Sean P. Sylve, a member of the HPTN 083 Community Working Group, is a clinical research and community engagement specialist in the Section of Adolescent Medicine in the Department of Pediatrics at Tulane University School of Medicine in New Orleans. He has been at the forefront of community organization, mobilization, HIV prevention and research in New Orleans for more than a decade. It is his goal to affect change in New Orleans by using community engagement and culture, specifically the house ball community*, to mediate biomedical prevention efforts and reduce the disproportionate burden of HIV on Black and Hispanic/Latino LGBTQI+ people.

What attracted you to a career in HIV prevention research?

I was studying piano performance at the time when a trusted voice within my community recruited me for two studies: ATN 110 and ATN 113. My experience in the studies sparked my interest in public and sexual health. By the end of the studies, I had changed my college major to public health and was working as a peer educator, community STI/HIV counselor and tester. After a few years, I was offered a position for a University of Kentucky-run pilot study in New Orleans and fell in love with research. I have been working with the New Orleans Adolescent Trials Unit [NOATU] since 2016 on studies for three different networks: HPTN 083, ATN: CARES and HPX3002/HVTN 706.

What aspect of your role do you enjoy the most?

I most enjoy advocating for our study populations and I take that role very seriously. Participants seem to appreciate the fact that I walk them through the study – meaning I don’t just hand people off to a clinician or nurse once they decide to come in. The person who first recruits or engages a prospective participant may be the best person to obtain informed consent, perform phlebotomy, perform HIV/STI testing and counseling, or even accompany participants to treatment appointments. All serve as ways to maintain relationships and trust.

What would you say most motivates you to do what you do?

One day a close friend told me he was surprised I had not moved from the New Orleans area and asked why that was. Ironically, it was only during my reply I realized how tethered I am to the research and our participants. As a former research participant, I saw tremendous value in my study team and felt personally invested in not only my health, but also for those around me. Nothing motivates me more than being that trusted voice to other people within my community and providing that same support network I had.

What has been the biggest challenge working in HIV prevention research?

Advocating for sustained community engagement and educational resources has been my biggest challenge working within HIV prevention research. I am fortunate to have budget transparency at my site, but I feel sponsors must be made aware of the importance of investing in the communities they seek to include in their research. Communities notice when we show up to a local bar with giveaways when recruiting for a new study, but they also see when we are absent.

What volunteering or passion projects do you do outside of work?

I advocate for legislative changes that would allow Louisiana youth to participate in the National Youth Risk Behavior Survey and for a comprehensive, age-appropriate, all-inclusive sexual education mandate. Overall, health literacy among youth is low, and I often feel as if I am starting from scratch when trying to recruit for studies.

What is your guilty pleasure?

My guilty pleasure is playing tennis. While it doesn’t seem like one should feel guilty about playing a sport, I started playing in high school after a guidance counselor recommended it to manage stress. I imagine compressing all the things that stress me out (including people) into the ball before smacking it around a bit.

*The House Ball Community (HBC) is characterized by mostly Black and Latinx LGBTQ+ people walking or competing, in categories for trophies, cash prizes, affirmation, and celebration. These categories vary and are centered around fashion, voguing and runway, beauty, and physique. However, ballroom culture is rooted in defiance of oppression and accompanied by a rich history spanning back to the late 19th century.

Groups of Black and Latinx LGBTQ+ people first started holding underground drag balls in resistance to homophobia and transphobia from the black church. In the late 1960s, racism, colorism, and several other factors, lead the community to create an evolution of the drag balls to house balls. With fresh enthusiasm, these events grew to unforeseen heights. Balls began to garner spectators as people heard of attendees’ extravagant attire, dynamic performances, and unshakable nerve. While houses (or families) as kinship structures are not exclusive to HBC, they are and have been essential in providing affirmation, security, and healthy competition.

The birth of house culture within the ballroom scene is often credited to Crystal LaBeija, a well-known New York transwoman and founder of the House of LaBeija. In the early 1970s, she stated that an upcoming ball she was planning was being thrown by “The House of LaBeija.” Some people believe this was just a tactic to gain more attendees. If it was, it worked. Soon after, this trend had set in, and houses gave balls. Ball participants now declared themselves members of these houses and competed for the glory and respect of the entire scene. Like Crystal, house parents have often been community influencers and relatively charismatic people who don’t just help their children snag trophies. Parents have also provided structure, advice, and even shelter for many of their house members for decades. This support is not only crucial for many marginalized young people but also mostly inaccessible outside of these groups. HBC helps to assuage the ill effects of misconception and stigma, the burden of HIV and sexually transmitted infections prevalence within these communities, and lack of affirmation from the general population.

Courtesy: Sean P. Sylve and Twiggy Pucci Garçon, Overall Overseer of the Legendary International House of Comme des Garçons