In Tens: Q&A with Larry Kramer
BY Bob Adams
September 01 2008 12:00 AM ET
Simply put, AIDS activism owes its existence to outspoken'some would say cantankerous'author, playwright, and gay rights pioneer Larry Kramer.
As the founder of ACT UP in 1987, Kramer helped coordinate and participate in countless protests demanding'and ultimately gaining'access to experimental anti-HIV drugs, lower prices on existing meds, and speedy development of new treatments. ACT UP's successes led Anthony Fauci, director of the National Institutes of Allergy and Infectious Diseases, to say of Kramer, 'In American medicine there are two eras: before Larry and after Larry.'
Kramer also was one of the six cofounders of New York's Gay Men's Health Crisis, launched in 1982 as the world's first AIDS service organization, which continues to be a global leader in the fight against the disease today.
Now 73 and completing a new book titled The American People, Kramer talks about his years with ACT UP, today's dearth of activists, and his concerns for the future.
Is AIDS activism dead today?
Yes, and no. The kind of activism that got results, as represented primarily by ACT UP, is dead. There is still an ACT UP meeting once a week, but it's such a shadow of its former self, a vestige of another era. The great days of AIDS activism are no more. What exists today are a number of people working in AIDS, most of them in organizations for which they receive a salary or are part of the system'drug companies, government agencies, that sort of thing. I think a lot of those people came out of AIDS activism, came out of ACT UP, but I don't consider what they do as AIDS activism. They're doing their jobs and aren't able to say what they want to say most often. In terms of there being any activity that results in change or in a visible demonstration of our power, that doesn't exist anymore.
What was different in 1980s and 1990s that fueled activism then?
Early activism was based, pure and simple, on fear. Everybody was afraid. Without fear, activism doesn't work. That goes for the whole prevention issue as well. And we were scared shitless then. That's why ACT UP in 1987 was more effective than Gay Men's Health Crisis, which started in 1981-1982'GMHC wasn't frightened enough.
Much of early AIDS activism was aimed at getting better and cheaper medications. HIV treatment is very good today. Did the emergence of better drugs play a roll in the fall-off of activism?
Yes, we were working for treatments, but there wasn't any treatment out there at all when we first started. We also had to learn a great deal before we could produce results. Activism, to be successful, requires you to do a lot of homework to what you're being active about. It also requires you to do it every day without stop. And those two things also helped defeat activism, because most people today aren't prepared to spend the kind of time it requires.
Have we today lost the fear that fueled ACT UP or have we simply become too lazy to keep up the fight?
I think it's deeper than just laziness. Lazy is an OK word, but I'd use passive. The gay population'I don't use the word community, because there are too many different parts to be a community'has been invisible and passive since day 1. We have neverfought with the numbers we have at our disposal to fight. Even ACT UP in its heyday probably didn't include more than 10,000 people coast to coast. In New York, there were just a couple of thousand. And yet, those 10,000 people, working with people from groups like Project Inform, were able to obtain every single HIV treatment out there today. We were able to achieve mighty results with relatively few people, especially when we through there were 24 million gay people [in the United States at the time]. Very few fought, even at the height of dying. As long as I live, I will never understand that. New Yorkers were dropping like flies, but why everyone didn't come to GMHC or ACT UP is beyond me.
When you talking about the drugs that are available, it raises a question about what some call 'treatment optimism''a sense that the meds are so good that HIV infection isn't a big deal. How do you think that affects HIV prevention?
The drugs out there now are quite good. In fact, the newest one out there, Isentress, is quite brilliant. I'm on that, with others, and the way I feel is noticeably better than on the drug it replaced, which was yucky Videx. But I think drugs like that make it very difficult to have successful prevention efforts because they're so good. The meds are fine, and you can get them. There's no fear anymore about getting infected. I don't know how you can have successful prevention efforts without having people concerned about becoming infected.
It also seems like gay men are engaging in risky sex at high rates again. New CDC data show that the HIV infection rate is rising among gay men, particularly young gay men. And we're always hearing about crystal meth use and barebacking and all kinds of other behaviors that are linked with HIV. You talked about how some of those very some behaviors 30 years ago in your book Faggots. Have gay men learned nothing those 30 years? How is it that we're in the same place 30 years later?
If I knew the answer to that, I'd be a very wise man. I don't know why we behave the way we do, but we do. It's much like the way I don't know why [gay men and lesbians] are still unable after 30 years to come together to fight for our full equality. I don't know why so many men and women are chronically unable to join forces and fight back against our oppressors, who are many and mighty. I just don't know why. Unfortunately, we get what we deserve, which is an awful thing to say and I hate myself for saying it. But if we're not out there fighting, what do we expect?
So you think that gay men and lesbians are partially to blame for not having achieved full equality?
In my book Reports From the Holocaust: The Making of an AIDS Activist, I talk about [German-Jewish political scholar] Hannah Arendt, who wrote about situation of Jews following the Holocaust and how it was allowed to happen to them. She said many of the same things'that the Jews just never fought back, that the worse things got the more invisible they became, yet they had all these numbers and potential power. It's the same thing with gays, but they don't want to hear that.
But that really is a truth. Why don't we want to hear it?
The truth is difficult to deal with, especially when the alternative is to take a bunch of drugs and go out dancing every night.
Maybe you're the person who can get them to deal with the truth.
I cannot tell you how many people who write to me and stop me on the street tell me to go out there and do all this stuff again. But I'm just not going to do it again. There's no point. We tried to get ACT UP going again on our [20th] anniversary [in March 2007]. I made a couple of major speeches and wrote a book called The Tragedy of Today's Gays. And a lot of people came to hear me speak, but nobody showed up for the next meeting.
What else has changed between the days of ACT UP in the 1980s and 1990s and today that may have played a roll in the drop in interest in activism?
The Internet has had a very peculiar effect on activism. In one way, it's useful because it allows people to have access to all kinds of information whenever they want that access. But it doesn't provide that essential feeling of togetherness, of being with a group, of fighting together. Some of the most meaningful years of my life were in the formative years of GMHC and ACT UP, when hundreds of us were fighting shoulder-to-shoulder and side-by-side. It's an incredible feeling to be a part of all that, and that doesn't' exist on the Internet. So we're minus an important impetus-building tool.
What's your response to the theory on the death of activism that Americans have simply become so selfish that if something, like AIDS, doesn't directly affect them they couldn't possibly care less about it?
I think that idea of not caring about something that doesn't affect you is true of all people. Life is hard. Even if you're a success or have a lot of money'and especially if you don't, which most people don't'life is very difficult. So it takes an extra bit of energy to go out there and fight for issues. That's never been an American thing to do, somehow. In other countries, perhaps more so. But it's just not what Americans do; they never have. I believe it would be interesting to go back to see how many people actually fought or were involved in the American Revolutions. It's probably far, far fewer than the history books lead us to believe.
I also feel that Americans don't think about AIDS as much as they used to. It's like we talk about the pandemic on World AIDS Day or we think about HIV testing on National HIV Testing Day, but otherwise put AIDS back on the shelf until next year's events.
I don't think we think about AIDS at all, even on those days you mentioned. It's gone out of everybody's vocabulary. It's one of those things that's there, but not there. You don't see stories about AIDS in America anymore in any newspaper. You see stories about AIDS in Africa. I haven't even seen much about the [recent Centers for Disease Control and Prevention showing a significant] rise of infections in gay men. Maybe a squib here or there, but not on the front page with a banner headline like it should be. I don't know. People tell me we've made a lot of progress, but I just don't see it. I'm sure this interview is going to get a lot of flack for being so negative, but I call 'em as I see 'em. And I don't see us getting anywhere. I don't see us making progress.
I know from my research that you that you believe the federal government did little or nothing in the earliest days of the pandemic because gay men were the people who were infected and dying. Do you feel the government is still not doing enough on AIDS?
I just don't think that anybody in real power gives a shit about AIDS, and that starts with the president. And it's always been that way. What we have managed to get is because we fought for it. And we're not out there fighting now.
What are some of the things we should be demanding of the government today?
There are a lot of issues still not dealt with, one of the most important being that no one is paying attention to the future. How long can we take these drugs? What are we doing to see how they affect our systems? I just heard dreadful news that doctors are beginning to see in people taking Viread that their bones are deteriorating. Now, this happens to be of particular interest to me because not only do I take Viread, but five years ago I was able to have a test to see how much Viread was in my system and discovered I had 5 times the amount of the drug in my system that I needed. My doctor promptly cut me back to taking Viread just once every five days. That was a scary thing to find out, and it made me realize that everyone is probably taking too much of every single drug, but we don't know because we're not testing to see how much of them we have in our systems, in our blood. And those tests are available! I put that to [Dr. Anthony Fauci, director of the National Institute for Allergy and Infectious Diseases] the minute I found out, and he said he'd begin studying it. That was five years ago. Every time I ask him about it now, he dodges the issue. We cannot take these drugs forever, and no one is even trying to deal with this information, certainly not the government.
I've never heard of this before. I'm really surprised the government hasn't done something with the information.
Not only that, but the drug companies aren't either. The drug companies want to make sure you take as much as they want you to. When I confronted [Viread maker Gilead Sciences] with my information, they were uninterested. And you not only have drug companies insisting on selling us as many drugs as they can, the doctors are also on the payroll of the drug companies. Our doctors! Our AIDS doctors! Something like 80% of them take honorariums from drug companies to appear places, give speeches or attend conferences, so of course the doctors aren't going to confront the drug companies. So in essence, we're not even being protected by our own doctors. The state of HIV medicine sucks. We think everything is hunky dory just because our lab tests are OK. And it's not.
In light of issues like that, why aren't we paying more attention to AIDS at home? Why do we rarely hear about the domestic AIDS epidemic anymore in the media?
AIDS has become an African issue, a Third World issue. All the money is now going there. Dr. Fauci spends too much time in Africa and flying all over the world, and not enough time on the home front. No one is minding the store. No one is ever minding the store. Why are we paying more attention to Africa? Because it doesn't involve homosexuals. This country hates homosexuals. Hate is a very strong word, and I talk about it in The Tragedy of Today's Gays. People don't want to admit this, but they do. This country is not comfortable with us, and we're not effective at ramming ourselves down their throats, which is what it takes to get them to consider us. We thing it's better to be passive and not to fight back. Who likes to fight? Every gay boy has been beaten up enough on the playground that he doesn't want t to go out and fight as an adult.
Speaking of gay men, what's your response to people'including some gay men'who think that those who get infected in this day and age deserve to be HIV-positive because they knew how to protect themselves but didn't?
I have sympathy for that feeling, I'm afraid. Actually, so does one of my doctors'one of the first doctors in New York to work with gay men who had AIDS. When a young kid who has been well-educated and has a job and has a lot of good things in his life comes in with a new HIV infection, my doctor says to him, 'Get out of my office. Go find another doctor. You should have known better!' And he won't treat them. I have to say, one of the most depressing moments of my life was after ACT UP fought so hard to get all those drugs, and we began to discover people were going back to live the same lives we lived before and do the same things we did before [like engaging in unprotected sex, having multiple sex partners, and using drugs]. It's like we didn't have all those fights and hadn't lost all those people in vain. It was very sad, and I still feel that way. I don't see much out there in the gay world to be proud of, frankly.
I don't know if you know him, but Jim Pickett at the AIDS Foundation of Chicago believes one of the reasons we're still losing the fight against AIDS is because we don't talk openly about sex. He says, 'Fucking and getting fucked feel good, but when was the last time you heard a prevention program say that? Never, because they can't.'
Why can't they?
Because the CDC won't fund programs that they believe promote sexual activity.
Ah, the Helms amendment. But you know, just about every kind of HIV prevention program has been tried somewhere or other. We've had ones that talk about sex, ones that frightened people, and I don't think any work sufficiently well. I don't think we should stop trying, but I don't think we should expect them to be as effective as we want them to be. People make love. People have sex. And that's simply not going to change. The lives we lead, I'm afraid they're going to say the same. I don't know how to stop all that. But everyone is constantly flagellating themselves or other organizations that their prevention programs are shit, but we have to face the reality that none of them are every going to be what we hope they will be.
What do you think have been the pivotal moments in the fight against AIDS since the mid 1990s? Are there any?
I think the greatest thing that the gay population has ever achieved in its entire history was obtaining HIV treatments. Period. It's going to take an awful lot to top that. And it was achieved by very few of us. That's the last defining moment in our history, and I expect it to main the last defining moment in our history unless 12 million to 24 million or however many million [gay men and lesbians] march and demand our equality'not just visibility but full equality'which I never see happening. We should have everything that straight people have, but we're not demanding it. We simply aren't. And then you have to say, 'OK, you got what you deserve because you accepted it.'
It's true that ACT UP was pivotal in getting HIV treatments that have saved millions of lives. But looking back on your involvement with the group, is there anything you would have done differently?
A big mistake was my quitting GMHC in 1983. I was so mad at them for being too passive that I though if I threatened to quit they'd shape up. But they didn't, and I lift. That was a huge mistake, and [GMHC] proceeded to become one of the truly powerless AIDS organizations only until fairly recently. They lost many years to being just quiet nurses aides and having no activism at all. GMHC should have been what ACT UP became later. If I had stayed there, I could have hastened that along more. We also made some mistakes in ACT UP. It took us a while to identify the specifics so we were able to go out there and effectively fight the government. For the first couple of years, we just protested'the church, the NIH, all that. We didn't acquire the knowledge we needed until later.
You've been pretty much the voice of AIDS activists for nearly 30 years now. What are your future plans?
I'm writing a book called The American People, and it's basically a history of America starting with the monkeys in the Everglades, through the year 2000. It's a history of America that puts gay people back into it ' with George Washington being gay and his love for Hamilton and Lafayette, and Lincoln being gay. I'm identifying through history who [gay people] were and who are our enemies. As I'm coming up to the present time, there's so much that makes me angry, so much time that was wasted. Why did it take so long'15 years'for protease inhibitors to reach us? Why did [HIV co-discovered Robert] Gallo sit on the HIV test for three full years before he released it? That is an evil deed. People could have been saved with that test, but he wouldn't release it because he hadn't been declared the winner in the game that gave him royalties from discovering the virus'if he actually did, which I don't believe is the case. Why did everything take so long? What the fuck did Fauci do when he went to his office every day from 1984 when he got the job until 1995 when protease inhibitors came out? What were these people doing? It's amazing when you take it day-by-day, week-by-week, year-by-year, how much fucking time was wasted.
I guess as a way to wrap up, what is your take on the future of AIDS activism? What's one of your biggest concerns?
AIDS activism doesn't exist today, so I don't know what the future will be. I would say the same for gay activism. I see precious little of that today. You know, I go around to a lot of colleges to talk, which is a very interesting experience for me but also a very frustrating one. I say to them, 'Your generation is very passive.' And they say, 'We know it.' They don't even ask, 'What should we do about it?' It's something they accept. They're taught in schools not to make waves, not to be the kid who asks in-your-face questions or is nosy. Everyone is taught that in school, and the more expensive the school the worse it is. They're afraid of stepping out of the herd. Everyone has to dress alike, think alike, act alike. No one wants to be in your face like me. Why in this entire plague has there been so few Larry Kramers? Why am I the one everyone turns to, even now? I'm 73 fucking years old, for God's sake! Where is everybody else? Who are our leaders? Where are the young ones? It's totally scary.