Tez Anderson has been an advocate for gay rights and HIV survivors since the 1980s, and he went public about his HIV status decades before it became routine to do so. He has written for Time, co-written a screenplay with Armistead Maupin, and was a creative consultant for the original Tales of the City television mini-series. Sir Ian McKellen has personally credited Tez with helping him to come out as gay. In recent years, however, his work has been focused on illuminating the issues surrounding HIV and aging.
In 2013, Tez founded Let’s Kick ASS – AIDS Survivor Syndrome, “a grassroots movement empowering HIV Long-Term Survivors” that aims to “reclaim our lives, end isolation, and envision a future we never dreamed we’d live.” The following year, he launched a related initiative: HIV Long-Term Survivors Awareness Day, which takes place every year on June 5. This past week, we sat down together for a Zoom conversation about his work, and he also shared his thoughts about Larry Kramer, who died on May 27.
JM: Tez, thank you for taking the time to speak with me. Tell me about HIV Long-Term Survivors Awareness Day. What is it, and how did it get started?
TA: I started HIV Long-Term Survivors Awareness Day in June of 2014. I had started Let’s Kick ASS in 2013, and was very involved in doing long-term survivor work when no organizations were focused on it, and I wanted to increase the visibility of it. I mean, the statistics are, 24.5% of people living with HIV in the U.S. are people who seroconverted before 1996. That’s important, because in 1996, protease inhibitors and combination therapy came out, and changed HIV from a death sentence to a chronic but manageable illness.
I’ve lived with HIV since 1983, so I lived for many years without medications, and spent years planning to die. And when I realized that I was going to be an old man with HIV, it freaked the hell out of me. I hadn’t planned for it. I didn’t save money for retirement. I didn’t do all the normal things that people outside of our subculture do. And my generation was not visible. One of the things about aging in general is you become invisible, especially in the queer community. So Let’s Kick ASS was really about bringing visibility to an older population who had also lived through the trenches of AIDS.
Then I felt like we needed a day to focus. I chose June 5th for HIV Long-Term Survivors Awareness Day because June 5, 1981 was the day that the CDC announced the first case of what would become known as HIV/AIDS. So as you look at any history of HIV, that’s the beginning date, and it felt like a good way to commemorate how long this journey has been. And for those of us who did not have one-pill-a-day treatments, and didn’t have access to medications for a long time, our experiences needed to be brought into the public sphere.
JM: What’s your focus for 2020?
TA: This year, the theme is “Not Our First Pandemic.” When COVID became such a big deal in San Francisco, it was the first city in the nation to shut down and shelter in place. So we got news of it first, and changed in a day. And there were some very minor parallels to HIV. But it just felt like it was important not to go into this without acknowledging COVID, and the reality we’re living in now. So this year is about getting people together, but it’s going to have to be virtual.
JM: What are some of the issues that long-term survivors are dealing with now?
TA: Many of us who went on the first available medications got long-lasting side effects, so our bodies are different. We are aging in accelerated ways. Our bodies have been full of inflammation for such a long time that we have heart disease, brittle bones and arthritis, and other things. I’m 61 now. If a 35-year-old was put in my 61-year-old body, they’d think, “how the fuck do you live?” I feel like I’m 75 some days, just with the fatigue and the ups and downs.
JM: I read on your website about the psychosocial aspects of what you call “AIDS Survivor Syndrome,” and being sidelined by the medical profession, and just the general lack of acknowledgment of the fact that over half the people living with HIV in America are 50 and older.
TA: Yes, exactly. The psychosocial aspect of this, and the disconnect between aging and HIV is the reason I started Let’s Kick ASS. “AIDS Survivor Syndrome” is an expression that I coined because, about 15 years ago, I went through a period where I felt like my life was coming apart. I was pissing everyone I knew off. I couldn’t sleep. I was having nightmares. I was jumpy. I was angry. It was not a good period. And it was about this slow creeping notion that I was about to turn 50. I hadn’t planned for it, and wasn’t prepared. And after four years of hell, and losing all my friends – not to death, but because I was too angry for them – I realized, oh, this is called trauma. This is called trauma from expecting to die for 30 years, and losing all of your friends three times over, four times over. It all kind of built up.
So “AIDS Survivor Syndrome” describes that experience that I did not have a name for and that no one was talking about. A large portion of us – not all of us, but a lot of us – are traumatized. And we have to acknowledge it in order to deal with it and move past it, and live our lives. So for me, it wasn’t about staying in the past. It was about acknowledging the past, and carrying it, lightly, into a new future that we never dreamed we’d live.
JM: As you know, Larry Kramer died [the day before this interview]. Would you please share some of your thoughts about him?
TA: Without Larry Kramer, I would not be an activist. I wouldn’t be an empowered patient. I wouldn’t be alive if it were not for Larry Kramer. His influence was not just on HIV, but all medicine. I mean, the idea of a patient being part of the process, and getting drugs developed. That was totally from ACT UP and Larry’s intervention.
I came out as HIV positive in both People and Time in 1990. And one day I got a call from Larry. He asked me: “What are you doing about AIDS out there [in San Francisco]?” I said, “I’m living with it, Larry.” He was a cantankerous old cuss. He was sex-negative, which drove me insane. But he changed the world. He brought the patient’s voice into the room, and demanded that the medical profession listen. He changed everything. So I owe my life to Larry Kramer, even though I didn’t always agree with him. He wouldn’t mind that. He was the kind of person that would yell at you one minute, and say “I love you” the next. That was just part of his personality.
JM: You know, sometimes that kind of personality is required. It takes different kinds of approaches to get things done.
TA: That’s why I started Let’s Kick ASS. One of our taglines is “United in Compassion” [in response to ACT UP’s tagline, “United in Anger”]. I was with ACT UP Golden Gate back in the 90s, and there was so much fighting going on among people, and it kind of drove me crazy. I just wanted to do the work. And so I wanted Let’s Kick ASS to bring people together in a much more compassionate way that also had a loud voice.
JM: So what can other people do? Not long-term survivors; y’all have done plenty. I mean, people in the LGBT community, healthcare professionals, and others. What can we do to help?
TA: Be aware. Not just about long-term survivors, but also about PreP and U=U [Undetectable=Untransmittable]. Those are two big things people need to know about. PreP is a pill you can take to prevent HIV. And U=U means that if you have an undetectable viral load, which is the amount of virus in your bloodstream, you can’t transmit HIV. Those are two things that people need to know.
Fight Isolation. Phone one (or more) survivors or friends. Connect with a person you know who might need to hear you ask “How are you doing? How are you really doing?”
Also, one of Larry Kramer’s contributions was patient empowerment. And I think that one of the things we can all do as individuals is have the balls to have a dialog with our doctor so that it feels like a partnership. I’ve fired a doctor because he wasn’t listening to me. We all need to be able to fire our doctors if we don’t feel they are listening to us.
But really, if I had any wish in the world, it would just be that people be more empathetic. Because none of us know what other people’s lives are like. We think we do, and we act like we do, but we don’t. And empathy is what we need now more than ever. We need to have more compassion for one another.
JM: I couldn’t agree more. Tez, it’s been great having the opportunity to talk with you. Thank you.
TA: Thanks, Jim.