Merck (*) and the HIV initiative Prevention Access Campaign did a study on how well informed Millennials and GenZs are on HIV, and the results were both staggering and disappointing. (* Amazing! A big pharmaceutical company did something positive.) This isn’t a bash on Millennials, it’s a bash on people not being curious enough to learn.
I have to wonder if the end of stigma and fear caused incuriosity and ignorance. The high profile deaths of celebrities from HIV in the 1980s and 1990s (Freddie Mercury, Isaac Asimov, Rock Hudson, Arthur Ashe, Robert “Maple Syrup” Mapplethorpe) changed public perception of both the disease and of being LGBTQIA. There was a sharp decline in deaths following peak years 1992-1995 as more drugs and effective treatments came (AZT, “cocktails”, HAART, NNRTIs, PrEP). Did people stop paying attention and see it as “just another disease”?
New Survey of Young Adults Uncovers Low Levels of Accurate Knowledge About HIV Transmission Coupled with High-Risk Sexual Behaviors
Survey findings showed participants are not being effectively informed about HIV and its transmission; this trend worsened among Gen Z—the population furthest removed from the HIV crisis in the 1980s and 1990s. Forty-one percent (42/103) of HIV-negative Gen Z respondents said they were either not at all informed or only somewhat informed about HIV, compared to 23% (169/743) of HIV-negative millennials.
Despite no risk of HIV transmission through casual contact, more than one quarter (28%, 209/743) of HIV-negative millennials said they have avoided hugging, talking to or being friends with someone with HIV, and 30% (222/743) said they would prefer not to interact socially with someone with HIV. Among all HIV-negative Hispanic/Latinx and Black/African American respondents, one in three (34%, 100/295) said they have avoided shaking hands or sharing food, drinks or utensils with someone with HIV.
For anyone alive and aware during the 1980s and 1990s, lots of lessons were learnt about HIV, especially about how it was transmitted and treated. It changed from a death sentence to a treatable lifelong disease to potentially curable. Societal attitudes towards people outside the cishetero binary changed along with it. From A Mighty Girl:
In 1984, Ruth Coker Burks’ discovery of a hospital room door with a “big, red bag” over it and her encounter with the dying young man inside changed her life — and led her to becoming the final caregiver for hundreds of people dying of AIDS, most of them young gay men who had been abandoned by their families. When Burks, then 25 years old, learned how many young men were being left to die alone and often were not even being claimed for burial, she recalls thinking, “Who knew there’d come a time when people didn’t want to bury their children?” Over the next ten years, Burks estimates that she helped care for over 1,000 people dying of AIDS and even dug the graves for 40 of them herself in her family’s cemetery.
Burks was visiting a friend at University Hospital in Little Rock, Arkansas when she noticed a door with a big red bag over it. “I would watch the nurses draw straws to see who would go in and check on him,” she recalled in an interview with the Arkansas Times. Burks, whose cousin was gay, knew enough about AIDS to guess who the patient inside the door was — and fears about the disease didn’t stop her from sneaking into the room. Inside, she discovered a skeletal young man desperate to see his mother before he died. When she told the nurses, “They laughed. They said, ‘Honey, his mother’s not coming. He’s been here six weeks. Nobody’s coming.’” Burks convinced the nurses to give her his mother’s number and she tried reaching out one last time time, but it was obvious his mother had no intention of coming to see her “sinful” son who she considered already dead to her. As Burks told Katie Couric in an interview, she then returned to the room and took his hand. “I ended up staying with him for thirteen hours until he took his last breath on this earth.”
With his family refusing to claim his body, Burks decided to bury him herself in a local cemetery where her family owned hundreds of plots. “No one wanted him,” she says, “and I told him in those long 13 hours that I would take him to my beautiful little cemetery, where my daddy and grandparents were buried, and they would watch out over him.” The closest funeral home that agreed to cremate his body was 70 miles away and she paid for it out of her savings. A friend at a local pottery gave her a chipped cookie jar to use as an urn and she used a pair of posthole diggers to dig the hole.