Long-Term Survivors of HIV - Honouring the Past, Shaping the Future

Why?

Advances in HIV treatment mean that many people diagnosed in the early years of the epidemic are now ageing and thriving. These long-term and lifetime survivors carry a powerful legacy of resilience, activism, and lived experience that has shaped today’s HIV response. Yet their stories, knowledge, and insights risk being lost. This project exists to honour that legacy, address the unique challenges of ageing with HIV, and ensure that survivor voices continue to guide advocacy, care, and policy for future generations.

What?

The Long-Term Survivors of HIV Summit is a three-day Legacy Meeting that brings together long-term and 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.

With whom?

The project is led by the European AIDS Treatment Group (EATG) in partnership with Ribbon – A Center of Excellence (USA), The Reunion Project (USA), and Realize (Canada). At its heart are long-term and lifetime survivors of HIV, whose lived experience drives the content, direction, and outcomes of the work. Community organisations, advocates, healthcare professionals, and policymakers will also engage with and benefit from the project’s outputs.

How?

The project combines pre-meeting webinars, a three-day in-person Summit, and ongoing digital engagement. Participants take part in facilitated storytelling sessions, skills-building workshops, and thematic dialogue on issues such as mental health, stigma, healthcare navigation, and ageing. Stories are collected through written pieces and video blogs and shared via a dedicated online platform and social media channels. Post-meeting activities include the publication of a Legacy Report, continued story collection, and mentorship and fellowship opportunities to sustain intergenerational exchange.

For what outcome?

The project will preserve the history of long-term survivorship, amplify survivor voices, and strengthen collaboration across generations and regions. Key outcomes include a living digital archive of survivor stories, increased awareness of the realities of ageing with HIV, actionable recommendations for care and policy, and a sustainable model for legacy storytelling. Ultimately, the project aims to honour the past, empower the present, and shape a more inclusive and responsive future for people ageing with HIV.

As part of our collaboration, our project partner The Reunion Project shared their inclusive understanding of what constitutes a long-term survivor of HIV. The definition below reflects their perspective and is presented here for contextual purposes, rather than as an official definition of our project.

Who is a long-term survivor of HIV?

The definition of a long-term survivor is expansive. There are many ways to be a long-term survivor of HIV. As a welcoming and open network, The Reunion Project holds an inclusive view of HIV long-term survival:

• Many people who identify as long-term survivors have been living with HIV for 10 years or more.
• Others feel that their long-term survival is shaped by the experience of living with HIV since before the time when there was any effective treatment (~1996).
• Some feel that their long-term survival experience is marked by going through different eras of their life—perhaps from being young adults to now being elders—while living with HIV.
• Lifetime survivors, also known as Dandelions, are people who have been living with HIV since birth or early childhood
• We also welcome people who are not living with HIV to join our network or workgroups as allies, many of them have been involved with or affected by HIV for many years.

Source: The Reunion Project