As part of the Long-Term Survivors of HIV – Honouring the Past, Shaping the Future, the European AIDS Treatment Group (EATG) in partnership with Ribbon – A Center of Excellence (USA), The Reunion Project (USA), and Realize (Canada) are organising a Legacy Meeting in Sitges, Barcelona (Spain) on 25 – 28 March 2026.

 

The Long-Term Survivors of HIV Summit is a three-day meeting that brings together (30) long-term and (9) lifetime HIV survivors from across Europe, North America, and beyond. Through storytelling, dialogue, and collaboration, the project will create a shared “Legacy Chest” of written and video narratives, reflections, and recommendations that document lived experiences of ageing with HIV and translate them into tools for advocacy, education, and system change.

 

During the Summit, participants will have the opportunity to collaboratively discuss the needs of ageing populations and explore ways to address them, while also providing a platform for survivors to share their perspectives, challenges, and recommendations. The Summit will document and honour the experiences of long-term survivors, ensuring their stories are not forgotten, while remembering those who have paved the way forward.

 

Following the Summit, EATG and partner organisations will translate the stories of long-term survivors into tools to improve health outcomes, combat stigma, and highlight the resilience of people once deemed to be lost.

 

Background

 

Advances in HIV treatment have transformed the landscape of the disease, shifting it from a death sentence to a manageable chronic condition. Consequently, many individuals diagnosed in the early stages of the epidemic are now living long and healthy lives, becoming long-term survivors. This demographic, spanning Europe, the United States, and Canada, carries a profound legacy of resilience, advocacy, and invaluable lived experience.

 

However, the intersection of ageing and HIV presents unique challenges, and long-term survivors and lifetime survivors are equipped to help our advocacy through storytelling:

 

Managing Comorbidities: Older adults with HIV and lifetime survivors are at increased risk for age-related conditions, requiring integrated and specialized care from care professionals in hospitals, at home and in the community.

 

Addressing Mental Health: The long-term impact of stigma, trauma, and social isolation can contribute to mental health challenges that require tailored support. Long-term survivors and lifetime survivors’ stories of navigating HIV and mental health are critical to address several areas of healthy survivorship.

 

Combating Stigma: Despite progress, stigma persists, impacting access to care, social support, and overall well-being. Long-term survivors have implied evidence that storytelling is a significant tool to combat stigma and discrimination. Through storytelling, there is a personal liberation, the opportunity for others to learn and share, and the chance to teach communities, care professionals, and stakeholders.

 

Navigating Systems: Healthcare and social support systems are often not designed to address the specific needs of people ageing with HIV. Long-term survivors have helped to shape our care systems, and through storytelling, we can help and support roadmaps for other people living with HIV, communities, care professionals, and stakeholders.