On June 5, we commemorated HIV Long-Term Survivors Awareness Day (HLTSAD). First observed in 2014, this day is dedicated to honoring long-term survivors of HIV and increasing awareness about their needs, challenges, and journeys. June 5 was chosen for this annual observance as it marks the anniversary of the first official reporting of the AIDS epidemic in 1981, when the CDC reported five cases of a mysterious disease affecting young gay men. This date is considered the beginning of the AIDS epidemic.
Today, there are several definitions for long-term survivors of HIV, as they encompass a diverse group of individuals diagnosed with HIV. One definition refers to those who have been living with HIV since before the introduction of HIV drugs or highly active antiretroviral therapy (HAART) in 1996. This group is sometimes referred to as pre-HAART Long-Term Survivors. Another definition includes people who have been living with HIV for over ten years and were diagnosed after 1996, known as post-HAART Long-Term Survivors.
It’s important to note that not all long-term survivors of HIV are older adults. There is a group of long-term survivors who are often excluded from discussions about living long lives with HIV. This group includes Gen X, Millennial, and Generation Z adults and young people who acquired HIV at birth or at a very young age and have been living with HIV for decades. They are known as lifetime survivors or Dandelions and face issues similar to older adult long-term survivors while navigating their unique concerns.
“When I was a child, I didn’t understand what it meant to have HIV until a social worker from the hospital explained it to me. They emphasized the importance of being sensitive about disclosing my status due to the stigma surrounding HIV,” shared Porchia Dees, co-founder and visionary of the Lifetime Survivors Network. Growing up, Dees felt isolated because she didn’t know any other young people living with HIV. It wasn’t until she transitioned out of pediatric care that she began forming meaningful connections with other adults living with HIV. However, she still struggled to find other individuals who, like her, had acquired HIV from birth.
In September of 2023, the largest group of individuals who have been living with HIV since birth came together at the United States Conference on HIV/AIDS (USCHA) in Washington, DC. This diverse group took the stage and introduced themselves as lifetime survivors. Inspired by the poetry and activism of Mary Bowman, a lifetime survivor who sadly passed away in 2019, the group called themselves “Dandelions.” They shared essential demands with the HIV community, calling for recognition and addressing the lack of research, programming, and representation for their community.
The year before, Dees received a scholarship intended for long-term survivors over the age of 50 to attend the conference. Even though she was not yet 50, she had been living with HIV her entire life. At 32, she had been living with HIV for as long as, if not longer than, many of the individuals who were 50 and older. She applied for the scholarship and wrote an essay on why she should receive it. She was the only person under 50 chosen to receive the scholarship.
The 50+ scholars program later established the National HIV and Aging Advocacy Network. Dees also applied to join this network and expressed her desire to connect with other lifetime survivors. She took the opportunity to create a special interest group for people who have been living with HIV since birth or early childhood. The group started with few members but eventually grew and evolved into the Lifetime Survivors Network, of which Dees is a co-creator and visionary. Another lifetime survivor, co-creator, and visionary, Grissel Granados, assisted her throughout this process.
Granados shared her reflections on the conference experience, emphasizing how speaking out alongside other lifetime survivors felt like an affirmation of their experiences growing up, as many of them had been isolated from one another. She felt their collective demonstration at the USCHA was long overdue, but the timing was perfect. Now, as adults, they can speak for themselves rather than have their stories told through the lens of providers or caregivers.
Dees expressed her surprise at how many people had never considered lifetime survivors before they stood together to speak out. She felt that they were unicorns in the movement and that it was necessary to take such significant action to get people’s attention and educate them about who they are.
“When you look at the HIV movement, [Dandelions] are often passed over, ignored, or not included,” said Antoinette Jones, co-executive director of the Dandelions Movement. She continued, “For years, we’ve seen Dandelions sprout throughout the movement; now, it’s time for people in this field to see what we can accomplish through collective power.”
Derinthia “Unique” Williams, co-executive director of the Dandelions Movement, shared her thoughts on the future of the HIV movement, emphasizing the importance of unity and alignment to prevent division and decline. She shared, “Being in full accord and of one mind will keep us from dividing and falling. While we may have differing approaches to achieving our desired outcomes for the movement, each of our contributions shapes a more impactful and dynamic movement for Dandelions and lifetime survivors.”
Lifetime survivors like Dees, Granados, Jones, and Williams expressed frustrations about their communities being overlooked during the transition from pediatric to adult care. As they moved into adult care, they were immediately grouped with other adults living with HIV.
Organizations like the Lifetime Survivors Network and the Dandelions Movement call for consistent support to address the lack of comprehensive data that tracks the experiences of lifetime survivors from childhood into adulthood. They aim to solidify networks that connect lifetime survivors who have been left isolated and to work with healthcare providers and researchers to establish best practices for the care and well-being of those who acquired HIV at birth or in childhood. Granados shared, “We don’t want to be [the flavor of the moment] if that doesn’t come with real action. We need people to support us in building our capacity and in making connections that allow us to help our work take off to do what other networks of people living with HIV have been able to do.”
Lifetime survivors, including Dees, Granados, Jones, and Williams, credit activists and other lifetime survivors like Hydeia Broadbent and Tiffany Marrero for their tireless advocacy, love, and creativity. Although Marrero passed away in 2023 and Broadbent passed away in 2024, the legacy of radical love and cultural transformation lives on through organizations such as the Lifetime Survivors Network and the Dandelions Movement.
Lifetime survivors wishing to connect with the Dandelions Movement can click here to visit their website. To connect with the Lifetime Survivors Network, click here to visit them on Facebook.
This publication received support from Partnering and Communicating Together (PACT), a funded partnership between the Centers for Disease Control and Prevention (CDC), the Division of HIV Prevention, and some of the nation’s leading organizations, including AIDS United, which represents the populations hardest-hit by HIV. Learn more at Let’s Stop HIV Together.
