The Infamous Disease and the Famous
- Curators' Team
- Jun 12
- 6 min read
Updated: 2 days ago
Familiar Faces of the 40 Million People Facing Life With HIV/AIDS
In the ongoing fight against HIV and AIDS, the stories of public figures living with the virus serve as powerful reminders of resilience, activism, and the importance of public education. Many well-known individuals have courageously shared their journeys, transforming personal challenges into a collective call for awareness, prevention, and treatment.
HIV entered public consciousness in the early 1980s when five young gay men in Los Angeles were diagnosed with a rare lung infection called Pneumocystis Carinii Pneumonia (PCP), resulting in the tragic deaths of two of them. This marked the first official report of acquired immunodeficiency syndrome (AIDS) by the CDC in the United States, highlighting the severe implications of advanced-stage HIV infection. Back then, HIV/AIDS was considered a death sentence.
Dr. Anthony Fauci, the face of the COVID 19 pandemic, who became director of the National Institute of Allergy and Infectious Diseases at the height of the AIDS epidemic, told CNN “I went from a person who was seeing patients with other diseases and developing cures and adequate therapies for them in the early part of my career, to every day taking care of people who inevitably were going to die, usually within a short period of time.”
AIDS patient David Kirby on his deathbed, in 1990, became the one most identified with the HIV/AIDS epidemic that, by then, had seen as many as 12 million people infected
Name Calling
While LGBTQ+ communities were losing friends and loved ones to the disease, President Reagan's administration didn’t take the epidemic very seriously, calling it a “gay plague." But the government wasn't alone in the use of terms, such as "Gay Men's Pneumonia" to describe PCP. The stigmatization reflected the initial association of the disease with the gay community, and it transitioned into public shorthand like "gay cancer. The term "GRID" (Gay-Related Immune Deficiency) followed, and eventually, the more neutral term "AIDS" was adopted by the CDC.
"Patient Zero" Got His Fame After All
In 1981, while investigating possible causes for the disease, CDC scientist William Darrow caught his first clue: some of the early AIDS cases were lovers. "Whoa! This is the first indication that we had that the disease might be sexually transmitted from one person to another," Darrow said.
During his interviews with various men about their sexual experiences, Darrow discovered an intriguing pattern: three individuals, who were unfamiliar with one another, all mentioned the same lover—a flight attendant from Air Canada named Gaetan Dugas. This revelation led Darrow to connect eight early AIDS cases to the same man.
When Darrow documented his findings at the CDC, he referred to the men by a code based on the city in which they lived. "For those in LA, there was LA1, LA2 ... and so forth," Darrow says. He identified Dugas as "Patient O" (the letter, not the number 0), indicating that the case originated outside California. However, with the release of the book And the Band Played On, by Randy Shilts, Dugas was incorrectly labeled as Patient Zero, leading many to perceive him as the "source" of HIV in North America and turning him into a scapegoat for a devastating new pandemic.
The documentary that debunks the myth of Dugas as "Patient Zero/Enemy Number One" reveals that he once told a friend he "would be famous someday." It is fair to say that, although for all the wrong reasons, he indeed became infamous.
HIV/AIDS and Advocacy in Pop Culture
HIV/AIDS has significantly influenced popular culture across various media, including music, film, literature, and visual arts. Films like Philadelphia (1993), starring Tom Hanks and Denzel Washington, brought public attention to the plight of people living with AIDS. It was one of the first mainstream films to address the stigma surrounding the disease.
The series "Pose" explores the lives of the LGBTQ+ community during the height of the AIDS crisis, portraying both the challenges and the resilience. Shows such as "Will & Grace" also featured storylines that addressed HIV/AIDS, helping to normalize conversations around the topic.
FILM
One of the earliest and most influential figures in HIV awareness was actor Rock Hudson, who was diagnosed with the disease in 1984 and publicly announced his diagnosis in July 1985, dying a few months later.
His live-in lover, Marc Christian, was told by medical experts that the best treatment for AIDS would cost $100,000 a year, with a life expectancy of three years. Afraid he could be infected, he approached Hudson's managers after the actor's death and asked them to place $300,000 in a trust fund to cover his care if he developed AIDS, with the money returning to the estate if he remained AIDS-free. When the managers turned him down, he went public with allegations that Hudson never told him about his diagnosis, and that he learned the true cause of his partner's increasing gauntness from a 1985 television broadcast from Paris, where Hudson had flown to seek treatment for AIDS. Christian, who died in 2009 of an illness not related to AIDS, sued for $10 million and, in 1989, a Los Angeles Superior Court jury said Hudson had displayed "outrageous conduct" by concealing his illness and continuing to have sexual relations with him, and awarded Christian $21.75 million in damages, later reduced to $5.5 million. The $5.5 million award was upheld by a state appellate court, which called it just compensation for the "ultimate in personal horror, the fear of slow, agonizing death."
MUSIC
Freddie Mercury, the legendary frontman of the British rock band Queen, died one day after publicly revealing his AIDS diagnosis in 1991. The news shocked the world and brought unprecedented visibility to the epidemic. Mercury's openness in the final moments of his life helped humanize the disease and sparked crucial conversations about stigma, discrimination, and the urgent need for medical research.
Mercury first showed symptoms of HIV/AIDS in 1982 but wasn’t officially diagnosed until 1987. In the four years after his diagnosis, his health deteriorated until he had to step away from performing. His last public performance was at the 1990 Brit Awards, and his final appearance in a music video was for the filming of "These Are the Days of Our Lives" in May 1991. After June 1991, Mercury returned to his home in Kensington, where he remained until his death on November 24th.
Elton John has been another major force in the global fight against HIV/AIDS. Moved by the story of Ryan White, a teenager who faced discrimination after contracting HIV through a blood transfusion, John founded the Elton John AIDS Foundation. The organization has raised hundreds of millions of dollars to fund education, treatment, and support programs worldwide.
SPORTS
Similarly, Olympic gold medalist Greg Louganis made headlines not only for his diving achievements but also for his openness about living with HIV. He became the first man and only the second diver in Olympic history to sweep both diving events in two consecutive Olympics--and he did it six months after learning that he was living with HIV. In the mid-1990s, Louganis publicly disclosed his diagnosis, challenging stereotypes and becoming an advocate for HIV-positive individuals, particularly within the LGBTQ+ community. His story underscored the importance of compassion and understanding over fear and prejudice.
Louganis at the Olympics in 1991 and in 2023
NBA legend, Magic Johnson, profoundly altered public discourse on HIV when he announced his diagnosis in 1991. At a time when HIV was still widely misunderstood and deeply stigmatized, Johnson's decision to go public as a heterosexual athlete helped dispel many misconceptions about the virus. Since then, he has become a vocal advocate for HIV education and prevention, demonstrating that people living with HIV can lead long, healthy, and productive lives.
These stances do not withdraw challenges. Public disclosure often invites both support and backlash, reflecting society's complex relationship with HIV-related stigma. The reactions of fans and critics alike reveal prevailing attitudes and prejudices, but they also open doors to essential conversations about acceptance, education, and support for those affected by HIV.
In addition to public advocacy and storytelling, fashion has also become a means of activism. The iconic red ribbon, now synonymous with HIV awareness, is frequently worn by celebrities during major events to show solidarity. Stars such as Lady Gaga have taken this a step further, integrating HIV awareness into their performances, speeches, and wardrobe choices. Gaga, who has been an outspoken supporter of LGBTQ+ rights and mental health, frequently highlights the importance of testing and prevention, helping to keep the conversation alive for younger generations.
These high-profile endorsements not only draw attention to the cause but also challenge lingering misconceptions about HIV. When celebrities use their visibility to normalize conversations about the virus, they help dismantle the fear and ignorance that often surround it. Their efforts continue to inspire millions and play a crucial role in the global effort toward understanding, acceptance, and ultimately, a world free of HIV/AIDS.
