A Transgender Woman's Perspective on HIV Research, Prevention, and Care
Brooke Sullivan (left) will be helping Sheldon Morris, MD, (right) in recruiting participants for the PrEP clinical trial underway in Southern California.
In the second of this 2-part series, Dr Gianella talks with Brooke Sullivan, a California-based transgender woman and HIV activist, about her transition, living with HIV, her experiences with activism, barriers to HIV prevention and care for transgender people, and taking part in clinical trials to enhance understanding of HIV research within this group.
Infectious Disease Advisor: Ms Sullivan, can you tell us about your story?
Brooke Sullivan: Sure. I am a transsexual female, 31 years of age. I transitioned about 7 years ago when I moved to San Diego. At the same time, I also started my HIV therapy when one-a-day pills had just come out. I contracted HIV when I was about 21.
Over the years, I have been focusing on my activism in the community to help our transgender, gender nonconforming (GNC), and intersex communities get connected with relevant resources and get educated about HIV research opportunities. I am also a businesswoman at a local tech startup where I do marketing and business development. For the most part, I am just trying to make a change.
Infectious Disease Advisor: What are some of your experiences with activism, and how did you start getting involved with the HIV community on an activist level?
Ms Sullivan: I started doing activism work when I was very young, around 8 years old or so. My parents had me working with the Poverello House during the holidays and my Grandma would take me around to drop off food for Meals on Wheels. As I got older, I realized that helping other people was a very important part of my life. There is something that calls me to give back and help others in need. Thus, I joined the San Diego Pride Community Advisory Council and later the entertainment team. This led me to eventually running The T-Spot, Inc., after working with them for one year. Since then we have become a 501c3 non-profit, expanded our Trans/GNC resource guide, grown the Trans/GNC areas at San Diego Pride, and increased our sensitivity training services for local organizations and businesses. It has been very exciting to be a part of that growth and seeing our hard work pay off as we help people.
Once I heard about this new and exciting prevention project starting at the University of California San Diego (UCSD), I realized that I wanted to take my activism to another level. Being part of this clinical trial with Sheldon (Sheldon Morris, MD) and the team at the AntiViral Research Center (AVRC) was really the next step that I wanted to take toward making a positive impact in my community. It hits close to home, as a person affected by HIV. When I first went to find groups, services, and doctors, they were all for gay men, and it just didn't feel like there was anything out there for me. That hurt, and it took me a long time to manage going through that on my own.
Infectious Disease Advisor: What are the main barriers to HIV prevention and care for transgender people?
Ms Sullivan: That is a loaded question. Many women get HIV because they do sex work, experience sexual assault, lack education/outreach, or use drugs. Over the past years, at least in California, we have an increased acceptance of transgender individuals socially, and this has increased the opportunity for jobs. In turn, I think that HIV prevention will be much higher on the radar for our community due to greater acceptance by our society. Of course, there is still a long way to go, but we are making strides forward.
For barriers, we are looking at, “Do I feel comfortable going to a clinic?” Everyone knows about condoms, but there is so much more to learn about HIV and what behaviors are associated with transmission. If you don't feel comfortable getting to places that educate you, test you, and monitor you, how are you going to continue to stay safe?
Infectious Disease Advisor: How might the recent political and legal issues affect attitudes of transgender people toward clinical research?
Ms Sullivan: Hopefully, clinical research can achieve acceptance and validation in the trans/GNC community independently from politics. It is important for trans/GNC individuals to feel embraced and recognized, and the biomedical research community could become a safe space for many of us. We are fighting politically to get our rights and we don't agree with a lot of things going on. Biomedical research should remain an individual experience, which can be validated and verified by people in the community. As soon as one trans/GNC person has a bad experience at a specific clinic, that will reverberate within the community and people will hear about it. When people have good experiences, it will be the same. But when people advocate for us (such as UCSD is doing, as well as other organizations), political issues should not affect our feelings toward clinical research.