You Kick ASS! Thanks for Making #HLTSAD2018 Astonishing
A Ripple Becomes a Mavericks-Style Wave
2018 HIV Long-Term Survivors Awareness Day was the largest ever. There were more events around the globe and unprecedented media coverage. The visibility and voices of HIV Long-Term Survivors (HLTS) have reached an all-time high. Thank you.
It is a great beginning. There’s much work to do. We must demand that the needs, issues, and lives of survivors not continue to be deprioritized in this new era of HIV. We lived the first decades of the AIDS epidemic. We represent the vanguard of the current pandemic. We’ve always been on the frontlines of HIV and AIDS. We are now Aging with HIV, — something most of never imagined.
Below you’ll find some of the amazing press coverage and events (that I know of) that happen on or around HIV Long-Term Survivors Awareness Day June, 5, 2018.
The theme for #HLTSAD2018 is It Is (Still) Not Over because it seems the HIV care community is so focused on Ending AIDS and Getting to Zero they’re overlooking the those of us living longest with HIV and AIDS.
THIS WILLFUL INSTITUTIONAL INVISIBILITY IS UNACCEPTABLE. It’s up to us to unify, speak out and demand better.
The statistics clearly state the need to engage and serve HIV Long-Term Survivors (HLTS). Pre-HAART survivors (defined as living with the virus from 1996 and earlier) make up approximately 25% of all people living with HIV. HAART stands for highly active antiretroviral therapy. This does not include all those living with HIV for 15 years and longer after HAART medication changed the landscape.
Five years ago, in my role as Founder and Executive Director of Let’s Kick ASS — AIDS Survivor Syndrome, I decided we needed A Day to Call Our Own. Thus, HIV Long-Term Survivors Awareness Day was born, because there was no Awareness Day for those living longest with HIV and AIDS.
I thought June 5 would be perfect. It is the anniversary of the “beginning of the AIDS pandemic” before it was known as HIV or AIDS. Then it was called “the Gay Cancer”. Of course we know HIV affects far more than gay men. The community of HLTS is vast and diverse. Women, men and people of all races, gender identities and sexual orientations. HIV does not discriminate. AIDS is also far from over.
Our first event was an day-long AIDS Survivors Summit at the San Francisco LGBT Center. Over 200 people attended, most came early and stay into the night!
Here’s a photo from that day in 2014
Then it was called National HIV/AIDS Long-Term Survivors Awareness Day. I shortened it after that event to HIV Long-Term Survivors Awareness Day so it could be international.
If you are an HLTS please join our amazing online community — The HIV Long-Term Survivors League. It is a private, moderated safe space for HLTS to engage in civilized conversations about things that matters to those of us living longest with HIV. It’s space to share thoughts, mobilize, empower each other through peer-support and creating a judgement-free community for others who understand what it means to survive an historically unique epidemic. I moderate the group and am determined to make it a protected, safe space where we can talk freely and respectfully.
Here is the #HLSTAD2018 Press
These Gay Men Have Spent 30 Years Learning How To Be Long-Term HIV Survivors Sean McKenna, 55, was diagnosed with HIV in 1992. He takes 22 pills a day and deals with diarrhea, joint pain and HPV…bit.ly
Which prompted Chelsea Clinton to Tweet about HIV Long-Term Survivors. She is a class act!
Everything You Need To Know About HIV Long-Term Survivors Awareness Day The 2018 theme is HIV It Is (Still) Not Over because health departments, HIV services organizations and the community…www.hivplusmag.com
Tez Anderson On The Growing Awareness Of HIV Long-Term Survivors And AIDS Survivor Syndrome The award-winning HIV Long-Term Survivor activist-writer-speaker has been living with HIV since 1983. He says the…www.huffingtonpost.com
GMHC Launches the Hub for Long-Term Survivors
Due to the tenacity of survivor/activist Sean McKenna restarting the Buddy Program it led to to GMHC stepping up HIV Long-Term Survivors GMHC has stepped up with the new Hub for Long-Term Survivors.
The Hub at GMHC is a welcoming and supportive environment for our Long-Term Survivor community. If you’re a Long-Term Survivor, it’s a central place to connect — or reconnect — for services, resources, workshops, and events to learn and socialize — and to know that you’re cared about. Gregg Bruckno is the GMHC’s Long-Term Survivor Specialist.
Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues The New York Times had a spotty record of covering the AIDS epidemic in the early 1980s — and gay culture in general…www.nytimes.com
HIV Long Term Survivors Day: HIV 360° Community Service Project | Human Rights Campaign June 5 marks HIV Long Term Survivors Day. The first reported cases of the AIDS epidemic were on June 5, 1981, when the…www.hrc.org
AIDS Survivor Syndrome and Let’s Kick ASS are sighted in this newly released study.
By Judith G. Rabkin, New York State Psychiatric Institute, New York, NY: Martin C. McElhiney, Department of Psychiatry, Columbia University, New York, NY; Mark Harrington, and Tim Horn with Treatment Action Group, New York, NY, USA
John-Manuel Andriote deserves his own section here. He is one the brightest writers we have he has his own column on Psychology Today read him regularly. It is worth your time.
These are two of his recent articles which are must-reads.
Long-term HIV survivors show how to live with meaning, purpose, and wisdom.
Published Psychology Today on June 4, 20154
What does it feel like to hear your community talk about how we supposedly “lost an entire generation” when you are standing right there, living proof that we did not?
“The meme ‘We lost an entire generation to AIDS’ is wrong,” said San Francisco resident Tez Anderson, living with HIV since 1983. “We lost much of a generation but there are many of us still here, surviving against the odds.”
When Anderson in 2013 called for a meeting of the city’s long-term HIV survivors, 250 showed up. In response, he launched an organization and grassroots movement he calls Let’s Kick ASS — AIDS Survivor Syndrome.The group is the lead sponsor of HIV Long-Term Survivors Awareness Day, observed on June 5 to mark the anniversary of the first reports on June 5, 1981 of what became known as AIDS. This year’s theme is “HIV: It Is (Still) Not Over.”
Michael Gottlieb, M.D., whose gay male AIDS patients in Los Angeles were among those first reported in 1981, says of Anderson and other long-term HIV survivors
“If you had HIV, you couldn’t go through a time as traumatic as the eighties and nineties without major life-changing ramifications. Depression, isolation, economic hardship, careers put aside — and a feeling that society had no idea what you had been through, and didn’t much care. Going forward it was dismissive of your relevance.”
Let’s Kick ASS not only affirms the relevance of long-term HIV survivors, but esteems them as exemplars of resilience, pioneers and community elders with important stories to share, history to pass along.
As with our personal stories, the stories we tell of our own, or our community’s, experience with HIV-AIDS can either uplift, or undermine, us, depending on how we frame them, the words and language we use in telling them. “How we view it is how we get through it,” said Anderson. Too often, he said, we focus on “all the ways we fell down” without telling the part about how we got back up again.
“I would like to get people to tell their stories of survival,” Anderson told me in an interview in San Francisco for my book Stonewall Strong, “lessons we’ve learned as elders of our community.” He pointed out that one of the most important lessons was, “Yes, it was awful but it also forged our community. We fought with a community spirit we had not seen since Stonewall.”
Whether we see victory or victimization depends on how we tell the story. “Some of us,” said Anderson, “seem to be stuck in how tragic and awful it was, and all they lost — instead of looking at the lessons. What were the nuggets of gold we got? I feel like I got so many.”
Read the rest of the entire article here>>
These are truly words to live by also written by John
John-Manuel Andriote is a longtime health and medical journalist. His most recent book is Stonewall Strong: Gay Men’s Heroic Fight for Resilience, Good Health, and a Strong Community. Andriote writes the “Stonewall Strong” blog on resilience for Psychology Today. Visit Andriote’s website at jmandriote.com. Connect with him on Facebook and Twitter.
There is new study focusing on HIV and Aging
Here’s something I wrote for Time Magazine for World AIDS Day 2017
What It’s Like to Survive HIV for More Than 30 Years Time magazine by Tez Anderson
Watch the video here. (Sorry if the sound quality is not great.)
My host was Steven Headington activist and community leader in Oregon. Steve’s focus is on HIV/AIDS Long-Term Survivors in Oregon. He’s working with the State of Oregon and local agencies to raise awareness in order to create new policies focusing on all Long-Term Survivors. Steven is also the President and Co-Founder of Let’s Kick ASS — Oregon
Oregon and the Multnomah County Board of Commissioners proclaim the week of June 5 as the Annual HIV/AIDS Long-Term Survivors Awareness Week in Multnomah County, Oregon.
Yours in resilience,
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HLTSAD is June 5