THE AGE OF AIDS
To test, or not to test — that was the question.
So around 1986 the Western Blot test became available to test for the presence of HIV and then the next year the Elisa test came on the market.
But the problem with both tests was that at the time they took ten days to two weeks to get the results back and, we found out from unfortunate experience, frequently those results came in the form of false positives.
And you can only imagine the fucking psychological carnage that resulted from thinking you were positive and then finding out, sometimes much later, that you were not.
So pretty much every gay man in New York was discussing with his friends and his doctor whether or not to get tested.
And if you can believe it or not the prevailing medical wisdom at the time was that if you were reasonably sure that you may have been exposed to the virus at some point — past episodes of STDs in your life combined of course with having tons of your past and present sex partners dropping dead around you being a good hint that such might be the case, both of which pretty much every gay New Yorker had close personal experience with at the time — then doctors were advising AGAINST being tested.
And their reasoning was based on the belief at the time that the possible stress in one’s life that you could be subjected to while waiting for the results of your test might cause dormant HIV to bloom into a full blown case of AIDS.
And since waiting the two weeks for your death sentence HIV test results was, if nothing, stressful — then most docs were saying we shouldn’t get tested for fear of bringing on a full blown case of The AIDS On The Brain.
Stress? Do ya think?!!? I mean especially since the New England Journal of Medicine had just published in 1987 it’s New York City Survival Study for patients with HIV and they determined that once diagnosed the five year prospects for survival were a mere 15%.
Fifteen percent.
I waited a full year after the Elissa test came out before I got tested and only did so once AZT had been approved as a treatment so that I could have it prescribed to me should I test positive. I mean, what was the point up till then of being tested if there wasn’t jack shit you could do about it I reasoned.
Ahhhh, and AZT — the gift that keeps on giving I call it. And by “giving” I mean not necessarily in a good way.
For it may have helped to keep me alive in those early years when it was the only HIV drug available but I have to wonder at the price its saving graces extracted from my body.
For you see AZT is an exceedingly toxic chemical compound that today is used to treat HIV in doses no larger than 300mgs per day.
But back then I was taking almost 3,000mgs per day! And so was everyone else who was on the drug because medical science had no idea how much AZT was effective in the treatment of HIV. And they also really had no clue about its toxicity.
So they figured more AZT must be better than less.
As my current doctor recently pointed out to me when I told him that I had taken that much AZT for almost 6 years,
“You and the few guys left alive like you are medical science’s study group for the long-term effects of mega doses of AZT. And frankly, I worry about you Scott, because we don’t really know what kind of nasty side effects you’ll suffer from it.”
You know, I always loved Guinea Pigs when I was a kid, but I never really wanted to be one.
March 12th, 2010 at 9:20 am
Scott,
Thank you for sharing this series of posts. There are too few survivors to share these stories, and without our history we are forgotten. I don’t think there is a gay man alive that matured in the 70’s, 80’s and even early 90’s that didn’t lose friends and most likely faced their own personal AIDS stories. But the context is becoming blurred, fear of death from AIDS has all but disappreared. Magazines make HIV treatments seem like a vacation (and given the alternative – well…) –
I’m grateful to have survived my youth, and I miss my friends. I have forgotten all that I have to be thankful for – #1 on the list is just breathing.
45 year old retired sailor-
Kelly from Portland Oregon.
March 12th, 2010 at 11:11 am
Thanks for the Post. Later there was the fear that the list of those positive would be released and Insurance companies would drop them. AIDS was the main reason NY improved the insurance market to prevent really sick gusy from being dumped from insurance.
I had hoped for the “public option” or better but any version of the plan will get the rest of the nation up to the NY level of protection. So here is hoping something passes.
March 12th, 2010 at 3:15 pm
Bill, thank you for for sharing with this group of posts. Gives a 30something girl from NZ an appreciation of what was really going on through that time, and helps me to greater recognition of what people – such as yourself and TeddyPig – had to go through to be as healthy as you are today.
March 12th, 2010 at 9:00 pm
Actually, ACT UP in those days was demanding that the FDA allow gay men be guinea pigs for HIV drugs.
After all, long term side effects were a small price to pay versus dying.
AZT is still useful. It helps prevent transmitting HIV from a mother to a fetus when the expensive drugs are not available.
March 13th, 2010 at 4:27 am
Scott I chose to be that Guinea Pig,
In 1990 I was admitted to the Henry M. Jackson Foundation at Bethesda Naval Hospital. You had to sign a freaking will the first day you were there dum dum duh dum.
It was rather bluntly explained to me I had 5 years tops to live. Was that an order? Jeez! The quack with a god complex, I mean the doctor, I was “discussing” this with who, thank god, was NOT TREATING ME said he would have put me on immediate HUGE doses of AZT if he got the chance. I have heard he killed lots of guys like that.
Thank you Doctor Nancy Ruiz wherever you may be for not doing crazy shit like that.
That never sounded right to me. Like they had “nothing else” so they were more than willing to “experiment on the sub-humans” since they could not cure the disease we had gotten from our “sick choice of lifestyle”. Yeah, that was the vibe with HIV+ personnel in the military so there you have it folks. Let’s experiment with the trained monkeys!
*I* instead (because they not only had documented my actual seroconversion with several blots they had run over a period of 3 months which was highly rare back then so they officially requested me) decided to submit myself for experimentation in a very early gp-160 study (or was it 120? I volunteered for so many I honestly forget. Anyway I think that was the official title I would have to look and see. I have that mess of documents around here some where.)
Anyway, we are talking spinal taps across the street at the NIH, frozen samples of my blood sent to different labs around the world and weird vaccine shots every 6 months and not knowing if you got the actual drug or not for something like 8 whole years. I got the actual drug by the way.
I did it and I did it gladly knowing I was taking a chance of escalating my own death but someone might benefit.
So here I am coming up on another anniversary this June. I still do not take any drugs and long ago stopped the ones I was briskly given (because they sucked physically and no one was monitoring me taking them) on the way out of the Navy after my medical retirement.
I smoke like a train, drink like a fish. I have done absolutely horrid things to my body while depressed, and no… I cannot tell you why I survived this crap this long and most of the guys I originally met at the HMJF are long gone last time I got the courage enough to check.
I don’t feel lucky at all and after everything is said and done I sometimes feel like that guy who crawled out of the rubble after the bombs went off. I simply chose a direction out and started walking.
March 13th, 2010 at 6:13 am
Re; the Guinea Pigs — Stay tuned Teddy.
March 13th, 2010 at 7:34 pm
Thanks again Scott for sharing this information with a generation that can’t possibly understand.
Teddypig- Thank you for participating, thank you for your service, and thank you for sharing.
Kelly
March 14th, 2010 at 5:47 pm
Hiya Scott,
Two things:
1. Was Elissa slang for ELISA? Honest, honest curiosity on that one.
2. Would you mind if I printed your posts and nailed them to my cube at work? I have a required reading wall for people in my office and I think this series definitely qualifies.
Cheers,
AP
March 15th, 2010 at 6:04 am
AP, Elisa stood or Enzyme-linked immunosorbent assay.
And feel free to do whatever you wish with any of these posts.
August 7th, 2010 at 4:52 pm
Thank you, from the bottom of my heart.
I was born in 1980, and had my first gay experience in 2004. Communities in all respects survive by virtue of the line of continuity passed down from older generations to the younger, and all the freedoms we enjoy today, all the benefits we have, were won on battles carried out by and on your minds, and bodies.
It’s baffling to see the cavalier attitude towards HIV infection today (maybe as a result of sensory overload) ,but in the light of what was, it’s simply disrespectful.
I guess what this inarticulate rant is trying to say is this: We need people like you to speak, and keep speaking…and again,on behalf of my generation,we thank you.