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Major Research Announcement on AIDS Survivor Syndrome (ASS) For Older Adults Living With HIV & Those Affected By The HIV/AIDS Epidemic From Ron Stall, Ph.D., University Of Pittsburgh

New data from the Multi-Center AIDS Cohort Study presented by Ron Stall, Ph.D., M.P.H. and Voices of Survivors Themselves

[/cs_text][cs_text]

Since coining the term “AIDS Survivor Syndrome”, Let’s Kick ASS’ founder Tez Anderson has received hundreds of messages and emails from people who felt supported by the knowledge 1.) they were not crazy and 2.) not the only ones experiencing something they did not understand and couldn’t name.

We’ve needed research data to confirm the existence and impact of AIDS Survivor Syndrome (ASS). Now we have it from Ron Stall Ph.D., M.P.H., Director of the Center for LGBT Health Research and Associate Chair for Science Dept. of Behavioral and Community Health Sciences at the Graduate School of Public Health at the University of Pittsburgh has conducted a study using the Multi-Center AIDS Cohort Study (MACS) data.

Dr. Stall presents his findings Research on the AIDS Survivor Syndrome: New data from the Multi-Center AIDS Cohort Study and Voices of Survivors Themselves. The town hall event is for both providers and community. In addition to Dr. Stall presenting his findings, we’ll hear from HIV Long-Term Survivors some of those empowering messages.

Dr. Stall began working in HIV research in 1984 when he started working with the AIDS Behavioral Research Project, one of the first longitudinal studies of AIDS risk-taking behaviors in the world. Since that time, he has published over 190 peer-reviewed scientific papers on many different aspects of the AIDS epidemic.

Recently, Dr. Stall has become interested in the combined effects of multiple psychosocial epidemics, or “syndemics” in driving HIV risk. Ron is also “working with a group of very smart colleagues to propose a theory of resilience among gay men, and to propose a research agenda to study strengths among gay men.”Something HIV Long-Term Survivors exhibit daily and for decades.

Among his many gifts is putting scientific data into plain language makes it easier for everyone to understand and use health information. Plain language is a goal to which Let’s Kick ASS also ascribes. We are thrilled to welcome Dr. Stall as he explains the findings on AIDS Survivor Syndrome.

Please share this information with anyone who might benefit. Providers are our target audience. That is anyone who works with, ministers to, treats, or provide services to Older Adults Living with HIV and those affected by the worst years of the epidemic.

Read What is AIDS Survivor Syndrome and Why You Need to Know
What is AIDS Survivor SyndromeAnd Why You Need to Knowletskickass.hiv

Download a one page .pdf file What is AIDS Survivor Syndrome here http://bit.ly/WhatIsASS2017pdf

[x_image type=”none” float=”none” src=”http://letskickass.org/wp-content/uploads/2017/10/Tez-signature.png” info=”none” info_place=”top” info_trigger=”hover”]

Tez Anderson

Founder/Executive Director Let’s Kick ASS-AIDS Survivor Syndrome
Facebook https://www.facebook.com/AIDSSurvivorSyndrome
Site www.LetsKickASS.hiv
Twitter @LetsKickASS_hiv
HIV Long-Term Survivors Awareness Day is June 5

[/cs_text][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][cs_text id=”Mission” class=”cs-ta-left intro”]Let’s Kick ASS — AIDS Survivor Syndrome™ is the original grassroots movement of HIV Long-Term Survivors. We’re devoted to improving survivors’ lives by empowering, engaging, unifying, and elevating survivors to reclaim our lives, end isolation, and envision a future we never dreamed we’d live. Established in 2013, we’re peer-lead survivors who understand that who building resilient communities is the path forward and the key to not being moored in the past.

Based in San Francisco, with chapters in Portland, OR, Palm Springs, CA, Austin, TX and Washington, D.C. and we are rapidly expanding.

There are a total of 10,837 People Living With HIV (PLWH) in San Francisco. 3,741 of them are Pre-HAART Long-Term Survivors (LTS) defined as positive in 1996 or prior. That means at least 34.5% of all people living with HIV in San Francisco are HIV Longest-Term Survivors.

This does not include HIV Long-Term Survivors who have been living with HIV for 20 who tested after 1996 nor Long-Term Survivors that were living outside of San Francisco at time of diagnosis and then subsequently moved to the City.

Compare that to New York New York City Department of Public Health who estimates there are 26% Pre-HAART LTS in NYC.

Let’s Kick ASS—AIDS Survivor Syndrome is a 501(c)(3) non-profit organization.

Below is our Public Service Announcement created by The HIV Story Project.[/cs_text][cs_element_image _id=”16″][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_video_embed no_container=”false” type=”16:9″ id=”PSA” class=”Video”]

What is AIDS Survivor Syndrome? Watch and find out. To learn more go to http://letskickass.org

[/x_video_embed][/cs_column][/cs_row][/cs_section][cs_section id=”Join League” parallax=”true” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ class=”mailing list sign on” style=”margin: 10px;padding: 10px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2018/03/hiv-lts-league.png” alt=”” link=”true” href=”https://www.facebook.com/groups/longtermsurvivorsleauge/” title=”Join our private Facebook page” target=”blank” info=”none” info_place=”top” info_trigger=”hover” info_content=””][x_section style="margin: 0; padding: 40px;" bg_image="http://letskickass.org/wp-content/uploads/2017/01/hands.jpg"][x_row ][x_column type="1/1"]

[/x_column][/x_row][/x_section][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/04/Medium-LKA-hiv-site-logo.png” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][x_share title=”Spread the word and be a leader.” share_title=”Spread the word and be a leader…” facebook=”true” twitter=”true” google_plus=”true” linkedin=”true” pinterest=”true” reddit=”true” email=”true” email_subject=”Check out Let's Kick ASS when you have a chance. Join the HIV Long-Term Survivors League!”][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/04/call-to-action-01.png” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_blockquote cite=”” type=”center” id=”Short intention” class=”intent”]Let’s Kick ASS is devoted to ensuring HIV Long-Term Survivors are empowered to age well with HIV and thrive.[/x_blockquote][cs_text id=”call2action” class=”call to action”]

The new face of HIV is aging. More than 55% percent of people with HIV are over the age of 50. By 2020, that number will soar to 70 percent. We face a multi-pronged crisis affecting the physical, mental and financial well-being of older adults with HIV and our families, friends, and caregivers. Not to mention the impending stress on our already limited health care resources as older adults with HIV need increasing amounts of complicated care and services.

26% of all people living with HIV are Long-Term Survivors, meaning they became positive prior to 1997.

On June 5, 2017—HIV Long-Term Survivors Awareness Day (HLTSAD)—let’s come together and declare that HIV Long-Term Survivors (HLTS) will not be forgotten nor rendered invisible, especially as we talk about “Ending AIDS.” 2017 theme is “HIV-Resilient.”

Too many of us are set aside to die quietly without understanding what is happening to us.  #HIVResilient is our new program to strengthen our communities and age well with HIV. We also want t draw attention to some of the changes that need to be made in our communities and in our healthcare system to ensure that older adults with HIV have the tools we need to live productive lives into our older years. We will draw attention to the unique contributions we make to our communities and the national discourse on healthy aging, something that seemed unimaginable until recently.

We challenge you, HIV Long-Term Survivors, other adults with HIV, and the people who support us to join with us calling for the following:

  • Recognition of AIDS Survivor Syndrome (ASS) and Its Impact on Long-Term Survivors Mental and Social Health. The first twenty years of the HIV/AIDS epidemic were traumatic and contributed to significant stress and illness among survivors today, as we enter the 36th year of the epidemic.AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic, especially vulnerable are those who became HIV-positive in the 1980s and 1990s, when having HIV was considered a terminal diagnosis.Yet, ASS often goes undiagnosed or misdiagnosed as PTSD. Even when diagnosed, there’s a shortage of effective and sustained mental health services available to older adults aging with HIV. AIDS Survivor Syndrome needs to be considered a comorbidity.
  • We urgently need access to trauma-informed care that is culturally sensitive to the experiences of HIV Long-Term Survivors. Because HLTS are dying from the aftereffects of trauma, mental healthcare professionals and peer-to-peer support facilitators need training on how to treat ASS, including information on how ASS includes elements of depression and survivor guilt but is more than just these two conditions. It is critical that HLTS rebuild control and empowerment, along with a sense of meaning and purpose, and improved access to healthcare providers and other support services providers is needed to achieve these goals.
  • Efforts to End Ongoing Systemic Stigma and Institutional Invisibility of HIV Long-Term Survivors By Inviting Them to Join the National Conversation on Community Development for People With HIV: HIV Long-Term Survivors have a wealth of knowledge and a depth of experience that must be tapped in order to better understand the path forward to create communities where our needs – mental, physical and financial – are met. But, too many HLTS feel forgotten and have disengaged from their communities.
  • We ask for government at all levels, as well as AIDS Service Organizations, to make room at the table for HLTS of all ages, races, sexualities and genders, to offer our experience and express our unique needs. Older adults with HIV face ongoing social, behavioral and mental issues, as well as isolation, and there’s a need to identify unique and innovative solutions to be implemented at the local, state and national level to build strong social supports and an improved healthcare system better prepared to meet the needs of older adults with HIV.
  • Additionally, large numbers of HLTS face financial difficulty because they are likely to have been on disability for decades. Many survivors live on or below the poverty level. This has far-reaching effects that impact access to quality care and affordable housing, ability to engage in the community and efforts to improve self-esteem and motivation. We need innovative programs that can help HLTS return to work and earn a livable wage, as well as efforts to strengthen the current Social Security disability system for those who cannot work.
  • With HLTS at the table, along with a range of government officials, policymakers, community advocates, and healthcare providers, we will uncover practical ways to address the crisis facing unsupported older adults with HIV and re-engage them in their health and their communities.
  • Prioritization of Research on the Health Needs of Older Adults With HIV: As people with HIV are living longer, our health is declining as a result of the complex interplay of mental and social health, multimorbidity, and HIV in older adults that are not well understood. The presence of multimorbidity can lead to polypharmacy that impacts treatment adherence and optimal care. Also, some believe that people with HIV are aging faster than our HIV negative peers. We know that older adults with HIV face a higher number of comorbidities than adults at the same age without HIV, but we need to better understand the psychological and biomedical forces at play that are creating this outcome.
  • HLTS may have multiple drug resistance, resulting in limited treatment options (known as salvage therapy) and both health and physical ramifications from long-term HIV infection, such as the development of excess visceral adipose tissue (VAT) that can lead to other comorbidities. HLTS require more specialized care that is highly integrated.

We are calling for increased medical research to identify some of the factors that are causing older people with HIV to experience poorer health than their negative peers. With this data in hand, we can determine a path forward to ensure that older adults with HIV are better able to manage multimorbidity and improve their health in their older years.

We applaud the Office of AIDS Research, National Institutes of Health for including HIV-associated comorbidities and premature aging associated with long-term HIV disease and antiretroviral therapy in its list of high-priority topics of research for support using AIDS-designated funds. We ask that researchers continue this focus and quickly add to the body of research on these topics.

The goal is moving beyond merely surviving to thriving.

There is a fundamental difference between thriving and surviving. Surviving means, “to continue to live or exist,” while thriving means “to grow or develop well, to prosper or to flourish.” It is time to advance the conversation beyond survivorship and focus on a culture of aging well with HIV. Beneath our losses, grief and trauma is a foundation of resilience and compassion. It is a testament to the human spirit, to individuals and communities who rolled up their sleeves and refused to accept HIV as a death sentence, that we are here now. The result of that resilience is we are living longer. Resiliency is really about moving from a mindset of survival to thriving. The goal is to optimize survivors’ lives as we age.

Social Media Hashtags: #HIVResilient    #HLTSAD2017    #LongTermSurvivors 

To learn more about HLTS, please read & share our HIV Long-Term Survivors Declaration: A Vision For Our Future by Let’s Kick ASS and called for Building a Focus on Healthy Aging for Older Adults Living With HIV: A Call to Action [/cs_text][/cs_column][/cs_row][/cs_section][/cs_content]

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Major Research Announcement on AIDS Survivor Syndrome (ASS) For Older Adults Living With HIV & Those Affected By The HIV/AIDS Epidemic From Ron Stall, Ph.D., University Of Pittsburgh

New data from the Multi-Center AIDS Cohort Study presented by Ron Stall, Ph.D., M.P.H. and Voices of Survivors Themselves

[/cs_text][cs_text]

Since coining the term “AIDS Survivor Syndrome”, Let’s Kick ASS’ founder Tez Anderson has received hundreds of messages and emails from people who felt supported by the knowledge 1.) they were not crazy and 2.) not the only ones experiencing something they did not understand and couldn’t name.

We’ve needed research data to confirm the existence and impact of AIDS Survivor Syndrome (ASS). Now we have it from Ron Stall Ph.D., M.P.H., Director of the Center for LGBT Health Research and Associate Chair for Science Dept. of Behavioral and Community Health Sciences at the Graduate School of Public Health at the University of Pittsburgh has conducted a study using the Multi-Center AIDS Cohort Study (MACS) data.

Dr. Stall presents his findings Research on the AIDS Survivor Syndrome: New data from the Multi-Center AIDS Cohort Study and Voices of Survivors Themselves. The town hall event is for both providers and community. In addition to Dr. Stall presenting his findings, we’ll hear from HIV Long-Term Survivors some of those empowering messages.

Dr. Stall began working in HIV research in 1984 when he started working with the AIDS Behavioral Research Project, one of the first longitudinal studies of AIDS risk-taking behaviors in the world. Since that time, he has published over 190 peer-reviewed scientific papers on many different aspects of the AIDS epidemic.

Recently, Dr. Stall has become interested in the combined effects of multiple psychosocial epidemics, or “syndemics” in driving HIV risk. Ron is also “working with a group of very smart colleagues to propose a theory of resilience among gay men, and to propose a research agenda to study strengths among gay men.”Something HIV Long-Term Survivors exhibit daily and for decades.

Among his many gifts is putting scientific data into plain language makes it easier for everyone to understand and use health information. Plain language is a goal to which Let’s Kick ASS also ascribes. We are thrilled to welcome Dr. Stall as he explains the findings on AIDS Survivor Syndrome.

Please share this information with anyone who might benefit. Providers are our target audience. That is anyone who works with, ministers to, treats, or provide services to Older Adults Living with HIV and those affected by the worst years of the epidemic.

Read What is AIDS Survivor Syndrome and Why You Need to Know
What is AIDS Survivor SyndromeAnd Why You Need to Knowletskickass.hiv

Download a one page .pdf file What is AIDS Survivor Syndrome here http://bit.ly/WhatIsASS2017pdf

[x_image type=”none” float=”none” src=”http://letskickass.org/wp-content/uploads/2017/10/Tez-signature.png” info=”none” info_place=”top” info_trigger=”hover”]

Tez Anderson

Founder/Executive Director Let’s Kick ASS-AIDS Survivor Syndrome
Facebook https://www.facebook.com/AIDSSurvivorSyndrome
Site www.LetsKickASS.hiv
Twitter @LetsKickASS_hiv
HIV Long-Term Survivors Awareness Day is June 5

[/cs_text][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][cs_text id=”Mission” class=”cs-ta-left intro”]Let’s Kick ASS — AIDS Survivor Syndrome™ is the original grassroots movement of HIV Long-Term Survivors. We’re devoted to improving survivors’ lives by empowering, engaging, unifying, and elevating survivors to reclaim our lives, end isolation, and envision a future we never dreamed we’d live. Established in 2013, we’re peer-lead survivors who understand that who building resilient communities is the path forward and the key to not being moored in the past.

Based in San Francisco, with chapters in Portland, OR, Palm Springs, CA, Austin, TX and Washington, D.C. and we are rapidly expanding.

There are a total of 10,837 People Living With HIV (PLWH) in San Francisco. 3,741 of them are Pre-HAART Long-Term Survivors (LTS) defined as positive in 1996 or prior. That means at least 34.5% of all people living with HIV in San Francisco are HIV Longest-Term Survivors.

This does not include HIV Long-Term Survivors who have been living with HIV for 20 who tested after 1996 nor Long-Term Survivors that were living outside of San Francisco at time of diagnosis and then subsequently moved to the City.

Compare that to New York New York City Department of Public Health who estimates there are 26% Pre-HAART LTS in NYC.

Let’s Kick ASS—AIDS Survivor Syndrome is a 501(c)(3) non-profit organization.

Below is our Public Service Announcement created by The HIV Story Project.[/cs_text][cs_element_image _id=”16″][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_video_embed no_container=”false” type=”16:9″ id=”PSA” class=”Video”]

What is AIDS Survivor Syndrome? Watch and find out. To learn more go to http://letskickass.org

[/x_video_embed][/cs_column][/cs_row][/cs_section][cs_section id=”Join League” parallax=”true” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ class=”mailing list sign on” style=”margin: 10px;padding: 10px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2018/03/hiv-lts-league.png” alt=”” link=”true” href=”https://www.facebook.com/groups/longtermsurvivorsleauge/” title=”Join our private Facebook page” target=”blank” info=”none” info_place=”top” info_trigger=”hover” info_content=””][x_section style="margin: 0; padding: 40px;" bg_image="http://letskickass.org/wp-content/uploads/2017/01/hands.jpg"][x_row ][x_column type="1/1"]

[/x_column][/x_row][/x_section][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/04/Medium-LKA-hiv-site-logo.png” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][x_share title=”Spread the word and be a leader.” share_title=”Spread the word and be a leader…” facebook=”true” twitter=”true” google_plus=”true” linkedin=”true” pinterest=”true” reddit=”true” email=”true” email_subject=”Check out Let's Kick ASS when you have a chance. Join the HIV Long-Term Survivors League!”][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/04/call-to-action-01.png” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_blockquote cite=”” type=”center” id=”Short intention” class=”intent”]Let’s Kick ASS is devoted to ensuring HIV Long-Term Survivors are empowered to age well with HIV and thrive.[/x_blockquote][cs_text id=”call2action” class=”call to action”]

The new face of HIV is aging. More than 55% percent of people with HIV are over the age of 50. By 2020, that number will soar to 70 percent. We face a multi-pronged crisis affecting the physical, mental and financial well-being of older adults with HIV and our families, friends, and caregivers. Not to mention the impending stress on our already limited health care resources as older adults with HIV need increasing amounts of complicated care and services.

26% of all people living with HIV are Long-Term Survivors, meaning they became positive prior to 1997.

On June 5, 2017—HIV Long-Term Survivors Awareness Day (HLTSAD)—let’s come together and declare that HIV Long-Term Survivors (HLTS) will not be forgotten nor rendered invisible, especially as we talk about “Ending AIDS.” 2017 theme is “HIV-Resilient.”

Too many of us are set aside to die quietly without understanding what is happening to us.  #HIVResilient is our new program to strengthen our communities and age well with HIV. We also want t draw attention to some of the changes that need to be made in our communities and in our healthcare system to ensure that older adults with HIV have the tools we need to live productive lives into our older years. We will draw attention to the unique contributions we make to our communities and the national discourse on healthy aging, something that seemed unimaginable until recently.

We challenge you, HIV Long-Term Survivors, other adults with HIV, and the people who support us to join with us calling for the following:

  • Recognition of AIDS Survivor Syndrome (ASS) and Its Impact on Long-Term Survivors Mental and Social Health. The first twenty years of the HIV/AIDS epidemic were traumatic and contributed to significant stress and illness among survivors today, as we enter the 36th year of the epidemic.AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic, especially vulnerable are those who became HIV-positive in the 1980s and 1990s, when having HIV was considered a terminal diagnosis.Yet, ASS often goes undiagnosed or misdiagnosed as PTSD. Even when diagnosed, there’s a shortage of effective and sustained mental health services available to older adults aging with HIV. AIDS Survivor Syndrome needs to be considered a comorbidity.
  • We urgently need access to trauma-informed care that is culturally sensitive to the experiences of HIV Long-Term Survivors. Because HLTS are dying from the aftereffects of trauma, mental healthcare professionals and peer-to-peer support facilitators need training on how to treat ASS, including information on how ASS includes elements of depression and survivor guilt but is more than just these two conditions. It is critical that HLTS rebuild control and empowerment, along with a sense of meaning and purpose, and improved access to healthcare providers and other support services providers is needed to achieve these goals.
  • Efforts to End Ongoing Systemic Stigma and Institutional Invisibility of HIV Long-Term Survivors By Inviting Them to Join the National Conversation on Community Development for People With HIV: HIV Long-Term Survivors have a wealth of knowledge and a depth of experience that must be tapped in order to better understand the path forward to create communities where our needs – mental, physical and financial – are met. But, too many HLTS feel forgotten and have disengaged from their communities.
  • We ask for government at all levels, as well as AIDS Service Organizations, to make room at the table for HLTS of all ages, races, sexualities and genders, to offer our experience and express our unique needs. Older adults with HIV face ongoing social, behavioral and mental issues, as well as isolation, and there’s a need to identify unique and innovative solutions to be implemented at the local, state and national level to build strong social supports and an improved healthcare system better prepared to meet the needs of older adults with HIV.
  • Additionally, large numbers of HLTS face financial difficulty because they are likely to have been on disability for decades. Many survivors live on or below the poverty level. This has far-reaching effects that impact access to quality care and affordable housing, ability to engage in the community and efforts to improve self-esteem and motivation. We need innovative programs that can help HLTS return to work and earn a livable wage, as well as efforts to strengthen the current Social Security disability system for those who cannot work.
  • With HLTS at the table, along with a range of government officials, policymakers, community advocates, and healthcare providers, we will uncover practical ways to address the crisis facing unsupported older adults with HIV and re-engage them in their health and their communities.
  • Prioritization of Research on the Health Needs of Older Adults With HIV: As people with HIV are living longer, our health is declining as a result of the complex interplay of mental and social health, multimorbidity, and HIV in older adults that are not well understood. The presence of multimorbidity can lead to polypharmacy that impacts treatment adherence and optimal care. Also, some believe that people with HIV are aging faster than our HIV negative peers. We know that older adults with HIV face a higher number of comorbidities than adults at the same age without HIV, but we need to better understand the psychological and biomedical forces at play that are creating this outcome.
  • HLTS may have multiple drug resistance, resulting in limited treatment options (known as salvage therapy) and both health and physical ramifications from long-term HIV infection, such as the development of excess visceral adipose tissue (VAT) that can lead to other comorbidities. HLTS require more specialized care that is highly integrated.

We are calling for increased medical research to identify some of the factors that are causing older people with HIV to experience poorer health than their negative peers. With this data in hand, we can determine a path forward to ensure that older adults with HIV are better able to manage multimorbidity and improve their health in their older years.

We applaud the Office of AIDS Research, National Institutes of Health for including HIV-associated comorbidities and premature aging associated with long-term HIV disease and antiretroviral therapy in its list of high-priority topics of research for support using AIDS-designated funds. We ask that researchers continue this focus and quickly add to the body of research on these topics.

The goal is moving beyond merely surviving to thriving.

There is a fundamental difference between thriving and surviving. Surviving means, “to continue to live or exist,” while thriving means “to grow or develop well, to prosper or to flourish.” It is time to advance the conversation beyond survivorship and focus on a culture of aging well with HIV. Beneath our losses, grief and trauma is a foundation of resilience and compassion. It is a testament to the human spirit, to individuals and communities who rolled up their sleeves and refused to accept HIV as a death sentence, that we are here now. The result of that resilience is we are living longer. Resiliency is really about moving from a mindset of survival to thriving. The goal is to optimize survivors’ lives as we age.

Social Media Hashtags: #HIVResilient    #HLTSAD2017    #LongTermSurvivors 

To learn more about HLTS, please read & share our HIV Long-Term Survivors Declaration: A Vision For Our Future by Let’s Kick ASS and called for Building a Focus on Healthy Aging for Older Adults Living With HIV: A Call to Action [/cs_text][/cs_column][/cs_row][/cs_section][/cs_content]

AIDS Survivor Syndrome

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What is AIDS Survivor Syndrome and Why Do You Need to Know?

By Tez Anderson, Founder, Let’s Kick ASS

First the Why

Too many HIV long-term survivors are struggling to make sense of their lives in the present-day. We’re the survivors of a pandemic now going on longer than 35 years. We’re living lives filled with too many ghosts and the guilt of surviving when so many of our loved ones didn’t.

We live in a world where politicians, policy makers, HIV agencies and activist are focused on “Ending AIDS” and creating an “AIDS-Free Generation.” Of course, those are worthy, admirable goals but can you imagine how the phrase an “AIDS-Free Generation” sounds to the first generation who acquired the virus during the “Plague Years”? To people still living with AIDS? Most of us finish that phrase with “after I’m dead.”

For us, AIDS was more than simply a medical diagnosis or the end-stage of a deadly disease. AIDS shaped our psyches. It also galvanized our community and gave us a sense of meaning and purpose.

AIDS was a cultural, political and social force that changed the course of our lives and killed many of our loved ones and decimated our community. AIDS robbed us of a carefree youth while trying to kill us too. Do you know what it is like to have loaded gun aimed at your head for 25 and 35 years?
All of that is affecting our lives right now. And many of us rightly feel forgotten and invisible in the current HIV discussions.

Too many HIV long-term survivors have decided to end their lives rather than face the complexities and implications of aging with HIV. While “Ending AIDS” may be good public health policy and good medicine, but it has huge ramifications on the lives of survivors. WE MUST ADDRESS IT.

There are many of us living with AIDS for 20 and 30 years not only living with HIV but actual AIDS. Beyond just having HIV, we are living with AIDS. If by some miracle we find some version of a cure or (more realistically various treatments, we call “cures”) those of us who took AZT and early monotherapy will still have neuropathy and bodies that age faster due to our histories with HIV and AIDS.

We will continue to live in will still be living in poverty and will feel forgotten and ignored unless we change the culture and demand more for those who purport to admire us for what we’ve lived through.

What I’m focused on is happening right now before us and what we can do to change it. Let’s leave finding a cure to scientists and researchers who have thus far not succeed and figure out how to take care of older adults aging with HIV and long-term survivors. It is urgent. We do not have the luxury of time.

Background

  • Over 4.2 million people living with HIV worldwide over age 50. There are 1.2 million individuals with HIV (PWH) in the U.S., as of 2015 over half of them are aged 50 and older, a proportion that will rise to 70% by 2020.
  • Recent data from the San Francisco Department of Public Health (SFDPH) says there are 3,741 Pre-HAART HIV Long-Term Survivors (HLTS) currently living in San Francisco. That’s 34.5% of all People Living with HIV in San Francisco are Pre-HAART HLTS, defined as HIV-positive in 1996 or prior years. This number doesn’t include Long-Term Survivors living outside of San Francisco at the time of diagnosis and then subsequently moved to The City. Nor does not it include HIV Long-Term Survivors who have been living with HIV for ten who tested positive after 1996 and are also Aging with HIV.
  • Recent data from New York City estimates that 26% of all people living with HIV in Manhattan are HIV Long-Term Survivors, meaning they acquired HIV before the availability of Highly Active Antiretroviral Therapy (HAART) in 1996.
  • It is likely that that the national percentage is somewhere between 34% and 26%. We need that data for all jurisdictions.
  • The success of HAART in managing HIV infection has been remarkable, with life expectancies of recently infected PWHA in treatment approaching those of non-infected peers.
  • Protease inhibitors transformed HIV infection from a “death sentence” to a more chronic but somewhat manageable condition.
  • This sea change in the trajectory of the epidemic paved the way for burgeoning cohort of Pre-HAART HIV Long-Term Survivors and the emergence of an AIDS Survivor Syndrome (ASS).
  • Pre-HAART and Post-HAART HIV-infection constitute distinct cohorts with different medical, mental and social health needs.
  • For Pre-HAART HIV Long-Term Survivors (HLTS) who took the first line, inadequate monotherapies quickly developed drug resistances making finding treatment options more challenging. The first medications also exacted an enormous physical toll. Things like lipodystrophy that caused fat redistribution and Peripheral Neuropathy that causes tingling and numbness in the hands and feet. Neuropathy has lasting and permanent implications. It impairs mobility and hampers engagement with the community.

What is AIDS Survivor Syndrome?

AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic, especially vulnerable are those who became HIV-positive in the 1980s and 1990s when having HIV was considered a terminal diagnosis.

AIDS Survivor Syndrome is a “syndemic” of psychosocial health problems that exist on a spectrum. It varies by degrees of intensity, and it affects HIV Long-Term Survivors differently at different times. It not a linear phenomenon.

What signs and symptoms define AIDS Survivor Syndrome?

  • · Depression
  • · Lack of Future Orientation
  • · Panic from Unexpected Older Age
  • · Suicidality
  • · Sexual risk-taking
  • · Self-destructive Behavior
  • · Substance Abuse
  • · Social Withdrawal & Isolation
  • · Persistent Negative Thoughts like Deep Regret and overwhelming Shame
  • · Survivor’s Guilt
  • · Cognitive Impairment Such as Poor Concentration and Loss of Immediate memory
  • · Loss of Ability to Enjoy Life or Anhedonia
  • · Deep Sadness
  • · Emotional Numbness
  • · Anxiety & Nervousness
  • · Irritability or Flashes of Anger
  • · Difficulty Falling Asleep or Staying Asleep
  • · Nightmares
  • · Personality Changes
  • · Feeling Tense, “On Guard” or Hypervigilance.
  • · Low Self-Esteem & Self-Worth
  • · Sense of Hopelessness
  • · Irritability
  • · Self-Stigma

Depending on other stressors like ongoing multimorbidities and the impact of poverty on Health-Related Quality of Life (HRQoL) issues can be devastating. Social isolation, hopelessness, chronic depression and lack of future orientation are near the top of the list of problems affecting HIV Long-Term Survivors now.

The sustained accumulation of trauma from living through the early decades distinguishes AIDS Survivor Syndrome from the more commonly known Post-Traumatic Stress Disorder (PTSD), in which trauma typically involves a single event or events of limited duration. PTSD is misdiagnosis or a partial diagnosis at best. AIDS survival has more in common with Complex Post Traumatic Stress (CPTS) because of the duration of the “Plague Years” filled with mass casualties and life-threatening illnesses. For 20 years, people living with HIV were under constant threat of illness and death. And they had witnessed enough of it to know the horror of that death.

There are numerous challenges to survival including high levels of multi-morbidity, persistent behavioral health issues, inadequate social supports, barriers to accessing community-based services, and truncated opportunities for employment and participation in society resulting in insufficient financial resources and poor quality-of-life.

Thus far ASS is a phenomenon that has been well documented anecdotally by long-term survivors. It is unknown what a history of trauma and abuse contributes to making some more susceptible to ASS. We also do not know what the roles of resilience factors and psychological well-being and spirituality play in creating effective interventions. It’s the idea that aging is riddled with terror and more uncertainty after decades of uncertainty, that was the impetus for starting Let’s Kick ASS, a grassroots movement of long-term survivors. What is needed now is data to confirm, and that is just getting underway.

Conclusions

  • Kicking AIDS Survivor Syndrome requires interventions that focus on strengthening resiliencies and creating a sense of future orientation.
  • Beyond mere survival we have to changing the narrative a thriving mindset and make Healthy Aging with HIV the goal. We need to improve those factors we have control over so aging is not so perilous and fraught with fear.
  • Survivors need to be celebrated and ennobled like survivors of other atrocities.
  • We have to battle and reject HIV-related stigma by strengthening empowered networks of long-term survivors aging with HIV including older gay and bisexual men, women survivors and transgender people. By increasing engagement, we battle depression and hopelessness.
  • We also need Person-Center Health were survivors are partners in their care.
  • Trauma-Informed Care is also vital to understanding the full picture of health care for older adults aging with HIV.
  • Cultural humility training to Health Care Providers so they aware of the possible issues affecting an aging population who never expected to be aging.
  • We also know that online social networks are helping older survivors from community and create in person communities. Much more needs to be done to reach those who are not engaged.
  • We need to explore the role of technology and smartphone apps in helping survivors improve their quantity of life.
  • Finding ways to overcome the financial difficulties faced by many survivors that excludes them from participating in community when they want to.
  • Helping survivors think long-term and to see aging as something to embrace not a barrier or limitation.
  • Embrace a mindset of Health Aging with HIV not merely surviving.

The direction of the Health and Human Services under a hostile director is beyond scary. But we’ve been here before. We lived through 8 years of Reagan and two Bushs. We’ll get through the short-lived Trump debacle.

A Trump presidency compel us to carry on mobilizing, empowering, engaging, unifying all people living with.

Yours in resilience,

Tez Anderson

Twitter// @TezAnderson
To learn more, please visit www.LetsKickASS.hiv
Follow Us On Facebook: https://www.facebook.com/AIDSSurvivorSyndrome/ 
Twitter: @LetsKickASS_org

Below is the poster I presented at the International AIDS Conference in Durbin, South Africa 2016[/cs_text][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/08/what-is-ass-poster.png” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”][x_image type=”none” src=”http://letskickass.org/wp-content/uploads/2017/08/Tez-Durban-Poster.jpg” alt=”” link=”false” href=”#” title=”” target=”” info=”none” info_place=”top” info_trigger=”hover” info_content=””][/cs_column][/cs_row][/cs_section][cs_section parallax=”false” separator_top_type=”none” separator_top_height=”50px” separator_top_angle_point=”50″ separator_bottom_type=”none” separator_bottom_height=”50px” separator_bottom_angle_point=”50″ style=”margin: 0px;padding: 45px 0px;”][cs_row inner_container=”true” marginless_columns=”false” style=”margin: 0px auto;padding: 0px;”][cs_column fade=”false” fade_animation=”in” fade_animation_offset=”45px” fade_duration=”750″ type=”1/1″ style=”padding: 0px;”] [/cs_column][/cs_row][/cs_section][/cs_content]

DONATE

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