HIV Long-Term Survivors Anthology
San Francisco AIDS Foundation (SFAF), The Reunion Project, and Cleve Jones are teaming with writer Tim Murphy to create an anthology of oral and written histories of long-term survivors (LTS) of HIV and AIDS.
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”
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As our generation passes away, people aren't going to remember what happened. This part of the history will be gone. And it's a part of our history that needs to be known so we don’t repeat it. Those of us aging with HIV need to lend our voices, otherwise someone else will write the story and it won’t be the story we lived.Vincent Crisostomo Long-term Survivor
Project Themes
This theme captures the pivotal moment of diagnosis and the subsequent decision to disclose one’s status. It’s essential to explore the emotional complexity surrounding these experiences. Consider writing about your experience with societal stigma, personal relationships, and the context in which individuals learned their status.
- Prompt 1: Describe the moment you found out you were HIV positive. Where were you, who were you with, and what was your immediate reaction?
- Prompt 2: Reflect on your experience of disclosing your HIV status to someone significant in your life. How did that conversation unfold, and what emotions did it evoke?
- Prompt 3: Recall any societal or personal challenges you faced when you first learned about your diagnosis. How did these challenges influence your understanding of HIV/AIDS and your identity?
The profound impact of illness and loss cannot be understated. Survivors often have vivid memories of the early years of the epidemic, witnessing friends and loved ones succumb to AIDS. This theme can delve into the psychological toll of fear, both of the disease itself and of societal rejection, as well as the coping mechanisms individuals developed during those times.
- Prompt 1: Write about a time when you or someone you knew experienced a severe health crisis related to HIV. What were the physical and emotional impacts of that experience?
- Prompt 2: Reflect on the losses you have faced due to the epidemic. How did the death of friends or loved ones affect your perspective on life and illness?
- Prompt 3: Describe the fears you encountered in the early years of the epidemic. How did these fears manifest in your daily life, and how have they changed over time?
This section can highlight the evolution of treatment options and the journey from early experimental drugs to today’s effective antiretroviral therapies. We encourage stories of resilience, including the struggle for access to care and the role of healthcare professionals. It’s also vital to capture moments of hope that emerged from advancements in treatment and the community’s collective strength.
- Prompt 1: Share your experience with the early treatments you received for HIV. What were the challenges and successes of managing your health during that time?
- Prompt 2: Reflect on a moment when you felt a sense of hope related to treatment advancements. What specific changes or developments inspired you?
- Prompt 3: Discuss your relationship with healthcare providers. How have they influenced your journey as a Long-Term Survivor, and what role did they play in your care?
The dynamics of love and family relationships can be deeply affected by an HIV diagnosis. This theme can explore how partners reacted to the news, the impact on sexual health and intimacy, and how family dynamics shifted. It may also include stories of support, acceptance, and love, showcasing the different ways relationships can thrive despite challenges.
- Prompt 1: Write about how your HIV status affected your romantic relationships. What challenges did you face, and how did you navigate intimacy?
- Prompt 2: Reflect on your family’s response to your diagnosis. How did their support or lack of support shape your experience with HIV?
- Prompt 3: Describe a moment of connection or intimacy that felt particularly significant during your journey as an HIV Long-Term Survivor. What made it meaningful?
Faith can be a powerful source of strength and comfort for many individuals living with HIV. This theme can explore how spirituality shaped their coping strategies, provided community support, or even led to personal transformation. We encourage narratives that reflect on the intersection of faith and health and the role of spiritual communities in recovery.
- Prompt 1: Explore the role that faith or spirituality has played in your life since your diagnosis. How has it shaped your outlook, particularly during difficult times?
- Prompt 2: Write about your experience with any support groups or 12-step programs. How did these communities contribute to your healing and recovery?
- Prompt 3: Reflect on a moment when you felt a deep sense of hope or purpose in your faith journey related to your experience with HIV.
For many Long-Term Survivors, a diagnosis can lead to significant disruptions in education and career paths. This theme can explore how individuals adapted, found new opportunities, or faced barriers in pursuing their goals. It can also highlight stories of resilience, such as returning to school or finding fulfilling work in advocacy or health-related fields.
- Prompt 1: Discuss how your diagnosis impacted your educational path or career ambitions. What challenges did you face in pursuing your goals?
- Prompt 2: Reflect on any unexpected opportunities that arose from your experience as an HIV Long-Term Survivor. How did these shape your career or educational choices?
- Prompt 3: Write about your experience navigating health insurance and healthcare systems while managing your career and educational aspirations.
Activism has been a crucial response to the HIV/AIDS epidemic, providing a platform for advocacy and change. This theme can delve into personal journeys into activism, the motivations behind it, and the importance of representation in media and politics. Encourage stories about organizing efforts, community-building, and the impact of grassroots movements.
- Prompt 1: Share your journey into activism related to HIV/AIDS. What motivated you to become involved, and what impact did you hope to achieve?
- Prompt 2: Reflect on a specific event or rally you participated in that was significant to you. What were your feelings during that experience?
- Prompt 3: Discuss the importance of representation in the HIV/AIDS community. How have you seen changes over the years, and what more do you think needs to be done?
Aging with HIV presents unique challenges, including health management and social isolation. This theme can explore how individuals redefine their purpose as they age, the importance of building supportive networks, and the ways they maintain dignity in the face of stigma. Personal stories about adapting to changing health needs or finding new passions can be powerful.
- Prompt 1: Write about the unique challenges you face as an aging Long-Term Survivor. How has your perspective on aging changed since your diagnosis?
- Prompt 2: Reflect on the importance of community and support networks as you age. How have these relationships helped you navigate life as an older adult living with HIV?
- Prompt 3: Discuss how you find purpose and dignity in your life today. What activities or passions drive you, and how do you maintain a sense of fulfillment?
This theme encourages hope and vision for the future. Survivors can reflect on their dreams for a world free of AIDS, envisioning what that might look like in terms of healthcare, social attitudes, and public policy. Discussions about future generations, prevention strategies, and ongoing advocacy can be included to inspire and motivate readers.
- Prompt 1: Imagine a future where HIV/AIDS is no longer a public health crisis. What does that world look like to you, and how does it feel?
- Prompt 2: Reflect on the lessons learned from the HIV/AIDS epidemic. How can these lessons inform future public health initiatives and community support?
- Prompt 3: Write about your hopes for future generations living with HIV. What changes would you like to see in how society addresses and supports individuals with HIV?
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