Today, June 5, marks HIV Long-Term Survivors Awareness Day, commemorating the resilience of people who have lived longest with HIV while shining a light on their unique health, social, and long-term care needs. June 5 also marks the anniversary of the first official reports of the AIDS epidemic in 1981.
From March 25 -28, alongside participants from Canada, the U.S., and Europe, Realize Interim Co-Executive Director Kate Murzin attended The Long-Term Survivors of HIV Summit in Sitges, Spain, near Barcelona. The event was co-ordinated by Realize, European AIDS Treatment Group (EATG) in Europe, and Ribbon – A Center of Excellence, and The Reunion Project in the U.S.
The theme was “Honouring the Past, Shaping the Future.”
Thirty-seven long-term survivors of HIV – including both people aging with HIV and lifetime survivors born with HIV – were invited to share their stories. This created space for survivors from various communities and generations to come together, reflect, learn, and share experiences around ageing with HIV.
“The goal,” says Kate, “was to bring people together to preserve their stories through what we’re calling the Legacy Chest, while also exploring how their experiences can help shape future change around HIV and aging.”
The Legacy Chest will be a digital audiovisual collection meant to inspire, educate, and support advocacy in the years to come.
“As folks grow older with HIV and face other chronic illnesses and comorbidities, we don’t want to lose these extraordinary stories of overcoming government apathy, stigma, and isolation,” says Kate. “The experiences that shaped the collective response to the epidemic must be preserved.”
Each participant shared a brief snapshot of their HIV journey, with many stories focusing on the moment of impact that was receiving their HIV diagnosis. Another recurring theme was perseverance and rebuilding after hardship. Stigma, mental health challenges, and access to healthcare were spoken of openly as well, while resilience, survival, and activism were celebrated.
Long-term survivor Patience Magagula shared her story with Realize. Watch here:
In a sense, survivors noted, history is now repeating itself: many long-term survivors ran into systems unprepared to respond to their needs when first diagnosed with HIV. Now, as their needs have evolved — we are witnessing the first generation of people with HIV living to see older age — many supports have not.
Today, stigma and discrimination remain pressing concerns, particularly as people aging with HIV imagine relying on others for care. These are among the issues Realize continues to address — ensuring that long-term survivors are not only remembered for what they overcame, but supported in how they continue to live, age, and thrive.