How has HIV Affected your life and what motivated you to become an advocate?
I was 19 years old, and on my second date with my first boyfriend when he told me he was HIV-positive. He was 23 years old. It was 1989 and it seemed all but certain he would be dead in just a few years. It was a sucker punch to have the prospect of death mark my entry into an adult life as a gay man. My fear and anger led me to take action rather than run away and this started my path as an HIV advocate and educator. Though I ended up losing many friends, some of them, including my first boyfriend, remained alive and healthy long enough to benefit from triple-drug antiretroviral therapy (ART). We’ve been able to parlay ART into massive decreases in illness and death, and possibly even new infections, but it is not enough and I am dedicated to helping shape a new generation of tools to ensure a long and healthy life for every person living with HIV around the globe.
What would an HIV cure meant to you and to your community?
To echo what so many people with HIV have told me, it would be freedom: freedom from fear, anxiety and stigma. It would mean one less devastating factor that keeps people oppressed and discriminated against in communities where people are most vulnerable to a disease like HIV, whether through poverty, racism, sexuality, gender and gender identity or substance use and mental health problems.
What scientific and community engagement work excites you most about the DARE collaborators?
First, it’s so exciting to be in partnership with researchers who are so brilliant, dedicated and so open to and generous to the community. The principle investigators and the other scientists engaged in the collaboratory are pushing our understanding of HIV and the ways we might detect and be rid of it in unique and hopeful ways. Our community advisory board (CAB) is dedicating to ensuring that people with HIV and other advocates know about that work and have the tools and skills to engage with cure research in their communities no matter who they are.
My efforts beyond the DARE CAB include projects looking at the ethics of HIV cure research and ways to understand people’s willingness to take part in that research and how we may best ensure that they are fully informed about risks and benefits of their participation. I also work on science advocacy around biomedical HIV treatment and prevention through advisory bodies, such as the U.S. Department of Health and Human Services (DHHS) adult and adolescent antiretroviral guidelines committee, and on issues related to health care access and drug pricing.