HIV Long-Term Survivors Awareness Day (HLTSAD) is June 5th
Every June 5, we commemorate HIV Long-Term Survivors Awareness Day (HLTSAD), a day dedicated to honoring the remarkable resilience of those who have lived through the harrowing journey of HIV.
Established in 2014 by AIDS activist Tez Anderson, HLTSAD coincides with a significant moment in history: the first official reporting of the AIDS epidemic by the U.S. Centers for Disease Control and Prevention (CDC) on June 5, 1981. On that day, five cases of rare pneumonia in young gay men in California and New York marked the beginning of an epidemic that would reshape the world.
Decades later, the narrative of HIV has evolved from a period of fear and stigma to one of hope and progress. Today, nearly 50% of people with HIV in the United States are over the age of 50. By 2030, this number rises to 70%. Yet, with aging comes new challenges: by 2030, more than 80% will have at least one age-related medical condition, such as cancer or heart disease.
These statistics underscore an urgent public health issue that demands immediate attention and sustained action.
HLTSAD is not a one-day event. We are carrying our campaign throughout the year into 2025.
We use Pride Month to raise awareness that leads to action. Many of us were guinea pigs for first-line medications that caused side effects that haunt us today. Now, we are on the frontier of Aging with HIV and AIDS. We don’t have time to wait for the government to act—our healthcare needs are urgent.
“The Centers for Disease Control and Prevention estimate that 50% of people with HIV are older than 50 years and account for 70% of total deaths among people with HIV,”
—The Lancet HIV in a series on Ageing with HIV, February 24, 2022
The selection of June 5 for this annual observance coincides with the anniversary of the first official reporting of what became known as the AIDS epidemic on June 5, 1981. When the CDC [Centers for Disease Control and Prevention] first reported on five cases of a mysterious disease affecting young gay men. June 5, 1981 is considered the start of the AIDS pandemic.
Today, HIV Long-Term Survivors (HLTS) represent a diverse group of people diagnosed with HIV before the advent of Highly Active Antiretroviral Therapy or HAART in 1996. We make up about 25% of all people living with HIV and AIDS. 1.2 million people are living with HIV in the U.S. That makes about 300,000 long-term survivors, defined as individuals who acquired HIV before 1996 and the introduction of HAART.
Often overlooked, HLTS includes people born with HIV or who acquired the virus as babies and are now in their 30s and 40s. HLTS are also those living with HIV and AIDS for over 25 years.
We are developing a social media campaign and tangible calls to action to improve the quality of our lives.
It’s up to us to set our action plan addressing the present-day and future needs, issues, and challenges facing people living longest with HIV/AIDS.
HLTSAD is not a time to look back at our traumatic pasts. (That’s for World AIDS Day.) Our goal over the coming months is for YOU to set our agenda and priorities for moving forward and take action to make changes.
People living with HIV/AIDS deserve to age with dignity.
Some Priorities
Make the quality of life for HIV long-term survivors and older adults aging with HIV and AIDS a true priority
Demand universal treatment access to help end the HIV epidemic, which is the message of the #JourneyTo400K campaign from the team that created Undetectable Equals Untransmittable (#UequalsU)
Prioritize culturally aware mental health care
Overcome the challenges of poverty and economic insecurity
Fight discrimination and invisibility against older adults with HIV and AIDS. It is called “ageism.” We will not condone it.
Let’s Kick ASS—AIDS Survivor Syndrome started HLTSAD in 2014 and is the day’s sponsor.
Make a donation
Let’s Kick ASS AIDS Survivor Syndrome, a 501(c)(3) California non-profit started in 2013. We launched HLTSAD in 2014. LKA is the lead sponsor of the official awareness day.
Based in San Francisco, our goal is empowering HIV Long-Term Survivors to thrive, Beyond raising awareness o change our work is both local and national.
“The older adult living with HIV has demonstrated a resiliency that has allowed them to look beyond the uncertainty that an HIV/AIDS diagnosis imparts. They will need that resiliency even more. And maybe they can share with all of us how we too can overcome the uncertainty of tomorrow.”
— Stephen Karpiak Ph.D., Senior Director for Research at the ACRIA Center on HIV & Aging at GMHC.
“When we talk about long-term survivors, there is a degree of resilience and hardiness that has let people become long-term survivors. That is something to capitalize on.”
— Mark Brennan-Ing Ph.D., Senior Research Scientist at Brookdale Center for Healthy Aging, Hunter College, CUNY
With courage and compassion, we survived the darkest decades of the AIDS pandemic. It started 40 years ago, and AIDS is still a global pandemic.
Without access to effective treatments, survivors were forced to rely on themselves and each other. We exhibited strengths we didn’t know we had.
Let’s use the lessons we learned from AIDS to help the world cope with COVID-19 and a stark, stressful new reality where isolation is prevention.
As HIV/AIDS survivors, we’ve learned valuable lessons about living and survival, and we are ready to become elders, teachers, and leaders of our communities. They need support now and for the aftermath. Processing multiple casualties, the trauma of not being able to be with loved ones or watch them die alone on their iPads, and the inescapable nature of COVID will leave scars and traumatize the global community.
Without access to effective treatments, survivors were forced to rely on themselves and each other. We exhibited strengths we didn’t know we had. Let’s use the lessons we learned from AIDS to help the world cope with COVID-19 and a stark, stressful new reality where isolation is prevention.
As HIV/AIDS survivors, we’ve learned valuable lessons about living and survival, and we are ready to become elders, teachers, and leaders of our communities. Processing multiple casualties, the trauma of not being able to be with loved ones or watch them die alone on their iPads, and the inescapable nature of COVID will leave scars and traumatize the global community.
312,000 people living with HIV in the U.S. became positive before 1996.
That’s 25% of all 1.2 million living with HIV who are Pre-HAART survivors*
*American Psychological Association www.apa.org/pi/aids/resources/survivors-awareness.
Oh, and don’t chalk up our trauma to “PTSD”. It is way more prolonged and complex. It’s AIDS Survivor Syndrome (ASS).
A Safe Space Online to Find Peer-Support
Request to join here > https://www.facebook.com/groups/HLTSurvivorsLeague/
Let’s Kick ASS—AIDS Survivor Syndrome is the sponsor and originator of HLTSAD. Our mission is empowering HIV Long-Term Survivors to thrive through connection, engagement, and meaningful action since 2013. We are an all-volunteer, grassroots movement, united in compassion, committed to action and insisting on visibility.