The Lifetime Survivors Network began in 2019 as a special interest group attached to the National HIV & Aging Advocacy Network (NHAAN). Starting small with only  5 to 7 members, the group's mission was to create a space to discuss the unique experiences of aging with HIV from birth, through childhood, adolescence and into adulthood. 

 

In 2022, after being awarded a 50+ Strong and Healthy grant from NMAC — which generally supports long term survivors over the age of 50 — the cohort presented a workshop titled “Mental Health of People with Vertically Acquired HIV” at the USCHA (The United States Conference on HIV/AIDS) in Puerto Rico. Opening up this long overdue conversation created the momentum for the under-recognized HIV population to start a movement with the powerful statement: “we’re still here.”  The following year in 2023,  NMAC awarded  12 scholarships to members of the growing cohort, bringing together — for the first time — the largest group of people perinatally infected to be witnessed together. During the demonstration at the USCHA in Washington D.C, the group took the stage to officially introduce themselves to the HIV community at large as: “Lifetime Survivors.”

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The term “Lifetime Survivors” was created to replace historical categorizations such as “perinatals” or “verticals” and to make a  distinction from “long term survivors” — defined as people living with HIV since before available treatment. This name seeks to empower and acknowledge the  strength and resilience of people living with the virus for an entire lifetime. It includes those who acquired the illness not only from birth, but from blood transfusion and in some cases sexual violence.

 

Over the past 6 years the group has grown into an independent National Network with over 75 members and was incorporated officially in 2024.

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