HIV Long-Term Survivors Declaration: A Vision for Our Future 2018
On June 5, 1981, the Centers for Disease Control (CDC) reported a cluster of rare infections in gay men in Los Angeles, an outbreak of a new, as yet unnamed, pathogen slammed an already stigmatized community. First reported about gay men. Later injection drug users, African Americans, and Latinos. New cases soon spread like wildfire around the globe.
The AIDS Epidemic is a historically unique epidemic. No plague in modern times has taken such a devastating toll on the world’s health, economy, and welfare.
We now know that HIV has been around much longer. A recent piece in The Advocate talks about a black teen who died of AIDS in 1969. According to the New York Times, “Genetic analysis pushes the estimated origin of HIV back to between 1884 and 1924, with a more focused estimate at 1908.”
This June 5 marks the anniverary of that announcement. It is sighted as “the beginning of the AIDS Pandemic” which changed our lives forever.
2018 also marks the 22nd anniversary of Highly Active Antiretroviral Therapy (HAART) that changed HIV from a death sentence to a “chronic manageable illness”.
Below is our declaration laying out the issues we’re confronting now.
“The meme ‘we lost an entire generation to AIDS’ is wrong. We lost much of a generation, but there are many of us still here, surviving against the odds.”
— Tez Anderson, Let’s Kick ASS
Since 2015, June 5, is now HIV Long-Term Survivors Awareness Day, started by Let’s Kick ASS in 2014. The 2018 theme is “It Is Still Not Over.” The website is: HLTSAD.org. It’s an offical awareness day on AIDS.gov: https://www.hiv.gov/events/awareness-days/hiv-long-term-survivors-day
2017 Hashtags are #LongTermSurvivors, #ItIsStillNotOver, #HLTSAD2018, and #HIVResilient.
Watch our short Public Service Announcement video below.
We’re Long-Term Survivors of the AIDS pandemic, the most devastating health crisis of the modern era. With courage and compassion, we survived the darkest days of the plague. Without access to effective treatments, we were forced to rely on each other and ourselves.
As individuals and community, we exhibited strengths we didn’t know we had. Over time we’ve proven, we are resilient, and we are profoundly impacted by the aftermath of unparalleled survivorship. We come from diverse races and ethnic backgrounds, genders, incomes, ages, and physical abilities.
We never imagined we’d live this long let’s make the most of the time we have left, understanding that our numbers are in the tens of thousands.
We strive not to survive merely, but to thrive in meaningful, productive, independent and connected lives free of stigma, ageism, and discrimination regardless of age, gender, race or ethnicity, sexual orientation, gender identity or socioeconomic circumstance.
Since the first instances of “gay cancer” posted in our community in 1981, we rallied together against an indifferent world to care for each other and collectively fight back against HIV. Now we unite to change the conversation to Aging Well with HIV. It’s time to begin a positive path forward. We have valuable lessons to teach our community and the world about living and resilience.
Who Are HIV Long-Term Survivors (HLTS)?
- Pre-HAART LTS — Longest-term survivors are individuals who acquired HIV in the 1980s and 1990s, before the advent of highly effective antiretroviral therapy (pre-HAART) when having HIV was considered a death sentence.
- Perinatal HIV LTS—Individuals born with HIV or who acquired the virus as babies who are no in their twenties and thirties.
- Post-HAART LTS — those who tested past 1996 and living with HIV for over ten years.
- HIV-Negative LTS — There are long-term survivors of a different stripe. They are the survivors who remain HIV-negative. They were lovers, caretakers, and frontline healthcare workers. They were lesbians who stepped in to take care of people with HIV and AIDS. They too suffered enormous losses.
It has been over thirty years since the Denver Principles began the self-empowerment movement for people living with HIV, but HLTS now find our voices muted. Our issues are sidelined by the agencies we helped to form. Conferences devoted to HIV are focused on newer, trendier topics while relegating long-term survivors to the sidelines and affinity sessions off the main stage.
Our continued marginalization exacts a toll our mental health, which in turn affects our overall physical health and quality of life. The White House updated the National HIV/AIDS Strategy for the U.S. in July 2015 with no mention of the experiences, or the lived reality of long-term survivors.
It’s up to us to reclaim our silenced voices and ensure that long-term survivors’ perspectives are factored into the talk about “the end of AIDS,” “AIDS-free generation” and campaigns like Getting to Zero, it becomes vital that we take care of and acknowledge long-term survivors.
We are into the fourth decade of the HIV epidemic, and half the people living with HIV are age 50 and older. By 2020 that number will be 70%. These statics are a wake-up call to focus on the needs and reality of older individuals aging with HIV. Because we had the audacity to survive, we now face a host of challenges few of us could have predicted.
Pre-HAART HIV Long-Term Survivors — those living longest with HIV — have physical and psychosocial implications that are vastly different from those who acquired HIV later in the epidemic. They constitute a separate cohort. The have survived HIV/AIDS from the days when it was death sentence. When HIV became a chronic manageable disease, the narrative changed leaving survivors in the wake. It has to be understood that that generation has survived a historically unprecedented epidemic.
HIV Long-Term Survivors (HLTS) face a myriad of interconnected psychosocial, practical, and medical problems rooted in HIV-stigma, aging, ageism, and economic distress that impacts functional health-related quality of life (HRQoL) issues.
The AIDS epidemic has been a series of sustained traumatic events. We now know that surviving too can also have trauma-related implications. The legacy of our past is having an effect on our lives now, and too many survivors are unaware of what is happening to them.
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.
The effects ASS now presents in combinations of depression, anxiety, emotional numbness, anger, survivor guilt, insomnia, nightmares, hypervigilance, hopelessness, substance abuse, sexual risk-taking, emotional numbness, low self-esteem, avoidance, social withdrawal and isolation, and/or a lack of future orientation.
It is a natural response to complex stress. It is not as simple as PTSD. It often occurs years after the trauma ended. ASS exists on a spectrum and varies by degrees of intensity, and it affects long-term survivors differently at different times.
Healthcare practitioners do not look for ASS among older clients thereby missing the bigger picture and impacting the quality of care survivors receive. They treat individual symptoms without seeing the larger dynamic at play.
Often hidden behind an angry mask is a person terrified by the idea of growing old after decades not imagining it would happen.
We need to let our tribe know the problematic feelings people are experiencing are authentic and legitimate and that they are shared by many of us. We need to inform the people charged with our healthcare that underneath our depression may lay a forest of co-occurring psychological symptoms that are easily misunderstood. There is an urgent need for cultural competence training for everyone working with older individuals with HIV including trauma-informed care with an awareness of the experiences of the early days of the HIV epidemic.
There are a substantial number of women HLTS who are too often left out of the current HIV discourse. Trauma-related issues specific to women include intimate partner violence. Particularly vulnerable are trans women and women of color. Medications are most often studied in men; few have been conducted on dosing women.
As survivors age, we tend to isolate. Those living longest with HIV pull away just when we need to lean in and lean on our community. If we still have any semblance of a community left after so many extraordinary losses, we must make every effort to build new social networks that were once the hallmark of our response to HIV.
Living in isolation makes finding a sense of meaning and purpose difficult. It adds to our feelings of invisibility. Isolation accelerates depression to breed overwhelming despair that sometimes can be and may lead to suicide. Survivors sometimes also feel a sense of guilt that they lived when so many of their loved ones and community died.
HIV-related stigma remains an onerous, hideous problem. Stigma resulting from fear of contagion has morphed into laws criminalizing sex with HIV-positive individuals. Combating stigma requires employing active, multipronged strategies, not just simple slogans.
To battle it we need to reject stigma and strengthen empowered networks of long-term survivors. The more visible we are, the stronger we combat stigma. Being HIV positive is nothing to be ashamed of — it has never been. Many feel they did something wrong to contract HIV. They didn’t. Shame can’t hide in the light.
Though disclosure for some, especially HIV-positive women of color and transwomen can be especially perilous. But when it is safe, we need to stand bravely in the light and not hide our HIV-status.
The face of stigma may be changing now due to the new prevention options: Pre-exposure Prophylaxis(PrEP), Post-Exposure Prophylaxis (PEP), Treatment as Prevention (TasP) have joined condoms in the new prevention toolbox. Making condomless sex, safe and opening the door to a kind of connectedness possible before HIV made sex fearful.
Long-term survivors can set as their goal to get and stay undetectable because without a detectable viral load there is zero risk of HIV transmission. This information is liberating for those of who recall when we were not sure what safe — sharing razors or toothbrushes.
In this new era of sexual liberation, the stigmatized may well become the ones have not tested and did not know their HIV status. We need to make HIV testing as routine as testing for cholesterol and CBC.
HIV Long-Term Survivors are now encountering ageism. We never imagined we’d live long enough to that face that “ism,” so it is challenging when it occurs. It is too easy to feel invisible and useless in a youth-obsessed culture. But, again, we do not have to participate. Much of ageism has to do with our perception. The majority of people living with HIV in the US are over age 50. We must make an effort to acknowledge one another and not treat each other as invisible and yet any older adult has felt the sting of invisibility.
People who were once courageously at the forefront of activism years ago are now feeling invisible as we age. Since many individuals with HIV have returned to health, the community has shifted its priorities. The assumption is that we have regained our physical well-being and no longer need support, attention, or resources, that we have new medications and are doing fine. That is far from our lived reality.
There’s an urgent need for affordable, culturally-aware mental health services from professionals who understand our rich, complicated histories as well as the possibility of trauma. We need to ensure that the peer-to-peer support services that have long been a staple of HIV stay focused to the changing realities of older individuals with HIV.
HIV Long-Term Survivors never imagined living long enough to reach “retirement age” and many if not most have no money saved. For years retirement was a euphemism for being on disability. Often survivors live below the poverty level crippling their ability to be engaged citizens of the world. For many that only gets worse after they reach 65. If they have been on disability for years (or in some cases for decades), the future looks frightening. Without “paying into the system” they only qualify for the minimum Social Security benefits once they reach retirement age.
Supplemental Security Income (SSI) is antiquated and in need of major reforms. Social Security Disability (SSDI) income is not enough to live on. Our options are limited. Living month-to-month and not living well are the soul-crushing reality survivors face today. Survivors on private disability programs are often treated as suspect and forced to prove ongoing disability to insurers. We are guilty until proven innocent because our disability is often invisible. That suspicion creates stress that affects healthy aging.
The long gaps in our work histories and lack of skills to work in the modern digital world present a high hurdle to reentering the workplace. Combined with ageism, returning to work for the majority of survivors nearly impossible. Even survivors who have remained working are ineligible to purchase long-term care insurance, making their financial future distressingly precarious.
In urban settings, the lack affordable housing impacts our lives and our ability to stay in treatment. Many people are isolated from biological families and have lost many of their families of choice, lovers and friends, and therefore face these challenges alone.
Long-term care is only available to those of financial means and not those living on disability incomes. It will be up to the community to care for older individuals with HIV.
It takes a compassionate, caring tribe to grow old. It will be up to us to care for each other—again. We are the generation who know how to do this.
Pre-HAART survivors and Post-HAART survivors are separate, distinct cohorts with overlapping but different medical and psychosocial needs.
HIV and Aging are not a monolith. HIV Long-Term Survivors age faster and differently. They may have multiple drug resistances, resulting in limited treatment options (known as salvage therapy) and physical damage from long-term HIV infection. They are also very likely to have taken earlier, less effective medications, which caused things like neuropathy and cardiovascular disease. Multimorbidities and comorbidities result in polypharmacy that impacts treatment adherence and optimal care.
In short, HLTS require more specialized care that is highly integrated. Aging with HIV is very complicated and needs innovative treatments, research, and programs focused on an older population. Treating everyone who is aging with HIV as a monolith overlooks the differences between the cohorts.
We know both populations may struggle with AIDS Survivor Syndrome. But the medical differences matter to our longevity and well-being.
For decades we have lived with Stress that would break the hardiest of people. Untreated and often hidden stress
can become a killer. Unfortunately, many survivors self-medicate with alcohol and substances that do more harm than good. We need to revisit proven, healthier ways to deal with stress.
Long-term survivors are once again on the medical frontier, facing accentuated aging and increased frailty before our time. Multimorbidity factors like Hep C, diabetes, increased cardiovascular disease and strokes these and other HIV-related ailments all present a complicated medical situation that continues to have a devastating impact on survivors’ health. It is well known that ongoing gastrointestinal problems occur early in HIV infection and many long-term survivors live with debilitating neuropathy. We take handfuls of pills that are confusing. It is called “polypharmacy.”
Contradictory and ever-changing predictions about our life expectancies are enough to make our heads spin. We survived the odds before so must remember that as we age. #ItIsStillNotOver
In the U.S., the majority of people living with HIV are over 50. By 2020 that percentage will soar to 70%. Aging is the new face of HIV.
There is an urgent need for understanding of the scientific and medical complexities associated with the biology of HIV and aging. We need more research that requires ongoing and sustained funding as well as stronger leadership on LTS issues.
We face a crisis in long-term health care sensitive to long-term survivors. Let’s Kick ASS was formed to raise awareness about the invisible but very real effects of AIDS survivor syndrome and posttraumatic stress. However, raising awareness is not enough. The reason for our formation was to overcome ASS so that we can make the next decades the best they can be.
HIV Long-Term Survivors often have a hard time wrapping our brains around the idea of a future. Decades of believing that that our lives would be cut short have trained us not to consider “what if”, yet here we are facing the conundrums of midlife and aging with HIV.
Ours is not a movement simply about nostalgia, pain and grief. It is also a testament to the resilience of the human spirit, to humans who rolled up their sleeves and refused to accept our death sentences.
The result of that resilience is we are living longer. It presents tremendous opportunities and our calls on us to be creative, compassionate and passionate. If you are not yet in touch with the idea that you are resilient, it is ok. You have to notice it for it take root. If we stop focusing on all the times we nearly died and the loved ones we lost but recall instead at how we got back up, how you survived. That begins to change our perspective.
We need a more nuanced view of resiliencies and focus on the ways to increase resilience as we age. Additionally there are we have many positive elements to survival that come with maturity like positive coping skills and resiliency. By framing our survival in a positive light and see our stories as rich that enables use to see an adversity as an opportunity to grow free of survivor guilt and invisibility.
It becomes important for those who survived to tell our stories, to speak our truth with compassion. Our legacy rests in our hands. We must write new, more accurate narratives that reflects the complexity of our history and the richness of our lives ones that honor our past, but does not weigh us down in it. Our histories are more than simply our histories, because the stories we tell ourselves about our survival are an important part of the healing of our lives. Our stories hold the key to richer, fuller lives. Re-writing our stories are vital to our survival.
We must engage in intergenerational dialog in a meaningful, respectful conversation that stresses our example of resilience and survival as well as our struggles then and now, while respecting others battles with HIV. The generations we have much to learn from each other. We were busy taking care of each other and ourselves and were unable to be the mentor they needed. Let’s make up for
We find ourselves underrepresented in the decision-making AIDS institutions, boards of directors, or executive positions, reminiscent of the earliest days of AIDS. Yet we have the knowledge, experience and wisdom to make a meaningful contribution to the discussions and programs affecting our lives. This requires long-term survivors to speak up and demand a seat at the table. Not just an advisory board for show, but meaningful inclusion about matters related to our lives.
We must battle against cynicism, judgment and infighting because we are all in this together. We need the most creative ideas for tactics and strategies for healthy aging and what it means to live a good life. We will no longer be ignored as we empower each other and ourselves to find meaning and purpose in the aftermath of the HIV epidemic. We assert our right to return to work, volunteer, and be involved productively in society.
It is critical that AIDS survivor syndrome (ASS) and the effects of Complex PTSD be treated, understood and studied. We know enough to know the phenomenon is real. While we see it among our cohort every day. We are the catalysts to creating change.
In the quest for the End of AIDS, the lives and experiences of those longest affected by the epidemic must be prioritized, not minimized or ignored. It is now time to become fully engaged elders, teachers, and leaders. We’ve learned valuable lessonsabout survival and community empowerment that implores us to share it with the world.
The realities of the older generation are excluded from the decision-making bodies as younger, well-intended, often HIV-negative individuals have taken the helm at HIV service organizations. They are ill-equipped to provide services to the now majority of those living with HIV. We must insist that providers of all stripes, including aging providers, become culturally competent so that our needs and issues are placed front and center.
We must come together to defeat the twin scourges of stigma and ageism. Studies suggest the best approach to reducing stigma is focusing on personal contact, education, and empowerment. It also happens when we refuse to be shamed. We must revisit the idea of empowerment and what it means now. We reduce stigma by building strong connected networks of long-term survivors. We owe that to each other by working together and being strong in the places we hurt most.
If our history teaches us anything, it is that when we come together we can make a difference in peoples’ lives. With courage and compassion, we strive not only to survive HIV but also to thrive into full, meaningful, productive, independent and connected lives. We want to continue a respectful conversation among peers and educate the world about the existence and power of survivors. The power of a grassroots movement is that it is from the bottom up not the top down
This declaration is a call to action for ideas, dialog, solutions and action for long-term survivors and those aging with HIV. Use what you want to of this document to help create dialog and action. We do not have the luxury of time. This is urgent that we improve the lives of survivors. We must shift the conversation from surviving to thriving. We must now come together and focus on healthy aging with HIV. It is time to embrace our resiliencies and state that we are HIV-resilient. Our work will continue as long as there is one isolated survivor left in that lonely room. This take all of us working together to make our vision a reality.
UNDETECTABLE = UNTRANSMITTABLE
HLTS need to know that people who maintain an undetectable viral load cannot transmit the virus to others. The science is clear: Undetectable=Untransmittable. When you’re undetectable, you both protect your health and prevent new HIV infections.
Let’s Kick ASS is a grassroots movement of HIV long-term survivors both positive and negative devoted to empowering Long-Term Survivors. We’re based in San Francisco and have chapters in Portland, OR, Palm Springs, CA and Austin, TX and are rapidly expanding.
If you are interested in starting a Let’s Kick ASS chapter in your area, please contact Tez@LetsKickASS.org.
Watch our Public Service Announcement: http://letskickass.org/video/
June 5 is HIV Long-Term Survivors Awareness Day. It is an international day to spotlight HIV Long-Term Survivors needs, issues and dreams. We are changing the dialog from surviving to thriving with HIV.
Learn more at HLTSAD.org | Twitter @AIDSsurvivorsFacebook:https://www.facebook.com/HIVLongTermSurvivorsAwarenessDay
Yours in resilience,
Tez Anderson, Founder Let’s Kick ASS—AIDS Survivor Syndrome
Tez Anderson is an HIV long-term survivor living in San Francisco. He also sits on ACRIA’s ROAH 2.0 Research Advisory Committee and the HIV and Aging Committee of the LTCCC. He was named one of POZ 100 of Long-Term Survivors making a difference. Follow him on Twitter @TezAnderson.