Sitges, Spain – A gathering of remarkable resilience and historical importance begins this week as long-term survivors of HIV converge in Sitges, Barcelona, for the Long-Term Survivors of HIV Summit. From March 25–28, 2026, the event, hosted by the European AIDS Treatment Group (EATG) alongside Ribbon – A Center of Excellence (USA), The Reunion Project (USA), and Realize (Canada), aims to honor the individuals who navigated the earliest and most devastating years of the epidemic and to ensure their hard-won knowledge shapes the future of HIV care and advocacy.
This isn’t simply a conference; it’s a deliberate act of recognition for those who transformed the landscape of HIV from a near-certain death sentence to a manageable chronic condition. These individuals – diagnosed in the 1980s and 90s, before effective treatments were widely available – not only survived but actively fought for their lives and the lives of others, building communities and demanding change in the face of widespread stigma and systemic failures. The summit represents a crucial opportunity to capture and preserve their experiences, ensuring their voices continue to guide the response to HIV for generations to come.
The summit will bring together long-term survivors and lifetime survivors from across Europe and North America. Participants will collaboratively create a “Legacy Chest,” a living archive intended to document their stories, reflections, and demands. This archive will serve as a vital resource for future advocacy, education, and systemic reform, according to the EATG’s event page. More details about the summit’s agenda and goals can be found on the EATG website.
Reclaiming Narratives and Challenging Silence
At its core, the Long-Term Survivors of HIV Summit is about reclaiming power. For decades, the narratives surrounding HIV were often controlled by fear, misinformation, and stigma. Those who lived through the epidemic were frequently marginalized and silenced. This gathering seeks to reverse that dynamic, empowering survivors to share their stories on their own terms and to challenge the persistent silence that continues to surround the long-term impacts of HIV. The summit recognizes that these individuals are not merely witnesses to history, but experts whose lived experience offers invaluable insights into resilience, healthcare navigation, and the enduring effects of trauma.
Participants will engage in focused discussions around four key themes. The first, “Moments that defined survival,” will encourage reflection on pivotal points in their journeys, connecting individual experiences to the broader historical context of the epidemic. The second, “What we did to survive and resist,” will explore the strategies they employed to support themselves and others, build communities in the absence of adequate systems, and engage in collective action. The third, “Lessons learned through lived experience,” will delve into the complexities of resilience, mental health, dignity, and navigating healthcare systems burdened by stigma. Finally, “What must be carried forward” will focus on identifying the knowledge and lessons that future generations need to understand, the changes that still need to be made, and the enduring values of love, care, and justice that emerged from the crisis.
The Enduring Challenges of Aging with HIV
Whereas medical advancements have dramatically improved the lives of people living with HIV, significant challenges remain, particularly for those who have been living with the virus for decades. According to the EATG’s project page on long-term survivors, aging with HIV presents unique and often under-recognized complexities. These include an increased risk of comorbidities, such as cardiovascular disease, kidney disease, and certain cancers, as well as mental health challenges stemming from years of trauma and stigma.
The summit also serves as an act of remembrance, honoring those lost to AIDS-related complications and acknowledging the courage and activism that paved the way for today’s advancements. The organizers emphasize the importance of remembering the profound losses experienced by the community and recognizing the debt owed to those who fought tirelessly for research, treatment, and acceptance.
Despite significant progress in treatment and prevention, stigma surrounding HIV persists, contributing to discrimination and hindering access to care. Systems often fall short in addressing the specific needs of long-term survivors, and their voices remain underrepresented in policy discussions. The summit aims to address these shortcomings by amplifying the resilience and leadership of long-term survivors and translating their insights into concrete tools for change.
Looking Ahead: From Stories to Systemic Change
Following the summit, the EATG and its partners plan to transform the stories and insights gathered into actionable strategies to improve health outcomes and drive systemic change. This includes developing resources for healthcare providers, advocating for policies that address the unique needs of aging individuals with HIV, and creating educational materials to combat stigma and promote understanding. The project is supported by Gilead Sciences, ViiV Healthcare, and Merck, Sharp & Dohme.
The Long-Term Survivors of HIV Summit represents a critical moment for reflection, remembrance, and renewal. It is a testament to the enduring power of community and a call to action to ensure that the lessons learned from the epidemic continue to inform the fight against HIV for years to come. The next step will be the publication of the “Legacy Chest” findings and the implementation of the resulting advocacy and educational initiatives, expected in late 2026.
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Disclaimer: This article provides information for general knowledge and informational purposes only, and does not constitute medical advice. It is essential to consult with a qualified healthcare professional for any health concerns or before making any decisions related to your health or treatment.
