HIV Long-Term Survivors Awareness Day is 5 June 2019

Empowered to Thrive is this year’s theme.

Tez Anderson
Jun 5 · 7 min read

June 5, 2019, is HIV Long-Term Survivors Awareness Day (HLTSAD). Empowered to Thrive is this year’s theme.

The theme is Empowered to Thrive (#empowered2thrive) because we deserve to flourish. It’s time to focus on living well with HIV. We aim to catalyze a national conversation around optimizing the quality of life for women and men HIV Long-Term Survivors. We want prioritize HIV-care focused on quality of life and wellbeing.

Unlike other awareness days, Empowered to Thrive, is not just the theme for a one-day affair. It is a call to action that will be our focus and goal until we have seen change happen.

PRIORITIES

We’ve come too far to settle to being stepped over in the race to “end the epidemic.”

  1. Undetectable = Untransmittable. We want to celebrate and affirm the groundbreaking fact that viral suppress is essential to stopping the spread of the virus and to living healthier longer.
  2. Viral suppression is not an end point. We want to go beyond undetectable and focus on improving our daily quality of life and healthy aging with HIV.

Because the HIV care and advocacy are about “ending the epidemic” and “getting to zero” it, people think AIDS is over. We know better. Of course, stopping the transmission of HIV by achieving and maintaining viral suppression is vital. It also contributes to our longevity. All the aims of the UNAIDS 90–90–90 targets are worthwhile. But it feels like we’ve set the bar too low.

United Nations Programme on HIV/AIDS (UNAIDS) established the 90–90–90 goals. They first established 2020. Now it is 2030 as the date to achieve — 90% of all people living with HIV will know their HIV status, 90% of people diagnosed receive antiretroviral drugs. The third 90% means becoming and remaining undetectable. Achieving an undetectable viral load means we can’t pass HIV on.

Well here it is 2019 and we are not there yet. They are now talking about 2030. The current White House Administration claims they want to “end the epidemic by 2030. (But they are doing things to uncut this rhetoric but that is for another article.)

We think the 90–90–90 goals are not ambitious enough and as they have failed perhaps a Fourth 90 is needed. The 4th 90 is a focused on healthy aging with HIV and improving overall quality of life for people living with HIV/AIDS.

HLTS are living with complications from having HIV for decades. Most of us did not plan on aging with HIV. Once again we are on a frontier. We were there at the beginning of the AIDS pandemic and we’re still here in this new era of HIV.

The meme “We lost an entire generation to AIDS” is wrong. We lost much of a generation but there are many still here surviving against the odds.

In fact, 25% percent of all people living with HIV have been positive since 1996 and earlier. Many have lived with HIV/AIDS for nearly 40 years. Then there are Older Adults with HIV who make up over half of PLWHA are over age 50. HIV Long-Term Survivors are the ones who never imaged Aging with HIV. Those living longest with HIV have unique health and social needs which are too often overlooked. The generation on the frontlines of the early AIDS pandemic are now on the frontier of aging with HIV.

Forged by fire. United in compassion. Women and men living with HIV for decades have proven themselves resilient in the face of immeasurable odds. That makes them heroes. There should be reverence and respect for the lives’ survivors have lived. The mass causalities, stigma and governmental indifference took an enormous toll on the tribe of survivors. Yet, today, they are thought of as the Forgotten Generation or relics from a bye-gone era. It is time to end that. Ageism is not acceptable.

Aging is a privilege too many of our loved ones did not get. Aging with HIV is also hard.

We need attention, services, and programs sensitive to the lives we’ve led. Oh, and do not plan programs and services without us. The Meaningful Involvement of People Living with HIV (and aging with the virus) mean we need to have a seat at the table during the planning stage. We know our histories and what we need, what we are missing. Nothing about us without us is not just words it means exactly what it says. Organizations that we helped to found will not be allowed to turn their backs on Older Adults with HIV and HIV Long-Term Survivors.

Survivors are an untapped resource and will no longer be silent. We will show up at AIDS Service Organizations and ask what they are doing to meet the needs of an aging population. If the answer is “nothing”, we’ll do everything we can to change it. Times Up in more ways than one.

HLTSAD was launched by Let’s Kick ASS — AIDS Survivor Syndrome, founder Tez Anderson, in 2014 to spotlight the issues facing HLTS and find ways to address them. We also highlight the strength and resilience of People Living with HIV and AIDS for decades.

Why June 5?

June 5, 1981, is an important day in the history of HIV/AIDS. 38 years ago AIDS arrived unannounced, unnamed and unwelcome in 1981 in a report by the CDC the MMWR. It described five cases of Pneumocystis 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.


Resources

A few useful and excellent resources informing, increasing the body of knowledge around HIV and thereby improving quality of life for people living with HIV.

The Kick ASS Manual

Let’s Kick ASS Palm Springs Reference on Aging with HIV and AIDS Survivor Survivor Syndrome

Click this link to download>> http://bit.ly/KickASSManual

Table of contents in the Kick ASS Manual

Behavioral Health

  • Therapy for Long-term Survivors Living with HIV
  • Isolation and Sensing Happiness
  • Facing Addiction

Diverse Voices

  • An Immigrant Speaks
  • What does U=U mean to an HIV long-term survivor?
  • Defining Long-Term Survivor
  • Shame & Stigma
  • I didn’t want to know
  • You’re not going to die.

Medical

  • Inflammation
  • Letter to a Physician
  • Cognitive & Co-morbid Challenges of HIV
  • Food
  • Housing

Resiliencies

  • HIV and Family
  • Calls for Research
  • Timothy Ray Brown’s Tenth “Cure Birthday”
  • Growing Need to Revolutionize Clinical Research Enrollment Criteria for Aging People Living With HIV

We’re tired of being marginalized and overlooked not embraced as exemplars of strength and resilience.

We survived against the odds. We witnessed the deaths of far too of our many loved ones and communities. We were the caretakers. We were given a death sentence and lived to tell.

A short documentary by NBC TODAY Show on World AIDS Day 2018

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

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

Yours in resilience,

Tez Anderson, Founder, Let’s Kick ASS

Tez online: Facebook TezAndersonLKA | Twitter @TezAnderson

LinkedIn: https://www.linkedin.com/in/tezanderson

LetsKickASS.hiv

Facebook AIDSSurvivorSyndrome | Twitter @LetsKickASS_hiv | Instagram letskickass

HIV Long-Term Survivors Awareness Day is June 5

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HLTSAD

HIV Long-Term Survivors Awarness Day

Tez Anderson

Written by

HIV Long-Term Survivor, Writer, Speaker, HIV Activist, & Founder of Lets Kick ASS grassroots movement empowering @HIVsurvivors. @TezAnderson & @LetsKickASS_hiv

HLTSAD

HLTSAD

HIV Long-Term Survivors Awarness Day