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 , 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?
Let's talk about a few things specifically.
· Let's talk about which gay men get AIDS.
No matter what you've heard, there is no single profile for all AIDS victims. There are drug users and non-drug users. There are the truly promiscuous and the almost monogamous. There are reported cases of single-contact infection.
All it seems to take is the one wrong fuck. That's not promiscuity - that's bad luck.
· Let's talk about AIDS happening in straight people.
We have been hearing from the beginning of this epidemic that it was only a question of time before the straight community came down with AIDS, and that when that happened AIDS would suddenly be high on all agendas for funding and research and then we would finally be looked after and all would then be well.
I myself thought, when AIDS occurred in the first baby, that would be the breakthrough point. It was. For one day the media paid an enormous amount of attention. And that was it, kids.
There have been no confirmed cases of AIDS in straight, white, non-intravenous-drug-using, middle-class Americans. The only confirmed straights struck down by AIDS are members of groups just as disenfranchised as gay men: intravenous drug users, Haitians, eleven hemophiliacs (up from eight), black and Hispanic babies, and wives or partners of IV drug users and bisexual men.
If there have been - and there may have been - any cases in straight, white, non-intravenous-drug-using, middle-class Americans, the Centers for Disease Control isn't telling anyone about them. When pressed, the CDC says there are “a number of cases that don't fall into any of the other categories." The CDC says it's impossible to fully investigate most of these “other category" cases; most of them are dead. The CDC also tends not to believe living, white, middle-class male victims when they say they're straight, or female victims when they say their husbands are straight and don't take drugs.
Why isn't AIDS happening to more straights? Maybe it's because gay men don't have sex with them.
Of all serious AIDS cases, 72.4 percent are in gay and bisexual men.
· Let's talk about “surveillance."
The Centers for Disease Control is charged by our government to fully monitor all epidemics and unusual diseases.
To learn something from an epidemic, you have to keep records and statistics. Statistics come from interviewing victims and getting as much information from them as you can. Before they die. To get the best information, you have to ask the right questions.
There have been so many AIDS victims that the CDC is no longer able to get to them fast enough. It has given up. (The CDC also had been using a questionnaire that was fairly insensitive to the lives of gay men, and thus the data collected from its early study of us have been disputed by gay epidemiologists. The National Institutes of Health is also fielding a very naive questionnaire.)
Important, vital case histories are now being lost because of this cessation of CDC interviewing. This is a woeful waste with as terrifying implications for us as the alarming rise in case numbers and doctors finally admitting they don't know what's going on. As each man dies, as one or both sets of men who had interacted with each other come down with AIDS, yet more information that might reveal patterns of transmissibility is not :being monitored and collected and studied. We are being denied perhaps the easiest and fastest research tool available at this moment.
It will require at least $200,000 to prepare a new questionnaire to study the next important question that must be answered: How is AIDS being transmitted? (In which bodily fluids, by which sexual behaviors, in what social environments?)
For months the CDC has been asked to begin such preparations for continued surveillance. The CDC is stretched to its limits and is dreadfully underfunded for what it's being asked, in all areas, to do.
· Let's talk about various forms of treatment.
It is very difficult for a patient to find out which hospital to go to or which doctor to go to or which mode of treatment to attempt.
Hospitals and doctors are reluctant to reveal how well they're doing with each type of treatment. They may, if you press them, give you a general idea. Most will not show you their precise numbers of how many patients are doing well on what and how many failed to respond adequately.
Because of the ludicrous requirements of the medical journals, doctors are prohibited from revealing publicly the specific data they are gathering from their treatments of our bodies. Doctors and hospitals need money for research, and this money (from the National Institutes of Health, from cancer research funding organizations, from rich patrons) comes based on the performance of their work (i.e., their tabulations of their results of their treatment of our bodies); this performance is written up as "papers" that must be submitted to and accepted by such "distinguished" medical publications as the New England Journal of Medicine. Most of these "distinguished" publications, however, will not publish anything that has been spoken of, leaked, announced, or intimated publicly in advance. Even after acceptance, the doctors must hold their tongues until the article is actually published. Dr. Bijan Safai of Sloan-Kettering has been waiting over six months for the New England Journal, which has accepted his interferon study, to publish it. Until that happens, he is only permitted to speak in the most general terms of how interferon is or is not working.
Priorities in this area appear to be peculiarly out of kilter at this moment of life or death.
· Let's talk about hospitals.
Everybody's full up, fellows. No room in the inn.
Part of this is simply overcrowding. Part of this is cruel.
Sloan-Kettering still enforces a regulation from pre-AIDS days that only one dermatology patient per week can be admitted to that hospital. (Kaposi's sarcoma falls under dermatology at Sloan-Kettering.) But Sloan-Kettering is also the second-largest treatment center for AIDS patients in New York. You can be near death and still not get into Sloan-Kettering.
Additionally, Sloan-Kettering (and the Food and Drug Administration) requires patients to receive their initial shots of interferon while they are hospitalized. A lot of men want to try interferon at Sloan-Kettering before they try chemotherapy elsewhere.
It's not hard to see why there's such a waiting list to get into Sloan-Kettering.
Most hospital staffs are still so badly educated about AIDS that they don't know much about it, except that they've heard it's infectious. (There still have been no cases in hospital staff or among the very doctors who have been treating AIDS victims for two years.) Hence, as I said earlier, AIDS patients are often treated like lepers.
For various reasons, I would not like to be a patient at the Veterans Administration Hospital on East 24th Street or at New York Hospital. (Incidents involving AIDS patients at these two hospitals have been reported in news stories in the Native.)
I believe it falls to this city's Department of Health, under Commissioner David Sencer, and the Health and Hospitals Corporation, under Commissioner Stanley Brezenoff, to educate this city, its citizens, and its hospital workers about all areas of a public health emergency. Well, they have done an appalling job of educating our citizens, our hospital workers, and even, in some instances, our doctors. Almost everything this city knows about AIDS has come to it, in one way or another, through Gay Men's Health Crisis. And that includes television programs, magazine articles, radio commercials, newsletters, health-recommendation brochures, open forums, and sending speakers everywhere, including - when asked - into hospitals. If three out of four AIDS cases were occurring in straights instead of in gay men, you can bet all hospitals and their staffs would know what was happening. And it would be this city's Health Department and Health and Hospitals Corporation that would be telling them.
· Let's talk about what gay tax dollars are buying for gay men.
Now we're arriving at the truly scandalous. For over a year and a half the National Institutes of Health has been “reviewing” which from among some $55 million worth of grant applications for AIDS research money it will eventually fund.
It's not even a question of NIH having to ask Congress for money. It's already there. Waiting. NIH has almost $8 million already appropriated that it has yet to release into usefulness.
There is no question that if this epidemic was happening to the straight, white, non-intravenous-drug-using middle class, it that money would have been put into use almost two years ago, when the first alarming signs of this epidemic were noticed by Dr. Alvin Friedman-Kien and Dr. Linda Laubenstein at New York University Hospital.
During the first two weeks of the Tylenol scare, the United States Government spent $10 million to find out what was happening.
Every hospital in New York that's involved in AIDS research has used up every bit of the money it could find for researching AIDS while waiting for NIH grants to come through. These hospitals have been working on AIDS for up to two years and are now desperate for replenishing funds. Important studies that began last year, such as Dr. Michael Lange's at St. Luke's-Roosevelt, are now going under for lack of money. Important leads that were and are developing cannot be pursued. (For instance, few hospitals can afford plasmapheresis machines, and few patients can afford this experimental treatment either, since few insurance policies will cover the $16,600 bill.) New York University Hospital, the largest treatment center for AIDS patients in the world, has had its grant application pending at NIH for a year and a half. Even if the application is successful, the earliest time that NYU could receive any money would be late summer.
The NIH would probably reply that it's foolish just to throw money away, that that hasn't worked before. And, NIH would say, if nobody knows what's happening, what's to study?
Any good administrator with half a brain could survey the entire AIDS mess and come up with twenty leads that merit further investigation. I could do so myself. In any research, in any investigation, you have to start somewhere. You can't just not start anywhere at all.
But then, AIDS is happening mostly to gay men, isn't it?
All of this is indeed ironic. For within AIDS, as most researchers have been trying to convey to the NIH, perhaps may reside the answer to the question of what it is that causes cancer itself. If straights had more brains, or were less bigoted against gays, they would see that, as with hepatitis B, gay men are again doing their suffering for them, revealing this disease to them. They can use us as guinea pigs to discover the cure for AIDS before it hits them, which most medical authorities are still convinced will be happening shortly in increasing numbers.
(As if it had not been malevolent enough, the NIH is now, for unspecified reasons, also turning away AIDS patients from its hospital in Bethesda, Maryland. The hospital, which had been treating anyone and everyone with AIDS free of charge, now will only take AIDS patients if they fit into their current investigating protocol. Whatever that is. The NIH publishes “papers," too.)
Gay men pay taxes just like everyone else. NIH money should be paying for our research just like everyone else's. We desperately need something from our government to save our lives, and we're not getting it.
· Let's talk about health insurance and welfare problems.
Many of the ways of treating AIDS are experimental, and many health insurance policies do not cover most of them. Blue Cross is particularly bad about accepting anything unusual.
Many serious victims of AIDS have been unable to qualify for welfare or disability or social security benefits. There are increasing numbers of men unable to work and unable to claim welfare because AIDS is not on the list of qualifying disability illnesses. (Immune deficiency is an acceptable determining factor for welfare among children, but not adults. Figure that one out.) There are also increasing numbers of men unable to pay their rent, men thrown out on the street with nowhere to live and no money to live with, and men who have been asked by roommates to leave because of their illnesses. And men with serious AIDS are being fired from certain jobs.
The horror stories in this area, of those suddenly found destitute, of those facing this illness with insufficient insurance, continue to mount. (One man who'd had no success on other therapies was forced to beg from his friends the $16,600 he needed to try, as a last resort, plasmapheresis.)
· Finally, let's talk about our mayor, Ed Koch.
Our mayor, Ed Koch, appears to have chosen, for whatever reason, not to allow himself to be perceived by the non-gay world as visibly helping us in this emergency. Repeated requests to meet with him have been denied us. Repeated attempts to have him make a very necessary public announcement about this crisis and public health emergency have been refused by his staff. I sometimes think he doesn't know what's going on. I sometimes think that, like some king who has been so long on his throne he's lost touch with his people, Koch is so protected and isolated by his staff that he is unaware of what fear and pain we're in. No human being could otherwise continue to be so useless to his suffering constituents. When I was allowed a few moments with him at a party for outgoing Cultural Affairs Commissioner (and Gay Men's Health Crisis Advisory Board member) Henry Geldzahler, I could tell from his responses that mayor Koch had not been well briefed on AIDS or what is happening in his city. When I started to fill him in, I was pulled away by an aide, who said, “Your time is up.”
I could see our mayor relatively blameless in his shameful.secreting of himself from our need of him in this time of epidemic - except for one fact. Our mayor thinks so little of us that he has assigned as his “liaison” to the gay community a man of such appalling insensitivity to our community and its needs that I am ashamed to say he is a homosexual. His name is Herb Rickman, and for a while our mayor saw fit to have Rickman serve as liaison to the Hasidic Jewish community, too. Hasidic Jews hate gays. Figure out a mayor who would do that to you.
To continue to allow Herb Rickman to represent us in City Hall will, in my view, only bring us closer to death.
When I denounced Rickman at a recent gay Community Council meeting, I received a resounding ovation. He is almost universally hated by virtually every gay organization in New York. Why, then, have we all allowed this man to shit on us so, to refuse our phone calls, to scream at us hysterically, to slam down telephones, to threaten us, to tease us with favors that are not delivered, to keep us waiting hours for an audience, to lie to us - in short, to humiliate us so? He would not do this to black or Jewish leaders. And they would not take it from him for one minute. Why, why, why do we allow him to do it to us? And he, a homosexual!
One can only surmise that our mayor wants us treated this way.
My last attempt at communication with Herb Rickman was on January 23rd , when, after several days of his not returning my phone calls, I wrote to him that the mayor continued to ignore our crisis at his peril. And I state here and now that if Mayor Ed Koch continues to remain invisible to us and to ignore us in this era of mounting death, I swear I shall do everything in my power to see that he never wins elective office again.
Rickman would tell you that the mayor is concerned, that he has established an “Inter-Departmental Task Force” - and, as a member of it, I will tell you that this Task Force is just lip service and a waste of everyone's time. It hasn't even met for two months. (Health Commissioner David Sencer had his gallstones out.)
On October 28th, 1982, Mayor Koch was implored to make a public announcement about our emergency. If he had done so then, and if he was only to do so now, the following would be put into action:
1. The community at large would be alerted (you would be amazed at how many people, including gay men, still don't know enough about the AIDS danger).
2. Hospital staffs and public assistance offices would also be alerted and their education commenced.
3. The country, President Reagan, and the National Institutes of Health, as well as Congress, would be alerted, and these constitute the most important ears of all.
If the mayor doesn't think it's important enough to talk up AIDS, none of these people is going to, either.
The Mayor of New York has an enormous amount of power - when he wants to use it. When he wants to help his people. With the failure yet again of our civil rights bill, I'd guess our mayor doesn't want to use his power to help us.
With his silence on AIDS, the Mayor of New York is helping to kill us.
* * *
I am sick of our electing officials who in no way represent us. I am sick of our stupidity in believing candidates who promise us everything for our support and promptly forget us and insult us after we have given them our votes. Koch is the prime example, but not the only one. Daniel Patrick Moynihan isn't looking very good at this moment, either. Moynihan was requested by gay leaders to publicly ask Margaret Heckler at her confirmation hearing for Secretary of Health and Human Services if she could be fair to gays in view of her voting record of definite anti-gay bias. (Among other horrors, she voted to retain the sodomy law in Washington, D.C., at Jerry Falwell's request.) Moynihan refused to ask this question, as he has refused to meet with us about AIDS, despite our repeated requests. Margaret Heckler will have important jurisdiction over the CDC, over the NIH, over the Public Health Service, over the Food and Drug Administration - indeed, over all areas of AIDS concerns. Thank you, Daniel Patrick Moynihan. I am sick of our not realizing we have enough votes to defeat these people, and I am sick of our not electing our own openly gay officials in the first place. Moynihan doesn't even have an openly gay person on his staff, and he represents the city with the largest gay population in America.
I am sick of closeted gay doctors who won't come out to help us fight to rectify any of what I'm writing about. Doctors - the very letters “M.D.” - have enormous clout, particularly when they fight in groups. Can you imagine what gay doctors could accomplish, banded together in a network, petitioning local and federal governments, straight colleagues, and the American Medical Association? I am sick of the passivity or nonparticipation or halfhearted protestation of all the gay medical associations (American Physicians for Human Rights, Bay Area Physicians for Human Rights, Gay Psychiatrists of New York, etc., etc.), and particularly our own New York Physicians for Human Rights, a group of 175 of our gay doctors who have, as a group, done nothing. You can count on one hand the number of our doctors who have really worked for us.
I am sick of the Advocate, one of this country's largest gay publications, which has yet to quite acknowledge that there's anything going on. That newspaper's recent AIDS issue was so innocuous you'd have thought all we were going through was little worse than a rage of the latest designer flu. And their own associate editor, Brent Harris, died from AIDS. Figure that one out.
With the exception of the New York Native and a few, very few, other gay publications, the gay press has been useless. If we can't get our own papers and magazines to tell us what's really happening to us, and this negligence is added to the negligent non-interest of the straight press (The New York Times took a leisurely year and a half between its major pieces, and the Village Voice took a year and a half to write anything at all), how are we going to get the word around that we're dying? Gay men in smaller towns and cities everywhere must be educated, too. Has the Times or the Advocate told you that twenty-nine cases have been reported from Paris?
I am sick of gay men who won't support gay charities. Go give your bucks to straight charities, fellows, while we die. Gay Men's Health Crisis is going crazy trying to accomplish everything it does - printing and distributing hundreds of thousands of educational items, taking care of several hundred AIDS victims (some of them straight) in and out of hospitals, arranging community forums and speakers all over this country, getting media attention, fighting bad hospital care, on and on and on, fighting for you and us in two thousand ways, and trying to sell 17,600 Circus tickets, too. Is the Red Cross doing this for you? Is the American Cancer Society? Your college alumni fund? The United Jewish Appeal? Catholic Charities? The United Way? The Lenox Hill Neighborhood Association, or any of the other fancy straight charities for which faggots put on black ties and dance at the Plaza? The National Gay Task Force - our only hope for national leadership, with its new and splendid leader, Virginia Apuzzo - which is spending more and more time fighting for the AIDS issue, is broke. Senior Action in a Gay Environment and Gay Men's Health Crisis are, within a few months, going to be without office space they can afford, and thus will be out on the street. The St. Mark's Clinic, held together by some of the few devoted gay doctors in this city who aren't interested in becoming rich, lives in constant terror of even higher rent and eviction. This community is desperate for the services these organizations are providing for it. And these organizations are all desperate for money, which is certainly not coming from straight people or President Reagan or Mayor Koch. (If every gay man within a 250-mile radius of Manhattan isn't in Madison Square Garden on the night of April 30th to help Gay Men's Health Crisis make enough money to get through the next horrible year of fighting against AIDS, I shall lose all hope that we have any future whatsoever.)
I am sick of closeted gays. It's 1983 already, guys, when are you going to come out? By 1984 you could be dead. Every gay man who is unable to come forward now and fight to save his own life is truly helping to kill the rest of us. There is only one thing that's going to save some of us, and this is numbers and pressure and our being perceived as united and a threat. As more and more of my friends die, I have less and less sympathy for men who are afraid their mommies will find out or afraid their bosses will find out or afraid their fellow doctors or professional associates will find out. Unless we can generate, visibly, numbers, masses, we are going to die.
I am sick of everyone in this community who tells me to stop creating a panic. How many of us have to die before you get scared off your ass and into action? Aren't 195 dead New Yorkers enough? Every straight person who is knowledgeable about the AIDS epidemic can't understand why gay men aren't marching on the White House. Over and over again I hear from them, “Why aren't you guys doing anything?” Every politician I have spoken to has said to me confidentially, “You guys aren't making enough noise. Bureaucracy only responds to pressure.”
I am sick of people who say "it's no worse than statistics for smokers and lung cancer" or "considering how many homosexuals there are in the United States, AIDS is really statistically affecting only a very few.” That would wash if there weren't 164 cases in twenty-eight days. That would wash if case numbers hadn't jumped from 41 to 1,112 in eighteen months. That would wash if cases in one city - New York - hadn't jumped to cases in fifteen countries and thirty-five states (up from thirty-four last week). That would wash if cases weren't coming in at more than four a day nationally and over two a day locally. That would wash if the mortality rate didn't start at 38 percent the first year of diagnosis and climb to a grotesque 86 percent after three years. Get your stupid heads out of the sand, you turkeys!
I am sick of guys who moan that giving up careless sex until this blows over is worse than death. How can they value life so little and cocks and asses so much? Come with me, guys, while I visit a few of our friends in Intensive Care at NYU. Notice the looks in their eyes, guys. They'd give up sex forever if you could promise them life.
I am sick of guys who think that all being gay means is sex in the first place. I am sick of guys who can only think with their cocks.
I am sick of "men" who say, "We've got to keep quiet or they will do such and such." They usually