Let’s Kick ASS is a grassroots movement of long-term survivors, positive and negative, honoring the unique and profound experience of living through the AIDS epidemic. We’re dedicated to reclaiming our lives, ending isolation, and envisioning a future we never dreamed of.

Twenty-Plus Positive Years: An AIDS Survivor Dialogue in Melbourne

BY MATT SHARP

An afternoon session, titled “Twenty Plus Positive Dialogues: People Who Have Lived with HIV for 20 Years or More,” on July 22 at the International AIDS Conference Global Village featured long-term AIDS survivors and high-level U.S. and global AIDS policymakers, and ended up less a debate and more about stories told.
Clearly a first foray into the larger global dialogue about long-term survivors, it was good to see some recognition at a major AIDS meeting—despite the fact that it was not well highlighted and was essentially off the beaten conference track. Perhaps most telling for long-term survivors at the conference was that the director of UNAIDS, Michel Sidibé, and the executive director of the Global Fund to Fight AIDS, Tuberculosis and Malaria, Mark Dybul, were both scheduled to appear but sent substitutes in their places.
Suzette Moses-Burton, executive director of the Global Network of People Living with HIV, was the moderator and firebrand of the panel. After the trauma of being told upon diagnosis that she only had two years to live, she is now a long-term survivor and global AIDS activist and leader. Politely yet emotionally challenging policy panelists, she told a story of the burnout many veteran AIDS activists have expressed. She spoke of being tired of continuously having to demand a place at the table, being weary of stigma and discrimination, and of having to justify her presence as a woman of color living with HIV. She pleaded that the policymakers must end their rhetoric and help us all to speak for those who do not have the voice to effect change.
Other long-term survivor panelists included John Rock, a 70-year-old gay man from Australia; Stephen Watiti, a 61-year-old Ugandan medical doctor; and L. Mbulo, a Zambian 23-year-old mother born with HIV. Each told dramatic stories from their past, including when they first found out they were HIV positive, their life struggles, and their somewhat incredible survival. They spoke of their will as long-term survivors to become advocates for their families, help people with HIV lead healthy and productive lives today, and work in communities to prevent new infections. They have survived through tremendous odds with compounding medical issues, community resistance, and lack of services and care. They all pleaded for recognition and action by local governments, communities, and medical institutions.
The global and U.S. policymakers on the panel—Mbulawa Mugabe from UNAIDS, Marjike Wijnroks from the Global Fund, and U.S. Global AIDS Coordinator Deborah Birx—all said they needed to do more. But compared to the survivor stories, their responses sounded like rhetoric. Birx stated that policymakers needed to hear from advocates, as has happened in the past. Her concern was that advocates today have become too quiet.
At this panel it became clear that we are truly in a new era of the HIV epidemic. After 33 years, many AIDS survivors are aging, and globally a new set of priorities needs to be put in place to take care of their medical, psychosocial, and practical needs. The life experiences of the long-term survivors on the panel present key “lessons learned” for HIV treatment, care, and services: start antiretroviral therapy early, help people living with HIV/AIDS maintain employment, ensure access to more effective and tolerable treatment regimens, and respond quickly to evidence of drug resistance to prevent disease progression.
Another lesson learned? Long-term survivors need to demand a place at the table, raising their voices in order to be heard both locally and internationally. The issues are complex and broad, but as more people age thanks to effective antiretroviral therapy, there must be a strategy in place before the issue becomes a crisis.

Matt Sharp is a Person with AIDS, longtime HIV treatment advocate, and writer. He is a co-founder of Let’s Kick ASS, a grassroots organization dedicated to honoring the experiences of long-term survivors of the HIV/AIDS epidemic and advocating for their health and well-being today.

reprinted from BETA


Survivors Stories in One Day Day On Earth

Just in.

Our video for One Day on Earth is ready and it was worth the wait – please go to this link: http://onedayinsf.org/map/video/17708
The story of survivors made it into this mainstream social media campaign it is amazing.
Thank you to our interviewees and the filmmakers:

Jörg Fockele (Director/Producer), Marc Smolowitz (Producer), Amir Jaffer (First Camera/DP), Timothy Kulikowski (Second Camera/Still Photographer), Kelly Dessoye (Editor), Stuart Goldstein (PA)

Watch it on full screen. Click the expand button.


We’re Still Here by Matt Sharp

Matt Sharp wrote this amazing op-ed for the Bay Area Reporter.

We’re Still Here

June 5 marks the first National HIV/AIDS Long-Term Survivor Awareness Day. The day is one that has historical significance in San Francisco, but also globally, because it was the same day in 1981 that the Centers for Disease Control and Prevention announced the very first cases of a new and devastating disease we now know as AIDS.

As a long-term survivor, living with AIDS now for over 26 years, there is not a day that goes by that I do not remember those dark years, all the desperation and tragic loss. For the past 33 years it has been a long road for us survivors, both HIV-positive and -negative, where there is much trauma that has not been addressed for a variety of reasons. We believe this has led to a series of psychological symptoms we call AIDS survivor syndrome, a.k.a. ASS, such as depression, anxiety, post-traumatic stress, and even suicide.

Last year a few us met in local coffee shops to discuss this AIDS survival paradox: the fact that while there are many of us who have survived AIDS to grow into our senior years, there is a great deal of suffering going on. We recognized the stark reality that not only was not much known about this phenomenon, but also nothing was being done. We were left wondering if so-called AIDS Inc. had dropped the ball focusing now on an “AIDS-free generation” instead of the forgotten warriors, now in great need of help. We feared the Denver Principles declaration from the early years of the epidemic had gathered dust on the top shelves in many of our AIDS organizations. Whatever the reasons, we knew something was broken and needed to be fixed. As usual we stepped in to take care of our own.

In September last year Let’s Kick ASS held its first town hall meeting at the LGBT Community Center, and the second I walked into the Rainbow Room on the second floor it felt like class reunion. There was an electrifying energy in the room as the meeting commenced that reminded me of an early ACT UP meeting, minus the anger. There was joy in seeing people we hadn’t seen in years, perhaps because of isolation or the vacancy of an AIDS community. But as the evening went on that community appeared to be born again and everyone seemed energized to address the variety of AIDS long-term survivor needs we knew were not being met. We heard that survivors needed to open up and talk about the dark days, but more importantly to begin to plan and strategize about reclaiming our lives, ending the isolation and planning for our future. Since that night a coordinating committee formed, developed a mission statement, continued with themed town hall meetings, and held a variety of opportunities for long-term survivors to meet and be together.

Social media interest in Let’s Kick ASS and long-term survival issues started to explode. Passionate emails and comments were flooding in from all over the world recognizing the very same survival issues we had begun to see in San Francisco. Tez Anderson, a co-founder of LKA, was passionate about the creation of “a day to call our own” that would have the impact of focusing around the fact that dammit, we’re still here! June 5 was selected as the day that would become our own National HIV/AIDS Long-Term Survival Awareness Day.

In San Francisco, Let’s Kick ASS is sponsoring this day of activities tailored to honor the experience and losses of long-term survivors and work toward a productive future. The day will start at 11 a.m. with a heart circle meditation and tree planting at the National AIDS Memorial Grove followed by an AIDS Survivor Summit at the LGBT center from 1 to 9 p.m. The summit will involve a series of three talk show format town hall forums that will address challenges and solutions, the importance of meaning and purpose in the lives of long-term survivors, and mobilization and empowerment, the key to our future. Several community leaders are expected to lead and participate in discussions with the audience. In conjunction with the summit, the Expo will involve several local AIDS organizations that now provide services to long-term survivors at staffed information tables. And finally, how can any San Francisco event be complete without a party? A pre-pride reception for long-term survivors and anyone that wants to attend will be held from 7:30 to 9 p.m. All events are free and anyone can join in any or all of the day’s activities.

Other jurisdictions across the country are planning separate events tailored to their own communities to honor survivors.

Hoping that another national “Day” event won’t be forgotten after it’s all over, Let’s Kick ASS will continue mobilizing and strategizing around long-term survivors issues. A continuing San Francisco coordinating team will be busy planning more events including town hall forums, social events, and retreats. Importantly, an advocacy agenda that begins with re-awakened principles will seek to address the issues of AIDS survivors today.

Let’s Kick ASS is grassroots. We don’t consider our work to be service provision, but mobilization and connection. We need energy and we need resources to continue on. Any long-term AIDS survivor, including HIV-negative survivors, are invited to attend activities on June 5, but also in any future planning that will help to bring survivors out of isolation, fear, and distress, living into a future we never dreamed possible.

For more information about the awareness day and Let’s Kick ASS visit http://www.LetsKickASS.org or join our Facebook page:https://www.facebook.com/AIDSSurvivorSyndrome.

 #WERESTILLHERE #LONGTERMSURVIVORS

Matt Sharp is a long-term AIDS survivor, living with AIDS 26 years, and co-founder of Let’s Kick ASS. He is also a nationally known and respected AIDS treatment activist, now focusing on research for a cure.



Published in Poz

Tez got published on Poz.com. You can start it here

A Day To Call Our Own

It has been 33 years since the U.S. Centers for Disease Control and Prevention (CDC) first released a report about a mystery illness that would come to be known as HIV. For the next 20 years, AIDS would hit the gay male community unrelentingly hard. As a community, we would care for and bury hundreds of thousands of our loved ones. Without effective treatments to offer hope, thousands of us became caretakers while preparing to die ourselves. Even for those who remained uninfected, it was a traumatizing time that required extraordinary resilience and ingenuity to survive.

Read the rest on: http://www.poz.com/articles/tez_anderson_2676_25646.shtml

 


Let’s Kick ASS New Video PSA

Let’s Kick ASS PSA featuring National HIV/AIDS Long-Term Survivors Awareness Day June 5 from Let’s Kick (ASS) on Vimeo.

Here is Let’s Kick ASS new PSA. Directed by award-winning filmmaker and TV producer @Jörg Fockele. Produced by HIV Story Project, Jörg and Marc Smolowitz. Shot in the National AIDS Memorial Grove it features Bonnie Parker De Angelis, Vince Crisostomo Michael Guillen, Michael Siever, Michael Hampton and TezAnderson.

Join us for AIDS Survivors Summit on June 5 see our website for details and tickets. AIDSSurvivorsSummit.org

To learn more visit: LetsKickASS.org


A Day to Call Our Own

It has been 33 years since the CDC first released a report about the mystery illness that would come to be known as HIV. For the next twenty years, AIDS would hit the gay male community unrelentingly hard. As a community we would care for and bury hundreds of thousands of our loved ones. Without effect treatments to offer hope, thousands of us became caretakers while preparing to die ourselves. Even for those who remained uninfected, it was a traumatizing time that required extraordinary resilience and ingenuity to survive.

So why are the survivors of the HIV epidemic treated like the Rodney Dangerfields of catastrophic illnesses—why do we get no respect? Everyday there are stories in the media about survivors, someone who, despite the odds, survived something horrific. Think about the reverence with which we view survivors of the Holocaust. Then think about how survivors of the AIDS epidemic are regarded. Most of my fellow survivors feel invisible and forgotten by even their own community. We are simply not in the zeitgeist.

It is time to change this pervasive social amnesia.

On May 25 HBO premiers the film version of Larry Kramer’s play The Normal Heart set in the early days of the plague. Eleven days later, on June 5, 2014 Let’s Kick ASS—AIDS Survivor Syndrome is starting the first-ever National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD.org). That day is the thirty-third anniversary of the first CDC announcement of AIDS.

The theme for this inaugural observation day is “We’re Still Here” reflecting the heroic tenacity and determination of a generation of survivors who lived through the darkest decades of the AIDS epidemic—the 1980s and 1990s. It is a day to celebrate our survival and begin envisioning the future we never imagined. The first decades of our adulthood were overwhelmingly consumed with illness, death and fear. Now it is up to us to insure that the next decades are the best they can be. The least we can do is afford survivors the respect they have earned and acknowledge them as elders, teachers and leaders.

We are not limiting the term “long-term survivors” to those who are HIV-positive. Those people who remained uninfected—yet whose lives were also turned upside down by the communal and individual trauma brought on by the AIDS epidemic—are survivors too. Their needs and issues have also been largely overlooked even though taking care of their psychological health is crucial to keeping them negative.

Our goals for that day are embodied in our mission statement: “Let’s Kick ASS is a grassroots movement of long-term survivors, positive and negative, honoring the unique and profound experience of living through the AIDS epidemic. We’re dedicated to reclaiming our lives, ending isolation, and envisioning a future we never dreamed of” while paving the way for a bright and purposeful future for those of us who endured such a painful past.

Because of that past, we still have significant psychosocial hurdles as survivors that we urgently need to address. The concept of AIDS Survivor Syndrome (ASS) is just now gaining traction and it has not been studied nor recognized nearly as much as it should be. But it is very real and can be devastating.

I know this because my journey as a survivor involved a very dark time that I now recognize as trauma-related. This low point came nearly ten years after protease inhibitors and HAART changed the face of the epidemic. After surviving AIDS for 25 years, it was ASS that nearly killed me. Instead of thriving after my health stabilized, I became unglued. I thought I was going crazy. Nothing made sense. It felt like I was trying to catch a waterfall with my hands. I had way more questions than I had answers.

How had I lived this long? Why had I lived when so many of my loved ones and community had died? When I thought I was dying and those around me were dying, I had a purpose—fight to stay alive. This was a time that, as a community and as individuals, we discovered strength we didn’t know we had. We came together in a way had not before. The worst of times brought out the best in our community.

In large parts due to our efforts, the dying did dramatically slow and I did unexpectedly survive but what was my purpose now? Why was it so hard to go from dying to living? Perhaps because, of all the plans I had made, actually living out my life was not among them. For example, why had I not planned for retirement? The realization that I was heading for poverty in my unforeseen old age sent me into a tailspin. I acted out and became angry and withdrawn. My depression became suicidal ideation that turned in to well thought out plans to kill myself. I could only sleep with heavy doses of sleeping pills and I never felt rested. I was spinning out of control and I could not explain it to anyone because I didn’t understand it myself. I was so stressed that I came down with cryptococcal meningitis and spent two weeks in the hospital and nearly died.

At no point in my decades of therapy had anyone suggested my craziness was a perfectly natural response to the experience of living in trauma for a quarter of century. I remember the day that saw a piece on TV about vets and PTSD. I couldn’t stop crying. Could my reactions be post traumatic stress-related? After years of feeling out of control things began to make sense. After I began to share my story and realized that I wasn’t the only one perplexed by survival.

My suspicions were sadly confirmed when in December of 2012, the renowned AIDS activist Spenser Cox died. After his death there we accounts that he’d stopped taking his medications, the very treatments he’d help bring to market. By all accounts, he seemed just to give upafter fighting so hard for so long. He had helped save our lives but no one could save him. His death occurred around the time of several suicides by long-term survivors. It was in response to those deaths and my own experience that I started a group called Let’s Kick after I joined a new support group of long-term survivors. After a series of successful town hall forums in San Francisco over the last year, the group has just filed papers to become a non-profit.

Involvement in the group has changed my life. I no longer take anti-depressants, sleeping pills or Xanax for my anxiety. I now have a purpose. I have a community again filled with people I love and who seem to like to me too. I’m too old to be this corny, but damn if it doesn’t feel good.

I hope on June 5 and the rest of the year you’ll find ways to seek out survivors and listen to them. Do not just accept “I’m fine” when you ask, “How are you?” Listen to them. Acknowledge that they’ve come through the fire but they can still dream and be happy. Better yet, form a group to address the issues of long-term survivors in your community. Sure there is still plenty to complain about and much work to be done, but we can do it. Let’s all start on June 5 by coming together and saying “congratulations on surviving” to a heroic generation.

We’ve earned it.

If you in the Bay Area please join us for AIDS Survivors Summit/San Francisco 2014. AIDSSurvivorsSummit.org

Get your tickets here: https://aidssurvivorssummit2014.eventbrite.com

For more information on National HIV/AIDS Long-Term Survivors Awareness Day visit: www.NHALTSAD.org.

Thunderclap: https://www.thunderclap.it/projects/8932-long-term-survivors-day-jun-5

Facebook: https://www.facebook.com/NationalHIVAIDSLongTermSurvivorsAwarenessDay

Twitter: @AIDSsurvivors

 #AIDSSurvivorsSummit #NHALTSAD #LongTermSurvivors #AIDSSurvivors #WereStillHere

Let’s Kick ASS is on Facebook: https://www.facebook.com/AIDSSurvivorSyndrome

Twitter: @AIDSsurvivors and @LetsKickASS_org

Tez Anderson is the founder of Let’s Kick ASS. He lives in San Francisco with his husband Mark Ruiz. @LetsKickASS_org by email at LetsKickASS.org@gmail.com.


 


Planning for National Long-Term Survivors Awareness Day

Planning is underway for the first-ever National HIV/AIDS Long-Term Survivors Awareness Day on June 5.

In San Francisco we are planning a couple of events:

At 11:30 in National AIDS Memorial Grove we are holding a healing circle and tree-planiting ceremony. There will be a bus to take folks from the Castro to the Grove then return them to SF LGBT Center for an afternoon and evening AIDS SURVIVORS SUMMIT/SAN FRANCISCO 2014.

We’ll be joined by many Bay Area AIDS organizations for an informational expo and staff,  three talk show-style community discussions, special events throughout the day, interspersed with food and the unveiling of our new Long-Term Survivors Agenda, and capped off with a evening Pride social.

Tickets are required. We’ll be checking tickets at the door. Get them here. AND PLEASE BRING SOMEONE WITH YOU. This is a safe space and we promise it will be fun too.

https://aidssurvivorssummit2014.eventbrite.com they are FREE!

 

 

 

 

 

 

 

 

 

 

 

 

 


Disability Trap Video

Video of Let’s Kick ASS presents The Disability Trap: forum featuring panelists Ellyn Bloomfield, Openhouse (www.openhouse-sf.org), Andy Chu, Positive Resource Center (www.positiveresource.org), and John Fasesky, AIDS Legal Referral Panel (www.alrp.org.).

Thanks to David Cooney for shooting, editing and directing this video.

 

Let’s Kick ASS town hall: The Disability Trap April 16, 2014 from Let’s Kick (ASS) on Vimeo.


Disability Trap Follow Up

Let’s Kick ASS forum the Disability Trap was a huge success. Nearly 70 people showed to hear informative & insightful information about disability, retirement, and aging. Thank you to everyone who attended.

We also want to say a very big  “Thank you” to our amazing panelists Ellyn Bloomfield, Openhouse (www.openhouse-sf.org), Andy Chu, Positive Resource Center (www.positiveresource.org), and John Fasesky, AIDS Legal Referral Panel (www.alrp.org.). They are knowledgeable, smart, compassionate, and committed experts on the issues that affect all of us. The issues of disability, returning to work, retirement are complicated but it is clear there are folks who can and will assist. DO NOT THINK THERE IS NO HELP. These folks and organizations are heroes for survivors so please do not please do not hesitate to call on them.

One of our panelists is profiled on the ALRP site. Read about survivor and staff attorney John Fasesky’s remarkable story here: http://www.alrp.org/spotlight/john-fasesky-esq.

While you are on the site check out their upcoming events: http://www.alrp.org/events. They have several workshop and forums.

Openhouse is an amazing Bay Area organization. They do way more than housing. They hold a wide range of events for seniors and disabled folks check them out here: http://openhouse-sf.org/event/.

On April 25 from 10:00 AM-12:00 PM ALRP and Positive Resource Center is holding a workshop: Working While Receiving SSI/SSDI. Learn more here: http://www.alrp.org/events/workshop-working-while-receiving-ssissdi-3

Coming up on Tuesday, June 24, 2014 from 8:30 AM to 4:30 PM Positive Resource Center is hold THRIVING IN 2014, a daylong institute on access to income and healthcare for people living with HIV/AIDS. The goal of the institute is to help the community to better understand the most pressing challenges confronting people living with HIV/AIDS in accessing income and healthcare in San Francisco today. In partnership with: National Senior Citizens Law Center, National Immigration Law Center, San Francisco AIDS Foundation, California Health Advocates, AIDS Legal Referral Panel, Bay Area Legal Aid, Project Inform, and Openhouse.

Thriving in 2014 Workshop Flyer

The year 2014 is significant for the launching of Covered California and California’s version of Medicaid expansion (MAGI Medi-cal) under the Affordable Care Act, as well as the implementation of state and federal regulations on the equal treatment of same sex marriages.

Thriving in 2014 is comprised of a series of interactive exercises and explorations to encourage participation from the attendees. The morning session will consist of two panels of specialists (the first on access to income, the second on access to healthcare) who will discuss issues raised by the attendees. The afternoon breakout sessions will consist of Community Dialogues in subject areas including, Employment, Disability, Access to Healthcare, Immigrants’ Access to Public Benefits, Housing, and HIV & Seniors. Participants will engage in small group discussions on their chosen topics. The groups will reconvene and share their findings.

For more information, please contact Vaughn Villaverde at (415) 972-0874.

www.positiveresource.org/Thriving2014

ALSO

The Social Security form John talked about was the BPQI, benefits planning query. That is the first step in benefits planning is to know your current situation. This brief report has a lot of information including details about the SSI and SSDI benefits a person receives, the work history, earnings history and health coverage. You need to go to your local Social Security office and ask for your BPQI.

 


News About AIDS Survivors Summit

Let’s Kick ASS is the lead sponsor of National HIV/AIDS Long-Term Survivors Awareness Day on June 5. The 34th anniversary of the first reports of AIDS by the CDC in 1981.

This year’s theme, “We’re Still Here,” reflects the strength and resilience of the generation of survivors who lived through the darkest decades of the AIDS epidemic—the 1980s and 1990s. The We’re Still Here campaign continues the work of Let’s Kick ASS by focusing on the lives of long-tem survivors. By optimizing self-empowerment, increasing visibility, and ending stigma, NHALTSAD puts long-term survivors on the AIDS agenda. Our goal is to empower survivors to find meaning and purpose amidst the rubble of lives so incredibly impacted by AIDS.

Visit NHALTSAD.org to learn more.

Help us spread the word about National HIV/AIDS Long-Term Survivors Awareness Day June 5 https://www.thunderclap.it/projects/8932-long-term-survivors-day-jun-5?locale=en

AIDS Survivors Summit San Francisco 2014 — AIDSSurvivorsSummit.org

In San Francsico in June 5, 2014 we are hosting the first AIDS Survivors Summit. Bringing together Bay Area organizations and individuals to begin optimizing the lives of survivors.

Learn more at AIDS Survivors Summit San Francisco 2014 — AIDSSurvivorsSummit.org

facebook_event_472571146177345


Back to the Beginning Brave Video

LOOKING BACK

Let’s Kick ASS has grown tremendously since our first town hall THE DEFINITION OF BRAVE. We thought it would be good to repost the video from that town hall. It is a about two hours but well worth it.

 

LetsKickAss.org presents Definition of Brave Town Hall for Long-Term Survivors from Let’s Kick (ASS) on Vimeo.


Living and Thriving After Treatment for Anal Cancer Forum

JOIN 
UCSF HELEN DILLER FAMILY COMPREHENSIVE CANCER CENTER AND
THE HPV AND ANAL CANCER FOUNDATION FOR AN EDUCATIONAL FORUM ON

Living and Thriving After Treatment for Anal Cancer Addressing Long-Term Treatment Side Effects

Date:             Tuesday, May 13, 2014

Time:            6:30pm-8:30 PM

Location:    2340 Sutter Street, UCSF Mount Zion Campus

Lurie Conference Room (1st Floor)

Please RSVP to (646) 593-7739 or info@analcancerfoundation.org

A panel of experts and patients will discuss side effects often experienced by individuals treated for anal cancer. Panelists will address the short and long-term quality of life effects of chemotherapy and radiation and management of these side effects. Speakers include:

Joel Palefsky, MD Anal Neoplasia Clinic UCSF

President, International Anal Neoplasia Society

Katherine Van Loon, MD Medical Oncologist, UCSF

Allison Palandrani, DPT
Pelvic Health and Rehabilitation Center

Justine Almada Executive Director, HPV and Anal Cancer Foundation

Albert Chang, MD Radiation Oncologist, UCSF

Michael Berry, MD Anal Neoplasia Clinic, UCSF

Lurie Conference Room (1st Floor)

Co-sponsored by the UCSF Alliance Health Project, Project Inform, Shanti



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