(Lest We Forget)
(Transcript of interview of Andrew Sullivan by Anderson Cooper - CNN)
(COOPER) How difficult is it, you think, to explain what happened in the 1980s and also, it's important to point out, that the 1990s as well, to people who didn't live through it, who weren't bearing witness to the deaths of friends and lovers, to the fear, and… and the vitriol and injustices, and uncertainties that defined that decade for so many gay Americans, and others.
(SULLIVAN) Well, you know, it's hard for us, who survived it, to remember quite just how terrifying it was. I remember the time when I was diagnosed talking to my then boyfriend who had also just been diagnosed, and telling each other, “Whatever happens, if this does work out, if we do survive this, can we please never forget how terrified we are right now?
“It was a terrifying time. This was not just a single disease, it was a multiplicity of diseases. All of which were horrifying, whether the friend of mine who just woke up one morning and couldn't tie his shoelaces because he had toxiplasmosis in his brain.
A friend of mine woke up one day and found that he was… He couldn't hold in his food at all, and slowly starved over the next year or so because of cryptosporidium, a small, little parasite in the water that’s still there and most people can tolerate, or suddenly sores’’’ or you can't breathe. Anything could come out at you. It was like being in a jungle waiting for something to come out and snare you … and there was no cure. There was no treatment.
So we were all just waiting to die. And it built, it built, and gee…. More and more of us would die. I mean, I had dated four people who died. My best friend, who was diagnosed roughly the same time as I was; and died two years later, and I'm still sitting here 23 years later.
So, there was also a lot of guilt of survival, but also… just an incredible solidarity among gay men and lesbians, and our families, at least some of our families, in confronting what was just an overwhelming and omnipresent threat.
(COOPER) I mean I was in high school and, you know… 81 to 85 in the early years and had just, you know, was just coming out to friends with just, you know, sort of accepting myself. And I just remember the fear of not knowing how it's transmitted, the fear of… that… that kept one almost isolated, physically, from other people, because you just didn't know what the route of transmission was.
(SULLIVAN) No, you didn't. And you just knew also that it was affecting primarily gay men, so it was really hard not to internalise it as some sort of fun thing that we deserved. I mean… that's what we’ve been told our entire lives. That's what the culture was telling us.”
(COOPER) And that message was also being given out by thinkers of the day… by folks on TV.
(SULLIVAN) Well, Patrick Buchanan famously said that homosexuals have declared war on nature, and now nature has declared war back on them. Even the Vatican was putting out things saying, implicitly, that somehow we had caused this to happen to ourselves. And the stigma of a plague affecting you, as long, as well as this isolation of it, as a community.
I mean, I went to work every day, even while I saw people dying, and my straight friends and colleagues, in various places that I worked, had no idea of what was happening. And the sheer pain and terror of it was hard to convey. I mean the sheer, extreme misery of dying, it was not an easy death.
And these people were dying in their 20s and 30s. Their parents were, sometimes, disowning them. Their spouses or their boyfriends, or their partners, were suddenly thrown out of hospital rooms. They lost their apartment. It was chaos and… and terrifying at the same time.
And remember, I mean, overall, something like three to 400,000.Americans, mainly young Americans, died in a period of around a decade. And you compare that to the Vietnam War, around 60,000 young people died at the same, in the same time period. This was a catastrophe that was at the same time invisible to so many people.
(COOPER) Which just adds to the horror and the seriousness of it. I mean, one of the remarkable things, looking back, is the extent to which gays and lesbians and transgender people did start to care for each other, in a way, I don't know if we have seen that before with other groups in, you know, in any kind of similar circumstances. I mean that kind of abandoned in many cases by governments, abandoned by families. People reached out to each other. Friends became family.
(SULLIVAN) It was the worst of times in so many ways, but it was also the best of times in the sense that we really banded together. We knew we had to do this ourselves. I was a volunteer to take care of someone who died. We had volunteers to look after people who were alone. We really pulled together. We also realise.I think, and this was crucial, that we couldn't succeed against this by ourselves.
The small urban ghettos which had been great avenues for liberation were not sufficient to get us the treatments, the access and the new protections that we needed to confront this epidemic. So, it made us grow up very, very quickly. It made us reach out to straight America, to begin a conversation, a serious conversation, about something that people was still extremely scared of even talking about.
And that opened up, I think, you could look back and say that the gay civil rights movement, that really blossomed in the last 10 years, began right there in the ashes, from the ashes, of our dead brothers, and some sisters.
(COOPER) Also, I mean, all Americans have benefited from the innovations that, largely gay people, groups like ACT-UP, and from Peter Staley and others, you know, protested for to get drug companies to change the way drugs are brought into the pipeline. I mean, everybody had benefited because of the changes that were made.
(SULLIVAN) Yes, the FDA streamlining was absolutely vital, for new diseases too. But also, the culture that we developed about disease, such as, If you're a patient, you don't have to be passive. You have to take control of your disease, you have to own it, and you have to figure out your way of surviving.
And so, I think the AIDS epidemic goes to transform the nature of health in this country. Where people no longer were passive and waiting for other people to help them, but took it into their own hands and decided we're going to survive this ourselves.
I remember interviewing doctors to find out which was the best one. I remember reading every study that came out in the scientific press to see if there was a way forward. You became much more proactive, much less afraid of medicine and much more dedicated than making medicine work for you and other people.
And I think that's affected cancer, that's affected a whole range of things, as well, of course, the discoveries that we found, the first time in human history solving a retrovirus, the things that it is, it is unleashed for other diseases, like Parkinson's, like cancer, a whole variety of them that, that the methods and the science that was unlocked here was able to do.
I remember, it was a battle against time. It was only because we've got new computer graphics generation that we were able to speed up the search for protease inhibitors 20 times from the past.
So it was a combination of new technology and new attitudes to help transform this disease from a plague into something that now the younger generation, in particular, hardly even cognizant at all.
(COOPER) Well, I mean that's the thing. And it gets back to the thing you have said to your boyfriend at the time, which is, you know, don't let, let us not forget. You worry that, the more years that pass, that now that HIV, thankfully, you know, is a chronic condition, but still a life altering condition, that does… Do you fear that people have forgotten, particularly the young, young gay men, particularly, those who are the most vulnerable, and most vulnerable communities?
(SULLIVAN) I have two feelings. One is that I am just thrilled, like anybody who lived through that time would be thrilled, that they don't have to worry the way we had to worry. It is not a diagnosis the way it was in the 80s or 90s.
At the same time, I'm kind of staggered at how there's almost no memory of this. There's been a complete amnesia about it. The younger generation aren't even interested. But there are no memorials.
(COOPER) That stuns me. I mean, do you think that the quilt, which was this incredible thing, you know, that hasn't been displayed in decades, I think, and there are no memorials, there are no monuments to those… the generation of people who died.
(SULLIVAN) Well, partly because they died. I mean the generation above you and me is devastated. There's almost no one in it. So the people that might have remembered are the people who died, which gives it more imperative to those of us who did survive, to keep the memory alive.
But I can't tell you how dispiriting it is, the thought that young gay men seem almost bored by these old stories and wanting to move on. And… I understand how wonderful it is to live in an era in which this kind of horrifying disease is no longer the reality.
But not to remember the hundreds of thousands of young men who died? Not to remember their struggle? Not to see them as integral to our current moment? Who created this gay culture that we live in today, so, so mainstream, so integrated. It seems to me a crying shame, and I think that many of us in the gay community want to revive that sense of memory, and to honour the people who died, just as we honour the victims of the Vietnam war, honour the war dead.
We have no memorials for our plague dead, and we need to, we need to recover that history.
And I think, things like this documentary will help bring to people the sense that it was so frightening, and so devastating, and so tragic for so many people. And yet, we’ve pulled through.
(COOPER) And also a reminder of the importance of getting tested if you don't know your status, or you think you know, you still getting tested regularly and… and if you are HIV positive to get treatment, because treatment is life saving.
(SULLIVAN) And if you're HIV negative, to get on PREP, get on this pill. If someone in 1990 had said to us, here's a little pill, you can take one pill a day, it will prevent you from ever getting HIV, there would be no debate about it, we wouldn't be worrying about whether it stigmatises us. We would be around the block for this drug.
And so, every HIV infection today, in some ways, is a failure with respect to those who died and who deserve better, and I think, I think the knowledge that we now have the ability, through both PREP and through treatment, to actually end this epidemic forever in the gay community, and yet we're not doing it is the real challenge for today. We can, for their sake, end this forever.
(COOPER) For those who don’t realise it, If you are positive and on medication, you cannot transmit the virus. If you are not positive, but sexually active and at risk, and you're on PREP, you also cannot get the virus. So you are effectively ending the transmission route.
(SULLIVAN) Yes, and epidemiologically you just need a little bit on both sides to constrain the spread of it, and we could end this forever within the gay men, and it would not be a terror anymore. We have that opportunity right now, and I think we owe it to those who died to seize it.
Andrew Sullivan, thank you.
(SULLIVAN) You bet.
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