HIV Care, Youth, & Gender: Breaking The Binary

NC ATEC National Youth HIV/AIDS Awareness Blog Post by Andrew McGee, Joaquín Carcaño, & Helene Kirschke-Schwartz

 It's 8:45am, you're sitting in the waiting room of your provider. A familiar name is called, one you've long since distanced yourself from. It’s a name you no longer embody or use, but it remains on your legal documents and health insurance card. No one gets up. You quickly stand up among the people sitting around you, some of them looking up as you follow the nurse beyond the doors. The embarrassment and potential danger of being publicly outed as transgender in the waiting room is usually enough to keep you from doctor visits, but you couldn’t ignore your worsening health anymore. You find yourself in your doctor's exam room, head bowed, eyes staring at the floor and trying to shake what just happened. You hope that is the only issue you run into today, but you also know that’s unlikely.

 

But it’s just a name, right? Wrong. A name may seem like a small part of an office visit, but it can often be the first step in creating either a barrier to care in a safe environment. These barriers only multiply when patients move into more intimate settings, such as providing a sexual history. For National Youth HIV/AIDS Awareness day, I want you to put yourself in the shoes of a transgender and gender nonconforming youth trying to access HIV or prevention care. What would it be like to be called the wrong name? To be misgendered? To feel anxious every time you step into a doctor’s office? Would you go back? How are these issues affected by trying to access HIV or prevention services, something that already is tough to seek out?

 

Transgender and gender nonconforming (TGNC) youth are one of the groups at highest risk for HIV infection. TGNC youth are more likely to be homeless, out of school, and out of care. The doctor's office can be an essential resource and tool to connect TGNC with HIV prevention information and services, as well as getting them into HIV care and connecting them with other supportive services. However, there is often an information gap and cultural barrier between TGNC youth and health care providers. Most providers are not familiar or comfortable with the concept of gender transition and the language that youth are using to describe themselves. The many parts that make up health care, from sexual histories to Electronic Medical Records, have a binary gender structure and were not created to include TGNC patients. Additionally, TGNC youth are often mistrustful of health care institutions and struggle to get the preventative services and treatment they need.

 

Transgender and gender nonconforming youth in the South at high risk for HIV

 

Respondents to the National Transgender Discrimination Survey (2011) reported over four times the national average of HIV infection, 2.64% in their sample compared to 0.6% in the general population. Rates for transgender women were reported at 4.28%, and with those who are unemployed (4.67%) or who have done sex work (15.32%) even higher.

 

The U.S. Department of Health & Human Services' Healthy People 2020 reports that TGNC people are more likely to face "a high prevalence of HIV/STDs, victimization, mental health issues, and suicide and are less likely to have health insurance than heterosexual or LGB individuals." Transgender people are also at higher risk of substance use, while TGNC youth experience homelessness and self-harm at higher rates than non-trans youth. Rates of all of these conditions are even higher for TGNC people of color.

 

With established high HIV rates in the South, TGNC youth who live in the South can be easily inferred to be one of the groups at highest risk for HIV infection.

 

The gendered nature of HIV health care and research

 

The gender binary, or the social construction of gender as only male or female (and traditionally static), is a common thread throughout HIV health care and research. We must break down down the gender binary in our minds before we can do it anywhere else.

 

Have you ever had a patient who identifies as a straight man, and also has sex with men? Have you met doctors who aren’t able to provide sexual health guidance for women who have sex with other women? Why does “women's health” curriculum mostly consist of reproductive health information? And have you ever had a scared young patient who says they are genderqueer, and did you know what to do?

 

The truth is, people are a lot more complex than male/female, and HIV prevention and treatment is necessary for many more people than those that can be fit into the category “MSM”. As HIV rates continue to rise for many groups in the South, it is essential that HIV care adapts to our changing youth population and meets them where they are.

 

We have to change how we think about risk, behavior, and gender when thinking about HIV risk because the gender binary is not an effective way to categorize risk, especially for youth. Obviously categorization of people is useful in health care and in research, but binary categorization (male/female, straight/gay) erases the hundreds of thousands of youth that exist outside of the binary, often increasing isolation, erasing us from research, and blocking us from services.

 

Gender, genitals, & HIV: Sexual histories and transition histories

 

The good news is, health care providers can be a great resource for youth!

 

So what questions should HIV care providers be asking trans youth, and how can providers effectively

provide care and link patients to appropriate services?

 

Anyone who works in HIV care knows that talking about sex is hard and awkward for many people because it’s personal and stigmatized. This is also true for gender & genitals! Providing context is essential for taking a sexual history, and for taking a transition history (a history of a person’s gender transition). For both, providing context is essential. These are hard and awkward things to talk about, but it’s important to have an honest patient/provider relationship in which the patient feels safe enough to be honest and seek services they need so that the provider can make sure to be providing useful and appropriate care to the patient.

 

Here are some resources on creating a safer and more welcoming environment for TGNC youth, information on different concepts of gender and sex relevant to providing health care, and how to ask TGNC youth questions about sex and gender:

 

Taking a sexual history with TGNC youth

TGNC Affirming Care, Questions to Ask

Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People

 

 

Looking forward

 

As with any population affected by HIV, focusing solely on HIV will not get us to zero new infections. We must see HIV prevention and treatment with the context of a person’s personal experiences and the barriers to care that they face. Transgender and gender nonconforming youth are a significant portion of populations that are at high risk for HIV, and it is essential for HIV health care providers to have a level of understanding, comfort, and compassion with TGNC youth issues.

 

For a diverse and unique population facing many barriers in health care and beyond, the doctor’s office can and should be a place where at-risk and HIV-positive trans youth can come to ask questions, receive comprehensive preventative education and care, receive and participate in treatment, and get connected with other supportive services. This will only happen if trans and gender nonconforming youth are respected for who we are.

 

Other great resources:

Trans Bodies, Trans Selves: A collection of contemporary TGNC experiences written by TGNC people

Understanding Gender by Gender Spectrum

Training Materials from the National LGBT Health Education Center

WPATH (World Professional Association for Transgender Health) Standards of Care Version 7