For longtime Chicago activist Jeff Berry, becoming the first executive director of the Reunion Project—a national alliance centering aging persons living with HIV, which Berry co-founded in 2015—was a significant but logical professional leap.
Berry, who started in the new post in Sept. 2022, had been editor-in-chief at the publication Positively Aware since 2005 (he was named interim editor-in-chief the previous year as well). Positively Aware focuses on HIV/AIDS treatments and related information.
Berry co-founded the Reunion Project with San Francisco-based HIV advocate Matt Sharp, who was active for a number of years in Chicago. According to its website, the Reunion Project collaborates "with local and national HIV advocates, providers and researchers. Together, we convene and connect individuals and communities, sharing our experiences of survival and loss while honoring our past, and developing successful strategies for living and supporting one another—today and into the future."
Sharp and Berry first collaborated on the organization "at a time when people were starting to talk about long term survival and what that means," Berry said. "For those of us who survived the early days of the epidemic, we felt left behind by the very organizations that we had helped to create. The Reunion Project sprang out of this need for us to share our stories on survival and talk about resilience, and connecting to get ourselves out of isolation."
The issues facing long-term HIV survivors have long been expected by advocates.
"We were seeing long-term side effects from [HIV] medications," Berry said. "But we also are starting to see people with a greater number of co-morbidities than our [HIV-] negative counterparts. We're also seeing mental health issues—issues around isolation, issues around PTSD from all the trauma we experienced during the epidemic.
"We were losing our friends, family and community. Folks weren't there to pass the torch to us. We had to build these systems and organizations. Yet when we needed services around HIV and aging, they didn't exist."
The Reunion Project is now there to fill in the gaps as providers contend with what Berry called a "silver tsunami" of aging persons living with HIV.
He explained, "As our entire population is aging, I don't think our country—our society as a whole—is prepared for the baby boomers who are aging, let alone people with HIV who are aging. I think that there is an opportunity for community there.
"It's up to us to step up and help to build those systems that are going to be there to provide quality care and culturally appropriate care that's going to help us age with grace and dignity into our golden years."
Back in 1989, shortly after being diagnosed with HIV, Berry too was seeking services to help him live a healthful and productive life with the condition. He sought those services from the HIV/AIDS service provider TPAN, and also made personal and professional connections that would change his life.
He recalled, "I was at TPAN for almost 30 years. … I went there seeking services originally, and what I found was a community of people like me who were also struggling. That was how we exchanged information back then—through support groups, meetings. This was before the age of the internet.
"I kept getting this magazine [Positively Aware, which is published by TPAN] in the mail, … I had retired from my job DJ-ing at [gay nightclub] Bistro Too, and was kind of just in this space where I was ready for what was next."
Berry responded to an ad in the magazine seeking volunteers. That eventually led to a full-time position in Nov. 1992.
"I was always working on the magazine in one capacity or another," he explained. "I started out just answering phones. … Then I started doing distribution, and working in a number of different capacities, including maintaining the website and working on advertising."
After years of working for Positively Aware though, Berry was ready for a change: "I realized that I had done all that I had set out to do with the magazine all that I had set out to do. I realized that it was the perfect opportunity to kind of pass the torch and move on to something that I was passionate about."
Berry and the Reunion Project are now hiring a full-time senior program coordinator, and planning a series of nationwide town hall meetings that assist in developing, alongside existing local community organizations, programs for long-term survivors of HIV/AIDS. Reunion Project also programs events providing resources for persons with HIV returning to work after a long time outside the work force.
"What we don't want to ever do is go into a community or city and say, 'Here we've got this program for you. Isn't it great and wonderful?' Then we leave two days later," Berry said. "Rather we work with a community for a program that they want and they need, so that we can spark a network of long-term survivors in that community. That's how we build our alliances."
He added, "We're very proud of what we've done so far and what's coming in the years ahead."
Note: This article is part of News is Out's Caring for Community series, which is focused on the challenges and triumphs of giving and receiving care in the LGBTQ+ community. These stories have been created through a strategic partnership between AARP and News is Out. News is Out is a pioneering national collaborative including six of the leading local queer media outlets, including Windy City Times. Join the weekly News Is Out newsletter here: newsisout.com .
