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[personal profile] auntysarah posting in [community profile] trans
Crossposted from my own journal (and in LJ - sorry if you see this 3 times), because I think it's relevant, and hopefully it'll help to seed the community with a bit of discussion. It's also a bit UK-specific in some respects. I beg your indulgence on that.

I've been wanting to write about this for a while, because something's been increasingly bugging me.

The Nuffield Council on bioethics are conducting a consultation about the effects of the Internet on medicine. One of the things they're looking at is the supply of prescription drugs over the Internet. Professor Christopher Hood, of Oxford University, who is heading the consultation tells the BBC:

Cutting out the GP may sometimes be a good thing, providing us with convenience, privacy and control over our health.

But there is not much regulation of these new services and we may be getting information that causes more harm than good.


I'm guessing one of the things they won't really give much thought about is the way Internet pharmacies are used by transsexual people, especially transsexual women, and that if legislation does come out of this, I sadly suspect it will be legislation which screws us over.

I can't speak much about testosterone; it's outside my experience and being a controlled substance, is affected by supply issues which do not affect oestrogen. At present, drugs which are no controlled substances, but which are prescription-only medicines are legal to import into the UK for personal use, and this includes oestrogen based HRT, the main component of a male-to-female hormonal transition, as well as some antiandrogen drugs, to control testosterone, and progestins, the use of which in trans women is the subject of some debate amongst the medical community (more on this later).

I strongly believe that Internet pharmacies are of vital importance to trans women in the UK. They serve both a practical purpose and a symbolic one. By providing an easily accessible supply of hormones, at least those who can afford to shop with them (the more more reputable ones charge about twice as much for HRT as, say, Boots would for a private prescription - one can obtain a transition dose from an Internet pharmacy known to me for around 20 pounds a month), they dramatically weaken the power of gender specialists to control access to these drugs. Gender specialists have never had a monopoly on supply - there have always been other ways to get hold of oestrogen, such as "borrowing" birth control pills from a cis woman friend, or going on a trip to a country where HRT can be obtained without a prescription, but the Internet pharmacies make the sort of drugs prescribed by the gender clinics readily available to anyone with a credit card in a way they have not been before.

This is significant because, for many of us, transition comes at a point where gender dysphoria has become utterly intolerable, after years of increasingly desperate attempts to ignore it have come to naught, and needs some kind of immediate treatment. What happens when one goes to see ones GP, at least in most of England, is a very long way from providing any kind of immediate relief of the problem. Let's imagine that you, the reader, are someone who has reached the end of their tether with gender dysphoria - you're perhaps a trans woman on the cusp of male pattern baldness issues. Your local Primary Care Trust will see you transitioning via the main NHS gender identity clinic at Charing Cross Hospital in London. This is how it works in theory:

If your GP is a "transphobic asshat" (technical term), they will fob you off. Either they will be downright hostile, in which case you should seek another GP immediately, or they'll just keep stalling you. In the latter case, it may take a few months to realise this is going on, especially if you are unfamiliar with the process. I used to work on a transgender helpline, and spoke to people who had been stuck at the GP stage for years and lacked the knowledge or means to make progress.

If you are, on the other hand, spectacularly lucky and hit the jackpot, you will get an understanding GP who has prior experience and is highly sympathetic, knows exactly what to do, knows it will take a while, and is willing to give you HRT in the meantime. This scenario is not unheard of, merely vanishingly rare.

What's more likely to happen is somewhere in between - your GP will not know what to do, and so will have to go and find out. They'll then find out that they can't actually refer you to the Charing Cross GIC, because Charing Cross GIC don't accept referrals from GPs. You need to be referred by local mental health services, for initial evaluation.

Hopefully you get a letter inviting you to come and see local mental health services. Hopefully the appointment isn't too many months away. You then attend a psychiatric outpatient session. Again, what happens depends on the attitude of the psychiatrist you get. In the "Transphobic Asshat™" scenario, they'll probably try to cure you. This could take years before they, or you, finally give up. Hopefully they'll realise they're just a middle-man/woman, and refer you on to the people you wanted to see in the first place. There's something particularly Kafkaesque about this. If the local mental health people know nothing about gender identity issues, they're probably bringing no extra value to the process over and above that provided by your own GP. If they do have enough expertise to diagnose gender identity issues, why do they need to refer you to a central gender identity clinic at all? Surely they could just do the gender specialist bit themselves, and sub-contract out stuff like surgery to specialists. This is the system that Norfolk have in place, but having enough of An Clue™ to realise this seems to be, like the uber-supportive GP, vanishingly rare.

So you navigate the local mental health services, and they refer you to Charing Cross GIC. After a few months you get an appointment. Now contrary to various bits of lore, the specialists at Charing Cross GIC are not five-headed monsters who are out to make your life as difficult as possible - they do want to help, but they have their own particular procedures and, being part of a bureaucracy as large as the NHS, are perhaps not as speedy in reacting to changing times as some of us might like. You go along and see them, and are told that they don't prescribe hormones on the first appointment. You'll be assessed and perhaps get a prescription on the second appointment, as long as you're willing to live completely as a member of your target gender (without any medical assistance) in the meantime. If you're lucky, the second appointment will be 3 months later.


In Scotland the situation is very different. You can self-refer to a GIC there, but I digress. Remember how desperate you were at the start of this? If you find your way to an online trans support community and get chatting (and manage to work out that the whole "Charing Cross are five headed monsters who will eat you" line is more grounded in legend than reality), you may come to realise quote quickly that it's going to be months, and not a few of them either, before you get what you want - hormones.

It could be years.

At this stage there are a few very tempting options that open up. If you have the money, the first is to think, "Ah fuck it, I'm going private". After seeing a locum GP who clearly wanted me to just go away, this is what I did. By the time I went back to see the head of practice (who, I have to say, was utterly fantastic and remains so), I already had an appointment to see a private specialist in London. This was mid-November, 2005. On January 4th, 2006, I had my second specialist appointment, and had had five or six psychotherapy appointments, and was prescribed oestrogen.

Even if you can't afford surgery privately (assuming you want it), this is still a fairly good way to get started, get your documents officially changed, and get an HRT script while waiting for the NHS to do its thing. The Charing Cross clinic actually seems fine with this - if you have the right documents they'll probably slot you right in to the relevant point in their 2 year "real life experience" and offer you surgery at the appropriate time. This is a good way of cutting almost a year off the starting time at the expense of less than a thousand pounds.

But there's an even cheaper and quicker way. You don't have to hang around in trans communities very long to find out what drugs people are taking, and more importantly, where you can source your own. The quality of the advice you get will be somewhat random, and you could end up taking something wildly inappropriate. If you're lucky, and you do your homework well, you probably end up sourcing a regular supply of estradiol valerate, 2mg pills from Inhouse Pharmacy and when you arrive at your first appointment with Charing Cross, you're probably taking two or three of these pills at regular intervals during the day (did you see what I did there? I just broke a taboo. Of course, nothing I wrote here constitutes any kind of medical advice - I am not qualified to give it, and am merely commenting from my personal observations of what I know some of my friends to have done). Again, contrary to popular lore, they're not going to bite your head off for this - you may not even get a lecture.

And this is my biggest problem with the "I can't take this any more, I need help!", "OK, please spend the next year fighting the system and waiting around before we prescribe anything" approach which so many patients approaching their GP wanting help with transition have to endure. Because there is no concept of "triage", where someone would get some sort of initial relief to allow them to hold on while they wait, and wait, and wait, the trans community ends up doing part of the gender specialists' jobs for them.

And, as I point out above, we, as a community, are not medically qualified to do that job. Lecturing us on the supposed dubious quality of Internet supplied drugs, and the dangers to health of unmonitored self-medication is not a useful way of trying to approach this problem Deciding to try and shut down the Internet pharmacies (which, of course, will result in the more reputable ones being shut down, leaving dodgier sources around to make the "dubious quality" thing a self-fulfilling prophecy) is not a useful way of trying to approach this problem. Doing something about the reasons why trans people turn to self-medication is a useful way to approach this problem.

Failing that, without the Internet pharmacies I guess we go back to a world where trans women end up scrounging birth control from sympathetic friends.

By way of an epilogue, I'll answer a question that some readers may have, namely, do I, [personal profile] auntysarah self-medicate? Yes I do. In addition to my regular prescription for estradiol valerate, 2mg, twice daily, I have a little stockpile built up using said Internet pharmacies. This provides a nice safety net should I be unable to get my regular prescription at any point (I have to get one every 4 weeks - local policy is not to give out 12 week scripts, because they may waste drugs in the event they're not all needed - it's nice to know the local Primary Care Trust takes such concern over the disturbing possibility of my bollocks growing back). I also sometimes like to take a bit extra because oestrogen is fickle, and sometimes I just need six or eight milligrams.

And chocolate.

And red wine.

I also take progestins, usually Provera. This has some nice effects, when used in moderation, in that it boosts my energy levels and gives me a bit of an edge with my sex drive (without it I quite often don't have a sex drive). It probably does this because part of it converts to testosterone in the body. I did bring this issue up with my own gender specialist (no progestins in trans women ever, full stop, end of story), who was not receptive to the idea of looking into giving me any kind of testosterone supplements. I could probably get them via Charing Cross if I wanted to wait a year, and put up with an indeterminate number of people asking if I masturbated while wearing lingerie as a teenager (truthful answer - yes I did. If that means I'm really a man, or an autogynephile then so is [livejournal.com profile] the_local_echo, my wife, and I suspect several million other cis women in this country), but that's only testosterone. Progestins are right out.

The path of least resistance seems to be to just carry on buying the odd bit of Provera. If Internet pharmacies get shut down, I'll confess my sins to my GP and throw myself upon their mercy (making sure I get an appointment with a female GP), at which point I rather strongly suspect they'll just write me out a Provera prescription, no teenage masturbation habit disclosure required.

But my GP is awesome like that.

Anyway, what was the point of all this? Oh yes - if you have an acute broken leg, you might generally expect to get some sort of first-aid before getting the treatment which will fix the problem - something to dull the pain at least.

I'd just like the same consideration given to people with acute gender dysphoria. This shouldn't be a radical plea, but it will probably be seen as one, and I feel really quite depressed and angry about that.
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