National Transgender HIV Testing Day – Guest Blog
Guest blog by Joaquín Carcaño, Project Coordinator, Enlaces por la salud, Behavior and Technology Lab (BATLab), Institute for Global Health & Infectious Diseases, UNC Chapel Hill
I want to pose a few questions to you – what is the difference between surviving and thriving? Have you encountered this struggle for yourself? How do we, as individuals working in HIV in our many different capacities, both contribute to and restrict our clients and/or patient’s ability to survive and thrive?
The opportunity and privilege to not settle for survival but to thrive is a discussion frequently had within the transgender community, inclusive of those who don’t identify with their sex assigned at birth. The threat to survival sparked the ACT UP advocacy in the first years of the HIV epidemic and it was because of these efforts that we saw success in drug treatment access and affordability, healthcare legislation and coverage, federal recognition, and broader discrimination protections for the HIV positive community in public and private spaces.
Many parallels can be drawn between this activism and the trans liberation movement continuing to gain momentum and strength today. Both were born of and are fueled by grassroots mobilization and the threat to survival, opposition has tried to shame activists into silence often using fear mongering tactics, those who are most directly affected (and thus most vulnerable) are leading the charges, literally putting their lives on the line, and risking personal safety for the needs and benefit of the larger community. Medical providers were advocates and allies then and the same holds true now, but the work is just getting started – there is a lot of damage to undo and gaps to fill. Today is National Transgender HIV Testing Day and I want to use this space to explore why we need to reclaim HIV as a social justice issue and ask what we, as potential gatekeepers to HIV and gender affirming care, are doing to open those doors of accessibility and actively contribute to the ability of the trans community to thrive.
HIV and Social Inequality
It is no coincidence that HIV continues to be further concentrated in the southeastern US, overlapping areas of historically oppressed communities of color with low financial resources and limited access to healthcare. From the onset, HIV has always affected the most vulnerable and marginalized and that cycle continues. Globally, transgender women are 50 times more likely to have HIV than their cisgender counterparts. It is trans women of color who carry the highest burden of HIV across all demographics precisely due to the compounded inequalities they face – transphobia and violence, high levels of criminalization, poverty, homelessness, racial and ethnic discrimination, potential loss of social support systems, restricted healthcare access, and low levels of employment due to discrimination in hiring practices. The average life expectancy for a transgender woman of color is 35, primarily as a result of violence. Let that sink in. We cannot disentangle the high rates of HIV for trans women of color from these multiple forms of oppression and systematic violence. Ana Oliveira, former director of New York’s Gay Men’s Health Crisis framed it correctly when she said, “If you fight racism, you fight HIV. If you fight homophobia, you fight HIV. If you fight sexism, you fight HIV. And if you fight poverty, you fight HIV.” The fight continues on all fronts, but confronting transphobia is lacking and has never been more pressing. If we have any investment in reducing HIV rates, in combating violent anti-trans rhetoric, in contributing to the ability of the trans community to have fulfilling lives, we must be intentional about our approach to HIV from a social justice framework.
Part of that work involves shifting the narrative of HIV in the media and community at large. Research compiled by Diego Mora, Next Generation Leader of the McCain Institute, found that 42% of media coverage regarding HIV focused on research for a cure while prevention and treatment covered 27% of media space. Tellingly, stigma and discrimination was discussed in only 8% of HIV related media reports. The domination of HIV conversation by cure research and the promotion of HIV as a chronic condition can be dangerous because it fails to take into account the many societal injustices that contribute to HIV and which will continue to impede access to healthcare after diagnosis. It neglects those in our community who will never see the inside of a clinic room, who may not make it to the day a cure is announced precisely because their lives are oppressed in a myriad of other ways. Particularly for the trans community, these narratives disregard those who have internalized the violent language of HIV stigma and transphobia and are currently grappling with their diagnosis amidst the damaging transphobic rhetoric playing out in state legislatures, in the media, and the larger community. With a suicide attempt rate of 41% for the trans community, we cannot contribute to conversations and media reports that actively exclude the HIV positive trans community and serve to further restrict healthcare access. Doing so only reframes HIV as a death sentence for many.
The Role of Healthcare Workers
As HIV care providers, support and research staff, where does that leave us? The burden of dismantling healthcare barriers is our responsibility and this includes undoing the damage the trans community has faced directly from the medical system. These barriers exist in many forms unique to our community – where having outdated names and/or gender markers on identification and health insurance cards could mean encountering transphobia and potential public outings, where not having access to the right restroom means not attending your medical visit, for trans people of color it means compounded discrimination based on race/ethnicity and gender, and for the undocumented trans community, fear of immigration officials means not leaving your home altogether. There have been multiple reports of trans women foregoing their antiretrovirals in favor of hormone therapy due to misinformation communicated by their providers and/or outright discrimination. Many later succumbed to HIV related complications. In these instances, the lack of gender affirming care stripped these individuals of their right to HIV treatment and ultimately cost them their life. You must remember that survival for us means living out our true, authentic selves and anything that threatens that is already a certain death for us. HIV care is in the unique position to address survival and further enable the trans community to lead fulfilling lives if approached with intention and the recognition of the complexity of lives outside of HIV status.
So what can reclaiming HIV as a social justice issue on behalf of the trans community look like? This is in no way an exhaustive list but to start it means having the difficult conversations with colleagues, family, and friends about our rights to safety, protection, and validation. It means creating gender affirming spaces within clinics from the moment an individual walks through the door. It means hiring trans women of color in healthcare environments to not only improve the quality of these spaces for the community but to increase employment access for folks who face an unemployment rate four times higher than the general population and a yearly household income of $10,000. It means using your influence as medical providers to advocate professionally and personally on issues outside of HIV – the very issues that contribute to its presence in the community in the first place – anti-trans legislation, racism and discrimination, poverty, homelessness, and healthcare access. It means coupling hormone therapy and HIV care, as is being done at UNC, Duke, and the Durham and Wake Health Departments, in order to combat economic and clinic accessibility barriers. It means investing in the care of the transgender community outside of HIV status, outside of the designation as a “special population.” It means treating us as whole beings with diverse lived experiences, backgrounds and narratives, knowing our medical transition if and how and what we pursue, is ours to own and should not be a blanket expectation or assumption for every trans individual you interact with. Ultimately it means listening to us and seeking out and supporting resources developed by the trans community such as Positively Trans (T+), an initiative of the Transgender Law Center. It calls for people to sit and own how much they do not know and to take our lead, especially the voices of trans women of color, and to supplement the work of the trans liberation movement. Providers may know the clinical aspects of HIV and certain gender affirming care the best, but we know our community and our robust lives outside those clinic walls. For HIV positive trans folks, survival is diagnosis and care coupled with gender affirming medical spaces. To thrive? That requires an active contribution to the fight against the many oppressive forces facing the trans community. Dr. Michelle Cordoba-Kissee, an endocrinologist at The Gender Care Clinic of Doctor’s Hospital at Renaissance, a newly opened medical space in the Texas-Mexico borderland of my home put out a call to action saying, “We’ve taken an oath, and we will cause no harm, and (in) doing that, we will not perpetuate harm cause by society. I’m ethically obliged to use my privilege to advocate on my patient’s behalf.” Let’s embody that. We cannot settle for survival.
HIV prevention and care for the diverse trans community
As a queer Latinx trans man, it would be a disservice to not speak to the needs of my community whose gender also does not match their female sex assignment at birth and who have sex with men as to where we fit within HIV education and care.
As a (transgender) man with a cisgender boyfriend, both of us people of color, my non-monogamous relationship would fit nicely within “high-risk categories” yet because I am transgender my sexual relationships are often assumed or simply not discussed altogether. As trans individuals who have sex with men, we are navigating sometimes new sexual and social networks without for the most part ever receiving adequate and applicable sex education. We too are learning bodily autonomy within intimate sexual spaces. Assumptions as to our sexual relationships and exclusion of us from essential HIV related healthcare conversation has consequences and must be remedied. Simply put, we too are vulnerable.
While my partner and I are both on PrEP and though I work in HIV, navigating the system to obtain my initial prescription was daunting and at times disheartening because myself and my community were not reflected in research, literature, or general conversation regarding HIV prevention and treatment. And to be honest, I chose to obtain my PrEP prescription outside of UNC, my employer, because I wanted the comfort of anonymity.
Still, I found myself again carrying anxiety and shame and apprehension into that doctor visit, preparing myself for invasive questions and misunderstanding, rehearsing responses in my head, wondering if PrEP was right for me and whether I had agency to even ask for it. The answer was, of course I did. But that was something I had to reinforce for myself. Even then, I feel well versed in navigating the HIV prevention and care medical system because of my work, but for the many who don’t, what fear do they carry? Can they make it through those clinic doors and self-advocate? That burden should not fall on them. We must do better to bridge the community and our resources and that requires being conscious of the diverse sexuality of the trans community and finding ways to be inclusive in access to healthcare and research.
We cannot shy away from the reality that HIV will continue to compromise the lives of the trans community if we do not simultaneously confront the social inequities plaguing communities of color while providing HIV care. Combating HIV from a social justice standpoint not only enables survival, but liberates communities so they can thrive. A fulfilling life for the trans community can and should be accessible. It should not be a pipe dream. Trans women of color should not have to fear celebrating their 35th birthday. Now my questions to you are: Will you stand with us? Will you use your privilege to advocate for HIV positive trans folks in ways that go beyond their diagnosis and care? Will you center and amplify the voices of trans women of color and follow their lead? The work is waiting for you and I hope you join us.
“No pride for some of us without liberation for all of us.” – Marsha “Pay It No Mind” Johnson, a black trans women, sex worker, member of ACT UP, and mother of the trans and queer liberation movement. She dedicated her life to helping homeless trans youth, sex workers, HIV positive folks, and poor and incarcerated queers. She is responsible for sparking the Stonewall Riots at 25 alongside Sylvia Rivera, a trans Latina activist and co-founder of STAR, an organization for homeless young drag queens and trans women of color.
Trans Empowered: Trans Women Share HIV Experiences in Video Series: http://www.thebody.com/content/78493/trans-empowered-trans-women-share-hiv-experiences-.html?ic=sanext
To Stop HIV: End Economic Injustice and Criminalization of Trans People, Advocates Say: http://www.glaad.org/blog/guest-post-need-hiv-aids-advocacy-within-larger-social-justice-movements
This Isn’t Just Research, It’s Our Lives: Centering Trans Stories in HIV Treatment and Prevention: http://www.thebody.com/content/78591/this-isnt-just-research-its-our-lives-centering-tr.html
Positively Trans (T+): https://transgenderlawcenter.org/programs/positively-trans
Guest Post: The need for HIV & AIDS advocacy within larger social justice movements: http://www.thebody.com/content/78556/to-stop-hiv-end-economic-injustice-and-criminaliza.html?ic=sanext
DHR, UTRGV create Gender Care Clinic: http://www.themonitor.com/news/local/article_e8ee6664-09f7-11e7-8795-b3a8d948fc30.html
Trans Men and the Invisible Battle with HIV: http://www.hivequal.org/homepage/trans-men-the-invisible-battle-with-hiv
Four Years to Live: On Violence Against Trans Women of Color: http://www.huffingtonpost.com/trav-pittman/trans-woman-of-color-4-years-to-live_b_8637038.html
Op-ed: It’s Time for Trans Lives to Truly Matter to Us All: http://www.advocate.com/commentary/2015/02/18/op-ed-its-time-trans-lives-truly-matter-us-all
Look beyond Caitlyn Jenner: Transgender women of color are fighting for their lives: http://www.salon.com/2017/04/07/look-beyond-caitlyn-jenner-transgender-women-of-color-are-fighting-for-their-lives_partner/