I do this work because I got tired of burying my friends.
I graduated from high school in 1983, just as AIDS was getting started. After college in the late ’80s and early ’90s, I was a music therapist working with patients with Alzheimer’s disease and their families. I maintained a semi-professional music career on the side, and there were many gay men involved in the arts scene. I lost a mentor to AIDS only six weeks after he told people he was infected.
A friend who was a case manager for AIDS patients asked me to consult on a case — a young man who had moved home to his parents’ home to die — who was exhibiting AIDS-related dementia. It seemed quite similar to Alzheimer’s, and I was able to provide them with some care-giving strategies.
Other friends were being diagnosed, and several more died. When I was ready to go back to graduate school, I started thinking, “I’ve got to do something proactive. I can’t just keep showing up to sing at funerals.”
I got a master’s degree in health science from Washington University [in St. Louis, Missouri] that would allow me to do something in HIV prevention. I served as a volunteer on a community advisory board at St. Louis University for a couple of years at a site that was doing trials with the HIV Vaccine Trials Network. Through that work I met Steve Wakefield, and I asked if there were any jobs at HVTN for someone with my background. He said, “How fast can you send me your resume?” I joined the HVTN about a year later, in 2003.
I’ve been here almost 15 years. I’m now the HVTN’s senior community engagement project manager. The principle around community engagement is to build relationships where there is trust. We don’t do research onpeople. We do research with people. And one day, when we find a safe and effective vaccine against HIV, we need communities to be prepared to accept it and to get vaccinated.
I work with volunteer community advisory boards, community educators and clinical trial recruiters. I get calls every day that say, “We planned an event and the turnout wasn’t what we hoped — what could we do differently?” Or, “Do you have a slide that explains this?” Or, “We could really use some training on how to read a protocol.” Or, “Could you help me create a tool to evaluate this program we’re developing?”
We go over what happened, find a slide, schedule a training or design an evaluation. My job is to help people succeed at their jobs. I get an immense satisfaction out of it.
I wear lots of different hats. I would be bored stiff if I had to do the same thing every day. I love to learn. The science keeps changing and evolving. There’s always something new for me to wrap my head around.
One of my strengths is finding ways to break down the science and explain it to laypeople using metaphors and simpler language. I love learning about new cultures and communities that are different from my own. I get to work with some of the most passionate people!
We have over 40 sites on four continents. Diversity is really important. With this disease, we don’t yet know if it matters what your gender or racial identity is or what part of the world you live in. If we find a vaccine, we want to be able to say it’s going to work in Zimbabwe and in South Africa, in Peru and in the U.S. and in Switzerland.
A vaccine is the best long-term hope to end HIV. Vaccines and fresh water are the two things that have done more than anything else to stop infectious diseases. When we find an HIV vaccine, I’ll be proud to say that I helped. Then I can sing a “Hallelujah!”
