What is your name and where are you from?
Janice Adams-Jarrells, from Rutgers/Newark, New Jersey
When did you join the ACTG?
I joined the research CAB sometime in 2006. After attending many meetings, I was appointed to be the GCAB representative.
Why did you get involved with the ACTG, and what are some of the things you’ve done as a member?
When I was diagnosed, there were people dying everywhere from the virus. After being prescribed AZT, I started questioning why men and women were taking the same dose when our bodies are so different. The answer I received was, “You need to get involved in research!” So, here I am.
I have been a trial participant and a member of protocol teams. I’ve been on several committees, including the CSS. I received the Bridget Murtagh Award three times, and the Sharon Maxwell Award. But really, just doing the work is enough of a reward.
Describe your community.
My community is an urban setting (the largest in New Jersey!) with many diverse people. My community is underserved and underrepresented. It includes LGBTQ people, women of color, older people, long term survivors, and transgender folks.
What are the most important treatment issues to your community?
Housing. In order to stay adherent, you need to have stable housing. It’s so important to have a place to live that is safe and comfortable, and that is free of stigma, shame, and judgment.
HIV criminalization is also a huge issue in my community – we need to change outdated and harmful laws. I’m in a discordant marriage, which is actually the main reason for the caption on my portrait (“Decriminalize us”).
How do you want your work in the ACTG to be remembered?
I’m a community activist who wears many hats. That means I multi-task! I educate people (HIV 101, clinical quality management) and am involved with the Coalition to End Discrimination and Stigma. I advocate for women’s issues in the ACTG and beyond. I’m the founder of the IDPCAB and a leader at the nonprofit Hyacinth. All of this advocacy is done as a volunteer—with no salary! I just love what I do.
What are your future hopes for the ACTG and HIV research?
I hope HIV researchers find a cure and ways to eradicate HIV reservoirs. I hope the ACTG continues work on co-morbidities, even after we find a cure. Once we cure HIV, the other comorbidities will all still be there.