Q&A: Enhancing HIV Research with Trans Youth Involvement

Adolescent Health & Well-Being

Pride Month cannot be mentioned without discussing the Stonewall Uprising, a movement that was largely led by transgender women of color such as then 23-year-old Marsha P. Johnson and 17-year-old Sylvia Rivera. Transgender women may have spearheaded the LGBTQ+ rights movement, but to this day remain such a marginalized population. 

In fact, the Centers for Disease Control and Prevention (CDC) recently released a report indicating that transgender women commonly experience homelessness, poverty, and food insecurity, leading to a pervasive experience of stigma and discrimination ultimately reducing  access to education, employment and health care. The report also highlights that transgender women are disproportionately impacted by HIV, a health statistic that Children’s Hospital of Philadelphia (CHOP) research studies such as Get Connected are trying to combat. 

Get Connected is a quality improvement project that examines the characteristics of HIV test counseling and Pre-Exposure Prophylaxis (PrEP)-related referrals for young transgender women in Philadelphia through the use of mystery shoppers and a facility audit. Rylie Brown (she/her), one of PolicyLab’s Outstanding Youth Award 2022 winners, serves as a mystery shopper for the Get Connected study. In honor of Pride Month, I asked Rylie to discuss her involvement in HIV prevention research at CHOP as a young transgender woman.

What inspired you to get involved with CHOP’s research studies?

Well for starters, when I first got involved it actually was mainly a cash incentive, but overtime I just kept participating with different HIV-related studies and groups around CHOP because I thought it would give me a chance to involve myself in the LGBTQ+ community and especially the trans community.

You mentor other trans women involved in these research studies – what does that look like?

I don’t even know if I call it being a mentor. I just act and interact with others in a way that I try to make others comfortable in their own skin while also trying to be comfortable in my own skin. It’s subconscious.

From your perspective, why is it important for youth to be involved in HIV prevention research?

I feel it’s important because—especially during teen years—LGBTQ+ and really any teens are learning a lot about themselves and how things work out in the world, and I feel like HIV awareness and prevention is a critical part of that because of how much of their life it can impact. Having youth involved in HIV prevention research not only helps their own awareness and understanding, but it will help them spread awareness to other youth, not just in school environments with teachers droning on about it or glossing over it. It adds some peer dialogue.

What would you like to tell researchers about best practices for engaging LGBTQ+ communities in research?

I guess my best advice or things to say would be don’t approach it as something that sounds hard and nuanced. Keep it relaxed and don’t sound as if they are a test subject.

Thank you to Rylie for sharing her perspective. There are a myriad of ways to support the health and wellness of young transgender women this Pride Month and beyond from individual, institutional and policy perspectives. The National Center for Transgender Equality provides great tips for how to be a good ally to the transgender community. Proudly, CHOP has continued to earn a top score in the Human Rights Campaign Foundation’s (HRC) 2022 Healthcare Equality Index. HRC also provides resources for providers and hospital administrators related to transgender patient services and support. Lastly, review PolicyLab’s issue brief that highlights perspectives from youth and their caregivers on the lifesaving aspect of gender-affirming care and offers recommendations to policymakers, payers, and other stakeholders to ensure that gender-affirming care is accessible and affordable.

Anderson Schlupp, MS, is a clinical research coordinator with the Adolescent Initiative program at Children's Hospital of Philadelphia.