At The 21st International AIDS Conference in Durban, South Africa.
HIV Long-Term Survivors Are Suffering & Do Not Know Why. We know.
Our abstract entitled, HIV Long-Term Survivors: Kicking AIDS Survivor Syndrome was accepted! We are presenting on Tuesday, 19 July 2016.
Let’s Kick ASS is the organization established to raise awareness about AIDS Survivor Syndrome and to do something to about it .
We an all-volunteer grassroots organization based in San Francisco, with chapters in Palm Springs, Portland, Austin and several other cities are forming chapters.
Our message of overcoming AIDS Survivor Syndrome has reached tens of thousands of people. Healing is possible. Our online reach is just over 38,000 around HIV Long-Term Survivors Awareness Day on June 5.
Our budget is low and goals are high. We need your support to cover the costs of travel and the conference.
26 percent of all people living with HIV are Long-Term Survivors.Meaning, we acquired HIV before 1995, when there were no treatments. Hundreds of thousands more of us have been living with the virus for over 15 years.
We now find ourselves Aging with HIV, something that didn’t seem possible 25 years ago. Worldwide over 4.2 Million People Living With HIV Are Over Age 50. Over half of all people living with HIV in the United States are 50+, by 2020 it will be 70 percent.
Currently HIV Long-Term Survivors (HLTS) face a myriad of psychosocial ramifications from surviving the plague. It is knowns as AIDS Survivor Syndrome (ASS) describes people affected by a variant of Complex Traumatic Stress Disorder. Distress that impacts functional health-related quality of life (HRQoL) issues.
It is still largely invisible so Durban is a once in a lifetime opportunity to bring this conversation to an global audience.
South Africa has the biggest and most high profile HIV epidemic in the world, with an estimated 6.3 million people living with HIV in 2013.
A Personal Story About Why it Matters
A long-time survivor friend in London says it very well in a recent email. I’m excerpting part of his message:
Another man down.
I received a text from a very close friend about his ex-partner and house-mate, saying, “He’s overdosed; the paramedics could not resuscitate him”. This man was a long-term survivor with HIV (about 30 years), a physician, and much-loved by many friends who had seen him struggle with his addictions. He himself used to talk about what comes with surviving HIV as a main problem for him (he’d had pulmonary KS and was on his last legs when he got the ‘new’ meds in ‘96), all the people who had died whom he’d cared for, all he had tried to do (and had, very successfully) for people with HIV.
Two things I want to be heard about this:
1) he was a good man who suffered what I’m seeing increasingly as a complex traumatic stress-disorder in long-term survivors;
2) his HIV-services barely lifted a finger to help him when he asked for help, because complex emotional disorders aren’t on their checklist of secondary illnesses from HIV; his GP was useless, if not downright dangerous; and his psychiatrist just dished out tick-list pills and didn’t do adequate follow-up.
One question I want to be answered: when will we say that that is not good enough and do something about it? I myself am tired of this, of unnecessarily burying friends STILL, of going along with the fiction that everything is alright because we have antiretroviral meds now, of having to try and get most physicians to sit up and hear that that model is fine for them but it is killing people, and to stop getting in the way of us trying to get well — and stay well. How many more good men and women must go down”
Please give whatever you can afford to help Let’s Kick ASS, a small non-profit with a loud voice make the world a safer place for those living longest with HIV.
Our HIV Long-Term Survivors Declaration: A Vision For Our Future has been downloaded or read online over 25,000 times. (Read it if you haven’t!)
The world is staring to listen. Help us raise our voices by giving whatever you can. And share this with your friends and networks.
To learn more us please visit: LetsKickASS.org
You can read our latest writing at: www.LetsKickASS.hiv Follow us on Facebook: https://www.facebook.com/AIDSSurvivorSyndrome/
Twitter: @LetsKickASS_org & @HIVSurvivorsinstagram.com/letskickass
You can follow my journey in South Africa using the hashtag #TezAIDS2016.
HIV Long-Term Survivors Awareness Day 2016 was a big success. Our Facebook stats show over 34,171 people reached in a week!
That is phenomenal.
HLTSAD is different from other awareness days.
It is not one day and forgotten.
HLTSAD is about setting a theme… stating our intentions and creating action.
“Moving Forward Together” is the 2016 theme because we are stronger together.
Collectively, we have more in common than differences.
We can’t fall prey to divisiveness and completion.
Building capacity means working together.
Creating powerful alliances wherever we can.
We have 2 main goals this year.
Continue raising visibility of & awareness about HIV Long-Term Survivors.
Put HIV & Aging on the front burner.
Because older adults living with HIV are the majority.
We need to demand that agencies, the government & providers understand the needs and issues of an aging population.
Let’s Kick ASS has received several emails about starting new chapters in other cities, we are rapidly growing.
We want to empower long-term survivors to become the champions, teachers, leaders and elders of our tribe.
Women, men and transgender of every orientation, race, religion & gender.
Let’s Kick ASS created & is the lead sponsor of HIV Long-Term Survivors Awareness Day to spotlight those living longest with HIV.
For us every day is HLTSAD.
Visit LetsKickASS.org and our Medium publication at LetsKickASS.hiv to learn more.
The awareness day site is HLTSAD.org.
Please follow us on Twitter:
I love all of you. Thanks for making my life amazing!
Tez Anderson, Founder, Let’s Kick ASS—AIDS Survivor Syndrome
Building a Focus on Healthy Aging for Older Adults Living With HIV: A Call to Action
I recently had the pleasure of participating in a roundtable discussion with fellow HIV advocates and experts from around the country to discuss the unique needs of the aging population with HIV and what we can do to enhance and initiate efforts to promote healthy aging for those living with HIV.
The report details that discussion and provides key themes and important next steps to advance actions to improve healthy aging for people with HIV.
I’m thrilled to share this with all you. You can download and share it: http://bit.ly/FocusHealthyAgingHIV
Key themes included:
- Advancing the conversation beyond survivorship
- Re-engaging older adults with HIV in efforts to improve their long-term health and minimize the complications of multi-morbidity
- Increasing education among HCPs about multi-morbidity management in the older population with HIV
It’s crucial that we collectively take steps to start a conversation about how to improve healthy aging for older people with HIV. The report, entitled “Building a Focus on Healthy Aging for Older Adults Living With HIV: A Call to Action,” is attached for your consideration, and we hope that you will begin taking action by sharing this report among colleagues, fellow advocates, HCPs, and anyone else who may be interested.
More than half of the 1.2 million people living with HIV in the United States are over the age of 50, according to the Centers for Disease Control and Prevention. It is estimated that by 2020, 70 percent of HIV patients will be 50 or older. Advances in HIV treatment have turned what was once considered a death sentence into a manageable chronic disease.
Now that people with HIV are living longer, they are experiencing the impact of age-associated comorbidities and face a host of psychosocial concerns that must be addressed.
Given the unique needs of this population, there is a need for increased focus and purposeful action to develop a plan that will allow people with HIV and their health care providers to collectively improve the way that older adults with HIV can expect to age.
This report stems from a discussion among national thought leaders in aging and HIV, convened by Theratechnologies on March 2, 2016, focused on identifying key themes and important next steps to advance actions to improve healthy aging for people with HIV.
Click here to download the full report Building a Focus on Healthy Aging for Older Adults Living With HIV: A Call to Action here: http://bit.ly/FocusHealthyAgingHIV
Tez Anderson (@TezAnderson) is a writer, HIV Long-Term Survivor and the founder of Let’s Kick ASS a grassroots group devoted to optimizing survivors lives. He is the originator of HIV Long-Term Survivors Awareness Day every June 5. Tez Anderson lives in San Francisco with his husband and Labradoodle puppy, Riley, where Lets Kick ASS is headquartered. There are chapters in Portland, Palm Springs and Austin.
We have a new Medium Publication at LetsKickASS.HIV
Al Jazeera America has an amazing new piece about the current day realities of long-term survivors. Watch Stream here http://stream.aljazeera.com/story/201603151323-0025172
Please watch it and leave comments on our Facebook Page https://www.facebook.com/AIDSSurvivorSyndrome/
We are working hard on our revamp of HIV Long-Term Survivors Awareness Day. We’ve shortened our title a bit. The 2016 theme is “Moving Forward Together”. We have a new site that’s still being worked on but it is NHLTSAD.org. It is 35 years since that fateful announcement changed the course of our lives. NHLTSAD is about coming to get together and setting our own agenda for how we want to age. Yes there are obstacles but let’s find solutions together. Let’s work together. #HIVLongTermSurvivors #MovingForwardTogether and #HIVresilient are our hashtags for the day. As is #NHLTSAD2016.
It is coming up in June so start making your event plans now.
If you have not seen the San Francisco Chronicle feature Last Men Standing by Erin Alday please read that too. We are starting to get mainstream press let’s make this the start of a trend. People need to know our stories, our struggles (like living in poverty and coping with complicated post traumatic stress or AIDS Survivor Syndrome. The story profiles 8 amazing long-term survivors The Men and for the first time ever the Chronicle has produced a film to accompany the feature.
Here is a graphic to tease you. This is not my skill set but it gets the information across. Back to work on several new projects for long-term survivors more here later.