I am 72 years old. I have been living with HIV/AIDS for 44 years. Even in my wildest dreams I never ever thought I’d still be alive today. Neither did anyone else. To this day many people still think that none of us survived. For young people today the AIDS epidemic in the United States (1980-1996) is ancient history, something that happened far away and long ago. It’s been almost fifty years since the AIDS epidemic began. The passing of the last survivors of the AIDS epidemic is now upon us. Like the Holocaust, the American destruction of Hiroshima and Nagasaki by atomic bombs, or the witch hunt of the McCarthy era, the AIDS epidemic is no longer being taught. It is no longer part of our collective memory.
We are currently witnessing the passing of the last survivors of the Holocaust. The strategy of “never forget,” to prevent another genocide of Jews, is also being forgotten. Holocaust deniers have grown legion in number, and more aggressive. This is a horrifying reminder of how deep antisemitism runs. The current Israeli-Hamas war has only intensified this hatred.
The Doomsday Clock is a metaphor for how close humanity is to destroying itself. As of January 28, 2025, the Doomsday Clock is set at 89 seconds to midnight. This is the closest the clock has ever been to midnight since it was created in 1947. The younger generations have no awareness of the fear of nuclear annihilation my generation grew up in—“duck and cover” air raid drills, practice air raid sirens, and signs on public buildings marking fallout shelters.
Roy Cohn, the lawyer who advised Senator Joe McCarthy in his chilling and career- and life-destroying witch hunt for communists and homosexuals in the 1950s, was once described as a “legal executioner—the toughest, meanest, loyalest, vilest, and one of the most brilliant lawyers in America.” Cohn was vilified for his self-hating homophobia in Tony Kushner’s Angels in America, the Broadway play about the early years of the AIDS epidemic. Cohn went on to school Donald Trump in the tactics that have permitted Trump to become America’s first dictator.
With the advent of the antiviral “three-drug cocktail” in 1996, AIDS became a chronic manageable disease. This ended the diagnosis of AIDS as a death sentence. The progression of AIDS had been an inevitable descent into extremely painful, disfiguring, premature, and increasingly disabling decrepitude before the final opportunistic illness ended the person’s life. Mass media was complicit in erasing the visceral horrors of ‘living with AIDS” and replaced it with the comforting images of “surviving and thriving living with HIV.” This is akin to diabetes—if you take your medicine you will not get sick. It’s as if you’ve recovered from the disease. This mollification has not been helpful for us long-term survivors. By the medical definition, the diagnosis of AIDS is permanent, just as a diagnosis of diabetes is. However, redefining AIDS as “living with HIV” glosses over us long-term survivors who live with the often still present trauma, of witnessing the deaths of so many of our friends in their 20s and 30s, expecting to join them soon. I still remember the many friends I had expected to grow old with. I continue to live with reminders of our past and my own HIV infection.
Some of what remains etched in the collective memory of the gay community our “forgotten generation” is from includes President Ronald Reagan refusing to mention AIDS for a full five years into the epidemic, Reagan’s government refusing to fund medical research, Anthony Fauci (director of the National Institute of Allergy and Infectious Diseases at the time) eventually becoming a hero in the gay community for pushing to move HIV research from marginal to urgent status, the rise of ACT-UP in response to institutional unwillingness to recognize that people with AIDS are actual people, the joyous celebration across the Christan right of AIDS as God’s punishment for homosexual perversion, Rock Hudson appearing on the cover of Time magazine, his face haggard and emaciated from AIDS-related wasting syndrome (this came as shocking news to the general public that Hudson was gay and that the AIDS epidemic was real), and fears that we’d all be rounded up in concentration camps. Even the historically liberal Swedish government floated the idea of isolating Sweden’s gay men on an island “for their own protection.”
Crackpot theories flourished. There was widespread suspicion in the gay community that the federal government had created a “gay disease” to kill us all. The first name officially given to this new disease was GRID— “gay-related immune deficiency.” And it affected “the 4H’s” –homosexuals, heroin users, hemophiliacs, and Haitians. No one knew how it spread. Many gay men stopped having sex. Many of us stopped kissing. Believing a healthier lifestyle would prevent it, many men joined gyms and worked out, changed their diet, stopped using poppers, many gay men joined Alcoholics Anonymous to give up alcohol and drugs. It is difficult to describe the terror we gay men felt, not knowing what was killing us, how it was spread, who would be next to die. We lived through years of anger, anxiety, and poor sleep filled with nightmares. We formed peer-led support groups. We organized politically—anger and frustration were funneled into ACT-UP, which demanded political and medical change. And we cultivated joy and splendor as tools of survival, expressed in disco dancing and local Ballroom scenes, as documented in Paris is Burning (1991).
Here are some definitions and a timeline to anchor the reader. The human immunodeficiency virus, or HIV, is a virus that attacks the immune system, specifically the CD4 cells (or T cells). HIV is transmitted through bodily fluids, like semen, blood, vaginal fluids anal fluids, and breast milk. HIV was spread primarily through unprotected anal, sex, sharing needles for drug use, and through birth. When CD4 cells drop and remain below a certain level (official definition for AIDS is 200 T cells or less), the body becomes vulnerable to an array of life-threatening infections. Signature AIDS-related Infections in the years of the epidemic included Kaposi’s sarcoma (skin cancer), pneumocystis pneumonia, CMV retinitis (which caused blindness), AIDS-related dementia, and AIDS-related wasting syndrome.
As with the emergence of Covid-19 in 2020, there was an immediate urge to identify where HIV originated. As with other deadly diseases, this search was driven as much by scientific understanding as the desire to cast blame. President Trump used the emergence of Covid in China to gleefully fan the flames of anti-Asian racism. HIV emerged in central Africa in the early twentieth century, when SIV (simian immunodeficiency virus) spread from chimpanzees to humans. In the 1960s Haitian professionals working in the Democratic Republic of Congo brought HIV home to Haiti. From there it was brought to New York City in 1970 and then on to San Francisco. KS (quickly dubbed “gay cancer”) and pneumocystis pneumonia began mysteriously turning up in gay men in 1981. Even before it was established how AIDS was transmitted, the medical community named it GRID (gay-related immune deficiency). San Francisco-based gay journalist Randy Shilts identified Gaëtan Dugas, a French-Canadian flight attendant, as “patient zero.” He fit the profile—a sexually promiscuous gay man flying hither and yon spreading GRID willy-nilly. Shilts identification of a “patient zero” was later discredited as a narrative strategy for his story, not backed up with scientific proof.
The first anti-viral drug was AZT, which, in small dosages slowed the progression of the disease only slightly and, in massive dosages accelerated the progression of the disease. Numerous subsequent anti-viral drugs were not much better and came with a host of sometimes debilitating side effects. The introduction of HAART (highly active antiretroviral treatment) and new medications in 1995 transformed AIDS from a death sentence to a manageable disease almost overnight. Twenty years later (in 2016) the “U = U” campaign (undetectable = untransmittable) was launched by Bruce Richman and the Prevention Access Campaign to counter AIDS-phobia and promote awareness that people living with HIV and on antiretroviral treatment cannot infect their sex partners. The now widespread practice of PReP (pre-exposure prophylaxis) protects uninfected sex partners from contracting HIV. However, PReP does not prevent the spread of other STIs.
During the later years of the epidemic (1987-1996) the total number of deaths from AIDS was 324,029. There are no records for the early years (1981-86). The cause of many of those deaths could not be ascribed. Many obituaries stated cancer or pneumonia or other disease as the cause of death. During these years in the United States 1 in 9 gay men diagnosed with AIDS and 1 in 15 gay men died of AIDS. AIDS epidemic primarily affected gay baby boomers (those born 1946-1964). There is a generational divide between those who came out pre-AIDS and during AIDS. AIDS profoundly shaped our personal, social, psychological, community life.
AIDS activism grew out of the federal government’s refusal to support medical research. President Ronald Reagan refused to say the word “AIDS” for a full five years. As long as this was a disease that only affected gay men it wasn’t worth bothering with. Societal homophobia found its most enthusiastic expression among the Christan right, who celebrated AIDS as God’s punishment for the sin of homosexuality. In 1983 a group of activists at a gay and lesbian health conference recognized the importance of self-determination for those affected by HIV. They drew up the document known as The Denver Principles. Activism took shape in the formation of the GMHC (Gay Men’s Health Crisis) in New York City, ACT UP (AIDS Coalition to Unleash Power), NMAC (National Minority AIDS Council), the Latino Commission on AIDS, and the BAI (Black AIDS Institute). It took activism from both outside and inside the government and the medical community to effect change.
The political response to the AIDS epidemic was matched by aesthetic responses. These were created in the urgency of the moment, artists focused on expressing their fears, hopes, and the feel of the moment as the gay community was circling the wagons. Scant thought was given to lasting aesthetic values. As is said of journalism, news is the first draft of history. John Preston expressed this in his 1989 anthology Personal Dispatches: Writers Confront AIDS. San Francisco gay journalist Randy Shilts’ And the Band Played On (later made into a film) That book chronicles the discovery and spread (AIDS) with a special emphasis on government indifference and political infighting, specifically in San Francisco, ignited over the shutdown of gay bathhouses as a public health hazard.
Some work produced in these early years have emerged as having a lasting aesthetic value. Larry Kramer’s play The Normal Heart was first performed in 1985 Off-Broadway and made into a film in 2014.
In his 1989 documentary Tongues Untied Marlon Riggs detailed North American Black gay culture and his own experiences as a gay man. Hin e documents coping with the deaths of many of his friend to AIDS. Riggs died of AIDS in 1994. The narrative structure is both non-linear and unconventional and includes documentary footage of the Civil Rights Movement and Eddie Murphy’s notorious a homophobic stand-up routine. I recall him saying that “women be kissing faggots and getting AIDS from them.”
Tony Kushner’s (1991) Angels in America played on Broadway. The graphic artwork of ACT-UP (agitprop art produced by the Gran Fury artists collective) was celebrated in a 2024 Queer Activist Art exhibition at the Metropolitan Museum of Art. The art work of Keith Haring, whose pop art emerged from the New York City graffiti subculture of the 1980s, has had far-reaching influence on other artists. His now iconic artwork is instantly recognizable.
Many people who died from AIDS did not receive funerals. Many funeral homes and cemeteries refused outright to handle the deceased’s remain. Surviving family members feared the social stigma. In 1987 gay activist Cleve Jones, proposed a way to remember and honor our dead. He founded the NAMES Project in San Francisco, which made the AIDS Memorial Quilt. It is largest community arts project in history. It was publicly displayed for the first time on the National Mall in Washington, DC during the National March on Washington for Lesbian and Gay Rights in 1987. In 2019 quilt was relocated to San Francisco under the care and stewardship of the National AIDS Memorial Grove in Golden Gate Park. The Archives are housed in the American Folklore Center at the Library of Congress.
World AIDS Day is an organized effort designed to provide education and awareness on issues surrounding HIV/AIDS. The first World AIDS Day was observed on December 1, 1988. (Since there is no way of pinpointing the exact date I was infected with HIV, I symbolically acknowledge my date of infection on December 1, 1981.) The USPS issued a 29-cent commemorative stamp on December 1, 1993, raising awareness about AIDS. The stamp features a red ribbon, the result of the shared ideas of a group of New York artists who had gathered to discuss a new project for Visual Aids (a New York arts organization that raises awareness of HIV in 1991). The red ribbon is still worn on World AIDS day, much like the custom of wearing a red poppy pin in remembrance of the First World War. Associated with Armistice Day (November 11). In Britain the poppy is work for the entire month of November. The AIDS red ribbon inspired several other ribbons, the most popular one today being the pink ribbon for breast cancer awareness. National Long-Term HIV/AIDS Survivor Day a day to honor long-term survivors of HIV and raise awareness about their needs, issues, and journey. It was first observed on June 5, 2014, recognizing June 5, 1981, when Dr Michael Gottlieb published a nine-paragraph report, “Pneumocystis Pneumonia—Los Angeles,” in the CDC’s newsletter, Morbidity and Mortality Weekly Report. The report was the first clinical description of AIDS.
Today LGBTQ millennials (born 1981-1996) commonly joke about becoming queer elders in their early 30s. To a degree this is understandable. The AIDS epidemic wiped out most of the generation that would have been the queer elders of the millennials. The fact is there are a lot more of us still around than people realize. Ageism is rampant in American society. And gay men are particularly pernicious in their ageism. Older gay men are broadly seen as sexually undesirable and therefore of no value. We are typically invisible or treated as if we should be. When I was a grad student at UC Berkeley I was in a student support group for gay men. About half of us were undergrads in our early 20s and half grad students in our early 30s. We had one revealing discussion about the communication gap between our generations. The younger gay men interpreted any effort by an older gay man to reach out as an unwelcome sexual advance. Proclaiming that “we lost an entire generation to AIDS” gives a free pass to erase us long-term survivors and remain blind to the ageism of our community.
Who is a long-term survivor of AIDS? For the purposes of this anthology I have defined long-term survivors as those diagnosed pre-HAART (before 1996). For us this diagnosis was an automatic death sentence. This generation has been uniquely shaped by this defining experience. Founded in 2015 The Reunion Project uses an expanded definition that includes anyone living with AIDS for ten years, as well as another forgotten generation within a forgotten generation of those who have been living with HIV since birth. (There is no essay from one of these survivors in this anthology since no one submitted an essay.) The Reunion Project hosts one- and two-day summits, called “Town Halls,” which includes workshops and facilitated discussions among researchers, advocates, and long-term survivors.
Since we have already been forgotten, I have been driven by a deep and passionate motivation to collect and preserve as many of our voices as possible before there is no one left. As an important and little known 2017 documentary about the AIDS epidemic in San Francisco was titled—We Were Here.
It has been a long and challenging road to bring this anthology to fruition. When Hank Trout was editor of A&U: America’s AIDS Magazine, he put out a call for submissions for a book of long-term survivors he hoped to publish. The response was zero. When I made a stab at such a project I reached out to several places I thought would reach potential survivors, including the San Francisco AIDS Foundation, the GMHC, and SAGE (headquarters in New York City). They all told me they couldn’t help me. Seeing a last-minute call for long-term AIDS survivors to be interviewed for a documentary In 2021, I went down to Manhattan to be interviewed. The artist was making this for A Day Without Art. Since 1981 Visual AIDS has commissioned and distributed a video program for Day With(out) Art, coordinating screenings at over 100 venues around the world. He was filming interviews back-to-back for several days. Mine lasted nearly an hour. I expressed my gratitude that he was making this documentary and felt relieved that my story had been recorded. When I saw the documentary I was quite upset to see that it was, in fact, an extended PSA. I contacted him several times, asking for access to his interviews or contact information so I could invite the other survivors to contribute to my book. He never responded to my emails. I posted my call for submissions on numerous AIDS Facebook groups. I got many, many “likes,” but not a single submission.
I continued to reach out. And slowly I began to hear back. I contacted Gregg Cassin, whom I had known in San Francisco, and he put me in touch with his AIDS survivors writing group. I was fortunate enough to reconnect with Hank Trout and a long-time Billy brother Harry Breaux. (Their stories appear here.) I reached out to another old friend, William Schindler. (His story also appears here.) I asked individuals I know from other circles, such as Matt Levine, Brian Douglas, Eric Crow, George Collier, Drew Kramer, and Dawn Trook. Martina Clark, Richard Daniels, Mark, Rose Stewart, and Bruce Ward responded to my open call. I am unable to explain the difficulty in persuading survivors to tell their story. Perhaps it was too painful and, like soldiers returning from war, prefer to remain silent. Perhaps they felt their story wasn’t important enough to tell. Perhaps the challenge of writing scared them off.
Many of us have in common PTSD and other mental illness, housing and financial insecurity (we didn’t plan for retirement), health issues doctors can’t explain, and Isolation and loneliness. Attention, when given to us, typically views us through the lens of trauma. We are more than our trauma. We are aging survivors. We are fighters and not without hope.
This anthology includes the voice of one person who remained HIV- and one person who was diagnosed just after the three-drug cocktail. Unfortunately, it does not include any voices of those who were born infected. The essays in this book are arranged in alphabetical order rather than in any particular grouping. This reflects the randomness of who became a long-term survivor.
Les K. Wright 