Square Pegs, Round Holes: Building Trans-Inclusive Health Care

transgenderFor the first time in history, trans persons are being recognized in the mainstream and their identities are being embraced like never before. Laverne Cox’s cover story for Time and Amazon Prime’s original series Transparent winning four Emmys are examples of this recognition.

Kinda.


Today is National Transgender HIV Testing Day.


Truth is, the trans persons in the media are not representative of the norm. The findings of the National Transgender Discrimination Survey — a survey that collected responses from more than 6,000 transgender and gender-nonconforming individuals — give a clearer picture, and it’s not pretty. The authors of this study found trans persons faced adversity in almost all aspects of life, from experiencing double the rate of unemployment to suffering through a high rate of violent attacks (26 percent and 10 percent of the respondents reported being physically and sexually assaulted, respectively) because of their gender identities. Among all these results, I found one to be particularly unsettling:

“Respondents reported over four times the national average of HIV infection, with rates higher among transgender people of color.”

To me, a person born after the AIDS epidemic of the ’80s and privileged with a world that now has readily accessible condoms and HIV prevention medication (i.e., Truvada), HIV seemed like a relic of the past. Examining the amount of new HIV infections in the cisgender population (0.4 percent for females and 1.2 percent for males), this is an easy assumption to make. I was wrong. Other studies echoed the large disparities of HIV incidence and prevalence in trans persons. One systematic review uncovered four studies that found that 24.8 to 30.6 percent of male-to-female (MTF) transgender persons tested positive for HIV. Another study — conducted in Ontario, Canada — sampled 433 trans persons and found 7 percent of female-to-male (FTM) transgender persons and 19 percent of MTF persons had a high-risk sexual experience in the last year. Yet another found that 35 percent of MTF persons (and 2 percent of FTM persons) had HIV, and again, persons of color — in this case, African-American identified individuals — were at a greater risk. Indeed, in this study, African-American trans persons (FTM and MTF) were approximately three to 12 times more likely to have HIV. Given these data, the cynic in me questions, “Is anyone even trying to prevent HIV in trans persons?”

Of course, many persons and organizations are trying. In 2010, more than half of HIV testing for trans persons took place outside health care facilities (e.g., a pride event), so trans persons received care without having to deal with the discomfort of medical facilities — places where approximately half of trans persons have had to teach their doctors about trans identities and nearly a fifth of trans persons have been refused care. Still, prevention requires more than testing. To treat an at-risk group, interventions have to identify those persons, understand what puts them at risk, and connect them with resources they can use. For HIV prevention in trans persons, interventions have struggled to meet all of those requirements.

Because trans persons fear social reproach — or worse, physical violence — many may not feel comfortable disclosing their identity. Others may not be marked as trans because doctors’ offices, hospitals, county public health offices, and the like fail to ask the right questions. On an intake form, there is usually a question asking about a person’s gender, but typically, there are only two options listed (male and female). Moreover, even when given the opportunity for free response, the question “What is your gender?” lacks clarity. Is the form asking for the person’s gender (one’s sense of being male, female, both, neither, or anything in between) or their sex (referring to one’s combination of genetics and physical anatomy at birth)? This is no issue for cis (i.e., not trans) persons because their sexes and genders are concordant. Conversely, when a trans woman (assigned male at birth, but identifies as female) checks in for a medical appointment, she may endorse male (her sex assigned at birth) or female (her gender), and if she checks the latter, the physician lacks a world of information about her. She may report that she engages in sexual acts with men, which is a heterosexual encounter that, physically, may be no different than one between two gay-identified men. Thus, not knowing her patient’s trans status, the physician will weigh the risk for HIV as though her patient were a cis woman (remember that 0.4 percent risk?) and instead of ordering an HIV test, will focus her medical examination on why her patient has never had a period. Similar oversights can occur for all types of trans persons — especially those who identify outside the gender binary entirely. For instance, a genderless person — being neither female nor male — cannot fit into our heuristics of gay or straight, and therefore, any extrapolation of their risk behaviors is most likely moot.

When it comes to understanding trans persons, our society is not unlike a pre-schooler attempting to fit a square peg into a round hole. If we cannot identify trans persons and fail to provide safe ways in which trans persons can identify themselves, we may never know they exist. If we don’t know they exist, we don’t know what puts them most at risk. Being marginalized undoubtedly has a hand in their adverse health outcomes, and studies have identified some high-risk behaviors, such as sex work and high partner counts. However, those studies contain samples that are not representative of the trans population, and although those behaviors identified may be similar to risk behaviors in other populations, similar interventions for HIV prevention are not guaranteed to produce analogous results. According for the Centers for Disease Control and Prevention, most interventions for trans women show modest results, but again, the samples are small, and the studies lack control groups. Hence, it is impossible to determine if the intervention is responsible for the decrease in behaviors linked to contracting HIV, or if another factor is the cause, or if the improvements happened by random chance.

We don’t know who is trans, and even though we have some inclination toward understanding, we don’t know what behaviors or other conditions put trans persons at risk — proportionally, far greater risk than any other group — for HIV infection; thus, we don’t know what type or level of intervention will work.

Like all of history before us, we fail to recognize the trans population in full, and as a consequence, we don’t know how to help them.

Yet.

We may not know. We may be completely clueless in many aspects of trans care, and in many instances, we’re just doing everything we can think to do — funding grants for research, establishing condom distribution programs, revising medical intervention methods, using technology to educate and assist community organizations, etc. Nonetheless, given the complexity of HIV prevention for transgender people, many may think any attempt to fix this problem is hopeless and destined for failure.

But then again, many people thought the same thing about HIV.

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