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
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.
The town hall is Friday, November 3, 2017, starting at NOON. Doors open at 11:30 AM. Lunch will be provided, courtesy of Napo Pharmaceuticals, makers of Mytesi®, approved by the U.S. FDA for the symptomatic relief of noninfectious diarrhea in adults with HIV/AIDS on antiretroviral therapy.
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
Founder/Executive Director Let’s Kick ASS-AIDS Survivor Syndrome
HIV Long-Term Survivors Awareness Day is June 5
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.
Spread the word and be a leader.
Let’s Kick ASS is devoted to ensuring HIV Long-Term Survivors are empowered to age well with HIV and thrive.
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