Treatments for trans children and politics, world-wide

[Ormond]

As I just said in the UK politics thread, I am starting this to get the topic out of just the UK thread, which Momont asked people to do.

I am not sure that the evidence here is as weak as the author of the Cass report concluded. But even if it is, that is no reason for governments to step in and ban all treatments. 

Trans adults who are personal friends of mine have told me how going through a puberty which was opposite their gender identity was particularly traumatic for them. It would seem to me that the use of puberty blockers is reasonable for any pubertal child who has been diagnosed as trans by a mental health professional who has expertise in the subject.

I think that the present nature of the research should be presented to parents and guardians (and to the children themselves) as part of informed consent. They certainly should be told that the research is preliminary and conclusions about the efficacy and side effects of any treatment could change as more research evidence becomes available. But I think once the information has been clearly given, the decision on which treatments to use should be left up to the family and their medical and mental health professionals, without the government being involved. 

And as that report itself seems to me to say, government health agencies should be providing a lot MORE support to trans children and their parents than they now are, not using them as political punching bags.

I must add that I was a bit jarred when the McMartin preschool case was brought up as an analogy. I think that is only relevant if one is claiming that a large percentage of children being given treatment for "trans" issues have been "brainwashed" by their parents or psychotherapists into thinking they are transgender when they really aren't. I think there is way LESS evidence for that than there is for efficacy of diagnosie or treatment, and mentioning it is (unintentionally, I believe, from the poster on this board) insulting to the huge majority of parents and caregivers of transgender children worldwide. 

[TrackerNeil]

15 minutes ago, Ormond said:

I must add that I was a bit jarred when the McMartin preschool case was brought up as an analogy. I think that is only relevant if one is claiming that a large percentage of children being given treatment for "trans" issues have been "brainwashed" by their parents or psychotherapists into thinking they are transgender when they really aren't. I think there is way LESS evidence for that than there is for efficacy of diagnosie or treatment, and mentioning it is (unintentionally, I believe, from the poster on this board) insulting to the huge majority of parents and caregivers of transgender children worldwide. 

I am this poster, and I am surprised you took that as an insult. However, I will clarify my statement.

Some things are accepted as medical/psychological fact that we later learn to be mostly fiction, and recovered memory is one of those things. That doesn't mean there is no therapeutic value to puberty blockers, hormones, whatever; it means we should all be suitably humble about anything accepted as true when the evidence base is weak. I made no claims about "brainwashing", and if anyone thinks that is what I was meant, I'm now setting the record straight.

Like many, I've been following this topic through the various UK threads, and I have seem lots of assertions and lots of pot-shots, but what I haven't seen are honest questions. It's like we all assume we know what others are thinking, so who needs to ask? That's why I posed direct questions to DMC--I wanted to know his thoughts. He complied, and now I understand his position better.

It's been said that if you don't understand the position of others you probably don't understand your own. 

Edited April 21 by TrackerNeil

[Ormond]

6 minutes ago, TrackerNeil said:

 

Some things are accepted as medical fact that we later learn to be mostly fiction, and recovered memory is one of those things. That doesn't mean there is no therapeutic value to puberty blockers, hormones, whatever; it means we should all be suitably humble about anything accepted as true when the evidence base is weak. I made no claims about "brainwashing", and if anyone thinks that is what I was meant, I'm now setting the record straight.

 

I guess that using McMartin as an example of the above is problematical for me because the main person who "discovered" the false "recovered memories" in that case was a social worker who did not have any certification as a psychotherapist, though she claimed to be a "therapist", and so I don't think that case was actually based on "accepted medical fact" in the same way other examples might have been. I think the majority of real child psychotherapy experts were skeptical about that case and thought law enforcement was way too accepting of the claims of that particular social worker back while it was going on. 

[TrackerNeil]

3 minutes ago, Ormond said:

I guess that using McMartin as an example of the above is problematical for me because the main person who "discovered" the false "recovered memories" in that case was a social worker who did not have any certification as a psychotherapist, though she claimed to be a "therapist", and so I don't think that case was actually based on "accepted medical fact" in the same way other examples might have been. I think the majority of real child psychotherapy experts were skeptical about that case and thought law enforcement was way too accepting of the claims of that particular social worker back while it was going on. 

OK, then think of recovered memories without McMartin. Or think of lobotomies. There are no lack of examples of my point without getting entangled in a specific example.

[Week]

One would expect regret rate and detransition statistics to be through the roof with the amount of discussion that we all feel entitled to regarding myriad therapies that address challenges that most of us do not have. Instead, the loudest and most assured align themselves with, as I've said, the types of arguments that the pro-life crowd where -- frankly -- the hypocrisy and ignorance abounds.

Learning more and seeking to understand is completely normal, understandable, and valid -- I do too. Seeking to stop, control, and shut down does not seem appropriate for the many of us lacking experience or a personal connection.

[DMC]

1 hour ago, Ormond said:

I think that the present nature of the research should be presented to parents and guardians (and to the children themselves) as part of informed consent. They certainly should be told that the research is preliminary and conclusions about the efficacy and side effects of any treatment could change as more research evidence becomes available. But I think once the information has been clearly given, the decision on which treatments to use should be left up to the family and their medical and mental health professionals, without the government being involved. 

Yeah.  And as I tried to express in the UK thread, the idea that the only treatments that should be allowed are those with “strong” evidence supporting their long term effects would be..severely limiting across all of medicine.

[Zorral]

5 minutes ago, Week said:

Seeking to stop, control, and shut down does not seem appropriate for the many of us lacking experience or a personal connection.

Come, come, that doesn't fit into our remit to always be humble when those who are never wrong inform us we always do not know of what we speak/experience.

Edited April 21 by Zorral

[Conflicting Thought]

There is a resent episode on the podcast conspirituality that talks about this, about the cass report and how this vision of "contagion" came to be, its focus is steve hassan and his transphobia, i think it would be a good listen, i found it to be very informative.

https://www.conspirituality.net/episodes/202-steve-hassan-trans-cult-conspiracy-theory

[DMC]

Just as an example, my dad has gone through a number of experimental treatments and procedures over the last eighteen months in an effort to improve his very serious heart condition.  I can only imagine his reaction - as a PhD in Physiology from Berkeley with a half century of experience in medical research - if he was told those treatments weren’t available to him because the government does not have “strong” evidence supporting their effects.  Then again, his reaction would be so vehement it’d may well kill him.  So, problem solved I guess.

[Week]

41 minutes ago, DMC said:

I can only imagine his reaction - as a PhD in Physiology from Berkeley with a half century of experience in medical research - if he was told those treatments weren’t available to him because the government does not have “strong” evidence supporting their effects.  Then again, his reaction would be so vehement it’d may well kill him.  So, problem solved I guess.

What if he was told that he couldn't [have the surgery] because there were folks out on a Song of Ice and Fire forum that were really concerned about the safety of kids? That seems like it might be compelling.

Edited April 21 by Week

[DMC]

13 minutes ago, Week said:

What if he was told that he couldn't [have the surgery] because there were folks out on a Song of Ice and Fire forum that were really concerned about the safety of kids? That seems like it might be compelling.

Well, considering he is aware I post on this forum, he’d probably punch me in the face.

[Week]

10 minutes ago, DMC said:

Well, considering he is aware I post on this forum, he’d probably punch me in the face.

Fair. Didn't argue hard enough. You just let the thread impact legislation for other people's care. So it goes.

Edited April 22 by Week

[karaddin]

2 hours ago, DMC said:

Just as an example, my dad has gone through a number of experimental treatments and procedures over the last eighteen months in an effort to improve his very serious heart condition.  I can only imagine his reaction - as a PhD in Physiology from Berkeley with a half century of experience in medical research - if he was told those treatments weren’t available to him because the government does not have “strong” evidence supporting their effects.  Then again, his reaction would be so vehement it’d may well kill him.  So, problem solved I guess.

At this point in my life I only take 1 medication "for being trans" - estrogen. I take a bunch of others for migraine and chronic pain and I'm pretty sure the majority of them would not be allowed for the purpose I take them if this high bar of evidence was a pre-requisite for ever getting to use them. Perhaps the evidence available now would be sufficient, but the years/decades of off-label usage that provided that evidence would not have been allowed which amounts to the same thing.

The medications that I have been on or am still on covers two different categories of blood pressure medication, multiple anti-depressants, multiple epilepsy medications*, and botox injections. There's now anti-migraine medications (made for that purpose) in the mix as well which are fantastic, but if I try drop any of the other 3 medications I'm also on alongside them my quality of life and ability to work nosedives very dramatically. This off label usage of medications quite literally makes my life worth living.

*Two of the epilepsy medications cause severe side effects for me, and they're judged as high risk - one caused me to become susceptible to seizures and major personality changes, the other had some weird undocumented effect that I think weakened my connective tissue causing most of the major joints in my body to start popping in and out. They were really unpleasant. My doctor informed me of the risks in advance as best as he was able, suggested I loop in my family and trusted workmates to keep an eye out for dramatic personality shifts, and I then consented to try these medications out. Informed consent in practice. Its a bedrock of our medical system for a reason.

[mormont]

9 hours ago, TrackerNeil said:

OK, then think of recovered memories without McMartin. Or think of lobotomies. There are no lack of examples of my point without getting entangled in a specific example.

Lobotomies, with respect, are an even worse example. Nobody doubted that lobotomies caused irreparable harm. 

If there's no lack of examples, it's hard to understand why the first two comparators that come to your mind are not very comparable.

As for the Cass review and puberty blockers, I quoted previously the actually worrying finding, which is that most of the (very small number) of under-18s being prescribed them were older, with the most common age being 15. There's a suggestion that this was done purely because protocols required they be on puberty blockers for a year before being prescribed gender affirming hormone treatments. No arguments there: if that's true, it's bad medical practice. Drugs should be prescribed on medical need, not to fulfil an administrative requirement. 

But I'll repeat, since it's not been mentioned in this thread yet - the Cass review did not find any evidence that puberty blockers were harmful. Prescribing a medicine where the evidence of benefit is weak, but there is no evidence of harm, is not as unusual as some people seem to imagine. Take this study, for example:

https://blogs.bmj.com/bmjopen/2024/02/15/poor-quality-clinical-data-informing-nice-decisions-on-treatments-in-over-half-of-cases/

What is unusual is that this is a controversial area of medicine. But let's not pretend that it is controversial because of the weakness of the evidence base. Rather, more is being made of the weakness of the evidence base because the area is politically controversial. 

[Ran]

10 hours ago, DMC said:

Just as an example, my dad has gone through a number of experimental treatments and procedures over the last eighteen months in an effort to improve his very serious heart condition.

In Sweden and Finland, the results of their findings and their recommendations were that because of the low evidence base, blockers and hormones should only be given to minors in research contexts, i.e. with the intention of collecting data to improve medical knowledge. This is something that, as I understand it, is a difference between the care that had been given in the UK previously, where detailed outcome results have not been collected for study despite no one really knowing anything about the outcomes of these relatively novel approaches to treating children.

I imagine your father's experimental care are part of research and clinical trials where he's signing on board with having his results shared for the advancement of knowledge, and I think even he might question the ethics of receiving experimental care without an appropriate protocol to help understand the efficacy of that care.

I think the situation is said to be even worse in the US regarding this care for minors, per the NYT's reporting. Very, very little oversight or data collection in relation to what one would want for any care with a low evidence base.

Edited April 22 by Ran

[DMC]

2 hours ago, Ran said:

I imagine your father's experimental care are part of research and clinical trials

Nope, expanded access.

[TrackerNeil]

2 hours ago, mormont said:

But I'll repeat, since it's not been mentioned in this thread yet - the Cass review did not find any evidence that puberty blockers were harmful. Prescribing a medicine where the evidence of benefit is weak, but there is no evidence of harm, is not as unusual as some people seem to imagine. 

If there were evidence of harm, would you change your mind?

[Matrim Fox Cauthon]

12 hours ago, DMC said:

Just as an example, my dad has gone through a number of experimental treatments and procedures over the last eighteen months in an effort to improve his very serious heart condition.  I can only imagine his reaction - as a PhD in Physiology from Berkeley with a half century of experience in medical research - if he was told those treatments weren’t available to him because the government does not have “strong” evidence supporting their effects.  Then again, his reaction would be so vehement it’d may well kill him.  So, problem solved I guess.

As you say here, I think that the opposition to Puberty Blockers in this regard seems to be incredibly selective, if not suspiciously so, when it comes to this issue but overlooked (perhaps through ignorance) when it comes to wide variety of other commonplace and novel medical treatments used for adults and children alike. 

 

13 hours ago, TrackerNeil said:

OK, then think of recovered memories without McMartin. Or think of lobotomies. There are no lack of examples of my point without getting entangled in a specific example.

Comparing puberty blockers to lobotomies seems grossly inappropriate. If you lack no examples of your point, then maybe don't keeping using that one. There are indeed many examples treatments that medical professions used to prescribe or perform that we would nowadays regard as barbaric, scientifically insufficient, or pure quackery. My partner, who is a doctor, talks a great deal about these things everytime medical issues pop up in film or television. There are likewise ones now that will be regarded the same in less than ten years time. That is the nature of scientific development in the medical profession. 

I do agree that there should be more data collection and clinical testing, but, as @mormont repeatedly points out to little avail, the Cass Review does not suggest that puberty blockers are harmful. The Cass Review is primarily about implementing better medical practices and healthcare services regarding puberty blockers. In many respects, the Cass Review is about how better to support trans and/or gender non-conforming youths as well as those involved in that process (e.g., parents, doctors, psychologists, etc.). 

 

35 minutes ago, TrackerNeil said:

If there were evidence of harm, would you change your mind?

If there were evidence of little to no harm, would you change your mind? 

What is meant by "harm" has to be approached with some care when it comes to medical treatment. There are a wide variety of fairly commonly acceptable forms of medical treatment that cause "harm," often in the form of adverse side-effects, but are nevertheless considered worth the treatment by medical practitioners and patients (or their legal guardians). This is why I say "little to no" harm rather than just presuming a complete lack of harm. 

Chemotherapy, for example, can cause long-term "harm" to the body through a variety of potentially adverse side-effects. Nevertheless, we use chemotherapy on children as well. There are likely far more children undergoing chemotherapy treatment in the US or UK than there are minors even requesting puberty blockers in these respective countries. 

ETA: I would also add that puberty blockers are not something developed for trans youths nor are they new. They have also prescribed PBs to a variety of cis-kids who may have hormone imbalances that may cause them to experience puberty as early as age 7. They have been used in this way since the 1980s. They were developed primarily to help these aforementioned cis kids experiercing puberty too early. If puberty blockers do indeed cause harm, then the evidence of harm committed against these kids has been pretty absent, if not silent. 

Edited April 22 by Matrim Fox Cauthon
unintended double-negative

[Ran]

56 minutes ago, Matrim Fox Cauthon said:

when it comes to wide variety of other commonplace and novel medical treatments used for adults and children alike. 

Even expanded access requires that a regulatory body signs off on there being sufficient understanding to know the probable risks and benefits in relation to the risks of harms for not giving it. It's a lot easier to give someone compassionate access to a possible life-saving drug or procedure when the evidence is very clear that the alternative is likely death.

In this case, neither harms nor benefits are really understood very well. 

As to puberty blockers, it's interesting that the German countries have come up with their own guidelines. One decision they've made is that long-running gender dysphoria in childhood is not a reason to prescribe puberty blockers prior to the onset of puberty, as they see evidence that the hormonal jolt of puberty can resolve dysphoria. Only if dysphoria persists for some period after the onset of puberty would they conside the use of blockers to halt the process.

Edited April 22 by Ran

[mormont]

1 hour ago, TrackerNeil said:

If there were evidence of harm, would you change your mind?

The quoted is not my 'mind', though. It's not an opinion, it's an observation. 

With respect to that observation, if the facts change, the facts change. If a medicine does show evidence of harm, the consideration then - made by far more qualified folks than you or I - would be about a balance of the harm versus the benefit. Again, it's not unusual for that to happen, in fact it's commonplace. 

I'm going to try not to be rude here. But there are, we can agree, numerous medical interventions that have weak evidence and many that show evidence of harm, and we're not discussing those. Do you accept, then, that it's not solely the weakness of the evidence or the possibility of evidence of harm that is making you ask that question, and making you so curious about whether these particular interventions cause harm, or should be approved? 

As I've said repeatedly: there's no point in pretending that this is a medical discussion when it is in fact a political one.