HIV Long-Term Survivors Anthology
San Francisco AIDS Foundation (SFAF) and The Reunion Project are working with Cleve Jones to produce an anthology that tells the stories of HIV Long-Term Survivors (LTS).
For this project, we define LTS as individuals diagnosed with HIV during the critical period from 1981 to 1996, prior to the availability of Highly Active Antiretroviral Therapy (HAART). In the summer of 2023, Vince Crisostomo, SFAF’s director of aging services, initially reached out to gauge potential interest in collaboration before the 2023 U.S. Conference on HIV/AIDS (USCHA). We then followed up with Jeff Berry of The Reunion Project as an additional lead.
Project Background
Between 2021 and 2022, Cleve Jones and Vince Crisostomo conducted several online writing workshops inspired by Cleve’s sweeping memoir, “When We Rise: My Life in the Movement.” The stories that emerged from these workshops were not only insightful but also deeply moving. Cleve observed that these narratives often represent voices overlooked in discussions surrounding the history of HIV and AIDS.
From those workshops, the concept of an anthology was born—one that aims to chronicle the lived experiences of those identified as The AIDS Generation. This generation endured the burden of the AIDS pandemic, where an HIV diagnosis was often equated with a death sentence. They faced initial diagnoses, the fear of contagion, and the heart-wrenching loss of friends, often witnessing their entire social circles vanish. They were marginalized by public health officials, ridiculed by politicians, condemned by religious leaders, and shunned within their communities. Many bravely volunteered as unpaid participants in early pharmaceutical trials, enduring toxic treatments and enduring the lasting trauma of that era.
Today, individuals over the age of 50 represent the largest segment of all people living with HIV in the U.S. With advancements in effective HIV treatment, those on antiretroviral therapy can maintain viral suppression and lead long, healthy lives. Consequently, the number of older adults living with HIV is on the rise—currently, over 50 percent of individuals living with HIV in the United States are aged 50 and older, a figure projected to reach 70 percent by 2030. Unfortunately, our medical and social service systems remain largely unprepared to address the unique needs of this demographic.
We will strive for ethnic, gender, racial, and geographic representation. We believe that this anthology will not only amplify the voices of long-term survivors but also serve as a critical resource for understanding their experiences and challenges, documenting their history in their own words—a history we feel would otherwise be lost. We invite you to join us in this collaborative effort to bring these important stories to light.
We hope that, in collaboration, you will use your existing networks to publicize this project and help us find stories that have previously gone unheard, particularly those from underrepresented communities.
The Working Title: “We Live: Voices of the First Generation to Survive HIV/AIDS”
Project Themes
How did you find out? Where were you? What happened?
Many in our generation got terribly ill and died, what was that like?
We were essentially guinea pigs, buying our lives in six-month chunks.
What happened with our partners, our sex lives, and our families’ response?
Some people, even agnostics, had faith that we might survive somehow. Many joined a 12-step community for support.
Many of us found everything derailed and upended, but some of us still went to university and grad school. And as a result, many of us remain employed and even have health insurance.
With a lack of support or funding, many of us joined groups like ACT UP to advocate for change.
What are the challenges of aging with AIDS? How do we make sense of the world as our social networks are shattered by friends dying? How to get through the last chapter of our lives?
The possibility of a world without HIV and AIDS.
Co-Sponsored By
