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Long-term Survivors

Everything You Need To Know About HIV Long-Term Survivors Awareness Day

Tez Anderson

#HLTSAD2018 is today. It is a day to spotlight the present day needs and issues of those living longest with HIV and AIDS.

The 2018 theme is HIV It Is (Still) Not Over because health departments, HIV services organizations and the community are focused on “ending AIDS” and “getting to zero.” Goals that are lofty but leave those living longest with HIV feeling isolated and left behind.

Currently, 26 percent of all 1.3 million people living with HIV in the U.S. became positive before 1996, meaning they are longest-term survivors. Many others have been living with HIV for over 15 years.

Too many HLTS are isolated, depressed, living in poverty and coping with AIDS Survivors Syndrome (ASS) which includes depression, anxiety, and a host of other social and mental factors impacting treatment adherence, quality of life, and well-being. Instead of being celebrated as the pioneers they are they are, they are frightened about the prospects aging with HIV, a virus that killed swaths of our loved ones and community.

Before we end AIDS, let’s take care of on the needs and issues of long-term survivors, people who have lived with HIV for 25 and 35-plus years. Our lives were dramatically changed by the epidemic, and it feels like the community has moved on. The meme ‘we lost an entire generation to AIDS’ is wrong. We lost much of a generation, but there are many of us still here, surviving against the odds.

Why June 5?

June 5, 1981, holds a special place in the history of the HIV/AIDS pandemic. It was when the U.S. Centers for Disease Control and Prevention (CDC)reported on the first cases of a rare pneumonia affecting young gay men living in New York and California. It would later be identified as HIV/AIDS.

Today we know that HIV doesn’t discriminate and impacts people of all genders, races, sexual orientations, and socio-economic backgrounds. After experiencing decades of death and multiple causalities, many long-term survivors are socially isolated and lacking services that are culturally aware of the early decades of AIDS.

The Morbidity and Mortality Weekly Report (MMWR ), titled “Pneumocystis pneumonia — Los Angeles,” was published on June 5, 1981 and detailed the cases, which spanned from October 1980 to May 1981. Gottlieb and colleagues detailed the five case studies, noting the commonalities among the cases, such as sexual preference and quick development of this rare form of pneumonia. All five patients were previously healthy individuals who had laboratory-confirmed cytomegalovirus (CMV) infection within five months of PCP diagnosis and candidal mucosal infection, according to the report.


Read an account of the history  and here.

Dr. Robert Gottlieb Statement on AIDS Survivor Syndrome:


HLTSAD is also about prevention. HLTS need to know that people who maintain an undetectable viral load cannot transmit the virus to others. The science is clear: Undetectable=Untransmittable. When you’re undetectable, you both protect your health and prevent new HIV infections.

The goals of HLTSAD 2018 are:

1. HIV and aging are complex and nuanced. HLTS are aging but constitute a distinct cohort different medical and psychological challenges including AIDS Survivor Syndrome, poverty, isolation, and invisibility.
2. In our haste to end AIDS prioritize the 2018 modern-day needs of HIV LTS.
3. Survivors are a valuable part of our communities we need to empower them to become the elders, leaders, and teachers.
4. Celebrating HLTS for enduring an historically unique epidemic and being the pioneers of the AIDS pandemic.
5. Prioritize HLTS culturally-aware healthcare and mental health.
6. Move beyond survival, the goal is aging well with HIV.
7. Honoring the resilience and strength, it took survive multiple causalities and unprocessed grief while planning to die.

About HIV Long-Term Survivors Awareness Day

Started in 2014 by Let’s Kick ASS—AIDS Survivor Syndrome, founder Tez Anderson, it is an offical awareness day on .

Visit, Facebook Page, Twitter.

Download a PDF of the press release here.

Join our private Facebook group page for a safe space to meet, get support and build community. Only open to HIV Long-Term Survivors living with HIV for over 10 years. Please answer the two questions to be considered. I just delete requests that dont take the time to answer the questions. We guarantee safety because the group is moderated to ensure a respectful diaglog.

HIV Long-Term Survivors League is a private, moderated Facebook Group Page. 

About Let’s Kick ASS

Let’s Kick ASS — AIDS Survivor Syndrome is the lead sponsor of HLTSAD. We’re a grassroots movement empowering HIV Long-Term Survivors (HLTS) to thrive.

On the ground and online are the largest organization devoted to addressing the needs, issues, and lives of women and men living longest with HIV. Founded in 2013 to meet an unmet need. We have chapters in Oregon and Palm Springs too.

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Tez Anderson