Posted by: Ele Quigan | July 21, 2012

‘And the band played on politics, people and the AIDS epidemic’ Randy Shilts

Its been a terrible summer here in London, which of course has meant a lot of time inside, a lot of floating about the internet and a lot of walking into Monday feeling like the weekend was barely there, as I’d be back in front of screen as if no time had past. Typical for me really.

Often during these times I end up playing almost like a version of the wikipedia game (you know how you start on one topic, and you’re still reading about something else, likely mildly associated, but something like 2-3 hours later. I actually really like involving myself into a topic like this, as 1: often it ends up filling up time, rather than a constant whinge about why it’s still raining, and 2: can inspire me to find new things to read about across the board – and generally increase my capacity for knowing something about everything.

A couple of weeks ago I came across a thread in Reddit (this one here actually) asking what it was like being an adult gay man in the 80’s through the HIV and AIDS epidemic.

I spent hours reading through the posts, reading just about every link that people shared, reading about the movements associated that were kicked off through the early stages of the epidemic, and found a few books to get off amazon that explained it further – one of these being ‘And the band played on’.

I didn’t know what to expect – I mean I was only born in 81 – my touch with anything to do with HIV is pretty much second/third hand or what the media tells me. I vaugely remember things about Princess Diana, that a lot of people were sick, Elton John, it was a huge problem in Africa, that there is no cure – but that was pretty much my limit. Through the thread I started to realise that there’s a massive generational difference between AIDS and HIV then and now, views/perspectives have changed.

I think that was what was hardest to bear throughout – the lack of support and understanding, plus the additional issues of funding, research, budget cuts within the early years, caused a devastating number of deaths –

Nearly all transmission of HIV through transfusion of blood or blood products occurred before screening of the blood supply for HIV antibody was initiated in 1985

CDC (Centres of Disease Control and Prevention)

It was in the late 1982 that they saw that there was a transfusion risk, yet testing on the blood supply wasn’t initiated until 1985. I didn’t realise that ‘blood’ was essentially something people made money from. I’m totally ignorant of the pharmaceutical industry to be honest, so didn’t think that things like factor VII (Haemophiliac medication) was essentially a massively profitable industry. Across the world, at least in the areas mentioned in the book, this factor VII was supplied in large quantities from the US, and the blood companies were loath to reduce their overall profits – but also in the early years the supply of donors.

This book made me so angry.

It’s a chronology up to 1st May 1987 – and I almost think that’s the worst part – it stops so early into the epidemic. Ronald Reagan did nothing in those early years, the first time he publicly spoke was in late 1987 – by which time thousands had died. The Republican’s reduced budgets across the board, stymied conversations/requests continued on a line of what almost feels like they thought it would go away, matched with a prejudice against homosexuals – that in some senses make it look like they considered it a moralistic illness.

Although AIDS was first reported in the medical and popular press in 1981, it was only in October of 1987 that President Reagan publicly spoke about the epidemic. By the end of that year 59,572 AIDS cases had been reported and 27,909 of those women and men had died. How could this happen, they ask? Didn’t he see that this was an ever-expanding epidemic? How could he not say anything? Do anything?

(ACTUP NY)

With the generational gap from then to now, or even then to the 90’s you can see a constant prejudice (or even fear of prejudice) throughout the epidemic. I think that’s what leaves me questioning the most, and it’s really hard to articulate – but how things that would have helped (closing the baths for example) were met with anger and protest from the community (see Dr. Mervyn F. Silverman, director of San Francisco’s Department of Public Health) and that requests for funding or research were met with Universities that didn’t want their name tarnished with the epidemics wide reaching brush.

AIDS NAMES quilt
Oh if it had only been an illness that effected the white middle-class heterosexual female, things would have been different. And to a point – there’s been an example of it. The funding spent to investigate the Chicago Tylenol murders greatly outweighed what was spent on the epidemic until the mid-80’s.

The chronological style of the book is a constant stream of infection and death. Interspersed with these personal moments, there’s a cloud hanging over the lack of support, as you can see the at times gentle, at times almost-violent demise of these people amongst friends and family. The psychologists who spent their time counselling young men who had been given such a short time to live, while they were suffering themselves, to die without hope. (I’ve found the obituary for Gary Walsh here) The young men who spent some of their favourite times of their lives at Fire Island, who returned year after year only to find out who had died, who’d ‘got sick’, ever watching for a tell-tale purplish spot. The grandmother who confused doctors after her surgery, why she had recurring severe Candidiasis and finally pneumocystosis before she was properly diagnosed (her family were the first to sue that the blood industry were aware of the problem yet were still not making any changes to stop the stream of infected blood by testing it). Larry Kramer who stood up in the early stages of the crisis demanding action – his list of 20 friends haunts me to my core – it almost feels asinine to say, but look at your FB friends list – your closest and not so closest circles, and imagine a few slowly becoming sick, weak, hearing they aren’t coming out tonight as they’re tired. Hearing snippets through other friends about their swollen glands, their near-constant diarrhea, their visits to hospital and inability to breathe. Some of their urgent need to have hope for a cure, heading to far flung places to search out help, only to return and fade out.

I can’t comprehend it. At all.

Randy himself (the Author) died after being diagnosed. He lived to see his book published – and after all his rearch, his reporting on the epidemic, he was one of the many taken.

We’re missing a genration. A generation of leaders, of change makers, of people who would have pushed out the prejudices of today – have you seen how many have died? Have you seen how many have been infected?

Is there hope, is there change?

Why is it still stigmatised it as a Gay/African/Prostitute/Notmyproblem kind of disorder?

Here are some hard stats on the epidemic now published by UNAIDS, WHO and UNICEF
People living with HIV/AIDS in 2010 34 million
Proportion of adults living with HIV/AIDS in 2010 who were women (%) 50
Children living with HIV/AIDS in 2010 3.4 million
People newly infected with HIV in 2010 2.7 million
Children newly infected with HIV in 2010 390,000
AIDS deaths in 2010 1.8 million

As I’m writing this post – I can’t stop the tears rolling down my face. While there are drugs and education now, I still can’t get over how many people are still dying. Still being infected. And that to date I’ve done nothing at all to help – because it’s not something that’s touched me personally – that changes today.

I want to leave you with the first few paragraphs of an article written by activist and author Larry Kramer, there’s a link to the rest of it below – I implore you to read the whole thing. What upsets me the most? Look at the comparison numbers. At this stage only 418 had died. now – 12 times that die every single day.

1,112 and Counting
by Larry Kramer

[first published in the New York Native, Issue 59, March 14-27, 1983]

If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get.

I am writing this as Larry Kramer, and I am speaking for myself, and my views are not to be attributed to Gay Men’s Health Crisis.

I repeat: Our continued existence as gay men upon the face of this earth is at stake. Unless we fight for our lives, we shall die. In all the history of homosexuality we have never before been so close to death and extinction. Many of us are dying or already dead.

Before I tell you what we must do, let me tell you what is happening to us.

There are now 1,112 cases of serious Acquired Immune Deficiency Syndrome. When we first became worried, there were only 41. In only twenty-eight days, from January 13th to February 9th [1983], there were 164 new cases – and 73 more dead. The total death tally is now 418. Twenty percent of all cases were registered this January alone. There have been 195 dead in New York City from among 526 victims. Of all serious AIDS cases, 47.3 percent are in the New York metropolitan area.

These are the serious cases of AIDS, which means Kaposi’s sarcoma, Pneumocystis carinii pneumonia, and other deadly infections. These numbers do not include the thousands of us walking around with what is also being called AIDS: various forms of swollen lymph glands and fatigues that doctors don’t know what to label or what they might portend.

The rise in these numbers is terrifying. Whatever is spreading is now spreading faster as more and more people come down with AIDS.

And, for the first time in this epidemic, leading doctors and researchers are finally admitting they don’t know what’s going on. I find this terrifying too – as terrifying as the alarming rise in numbers. For the first time, doctors are saying out loud and up front, “I don’t know.”

For two years they weren’t talking like this. For two years we’ve heard a different theory every few weeks. We grasped at the straws of possible cause: promiscuity, poppers, back rooms, the baths, rimming, fisting, anal intercourse, urine, semen, shit, saliva, sweat, blood, blacks, a single virus, a new virus, repeated exposure to a virus, amoebas carrying a virus, drugs, Haiti, voodoo, Flagyl, constant bouts of amebiasis, hepatitis A and B, syphilis, gonorrhea.

I have talked with the leading doctors treating us. One said to me, “If I knew in 1981 what I know now, I would never have become involved with this disease.” Another said, “The thing that upsets me the most in all of this is that at any given moment one of my patients is in the hospital and something is going on with him that I don’t understand. And it’s destroying me because there’s some craziness going on in him that’s destroying him.” A third said to me, “I’m very depressed. A doctor’s job is to make patients well. And I can’t. Too many of my patients die.”

After almost two years of an epidemic, there still are no answers. After almost two years of an epidemic, the cause of AIDS remains unknown. After almost two years of an epidemic, there is no cure.

Hospitals are now so filled with AIDS patients that there is often a waiting period of up to a month before admission, no matter how sick you are. And, once in, patients are now more and more being treated like lepers as hospital staffs become increasingly worried that AIDS is infectious.

Suicides are now being reported of men who would rather die than face such medical uncertainty, such uncertain therapies, such hospital treatment, and the appalling statistic that 86 percent of all serious AIDS cases die after three years’ time.

If all of this had been happening to any other community for two long years, there would have been, long ago, such an outcry from that community and all its members that the government of this city and this country would not know what had hit them.

Why isn’t every gay man in this city so scared shitless that he is screaming for action? Does every gay man in New York want to die?

Full article here. http://www.indymedia.org.uk/en/2003/05/66488.html

It’s World AIDS Day 1st December – I’m going to get a red ribbon and do something – Are you? http://www.worldaidsday.org/

I’ve included a lot of links in this post – in case you want to read them later here they are, plus a few more.
http://www.playbill.com/news/article/150172-Letter-from-Larry-Kramer-Distributed-Following-Normal-Heart-Performances
http://andrewsullivan.thedailybeast.com/2012/06/how-to-survive-a-plague.html
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5021a2.htm#fig1
http://www.williamapercy.com/wiki/images/The_AIDS_Epidemic.pdf
http://www.kieranhealy.org/files/papers/ts.pdf
http://www.actupny.org/reports/reagan.html
http://www.avert.org/worldstats.htm#
and here’s the source for the image http://photos.igougo.com/pictures-photos-p468379-AIDS_Names_Quilt_in_front_of_the_Rose_Bowl.html

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  1. […] been reading a lot about AIDS lately. I was at times amazed and horrified while reading this, and am still really eager to read all I can. When this popped up as a new book about it, I […]


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