I have a very vivid memory of getting a papercut in my classroom in the United States shortly after we’d returned from Greece. It was small, and my automatic response was simply to suck my finger to take the sting away, and then move on with my life.
Instead, the teacher initiated hazardous infection control protocol, swinging into high gear to isolate my bleeding self from the rest of the classroom, wearing gloves while she guided me to the nurse’s office for cleanup, and scrubbing down the site of my injury with ample amounts of bleach. It left a smell that lingered for hours. The project I’d been working on was picked up in gloved hands and thrown away, just in case it was contaminated.
It was the early 1990s, and we were starting to learn a lot more about HIV/AIDS, and HIV was utterly, starkly terrifying. Blood could harbour a killer, even blood from an elementary school student folding up clumsy paper cranes to send to a Japanese sister city, and our school wasn’t messing around. Any time the red stuff showed, all the adults present had to go into action.
Thanks to my father’s years of living in the Castro, I already knew what HIV was. Even at a young age, I’d attended my fair share of funerals for my father’s friends, and I’d watched him answer the phone to bad news enough times to understand that something horrifying and terrible was happening in San Francisco, and that it was spreading. HIV was a thief and a monster that took away my smiling “uncles” and replaced them with thin, wan men with papery skin and thinning hair, so frail that they barely seemed alive when we visited them on the notorious Ward 86.
HIV was so terrifying that when Ward 86 opened, it was staffed entirely by volunteers.
Throughout my school years, every sex education class came with stern reminders to use barrier protection at all times, and to know the disease status of any sexual partners, with a particular stress on HIV, the killer. My high school kept a large bowl of condoms and dental dam in the main office for students to dip into whenever they pleased, and many did please, thank you very much. The idea of having sex without protection was abhorrent to me, as it was to my partners, even when we did know our disease status because we got tested regularly; HIV can incubate for a while, and it’s not caught by early tests. STI testing is not comprehensive.
You didn’t want to get HIV, or you’d die. At the very least, you’d be struggling with chronic illness over the course of your shortened lifetime.
There’s been a shift in attitudes about HIV in recent years, and it’s a shift many epidemiologists, people who lived through the early years of the epidemic, and sex educators are finding troubling. HIV today is seen as a nuisance in the United States, not a death sentence. That’s the result of years of research, patients volunteering for exhaustive clinical trials, and substantial investment in HIV treatment.
Sure, it’s incurable, but it’s no big deal, right? You can just take some medications to manage it, and everything is cool. Those medications might be extremely expensive and you could require constant monitoring for the rest of your life, but that’s not something people see. What they see is people with HIV diagnoses who have been living for decades and appear relatively healthy. What they see is survivors celebrating landmark anniversaries and showcasing the success of HIV research and treatment in the US.
NPR recently conducted an informal poll on Facebook to find out what younger listeners thought of HIV, and some of the responses were really chilling, like the young man who said he thought of HIV as more folklore than reality. Or the young woman who seemed more concerned about “aesthetically unpleasing” STIs like genital warts than about HIV.
These responses are accompanying a reticence to talk openly about disease status, and less interest in pursuing safer sex measures. The stigma associated with STIs endures, at great cost to all of us. People who have STIs are isolated as pariahs and warned against disclosing, while those who don't have them (or think they don't) think they're safe.
In a world where HIV is a myth, one where you think it’s not fatal, there’s less of an imperative to talk to partners and use barrier methods; even though these measures will protect you from other STIs in addition to HIV. Meanwhile, outside the US, there are still many regions of the world where HIV most definitely is a death sentence that will progress to full-blown AIDS, because people can’t access or afford the costly medications needed to control the virus, let alone maintain the grueling regimens of medication and regular medical evaluation.
I had a blood transfusion shortly after my birth, right in the prime window for HIV-contaminated blood, especially in the Bay Area. At the time, a number of Bay Area blood banks were working as fast as they could to identify risk factors and screen blood effectively, even though there wasn’t a test for HIV yet. I’ve been repeatedly tested since then and each test has been negative, and I still view my test results with a giddy sense of relief every time I open them and they’re negative, because I came of age in an era when HIV was the monster under the bed, and when blood was something to be deeply feared.
The gains made in fighting HIV were made at tremendous costs; people died in pursuit of medications to control the virus, and researchers continue to struggle to understand it and develop more effective treatments. The open conversations we had about HIV and sexuality were spurred by AIDS activists who led marches, teach-ins, and protests across the country to force people to pay attention to the growing crisis. Their contributions are already being forgotten, and their legacy is crumbling around us, and I worry for a generation who thinks that HIV is NBD. Au contraire, my friends. It’s a BFD.