Linguistic History of HIV/AIDS

March 31, 2023 8:08 AM

I recall a shift, sometime in the late 80s or early 90s, when people moved from saying someone had AIDS to someone being HIV positive. I'm wondering if my memory is correct and if so when, more precisely, that shift happened.

I came of age when there were no treatments for people with HIV and I feel like I remember a shift happening around the time when AZT came on the market. So pre AZT people "had AIDS" and as AZT came into broader use people "were HIV+. I'm most interested in how and when the terms were used in the general/popular culture and not so much in academic or medical circles; I imagine the latter used the more medically correct term of HIV+ long before the general public.

This question is mostly founded in curiosity. I'm reading a novel set in 1989 and a character is talking about people having HIV and it struck me as not period specific. It's just niggling my brain and I'm hoping to figure it out.

posted by brookeb to Society & Culture (10 answers total)

The Denver Principles (1983) with give a starting point in the discussion on how HIV and AIDS are discussed

Edit: the hyperlink doesn’t seem to be hyperlinking: https://data.unaids.org/pub/externaldocument/2007/gipa1983denverprinciples_en.pdf
posted by raccoon409 at 8:11 AM on March 31, 2023

Best answer: ACT UP pushed hard for changes in terminology starting in 1987, so PWA (people with AIDS) and later PLWA (people living with AIDS) as opposed to "AIDS victims". The HIV+ or + branding became popular in South Africa with TAC (Treatment Action Campaign) and their HIV positive t-shirts, famously worn by Nelson Mandela among others.

For further reading consider Stefanie Nolen's profile of Zachie Achmat in this book , Jack Lowrey's recent book on Gran Fury and Sarah Schulman's excellent Let the Record Show .
posted by Cuke at 8:20 AM on March 31, 2023 [5 favorites]

I think even pre-AZT there was a recognition that having AIDS and being HIV positive were not the same thing. When we had AIDS education when I was in middle school (pre-AZT) we were taught about HIV (the virus you get), ARC (AIDS-related complex, which I believe is no longer considered a thing, a kind of middle ground between HIV and AIDS) and AIDS (a disease that some people with HIV get, caused by the virus. At the time it seemed like everyone who had HIV would eventually get AIDS, but that for some people it took longer than others).

Anyway, I don't think this is a language shift. I think this is an epidemiological shift. Most people who were HIV positive used to get AIDS. With anti-viral treatments many people who are HIV positive never get AIDS, which is why we are talking about HIV now instead of AIDS. AIDS just doesn't happen nearly as much anymore.

Here is info about HIV vs. AIDS from HIV.gov, which I assume is a division of CDC or HHS?
posted by If only I had a penguin... at 8:21 AM on March 31, 2023 [17 favorites]

Much like the early days of covid, until 1985 there was no test for HIV so there was only a differential diagnosis of AIDS, or actually GRID (gay related immune deficiency, no I am not joking) up through 1982 when the AIDS nomenclature replaced it .

If you got sick in certain ways and had a certain set of life experiences, it was said to be AIDS - maybe. It took some time for any kind of diagnosis protocols to standardize, and I don't think that really solidified until well past the availability of testing. A lot of people were treated for and had listed cause of death of one of the contributing factors - pneumonia, Kaposi's Sarcoma, infection, "wasting" etc. A lot of families pushed hard for those to be listed as cause of death instead of GRID, AIDS, or HIV-related wording.

We knew something caused it, but HIV wasn't identified until 1984. The original tests approved in 1985 were for testing donated blood and blood products and sort of incidentally for people. The first tests were shitty and fussy to administer correctly, but that is when the term "HIV positive" entered the lexicon, and while those early tests came with warnings that HIV was NOT AIDS, at that point it was a picky distinction because HIV was untreatable and AIDS was basically inevitable in the very near future. The distinction did start to stretch out more over the next few years as more people got tested more often if they were at risk, rather than the testing largely focusing on people who were already suffering suspicious symptoms.

This is a pretty good high-level timeline.
posted by Lyn Never at 8:46 AM on March 31, 2023 [7 favorites]

Seconding If I Only Had A Penguin's recollection.

I admit this is a very clumsy analogy, but it's like how there's a difference between being sick with Covid and being a carrier but not having any symptoms. I think this was to distinguish between someone who was infected with the virus but was NOT struggling with other infections, and someone who was infected and was struggling with multiple other health issues as a result. For a while I also remember people using the phrase "full-blown AIDS" if they were discussing someone who'd infected for several years before actually developing secondary infections ("Sid was HIV positive for years and AZT was working for him, but then they changed the price and he couldn't afford it and he's starting to get full-blown AIDS now, dammit").
posted by EmpressCallipygos at 8:52 AM on March 31, 2023 [4 favorites]

Also interesting from a pop culture perspective: a list of HIV+ television characters.

The term "HIV positive" was not in any way academic-only. Testing was for HIV, not for AIDS. The publicly-available information was clear and education-oriented around this term and about the communicability of HIV, not AIDS. We were taught to discuss the "HIV status" of potential partners, well before 1989 (I graduated HS in 1990, so this is all entirely intertwined in my sexual maturity and MTV-watching years).
posted by Lyn Never at 9:02 AM on March 31, 2023 [2 favorites]

Best answer: Here's an Ngram with various phrases that might be of interest. Here's another one, without "living with HIV" that lets you see the other variants more clearly.
posted by BlahLaLa at 9:06 AM on March 31, 2023 [1 favorite]

Bear in mind that since the words/phrases were being spread by print newspapers rather than via internet,

the dominance of the phrase "HIV positive" in eg San Francisco

might have come months or even years earlier than it did in Sydney

and earlier in Sydney than it did in Adelaide...

And newspapers aimed at the LGBT community would have adopted "HIV positive" earlier than mainstream newspapers.
posted by chariot pulled by cassowaries at 9:45 AM on March 31, 2023 [2 favorites]

I think for most people (me at least), the turning point was probably Magic Johnson. Before that, AIDS was just HIV plus time. If you got infected, you'd get AIDS a few years later. (I have no idea if this is scientifically true, but this is what I, as a tween, believed at the time.) So when Magic announced he was HIV positive in 1991, everyone just assumed he'd die of AIDS in like 1995 or 1996. But in 1995, he not only hadn't died, or even gotten worse, he was actually playing in the NBA again. He was the first HIV+ public figure that didn't develop AIDS, at least public enough for Midwestern tweens to know about. Other people who were more plugged in probably made the change before, but mid-90s is when *everyone* really started distinguishing.
posted by kevinbelt at 9:48 AM on March 31, 2023 [4 favorites]

Best answer: I'm going to say this became real common from 1985 and on. The Advocate and other periodicals with personnel ads divided their men-looking-for-men columns up into HIV Pos and HIV neg and used the terms in their articles as well. At my junior high school it was still "They have AIDS!" but in the milieu there was a clear distinction between having tested positive and already being in the end stage.

The assumption was that once you tested positive it was time to set your affairs in order and make the most of they short time you had left, and iirc for a number of guys the priority was to set up a mutual care taking network so you didn't have to go home when the time came. Going home was the option of last resort. The entire community, lesbian, allies and gay went all in on fundraising and volunteering to provide dedicated hospices specific to AIDS patients. I remember there were couples where one had AIDS and the other didn't yet, and the support was made available to both of them, include respite care for the one who was many months away for hospice. If you were HIV pos you got different support than if you were diagnosed with AIDS.
posted by Jane the Brown at 12:25 PM on March 31, 2023 [3 favorites]