs sometime around puberty or early adolescence […] The results of a recent qualitative study by Steensma et al. (2011) suggested that desistence may occur between the ages of 10-13 years and is likely influenced by psychosocial and psychosexual factors.”

She also refers to a study which reinforces the points I have already made above:

“In a review of current treatment approaches, Stein (2012) suggested the possibility that temporarily stopping puberty may have the effect of increasing persistence. Thus, instead of allowing adolescents more time to “wait-and-see” and evaluate their gender identity options, puberty blocking treatment may unintentionally push adolescents towards cross-sex hormonal treatment and sex-reassignment surgery.”

Similar points are made by Alexander Korte in a 2008 paper:

“It is not known with any certainty at present how hormone therapy before the end of puberty might affect the further development of gender identity, or to what extent it might even iatrogenically induce persistence of GID [Gender Identity Disorder]. Thus, even in a case of treatment retrospectively judged to have been successful, one cannot necessarily assume that the patient’s transsexualism was a predetermined matter at the outset. . .”

In the author’s view, development inhibiting (LHRH analogues) [puberty blockers] or body altering (estrogens/androgens) hormone therapy should not be initiated before the patient’s psychosexual development is complete, in view of the current lack of scientific data on these forms of treatment and the potential danger of aggravating a gender identity disorder. Somatosexual maturity is attained by girls at the menarche and by boys at the time of the first ejaculation; in either sex, the age at which this occurs is highly variable, ranging from 11 to 16 years. Consequently, there is also a great deal of variation with respect to the time at which psychosexual development can be said to be complete, and this is the relevant time for decision-making about hormone therapy.

Fact 10: Puberty has never killed anybody. The manipulative hysteria which informs the argument that trans youth will commit suicide if denied medical treatment is not based on real world evidence.

The best piece I have read on this topic is an article by Ray Blanchard and J. Michael Bailey. They argue convincingly that:

1. Children (most commonly, adolescents) who threaten to commit suicide rarely do so, although they are more likely to kill themselves than children who do not threaten suicide.
2. Mental health problems, including suicide, are associated with some forms of gender dysphoria. But suicide is rare even among gender dysphoric persons.
3. There is no persuasive evidence that gender transition reduces gender dysphoric children’s likelihood of killing themselves.
4. The idea that mental health problems–including suicidality–are caused by gender dysphoria rather than the other way around (i.e., mental health and personality issues cause a vulnerability to experience gender dysphoria) is currently popular and politically correct. It is, however, unproven and as likely to be false as true.

It is deeply ironic that people who are critical of the medicalisation of gender are frequently smeared as ‘phobic’. Underlying the idea that puberty is somehow a deadly force which needs to be chemically prevented, there seems to be a huge well of fear. Sahar Sadjadi’s perceptive and insightful comments on this fear are worth quoting in full:

“While not all the clinical accounts of transgender children and their urgent need for puberty suppression adopt such a dramatic narrative, its core argument for puberty suppression is frequently repeated by numerous clinicians and advocates of the treatment: preventing the body from developing unwanted secondary sex characteristics saves children from violence, suicide, self-harm, and mental illness at the onset of puberty (which therefore constitutes an emergency) and from violence and discrimination (and in some accounts, unemployment, drug use, prostitution, suicide) which besets non-passing transgender adulthood.

“In this account, puberty appears as a ‘natural disaster’ that ravages the child’s body and its (gendered) integrity from within. It is an emergency, a disaster that is predictable; hence the intervention gains a preemptive feature. This sense of emergency (the onset of puberty) intensifies the public’s (as well as doctors’ and parents’) impulse for immediate action. Constructing puberty and its sufferings as a natural disaster that befalls these children resembles the particular ways that natural disasters in Africa, for instance, are portrayed. No one is responsible, but emergency aid is morally mandated. The disaster is inevitable. There is no pertinent context or history to it. It is how things are for those ‘very different’ people. The popular media depicts these children as very strange and fascinating and at the same time, deserving compassion. Their strangeness speaks to the strangeness of children to adults as well as the strangeness of gender subversive people to the gender-typical people. In this mission of “’aving strangers’, these children are strangers—not in remote lands, but strangers within. The child’s body requires saving from the devastation that the wrong hormone will unleash.”

***

There is a great deal more to be said on this issue. I have not even touched on the fact that puberty blockers followed by cross sex hormones cause lifelong sterility. Or the fact that the numbers of children and teenagers identifying as transgender has risen dramatically over the past three to four years, and that a significant majority of these children are female. Or the fact that young autistic people are much more likely to experience gender dysphoria. Or the fact that drug companies make a huge amount of money out of puberty blocking drugs. I will attempt to address some of these facts in part 2 of this article in a similar fashion, with links to sources and relevant quotes.

To conclude I would like to return to Kylie Parry’s article and mark another point of common ground between our differing perspectives: in all of these discussions, the well-being of children is at stake and this consideration should be at the centre of any debate. Gender dysphoria is a profound and debilitating form of mental suffering which demands our care and attention.

Yet it is very clear to me that such a focus should not lead us into an uncritical acceptance of the medical treatment model. We need to reflect with care and scrutiny on the institutions and medical technologies which effectively frame the diagnostic treatment models and practices. The doctors, psychiatrists, plastic surgeons, endocrinologists and drug manufacturers are all important players in the creation of the ‘trans child’ phenomenon. The drug companies, universities and medical institutions these people belong to are far from being neutral observers of a naturally occurring pattern: arguably they are an active component in a two-way process.