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30 Years of HIV

33 years ago, on July 3, 1981, the New York Times first reported on AIDS.  Back then, they didn’t call it AIDS.  It didn’t have a name yet though it clearly had an existence.

32 years ago, on September 24, 1982, the CDC used the term AIDS for the first time.

30 years ago, just four days ago marking April 23, 1984, scientists revealed that the cause of AIDS was HIV, a retrovirus that infects cells in the immune system. This discovery led to the creation of a blood test that could detect HIV, saving countless lives and giving answers to people who had been suffering the effects of the virus. 30 years ago, the Secretary of Health and Human Services thought we’d have a vaccine within two years.

Next year, it will be the 30 year anniversary of Ryan White and the death of Rock Hudson.  Two years from now will be the 30th anniversary of  Cleve Jones making the first square in the AIDS quilt.  2018 will mark the 30th World AIDS Day on December 1st.  We will keep hitting 30th anniversaries until the calender shifts a decade and we start seeing the 40th anniversary articles for HIV/AIDS.

I came of age in an HIV-cognizant world.  I was ten and in summer camp when I first heard about HIV.  The swim counselor was reading an article, talking about it with a fellow counselor, while my friends and I shared a single bowl of vanilla ice cream, passing around a spoon.  It was the afternoon, almost time for camp to end for the day, and I asked my mother about it when I got home.  She told me I didn’t need to worry; that it was a disease that only affected older, gay men.  That’s what we thought back in 1984.

I remember my first cheek swab test.  I remember taking a boyfriend for his first cheek swab test.  HIV used to be in the forefront of my mind; it used to be in the forefront of everyone’s mind.  I feel as if we’ve come a long way from when Pedro Zamora was on The Real World; when Elizabeth Glaser was on the cover of People magazine.  When Rent was on Broadway and Philadelphia was in the theaters.  Not a long way in the sense of progress — though there has certainly been medical advances — but a long way from when the media was continuously reminding us not only to be mindful of our health, but that there were people around us living with HIV/AIDS.  Where did the media coverage go?  The storylines that educated the public?  Why are the articles all clumped around World AIDS Day or Youth AIDS Day or these 30-year anniversaries?

Perhaps I’m wrong.  Maybe it’s just the circle I move inside.  Maybe if I were younger, it would be all around me, a constant discussion.

Where were you when you first learned about HIV/AIDS?


1 KeAnne { 04.27.14 at 8:23 am }

I’m a few years younger than you (3-ish) and I remember learning about HIV & AIDS when I was about 4 or 5. I watched the nightly news at my great-grandmother’s and have vivid memories of those first stories about the disease. However, being so young, for a long time I thought spiders were connected somehow. Maybe they has a story about deadly spiders at the same time or maybe spider monkeys LOL. I think the stories and urgency appear to have tapered off because while there is no cure, HIV has become perceived as a chronic disease to be managed thanks to the newer meds. If it’s not perceived as a death sentence, it isn’t as sensational, sadly.

2 Jo { 04.27.14 at 8:39 am }

Although a few years younger than you, I also learned of HIV/AIDS at about 12 years old. My aunt and uncle (a straight, married couple in their twenties) were diagnosed with it. My aunt died a year or so later; my uncle is still alive today. It’s believed my aunt contracted the virus in the 80’s from a blood transfusion and passed it on to my uncle, though no one can be sure. I agree with KeAnne – now that more people are living with HIV, as opposed to dying from AIDS, the coverage is much, much less. An HIV test is a routine STD check for this generation instead of the terrifying experience it was for ours. Which is good, if you look at it in the way that the survival rate is so much higher (in the US, anyway) than it was 20 years ago. What we need to be doing is figuring out how to prevent it in Africa and other less developed countries where it still is a death sentence. Unfortunately it’s much harder to get people to care about issues that are happening half a world away.

3 Aerotropolitan Comitissa { 04.27.14 at 10:53 am }

I can’t remember, but what I can remember are all the after school specials, all the Degrassi Junior High-style AIDs episodes, all the soapie and sitcom characters “incidentally” cropping up with the disease and having to deal with it.

New infections recently topped deaths. I guess we’re not thinking of it so much as a here-and-now problem because survival has increased, as long as you have a good health system. It seems to be mentioned more often in a development context now.

4 Aerotropolitan Comitissa { 04.27.14 at 10:54 am }

Just read Jo’s comment – that’s so sad, Jo.

But yes, I agree about the half a world away.

5 loribeth { 04.27.14 at 11:46 am }

I don’t remember the exact moment when I first heard of AIDS but I think the first time I really became aware of it was with Rock Hudson in the early 1980s. By then I was in my 20s & with dh (met fall 1981, married 1985),. It wasn’t something I was personally worried about. But I had some friends who were gay & I worried about them & whether they would be OK. At the time, it was a truly frightening thing, because it really was a death sentence. These days, the survival rate is so much better (at least here in North America); you tend not to hear about it as much — but it’s still out there. Sometimes I think we’ve been lulled into a false sense of security. And yes, as Jo mentioned, it’s definitely still an issue outside of North America.

Andrew Sullivan recently had a series on his “The Dish” about “Why Aren’t Gay Men on the Pill?” Apparently there is a pill called Truvada that’s used to treat AIDS patients that has also showed some preventative/protective value — but is being met with resistance in some quarters. I’d never heard of it. Interesting. (The Dish is a paid subscriber thing, but you can get several free views before you’re asked to pay.)


6 Gypsy Mama { 04.27.14 at 11:47 am }

I don’t remember where I was the first time I learned about AIDS, but it definitely wasn’t something I thought about much until I graduated University and worked in International Development with people affected by HIV/AIDS. Now, I live in the Canadian province with the highest prevalence of HIV in Canada, with a rate three times the national average per capita. I see a lot of brochures at the Dr.’s office, on buses etc. as compared to my home province where there is practically no public education to speak of. Nothing compares to when I lived in Mozambique though, where public education campaigns were conducted on an ongoing basis every month of the year through various activities in the community.

I’ve often thought of HIV + kids who have been adopted into Western countries. While the many benefits are obvious, I wonder how it makes them feel to be such a minority. The HIV + kids I worked with in Mozambique never had to worry about people treating them differently because of their status.

7 Rebecca { 04.27.14 at 4:54 pm }

When Freddie Mercury died of it, when I was 8 years old

8 Davidah { 04.27.14 at 5:43 pm }

My beloved Jr. high school choir director died of AIDS in the late ’80s. He was a closeted gay man who probably couldn’t have been hired into his teaching position if he was “out”.

This was the moment when the epidemic became real for me.

9 Catwoman73 { 04.27.14 at 7:32 pm }

Though I don’t remember when I first heard about AIDS, I remember that it became very real for me when my uncle was diagnosed. He was one of the very early cases, and the stigma back then was horrible. I’d have to say that it was around that time that I learned just how awful people could really be. The world has come a long way since then, and I so wish he was still around to see it.

10 Mali { 04.27.14 at 7:58 pm }

I certainly learned of it in the early 80s, but again like my “sister” Loribeth, I was already with DH, and it didn’t affect me personally. A close friend in the US was a nurse specialising in HIV/AIDs in the 90s, and I learned a lot from her, and on one of my first visits to DC, visited the quilt with her (and some of her fellow nurses).

I agree that it seems to be forgotten as an STD, but that it is still seen as a “gay” disease, when you only have to look at the developing world to know that’s not the case. And the impact of HIV/AIDS in Africa is just devastating to countries that have enough problems as it is. So whilst I’m encouraged about the medical advances, I am also saddened that in many societies and parts of the world, we haven’t moved on at all. And 30 years has gone by in the blink of an eye.

11 Susan { 04.27.14 at 9:43 pm }

I was under 10 years of age. I can remember my mom talking about it. She worked as a nurse and had a lot of gay friends. She took me to hear a man speak about losing his wife and son from AIDS. He died a few years later from it. My mom also took me to see the AIDS quilt and it was very powerful to see how many people it took. I also read “And the Band Played On” by Randy Shilts when I was 12 years old. I had more knowledge about it than most kids my age. I appreciate my mom being so open and honest about it.

12 May ProblemUterus { 04.27.14 at 11:48 pm }

I was in middle school. They had an assembly about it, I think. Then I ended up working with HIV in graduate school and writing my dissertation on how it gets into its target cells. I left the lab when we started our family and I absolutely do not miss working in the BSL-3 lab with the virus. Everyone in the lab had the same recurring nightmare where you are mid-experiment with your hands in the cabinet with some infected cells and you realize you’re not wearing any gloves. Terrifying .

13 Heather { 04.28.14 at 10:08 am }

I don’t remember the exact moment either. I do remember when everyone started talking about it: the news coverage, the discussions at school.
There were two things that stick out as being big deals and AIDS: Ryan White and Magic Johnson. In my realm when Ryan was going through his experience we followed closely. When Magic Johnson said he was diagnosed it rippled through school because he was a basketball star.
A previous co-worker is a gay man and said that during the late 80’s and well into the 90’s night clubs would have buckets of condoms at the door to help promote safe sex. All of his friends and acquaintances would discuss this disease. Now? He says people barely talk about it and safe sex is not promoted nearly as much as previously.

14 deathstar { 04.28.14 at 11:18 am }

I don’t remember when I first heard of it, but I do remember I would not have sex with anyone without a condom and yes, I did encounter men who seemed unable to put one on, so too bad for them. I always had tons of condoms in my purse – they were giving them away in bars and clubs. My husband and I went to the doctor to get our tests done so we could have sex without a condom. It was a big freaking deal. I remember one of my best friends telling me he had it. I was 29 I think. I burst out into tears – cause you know, it was fatal and he told me all he could about it, how he think he contracted it. Well, he’s 50 now and still around. He’s had a ton of illnesses and chronic conditions because of it, but he’s doing well. Well, considering he had to go on disability, could not work and can’t afford to do much. He enjoys his life and I have had the gift of his love and friendship all these years.

15 GeekChic { 04.28.14 at 2:58 pm }

I was just entering high school. The beloved drama teacher was diagnosed and that caused a scandal because that meant he was gay (horrors). There was much parental angst over the fact that “someone like him” shouldn’t be around their kids and “would infect everyone”. The kids took a stand for him – as did his fellow teachers.

He taught the rest of that year and part of the next before dying. We all saw his progression through the disease and learned about how tough life was for a gay person in those days. When he died, the whole school went to his funeral and we met his partner – hugely scandalous at the time.

It was an education in compassion and bigotry. The bigotry has gotten a bit better – but not nearly enough.

16 Megan { 04.28.14 at 9:21 pm }

I was born in ’80, so I wasn’t really around for the beginning, but I do remember the stigma and the attempts to steer the general public away from avoiding those with HIV at all costs. I think when it really hit home and entered a deeper place in my life was a few years after Rent got popular on Broadway, when I was old enough to see it. It really humanized the disease for me.

(c) 2006 Melissa S. Ford
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