Advocacy of women long-term survivors of HIV has been instrumental in bringing greater attention to the unique needs of those who have been living with HIV and its dynamic challenges for many years. That crucial attention is amplified each year on June 5, HIV Long-Term Survivors Awareness Day (#HLTSAD). First observed in 2014, it is a day to recognize the needs and contributions of this diverse group.
The voices, perspectives, and leadership of long-term survivors – including Dandelions, who are long-term survivors that acquired HIV at birth or as young children – have been integral to The Well Project since our very beginning. Here, in keeping with the HLTSAD 2025 theme of "Leading with Legacy," we offer a sampling of recent writings by, or in conversation with, long-term survivors from The Well Project's community of bloggers, staff, and community advisory board members.
Articles by Long-Term Survivors on Our A Girl Like Me Blog
"I can't help but start thinking about what my legacy will be. How will I be remembered when I'm gone? I've never really cared that much about what people think of me (though deep down I do), but this is important to me. I want to be remembered well for good reasons. But to some extent we have no control over the thoughts of others." – from "My Rock Gods Are Old Now" (May 28, 2024) by Katie Willingham
"What do you do when the life you want so desperately to forget collides with the life you've created? You feel." – from "Good Morning, World!" (May 23, 2024) by Connie L. Johnson
"If we truly want to build communities rooted in justice and healing, that work has to start from within. That means putting systems in place that honor the people you claim to serve. That means paying survivors on time. That means not taking advantage of our desperation, our hope, or our generosity." – from "When the Help Hurts: How Delayed Payments from Nonprofits Mirror the Harm They're Meant to Undo" (April 28, 2025) by Harmony Rey Zorio
"With a broken heart, learning to pick up my life, I've had to relearn to live again and to find not only my points of joy as well as love language, but I also had to work to LOVE my BODY!" – from "Weighing In?! No, Maybe Not!" (December 7, 2023) by arnoldmom
"Advocacy and leadership are powerful tools in addressing the difficulties faced by non-binary and transgender individuals living with HIV. By raising awareness, challenging stereotypes, and promoting inclusivity, we can work towards dismantling the barriers that perpetuate discrimination and hinder access to resources." – from "Navigating the Intersection: My Journey with HIV as a Transgender Latina living in the South of USA" (November 13, 2023) by Arianna Lint
"I must admit in certain areas in my life I finally realized I was being a people pleaser. I never looked at it like that until I saw how it has affected me. I would agree to things I would not necessarily feel comfortable with, or was too tired to attend, but always showed up. I always found a way to push through to show up for people, not realizing that it's okay to say no for a better me." – from "My Confessions" (February 29, 2024) by Justine Davenport
"If we don't speak up about what we are dealing with regarding treatment side effects (or whatever it is), who will know? Who will listen? Who will care?
And how will things ever improve for those who come after us?
Of course, I'm grateful to be alive, but…
This does not mean I or you must be quiet." – from "Normalise HIV Conversation" (June 13, 2024) by Jyoti Dhawale-Surve
"I don't care how many people tell me that I don't look my age!! Yes, I take extreme care of myself and I have good genetics and I'm extremely proud and do not hide my age. You see, I am a living miracle so it's an honor to let people know how long I have been on this path of roses full of thorns." – from "I Never Thought I Would Make It Past 50 Years Old" (October 14, 2024) by Maria Mejia
"It's really a big thing for others to thrive and live happily.
When diagnosed a person confides in me and trusts my guidance and love.
I kill stigma one day, one person at a time.
Doors are opening and I feel alive.
This journey has not been easy yet I overcome
Those speed bumps." – from "Detaching From Trauma" (May 5, 2025) by Angel Stetson
Event Coverage by and/or Concerning Long-Term Survivors
"Our workshop focused on illuminating the diverse experiences of women aging with HIV, focusing on both older women living with the virus and younger women who acquired HIV perinatally or in childhood. We wanted to foster representation through storytelling and shared experiences, examining the socio-behavioral factors that shape the lives of women living with HIV—such as age, race, sexual and gender identity, trauma, educational status, and financial stability—and identifying solutions to dismantle these types of barriers. …
"When we listen to others, often we learn just how many commonalities exist and can focus on learning from each other rather than the comparisons that keep us apart." – from "Bridging Generations in HIV: A Recap from the 2025 Women as the Face of AIDS Summit" (May 28, 2025) by Bridgette Picou, LVN, ACLPN
"As I approach my 55th birthday, my takeaways from the Silver Zone include being kind to oneself, embracing the wisdom that menopause brings, and recognizing that I am enough just as I am." – from "Listening to Older Women Across the Globe: An Overview of AIDS 2024" (August 21, 2024) by Louise Vallace
"What struck me most was the sense of purpose and passion that defined every moment of the summit. It was clear that each person in attendance was driven by a deep commitment to creating positive change and supporting one another." – from "Hope and Resilience: My Experience at the Long-Term Survivors Summit, Indianapolis" (June 6, 2024) by Bose Olotu Oladayo on A Girl Like Me
"I began to work very hard at dealing with my mental health ... I had begun an advocacy program that addressed identifying and addressing my own needs first before I could address those of anyone else. This time when the scholarship applications came out for AIDSWatch 2024 I had the confidence to apply." – from "My Road to AIDSWatch 2024" (April 1, 2024) by Marcya Gullatte on A Girl Like Me
"I expected to hear about some form of injection as a cure, similar to a vaccine. But I was quite mistaken. Panelists talked about all kinds of details and dynamics around finding a cure for HIV." – from "Learning About HIV Cure Research from Long-Term Survivors: A Recap from USCHA 2023" (September 26, 2023) by Marissa Gonzalez
"Last year at USCHA I stood in a room and said, We are not long-term survivors, but we are LIFETIME SURVIVORS. Never would I have thought that by me saying that name, that term, a year later I would be standing on the main stage with my fellow Lifetime Survivors and Dandelions reclaiming our time back. That one phrase has changed the game in the last year!" – from "I'm a Lifetime Survivor — Put Some Respect on My Name" (September 15, 2023) by Kim Canady on A Girl Like Me
Do you identify as a long-term survivor? Share your story for our partner organization The Reunion Project's anthology!
