Will the Doctor See Us Now?

Three weeks ago, over coffee and runny eggs, my friend Bamby Salcedo shared her plan of storming the stage of the U.S. Conference on HIV/AIDS.  As we talked about history, strategy and tactics, Bamby focused on three points: 
• Trans and genderqueer individuals are disproportionately impacted by HIV.
• The National Strategy on HIV/AIDS barely acknowledges the existence of trans and genderqueer communities, and certainly did not include an aggressive strategy to support these communities. 
• This is morally impermissible, and it is our obligation to insist on reconciliation. It’s crucial to use voices, even and perhaps especially, when we’re not on the agenda.

A few hours later that afternoon, she led a cohort of activists on stage. Conference organizers graciously and smartly handed over the microphone and ceded time to hear their demands. Over the last few weeks, the action has come up in my conversations with journalists, activists, movement leaders and friends.  They have written articles, debated impact, questioned the broader strategy, applauded, and critiqued.  More than a few rolled their eyes and ask some variation of ‘to what end.’  But all of them, every single one, had a series of conversations they would not have otherwise had about trans women and HIV. If silence indeed equals death, than these conversations represent life affirming progress to celebrated and built upon.

One of the ways I believe it is crucial to build upon this narrative is to address another HIV crisis quietly unfolding within trans and genderqueer communities — a crisis that is rarely, if ever, acknowledged or even named.  The evidence is scattered and lacking, but how could it be otherwise given that, as with trans women, bisexual men, genderqueer people, and others, the community it impacts is neither counted nor considered by those tasked with recognizing health disparities. But for many of us, it is without question that HIV is disproportionately and increasingly affecting trans men whose sex partners are not limited to cisgender women.

The reasons that underlie this crisis are complex and varied, but the consequences remain as simple and profound as the first time an HIV activist scrawled the phrase “silence equals death.” Nowhere is the danger of this silence more apparent than in the ways in which the medical community – from pharmaceutical companies to doctors in local health clinics – routinely fail to educate, support, and treat bi, pan, fluid, queer (b+) trans men at an elevated risk for HIV. On the final day of #biweek, it seems appropriate to reflect on this dynamic and identify some of what can be done to change it.

The Dangerous Combination of Zero Data Points and Assumed Heterosexuality
I knew that when I decided to medically, legally and socially transition, there would be a lot of changes. That was, in fact, the point.  Many of these changes were expected — deeper voice, greater muscle mass, disturbingly coarse arm hair and the like.  Other changes surprised me, none more than the way in which people began to read me and treat me like a straight identified man with a particularly rigid concept of masculinity.  Back slaps became harder, punches in the arm more routine, hugs less frequent, and handshakes more competitive.  Men – including trans men – began to say words like "cunt" in front of me in casual reference to female co-workers and strangers routinely shared homophobic jokes. Everyone it seemed had a strong idea of exactly what type of man I was in the process of becoming.

Perhaps one of the most unexpected places I experienced this dynamic was at the doctor’s office. I’m one of the very few, privileged trans identified individuals who has health insurance that is inclusive* of trans related care and access to a range of trans- affirming (if not particularly experienced) medical professionals.  As I have accessed care, I’ve been surprised to find that, more often than not, medical professionals have a range of assumptions about my sexuality. Here are a few I regularly encounter:

I exclusively have sex with cisgendered women
I do not have anal sex (with anyone)
I did not have receptive vaginal sex (with anyone) 
There is no chance that I was or could get pregnant
There is no chance I would be at risk for HIV
There is no reason to talk to me about birth control, PEP, PrEP, or being tested for HIV or any STI for that matter 

At first, I thought it was something I was doing. Is my desire to be accepted as male was giving off some sort of "intolerant, rigidly heterosexual" vibe?  So I began talking to other trans men about it and the vast majority of my friends had similar experiences — it seems there is at least some evidence to suggest that many health care providers treating trans men make similar assumptions.

The trouble with these assumptions of heterosexuality is that they are wrong. In fact, the few studies that are out there suggest that one quarter to half of trans men identify as gay or bisexual and even more identify as queer; that significant percentages of trans men do have receptive vaginal sex with partners who are not cisgender females; and significant percentages do have anal sex with partners who are not cisgender females.

But assumptions render us invisible, and as a consequence, trans men at an elevated risk for HIV are highly unlikely to receive access to information, testing, and care that could significantly decrease their risk of infection, increase their chance of knowing their sero status, and significantly increase their opportunity to be linked to care if they are HIV-positive.

This fact is all the more dire given that almost none of the existing campaigns around prevention, testing, or accessing care include or even acknowledge the existence of trans men and all the more problematic given that trans men already experience high levels of discrimination in healthcare, routinely avoid medical care for fear of discrimination, and routinely lack access to care in the first place. 

It’s crucial that we improve the cultural competence of health care providers in general and especially among those providing transition-related care.  

We also need greater medical competence and awareness of trans health issues, which will require organizations like the Centers for Disease Control and Prevention (CDC) and corporations like Gilead to begin acknowledging, including, and counting trans men in their studies.

There is simply is not enough information for trans men about how to minimize risk for HIV.  Currently, the entry criteria for most studies around the effectivelness of PREP exclude transgender and masculine of center people.  While drug companies today can tell you with relative confidence that PrEP is safe and effective for intravenous drug users, they can only report that there have been no "indications that PrEP is not effective for individuals using hormones." Virtually no one mentions that, for trans men that have receptive vaginal sex, PrEP may take significantly longer to fully protect them from HIV, and even that’s an educated guess that trans men are making based on reading the scientific literature on cisgender women.  And no one has anything to share about whether the way in which testosterone impacts trans men’s bodies may actually increase infection risk from receptive, penetrative vaginal sex, though many physicians believe this to be true.

Spectacle, Surveys, and Stages in Need of Storming
I often find myself in arguments over the strategic value of what others sometimes dub "the politics of spectacle." There is a not insignificant portion of our community who rolls their eyes at events like Bi Visibility Week or the takeover of the stage at the U.S. Conference on AIDS.  At the most simple level, I think it is very hard for folks around whom political discourse is centered to get their head around the idea of marginalization as an obstacle to progress and of visibility as a crucial and effective tactic of resistance. Like those proverbial fish who do not know they are wet, for folks of relative privilege, the idea of having to fight to simply be seen is almost unfathomable.  It is clear to me that visibility, in and of itself, is insufficient but also that it is a prerequisite for awareness and survival.  Further, there are many ways to fight for visibility, and I believe there are quite a few more stages that require storming and more, not fewer, events like Bi Visibility Week will create the opportunity to bring attention to crucial issues like HIV in queer communities. 

Some of What We Need
•  Count Us: We’ll never be able to adequately address HIV among trans men unless we begin counting them. Without data collection that captures health data for our community, we are invisible for purposes of funding, programmatic development, and training. We need every state to collect health data on trans men (as well as trans women, bisexual people, and other communities) through state and federal surveys, every medical provider to employ electronic health records that include our identities, and funded research by government agencies on our health disparities. 
•  Continue to Expand Coverage: Trans men, particularly those of color, face heightened rates of poverty and are less likely to have insurance coverage. While the Affordable Care Act is making great strides to improve healthcare coverage for low-income people across the country, there are still too many states that have failed to expand Medicaid — a step that would help ensure coverage for many low-income people, including trans men. Moreover, while HHS is proposing rules to clarify non-discrimination protections under the ACA that should cover trans men, most states still do not have laws or policies in place to prevent discrimination in healthcare or insurance.
•  Require Clinical and Cultural Competence: Most medical providers have little to no experience with serving transgender and genderqueer patients, and they may not fully understand medical issues faced by our communities. We need to follow this increase in coverage with increased cultural and clinical competency training in order to provide real access for our communities. A great example is a bill proposed in the District of Columbia, the LGBTQ Cultural Competency Continuing Education Amendment Act (B21-168), which would require all medical providers to receive training on LGBTQ clinical and cultural competency as part of their continuing education.
•  Integrate Culturally Competent Sexual Wellness Into Transition-Related Healthcare: Those medical professionals that do serve the trans community — specifically around transition needs — are some of the best positioned to educate their patients on sexual health and wellness, as they are frequently the only medical professional a trans person sees.  We need these healthcare providers to get educated on the reality of trans sexuality and to provide appropriate education, support, and, care.

Those are just a few ideas, but there are hundreds of things that we can do right now to stem the tide of this crisis.  While data is crucial, we don’t need to wait until we can trace an upwardly sloping trend line that shows us in black and white what we already know: we as a community are facing increasing infections and mortality rates. 

Volunteer or give to one of the countless organizations in communities that are getting it right like Casa Ruby here in D.C. or Forge in Tenn., give to one of national trans organizations, working to insist that the lives of trans and gender queer folks are not erased, groups like National Center for Transgender Equality, The Trans Latina Coalition, and the Transgender Law Center, which has a new program for poz trans people called Positively Trans (T+). Read and follow leaders on Twitter who push hard for inclusive narratives like @BambysSalcedo, @Cecilia Chung, @Teo Drake, @Brand @Noel Gordon and so many more. Find your own stage to storm. Any stage will do. Act Up, Fight Back. Refuse to be silent.

Hayden Mora works as strategy and organizational development consultant based in Washington, D.C. He most recently served as the Deputy Chief of Staff of the Human Rights Campaign where he was the first transgender member of HRC's senior executive team. At HRC, Hayden's portfolio included organizational development and strategy with a focus on racial justice, HIV/AIDS and transgender and gender queer communities.  Before HRC, Hayden spent ten years in the labor movement culminating in his role as the Deputy National Political Director at the Service Employees International Union. He worked with others to ensure the adoption of trans-inclusive healthcare and later directed a national campaign to move other unions to do so too. You can contact him at haydenjlmora@gmail.com.