How We Arrived At Current Standards Of Care For Trans Medicine

JOHN DANKOSKY: This is Science Friday. I’m John Dankosky.

MADDIE SOFIA: And I’m Maddie Sofia. I’ve been reporting on the state of trans health care for a while now. And as I’m sure you’ve noticed, it’s a topic that’s increasingly dominating headlines. So far this year, conservatives in 16 states have moved to restrict or completely ban transgender kid’s access to gender affirming care. And 17 other states are considering similar restrictions. A handful, such as Missouri, even trying to restrict care for adults.

This political controversy has drawn increased attention to what’s called the standards of care. The standards of care are a set of guidelines written by the World Professional Association for Transgender Health, or WPATH. And it’s these guidelines that health care providers are encouraged to consult when providing gender affirming care to trans patients. We’re talking about things like puberty blockers, hormones, and surgery.

When a new version of the standards of care were released last fall, it was controversial and not just for the reasons you might expect. Some conservatives saw the guidelines as making transition too easy and seized the moment to further restrict transition related care. But some trans activists and health care providers felt the opposite, seeing the 2022 guidelines as too restrictive, creating unnecessary hurdles to lifesaving medicine.

But how do we get to a point where one document is supposed to shape all of trans medicine? How did we arrive at these current standards for care? Joining me now to give us some perspective on the history of how gender affirming care has evolved over time is my guest Hil Malatino, assistant professor of women’s, gender, and sexuality studies and philosophy at Penn State University, based in State College, Pennsylvania. Hil, welcome to Science Friday.

HIL MALATINO: Thanks so much for having me.

MADDIE SOFIA: OK, Hil, I want to start with a foundational figure in the history of gender affirming care in the United States, an endocrinologist named Harry Benjamin. He was a creator of the original standards of care to treat transgender patients. Can you give me a quick idea of who he was?

HIL MALATINO: Yeah, Harry Benjamin is a really important and fraught, but also deeply interesting figure in the history of trans medicine. He was basically the architect of transition related health care in the mid 20th century in the United States. And he worked alongside many other medical practitioners, actually, to develop what came to be known as the standards of care.

He’s a figure that was lionized by many as somebody who was sort of on the side of trans people in the 1950s and 1960s, and actually enabled a very small handful of folks to access transition related technologies, surgery hormones, et cetera.

But he’s been overwhelmingly critiqued, I think, in the following decades by trans activists who have understood his standards of care is deeply problematic, invested in a model of medical gatekeeping that really only enabled access to transition for folks who are understood to be passable post-transition. So to abide by very, very sort of stereotypical white, bourgeois Eurocentric gender norms.

MADDIE SOFIA: I want to talk to you specifically about mental health screening, right? That was a key component of whether or not Benjamin referred his trans patients for gender affirming surgeries or hormones, which by the way, is still part of the latest version of the standards. Talk to me about that initial purpose of that screening.

HIL MALATINO: There had already been a long history of understanding trans folks as deeply pathological and as suffering from a mental health condition that came to be known as transsexuality. So Benjamin was really invested in developing trans medicine as respectable.

And in only treating patients that would appear in their lives post-transition in ways that worked against this pathological understanding of trans people, and instead operated in the public sphere as respectable, gender conforming, heterosexual, and deeply normal appearing folks by mid-twentieth century standards.

So his emphasis on mental health screenings was really a way of vetting folks to make sure that they were as invested in the kind of respectability politics around gender and sexuality that he was, so he didn’t develop a bad reputation for offering trans related care.

MADDIE SOFIA: Right. So it’s partially about the reputation and conforming to this very binary gender presentation. And then another part of this motivation was that Benjamin and his colleagues feared patients would regret medical transitions and then retaliate against doctors who delivered their care.

HIL MALATINO: Yes.

MADDIE SOFIA: And we still see this idea of regret being a means to deny access to gender affirming care for trans folks today. But that fear has never coalesced as they imagined it, right?

HIL MALATINO: So the historical record bears out the fact that as access to transition related health care has spread, has grown very, very few people who transition surgically, hormonally regret those decisions. So that fear that really very much shaped the development of the initial standards of care in the mid 20th century has proven unfounded.

That said, we still have pretty rigorous standards of care. They’ve transmuted over the years. And in some ways, they’re much– they’ve produced a much more accessible medical model than Harry Benjamin had initially developed. But there still is gatekeeping in relationship to access to transition related care. And it’s still in large part circulating. That gatekeeping circulates around questions of regret, medical liability, and also, I would say still a certain respectability politic around transness.

MADDIE SOFIA: When this initially started, this was large, large majority, if not all cis doctors. We start to see a little bit of a change more recently. And that came in part because of the role community health clinics played in changing the dynamics of who’s making a decision about who can access gender affirming care.

HIL MALATINO: There’s actually a very long history, going back at least four decades, if not longer, of trans folks critiquing and protesting the imposition of the Benjamin Standards of Care. So they were initially codified beyond Benjamin’s clinic in 1979 by an organization that was initially named the Harry Benjamin International Gender Dysphoria Association. And that’s the organization that later became the World Professional Association for Transgender Health, which is the current organization that develops and set standards of care.

And from the moment that those initial standards of care were published in 1979, we see in trans activist archives, enormous pushback from trans people that called out those standards of care for being exclusionary insofar as they necessitated mental health evaluation often paid for out of pocket for long periods of time, three months or longer in many cases, years, before folks could access hormones.

And they also necessitated that folks engage in what was called, colloquially, the real-life test, which meant they had to live in their chosen gender for at least a year, if not two years or more, before they were given access to surgery, and in some cases, even given access to hormones at enormous personal cost. You can imagine transitioning on the job in 1982 and living in your chosen gender full time, which was the requirement of the real life test, ruined a lot of lives. So that being a barrier to access pissed a lot of people off, in short.

MADDIE SOFIA: Yeah. I mean, I can imagine. And eventually, trans people did become part of developing the standards of care guidelines. They were part of that process, right? Tell me about how that unfolded.

HIL MALATINO: There was enormous tension from what I’ve been able to discern in the archival record. So trans folks were very, very slowly included in HBIGDA and later WPATH, only because of enormous trans communal pressure that was placed on the doctors, where folks in multiple moments propose that the standards of care that WPATH established just be dismissed, and trans folks establish their own standards of care and become their own clinicians, provide care for one another outside of the sort of tyranny of the standards of care established by WPATH.

And they were very slowly and very reluctantly, from what I understand, brought on, first as community consultants, so not as members of the board of WPATH. And by the time we get to the mid 2000s, we see the first trans person occupying the chair of the WPATH board. That was Stephen Whittle in 2007. And that was after decades of trans communal pressure.

MADDIE SOFIA: So we have all of these issues of access that are very present in the systemic inequities in our health care system, right? And then we also have this gatekeeping that we’ve outlined that are kind of set out by the standards themselves. I’m wondering, can those standards be helpful?

HIL MALATINO: I think that some form of standards of care can be helpful, insofar as there are many medical practitioners that are relatively uninformed about trans-specific medicine. So having there be easy access to some sort of standards of care that can help. For instance, primary care doctors who are working with a trans patient, and they haven’t had trans patients before. But the current standards of care, I think, still have quite a ways to go.

And we’re also in a situation where WPATH is a transnational organization. So not only are they setting standards of care in North America, but all across the world. So it’s hard to think about what the field of trans health care might look like in the absence of WPATH.

MADDIE SOFIA: You study history. You have all this knowledge in the context of history. You’re obviously paying attention to what’s going on today. What lessons can we learn? And what do you hope to see in the future for this type of care?

HIL MALATINO: I think that going back to at least the early 1990s, there have been at least a handful of trans activists who have called for informed consent and the maximization of bodily autonomy as the standard for trans related medical care. So what that means, effectively on the ground, is folks should have all of the medical information that they need to make an informed decision at their disposal readily available.

And that when they make an informed decision, doctors should listen to that. And harm should be minimized, insofar as if people have contraindicating medical conditions. Those should be known and explored before going on a hormonal regimen, for instance, or undergoing surgery. But beyond that, the decision for transition is entirely in the hands of trans people themselves. And that’s a model that I have ascribed to for as long as I can remember, as long as I’ve been thinking about trans related medical care.

MADDIE SOFIA: I want to thank you so much for being here. We really appreciate you.

HIL MALATINO: Yeah, thank you so much.

MADDIE SOFIA: Hil Malatino, assistant professor of women’s, gender, and sexuality studies, and philosophy at Penn State University, based in State College, Pennsylvania. Big thanks to Cassius Adair for consulting with us on this segment. After the break, how the Cherokee Nation’s seed bank is saving heirloom seeds from being lost.