About HIV Long-Term Survivors Awareness Day

June 5, 2019

Despite what you’ve heard, AIDS is not over. When you have lived with HIV/AIDS for decades, you recall all the hype about the end being right around the next curve. Wish all you want.

But understand the ending the epidemic narrative it has a downside. It means HIV is it no big deal. In the general population think “HIV is no big deal anything”, it’s just one pill a day now” or that there’s already a cure.

The stories of HIV Long-Term Survivors are rich and diverse. Many, maybe most, never imaged aging with HIV. We were planning on dying young. Surviving AIDS for over three decades is different than folks who tested after the late 1990s. Now, the median age of People Living with HIV in the US is 59.

There is an enduring misconception that HIV is a disease of the young, and in particular young gay and bisexual men, according to Mark Brennan-Ing, but it is estimated that in developed countries with well-developed health care systems, almost half of all people living with HIV are 50 or older. In some countries, that number is expected to increase to 70 percent by 2020.

Read the entire article in about Mark Brennan-Ing in APA: https://www.apa.org/news/press/releases/2017/08/older-adults-hiv

June 5, 2019 is HIV Long-Term Survivors Awareness Day (HLTSAD). Launched by Let’s Kick ASS — AIDS Survivor Syndrome in 2014 to celebrate the strength and resilience of People Living with HIV and AIDS for decades.


What is HLTSAD?

HIV Long-Term Survivors Awareness Day (HLTSAD) is an annual AIDS Awareness Day to celebrate and honor people living longest with HIV/AIDS.

It is also an opportunity chance to spotlight the unique role HIV Long-Term Survivors (HLTS) in the AIDS epidemic. And to raise awareness about the challenges and resilience of individuals who were on the frontlines of the early epidemic. Now they are on the first generation aging with HIV. Over half of all people living with HIV are over age 50. Estimates are 25% of people with the virus have had it since 1996 and earlier when HIV was a terminal diagnosis.

It’s our responsibility to ensure these survivors and older adults people have access to physical and mental health care, medication, food, and housing. We must end laws and policies which criminalize people living with HIV, and make sure every young person living with HIV is cared for and valued.

When is HIV Long-Term Survivors Awareness Day?

HLTSAD is an AIDS Awareness Day celebrated every June 5. The first HLTSAD was in 2014. It was started by Tez Anderson, founder of Let’s Kick ASS — AIDS Survivor Syndrome was April 10, 2013.

Why June 5?

June 5 is an important day in the history of HIV/AIDS. 2019 is the 38th anniversary since AIDS arrived unannounced, unnamed and unwelcome in 1981 in a report by the CDC the MMWR. It described five cases of Pneumocystis carinii pneumonia among previously healthy young gay men in Los Angeles. It’s the first official reporting of the AIDS epidemic, according to the CDC and HIV.gov. All five cases were young gay men in Los Angeles and two of them had died.

June 5, 1981 was the beginning of AIDS Awareness before it was identified as AIDS.

June 5, 1981 is cited as beginning of the AIDS pandemic.

Image from MMRW June 5, 1981
Taken in the CDC Museum

Why is HLTSAD Day important?

Because people do not know that a quarter of people living with HIV have been since 1996 or earlier. Some back as far as the 1970s.

The 2019 theme is Empowered to Thrive. We aim to catalyze a national conversation on optimizing the quality of life for women and men HIV Long-Term Survivors. It is time to prioritize and address HIV-care focused on wellbeing and healthy aging with HIV. We do that by spotlighting unique needs and issues confronting survivors today.

Other important reasons to honor and celebrate HIV long-term survivors.

  • Over 50% of the 1.2 million people living with HIV in the United States are over the age of 50.
  • More than 1 in 4 have been living with HIV for over 25 years.
  • 25% of people have lived with HIV since 1996 or earlier. All have over half of their lives with HIV/AIDS.
  • For the 1980s and most of the 1990s having HIV was considered a death sentence.
  • Long-Term Survivors are the generation that survived AIDS.
  • They are visible symbols of resilience, strength, and perseverance.
    Despite being an overlooked population facing ageism, older adults with HIV are a valuable untapped resource for the community.
  • They earned their badges in empathy, care taking, and heroism.
  • In 1996 better medications arrived and changed HIV to “chronic manageable illness.” But that diminishes the complexity of the reality.
  • Long-Term Survivors take an average of nine different medications a day. Most take more — as many as 15 medications due to aging with HIV. Polypharmacy is a dangerous threat and challenging to manage.
    Nearly half are living with a disability.
  • Aging is a privilege, and surviving AIDS is complicated.
  • If you think AIDS is “no big deal” or is “nearly over” you are not paying attention.
  • As we end the epidemic lets also ensure a better quality of life for people living longest with HIV.
  • AIDS Survivors lived through a holocaust and are largely invisible in the world.

THEY WILL SPEAK UP. LISTEN.

JUNE 5 is HIV Long-Term Survivors Awareness Day, a time to celebrate survivors as the heroes they are because they deserve to be held up as the heroes they are.

Where will HIV Long-Term Survivors Awareness Day be celebrated?

HIV Long-Term Survivors Awareness Day will be celebrated all across the country and in Europe. There will be events hosted by various organizations and individuals in colleges, community centers, and coffee shops.

Here are some events we know about.

Let’s Kick ASS Oregon June 1 Event

https://www.eventbrite.com/e/were-still-here-a-celebration-of-aging-positively-with-hiv-tickets-60626398189?aff=ebdshpsearchautocomplete
https://agingcoalition.org/national-hiv-long-term-survivors-awareness-day/

Advanced registration is required. www.NotOverYet.eventbrite.com Join us for a panel discussion about what it means to be a long-term survivor of HIV/AIDS. The panel will be facilitated by Chris Lacharite of the Long Term Survivor and include Mental Health, Case Management, The PBC HIV Care Council and more. This FREE event includes dinner.

Other resources

A Call To Not Be Forgotten AVERT

https://www.lkaps.org/

Let’s Kick ASS Palm Springs https://lkaps.org

LKA MANUAL: https://www.lkaps.org/the-lka-manual

Let’s Kick ASS Oregon: https://letskickass.hiv

ACRIA Center on HIV & Aging: https://www.acria.org

America’s Pharmaceutical Companies: https://innovation.org/

HIV & Aging Research Project (HARP): https://www.harp-ps.org

Justice In Aging: http://www.justiceinaging.org

National Resource Center on LGBT AGING: https://www.lgbtagingcenter.org/resources/index.cfm?s=12

The Well Project: http://www.thewellproject.org/hiv-information/aging-and-hiv

The Kick ASS Manual

Click to download PDF: https://docs.wixstatic.com/ugd/25c721_380b0b095c6a40e6a2a98a2dfe70d230.pdf

The Kick ASS Manual was originally conceived as something useful to front-line providers. The project has shifted in composition, away from journal-type articles and towards personal stories, always with the goal of informing, increasing the body of knowledge around HIV and thereby improving quality of life for people living with HIV. Most of the pieces are short. We want them to be approachable and useful to a diverse audience, ranging from professionals and caregivers dealing with people who might have HIV, to people living with HIV, to people who don’t have HIV but want to learn more. The Manual can answer questions directly, and suggest sources for further information. It puts a face to aging with HIV, raises awareness around some of the issues that can trouble our lives, and provides ideas about how to improve them.