They Became My Family is a portrait gallery celebrating the diverse community of the AIDS Clinical Trials Group (ACTG). The ACTG’s Global Community Advisory Board (GCAB) and Community Scientific Subcommittee (CSS) are exemplars of community engagement in clinical research. Across the world, local CABs provide opportunities for multidirectional communication between the ACTG and the communities it serves.
As part of my research on HIV treatment activism, I conducted a small set of interviews with ACTG community members to capture the ways they understand their participation in the network and to preserve this important legacy. These interviews provided so much rich information about ACTG community members’ motivations and desires for their involvement with the network.
These days, many community members leave the ACTG when their terms end or due to burnout, busy lives, or other competing priorities. Sometimes members pass away. Without a mechanism to preserve community’s voices, these valuable experiences are at risk of being lost. They Became My Family is simultaneously an effort to honor individual activist legacies and document the rich diversity of our network.
Self-portraits can be hand drawn, photographs, or some other image that the community member feels represents them. In the case of community members who have died, their friends/colleagues are welcome to submit a portrait of that person and a statement of how they remember that colleague. Those community members would be referred to only by first name in the interest of privacy, unless the honoree had been publicly open about their involvement with the ACTG.
The name of the gallery comes from an interview with Sharon Maxwell (1948-2016), two-time GCAB co-chair, beloved mentor to many, and tireless advocate for people living with HIV. When Sharon was asked what memories from her involvement with the ACTG she would remember fondly, she responded:
It’s the people that you meet. The caring, good-hearted people that you meet within the ACTG that just seem to be there to support you. They honestly became my family. I worked in graphic design so my world was advertising. That was my world before AIDS. After AIDS, the community just became one of people living with HIV and AIDS and Hepatitis and women, and everybody dealing with these kind of issues. That became my family now.
This portrait gallery is currently accepting submissions from current and former ACTG community members. You can submit answers to the questions here, and email your portrait to firstname.lastname@example.org. If you are submitting a photograph, you’ll need to sign and return a photo release also (download here).
Thank you for your time, and for all you’ve done for the ACTG community! Don’t forget send your self-portrait (drawn, collaged, photographed, painted, whatever you want) so that your portrait can be included in the gallery: email@example.com. If you are submitting a photograph, you’ll need to sign and return a photo release (download here).