When it comes to HIV, Black transgender women are the most heavily impacted population in the United States, with a prevalence rate of 62%—that means that almost two-thirds are living with HIV. Looking at those numbers made me wonder why. Why aren’t Black trans women being looked at and asked about their HIV testing experience? Why are Black trans women the last people to be paid attention to when it comes to access to health care and other social services?
As a Black trans femme nonbinary person, I had to take a look at what have been barriers and how much I have had to advocate for myself every step of the way when it comes to medical care, housing, social services, employment, and so many other concerns. In thinking about who decides who is worthy of care and attention, so much of that stems from systemic racism, racial inequities within the social services system, and the stigma within the Black community itself.
“Where Is the Effort When It Comes to Our Well-Being?”
As I was taking a walk to get my 10,000 steps, it hit me: There needs to be better involvement on both sides. Recently, I was reading a study published in PLOS One about Black transgender women’s perceptions of a possible cure for HIV, barriers to getting health care, and cure-related research. They did 19 interviews with 10 Black trans women living with HIV, asking their opinions on accessibility, research, and if they would be interested in participating in any HIV cure studies. What bothered me most about this study was the number of Black trans women they spoke to. Only 10 Black trans women were spoken to. Why such a small number?
At least 15 of my Facebook friends alone are Black trans women. If I looked deep enough, I know I could have gotten more than 100 Black trans women for this study. It made me wonder, where is the effort in getting this kind of data? It is not enough. Period.
Disappointed by the study’s lack of inclusion, I contacted the Black trans women in my network and asked if they would be willing to answer some questions about the study. Some were not interested in answering my questions at all, but luckily some were.
To get a better sense of the barriers that Black trans women encounter within medical research, facilities, and services, as well as with engagement in HIV prevention and care, I spoke with Nina Barkers, the manager of Transgender Equity at AMAAD Institute; Queen Shannon G., the office coordinator and a peer navigator at Unique Women’s Coalition; Chanel Lumiere, the board secretary at Unique Women’s Coalition and FLUX national secretary; and Mallery Jenna Robinson, a transgender advocate and health care specialist.
Sydney Rogers: Sixty-two percent of Black transgender women are living with HIV, and many face challenges with HIV care engagement, yet little HIV cure-related research has included them. Why do you think that is?
Nina Barkers: It is a well-known fact in the community about the lack of resource spaces available to the Black trans community and the prevention and attention to HIV/AIDS awareness.
Queen Shannon: Most Black trans women are very private when it comes to a positive status. They are not as open or accepting to their status. Most feel like they are always being used for data collection instead of treatment as a patient. Compassion from health providers is a great disconnect within Black trans health care. It’s disheartening to know that the largest community who suffers greatly from HIV/AIDS are the least chosen in cure-related research.
Chanel Lumiere: Transgender individuals have been in existence for a long time. HIV/AIDS has not. I believe science is still learning about trans people and there is not a lot of information on transgender individuals from a science perspective. Black trans women are still being misgendered and/or grouped in with Black gay men. Typically, when a person has a need (in this case, HIV/AIDS care), they might accept being misgendered or sticking to their assigned gender at birth.
Rogers: Do you think that the researchers of the study interviewed enough people?
Queen Shannon: [Ten] participants out of % is not enough, in my opinion. The studies should target communities that are greatly affected by HIV/AIDS first.
Rogers: Why do you think they had a hard time finding Black trans women to interview?
Barkers: Black trans women have a hard and justified mistrust of medical facilities and services. Other barriers are the individuals issuing the research making sure they are competent and empathetic to the trans community in their approach.
Mallery Jenna Robinson: I have spoken with clients who fit this demographic, and the reasoning behind little information gathered on Black transgender women consists of several factors:
One, Black trans women are the most marginalized communities within the transgender communities and often are involved in survival sex, which means they are busy surviving as opposed to being part of a study that only cares about the numbers and not them as people.
Two, Black trans women are often dismissed in multiple settings as not having a valid response and not being medically competent to navigate their own health care, and being often placed with the medical stigma of being the most likely to have HIV doesn’t make this community feel welcomed.
Many community members have felt that they prefer primary care physicians and [that] nonprofits should care about them having housing, transportation, food, clothing, and employment. Black trans women demand equity in health care accessibility and visibility in social services programs.
I know from my own experience that, when I go on a medical visit, they asked me about hormones, my gender dysphoria, and perhaps even PrEP, but rarely did the doctor ask me if I practiced safe sex, let alone prescribe an STD test, not just for HIV, but for other STDs as well.
Queen Shannon: Black trans women data barely exists. Perhaps no incentives were being offered for their time. Most trans women prefer living under the radar.
If data is what is needed to get funding from the government to get funding for services, the three types of studies cannot include only 10 Black trans women. There has to be an effort to find more and a collaborative effort with other agencies. The urgency of this needs to be communicated so that the understanding is: more data = more funding = change in Black trans health care.
Rogers: Have you experienced any mistreatment when in your medical visits?
Barkers: Yes, I had to ask the doctor multiple times to check up on something. It was only when I got completely vocal that they slowed down and took the time to understand my ask.
Robinson: I personally have experienced medical mistreatment within medical visits specifically in the emergency room, where I would encounter the most medical apathy, and often feeling as if I have to re-out myself, meaning when a medical doctor asks me questions regarding my medical care as if I am a cisgender woman, and then I have to tell them I am a post-operative transgender woman with HIV, the attitude shifts completely, where the temperament of the medical staff changes and becomes hostile and apathetic and definitely less subjective (where the lack of human emotion is apparent). But also, the medical provider becomes more objective and clinical and detaches completely from the medical care—all because of my gender identity. I have been in medical situations where doctors wouldn’t even return, and I only have nurses or the PA communicate with me going forward. This type of medical mistreatment is quite common for transgender individuals, and especially Black transgender women.
Queen Shannon: As a peer navigator, I do wellness check-ins with my clients to assure they are receiving the best care. I heard complaints about short doctor visits and no resources that focus on Black trans issues. Black trans women are feeling overlooked and like they are not a priority.
It never dawned on me that that is a problem until I saw this study. It made me wonder, why is that so? It can’t be just about money, but there has to be a deeper issue going on here.
I know that getting tested takes money, medical visits take money, but we’re talking the highest rates of HIV infections in Black trans women. Why aren’t people up in arms about it? Calling it a pandemic or epidemic?
Rogers: What other barriers have you encountered?
Queen Shannon: Barriers of racism, lack of compassion, and the struggle to connect with people who don’t identify within the trans community. Barriers of not enough local resources for Black trans. Clients always express the discomfort of having to go into suburban areas for better resources.
Is it the color of our skin? The lack of funds that come with treating a client on state Medi-Cal [California’s Medicaid program]? Where is the effort when it comes to our well-being?
And I am not going to just put all the blame on the institutions. We have learned as a Black community, a TGI (trans gender variant intersex) community, a Black TGI community, that government institutions and their concern for our welfare stems from mistrust covering decades of abuse, withholding of true medical care, and ignoring of our pain.
But I must ask my Black trans sisters, if you are so gung-ho about HRT [hormone replacement therapy], getting top and bottom surgeries, FFS [facial feminization surgery], and such, why is something like basic health STD screenings not on the list? I understand that most of society assumes we do sex work, so even if that is the case, why aren’t we being tested? Is it because we are afraid of knowing the truth? Adding in the fact that most medical offices misgender us, treat us poorly, and outright dismiss our medical problems as complications from hormones, etc. And in the long run, who suffers? The one who is diagnosed, or in this case, undiagnosed until it is too late.
HIV is preventable. There are more tools than ever available to prevent HIV. You can use strategies such as abstinence (not having sex), never sharing needles, and using condoms the right way every time you have sex. You may also be able to take advantage of HIV prevention medicines such as pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP). If you have HIV, there are many actions you can take to prevent transmitting HIV to others.
There is so much stigma with being Black, being trans, talking about sex, and being openly sex positive. Each individually has its own issues to deal with. I know that, from personal experience, discussions about sex weren’t spoken of at home when I was a kid. I remember taking sex education in school, and never did they mention any other kind of sex beyond heterosexual sex. Making me feel nonexistent when it comes to what I want and what I am able to ask for [with] my sexual needs—and for that, I felt lost.
For the record, I am HIV negative and fought really hard to stay that way. I have suffered two failed sexual assaults, with the scars to prove it. Getting guys so upset that I asked about their sexual history, they blocked me. I had so many people tell me that I should not ask such questions when trying to hook up, and I tell each and every one of them, if we are doing the most intimate thing two adults can do, talking about STDs, condoms, and if they have been tested is what it means to be an adult. I am willing to take the blocking, the agitation, and even being alone if that means that will keep my health safe. It does get lonely. Perhaps that is another reason why so many Black trans women are getting diagnosed. To be close to someone.
I wonder if the research is enough to change that. It does come down to self-esteem. Do we love ourselves enough to protect ourselves? Do we love ourselves enough to give advice for ourselves in the medical office? Do we love ourselves enough to get tested—and get treatment if the results show we are HIV positive?
The trans journey is not for the weak of heart. There are so many things we have given up to live freely. Family. Friends. Livelihood. We go against the grain of what we as a society have been conditioned to think is correct. The more exposure we have gotten, the more backlash it seems we have received. But the love and the need to live freely is one of the fiercest motivators ever known.
I have not felt more free to speak my truth, take up space, and educate myself than I ever have in my entire life. So I ask, of both the ones who did this study and of my Black trans sisters: We need to do more. Find more of us to interview. Find more of us to ask these questions.
To my sisters, heal from some of the stigma we have faced. Understand that the more data there is, the more funding and spotlight to us, and the more help comes our way.