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

[IDontOnlyLikeJazzFunk]

now released. NC. The full link is below, this is the summary. It's not looking good.

Discussion
A key limitation to identifying the effectiveness and safety of GnRH analogues for children and adolescents with gender dysphoria is the lack of reliable comparative studies. The lack of clear, expected outcomes from treatment with a GnRH analogue (the purpose of which is to suppress secondary sexual characteristics which may cause distress from unwanted pubertal changes) also makes interpreting the evidence difficult.

The studies included in this evidence review are all small, uncontrolled observational studies, which are subject to bias and confounding, and all the results are of very low certainty using modified GRADE. They all reported physical and mental health comorbidities and concomitant treatments very poorly. All the studies are from a limited number of, mainly European, care facilities. They are described as either tertiary referral or expert services but the low number of services providing such care and publishing evidence may bias the results towards the outcomes in these services only and limit extrapolation.

Many of the studies did not report statistical significance or confidence intervals. Changes in outcome scores for clinical effectiveness and bone density were assessed with regards to statistical significance. However, there is relatively little interpretation of whether the changes in outcomes are clinically meaningful.
In the observational, retrospective studies providing evidence on bone density, participants acted as their own controls and change in bone density was determined between starting GnRH analogues and follow up. Observational studies such as these can only show an association with GnRH analogues and bone density; they cannot show that GnRH analogues caused any differences in bone density seen. Because there was no comparator group and participants acted as their own controls, it is not known whether the findings are associated with GnRH analogues or due to changes over time.

Conclusion
The results of the studies that reported impact on the critical outcomes of gender dysphoria and mental health (depression, anger and anxiety), and the important outcomes of body image and psychosocial impact (global and psychosocial functioning), in children and adolescents with gender dysphoria are of very low certainty using modified GRADE. They suggest little change with GnRH analogues from baseline to follow-up.

Studies that found differences in outcomes could represent changes that are either of questionable clinical value, or the studies themselves are not reliable and changes could be due to confounding, bias or chance. It is plausible, however, that a lack of difference in scores from baseline to follow-up is the effect of GnRH analogues in children and adolescents with gender dysphoria, in whom the development of secondary sexual characteristics might be expected to be associated with an increased impact on gender dysphoria, depression, anxiety, anger and distress over time without treatment. The study by de Vries et al. 2011 reported statistically significant reductions in the Child Behaviour Checklist (CBCL) and Youth Self-Report (YSR) scores from baseline to follow up, which include measures of distress. As the aim of GnRH analogues is to reduce distress caused by the development of secondary sexual characteristics, this may be an important finding.

However, as the studies all lack appropriate controls who were not receiving GnRH analogues, any positive changes could be a regression to mean.

The results of the studies that reported bone density outcomes suggest that GnRH analogues may reduce the expected increase in bone density (which is expected during puberty). However, as the studies themselves are not reliable, the results could be due to confounding, bias or chance. While controlled trials may not be possible, comparative studies are needed to understand this association and whether the effects of GnRH analogues on bone density are seen after they are stopped. All the studies that reported safety outcomes provided very low certainty evidence.

No cost-effectiveness evidence was found to determine whether or not GnRH analogues are cost-effective for children and adolescents with gender dysphoria.

The results of the studies that reported outcomes for subgroups of children and adolescents with gender dysphoria, suggest there may be differences between sex assigned at birth males (transfemales) and sex assigned at birth females (transmales).

arms.nice.org.uk/resources/hub/1070905/attachment

@Sophoclesthefox

Thanks, idont and arabella

I only bring up my personal experience because we’re so often accused of not having skin in the game. I also do...enjoy isn’t the right word...but wryly note that for all trans allies are about need to respect lived experience and personal truths, I have yet to have a single drop of empathy from one for my own lived experience with this. The well of empathy runs dry when it’s women’s experiences, of course. But it’s interesting anyway.

Derail over. Back to protecting children from experimental protocols.

Your experience is awful. I’m so sorry.

Endometriosis is a fucking awful condition and wildly under researched (can’t think why🙄)

Across the board we have seen an erosion in this as the post war political settlement which recognised the need to balance interests to protect the most vulnerable from abuse from more powerful groups and the state has broken down. Its part of a pattern. Safeguarding has been removed because taking care and understanding the need to compromise dilutes power.

Its a warning sign that our entire political system has become corrupted and ethics are no longer important.

This isnt cynical to ask why is protocol not being followed. We shouldn't frame it as a cynical response. We should frame it as the default response that everyone SHOULD be making and asking why the fuck its not.

Agreed and well said RedToothbrush. This issue is one example where we can see the structural failures around children very clearly. It’s frightening.

Its a warning sign that our entire political system has become corrupted and ethics are no longer important.

@ChattyLion. Sadly, this is increasingly evident, every damned day.

I share your worries on the role that autism plays, mmelaraque. The information that came from the Tavi really didn’t provide much comfort on that front, did it?

Thanks, sexnotgender

Lueprorelin acetate is Lupron.

@drspouse

Lueprorelin acetate is Lupron.

Yikes!! I did wonder when I was typing it out but didn’t have time to check.

It is concerning that this is listed as being suitable for prescription to children with precocious puberty given the horrendous problems that have been reported for many years now.

They don’t appear to list all of the side effects or mention that there have been 25000 adverse events reported. It must be a minefield for a doctor trying to find safe medications for patients.

Going back up the thread a bit:

Will the Guardian touch it? Will Jesse bloody Singal?

Jesse's response is interesting, but typical, and he's being pulled up on it:

1/ No amount of yelling, threatening, or attempting to deplatform people will change the fact that the evidence for puberty blockers is nowhere near where we should want it to be. The response should be doing more research, not shooting messengers.

2/ There's a strong case PBs are, on balance, the right choice for kids who are deeply dysphoric and who risk serious ongoing anguish otherwise. But assessment is vital and it's deeply irresponsible for so many LGBT orgs to creep right up to the line of lying a/b the evidence.

3/ Because any asshat can get 2,000 retweets blasting the IGNORANT IDIOTS who dare ask any question about PBs, a serious complacency and intellectual rot has set in. Activists should be the ones pressuring researchers to provide better evidence! There's none of that. It's broken.

Reponses to tweet 2:

(Emma Hilton) Make the strong case.

There isn't a strong case. Unless you know something the medical experts at NICE don't.

If there was a strong case, surely there would be robust evidence to accompany it.

Hold on, I thought the evidence you just shared suggests there isn't a strong case, given that they don't seem to work?

When you say there’s a “strong case”, do you mean a “strong THEORETICAL case” or are you privy to evidence that NICE did not consider?

If there's a lack of evidence how can there be a strong case? Because a lot of shouty people shout about it?

I think he's still falling into the "neutral" = "halfway between both sides" trap.

Emma Hilton is (of course) spot on.

I would be thrilled beyond measure if Jesse Singal had the integrity to whip through the NICE review's extensive appendices about the search protocol for the literature and say where it was flawed and how it should have been done.

Emma Hilton is (of course) spot on.

As she usually is.

A strong case? Where? I’d love to see it. I’m sure NICE would have considered it were it available.

Its a warning sign that our entire political system has become corrupted and ethics are no longer important. I have had my concerns about Civil Service for some time. Stealth must be a fairly easy way of infiltration. Our politicians are happy to let others do the work without real oversight, so under the radar and fingers crossed, no one notices. I am wonder how long this has been going on but I would think some sort concept of infiltration of major organisations such as NHS, Education (and a lot of other unionised workforces who are openly TWAW because this neatly allows take over without anyone really noticing what is happening).

This sounds a bit jumbled and I'm tempted to call myself a daft conspiracy theorist, but if I were the government, I would be taking a serious look at these tentacles and they would be causing me some concern.

I should have said 30+ years and should have added that if true anarchy and breaking down barriers of age can't get a foothold politically (via elections) it can highjack parts of political parties and use unions. The young will be happy to go along because radical is fun when you're young

Article in The Times today.

www.thetimes.co.uk/article/a79b75dc-94ca-11eb-8d6e-90b9b6b1f793?shareToken=6b16d911c4535888d3ac068420c88cff

NHS adviser to review hormone use on young

A warning over the health impacts of giving puberty blockers and cross-sex hormones to young people struggling with gender identity has prompted a call for a review of their use in Scotland.

...

The Scottish Intercollegiate Guidelines Network (Sign), which issues clinical advice to the NHS, is being asked to conduct a review amid concern that children as young as eight could be given the drugs.

Just catching up. I need a bingo card for that guardian article Warrior so glad the Times is producing some powerful antidotes with evidenced based articles.

I'd completely missed the criticism that Deb Cohen and Hannah Barnes attracted for the coverage of this on Newsnight - or that somewhere, deep in DC's thread, there's a mention that people are blaming her for the NICE report.

twitter.com/deb_cohen/status/1378099014340579331

I'm pleased to see some people among her supporters on that thread who've been fairly equivocal on a number of related matters previously. She's attracted support from some Guardian/Observer people.

Thanks for that link EmbarassingAdmissions I think Deborah Cohen and Hannah Barnes’ journalism will be what saves the BBC’s reputation when this is looked back on.

They bravely (because you have to be brave in this fucked up misogynistic climate) applied objective robust careful, balanced journalism to a modern day sacred unchallengeable politics rooted in male sexual entitlement. They revealed experimentation on vulnerable kids, no evidenced practice of benefit to them and a stack of possible physical and mental harms all funded by the taxpayer- plus as threads in here have told us a flourishing private medical operation acting apparently out with medical regulation. As NICE objectively confirm re lack of evidence.

The depressing thing is how politicians with equal access to all that information now uncovered have done fuck all about it. It’s up to crowd-funded legal cases (Keira Bell, Sonia Appleby, Ann Sinnott and EHRC, to try to reverse institutional capture as the actual legislative mechanisms we have already democratically got available to us apparently are not willing to be used.

It’s as though Tony Blair’s completely appropriate ‘We don’t do God’ has decades later, turned into a modern day deeply inappropriate ‘we don’t do ethics morals or safeguarding if it concerns women or children or impacts business’ a dangerous failure of legislative power and principled democratic politics.

I think that forces us to be as active as we can, we all have to make a fuss all the time to our MPs, copying in relevant Ministers. Hold their feet to the fire as publicly as possible...

You can see it with the multi faceted issue around gender identity dogma being uncritically adopted by public and private institutions and where that leaves women (especially lesbians) and children, around lack of protection of women’s spaces - prisons, sports, hospitals, schools even where legislation already allows protections, also with government failure to implement access to legal abortion in Northern Ireland, with government failure to regulate porn with age controls as they said they would, and which France has since introduced, with government failure to uphold the legal protections for minority groups that we already have- let alone attention paid to where these protections are lacking. Also with the government opposition to providing free school meals in the school holidays when it became obvious how food-poor so many families are, with Parliament’s failure to treat social media companies like regulated public utilities causing women’s access to the virtual public sphere to be compromised by rampant misogyny, with government failure to hold social media companies to account when they kick women off permanently for having opinions but men can send rape and death threats freely. The list we all need is much longer than that obviously and we all have our own lists..

I think Deborah Cohen and Hannah Barnes’ journalism will be what saves the BBC’s reputation when this is looked back on

I'd certainly hope they're called upon to give evidence to various enquiries and to chair relevant committees.