HIV Long-Term Survivors Declaration A Vision for Our Future

HIV Long-Term Survivors Declaration vision-for-our-furture Download PDF here: Vision for Our Future LTS Declaration

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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.

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.

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. We are based in San Francisco. If you are interested in starting a chapter in your area please contact us at

Find us on the web at | Twitter @LetsKickASS_org


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

We’ll be at the US Conference on AIDS in Washington, D.C.  September 10-13 VISIT US AT BOOTH #213.


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.

 Published September 4, 2015 for the United States Conference on AIDS.

Read this on Medium 

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

AIDS survivors struggle with having a future

By Andrew Bowen

Half of those living with HIV in the US will be over 50 by 2015. Many long-term survivors never expected to live so long and are struggling with symptoms of post-traumatic stress. Andrew Bowen reports from San Francisco.

Tez Anderson smiles as he greets a small group of friends at Church Street Cafe in the Castro, San Francisco’s historically gay neighborhood. It’s Saturday morning, and his activist group is holding its weekly social meet-up.

“It’s a very informal gathering, no agenda topics, we just hang out and chat,” says Anderson. “It’s a purely social time for everybody to hang out and discuss whatever’s on their minds.”

Read the rest of the story here on Deutsche Welle’s website (It is German but in English):


Andrew also did this amazing “Distillations” podcast

Listen to it here: Life with HIV: Success without a Cure? 

Thirty years ago an HIV diagnosis was a death sentence. Today, sophisticated drug cocktails known as highly active antiretroviral therapy, or HAART, have dramatically changed the fates of people with the disease.

Yet in many ways we’re treading water: each year the U.S. sees around 50,000 new HIV cases, and estimates show that 20-25% of these people don’t know they’re infected. And, while the drugs are effective, many people throughout the world can’t afford them.

So should we consider our response to HIV a complete success story? This episode of Distillations tries to find the answer.

Our journey begins in San Francisco’s Castro District, the epicenter of the city’s HIV epidemic in the 1980s. Reporter Andrew Bowen talks to AIDS activist Tez Anderson, who started an organization to combat AIDS Survivor Syndrome.

Then we talk to Dr. Mark W. Kline and Andrew P. Rice, a physician and a virologist who have been working on HIV since the 1980s, and ask them if we can claim victory.

Staying Alive SF Bay Guardian

The year just past was an amazing year. Here is one of the pieces written about Let’s Kick ASS and me.

Staying Alive was published in the San Francisco Bay Guardian on 3/4/2014. It written by By Kate Conger.

By all accounts, Tez Anderson shouldn’t be alive today. When he contracted HIV in 1981, doctors gave him only two years to live. Somehow, he managed to outlast that prognosis by three decades.

“People ask me how I’m still here, and honestly, I don’t know,” he told the Guardian during an interview in his small office above Harvey’s Restaurant in the Castro. “I would get these little reprieves — two more years here and there — and I just got used to living like that.”

Muscular and energetic, Anderson has a surprisingly light-hearted demeanor for someone who has lived with death for his entire adult life, but there’s no denying that he has been through a severe and sustained trauma.

By 1992, AIDS had killed more residents of San Francisco than all four major wars of the 20th century combined. As a result, Anderson watched an entire generation of his friends — people whom he cared for and loved — succumb to the virus.

The loss has taken its toll. For years, Anderson suffered from severe anxiety, deep depression, and rage. At times he even considered suicide. While driving the windy hills of San Francisco, Anderson would occasionally imagine letting go of his steering wheel, sending his car careening down the hill.

“I was planning it out so that it would look like an accident,” he said. “I didn’t want people to be hurt by the fact that I killed myself.”

Like Anderson, many AIDS survivors suffer emotional ailments akin to post-traumatic stress disorder or survivor’s guilt. Walt Odets, a Berkeley-based psychologist who has worked with hundreds of gay men who lived through the AIDS epidemic, is convinced that a mental health crisis is unfolding among long-term HIV survivors.

“There’s an inability to live with vitality, to live with richness, to get up in the morning and feel like you have a future, if only for the day,” he told us. “We’re losing a lot of vital lives over this.”

Anderson believes that many AIDS survivors have a definable psychological syndrome. Last January he decided to give it a name: AIDS Survivor Syndrome, or ASS for short (the acronym was intentional). He and two friends, Michael Siever and Matt Sharp, have since formed the group Let’s Kick ASS.

Every Tuesday, they host a meditation class, and on Saturdays they convene at the Church Street Café for coffee and conversation. On the third Wednesday of each month, the group puts on large workshops and forums.

Just like during the 1980s and 1990s, when HIV-positive people built a social movement around AIDS, Let’s Kick ASS is trying to unite the community in the face of hardship.

“There’s nothing that will take away or fully heal this wound,” said Gregg Cassin, who has had HIV since the 1980s and works closely with Let’s Kick ASS. “But as we learned from the early days of the epidemic, coming together as a community is where the healing takes place.”


On a warm evening last September, Anderson hustled to set up tables and chairs in a large event space at the LGBT center on the outskirts of the Castro. It was the first town hall meeting for Let’s Kick ASS, and he had no idea what to expect. At most, he thought that 50 people would show up.

At around 6:30pm the first guests started to arrive. Then a few more people trickled into the room. By 7pm, every seat in the house was taken, and people were wedging into any available nook and cranny. Some of the attendees hadn’t seen each other in years and were hugging each other.

“I was blown away by how many people wanted to hear about the group,” Anderson recalled. “It felt like a class reunion.”

In the end about 225 people — almost all HIV-positive men over the age of 50 — came to the town hall. People shared stories from the past and discussed how to support each other in the future. Siever noted that many of those who came to the meeting had lost touch with the broader gay community.

“We opened up a space for them to come together that needed to be opened up, but wasn’t there anymore,” he said. “It was, and still is, amazing.”

It may seem odd that only now, more than 30 years after the Center for Disease Control first reported HIV in the United States, survivors are showing symptoms of severe emotional trauma. But such a delay isn’t uncommon; it wasn’t, for example, until the mid-1960s that psychologists first noticed “survivor guilt” among those who lived through the Holocaust.

“Many people believe that after a huge disaster, whether it’s AIDS or something else, it takes about two decades for people to finally get to a place where they’re ready to process and heal,” said Robert Grant, who has studied AIDS since 1982 and is now a researcher at UCSF’s Gladstone Institute. “People are just now starting to figure out what happened to them.”

Processing such a massive loss can cause a host of psychological ailments. Last year the San Francisco AIDS Foundation started a group for aging gay men called the 50-Plus Network. When asked what their “biggest issue” was, an overwhelming majority of the participants said social isolation.

“If you have strong connections with people and they keep dying, pretty soon you pull back,” said Jeff Liephart, senior director of programs and services at the SF AIDS Foundation. “The unconscious sense is, ‘if I create a new relationship, they’re just going to die too’.”

Along with feelings of isolation, Liephart said many AIDS survivors are bewildered by the fact that they survived the epidemic. Being HIV-positive during the crisis years was like knowing you had a time bomb inside of you that could go off at any moment.

“If you’re in a life-threatening situation like that you can’t process stuff,” he explained. “Your brain just won’t let you do it.”


Anderson has spent over three decades fighting HIV. In 1993 — just prior to being diagnosed with AIDS — he had his first opportunistic infection and came down with pneumocystis pneumonia. Several years later his T-cell count dropped to 12, a dangerously low level. Today, Anderson suffers from severe neuropathy in his hands and feet and is technically disabled.

Still, he has the virus more-or-less under control, and in 2005 he decided that AIDS wasn’t going to kill him in the immediate future. This seemingly positive insight triggered a full-blown psychological crisis.

While working on a movie production with an ex-boyfriend (Anderson co-wrote the screenplay for the 2006 movie The Night Listener starring Robin Williams) he became noticeably agitated and was quick to get into verbal altercations. Within a year he had pushed away most of his

9/19/2014 Staying alive


Anderson partially attributes his self-destructive behavior to the realization that he might live into old age, a thought he never considered during his entire adult life.

“I spent so many years planning my own funeral, preparing everyone around me for my death, and I never planned for my future,” he explained. Being so intimate with death does something to your head. It makes you unable to make long term plans.”

Only now, at age 53, is Anderson getting ready to live a full life. When asked about retirement, he let out a chuckle. He has no 401(K), Roth IRA, or contingency plan. Many of his HIV-positive friends over 50 are in a similar predicament, but he’s optimistic that if they come together, they’ll be able to figure out a solution.

Over half of the people with AIDS in San Francisco are older than 50. As a result, AIDS service providers in the city have started paying much more attention to the mental and physical health ailments unique to long-term survivors. In 2012 UCSF started the Silver Project, which offers medical and social services to older people with HIV. The AIDS Foundation runs the 50-Plus Network, and the Alliance Health Project has been running a support group for gay men over 50 for the past five years.

These organizations all do similar work to Let’s Kick ASS, but Anderson believes his group is different in one fundamental way: It’s a nonhierarchical grassroots effort focused on peer-to- peer support. This philosophy was apparent at a recent Let’s Kick ASS town hall meeting, where a group of about two dozen men — mostly older, gay, and white — sat in a circle and shared why they had come to the event.

“I’ve put all of my experiences into a box, and I’m here to open up that box,” one man said. “I’m here to find my community again,” another added. Anderson was quiet throughout most of the meeting, but he chimed in a few times. At one point, he reminded everyone in the room that the space belonged to them.

“We have 20 years until the real curtains fall,” he said, “and we have a chance to make those next 20 years amazing.”

After Anderson made his comments, he sat down, crossed his arms, and listened closely as the group continued sharing its stories. The man, who had recently contemplated suicide, now has a new appetite for life.

“I read Joseph Campbell a while ago, and I remember him saying, ‘follow your bliss’, find that thing that you’re passionate about and do it whatever it takes,” he said. “I’ve found my passion, and now I’m not angry, I’m not depressed, I’m not anxious, I have a happy home life. I’ve found my passion, and I have a community again.”

Download PDF here: Staying alive


Maisonneuve Magazine


By Nicholas Cameron

TWENTY-EIGHT YEARS AGO, Tez Anderson left his apartment in the Castro, walked four blocks to a local clinic and was told he had HIV.

“Going up the hill back home, I remember how vivid the colour of the sky was, how bright the sun was, how green the fennel on the steps to my staircase was … It felt like the world was electrically charged,” says Anderson, now fifty-five. “But the funny thing is that I’ve talked to other people about that day, and a lot of them have similar stories. I guess looking back on it, it was just a form of shock.”

In 1986, Anderson was given between nineteen and twenty-four months to live. Around him, friends were dying fast. “It was like living in a war-zone. You would see people on the street who were hearty one day, and then you’d see them looking a little sicker, and then they’d be on a walker, or with someone, or carrying around an oxygen tank. And then they’d disappear.”

Read the rest at:


POZ September Hero

From a recent issue of POZ

September 2014

Let’s Kick ASS

by Casey Halter

Tez Anderson
Tez Anderson

Tez Anderson, a 55-year-old San Franciscan living with HIV since at least 1983, has been an AIDS activist for decades, including rallying in ACT UP Golden Gate in the 1990s. But five years ago, he had a mental breakdown. It was the culmination of two decades of alienating his friends, falling in and out of depression and completely ignoring his finances and his future.

Looking back, Anderson realizes he was still stuck in AIDS survival mode—and it was driving him crazy. “Every time I took those pills,” he says, “I was reminded of those that I lost.” What Anderson didn’t realize at the time, however, was that he was not alone.

Fast-forward to June 18, 2014, when more than 250 people showed up in solidarity for the first National HIV/AIDS Long-Term Survivors Awareness Day. Organized by Anderson’s new San Francisco grassroots support group, Let’s Kick ASS (AIDS Survivor Syndrome), the event helped bring awareness to the trauma and mental health issues faced by those who made it through the early years of the epidemic.

“We want to end the isolation and help people imagine the future they never dreamed of,” says Anderson, who chose the date as a way to commemorate his fellow fighters; it marked the 33rd anniversary of the Centers for Disease Control and Prevention’s first report of what became known as AIDS.

After a day of planting trees in San Francisco’s National AIDS Memorial Grove, attending survivor-themed talk shows, holding support programs for HIV-positive and HIV-negative advocates, and garnering more than 1,000 Facebook “likes” for the long-term survivors’ movement, Anderson knew he had started something serious.

The vibe, he says, was reminiscent of the old ACT UP but with a modern feel. “People wanted to take action,” he recalls. In fact, the group’s next goal is to get “AIDS survivor syndrome,” which is similar to post-traumatic stress disorder (PTSD), on the mental health map. They want clinical studies and national insurance coverage.

“If AIDS had happened mostly to straight white men, there would probably be AIDS museums in every city of America,” Anderson says. He has a point: So far, AIDS has claimed more American lives than both world wars.

Let’s Kick ASS currently meets in San Francisco for monthly town halls, weekly coffee get-togethers and regular meditation classes. The group is considering opening new chapters in Houston and Portland, Oregon, and is reaching out to cities across the country.

See it online:

So Damn Busy

This site doesn’t get much love. I’ve been so busy. Speaking before a California State Assembly hearing on GBT Aging and speaking at the White House Listening Session at the Hastings Law School. Stay tuned I’m going the updating this site soon.



So I Started This Thing

Called and people noticed. Here is a piece in Instinct Magazine:

Its mission—To build a community for long-term survivors. Anderson says that it’s healing for people to come together and share their stories. “We are living in a future we never could’ve imagined,” he says. “I’m trying to help people imagine it.”

SF Weekly

San Francisco AIDS Foundation BETA feature:

The Bay Area Reporter has done a couple of pieces about the work of Let’s Kick ASS:

You can read the Castro Biscuit account of our first town hall here:

Let’s Kick ASS founder Tez Anderson was in the audience and offered his take. “We need mental health services to focus on the post-traumatic stress that most of the people in this room who are over 50 live with every day,” he stated. “But what we really need more than that is us coming together again.” Anderson explained that one goal of the new organization is to reunite the survivor community and build on its strengths: “We all had years and years of grief and strife and angst and terror, and we’ve come through it. How can we celebrate the resilience of this community? I believe we should celebrate how far we have come, instead of focusing on what we’ve lost and what we’ve given up. Let’s focus on how we can make these next 20 or 30 years the best they can possibly be.”

Sharp agreed and commented that, in addition to comprehensive health care to treat both HIV and aging-related illnesses, “I see the need for the rebuilding of a strong compassionate community where we take care of one another.” Hicks agreed. “People just get so tired, they feel isolated, they stop taking their treatments, and they die,” she said. “How do you help give hope to these folks so they take their medications and they live on? I think it’s through this kind of movement.”

So what will it take to effect these changes? “I’m encouraged right now by the crowd in this room,” said Sharp. “I’m encouraged by what I see with the Let’s Kick ASS movement, which I believe is the new movement of long-term survivors. We’re coming together to try to create some solutions around these problems—and we need people. That’s what it’s going to take.”

2014 is going to amazing!