Before medicine brought hope, people living with HIV were surviving.
They buried friends, fought for care, endured silence, and found ways to live through a crisis that was supposed to end their lives. Today, more than 40 years after the start of the HIV epidemic, many of those survivors are still here.
They are living proof that survival is not the end of the story.
For HIV long-term survivors, legacy exceeds remembrance. It is about what endures. It’s about the stories shared, the battles fought, and the communities built. Their legacy lives on in what they carry forward: resilience, truth, love and the determination to ensure no one is forgotten.
At The Reunion Project (TRP), legacy means empowering long-term survivors to shape the narrative of HIV, not as victims of the past but as leaders of the future. It means honoring their wisdom and recognizing their experience as expertise. It is a commitment to ensuring that aging with HIV is met with dignity, opportunity and the power to build lasting change.
That is the heart of TRP’s mission.
Founded in 2015, TRP is the only national, peer-led organization in the United States dedicated to long-term survivors of HIV. These survivors came of age during a time of fear, misinformation and immense loss. Many outlived not only their partners and friends but also their expectations of the future.
Today, they are aging. And many are aging alone.
“HIV didn’t just impact our health,” one survivor shared at a recent town hall. “It took our partners, our friends, our jobs, and in some cases, our futures. But we’re still here. And that matters.”
TRP offers space for long-term survivors of HIV to express and amplify their voices so that they can be heard and understood. Through national town halls, held in virtual and in-person formats, the organization brings survivors together to share stories, build community, and find healing. These gatherings are more than support meetings. They are powerful affirmations of identity and purpose.
For TRP, legacy is never static. It is continually shaped by action and advocacy. It is living and evolving. It is built every time a long-term survivor chooses to speak up, lead, or support someone else navigating life with HIV. It is about leaving a mark not only through memory but also through mentorship, advocacy and systems change.
‘We’ve lived through what happens when public health is ignored, when communities are dehumanized, and when silence equals death.’
Through its partnership with Gilead’s HIV Age Positively Initiative, TRP has extended its reach and deepened its impact. But beyond programs and platforms, it is the people, the long-term survivors, who give this movement its strength.
They are mentoring newly diagnosed individuals. They are pushing for changes in care systems. They are demanding to be included in research and policy decisions. Their stories are reshaping the narrative of what it means to age with HIV.
And their work has never been more urgent.
In today’s political climate, hard-won progress for people aging with HIV is under threat. Long-term survivors face growing uncertainty as access to healthcare, medications and supportive services becomes increasingly politicized. Social safety net programs that many have relied on for decades are being reduced or restricted, and funding priorities are shifting away from older populations. These are not abstract changes. They directly impact how survivors live, work, and care for themselves.
For many long-term survivors, these developments are painfully familiar. They echo a time when their needs were overlooked and their lives considered expendable. The fear is not just about losing resources but about being forgotten once again.
“We’ve seen this before,” said one TRP advocate. “We’ve lived through what happens when public health is ignored, when communities are dehumanized, and when silence equals death. That’s not history for us. That’s memory.”
In this environment, legacy also means resistance. It means standing up for a future that is more just and inclusive than the past. It means telling the truth, even when it is difficult. And it means refusing to be erased.
TRP’s leadership structure reinforces that vision. Its steering committee includes people of color, transgender individuals, and older adults, many of whom are HIV long-term survivors. This leadership reflects the communities most impacted by the epidemic and ensures that TRP’s decisions are rooted in lived experience.
TRP also prioritizes access and inclusion. The organization provides multilingual materials and live interpretation to ensure language is never a barrier. Initiatives and resources are designed with disability access in mind. No one should be left out of the conversation.
Partnerships with entities like the National Working Positive Coalition help to further expand TRP’s reach. Together, they connect survivors with tools to return to work, navigate benefits systems, and plan for the years ahead. These efforts recognize that the needs of long-term survivors are not static. They shift with time, just like the people themselves.
But even with these resources, the challenges remain significant.
Too many long-term survivors continue to live in poverty. Others face untreated trauma, mental health struggles, or social isolation. Despite years of advocacy, many still feel invisible in conversations about funding, research, and care. The idea of aging with HIV, with comfort, dignity and choice, is still out of reach for too many.
This is why TRP exists. Not simply to bear witness to the past but to build a different future.
To honor the legacy of long-term survivors, we cannot limit our response to memorials or acknowledgments. We must invest in their leadership, center their health and well-being, and allow them to shape the systems that have too often failed them.
Their stories are not only important; they are essential. Their voices belong at the heart of our public health response, and their courage should help inform every decision about the future of HIV care.
The truth is that legacy is not something left behind after someone is gone. It is built every day. It grows in the spaces where survivors choose to speak, support, lead, and connect.
Long-term survivors of HIV are holding us accountable. They are leaving a legacy, not quietly or passively, but with purpose, clarity, and power.
And we must be willing to listen.
Jeff Berry is executive director of The Reunion Project, and a long-term survivor of HIV.
Photo caption: Programming by The Reunion Project.
Photo credit: Larry Bryant
