(This is a bit late for AIDS Day, which was two days ago. My apologies.)
My parents got a subscription to a popular-science magazine for me when I was about ten and eleven; something that’s since folded, called Science 80 (or 81 or 82 depending on the year). Most of the issues are long gone and I’ve long forgotten them, except for one – an issue where the cover story was about the Center for Disease Control, and all about how they worked. The author decided the best way to demonstrate the CDC’s workings was to analyze, step-by-step, all the steps that the CDC was using to analyze a new disease cropping up; first it had appeared in a couple of gay men in San Francisco, the article stated, and seemed to involve an unusually high instance of Kaposi’s Sarcoma. Then, the article noted, a couple of Haitian people presented with the disease, and then when a hemophiliac patient seemed to turn up that lead someone to suspect it was a blood-borne illness…the article ended with a discussion of how new diseases were named, and mentioned that one of the CDC staff had recently proposed “GRID” as a name.
By now you’re all nodding your heads in recognition. But I was only about twelve at the time, and while I’d maybe picked up on a couple of rumblings of some weird new disease out there, and thought the article was kind of interesting, it didn’t really register otherwise and that issue got relegated to the basement along with all the others that finally got all thrown out several years later when the basement flooded or the furnace crapped out. I still sometimes wish I could re-read it, from this longer perspective.
Two short years after that magazine came out, the news was suddenly full of CDC warnings about the disease – now named AIDS – public service ads about its transmission filled newspapers and reporters were trying to keep up with the shifting research about its effects. First it was just something sexually transmitted. Then blood-related. Then more body fluids. Maybe it was genetic, then maybe it was bacterial, then maybe it was viral.
Along with the CDC announcements there were also news reports of Act-Up and GMHC demonstrations, lobbying a largely indifferent President Reagan to increase funding into research for the disease. Most people who were dying were gay, they argued, and that’s why the world was ignoring them.
And they had a point. I remember a dark joke popular in my high school – “what would be the hardest thing about finding out you had AIDS?….trying to convince your parents that you’re Haitian.” AIDS was a disease that other people got, the perception was, outcast people – homosexuals, or maybe drug users. We were all good kids, we weren’t gonna get it. Which always seemed uneasily unfair to me.
By the time I got to college, the CDC had sorted things out and was aggressively pushing safe sex for disease prevention. College campuses and bars were handing out free condoms with a frequency that probably freaked out every parent in the world, and rap stars were singing about safe sex in their lyrics. And it worked – that was right when I first became sexually active, and even today I would no more go without a condom than I would chop off my own arm. The one time I had an HIV test – which I only got because I thought it was a responsible thing to do – I told the counselor my rate of condom use, and he just looked at me, looked at a sheet of paper he held in his hand, then crumpled the paper and said “welp, I guess I don’t need to give you the safe-sex lecture.”
Through my 20s and 30s, something remarkable started quietly happening – AIDS was becoming survivable. AZT was the drug people with AIDS were proscribed first; word was that it delayed a patient’s decline for a while, and the side effects were harsh – anemia, liver problems, muscle problems. Then came a combination of drugs, which quickly acquired the nickname “the Cocktail” – for most of the late 90s, when I heard someone talking about cocktails I would assume that’s what they were referring to, rather than a martini.
And it worked. People were living. The front-and-center awareness of AIDS began to fade as it became a chronic condition rather than a death sentence; maybe sometimes you still saw a safe-sex poster, especially here in New York, or an exhortation to get tested; or maybe you saw an ad for a particular HIV-fighting drug, usually something featuring a smiling, healthy-looking young man and slogans about how HIV wasn’t going to stop him from Living Life To The Fullest. But those ads were usually mixed in with transit announcements about reporting suspicious activity or ads for night schools or dermatologists, and they began fading into the wallpaper of my commute. You paid a little extra attention to it once a year on World AIDS Day, when people maybe dug out the red ribbons we all had on our coats all the time in the 90’s and maybe Bono would do some kind of concert about awareness of the disease in Africa, but other than that…life went on.
It’s 30 years since I read that magazine, which feels like a remarkably short time for a disease to go from “global epidemic” to “meh”. And in some ways, that is a miracle. The CDC did work remarkably fast at identifying the disease vector, locating a treatment, and spreading public knowledge about prevention. Granted, things could have moved faster if President Reagan had acknowledged the crisis sooner, and people haven’t forgotten that; during the recent news furor about how President Obama was supposedly lax in his response to ebola, someone on my Facebook feed pointed out that Reagan ignored far more AIDS deaths.
Unfortunately, the disease is still not “meh” to a large portion of the world. It’s just as much of a crisis in sub-Saharan Africa as it ever was. We know how to cure it, yes, but that doesn’t help if the people who need those cures can’t get it.
But too many of us are blinkered. It’s faded from public consciousness here, so our attention is slipping. There’s even talk of people starting to forget about safe sex; I’ve seen re-appearances of ads reminding people about condom use and testing again, in response to the generation after me starting to slack off. They’re coming of age at a time when HIV is like diabetes or herpes – an unfortunate but manageable chronic condition. Conversely, something like ebola made us all panic – even though the CDC is well aware of its cause, treatment, and prevention, and has been for years, based on it being a persistent problem in Africa as well. But it just wasn’t happening here.
A few months ago I heard another case study about the beginnings of AIDS – this time, a radio show did a case study on how it may have started. There’s been a lot of speculation over the years – everything from botched vaccinations to increased colonial activity during the 1950s and 60s to an increased reliance on “bushmeat“. But the thing that struck me was when the broadcast looked at the myth of a “Patient Zero”. A flight attendant from Canada has long been targeted as the first to start spreading HIV in North America; I even remembered a 60 Minutes news spot on the man when I was about seventeen. However, he wasn’t the first reported case of AIDS in the world; he wasn’t even the first in North America. He wasn’t even the first in The United States – there is now evidence that a teenager from Missouri, who died of mysterious causes in 1969, apparently was a carrier of HIV. And he never left Missouri and never had a blood transfusion, so he must have caught it through a sexual transmission – which means that someone else must have also had it to give it to him during his lifetime.
But the bulk of the early cases were mostly either in Africa, or were outcasts in this country. Merchant seamen. Truck drivers. Down-on-their-luck veterans. People we could ignore. People we did ignore – at our peril. If we’d been paying more attention in the 1920s, or in the 1940s or 60s, the CDC would have had far more information to draw on in the 1980s, and many of those lives no doubt could have been saved. And who knows what other diseases we could be preventing if we start paying attention to the epidemics outside our borders today.
Unfortunately, though, it seems that sometimes the only way to get people’s attention to a crisis is if it happens in their back yard – either a sick person visits their local bowling alley, or a team of activists stages a sit-down strike in their office, or their kid gets a magazine talking about it. Maybe that’s all we can manage.