June 5, 1981, marks the official start of what is now known as the HIV and AIDS pandemic. That’s because it was on that day that the Morbidity and Mortality Weekly Report (MMWR) first mentioned a then-mysterious disease that was taking the lives of young gay men.
For almost a decade now, June 5 has also been known as the HIV and AIDS Long-Term Survivors Awareness Day, or HLTSAD. Founded in 2014 by long-term survivor and activist Ted Anderson, HLTSAD celebrates “the strength and resilience of people living longest with HIV and AIDS, while highlighting current challenges” and, thus, helping improve long-term survivors’ quality of life.
“HLTSAD is not a one-day event. It is a year-long campaign,” the HLTSAD website also mentions.
Almost a quarter of the people living with HIV in the U.S. are long-term survivors. That’s about three hundred thousand people.
And all of them–long-term survivors, lifetime activists, and also their allies–have stories to share. Here are some of their powerful, riveting stories of loss, of struggle, and also triumph over the virus.
Bob Bowers [A&U, December 2021], a.k.a. One Tough Pirate, is a long-term HIV and AIDS survivor, activist and educator, and the founder of HIVictorious.Inc.
On June 5, 1981—the day that the disease, which would later become known as AIDS, was reported in the Morbidity and Mortality Weekly Report (MMWR)—I was living in a city of under ten thousand people, in Oregon. I was preparing for my high school graduation and future in the Navy.
In 1983, I had just moved to Los Angeles and shared a needle with my girlfriend to inject crystal meth. I was a young heterosexual man, and infection was the furthest thing from my reality. However, due to that one careless act, I too was infected with the deadly virus that was later named HIV. Shortly thereafter, I received a “terminal” diagnosis of AIDS.
After beating the odds of surviving, after losing countless friends from all walks of life to HIV and AIDS, I created my own nonprofit and became a youth educator. As an educator, I spent many years talking to audiences. While we’ve made incredible advances in the fight against HIV and AIDS, living with the virus is still a chronic life-long [task] and not for the faint of heart.
This is my thirty-ninth year of living with HIV. And while my virus remains undetectable, thirty-plus years of medications (at one point sixty-five pills a day) have taken a toll on my body.
Overall, my life is good. I’m one of the lucky ones to have survived. I have a loving life partner, Nita, and a beautiful service dog, Sir Duke. Though I’m now officially retired, I remain committed to living well, educating others, and doing my small part to ensure a world free from HIV. The fight is far from over.
June 5 is a stark reminder that more than forty-one years into the pandemic, we still have no vaccine, no cure, and that infections, stigma, fear, and misinformation persist. The date will forever be a marker of my survival with the disease, and a reminder of the worst pandemic to hit my generation. It is a constant reminder that HIV can still infect anyone.
Victoria Noe [A&U, July 2019] is an ACT UP activist, public speaker, and author of books like Friend Grief series and Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. Her new book, Friend Grief and COVID: Pandemic Stories, will be available in 2022.
When I think of HIV Long-Term Survivors Awareness Day, I think of my friends. I think of the ones who did not have the privilege to be long-term survivors because they didn’t live long enough for effective drugs to help them survive. Every day I think of the ones who are still around, a very diverse group: people born with HIV, now in their thirties; men and women in their fifties and older who face the normal daily challenges of aging compounded by the effects of decades of often toxic drugs and HIV, itself. I see them struggling with facing their second pandemic (COVID). And though Jeff Berry from TPAN convinced me that I’m an LTS, too, (even though I’m HIV-negative) because I was “there” at the beginning, I don’t count myself as a true member of that community.
I see my friends’ isolation, and their justified anger at being ignored not just by society in general, but by a community that often prefers to ignore any reminders of the early days of the epidemic. Ageism is something not talked about enough around HIV and AIDS, and long-term survivors face that every [single] day. We owe them so much more.
Steve Hayes [A&U, April 2017] is an actor and writer living in New York City. Check out his show Tired Old Queen at the Movies, by visiting www.youtube.com/user/STEVEHAYESTOQ
Follow Steve Hayes on Twitter @SteveHayesTOQ
Two years ago, in August, during the height of the COVID pandemic, I lost Stephen Addona, one of my dearest friends of many years. We had grown up in small towns in Upstate New York and gone to college together. We’re both gay, had essentially “come out” together, and left to find and explore gay life in New York City in the seventies. Over the years, our paths took us in different directions, but we always stayed in touch, told each other of our dreams and accomplishments, and laughed at each other’s adventures. By the mid-eighties, our friends started dying, and AIDS took its inevitable toll. My friend contracted the virus in the early nineties, but he never lost his drive, nor his refusal to give in. He was determined never to let AIDS keep him from living life to the fullest. To that end, he helped organize a support group for long-term AIDS survivors, called “Hope and Help” in Central Florida and was the founder and program director, co-facilitator, and chief blogger for RE-START, which “helped educate on living well with HIV, combat isolationism, reward leadership among its members and dismantle stigma in all communities.” He spoke in Washington at the National AIDS Conference and was listed by POZ Magazine as “one of the 100 Most Influential people over the age of 50, making significant contributions to end the HIV epidemic.” A brave man. A remarkable individual and one of the thousands who continue the good fight, who know that the end of HIV and AIDS will come only when the virus has ceased to be a threat to anyone of any race, age, or orientation, and is remembered by future generations as a dark era of history, long past and thankfully over.
Here’s to all those who survive, teach, continue the fight and live productive lives with and despite HIV! Here’s to the heroes!
Tony Beall [A&U, March 2013] is the President and CEO of Mister Nonprofit Consultancy, which in turn is the recipient of the 2012 Small Business of the Year Award presented by the Greater Fort Lauderdale Chamber of Commerce.
For me, June 5, HIV Long-Term Survivors Awareness Day, is an opportunity to honor the change-makers, advocates, and NGOs that fought for the recognition and support needed for there to be any survivors of HIV. It is also an opportunity to ignite hope in those who are newly diagnosed and provide a platform for long-term survivors to share their unique stories of challenges and triumphs.
ROBERTO ORDONEZ HOYO
Roberto Ordonez Hoyo (Rob Ordonez [A&U, January 2017]) is a photographer and actor living in the New York City area.
As an HIV long-term survivor, I feel extremely blessed to be alive, healthy, and living my dreams. I contracted HIV in 1996, and back then, life expectancy was five years, so I ran away from home (Mexico) to New York City in 1999 to live the rest of my life to the fullest.
To my surprise, today, I’m fifty years old, healthy, fulfilled, and loved.
So, this June 5, HIV and AIDS Long-Term Survivors Awareness Day, I thank God, life, my doctor, and the medications for keeping me alive, happy, and healthy. So, there are happy endings after all….
TARA K. (a.k.a. Tara Kulbatski MU)
Tara K. [A&U, June 2016] is a performing artist, advocate, and ally. Catch up with her latest shows by visiting online at https://www.facebook.com/RazzleDazzle817/
I admit that I did not realize that HIV Long-Term Survivors Awareness Day was a thing, so I had to look it up. I had said in my  interview that I was amazed at all the advances that have been made toward HIV and AIDS, and how people are living longer lives and in some cases are practically HIV-free.
Something that had occurred to me the other night, while sitting up at 3 a.m. waiting for my two-year-old to go to sleep, besides how much I wished that his grandmother was alive to meet him, was that so much of what we hear about the AIDS pandemic is from the scope of men, which, granted, it makes sense since they had the largest amount of deaths, but it led me to look up what famous women died of AIDS. There was only one name I recognized….
The theme of this year’s awareness day is quality of life. To improve the quality of life of those who have been living with HIV since 1996, two years after my mother died from AIDS.
My mother always tried to reach out to people that needed help, and even though it was too late for her, I’m sure she would be happy that there are so many amazing people getting to live longer lives. I look forward to telling my son more about her when he is old enough to understand. For now, she is his Angel Grandma Janine that he gets to see in pictures on our fireplace.
Nancy Duncan [A&U, May 2017] is a long-term survivor and activist, and New York State certified peer worker.
I am grateful for surviving, and even thriving as I’m going on my thirty-seventh year of living with HIV. This time I’ve been given has allowed me the opportunity to see my son grow into an amazing forty-two-year-old man and has afforded me a career as an NYS Certified Peer Worker to help educate others. I still hold onto memories and a sense of deep sadness for those who did not survive the complications of AIDS and wish they could still be here with us. I’m glad for this day, because it brings awareness to the many of us who are still here striving to stay healthy and maintain a decent quality of life while aging with HIV, and it’s not been easy! I hope that all of the strong and beautiful people in our community will be able to seek the services and support they require to stay healthy and know they are not alone in this long bittersweet journey of the HIV long-term survivor.
[A&U, March 2019] is an award-winning performing artist and long-term survivor, who offers a “course in miracles” and teaches about trans awareness, and HIV and AIDS activism
Rev. Yolanda’s Church With A 2 Drink Minimum! A Trans-Tastic Interfaith, Inter-spiritual, God Optional Celebration of Life: www.yolanda.net/church
I contracted HIV in the eighties, and was diagnosed in 1996, the year that the meds were released to the public. I didn’t expect to live very long after seeing so many people die. However, I began to follow my doctor’s prescribed meds protocol and hoped for the best. Since I wasn’t sure I was going to live much longer, I took the opportunity to live out loud. I began to perform as Yolanda and embrace health, food-as-medicine, my spiritual awakening (I began to read A Course In Miracles), and writing songs about my journey. I created a life of mental, spiritual, and physical health that led me to the love of my life—Glen Ganaway—and to interfaith seminary where I graduated as Rev. Yolanda. I also began my music ministry known as “Church With A 2 Drink Minimum,” which continues to this day. My life is better now than I ever could have imagined in the eighties. Thanks to meds and programs in New York City that support persons living with HIV, I now do feel seen and heard and supported in my journey to old age. I am now inspired to live to be a hundred!
Anthony Johnson [A&U, February 2012] is a thirty-year HIV long-term survivor, advocate, volunteer, and a member of the National HIV and Aging Advocacy Network, the NHAAN Membership Committee, and NHAAN LGBTQ Long-term Survivors Committee.
I often tell people I feel like a dinosaur, like a creature forgotten in time. However, unlike a dinosaur, I am an HIV long-term survivor. Many of us, survivors, have fought for care and services for those living with and dying from HIV and AIDS, and also for our own needs and our own voice in the conversation.
Yes, we’ve come a long way, and I’m truly grateful for it. However, let’s not forget how we got here, let’s not forget those we’ve lost along the way. We need compassion, love, and care, too. We need HIV services and programs that grow with us, and that are specific to our unique physical, emotional, and spiritual needs.
BRANDON LAWRENCE-MARTIN LEE
Brandon Lawrence-Martin Lee, a.k.a. “The Orange Warrior” [A&U, March 2018] has worked in public health for twelve years, focusing on LGBTQIA+, PLWHA and under-served communities. When not helping in the hospital, he loves playing video games on Facebook Gaming (Theebucketlistgamer). Also, follow Brandon Lawrence-Martin Lee on Twitter @PoohPlays.
I write this at work, where I’m surrounded by patients whose journeys with HIV have been longer than the history of this magazine or even longer than I’ve been alive. Yet, here they are, filled with joy, telling us about their amazing week, recipes they’re going to be trying tonight, grandchildren who are graduating, and so much more.
Yes, some days are worse than others. But after all this time, the virus hasn’t taken away their penchant for happiness. A crisis that felt like ages ago, an epidemic that counted these people out in three months wouldn’t have been able to imagine the same people surviving for three decades, couldn’t fathom some of them thriving in thirty or forty years later.
People are not living with HIV. HIV is living with them.