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A Vision For Our Future

A Long-Term Survivors Proclamation
By Lets Kick ASSAIDS Survivor Syndrome

Introduction
This document was created in the spirit of the Denver Principles written in 1983.
They were the beginning of the self-empowerment movement for people with HIV.
If youve not read that seminal document we encourage you to read it or revisit it.
Three decades later, the voices of those living longest with HIV have largely been
silenced by the agencies we helped to form. Survivors have been marginalized.
The effect of this is many of us feel invisible and unheard. As one of our guys said
it feels like our histories are being erased in our lifetimes.
Lets Kick ASS wants to change that. It became apparent to us that we needed a
statement articulating what it means to be a long-term survivor today, something
that reflects our unique and profound experiences.
We also wanted to let our tribe know that the things we are experiencing are real.
This is part of our endeavor to help survivors reclaim our voices and insure that
our perspectives; hard-earned wisdom and complicated pasts are not lost.
This is the beginning of the next 30 years. It is up to us to make them the best
they can be because every survivor counts.
May 10, 2015

Long-Term Survivor Proclamation

Were a diverse group of survivors living with HIV and AIDS (SLWHA) and HIVnegative long-term survivors of AIDS, the worst epidemic of modern time.
We are diverse races and ethnic backgrounds, genders, incomes, and physical and
mental abilitiesall impacted differently by decades of living with HIV and
surviving the AIDS pandemic.
Since the first instances of gay men with KS lesions posted in our community in
1981, we rallied together against an indifferent world to care of each other and
collectively fight back against HIV.
We now face the unexpected reality of aging with HIV. After the decades of illness,
death and caretaking many of us are coping with posttraumatic stress from the
stress. While others experience posttraumatic growth, an increased sense of ones

own strength. We have learned that we are resilient. The paradox of resilience is
that it is also fragile. We are reaching the age where people die from other things
we need to be strong to cope with those losses.
Our numbers are large. Currently half the People Living with HIV/AIDS are age 50 or
older in the United States. By 2020 it will be 70%. There are currently 1.3 million
people living with HIV in the US, that is 650,000 people aging with HIV. This is the
wake up call to demand attention and funding for those aging with HIV. While all
those over 50 were not infected pre-HAART many were.
Survival is about more then living with a virus. If you came of age in 1980s or
1990s then you vividly recall those decades when having HIV was a death
sentence. You recall what it was like to watch your community dying around you. If
you remain HIV-negative but lived through those years you are a survivor of the
AIDS epidemic.
Because of the success of anti-HIV therapy, those of us living with HIV are far
longer than most of us expected. It is our unique survivors paradox that because
we had the audacity to survive we now face with a host of challenges none of us
could have predicted.

The Challenges
Long-term survivors face a myriad of psychosocial, practical, and medical
challenges that are rooted in HIV stigma, ageism, and economic insecurities
survival challenges that now impact functional health-related quality of life
(HRQoL) issues.

Psychosocial
The trauma of having HIV for decades is having ramifications years later. The
legacy of the past is having an effect on our lives now and too many survivors are
unaware that fact.
It manifests in combinations of depression, anxiety, survivor guilt, emotional
numbness, anger, insomnia, hopelessness; substance abuse; sexual risk-taking,
emotional numbness, social withdrawal that leads to isolation, and a lack of future
orientation. We call this AIDS Survivor Syndrome (ASS). It is a result of
posttraumatic stress.
While it is true some survivors are living prolonged, healthy lives free of the
residue of trauma and survivor guilt, few are completely immune.
Many survivors are coping with depression and loneliness. Survivors retreat into
isolation where finding a sense of meaning and purpose in life is difficult. It is often
harder for older individuals to make new friends especially after the multiple losses
weve experienced. Sometimes that hopelessness is so bad it leads to suicide.

Our loved ones whom we lost to AIDS would not want us feeling guilty about our
survival. They would want us to live our lives.
We pull away from community just when we need to lean in to or lean on our
brothers and sisters.
That lack of understanding extends to clinicians and health care professionals. It is
vital that they and the agencies formed to care for people with HIV understand the
state of our mental health in all its complexity.
HIV stigma is remains an onerous, hideous monster. Stigma that once came from
outside society is now also coming from within our own ranks. It maybe changing
with the variety of prevention options opening the door to a kind of connectedness
possible before AIDS made us fearful of sex. There is hope and signs that it may be
lessening now due to the new prevention options. PrEP. PEP Treatment As
Prevention. There is
Combating stigma requires employing active strategies not simple slogans. It
demands that we not accept it, that we fight it along side the virus trying to kill us.
Empowerment is the antidote to stigma, that the more proactively we approach
our health care and build support networks, the less stigmatized we feel. as
writer, activist and survivor Mark S. King puts it.
On top of stigma now we are now encountering some ageism. We never imagined
wed live long enough to that face that ism so it is challenging when occurs. It is
easy to feel invisible and useless in a youth-obsessed culture. Some of this is our
own perception given that the majority of people with HIV are older. And yet weve
all felt it. It is painfully clear that the HIV community has shifted its priorities away
from aging at time when they should be focusing more resources and attention to
the older population. The assumption is that we have regained our physical
wellbeing, and while that may be true for some, there are many who still need
support, attention, or resources.
Theres an urgent need for affordable, culturally aware mental health services from
professionals who understand our history, trauma and our resiliencies. We need to
insure 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 needs.
A wise use of our resources might be on resilience trainingreminding survivors of
the strengths and resilience that it took to survive. It should be a part of paradigm
of aging well. By replacing deficit-based models with asset-based approaches like
teaching a set of skills and techniques that build resilience to alleviate the survivor
guilt and hopelessness so many of us feel. It seems a vital component to helping
survivors prepare for the future most never thought wed have.
It is important for those who survived to tell our stories, to speak our truth with
compassion. Our legacy rests in our hands. No one is going to do it for us. We must
write new, more accurate narratives that reflect the complexity of our history and
the richness of our lives ones that honor our past but does not weigh us down in it.

Socioeconomic
Survivors were on the front lines in the battle against HIV from the beginning, long
term-survivors continue to take punch after punch as we age.
The biggest hit is financial. After decades of disability many many survivors are
living below the poverty line. And the system is rigged. Social security disability
doesnt allow for saving money if it were even possible to on such a limited
income. Turns out, the safety net is also a trap.
For those dependent on social security disability the prospects are much bleaker.
Living month to month and not living well are the soul crushing reality many
survivors are living. Incomes far below the poverty line where
Some survivors that were fortunate to have an income from private long-term
disability plans but they are often treated as suspect and forced to prove going
disability to insurers. They are guilty until proven innocent. It causes a stress that
impacts healthy aging. When these survivors reach retirement age they are going
have significant drop in income as people age out of their plans.
Some survivors seek to return to work only to find that the long gaps in their work
histories and lack of skills to work in the modern work a high hurdle. Throw in
ageism and that makes returning to work many nearly impossible.
HIV stigma is ongoing problem. Stigma that once came from general society is
now also coming from within our own ranks and has morphed into illogical, fearbased laws criminalizing those carrying the virus.
In a youth obsessed culture, rampant ageism that make is hard to find social
support. It affects our for our experience of survival. But one solution is to foster
respectful, intergenerational dialog and creating villages to care for each other.
Long-term survivors have been made to feel invisible as we age. Since many
people with HIV have returned to health, the community has shifted its priorities.
The assumption is that we have regained our physical wellbeing and no longer
need support, attention, or resources. But that is far from our lived reality.
These factors make living full productive lives challenging. We must demand
healthy aging be a priority.
There are some factors we can control. Healthy aging includes not smoking,
staying active, being social, eating better and reducing stress. For decades we
lived/have lived with stress that would break the hardiest of people. It became our
norm. It is it vital that we reduce stress however because stress is a killer.
We find ourselves underrepresented in the decision-making AIDS institutions,
boards of directors, or executive positions, reminiscent of the earliest days of AIDS.
There is little acknowledgement of our experience and expertise as long- term
survivors at conferences, and there is scant research being carried out on longterm HIV survivors.

In many expensive urban settings, the lack affordable housing impacts our ability
to stay in treatment. Many people are isolated from biological families and have
lost many of their logical familieslovers and friends and therefore face these
challenges alone.

Medical
Survivors lower socioeconomic status is correlated to poor health outcomes. Is a
factor in our treatment and health but also treatment as prevention (TasP) and
important component in the Getting to Zero campaigns to end AIDS.
As we were in the early decades we remain the canaries in the coalmines. We are
pioneers on a unchartered frontier facing accelerated aging brought. Conflicting
reports of about our comorbidities and our ever-changing predictions about our life
expectancies is enough to make your head spin.
We face a crisis in long-term health care sensitive to survivors. Long-term care is
only available to those of financial
In the U.S., the majority of people living with HIV are over 50. There is more
appreciation 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.
Countless HIV-negative survivors also have challenges related to the epidemic.
While HIV complications and treatment didnt affect them directly, many
experienced their own AIDS survivor syndrome. They have survived without much
of the care and attention of the HIV- positive community.
In those years before combination therapy many individuals too mono therapy and
built resistance. Today many long-term survivors are on salvage therapy and are
left with limited drug options.
Today, up to 20 % of new HIV infections show increasing resistance to existing
drugs and up to 60 % develop resistance during long-term treatment. We expect
drug resistance will increase even more in the future.
We are impatient because time is of the essence. We want to have our voices
included in the White House Conference on Aging.
We know there are factors we have some control over. The food we eat

A Vision for Our Future

Long-term survivors often have a hard time wrapping our brains around the idea of
a future. Decades of believing that that our future was dim have trained us not
think nor plan for aging with HIV. We must boldly face the conundrums of midlife
and aging, to plan a future that includes our current generation and future
generations of longtime survivors.
We deserve credit for how we stepped up from the start of the epidemic to care for
each other from the start of the epidemic. In the words of writer, activists Sean
Strub, How we came together to love and care for each other was something
remarkable. We showed the world our very best face and what we did then should
be celebrated and recognized as a model, worthy of emulation in many kinds of
situations.

We've learned valuable lessons about survival and community empowerment we

can teach the world at large. As community elders, teachers and leaders we
strive to engage in intergenerational dialog in a meaningful, respectful
conversation that stresses our example of resilience and survival.
We must battle against cynicism the impulse to
Healthy aging requires to improve the aging factors can have some control over.
Reducing stress, getting and staying active, eating better, laughing more, healthy
To that end, it is critical that AIDS Survivors Syndrome (ASS) is recognized,
understood, and studied. However we know enough to know the phenomena is
real. While we see it in others every day, our goal is to be catalysts for gathering
research and data for the betterment of our lives.
Because Every Survivor Counts we must
We demand central leadership in our local and national AIDS service delivery
systems to provide the needed services to treat ASS.
Our collective voice is more important now than ever. Nationally there are
approximately 650,000 people over 50 years of age living with HIV and thousands
more HIV-negative long-term survivors.
We have the knowledge, experience, wisdom, and power to demand representation
in all the decision-making bodies of AIDS organizations, medical institutions, and
government.
Were still here. We will no longer be ignored as we empower ourselves and each
other to find meaning and purpose in the aftermath of the AIDS epidemic maintain
the right to return to work, volunteer, and be involved productive society.
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. The realities of the
older generation are excluded from the decision-making bodies as younger, wellintended, often HIV-negative individuals have taken the helm at AIDS service
organizations. They are ill equipped to provide services to the now majority of
those living with HIV. We must insist that our needs be front and center.
Lets Kick ASS is a national, grassroots network of long-term survivors organized to
face these challenges together and foster dialog. Over time we will develop into a
powerful, insightful voice of long-term survivors to be reckoned with.
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 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.
Gay men have known since the AIDS pandemic began that empowerment is the
antidote to stigma, that the more proactively we approach our health care and

build support networks, the less stigmatized we feel. The answer lies in our. But
our own community challenges us at every turn.

Epilogue
Ours is not a movement simply about nostalgia, pain and grief. It is also a
testament to the resilience of the human spirit; 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.
It takes a village to grow old. If our history teaches us anything, it is that when we
come together we can make a difference in peoples lives. We are now called to do
that for aging with HIV and creating the best older age we can. Together lets
strive to thrive and make our remaining years count. Lets leave a legacy befitting
our journey.
With courage and compassion we strive not only to survive HIV but also to thrive
into full, meaningful, productive, independent and connected lives.
This proclamation was created through listening to a tremendous community of
long-term survivors. Lets Kick ASS engaged a variety of large town halls, smaller
gatherings and through our extensive online reach. is a call for ideas and action for
long-term AIDS survivors.
From the start of LKA weve made it our mission to listen. This proclamation has
gone through many drafts and with much input. We put 100 people in room and
read a draft of it and wrote down the feedback. It was circulated to leaders and
stakeholders. We feel pretty good about this draft. But it is intended to continue a
conversation.
This is the continuation of a community process to improve our collective
understanding of survival and aging. As a blueprint for thought and strategy with
possible solutions over the long-term, this is by no means a final statement.
There is much work to do, and it is up to our community to come together as
always. We recognize that our work will continue as long as there is one isolated
survivor left in that lonely room, afraid once again for his/her life.
For some this proclamation will be too polemic and for other not polemic enough.
There are things weve probably not considered because of our blind spots.
We want to continue a respectful conversation among peers. The power of a
grassroots movement is that it is from the bottom up not the top down. Use what
you want to of this document to help create dialog and action. This is urgent. We
do not have the luxury of time. It is time for action to improve the lives of
survivors.
Lets Kick ASS is a grassroots movement of long-term survivors. Since our first
groundbreaking town hall, we have engaged in dialog with our peers through our
extensive social media outreach and in numerous face-to-face town halls. A bona
fide grassroots movement of long-term survivors has taken root to defeat AIDS
survivor syndrome and raise awareness about what it means to be a long-term
survivor.

Please stay in touch.

LetsKickASS.org@gmail.com
@LetsKickASS_org on Twitter
We are Facebook too AIDSSurvivorSyndrome