Transgender healthcare help
February 28, 2019 6:42 PM Subscribe
HI ! I’m doing an important presentation for health care providers on current transgender medications and treatment approaches. If there’s anything you feel should be included or things i should look at please let me know ! Also what are things you wish your doctor/nurse/pharmacist knew about your healthcare
Basically I’m trying to change the policy so primary docs or psychs can provide HRT without having to punt it to another provider because they are too scared and feel like they don’t know what they are doing. Also i want to make a case for why the Va should pay for surgery.
And obviously it’s not your job to inform me or the docs so if you’d rather point me to specific online forums or anything’s that’s been helpful for you that would be amazing and I’d really appreciate it !
Basically I’m trying to change the policy so primary docs or psychs can provide HRT without having to punt it to another provider because they are too scared and feel like they don’t know what they are doing. Also i want to make a case for why the Va should pay for surgery.
And obviously it’s not your job to inform me or the docs so if you’d rather point me to specific online forums or anything’s that’s been helpful for you that would be amazing and I’d really appreciate it !
Best answer: Dr. William Powers, a family medicine doctor with a practice in Michigan, has a pretty comprehensive powerpoint presentation aimed at persuading more physicians to provide healthcare to transgender patients. He is one of the few doctors in the state of Michigan that prescribe hormones on an informed-consent basis and is notable for his advocacy in trans health in the Metro Detroit area. Link is here.
posted by sevenofspades at 7:28 PM on February 28, 2019 [3 favorites]
posted by sevenofspades at 7:28 PM on February 28, 2019 [3 favorites]
Best answer: It's worth noting that the meaning of "informed consent" as used in the trans community is not how "informed consent" is used by medical providers, who will all tell you they obtain informed consent for treatment. Traditionally, one needed a referral letter from a therapist for hormones, which presented all kinds of access problems. Various clinics* started experimenting with what they called an "informed consent model", i.e. obtaining informed consent and not requiring the therapist's letter.
There's a thing called the Standards of Care which is an attempt to write down a consensus on best practices.** By the time the last version of the SoC was written (it was published late 2011, IIRC), things were kind of at an impasse--some people (particularly the ones with power) wanted to insist on letters, others didn't. So v7 of the SoC is this odd compromise--if you want to read it as requiring letters, you can, if you want to read it as not requiring letters, you can. (There's actually a grudging explicit "informed consent models conform to the above guidelines, even if we don't like it" statement because the SoC is what gives people leverage with their insurance companies.) We're currently in the odd stage again where reality on the ground in the US is significantly more progressive than what's in v7 of the SoC and it's reasonably likely someone can find a provider prescribing hormones on an informed consent basis (Planned Parenthood does in a number of regions, but not every PP region serves trans people). I'm no longer plugged in enough to know what is expected in v8 (which is coming down the pipe).
*I'm not sure when they started, but Tom Waddell, Callen-Lorde, Whitman-Walker and the Mazzoni Center (maybe Lyon-Martin, I don't remember) were working on an informed consent basis by at the latest 2005/2006.
**The SoC aren't rules and there are competent and experienced providers that disagree with it. If you encounter a provider requiring something more onerous than a conservative reading of the SoC, you should, however, seriously question them.
posted by hoyland at 7:34 PM on February 28, 2019 [4 favorites]
There's a thing called the Standards of Care which is an attempt to write down a consensus on best practices.** By the time the last version of the SoC was written (it was published late 2011, IIRC), things were kind of at an impasse--some people (particularly the ones with power) wanted to insist on letters, others didn't. So v7 of the SoC is this odd compromise--if you want to read it as requiring letters, you can, if you want to read it as not requiring letters, you can. (There's actually a grudging explicit "informed consent models conform to the above guidelines, even if we don't like it" statement because the SoC is what gives people leverage with their insurance companies.) We're currently in the odd stage again where reality on the ground in the US is significantly more progressive than what's in v7 of the SoC and it's reasonably likely someone can find a provider prescribing hormones on an informed consent basis (Planned Parenthood does in a number of regions, but not every PP region serves trans people). I'm no longer plugged in enough to know what is expected in v8 (which is coming down the pipe).
*I'm not sure when they started, but Tom Waddell, Callen-Lorde, Whitman-Walker and the Mazzoni Center (maybe Lyon-Martin, I don't remember) were working on an informed consent basis by at the latest 2005/2006.
**The SoC aren't rules and there are competent and experienced providers that disagree with it. If you encounter a provider requiring something more onerous than a conservative reading of the SoC, you should, however, seriously question them.
posted by hoyland at 7:34 PM on February 28, 2019 [4 favorites]
Best answer: what are things you wish your doctor/nurse/pharmacist knew about your healthcare?
There's a lot of menstruation-and-menstruation-adjacent things that are currently shrouded in confusion. Many trans women who have been on hormones for awhile begin to get a menstrual cycle -- of course they don't bleed, but some experience other period symptoms (bloating, breast pain/swelling, stomach discomfort, and mood swings) on a monthly, cyclical basis.
Some doctors and nurses claim that this is impossible, but it's a real experience that's happening and if doctors could acknowledge that and work with patients to alleviate symptoms instead of insisting they can't be happening, that would be great.
posted by gloriouslyincandescent at 8:36 PM on February 28, 2019 [6 favorites]
There's a lot of menstruation-and-menstruation-adjacent things that are currently shrouded in confusion. Many trans women who have been on hormones for awhile begin to get a menstrual cycle -- of course they don't bleed, but some experience other period symptoms (bloating, breast pain/swelling, stomach discomfort, and mood swings) on a monthly, cyclical basis.
Some doctors and nurses claim that this is impossible, but it's a real experience that's happening and if doctors could acknowledge that and work with patients to alleviate symptoms instead of insisting they can't be happening, that would be great.
posted by gloriouslyincandescent at 8:36 PM on February 28, 2019 [6 favorites]
I was just reading this How To Find A Trans Friendly Doctor blog today.
posted by ethical_caligula at 11:40 PM on February 28, 2019 [1 favorite]
posted by ethical_caligula at 11:40 PM on February 28, 2019 [1 favorite]
This is sort of an aside, but all as a Social worker who does thousands of screenings in healthcare setting all questionnaires need to address and use trans inclusive language and issues. All of them. In triage. At the doctors office. EVERYWHERE.
Every staff member needs to ask every question appropraitely and every time.
You don't know. You can't know without asking.
posted by AlexiaSky at 7:59 AM on March 1, 2019 [4 favorites]
Every staff member needs to ask every question appropraitely and every time.
You don't know. You can't know without asking.
posted by AlexiaSky at 7:59 AM on March 1, 2019 [4 favorites]
Not specifically trans-related, but this JAMA-published study found that patients were more likely to disclose sexual orientation or gender identity using written forms than verbally. The researchers also noted that being able to opt-out of reporting and staff training was important.
posted by GenderNullPointerException at 8:16 AM on March 1, 2019 [2 favorites]
posted by GenderNullPointerException at 8:16 AM on March 1, 2019 [2 favorites]
I'm not trans, but have several friends who are intersex or are in various stages of transitioning. It is fucking terrifying for them to go to the doctor, and so they often don't, until they are very very sick. There are so many people to deal with - from the person scheduling the appointment, to the front desk checkin, to the nursing staff / radiology / etc - and all it takes is one snicker or comment to make a patient feel unsafe.
posted by wearyaswater at 11:06 AM on March 1, 2019 [6 favorites]
posted by wearyaswater at 11:06 AM on March 1, 2019 [6 favorites]
I'm venting a bit, but you need to understand just how low my expectations are. My most rage-inducing experience was with a provider, who, after telling me how culturally competent they were and how I was so fortunate to live near this clinic, googled the brand of testosterone I was using in front of me because they'd never heard of it, never mind knowing its particular dosing pitfall. (Never prescribed it, I would understand--it's unfashionable for a reason and I was only using it because of shitty insurance--but literally never heard of it.) That clinic also told me "people should know better these days" when insurance denied a claim for a pap smear due to my gender marker. Did they offer to recode and add (the gross) "history of transsexualism" to see if the claim would go through? Nope, they threw up their hands and I appealed on my own. (Did they have any concerns about telling my insurance I was trans in the first place and code everything else as "transsexualism"? Nope--they hadn't been doing this long enough to know people have reason to be cautious about that.*)
My anger about that surpasses the therapist who told me I was a confused lesbian (I'm not attracted to women), the provider who commented on my leg hair (as an indication of the "success" of my transition?), the provider who wanted to know my old name for no good reason, the providers who've been obviously uncomfortable with the fact I'm trans when they'd assumed I was cis, etc. Basically, I expect to be treated poorly and have providers' expectations of gender and trans people projected on me. That I can handle (though not everyone can, obviously). Just don't tell me how up-to-date and knowledgeable you are when you can't back it up. Know that I have years and years of experience of systems not working for me and meet me where I am, which is expecting another disaster.
Don't assume what goes for one trans person goes for another. I once knew a provider wasn't for me because when they asked for a preferred name, after noting it down, said "We'll make sure you don't hear that name [meaning my legal name] here", as if my legal name was this dirty thing. I don't have a "dead name". ("dead name" wasn't a term when that exchange took place.) I have a name I no longer use that I hold close to my heart. Many people are the exact opposite and rejoice at a provider saying "We'll be sure not to use your dead name." And don't assume your perception of someone's gender conformity (or lack thereof) says anything about their attitude towards gender, their transition history or plans and so on.
posted by hoyland at 4:00 PM on March 1, 2019 [3 favorites]
My anger about that surpasses the therapist who told me I was a confused lesbian (I'm not attracted to women), the provider who commented on my leg hair (as an indication of the "success" of my transition?), the provider who wanted to know my old name for no good reason, the providers who've been obviously uncomfortable with the fact I'm trans when they'd assumed I was cis, etc. Basically, I expect to be treated poorly and have providers' expectations of gender and trans people projected on me. That I can handle (though not everyone can, obviously). Just don't tell me how up-to-date and knowledgeable you are when you can't back it up. Know that I have years and years of experience of systems not working for me and meet me where I am, which is expecting another disaster.
Don't assume what goes for one trans person goes for another. I once knew a provider wasn't for me because when they asked for a preferred name, after noting it down, said "We'll make sure you don't hear that name [meaning my legal name] here", as if my legal name was this dirty thing. I don't have a "dead name". ("dead name" wasn't a term when that exchange took place.) I have a name I no longer use that I hold close to my heart. Many people are the exact opposite and rejoice at a provider saying "We'll be sure not to use your dead name." And don't assume your perception of someone's gender conformity (or lack thereof) says anything about their attitude towards gender, their transition history or plans and so on.
posted by hoyland at 4:00 PM on March 1, 2019 [3 favorites]
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The main guide for providers these days is the UCSF one: Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People.
posted by hoyland at 7:11 PM on February 28, 2019 [11 favorites]