HIV Long-Term Survivors Declaration: A Vision For Our Future

HIV Long-Term Survivors Declaration

With courage and compassion long-term survivors of HIV strive not only to survive but also to thrive into full, meaningful, productive, independent and connected lives, free from stigma, ageism and discrimination regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socioeconomic circumstance.

Download: HIV Long-Term Survivor Declaration: A Vision for Our Future

We are long-term survivors of the AIDS pandemic, the most devastating health crisis of the modern era. We are all affected by, and many of us are infected with, HIV.

We come from diverse races and ethnic backgrounds, genders, incomes, ages, and physical abilities. We are all impacted differently by decades of living with HIV and surviving the AIDS pandemic.

Since the first instances of “gay cancer” posted in our community in 1981, we rallied together against an indifferent world to care of each other and collectively fight back against HIV. With courage and compassion, we strive not only to survive HIV but also to thrive into full, meaningful, and productive lives. In the face of significant adversity, individually and collectively, we learned that we are resilient.

There are a few definitions of Long-Term Survivor (LTS)

  • 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. Those living longest with HIV have physical and psychosocial implications that are vastly different from those who acquired HIV later in the epidemic.
  • Post-HAART LTS—those who tested past 1996 and living with HIV for over 10 years.
  • There are long-term survivors of a different stripe that are often left out of the discourse. 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 long-term survivors now find our voices muted. Our issues are sidelined by the agencies we helped to form. Conferences devoted to HIV are focused on newer topics while relegating long-term survivors to the sidelines and affinity sessions off the main stage.

Our 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.

Now is the time to reclaim our silenced voices and insure that long-term survivors’ perspectives are not ignored. With talk about the End of AIDS 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%. This is a wakeup 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.

The Challenges 

Long-term survivors face a myriad of interconnected psychosocial, practical, and medical challenges 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 traumatic events. We now know that surviving 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.

The effects of sustained trauma 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.

We call this AIDS Survivor Syndrome (ASS). It exists on a spectrum and varies by degrees of intensity and it affects long-term survivors differently at different times.

It is a natural response to posttraumatic stress (PTS). It often occurs years after the trauma ended. We stand with the movement to Drop the D in PTSD because a perfectly human response is not a “disorder”.

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.

We need to let our tribe know the problematic feelings people are experiencing are authentic and legitimate and that they are shared by many among 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.

Often hidden behind an angry mask is a person terrified by the idea of growing old after decades not imagining it would happen.

There are a substantial number of women long-term survivors who are often left out of the current HIV discourse. Trauma-related issues specific to women include intimate partner violence. Especially vulnerable are transwomen and women of color. Medications are most often studied on 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 can breed a despair that can be devastating and may lead to suicide. Isolation increases the tendency toward depression. Survivors also feel a sense of guilt that they lived when so many of their loved ones and community died.

HIV 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. Being HIV positive is nothing to be ashamed of—it never has been. 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 more visible we are the stronger we combat stigma.

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) has joined condoms in the new prevention toolbox that has that added potential for reducing stigma is opening the door to a kind of connectedness possible before HIV made sex fearful. In that environment, the ones being stigmatized may well become the ones who do are not testing and do not know their HIV status. We need to make HIV testing as routine as testing for cholesterol and CBC.

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 own perception, given that the majority of people with HIV are older. 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 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. Those assumptions however are 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 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.


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. It doesn’t allow for saving of more than $2000 in assets. As if it were possible to save on a limited income. 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 disability are 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 work place. 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 “logical families”, 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.


Our ongoing economic distress is correlated with poorer health outcomes and impacts our ability to get to and stay “undetectable” or virally suppressed. Treatment as prevention (TasP) is an important component in the Getting to Zero campaigns, yet getting to undetectable attainable for those without the means and determination. Class, race, gender, access, and poverty remain barriers to the goal of getting to undetectable.

Detectable or not, survivors are dealing with accelerating aging from persistent inflammation. We have ramifications from years taking medications that were often ineffective as well as toxic. In those years before highly effective antiretroviral therapy (HAART) combination therapy was available many individuals took mono therapy and built resistance. Today many long-term survivors are on “salvage therapy” and are left with limited drug options.

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. Comorbidities factors like Hep C, diabetes, increased cardiovascular disease and strokes these and other HIV related ailments all present a complicated medical situation that continue 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. Contradictory and ever-changing predictions about our life expectancies is enough to make your head spin. We survived the odds before so must remember that as we age.

In the U.S., the majority of people living with HIV are over 50. There is a strong 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.

vision for our furture

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.

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 that 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.

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. The generations we have much to learn from each other.

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 PTS be acknowledged, evaluated, 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 lessons about 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 for additional 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. Our work will continue as long as there is one isolated survivor left in that lonely room.

Download and share this PDF “Vision for Our Future” here:  Vision for Our Future LTS Declaration.

Let’s Kick ASS is a bona fide grassroots movement of long-term survivors both positive and negative to defeat AIDS survivor syndrome and raise awareness about what it means to be a long-term survivor. We have chapters in Portland, OR, Palm Springs, CA and Austin, TX and are rapidly expanding. We are based in San Francisco.

If you are interested in starting a chapter in your area, please contact us at

Coming soon a toolkit to help you start a chapter:

Find us on the web at: |Twitter: @LetsKickASS_org | Facebook: and Instagram:

See our Let’s Kick ASS PSA here:

June 5 is National HIV/AIDS Long-Term Survivors Awareness Day. It is a day to spotlight long-term survivors and our issues. Theme for 2016 is We Are #HIVResilient.

Find us on the web at  | Twitter @AIDSsurvivors |


You can also read this on Medium Discussion on Reddit:

Final version written by Tez Anderson, founder of Let’s Kick ASS from data that was complied from the large community of long-term survivors in San Francisco and around the country. Tez also on ACRIA’s ROAH 2.0 Research Advisory Committee. 

Let’s Kick ASS will be at the US Conference on AIDS in Washington, D.C.  September 10-13 VISIT US AT BOOTH #213.


Let's Kick ASS logo_CMYK, hiv resilient ai

Download and share this PDF “Vision for Our Future” here:  Vision for Our Future LTS Declaration.

NHALTSAD Event At San Francisco City Hall June 5

National HIV/AIDS Long-Term Survivors Awareness Day was plugged on! Click here to read it:

Last year on National HIV/AIDS Long-Term Survivors Awareness Day, our pals at the HIV Story Project set up the Generations HIV Interactive Video Storytelling Booth at the AIDS Survivors’ Summit at the LGBT Center to record video testimonials about long-term survivors experiences with HIV/AIDS. Many of you have asked me what was happening with all those videos.

Well, I’m excited to say that this NHALTSAD, Let’s Kick ASS is proud to co-present the LAUNCH of the HIV Story Project’s GENERATIONS HIV ONLINE VIDEO ARCHIVE at San Francisco City Hall on Friday, June 5th, 2015.

PLEASE JOIN US! Because #EverySurvivorCounts and our stories matter.

Press Conference

9:30 AM: Launch events will commence with a press briefing on the Polk Street steps of San Francisco City Hall with remarks by: San Francisco Supervisor Scott Wiener (District 8); Marc Smolowitz, Executive Producer, The HIV Story Project; John Cunningham, Executive Director, National AIDS Memorial Grove; Tez Anderson, Founder, Let’s Kick ASS‑AIDS Survivor Syndrome; Rev. MacArthur Flournoy, Director of Faith Partnerships & Mobilization, Human Rights Campaign and other community representatives will be announced.


10:00AM – Reception and Live Website Demo, San Francisco City Hall, Room 238

Visitors will be treated to continental breakfast and a live demo/presentation of the newly launched online video archive: (Do not be freaked out when you click that link and nothing comes up. It is going live on June 5! It is not a snafu. This is a heads up.)

The launch of the archive has been timed to coincide with National HIV/AIDS Long-term Survivors Awareness Day!

Over the past five years the HIV Story Project has staged the booth over 10 times at various locals. On June 5th you get to see the 500+ videos for the first time. HIV Story Project will officially launch the world’s most comprehensive online video platform about HIV/AIDS that will feature 1,000+ stories and testimonials by the end of summer 2015.

#NHALTSAD #EverySurvivorCounts #AIDSLongTermSurvivors #AIDSSurvivors #BePartOfYourFuture

generations HIV

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

Second annual National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD)


San Francisco, CA—The second annual National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD) is Friday, June 5, 2015. Let’s Kick ASS—AIDS Survivor Syndrome created the awareness day in 2014 to recognize and honor those living longest with HIV. NHALTSAD spotlights the present-day intricacies of survival while aging with HIV. It also stresses the importance of keeping those older adults without HIV from acquiring it.

This year’s theme is Every Survivor Countsbecause many long-term survivors feel forgotten and invisible. Most survivors are isolated and are coping with psychosocial effects long-term survival including depression, hopelessness, and AIDS survivor syndrome (ASS). Now they are also dealing with poverty, ageism and a lack of meaning and purpose because they had the audacity to survive. #EverySurvivorCounts is a reminder to survivors that matter. It is also about raising awareness that tens of thousands are surviving AIDS. They are every gender identity and sexuality—lesbian, gay, transgender and straight. They are all ethnicities and they survived the darkest days of the AIDS epidemic with courage and compassion and as individuals and a community, survivors exhibited strength and resilience they didn’t know they possessed.

National HIV/AIDS Long-Term Survivor Awareness Day is held annually on an important anniversary. On June 5, 1981 the CDC’s Morbidity and Mortality Weekly Report (MMWR) published a brief account of five young gay men diagnosed with Pneumocystis carinii pneumonia (PCP), indicating signs of severely compromised immune systems. It was the beginning of AIDS awareness before it was known as HIV/AIDS.

Let’s Kick ASS — AIDS Survivor Syndrome (LKA) is the lead sponsor and organizer the annual AIDS observance day. LKA is a national grassroots movement of long-term survivors, positive and negative, honoring the unique and profound experience of living through the AIDS epidemic. It is the largest and most dynamic organization of it’s kind engaging stakeholders to better understand the challenges and the solutions while encouraging them to take action to optimize survivors’ lives.

We encourage groups everywhere to begin planning events in your cities and towns now. Make them your own but honor long-term survivors. They deserve it.

Then send us the what, when, where, why, and who the event is for and if it is free or low-cost. We’ll add you to the official calendar. Send your listing or questions to: 

Twitter: @AIDSsurvivors

Social Media Hashtags:

#NHALTSAD #EverySurvivorCounts  #AIDSLongTermSurvivors #AIDSSurvivors #BePartOfYourFuture

Let’s Kick ASS can be found at



 The lead sponsor and organizer of NHALTSAD is

Let's Kick ASS is the lead sponsor


Why June 5?

National HIV/AIDS Long-Term Survivors Awareness Day is held annually on June 5th on the anniversary of the first published report of what came to be known as AIDS.

On June 5, 1981 the CDC’s Morbidity and Mortality Weekly Report (MMWR) published a brief account of five young gay men that had been diagnosed with Pneumocystis carinii pneumonia (PCP), indicating signs of severely compromised immune systems. The account sent huge shockwaves throughout the LGBT community and eventually, around the world.

A Day to Call Our Own

An AIDS survivor on the launch of National HIV/AIDS Long-Term Survivors Awareness Day on Thursday, June 5, 2014. This piece was published in POZ magazine on May 22, 2014

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

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

It is time to change this pervasive social amnesia.

On May 25 HBO premieres the film version of Larry Kramer’s play The Normal Heart set in the early days of the plague. Eleven days later, on June 5, Let’s Kick ASS—AIDS Survivor Syndrome is starting the first-ever National HIV/AIDS Long-Term Survivors Awareness Day (NHALTSAD). That day is the 33rd anniversary of the first CDC announcement of AIDS.

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

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

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

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

I know this because my journey as a survivor involved a very dark time that I now recognize as trauma-related. This low point came nearly 10 years after protease inhibitors and highly active antiretrovirals (HAART) changed the face of the epidemic. After surviving AIDS for 25 years (I became HIV positive in 1983), it was ASS that nearly killed me. Instead of thriving after my health stabilized, I became unglued. I thought I was going crazy. Nothing made sense. It felt like I was trying to catch a waterfall with my hands. I had way more questions than I had answers.

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

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

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

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

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

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

We’ve earned it.

Tez Anderson is a long-term AIDS survivor and the founder of Let’s Kick ASS. He lives in San Francisco.