Some Science

Does anyone know where the DeclarationofHelsinki fits into this? Article 8 is about vulnerable people and would seem particularly relevant.

Absolutely. Some sort of patient incentive or payment? Alas not legal here also for ethical reasons. It’s a tough one - that Parkinson’s drug could save lives, but the company who make it, if it’s approved, will profit hugely. But then are we risking pressurising patients if there’s money on offer?

It’s a really difficult one.

I feel mixed about commercial companies using this data - I think it needs to be carefully monitored but a lot of research just wouldn’t be done without the commercial incentive. I remember hearing a talk by a chap charged with making academics commercial: apparently they were a nightmare about telling people about their research. It only took one short mention at an obscure foreign conference and any chance of patenting it went out the window. Academics like to talk and publish (they also know they wouldn’t see any commercial returns whereas their professional standing was based on publishing).

There used to be an all-encompassing Swedish database with everything linked in but I think it might have had to be halted.

Definitely. I do have ethical concerns about database usage for commercial gain (academic and research usage I’m Ok with.)

The big ancestry databases for example will all sell your data - one sold a set of complete genomes of a couple of hundred Parkinson’s patients for a few hundred million dollars to a pharmaceutical effort example. When you consider that a trial based on such data is twice as likely to succeed and that the average drug costs a billion dollars to bring to market, that’s a lot of cash. And those patients saw none of it.

If it’s well coded and totally anonymised and not for profit then Ok. A lot of patient data is hard to truly anonymise though.

Privacy protections are generally much lower in the States (emphasis on opting out of any sharing rather than opting in as in the EU, which has introduced some of the strongest privacy protections in the world).

There are a couple I think moss? there’s CPRD which includes various ones like GPRD? There are also smaller ones that are indication specific and larger ones like the Icelandic database which is fairly hard to get access to but amazing.

I now work in clinical trials so access to various databases is a bit of an issue - I think there are privacy concerns still with some aspects...

NBC have a good article about the study

www.nbcnews.com/health/health-news/study-finds-health-risks-transgender-women-hormone-therapy-n890031

Interestingly the paper also looks as if it compares the effect on HRT on women to the effect of cross sex hormones on men, finding that risks decrease with time for women on HRT but rise for cross-sex hormones on men. This is particularly concerning if the trend holds true over longer time periods given that younger and younger people are now taking cross sex hormones which they are then expected to stay on for life.

“This is a great study and I’m not surprised by its conclusions,” he* told NBC News. “But my concern is that doctors who are inclined to deny hormone therapy will use this study as a reason to do so.”

*Dr. Richard Greene, an associate professor of medicine and director of health disparities education at the New York University School of Medicine, is a primary care doctor who treats many transgender patients

I'm particularly interested that a 80-90% increased risk (from a relatively low baseline granted) is thought to be not a reason to think about stopping prescription for this group of patients, but any increased risk is considered a contraindication for people like my daughter who are told they can't go on the pill despite months of acute pain (because of migraines with aura) even when there is nothing else on offer by way of treatment.

Bowl there is already an NHS database that is used for research.

Despite its title WPATH is just an American pro-trans activist organisation. It is not WHO or anything like it.

Which bulks out its citation lists to make it look more impressive by citing its own journal repeatedly on all its papers.

50 is young!!

Have a lovely birthday

GPs vary massively in how accepting they are of HRT. If you’ve got a good one then long may they remain!

As you’re so young then they are probably Ok with annual checkups :)

Are those trans of both genders closely monitored throughout their lives once on hormones?

I truly hope so. The main issue is that no one has a lifetimes worth of data on these groups of people with big enough datasets to draw any conclusions. Effectively it’s flying blind. We just don’t know.

Medically they are a vulnerable population with unique needs.

The need to screen and treat on the basis of biological sex PLUS hormonal background is important.

Puberty blockers should not ever be used on healthy minors for gender questioning - that’s my personal opinion and one I doubt I’ll be swayed from.

Databases - tricky one in the Uk there’s a move to link up all patient records and have databases that can be used for research. Coverage is patchy, everyone is still fighting over who gets access to what and how to anonymise properly. Basically they should ask consent to use any of your data that cannot be anonymised. There are huge ethical issues over who has access and it’s all a bit of a balls up.

nanweat seriously? A so-called systematic review that includes case reports, narrative reviews, ‘as well as papers from select bibliographies’. Hardly a systematic review!

How old are you rose? (No need to answer!) basically at 50 they’re fine with it, at 60 it depends on your personal risk factors and at 70 they will likely get antsy about it.

Remember that’s replacement of your hormones - back to the physiological levels your body was used to. It’s not extra/the wrong sex etc.

Transmen are not required to get a hysterectomy - the advice has been that they may be at greater risk/requirement because testosterone can induce a state that’s like PCOS. It can also increase the risk of endometriosis and fibroids so the main physical reason transmen have them seems to be pain related.

Atrophic cells in an environment with altered hormone levels - that doesn’t ring any alarm bells nanweat?

One would expect transmens breast cancer risk to be averagely lower simply because of the mastectomy rate.

The prostate cancer rise in interesting (and I’ve read that paper and it’s an unusual aggressive type of I remember correctly) but at this stage I don’t think there’s enough solid evidence either way.

What do you think about cardiovascular risk? That’s the main risk with women and exogenous hormones.

Results:

Transfeminine participants had a higher incidence of VTE, with 2- and 8-year risk differences of 4.1 (95% CI, 1.6 to 6.7) and 16.7 (CI, 6.4 to 27.5) per 1000 persons relative to cisgender men and 3.4 (CI, 1.1 to 5.6) and 13.7 (CI, 4.1 to 22.7) relative to cisgender women. The overall analyses for ischemic stroke and myocardial infarction demonstrated similar incidence across groups. More pronounced differences for VTE and ischemic stroke were observed among transfeminine participants who initiated hormone therapy during follow-up. The evidence was insufficient to allow conclusions regarding risk among transmasculine participants.
Limitation:

Inability to determine which transgender members received hormones elsewhere.
Conclusion:

The patterns of increases in VTE and ischemic stroke rates among transfeminine persons are not consistent with those observed in cisgender women. These results may indicate the need for long-term vigilance in identifying vascular side effects of cross-sex estrogen.

I can't see the full paper so it's not entirely clear what criteria were used for the trans or reference groups, but I assume 'cisgender men/women' does not refer to these individual's beliefs and simply references data on the specific health outcomes for men and women in the Kaiser Permanent dataset compared to those individuals who have identified as transgender (the limitation showing that it's not a completely 'clean' comparison of individuals taking cross sex hormones to those that have not taken any hormones (although perhaps women taking HRT were excluded).

Despite its title WPATH is just an American pro-trans activist organisation. It is not WHO or anything like it.

Here is a link to the abstract about the study from Roase's link. It's only just been published and so is not referenced in the article that nanweat has linked to, which appears to be about a review of studies.

www.ncbi.nlm.nih.gov/pubmed/29987313

What about risks to children / teenagers who do not now go through normal puberty and then take cross- sex hormones? Are they not at increased risk?

Well that's the million dollar question isn't it.