I found out I was HIV positive when I was 18 years old, and now I am 24. When I first found out my diagnosis, it was a bit tough simply because of the stigma that comes with having HIV in my community. I was ashamed for many years until I found a mentor in my community who helped me find the confidence to get on medication and tell my story. When I turned 20 and started my medication, it was difficult to be consistent as I was struggling with housing and additional barriers at the time. My mentor always tried to keep me in good spirits and never judged or stigmatized any decision I made. He supported me in finding a job and home, which helped me take my medication consistently. Once I had all the tools and resources that I needed to be at peace, even found the courage to start using my story to help others like myself. When I turned 22, I started as a Peer Navigator/Mentor at Project Silk, a non-profit in Pittsburgh, Pennsylvania that provides STI/HIV testing and other services for people living with or impacted by HIV.
My role at Project Silk included providing HIV and STI testing and planning events for young people such as vogue, art, and storytelling workshops. These events were important because they offered an environment free of judgement, a safer space, and reflected all young people, especially those that were a part of the ballroom community. While working at Project Silk, I wanted to pour what my mentor had poured into me into others. At 23 years old, I applied for Advocates for Youth’s Engaging Communities around HIV Organizing (ECHO), the first-ever national council for youth activists living with HIV. We support young people living with HIV transition into adult care, host events to destigmatize HIV, and advocate for policies and programs that allow young people living with HIV to thrive.
Joining ECHO introduced me to a new world of support and love that I never knew I needed until I experienced it. My first year as a councilmember truly changed me and took this heavy burden of feeling as if I was one of the few people organizing around combating stigma off my heart. During the first few days of our organizing retreat, it meant so much to share space with other young people living with HIV and share stories about thriving and the mentors that support us. After the retreat, I took the organizing skills that I had learned throughout the weekend, and my mentoring skills had increased. I initiated town halls for World AIDS Day and created a support group for young people living with HIV.
As I have shared my story with newly diagnosed young people, I continue to recognize the power of mentorship. Mentors support young people living with HIV to build skills that may close gaps in care. This is important as young people living with HIV typically enter adult care by the age of 25. When entering adult care, young people are worried about confidentiality, privacy, and trust in an adult setting, are overwhelmed by change, and are sometimes afraid to ask for support. Through my mentor and the work that I have done through Project Silk and ECHO, I know that mentors have the ability to connect personally, provide guidance, and share experiences so that young people living with HIV gain the confidence and skills to manage their own healthcare. Looking back, if I did not have a mentor at such a crucial period in my life, I am not sure where I would be today. I transitioned to adult HIV care earlier this year and continue to think about ways that I can support and mentor others. Mentorship is recognized as an effective strategy to support young people living with HIV build the self-management skills needed to successfully transition from pediatric to adult care, a point at which they are most likely to fall out of care. As we think about ending the HIV epidemic and the Trump administration’s national HIV plan, young people must be a part of the process. In addition, the role of mentors, mentorship, and peer navigation must be prioritized. As I have mentioned, young people like me face unique barriers to care that must be addressed in the national HIV plan. In 2016, youth aged 13 to 24 made up 21%of all new HIV diagnoses in the United States, and only half know their status. In addition, young people have low rates of HIV testing and are least likely to be connected to HIV care after testing positive.
As we recognize World AIDS Day and goals around HIV prevention, treatment, and care, remember that mentors can be anybody — including a health provider, clinic staff, aunt, uncle, or teacher. ECHO councilmembers and I recently worked with Advocates for Youth to design Medical Mentorship for Young People Living with HIV: Toolkit and Guide. The resource will be launching in 2020, so stay tuned via social media. It’s everyone’s responsibility to ensure that young people living with HIV have the right to accessible and affordable treatment. We must ensure that young people have the support needed to build the skills to successfully engage in care.
Tyreese Taylor, 24, is an Engaging Communities around HIV Organizing (ECHO) activist with Advocates for Youth, an organization that works alongside thousands of young people in the U.S. and around the globe as they fight for sexual health, rights and justice. The Toolkit is made possible by a grant from ViiV Healthcare.