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The Sorry State of Transgender Health Care

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I often write about how transgender people who need to access hormone therapy and/or surgery (not all do) must go through one of the most rigorous pre-qualification processes of any medical procedure. But while medical and mental health professionals have focused much attention on setting the hurdles of qualification, relatively little has been focused on either the reality of the qualification process or what comes after it.

One of the foundations of the process is that a therapist must determine who is qualified. Surprisingly, there is no process to certify therapists to do this. In fact, it's rarely covered in university social work curriculums.

One attendee of a recent training at the Massachusetts Department of Public Health expressed disbelief to have never been exposed to the qualification process, or any transgender issues for that matter, in her studies. My younger stepdaughter, a recent grad of another masters program in social work, had the same experience.

Therapists who do develop a specialty in gender have generally done so on the job, but there are few of them in the United States. For transgender folks not lucky enough to have a gender specialist nearby, some can afford to travel the long distance to see one. Many others will end up educating a nearby therapist who has never worked with transgender people on how to qualify the very person doing the educating.

And some transgender people will shun the process altogether, obtaining hormones over the Internet, administering them without medical supervision in doses that can be unhealthy, possibly sharing needles in the process.

And then there's transgender genital reconstruction surgery, also called sex reassignment surgery (SRS). Only a few surgeons in this country specialize in it. Those who do may have started with a brief period observing another doctor before opening up shop, and all perfect their procedures on the job. They rarely talk to each other to compare notes.

Of course, SRS and most other transgender health care is generally not covered by medical insurance. This means that many of us are forced to spend our life savings on surgery, and when a problem develops, no funds remain to travel back to the specialist for treatment. We are stuck going to a local doctor who is virtually guaranteed to not know what to do to fix the problem.

My surgeon tells his patients that his procedure rarely has complications. I learned early on that he really means "complications that he can't handle." In my case I had two -- the need for a urinary catheter for three weeks post-surgery due to swelling, and the need for a subsequent procedure to remove excess tissue that became evident when my swelling went down. But those problems are long gone and I'm ecstatic about the result.

Yet my SRS complications pale in comparison to the rare fistula that Amy Hunter is dealing with. She has since undergone several additional procedures near her home and is still hopeful for a resolution. Yet her doctors are flying by the seats of their pants because the only existing guidance is for dealing with fistulae in natal females.

Hunter detailed what she has learned about the medical community in her recent Bilerico.com post:

There is no curriculum, no specialization, no residency and no board certification for SRS surgeons. No medical texts detail the procedures. Techniques for remedial care of complications are not well developed. Ignorance, discrimination and arrogance on the part of specialists often block those needing specialized post-SRS care.

This is not surprising when you consider the bias against transgender people in the undergraduate psychology text Understanding Abnormal Behavior by Sue, Sue and Sue. The current edition from 2008 cites outdated prevalence numbers that are severely understated. The text says that most research shows that people regret their surgeries (the vast majority do not), and discounts surgery in favor of highly controversial reparative therapy, which claims to "cure" a person of being transgender. How many other textbooks are like this?

With bias like this as the norm in the medical community, is it any wonder that college faculty have difficulty justifying inclusion of anything other than a brief mention of transgender health issues in curriculums?

Perhaps consequentially, little research is done on transgender health. It's rare for an article to appear in the mainstream New England Journal of Medicine, with much of the little research that is done being published in the much lesser known International Journal of Transgenderism.

What to do? So much energy goes into setting high hurdles of qualification, hurdles which some believe are unnecessarily strident. Why not refocus some of that energy on educating the providers of transgender care, and on providing follow-up care?