NICE Evidence Review for Use of Puberty Blockers for GD - Now Released

WPATH is effectively a patient lobby group. Quite why they have been given so much credence by psychiatrists, medics and scientists is a total mystery to me. No other patient group has achieved this.

I have been in a trial where 'watchful waiting' was one of the arms of the trial; it was ethical because there was uncertainty over whether either of the treatments were actually better than watchful waiting.

Agreed.

There are particular form of breast disorder and several haematological conditions where "watchful waiting" is a management option.
In haematology, it can be very important not to jump too soon for some conditions because some of them never manifest, or take up to 20 years to do it. And for those who do progress within a shorter time period, it's important not to expose patients to excess associated toxicities too early in the strategic treatment pathway.

BBC report says a control group would be difficult because you couldn't withhold treatment from one group.

The BBC article says, " Some argue that carrying out a controlled trial - which would provide better quality evidence - might be difficult because of the potential impact on mental health if treatment is withheld in one group."
Its unfortunate that BBC does not identify who are those making such an argument as clarity is important.

All roads lead to WPATH but its membership criteria show it is not a medical body, per se which is why it is surprising how much sway it holds. Maybe we could get a group discount...

"Full professional membership is available to professionals working in disciplines such as medicine, psychology, law, social work, counseling, psychotherapy, nursing, family studies, sociology, anthropology, speech and voice therapy and sexology.

Full membership costs $225 (US) per year, and carries voting privileges within the Association."

wpath.org/MembershipInfo

BBC report says a control group would be difficult because you couldn't withhold treatment from one group. That would only be true if the treatment was know to be successful. I have been in a trial where 'watchful waiting' was one of the arms of the trial; it was ethical because there was uncertainty over whether either of the treatments were actually better than watchful waiting.

What is truely unethical here is the way this treatment has been pushed as a cure, and death by suicide the inevitable consequence of withholding, by the worst sort of snakeoil salesmen.

It is no longer possible to do such a study, not because watchful waiting would be in any way unethical (compared with PBs it’s the safer option) but because the hype created around PBs mean that they could no longer sell it to parents or rely on children not to convince their parents to go private if they were allocated to the watchful waiting group.

The long term upshot, I suspect, is that puberty blockers will eventually be banned, having never been rationally trialled.

WPATH = Jess Bradley the flasher am I right?

Jess Bradley played a key role in NUS, Action For Trans Health and TELI.

WPATH was originally known as 'Harry Benjamin International Gender Dysphoria Association' The first version of the Standards of Care were published in 1979.
Stephen Whittle (Press For Change founding member) was president 2007–2009
www.wpath.org/about/history

There is some interesting background to Benjamin here:
stoptransingkids.wordpress.com/2020/06/02/who-was-harry-benjamin/

Jess Bradley - a government advisor on women's rights suspended by NUS over indecent blog. Part iii www.mumsnet.com/Talk/womens_rights/3325623-Jess-Bradley-a-government-advisor-on-womens-rights-suspended-by-NUS-over-indecent-blog-Part-iii

Previous threads

This is shocking (but not surprising).

Are any major news outlets covering this?

actionfortranshealth.org.uk/2015/03/30/transitional-demands/

Jess Bradley

publications.parliament.uk/pa/cm201516/cmselect/cmwomeq/390/39008.htm

WPATH = Jess Bradley the flasher am I right?

These kids haven't just disappeared into thin air.

What reasons are there for not engaging past discharge?

I don't know the set-up at GIDS - is it the usual annoying fumble that takes places when paediatric hands-off to adult services? (Affects a wide range of conditions including cancer services.)

I just had a look at the BMJ by Carmicheal et al. that @IDontOnlyLikeJazzFunk links to. Here an exerpt:
"Young people experienced little change in psychological functioning across the study. We found no differences between baseline and later outcomes for overall psychological distress as rated by parents and young people, nor for self-harm. Outcomes that were not formally tested also showed little change."
As far as I can tell there was no change across a range of indicators including the Utrecht gender dysphoria score. Having said that there aren't many participants in the study - 44 at the beginning and only 14 followed up at 36 Months. Does any one know of studies that follows patients that aren't given puberty blockers?

Though you'd have thought that they would know who they had treated in the past still.

And you'd also be asking big questions about a) why they couldn't be traced b) there is a low take up on answering questions about follow up.

These kids haven't just disappeared into thin air.

What reasons are there for not engaging past discharge? The omerta itself should set alarm bells. I would imagine this isnt an issue for following up outcomes for other health conditions. People generally want to make the experience of having significant health problems easier to deal with for others behind them.

Is it ethical to base treatment on 'gut feel'?? In my book that is absolutely beyond the pale and I think the medical negligence suits that are inevitable will reflect that.

Yes.

In a word.

You do not need people working against research (and the big tragedy here is that happens from BOTH sides in this case)

This is true of ideology in medicine as a rule.

What makes this NICE document slightly different and I'd argue isn't about both sides at all, is that NICE are saying there just isn't evidence either way. There's nothing. Its a vacuum. The document repeatedly says 'no evidence'.

This is significant and important to note.

We know that there is no follow up being done, once drugs have been used. The onus once drugs have been administered is to prove its doing no harm and is doing what its supposed to. You have to justify your recommended treatment after the fact. The dynamic here is it shouldnt be for not for anti-medicalisation campaigners and researchers to be raising questions about this absence of data. The default is this is the very minimum level of information that should be rigoursly being kept and examine to remove all ability to raise question marks.

Also noting here that the care pathway recommended by the Tavi seems to be is positive affirmation as the default. Rather than more patient / long term watchful waiting approach which is being frowned on by the most vocal lobby groups. Again bias already built in at an institutional level on a complete lack of evidence and follow up.

If you have given out the drugs you have already demonstrated that you believe it works, therefore you have the power in the dynamic and the responsibility to show you are correct. Anti-blocker and hormone groups do not have this power, moral responsibility and do no harm ethical issue at this point. It is the absence of a follow-up up which tilts the issue as being fundamentally one sided and controlled by that side. This is backed up by the fact organised campaigns to block any kind of follow-up research (theoretically likely to be biased in the other way or not) have been pretty much universally successful. NICE's very purpose is to look at all studies in an area of medicine and to assess their quality / bias and whether the study is fundamentally flawed. Those advocating drugs will be aware of this but aren't prepared to trust that medical bodies will actively look out for questionable studies with a nefarious agenda in ideologically sensitive areas of medicine.

If this is about 'both sides' ideological bias then this still doesn't explain the ethical black hole which is the absence of the Tavistock follow up data.

Normally I would argue the toss about both sides on such ideologically sensitive medical issues. On this one i cant because of the balance of power and institutional level failings on basic safeguarding protocol. Its indefensible.

twitter.com/Transgendertrd/status/1013774040509673478

Unfortunately, the video linked in this tweet is no longer available.

A father in Canada was put in prison partly because he didn't want his child to have the csh treatment.

A child in Australia was taken away from their parents for similar reasons.

Since the High Court ruled children can't consent, we had the lobby groups/organisations/activists saying parents know best and the decision should be down to them.

Apart from when parents refuse, they mean. Because if they really believe parents do know best, they wouldn't be trying to criminalise parents who are rightly cautious.

You can’t placebo puberty blockers because puberty will continue unabated. You can do control group vs puberty blockers group but this possibility has been dismissed as “unethical” because of the “distress” it may cause to not give puberty blockers.

But now we have historical controls: the recent publication of a study that shows if you leave boys alone only a small percentage of them persist.

So now the “unethical” arm of a control group vs puberty blocker group is the puberty blocker group.

There needs to be an immediate moratorium on puberty blockers for moral and ethical reasons, not just legal rulings.

www.bbc.co.uk/news/health-56601386

Coverage by the BBC

When I say "that's fine", I mean (in case it wasn't obvious) that of course parents can and should so consent where it's necessary! I didn't mean in this particular context.

If giving these drugs to under-18s is to be stopped, it's the problems of the drugs themselves that will stop it, not - or not only - questions of consent. I think that's what the parts of the GLP ruling that talk about whether these drugs are a "special case" was looking towards.

All of these court cases and reviews are just steps sadly - we are a way yet from any firm set of rules being established. (And even when they are there will be the Mad Webberleys of this world to deal with).