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?

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 [1983], 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 means the straight majority, the “Moral” Majority, or similarly perceived representatives of them. Okay, you “men” – be my guests: You can march off now to the gas chambers; just get right in line.

We shall always have enemies. Nothing we can ever do will remove them. Southern newspapers and Jerry Falwell’s publications are already printing editorials proclaiming AIDS as God’s deserved punishment on homosexuals. So what? Nasty words make poor little sissy pansy wilt and die?

And I am very sick and saddened by every gay man who does not get behind this issue totally and with commitment – to fight for his life.

* * *

I don’t want to die. I can only assume you don’t want to die. Can we fight together?

For the past few weeks, about fifty community leaders and organization representatives have been meeting at Beth Simchat Torah, the gay synagogue, to prepare action. We call ourselves the AIDS Network. We come from all areas of health concern: doctors, social workers, psychologists, psychiatrists, nurses; we come from Gay Men’s Health Crisis, from the National Gay Health Education Foundation, from New York Physicians for Human Rights, the St. Mark’s Clinic, the Gay Men’s Health Project; we come from the gay synagogue, the Gay Men’s Chorus, from the Greater Gotham Business Council, SAGE, Lambda Legal Defense, Gay Fathers, the Christopher Street Festival Committee, Dignity, Integrity; we are lawyers, actors, dancers, architects, writers, citizens; we come from many component organizations of the Gay and Lesbian Community Council.

We have a leader. Indeed, for the first time our community appears to have a true leader. Her name is Virginia Apuzzo, she is head of the National Gay Task Force, and, as I have said, so far she has proved to be magnificent.

The AIDS Network has sent a letter to Mayor Koch. It “contains twelve points that are urged for his consideration and action.”

This letter to Mayor Koch also contains the following paragraph:

It must be stated at the outset that the gay community is growing increasingly aroused and concerned and angry. Should our avenues to the mayor of our city and the members of the Board of Estimate not be available, it is our feeling that the level of frustration is such that it will manifest itself in a manner heretofore not associated with this community and the gay population at large. It should be stated, too, at the outset, that as of February 25th, there were 526 cases of serious AIDS in New York’s metropolitan area and 195 deaths (and 1,112 cases nationally and 418 deaths) and it is the sad and sorry fact that most gay men in our city now have close friends and lovers who have either been stricken with or died from this disease. It is against this background that this letter is addressed. It is this issue that has, ironically, united our community in a way not heretofore thought possible.

Further, a number of AIDS Network members have been studying civil disobedience with one of the experts from Dr. Martin Luther King’s old team. We are learning how. Gay men are the strongest, toughest people I know. We are perhaps shortly to get an opportunity to show it.

I’m sick of hearing that Mayor Koch doesn’t respond to pressures and threats from the disenfranchised, that he walks away from confrontations. Maybe he does. But we have tried to make contact with him, we are dying, so what other choice but confrontation has he left us?

I hope we don’t have to conduct sit-ins or tie up traffic or get arrested. I hope our city and our country will start to do something to help start saving us. But it is time for us to be perceived for what we truly are: an angry community and a strong community, and therefore a threat. Such are the realities of politics. Nationally we are 24 million strong, which is more than there are Jews or blacks or Hispanics in this country.

I want to make a point about what happens if we don’t get angry about AIDS. There are the obvious losses, of course: Little of what I’ve written about here is likely to be rectified with the speed necessary to help the growing number of victims. But something worse will happen, and is already happening. Increasingly, we are being blamed for AIDS, for this epidemic; we are being called its perpetrators, through our blood, through our “promiscuity,” through just being the gay men so much of the rest of the world has learned to hate. We can point out until we are blue in the face that we are not the cause of AIDS but its victims, that AIDS has landed among us first, as it could have landed among them first. But other frightened populations are going to drown out these truths by playing on the worst bigoted fears of the straight world, and send the status of gays right back to the Dark Ages. Not all Jews are blamed for Meyer Lansky, Rabbis Bergman and Kahane, or for money-lending. All Chinese aren’t blamed for the recent Seattle slaughters. But all gays are blamed for John Gacy, the North American Man/Boy Love Association, and AIDS.

Enough. I am told this is one of the longest articles the Native has ever run. I hope I have not been guilty of saying ineffectively in five thousand words what I could have said in five: we must fight to live.

I am angry and frustrated almost beyond the bound my skin and bones and body and brain can encompass. My sleep is tormented by nightmares and visions of lost friends, and my days are flooded by the tears of funerals and memorial services and seeing my sick friends. How many of us must die before all of us living fight back?

I know that unless I fight with every ounce of my energy I will hate myself. I hope, I pray, I implore you to feel the same.

I am going to close by doing what Dr. Ron Grossman did at GMHC’s second Open Forum last November at Julia Richman High School. He listed the names of the patients he had lost to AIDS. Here is a list of twenty dead men I knew:

Nick Rock
Rick Wellikoff
Jack Nau
Donald Krintzman
Jerry Green
Michael Maletta
Paul Graham
Harry Blumenthal
Stephen Sperry
Brian O’Hara
Jeffrey Croland
David Jackson
Tony Rappa
Robert Christian
Ron Doud

And one more, who will be dead by the time these words appear in print.

If we don’t act immediately, then we face our approaching doom.

* * *

Volunteers Needed for Civil Disobedience

It is necessary that we have a pool of at least three thousand people who are prepared to participate in demonstrations of civil disobedience. Such demonstrations might include sit-ins or traffic tie-ups. All participants must be prepared to be arrested. I am asking every gay person and every gay organization to canvass all friends and members and make a count of the total number of people you can provide toward this pool of three thousand.

Let me know how many people you can be counted on providing. Just include the number of people; you don’t have to send actual names – you keep that list yourself. And include your own phone numbers. Start these lists now.


Remarks at the White House Conference on HIV and AIDS

by Bill Clinton
December 6, 1995
The Cash Room Treasury Building

1:10 P.M. EST

THE PRESIDENT: First of all, thank you, Sean, and thank you, Eileen. Thank you, Patsy Fleming and Secretary Shalala, Secretary Cisneros. Thank you, Dr. Scott Hitt, and all the members of the President’s Advisory Council. I think most of them were actually sitting in the overflow room so the rest of you can be here. But I thank them — we heard them; let’s give them a hand, maybe they can hear us. (Applause.)

I thank Dr. Varmus, Dr. Kessler, all the others here who are involved in dramatic effort that they are making in the fight against AIDS. Most of all, I thank all of you for coming and for giving us a chance to have this first-ever White House Conference on HIV and AIDS.

So much has been said by the speakers who have spoken before, and so much is still to be said by the panelists and perhaps by some of you in the audience, but I’m going to do what I can to shorten my remarks, because I want to spend most of my time listening to you and focusing on where we go from here. But there are a few things that I would like to say.

First of all, this is a disease, and we have never before had a disease we could not conquer. We can conquer this. (Applause.) I believe that — in my lifetime, we’ve eliminated small pox from the planet and polio from our hemisphere. We can do better, and we can do better until we prevail.

The threat of AIDS, just the very threat of it, has changed the lives of millions of people. And you heard from the talk about prevention, about which I want to say more in a moment, it needs to change the lives of millions of more Americans. It has taken too many friends and loved ones from every one of us in this room. For millions of people it has shaken their very faith in the future.

But it’s also inspired a remarkable community spirit. One of the people on this program today, Demetri Moshoyannis, who is right behind me, grew up in a typical American — I think he’s still there — (laughter) — grew up in a typical American suburb in a typical American community. He attended college, became politically active, with a quick mind and an active spirit. He was clearly a rising star. After graduating, he joined the Corporation for National Service to help us start AmeriCorps.

While he was working for AmeriCorps, he found out he was HIV positive at the ripe old age of 23. He took the news as a challenge, to use his communications skills, his organizational skills and his leadership skills to educate and support his peers and help them escape the threat. He represents the combination of heartbreak and hope that makes this epidemic so unique. I am grateful to him, grateful to Sean, grateful to Eileen, grateful to every one of you who also represents that remarkable combination. We have to be worthy of your continuing courage.

Twelve days ago, the Centers for Disease Control reported that our nation reached another sad milestone in the AIDS epidemic — a half million Americans have now been diagnosed with AIDS and more than 300,000 have died. On this very day, and on every day from this day forward until we do something to change it, 120 more Americans will lose their lives, another 160 people will be diagnosed with the disease, nearly 140 will become infected with HIV.

That’s why this meeting is important. It gives us an opportunity to say to America what the facts are, to rally our troops, to search our minds and hearts, to leave here with more weapons than we came to make progress in this battle.

Our common goal must ultimately be a cure, a cure for all those who are living with HIV, and a vaccine to protect all the rest of us from the virus. A cure and a vaccine, that must be our first and top priority. (Applause.)

When I ran for President, I said that I would do everything I could to pull together the necessary resources and to organize them, and to exercise real direction toward this goal. At a time of dramatic spending cuts, as Secretary Shalala said, we have nonetheless increased overall AIDS funding by about 40 percent. If my budget passes — and on this item, it actually might pass this year — we’ll have a 26 percent increase in research. For the first time since the beginning of the epidemic, there is now one person in charge of the nation’s entire NIH AIDS research program, Dr. William Paul. And though more budget cuts are coming, we have got to protect the research budget and the Office of AIDS Research. I will oppose any effort to undermine the research effort or the Office of AIDS Research. (Applause.)

I want all our fellow Americans to know that this investment in science has paid tremendous dividends. Today people with AIDS live twice as long as they did just 10 years ago, especially those who seek early treatment. AIDS-related conditions that used to mean a quick and often very painful death for people living with HIV can now be treated and even prevented.

Since this administration began, I also want to compliment Dr. Kessler and the FDA. In record time they are now approving new classes of AIDS drugs that will help to restore the damaged immune systems of people with HIV. Indeed, there was a study released last week which says that the United States is now approving drugs faster than any European nation. And a drug company executive was recently quoted as saying that we are now two years ahead of Europe in the approval of AIDS drugs. Thank you, bring on more. This is a good direction. (Applause.)

Again, we have a lot to look forward to. Combination drug therapies are showing great promise as a means for controlling the virus in the human body. And just last year we found that the use of drug therapy could actually block HIV transmission from mother to child. Our scientists tell me it’s within our grasp to virtually eliminate pediatric AIDS by the end of the decade by offering all pregnant women HIV counseling and testing and guaranteeing that they have access to the treatment they need to protect their unborn children. We can give a generation of Americans the freedom of being born without HIV. We can do it, and we will. (Applause.)

I think all of us know we have to do more. And you may have ideas for us. In the end — I want to emphasize this over and over again — whenever we have these conferences, it’s important for the President to speak, but it’s also important for the President and the administration to hear. And you don’t learn much when you’re talking. So I want to urge you all here during this meeting today and afterward in following up, we are combing the country and the world for the best ideas about what to do next.

To move the search for a cure forward and to accelerate the pace, I have asked the Vice President to convene a meeting of scientists and leaders of the pharmaceutical industry to identify all the ways in which we might accelerate the development of vaccines, therapeutics, and microbicides that can protect people from HIV and the infections it causes. There are no guarantees in science, of course, but the collective will of government and energy — industry — can overcome huge obstacles as we have seen just in the last few years.

Second, let me say I am very pleased that the decision that was made at the NIH to put Dr. Paul in charge of coordinating the AIDS research of the NIH, for the first to have it all reconciled, coordinated and directed, has worked out very well. But we need to extend this effort government-wide. That’s why I have asked Patsy Fleming to coordinate an inner-departmental working group that will be chaired by Dr. Paul to develop a coordinated plan for HIV and AIDS research all across every single department of our government, including developing a coordinated research budget. And I want a report in the next 90 days. That is the next important step — (applause).

We can’t afford any unnecessary delays or missed opportunities. And I’m convinced that these two steps will help us to avoid those.

In addition to the work in research, we have to continue to do what we can to assure that those who are living with HIV and AIDS get the support and the care they need. And I want to talk about this is some detail.

For people with AIDS, the current debate over how to balance the federal budget is far more than a question of political rhetoric. It is a matter of survival, primarily because of Medicaid. Even if we are successful, and I believe we will be, in reauthorizing the Ryan White CARE Act, at higher levels of funding — and as you heard the Secretary say, we’ve increased funding by, I believe, 108 percent in the last three years — that is less than 20 percent of the total money spent to care for people with HIV and AIDS.

Medicaid is the lifeline of support. It provides health care for nearly half of the 190,000 Americans living with AIDS provides health care for nearly half of the 190,000, including 90 percent of the children. It provides access to doctors, to hospitals, to drugs, to home care, the things that allow people to live their lives more fully. It pays for the drugs that keep HIV under control for longer and longer periods of time. And it pays for drugs that prevent the infections that often end the lives of those with AIDS. Medicaid pays for the care that allows families to stay together.

Yet today, Medicaid, a program that parenthetically also is eligible to cover one in five American children — that’s how many — 22 percent of our children are living in such difficult circumstances that they are eligible for Medicaid. And one of the things about the congressional budget that I objected to so strongly is that it slashes spending on Medicaid by over $160 billion and turns it into a block grant, thus eliminating a 30-year national commitment we have made to the poor, especially to poor children, which I might say has given us the lowest infant mortality rate in our history. It is the one thing we have done that has helped us to drive down infant mortality among poor people who otherwise never see doctors. It has given elderly people — millions of them — a dignified life in nursing home, or getting home care. And it has helped people with disabilities, not just people with HIV and AIDS, but millions and millions of families on limited incomes with children born with cerebral palsy, children born with spinibifida, families that could never afford to buy a decent wheelchair for their children, much less send them to camp in the summertime or have them in an appropriate living setting. And it is the lifeline for people with HIV and AIDS.

I say again, the Ryan White health Care Act is important. I’m proud of the fact that we have doubled the funding. I am fighting for more funding this year. I am proud of the fact that it enjoys some bipartisan support in the Congress. I am proud of the fact that when there was an attempt in the Senate to eviscerate it, and turn it into a political football, the Senate almost unanimously turned it back.

But be not deceived, we could double it. And if this Medicaid budget goes through, it is a stake in the heart of our efforts to guarantee dignity to the people with AIDS in this country. (Applause.) Thank you. (Applause.)

I want to say one other thing. I want to thank the Secretary of Housing and Urban Development for the work that he has done to increase opportunities in housing for people living with AIDS. (Applause.) We have taken some tremendous hits in the HUD budget, some of them we have inflicted in an attempt to get the deficit down. And there will doubtless be further reductions which will require reorganization on an unprecedented scale at the Department. But Henry Cisneros and I were together on the day before Thanksgiving at a shelter serving food, and he told me again the one thing that we must not do is to undermine the ability of the Department of Housing and Urban Development to try to provide dignified, adequate, compassionate housing opportunities for people living with AIDS.

So I say to you, when we talk about balancing the budget, I’d like to remind you that our administration has cut the deficit nearly in half in ways that were honorable and fair and enabled us to increase our investment in things that mattered, not just the war against AIDS, but education, technology, medical research, the environment, to bring the deficit down and lift the society up. And that’s the way we ought to approach this.

I want to say more about this in a minute, but this budget debate, because it requires tough choices, will inevitably require us to define what kind of people we really are. When times are easy and you can just dole out money to everybody that shows up at the door, it’s pretty hard to tell what your values are. When times are tough, and you have say yes some places and no others, it becomes far, far clearer.

So I ask you to help us in the fight against the Medicaid cuts, to help us to preserve Secretary Cisneros’s ability to support housing opportunities.

I got the message. I heard what you said about prevention. I would point out that in the last two years we have asked for increases in our prevention budget. But I am very worried about what’s happening there because of what has already been said.

We have to set a goal. And I hope you will suggest one coming out of this conference. We have to reduce the number of new infections each and every year until there are no more new infections. And we all have to do that. (Applause.)

We know that for this to work it has to be targeted and it has to be sustained, as the gay community demonstrated in the 1980s. We know now we have to pay particular attention to young people and those who abuse drugs. There is a lot of evidence that huge numbers of our young teenagers continue to be completely heedless of the risks of their behavior.

I was pleased to see the public service announcements that Secretary Shalala released to educate young people and to urge them to take responsibility to protect themselves. I would say we ought to go further, and you need to help us. We have to educate these kids, but we also have to tell them they cannot be heedless of the consequences of their behavior.

It is not enough to know — they must act. It is in the nature — it is one of the joys of childhood that children think they will live forever. It is one of the curses of childhood in some of our meanest neighborhoods that children think they won’t live to be much beyond 25 anyway. In a perverse way, both of those attitudes are contributing to the problem, because one group of our children think that they are at no risk because nothing can ever happen to them — they’re bulletproof; another group believes that no matter what they do, they don’t have much of a future anyway. And they are bound together in a death spiral when it comes to this. This is crazy. We have got to find some way to tell them you must stop this.

We are doing what we can to make those toughest neighborhoods safer. Believe it or not, amidst all the talk here in Washington, you could hardly know it, but out there in America in almost every community, the crime rate is down, the welfare rolls are down, the food stamp rolls are down, the poverty rolls have dropped for the first time in over a decade. Why? Because if you invest in people and their future and jobs are created and people go to work and hope begins to be infused in people’s lives, all of the problems we talk about here in Washington give way to opportunities in the lives of people.

But we see with this — with this problem, whether there is an atmosphere of opportunity or an atmosphere of hopelessness, too many teenagers are ignoring the responsibilities they have to protect themselves. We have to find better ways, and maybe more help from different people, to get inside their minds, to shake their spirits, to make them know care about them and we want them to have a future. But we cannot do the one thing that only they can do, which is to control their own decisions. And we have to do more. And if you’ve got any better ideas for me, believe me, I am all ears.

I want to say, too, just a little word about the importance of trying to tie our prevention efforts with HIV and AIDS to our prevention efforts with drugs and substance abuse, because that’s the second big problem area of populations. In 1993 and again in the crime bill in 1994, we increased our federal investment in drug treatment. And I’m working to try to convince Congress to do even more. We know that the right kind of treatment programs work. We know that the right kind of prevention programs work. And we know that we can marry the two.

I’ve asked the CDC to convene a meeting of state and local people involved in both public health and drug prevention to develop an action plan that integrates HIV prevention and substance abuse prevention. And I hope that we can do that and do it now, because I think it will make a significant difference.

I have to tell you that I am very worried that what we see with the HIV rates among juveniles is now being mirrored in drug use. Last year’s statistics showed unbelievably that drug use among people 18 to 34 was going down, but casual drug use among people 12 to 17 was going up. I think it is clearly because there are too many kids out there raising themselves, thinking nobody cares about them and not thinking there’s much of a future. So we have to deal with these two things together.

And while we search for a cure, work to improve treatment, strive to prevent new cases and to protect the hard-won gains of the past, I’d also like to say just a word about the basic human rights of people living with HIV and AIDS.

AIDS-related discrimination unfortunately remains a problem that offends America’s conscious. The Americans with Disabilities Act now offers more than 40 million Americans living with physical or mental disabilities, including those living with HIV and AIDS, protection against discrimination. And the Justice Department, the Department of Health and Human Services, the Equal Employment Opportunity Commission, they have been vigorously enforcing the ADA. We’re about to launch a new effort to ensure that health care facilities provide equal access to people with HIV and AIDS.

We simply cannot let our fears outweigh our common sense or our compassion. And as Sean said, we can’t let our bigotry — to use his word, we can’t let our homophobia blind us to our obligations. (Applause.)

I say that for two reasons. One is that the fastest growing group of people with the HIV virus are not gay men. This is not a disease that fits into the homophobic world view. But the second reason is that regardless of sexual orientation or race or income or even whether a person has sadly fallen victim to drug abuse — as someone who has lived in a family with an alcoholic and with a drug abuser — every person — I say this with clear knowledge, experience and conviction — every person with HIV or AIDS is somebody’s son or daughter, somebody’s brother or sister, somebody’s parent, somebody’s grandparent.

And when we forget this, when we forget that all the people who deal with this are our fellow Americans and that most of them share our values and our hopes and our dreams and deserve dignity and decency in the treatment we give them, we forget a very great thing that makes this a special country. And we forget it at our own peril.

In one way or another nearly every person in America at one time in his or her life has been subject to some sort of scorn. Woodrow Wilson once said that you could break a person with scornful words just as surely as with sticks, and beat him. And I think that’s an important thing, too, to remember.

The American people need to know that everybody in this country and, indeed, throughout the world, is now vulnerable to this disease. We need to identify what our responsibilities are in this country, and our responsibilities to developing countries, are to deal with the problem, to search for a cure, to search for a vaccine, to deal with the treatment issues. But I’m not sure it doesn’t begin with dealing with our own hearts and minds on this. That’s where you have to come in.

Frederick Douglas said, during the great struggle against slavery, that it was not light that is needed, but fire; not the gentle shower, but thunder; the feeling of the nation must be quickened, the conscious of the nation must be roused. That’s what you came here to do.

Don’t forget this — most Americans are good people. The great burden we have as Americans is that when we have to deal with something new, too often we can’t deal with it from imagination and empathy, we have to actually experience it first. I do not want to wait until every single family has somebody die before we have a good policy — (applause) –.

So I ask you — I understand anger and frustration, but I will never understand it until someday and something happens to me and I know the sand is running out of my hour glass. So I can’t totally understand it. But I ask all of you to remember this — this is fundamentally a good country. Alexis de Tocqueville said in the 1830s that this was a great country because we are a good country. And if we ever stop being a good country, we would no longer be a great country.

So I ask you to use this moment to give America a chance to be great about this issue, give our people a chance to feel this the way you feel it, to see it the way you see it, to know it the way you know it.

When I was getting ready for the conference yesterday, I called Bob Hattoy sitting back there in the room. I said, what do you think I ought to say tomorrow? What do you think is going to happen? We were talking. And he said, I think you ought to think about all the people who waged this battle with us in 1992 who aren’t around anymore. And so we just went through them name by name.

And then right before I came over here I looked at the picture of little Ricky Ray that I keep on my desk at the White House in the Oval Office. And I remembered his family and the members that are still struggling with it.

Give the country a chance to be great about this. Shake them up. Shake me up. Push us all hard. But do it in a way that remembers this is fundamentally a good country. Every now — when we stray, we get off the track a little bit, but we’re still around for more than 200 years because most of the time when the chips are down, we do the right thing. And I am convinced that people like you can get this country, starting here in Washington, to do the right thing.

Thank you, and God bless you all. (Applause.)

Q Mr. President, we will now begin the roundtable discussion with reports from each of the workshops. I’d like to begin with Dr. Renslow Sherer. He will report to you from the primary care and benefits workshop.

Dr. Sherer is a dedicated clinician and researcher who is head of the AIDS program at Chicago’s Cook County Hospital.

Q Mr. President, let me add my voice to thank you for being the first President in 14 years to convene such a conference. I have four messages for you from the primary health care group, and that’s for you and the Advisory Council and for the nation. And I’m really echoing many of the comments that you’ve just made.

Mr. President, we’ve made great progress in HIV care since the epidemic began. We have therapies now, as you mentioned, combination therapies that can improve the length of an individual’s life and the quality of their life. We’ve learned a great deal in the management of HIV and established systems of care, much of which is through the benefits of the Ryan White CARE Act. In future, we need to build on the experience and expertise of those caregivers around the country who have worked for so hard for so long.

But in order to do that, we’re concerned about the fact that our care system is seriously threatened by the potential for Medicaid cuts that are being debated right now. We urgently need you and the nation to support full funding for Medicaid and for the Ryan White CARE Act without mandatory testing requirements. Included in that need is the availability for all who need it for lifesaving drugs. Today, in several states — in New York state and Kansas — people who have had access to life-saving drugs may not now be able to receive them because of funds having expired through Title II of the CARE Act and through other means for the availability of those drugs.

Third, we need to improve access into our health care system for all who need it. In Chicago where I work, we think there are 34,0000 with HIV, but only 10,000 of those are identified, know they’re infected and are in care. We must improve our ability to reach out and provide HIV counseling and testing for those who need it, in a voluntary fashion so they can engage and come into care.

Some of the new improvements in HIV care in the last year require us to once again renew efforts to train health care providers — physicians, nurses and other health care providers — because there’s additional complexity now. And that training needs to take place in medical schools and nursing schools, and also through the AIDS education and training centers, for which funding has been threatened. Full funding of that will guarantee that we continue to be flexible and to respond to the increased training needs.

In addition, we need to ensure oversight of the quality of care. We’ve learned how to do HIV care well, but that’s not consistently transmitted throughout our health care system. On the contrary, there are still centers, individual physicians and providers, who know little or nothing about HIV care. We urgently need to engage them and train them, as well as to ensure that when we’re expanding access to care, it’s to providers with knowledge and experience, so people gain from the benefits that we’ve made in the last 10 years.

It’s very important that we pursue the most cost effective strategies that we can, but that’s not the same thing as limiting costs. We’re very concerned that our health care system allow for the optimal management of people with HIV. To quote one of our members, “to manage care only in terms of short-term cost considerations, it’s not only bad medicine, it’s inhumane and it’s unethical.” It is also not necessarily the most cost effective in the long run.

Finally, Mr. President, the definition of primary care really includes much of what you’ll hear following and what you’ve included in your remarks. In order to provide care at Cook County Hospital for someone with chemical dependency, we need to be able to address their chemical dependency with drug treatment in order to encourage their continuation in primary care. We need prevention urgently, both secondary and primary prevention.

We agree with you that discrimination is a serious impediment to the ability of people to receive care and needs vigorous leadership from the White House and from all the governor’s mansions of our country. Our patients need housing and need mental health care and drug treatment, and we have to think broadly. Those items will be covered by the remainder of the speakers.

In addition, primary care research in health outcomes and in clinical — new therapies is a critical component of HIV primary care.

Again, I thank you for convening this conference and for the leadership that you’ve already shown. Maybe it’s our most important message of all, to continue to listen to people with HIV, to affected communities, to their care providers and their loved ones, and to work with all of us to be here for the cure.

Thank you again. (Applause.)


I want to ask one brief question, if I might. One of the difficulties that we have in dealing responsibly with this issue involves the dilemma that you just laid out when you said we ought to have voluntary testing, not mandatory testing. And the issue is most clearly represented with the whole question of pregnant women now given the advances that have been shown. I’ve studied the CDC guidelines; I think they’re — they make sense to me. I think the rest of us who don’t know the facts ought to follow people that we hire to make these judgments. You know, if there’s — it makes a lot of sense to me. (Applause.)

But you just said that there were 34,000 people that needed your services, and only 10,000 were getting them and we had to find a way to get more people to get voluntarily tested. So how do we close the gap between 10,000 and 34,000? What can we do? What can you do? What can the rest of us do? That’s what’s driving this whole mandatory testing thing. It’s not the notion that people are out there hiding, trying to avoid getting testing; it’s that there’s this huge gap and that society is being burdened by it, and so are these people. So how do we close that gap?

Q I know other speakers today will address, this but let me start. Mandatory testing not only will not address this problem, it will further drive people away and be a disincentive to their coming into care. (Applause.)

THE PRESIDENT: So how do you do it?

Q Mr. President, let me pick the single example of pregnant women. At Cook County Hospital, we have a program with our Ob-Gyn physicians in community health centers to engage pregnant women and women at risk of HIV in voluntary HIV counseling and testing. We have an exceptional compliance, well over 90 percent, with those efforts. You could not improve, and should not improve — you can’t force or use coercion in this kind of a public health problem. The first principle of public health is to engage the support and cooperation of the people.

There are many other creative strategies to reach people at risk. I think that Eileen and Sean have spoken to them, and I know you’ll hear about more today.

MS. FLEMING: Mr. President, Phill Wilson was in the services workshop. He is the public policy director at AIDS Project Los Angeles, and an eloquent spokesperson on behalf of people living with HIV.

MR. WILSON: Good afternoon. As Patsy said, I’m a person living with AIDS. Tragically, I’m not alone. We are not alone. We are part of the American family. We’re not a special interest group. We are men and women; we’re old and young; we’re gay and straight. We live in urban, suburban, rural communities. We are Americans. And we want an end to this epidemic.

With the advances that have been made especially over the last year in basic science and some therapeutic research, we have the potential for hope. I believe you know something about hope. But that hope is at peril for a number of reasons. One of those reasons is the lack of leadership. We need you to continue and to step up your leadership. You and the Congress have made a commitment to balance the federal budget by a date certain. We need you to make a commitment to end this epidemic by a date certain. (Applause.)

The American people need to hear their President say, I’m committed to setting America on a course to end this epidemic in seven to 10 years. At the very time when there’s hope and promise for therapy, we are engaged in a dialogue to dismantle the very mechanisms that the majority of people living with HIV and AIDS use to access that care. Treatment without access is no treatment at all.

The health delivery system of America is crumbling before our very eyes. Medicaid must be protected. It must be protected as an entitlement program. We must maintain the standards of care, and we must support the drug assistance programs.

As was said earlier, we must resist efforts for mandatory testing. And I’ll answer your question: One of the ways to close the gap is by telling people that there’s something that they can do. That message hasn’t gotten out there. The second thing we need to do is to tell them that they have access to that treatment. If you’re poor in America, you don’t have access to that treatment. If you’re poor in America, you don’t know that there are things that you can do. Consequently, there’s no motivation for you to get tested.

Yes, in all of our agencies around the country we have waiting lists because we don’t have the proper resources to, in fact, test the people who want to be tested. We must invest in a comprehensive, coordinated continuum of targeted care that begins with access to voluntary anonymous testing for every American, and includes primary medical, home health, and hospice care.

You have established research and the Ryan White CARE Act as investment programs. We would urge to include in those programs housing and prevention. We are engaged in a war, and in a war you must make sure that all your fronts are covered.

As was mentioned earlier, we’ve recently sent American soldiers to Bosnia. I know we all pray every night that every man and woman there will come home. Every day I feel like I am in a war, a war that I will never come home from. I imagine there are people around you who say that what we ask for is politically impossible. James Baldwin admonished us in The Fire Next Time that in our time, as in every time, the impossible is the least that we can demand. I believe, Mr. President, if you lead, America will follow. (Applause.)

Q Mr. President, Virginia Apuzzo was the reporter in the housing workshop. She’s the former deputy executive director of the New York State Housing Department. She is a New York State Civil Service Commissioner, serves on the New York State AIDS Advisory Council, and was executive director of the National Gay Task Force at the beginning of the epidemic.

MS. APUZZO: Mr. President, we began from the premise that decent, safe and affordable housing is a basic right in America. We wish to underscore that housing is an HIV-AIDS issue.

We discovered early on that it was an AIDS and HIV issue when scores of people were put out of their homes and put out of their jobs because of discrimination vis-a-vis AIDS and HIV. So we didn’t initially get into the housing business, we responded to the demand.

Housing is the foundation upon which any program of care or services must build. Without stable housing the person with HIV-AIDS cannot access any of the programs or services that you support. People who are homeless are virtually red-lined out of programs for prevention and care. It is a fact that nearly 50 percent of the persons with HIV and AIDS will be homeless or at risk for becoming homeless at some time in their life in the course of their illness.

If that happens, that person will drop out of any system of health care for their illness. And the next time that person will be seen will be in an acute care facility. The stay in that hospital for that particular patient costs an average of over $1,000 a day. If that person’s health improves in the course of their hospital stay, the stay will probably be prolonged because the hospital has no place to release the person.

The cost of providing housing services in the HOPWA-funded residential facility is less than one-tenth, and some estimate as low as one-twentieth of the amount that I underscored for the hospital stay. HOPWA dollars reduce the use of emergency health care services by an estimated $40,000 per year. But HOPWA alone can’t do the job. We have relied in the past, and need to continue to rely in the future, on the flexibility afforded by — and Section 8 housing.

In the context of housing, we speak of a continuum of care, a range of housing and services that change over the course of the illness. It may be that a person at some time needs rental assistance, at another time needs transitional housing or group housing or skilled nursing care. That continuum of care has to be set up with the focus being the person and where the person is at that time of the illness in their life. We underscored that housing is a family issue. Houses support families. In some instances they help reconstitute families. And where there is no family, housing helps to create a sense of family.

We understand that you are preparing a seven-year budget plan. We need for you to consider how critical housing is in that scheme of things. And we need that to be reflected as a priority of yours.

And, finally, Mr. President, as has been said before, we’ve waited 14 years and watched 300,000 people die to have the opportunity that you’ve given us today to come before you. We would surely fail those who have passed on and those who are not here to speak for themselves if we didn’t reiterate, each of us, that this struggle needs and deserves your leadership — not for a meeting, not for a day, not for a year, but for the duration, Mr. President.

Thank you. (Applause.)

Q Mr. President, Deborah Cotton was in the research workshop. Dr. Cotton is associate professor of medicine at Harvard Medical School and a physician at Massachusetts General Hospital in Boston. She has been involved with most of the important research questions since the beginning of the epidemic.

DR. COTTON: Mr. President, on behalf of my colleagues in the biomedical workshop, I’m very pleased to be able to report real progress in the treatment of AIDS. As you said so eloquently in your opening remarks, patients are now living longer and living better lives.

Nonetheless, we all know that people are continuing to die every day and we must do more. We must do more because this is now the chief cause of death in people of their most productive years. Because, in fact, our therapies are cost effective and will reduce the burden of cost to our society in caring for those people. In addition, we know that the results that we have in AIDS are going to translate into other diseases. And, of course, because this is the right thing to do.

As you know, this is a virus which directly hits our immune system which is supposed to protect us from infection and tumors. We’ve had to learn a tremendous amount about how this virus works, and we’ve done that. This represents, really, an unprecedented achievement of American science, medicine and patient advocacy. And I think that it really is a model for moving forward with other diseases, in addition to AIDS.

We know now a lot about this virus, how it’s constructed, how it’s activated, where it hides. We know how it interacts with the immune system. And this has really enabled us to have a three-pronged approach against this disease. First, we’re developing drugs that actually try to eradicate or control the virus itself. And, because of an unprecedented cooperation between patient advocacy groups and the FDA, we now have or will soon have six approved anti-viral drugs.

One of these is in an entirely new class and one that flows right out of our basic science research. Several appear to be extremely powerful in being able to reduce the amount of virus in the blood and restore immune function. In addition, we have new evidence that these drugs used in combination will have much greater ability to provide a very durable effect.

Many of us here were at a meeting this week where data from an important clinical trial were presented, which for the first time demonstrates that treating people before they have symptoms can extend their life. This is a truly major result.

Several people, yourself included, have commented on the fact that we are now able to dramatically reduce the transmission of HIV from mother to baby. In addition to the widespread and wonderful results that this will bring to our population — and it has been said, it’s ability to potentially stop the pediatric epidemic — it also teaches us that antiviral drugs can prevent transmission. And we need to expand on that work to other populations.

Despite all of these advances in antiviral therapies, they certainly do not provide cure. In the meantime, we have new drugs which are just beginning to be shown to be effective in restoring immune function. This kind of research will be a value not only in AIDS, but also in cancer and many other immune deficiencies.

Perhaps most importantly to those of us who have been caring for patients for so many years, rather than sitting by and watching our patients die of devastating infections we can now effectively prevent some of the leading causes of morbidity and mortality in AIDS patients, the opportunistic infections that we all know so well. We’re also beginning to see progress in treating AIDS-related cancers. And this, again, is an example of research that will spill out and spill over to other types of cancer as well.

There is now tremendous momentum because of these advances and because of very important work that now shows us that the virus is very active from the beginning of the disease. This means that we have to start to think about treating much earlier. And as several other speakers have said, this means that we have to get the message to the American people that we need to have them come into therapy early, that there are things that we can do for them. We hope that we will eventually be able to treat the disease most effectively at its very earliest stages.

To preserve this kind of momentum we believe that there are several things that are needed. First, we would like to applaud your leadership in trying to preserve funding for basic biomedical science in the United States. We would also like to applaud your support, your very strong support of both the OAR and the FDA. We would like to see this kind of support continue. We would also like to see a strengthening in coordination of our system for doing clinical trials which would pull in not only the pharmaceutical industry and academic centers, but also community-based centers.

We need help in finding ways to make these important clinical trials both achievable by people of color, women and children, and also attractive to them as places where they can receive a state-of-the-art therapy in a respectful environment.

We need to successfully translate our research. And we’ve talked about that in several ways. I would like to mention the real need we have to preserve and protect academic medical centers as the home for this kind of biomedical research. These are places where we can bring together basic clinical scientists and clinicians and patients as well. And we must find ways to preserve them.

Finally, Mr. President, we would like to thank publicly all of the many people who have participated in clinical research in AIDS. They are the people who have made all of this progress possible. Sadly, many of them are no longer with us, but we remember them; we honor them; and we hope sincerely that their contribution will end up producing a cure for AIDS. (Applause.)

MS. FLEMING: Mr. President, Gregg Gonsalves will report from the Biomedical Prevention Workshop. Gregg found out he is HIV positive in March of this year. He is policy director of the Treatment Action Group and one of the most knowledgeable activists working to improve our nation’s research efforts.

MR. GONSALVES: I just wanted to give you some messages from our Biomedical Prevention group this morning. The economic consequences of HIV infection, the social barriers and the cost of behavioral or biomedical intervention against HIV, particularly in the developing world, make the development of an HIV vaccine and topical microbicides the world’s best hope for stopping the AIDS epidemic.

This is how we will save the greatest number of lives, and also in these fiscally conscious times how we will do it in the most cost-effective manner. The cost of treatment far outweighs the cost of prevention in the long run.

The second message we wanted to get to you is that an effective vaccine and the microbicide — we need to define terms here. We’re talking about female-controlled chemical or barrier methods of preventing HIV transmission are possible. We’ve made enormous advances in our basic knowledge of HIV and the immune system over the past several years. And we stand at the brink of an era of great possibility. But if we’re going to realize our goals we need to do several things.

First of all, we need to increase the public investment in research and development on vaccines and biomedical research, in particular. Right now, one out of 10 grants at the National Institutes of Health gets funded — one out of 10. That means there are nine wonderful awards that don’t get funded and research that does not get to be done.

Let me be very clear with you. The Congress’s plan to balance the budget in seven years using drastic cuts in discretionary domestic spending will entirely cripple our search for an effective vaccine and topical microbicides for AIDS. Don’t let these mad bookkeepers with simply numbers on their minds hold those infected with HIV — (applause) — please don’t let them hold people who are uninfected with HIV and those infected with the disease hostage. AIDS programs and biomedical research need to be priority investments over the next seven years.

The National Institutes of Health will be the engine that drives vaccine development from basic research all the way to the clinical evaluation of vaccine candidates. But the government can’t do it alone. Vaccine development depends upon the strong commitment from industry, and right now companies are heading out of the field. We need you to make vaccines and microbicides a national priority because they are not right now. A first step would be to ask the Vice President to call together vaccine manufacturers, scientists and governmental officials to figure out how to get them back into the game. And you’ve already announced that and we applaud that. It really needs to be the intervention of the Vice President on that level to make it happen.

What you could do is to reach out to your counterparts in Japan and France and all around the world and coordinate a global vaccine effort together, because it’s a global epidemic and if we don’t eradicate HIV everywhere, we’ll never eradicate it anywhere. (Applause.)

NIH has a very small budget when you compare it to the rest of the giant agencies of the federal government, and what it is going to give to the American public against AIDs, against cancer, against Alzheimer’s Disease is multifold, and the investment is worth it. And if you want to cure this epidemic, if you want to cure cancer, if you want to cure Alzheimer’s Disease, you could double the NIH budget next year. But it’s not going to happen.

MS. FLEMING: Thank you.

Mr. President, Demetri Moshoyannis was in the prevention workshop. You spoke about Demetri in your remarks.


MR. MOSHOYANNIS: Mr. President, we need, understand and appreciate your presidential leadership on the issue of HIV prevention. And as such, we ask that you, one, protect HIV prevention dollars in the federal budget by making it an investment priority, as the President’s Council on HIV-AIDS has recommended. We need you to make a clear statement and a commitment to continued funding for HIV prevention, research and implementation. Block-granting of prevention dollars to the states is unacceptable. (Applause.)

Number two, support current prevention efforts because we know prevention works. It is currently the best and most cost-effective way to halt the spread of the disease. However, it requires that we address some key issues, issues that you already stated — issues of human sexuality, special orientation including homophobia — thank you for using that word — gender, age, race and culture. We need to ensure that education is not only ongoing but honest and comprehensive. We need to be specific and sensitive to the needs of individuals and communities, especially women, communities of color, and rural communities.

Continued support for the community planning process is critical. Additionally, the needs of young people both inside and outside formal education systems are critical, especially in building self-esteem, communication and life skills — skills I wish I had.

Number three, provide greater financial support, application and translation of behavioral research findings to the general public. As an example, longitudinal studies of high-risk behaviors and circumstantial risks will give all life-saving insight.

Finally, number four, support greater coordination and financial support from different streams of public life, including the private sector and the federal government. We have seen the responsiveness to HIV prevention from foundations, a few corporations, community-based organizations. But we need to stress the more coordinated response.

Finally, we must have access to three things: plain and simple, information, number one. In simple, honest, and nonjudgmental and nonmoralistic language, young people, people of color, women and rural community members need continued HIV education and resources. We need to understand our individual and community rights and responsibilities.

Number two, risk and harm reduction. Condoms and other innovative barriers are not the answer, but they help in the fight. Condom availability programs and needle exchanges are intervention strategies that have proven to be effective. We must support them. (Applause.)

Finally, and not the least of which is very important, programs that utilize delayed intercourse strategies must be supported.

Another finding from our group is that we need to use mass media as a tool for education in the public eye. All sectors of the public arena, including federal government, should explore the use of mass media campaigns in HIV prevention. Other countries have done this. This strategy has proven to be effective in the anti-smoking agenda, for instance. We must use all that we know about social marketing strategies to bolster our current HIV prevention efforts.

This is only the tip of the iceberg, but, hopefully, it will open up some debate and conversation at the White House. (Applause.)

MS. FLEMING: Mr. President, Ed Morse will tell you about the substance abuse workshops. He’s a sociologist who does research in behavior medicine with an emphasis on substance abuse and HIV infected women. He’s associated with both the Tulane and the Louisiana State University Schools of Medicine.

MR. MORSE: Mr. President, the epidemics of substance abuse and HIV in this country are overlapping and highly inter-related. The issues of substance abuse research, prevention and treatment programs must be carried out and continue to move forward in an environment which instills cooperation, exchange of information and a loss of fear, hopefully in the future, of lack of funding. Every time we turned around, funding is always a threat. Neither the researchers, nor the program director, nor the director of program are going to be able to sustain successful programs that actually aim at substance abuse and HIV if it’s a continuous threat.

I would hope that as the country considers balancing a budget, as you yourself have said today, and others here, that there are people behind the numbers. There are people who need help. The substance abuse issue has to be addressed. The society has long ago passed it to the side, but we will move nowhere with HIV and AIDS if we do not address substance abuse in this country.

The programs of research, programmatic efforts intervention and treatment are in fact cost effective and they now are cost effective means of reducing the spread of HIV. So we actually get two bangs for the buck, if, sir, if we have the confidence, if we have the goal to move forward.

Abstinence programs have been very successful and for the most part of accepted in our society. Harm reduction programs are, to say the least, probably not well accepted. And yet it is there that more than likely we will be getting people off the streets by welcoming into centers, rather than pushing them out. They’ll be welcomed into treatment rather than setting such high hurdles that no one will be able to quality. (Applause.) Bleach programs, education, housing, detox efforts, all are at the nexus.

But there is no point in beating around the bush with you. I was asked to speak honestly. We must face the issue of a needle exchange program on a national level. (Applause.) I know that your council — the advisory council on HIV and AIDS — will come to address the policy ramifications of such a needle exchange policy. Those, I’m sure, will be more eloquently spelled out by them. I only ask you — and the group that worked with — ask you to listen to them carefully as you sit with them.

The major institutions in our society, be they insurance company or religious organizations, need to know that your calling to society is not just to the man in the street, but the man on Wall Street as well. They have a responsibility. (Applause.)

The face of substance abuse has no religion, it is of all religions. The face of substance abuse has no race, it is of all races. The face of substance abuse has no social class, it is of all social classes. There are those who have been marginalized in our society beyond belief — the African American, women, persons who live off on a far island called Puerto Rico, which actually considers itself a part of the United States, and rightfully so, yet pushed aside; the Hispanic population, which by the end of this century will be probably the largest Spanish speaking country in the world, they are marginalized; and our children. We need help with substance abuse. Only you can help us move.

Approximately — today, approximately one-third of all cases of AIDS are based in substance abuse, specifically, injectable drug users. One half of all new cases are clearly directly related to substance abuse. Substance abuse is a major key to the solution to this problem. We ask of you, and our group begs of you, to listen and provide the leadership to society to accept that substance, as HIV, is a disease that we need to do research on and we need to move forward with today. And we need to move forward with it today, and past tomorrow, and next year, and the year after, until it too, with AIDS, is gone.

Thank you. (Applause.)

Q Mr. President, Mike Isbell will report from the Discrimination Workshop. He’s Associate Executive Director of the Gay Men’s Health Crisis and the former Director of the AIDS project at Lambda Legal Defense and Education Fund.

Q Mr. President, the nation’s leading health experts say that we need to fight the stigma associated with HIV because it impedes our public health efforts to bring the epidemic under control. You asked earlier why so few people have been voluntarily tested for HIV. In a climate of fear and discrimination and stigma, many people simply don’t want to learn their HIV status because they believe that nothing good is going to come of them on the other side.

Similarly, people who are infected won’t seek appropriate health care if they believe that they’ll be the victims of discrimination. We’ve made important progress since the beginning of the epidemic in fighting discrimination. We now have a federal law which you referred to, the Americans With Disabilities Act, which broadly protects against HIV-related discrimination in employment, housing and public accommodations.

But what we’ve often lacked in the epidemic, as other speakers have alluded to, particularly in the epidemic’s first decade, is the solidarity of our political leaders with people with AIDS. And it’s here where we need your help the most.

Your comments and this entire conference have been inspiring. And we are delighted to hear your inspiring words. But I would urge you to also raise awareness among corporate CEOs, among our religious leaders and among our religious leaders, and among our civic leaders throughout the country because they, too, need to hear the message that you delivered to us earlier today.

Mr. President, when a family experiences a crisis, family members pull together and seek strength and support from one another. Mr. President, there is a crisis in the American family, and that crisis is called AIDS. We need you to tell the truth about AIDS, that one out of 93 American men are infected with HIV and will, barring a significant medical development, die at an early age. For African American men, the rate is one in 33. AIDS is the leading killer of American men and women between the ages of 25 and 44.

Mr. President, the worst form of HIV discrimination is inequitable access to health care, and I would simply bring my voice and add those to the others to say that we strongly urge you to ensure the continuation of the Medicaid program and ensure that every Medicaid recipient has a private right of action to fight discriminatory health care treatment.

We are extremely aware, Mr. President, that many members of Congress wish to further stigmatize people with HIV for short-term political gain, and we urge your leadership in opposing these efforts. In particular, the Defense Authorization Bill would terminate qualified HIV positive service personnel. We need you to say no to this provision that treats people with HIV differently than any other group.

The House of Representatives would like to require that pregnant women and their newborns be tested for HIV without their informed consent. Even though we know that voluntary programs work, we urge you to oppose this measure.

Today, members of the House of Representatives are holding hearings because they apparently would rather see young people die than learn the truth about this disease. (Applause.) And we implore you, Mr. President, to oppose those who would base our public policies on fear and ignorance.

And, finally, the congressional welfare bill would withhold basic medical services to people solely on the basis of their immigration status, and we urge you to oppose that provision as well. (Applause.)

Mr. President, your AIDS Advisory Council will be giving you further recommendations in the area of discrimination, and I would request that you and your staff carefully study them.

And finally, let me say again, thank you for convening this historic meeting, and hopefully it’s the first of many to come. Thank you. (Applause.)

MS. FLEMING: Mr. President, Martina Clark is the reporter from the International Workshop. Martina Clark is with the International Community of Women Living With HIV and AIDS and the California-based World Organization, and has been a warrior in the international fight against AIDS, especially as a member of the governing board of the new U.N. program known as U.N. AIDS.

MS. CLARK: Thank you. Mr. President, we live in a global community. Most people in this country are descended from somewhere else. The faces of AIDS, both in this country and abroad, clearly reflect this diversity. We at this table who are HIV positive are but a handful of the 18 million people worldwide who are living with HIV.

As has already been mentioned, the recent difficult decision to send 20,000 Americans into Bosnia to help our global community will remain on the minds of everyone in this country until, God willing, they return safely by Christmas of 1996. And, yet, in the fight against AIDS, we’re losing the war.

Using conservative estimates from the World Health Organization, 20,000 people will become newly infected with HIV before the Redskins suit up for the football game on Sunday afternoon. Twenty thousand individuals will die of AIDS by the end of next week. Increasingly, the group most affected by this epidemic is women, both married women and single women. Every minute of every day, two women become infected with HIV. Every two minutes of every day, a woman dies of AIDS.

In many areas, more than 60 percent of all new infections are occurring in young women between the ages of 15 and 24 years old. Worldwide, this epidemic is overwhelmingly spread through heterosexual contact, and still, men and women of all sexual orientations from all cultures continue to become infected.

The epidemic affects individuals in their most productive years. It is a family issue. Who will give birth to the children? Who will care for the orphans? Who will raise the food so that countries can eat, survive and not become dependent on the United States in future years?

The United States has already taken a clear lead in this global epidemic, and this must continue. We cannot isolate the United States, as HIV has already successfully penetrated every border of every nation. Our current immigration policy will do absolutely nothing to decrease the spread of AIDS. It only increases the stigma, fear, denial and discrimination already so rampant in this pandemic. (Applause.)

We must secure the continued funding of our international development programs, such as USAID, so that we can ensure that our future generations have economic, social and political stability in the planet. We must share our advances with other nations so that all people, not just the privileged few living in the northern hemisphere, can live longer, more productive lives. The U.S. must continue its support of the new United Nations program on AIDS. And I would encourage you to take advantage of expertise and meet personally with Dr. Peter Piaf (phonetic) — the program director, to be more fully briefed on the epidemic.

The U.S. must continue to follow through on documents already signed, such as the Paris Summit, which highlight the inclusion of people living with HIV and AIDS at all policy and decision-making levels, and research on female-controlled methods of prevention, to name but a few.

In closing, Mr. President, and perhaps most importantly, the world looks to you for leadership. We must continue to bridge our work with our international partners, because the experiences shares from abroad and the research conducted with other countries will be our greatest tools in applying lessons learned to help my brothers and sisters living with HIV in this great country.

And finally, if I may, I would like to invite all of the HIV-positive people in this room who so wish to stand up and show the true diversity and reality of this epidemic. (Applause.)

MS. FLEMING: Mr. President, would you like to make a comment or ask a question of any member of the panel?

THE PRESIDENT: I think maybe we should open the floor to the audience and see if anyone else has anything they’d like to say. (Applause.) I hear talking of those behind me that I can’t see.

Q Mr. President, I want to thank you today for holding the conference. And I especially appreciate that many of us were able to meet with Cabinet secretaries or high-level administration officials. The group that I was I with, we met with Secretary Cisneros. Secretary Cisneros has a model program that I think that should be replicated throughout your administration. He meets bimonthly with AIDS housing activists and providers to find out what’s going on in the AIDS housing community. And that’s led to the creation of an AIDS housing office at HUD.

That kind of connection with this epidemic in each department can make a real difference with this disease. And I urge you to work with all your Cabinet secretaries to make that happen. (Applause.)

Q My name is Jeff Reynolds. I’m director of policy at Long Island Association of AIDS Care. Long Island leads the nation in — AIDS cases, and we’ve been yelling and screaming for years that the white picket fences don’t protect you from AIDS.

I’m wondering if you would consider adding your voice to that message and doing a prime-time address on AIDS. There is a lot of media here today, and many people — (inaudible) — on prime time, we need the heart of America to hear your voice and to let them know that AIDS is a reality. Will you do that? (Applause.)

Q Mr. President, my name is Jeffrey Morris and I am chairman of the HIV-AIDS — Organization, in Miami, Florida. In Miami, I, unfortunately, regrettably, have to announce that 17 percent of our population are over the age of 50. And with all due respect, Secretary Shalala, we do need something for this particular segment of our population because they are, indeed, very, very — in isolation.

Q Mr. President, the National Task Force on AIDS — came up with a series of recommendations, from regulating — to ensure that women of child-bearing age who are HIV positive would have access to — cases of clinical trials and that, in fact, the side effects — (inaudible.) I would please urge you, Mr. President, to ensure that these regulations are actually promulgated —

Q Mr. President, I’m a person living with AIDS and like many people, I have named my remaining — after my friends. And I’ve listened intensely today to the conference and the comments today. And it seems to me that we are sugar-coating a little bit of the problem, at least a problem to someone who is living with the disease.

Thank you, Doctor Koffman and Dr. Kessler for all that you do, but there is today on the horizon — on the horizon — the most impressive group, class of drugs to fight HIV. And the most promising of those have, of course, not yet received approval and are available. And in people’s lives, like myself, two months, three months, four months, are critical to sustaining life. And I would just like to ask you and those people who work with you to do whatever you can to see that those drugs receive the top priority of approval and we can get them out as quickly as possible.

Thank you. (Applause.)

Q Thank you. I’d like to reemphasize — HIV as an development issue. Despite your administration’s involvement and commitment to the HIV issue, I’d like to emphasize that you, as the leader in international AIDS awareness and prevention — international — $120 million. — programs under very serious threat from Congress. We really need your support. Our development programs overall and HIV — for anything at all at the international level.

MS. FLEMING: Thank you, Mr. President. (Applause.)

THE PRESIDENT: I would like to say just one thing before I go.

First of all, I have learned a lot. I even learned some things about some bills in Congress I thought I already knew all about. (Laughter.) And I would like to encourage you to make sure that through our AIDS Office or through the Advisory Council and Scott Hitt that we have an actual record of every question asked and every issue raised. I think it’s very, very important that we do a systematic follow-up on every issue raised, every question asked.

Q Mr. President, why didn’t you do a systematic follow-up on the two previous conferences on AIDS? You promised in your campaign to adopt the recommendations. Why has it taken another year for you to —

THE PRESIDENT: Didn’t you listen to what we said before about what we’ve done the last two years? (Applause.) Most of the —

Q I heard you talk about —

THE PRESIDENT: Do you want me to answer, or do you want to keep talking?

Q — I did not hear you talk about specific actions that will save lives today. And there’s a list of 50 that have been followed by a range of — that have been submitted to officials in your administration. And it has taken two years, and now —

THE PRESIDENT: First of all, that’s not accurate. We recommended a lot of those recommendations, as you know. So I think that’s a little unseemly for you to say. We had a set of recommendations we got when we got here, most of which have been implemented. I am very sorry — I am very sorry — now, wait a minute. I listened to you, now you listen to me. I listened to you. (Applause.)

I am very sorry that there is not a cure. I am very sorry that there is not a vaccine. I regret that not everything I have asked for has been approved by the Congress. In the context of what is happened in this country in the last three years, I believe we have gone a long way toward doing what we said we would do. But I will never be satisfied — and you won’t, and you shouldn’t be — until we have solved the problem. That is what this meeting is about and that’s what I am trying to do. And I think all of us should do what we can to be constructive.

Q — (inaudible) —

THE PRESIDENT: Well, that’s a matter of dispute. You have your version of the facts and I have mine, and I’ll leave it to others to make a judgment.

Q — (inaudible) —

THE PRESIDENT: Let me just say, I believe this has been a good meeting. I think most people are glad they came and I think most people believe they’re better off than they were four years ago. (Applause.)

END 2:37 P.M. EST

Remarks at the Commonwealth People’s Forum

by Stephen Lewis, Co-Director of AIDS-Free World
Tuesday, November 24, 2009
Port of Spain, Trinidad and Tobago

This is a moment of truth for the Commonwealth. The anti-homosexuality Private Member’s Bill
introduced into the parliament of Uganda, and now proceeding through the normal legislative
process, puts the Commonwealth’s legitimacy and integrity to the test.

In a fashion unmistakable in both clarity and intent, the putative legislation declares war on
homosexuality. There are deeply offensive sodomy laws and homophobic statutes on the books
of many other Commonwealth countries, particularly here in the Caribbean. But nothing is as
stark, punitive and redolent of hate as the Bill in Uganda; nothing comes close to such an
omnibus violation of the human rights of sexual minorities. For some time now, Uganda has had
offensive anti-homosexual legislation on the books, but this variant, this inflammatory redesign
makes of the law a veritable charter of malice.

What is truly staggering about all of this is that not a peep of skepticism or incredulity has come
from President Museveni. And President Museveni is chairing the Commonwealth Heads of
Government summit. In so doing, he makes a mockery of Commonwealth principles.

One must remember that the last meeting of CHOGM was held in Uganda in 2007, and issued
what is called the “Munyonyo Statement of Respect and Understanding”. It asserted that the
Commonwealth “is a body well-placed to affirm the fundamental truth that diversity is one of
humanity’s greatest strengths”. It went on to say that “accepting diversity, respecting the dignity
of all human beings, and understanding the richness of our multiple identities have always been
fundamental to the Commonwealth’s principles and approach …”. President Museveni signed
the document. How in the world does he reconcile the affirmation then with the defamation now?

It is noteworthy that much of the strongest opposition to the Bill is coming from the courageous
Lesbian, Gay, Bisexual, and Transgender activists on the ground. LGBT activism always
commands admiration, but in this instance especially so, because their very lives hang in the

The proposed legislation actually mandates the death penalty for any HIV positive gay man who
has sex with another man or any HIV-positive lesbian who has sex with another woman. But
because it’s often hard to believe the sheer malignancy of language, let me quote directly from
the Bill itself. Section 2 of the Bill is titled, “The offence of homosexuality”.

It reads as follows:
Clause “(1) A person commits the offence of homosexuality if — (a) he penetrates the anus or
mouth of another person of the same sex with his penis or any other sexual contraption; (b) he or
she uses any object or sexual contraption to penetrate or stimulate the sexual organ of a person of the same sex; (c) he or she touches another person with the intention of committing the act of

Clause “(2) A person who commits an offence under this section shall be liable on conviction to
imprisonment for life”.

Where does the death penalty enter this twisted world of sexual paranoia? Let me quote the
applicable section and sub-section. Section 3 of the Bill is titled, “Aggravated homosexuality”.
It reads in part: “A person commits the offence of aggravated homosexuality where the …
offender is a person living with HIV”. “A person who commits the offence of aggravated
homosexuality shall be liable on conviction to suffer death”. And just in case there’s any
conjecture, we have this finale: “Where a person is charged with the offence under this section,
that person shall undergo a medical examination to ascertain his or her HIV status”.

From whence do such sentiments arise? What dark corner of the soul is at work? The entire bill
confounds rationality.

In fact, the legislation has a powerfully Orwellian flavor. Section 14 has the title “Failure to
disclose the offence”. It requires everyone in the entire society to report on any evidence of
homosexuality and to do so within twenty-four hours. If it weren’t so extreme, so menacing, so
lunatic, it would be the stuff of theatrical parody. Parents, teachers, doctors, entrepreneurs,
preachers, landlords, community health workers, members of the media, civil society activists,
anyone who can identify a homosexual, gay or lesbian, or has reason to believe that
homosexuality is lurking, must report to the authorities or face a fine, or jail term of three to ten
years, or both. Can you imagine a father or a mother turning in a son or daughter? Can you
imagine a teacher ratting on a student? Can you imagine a physician who’s taken a Hippocratic
oath to tend to the sick betraying that trust because of a patient’s sexual orientation? But that’s
exactly what this law requires.

I’ve truly never seen its like before. Please forgive the harsh language, but this intended antihomosexual
statute has the taste of fascism.

And yet, that’s only the half of it. What is put at terrible risk here — beyond the threat of the
death penalty for HIV-positive homosexuals — is the entire apparatus of AIDS treatment,
prevention and care.

It’s profoundly ironic that the country that’s seen as emblematic of success in fighting the
pandemic is now contemplating such a decisive step backwards. The effect of this legislation
will inevitably be to demonize homosexuality even further, to intensify stigma, to drive gay men
and women underground, to terrify them in their everyday lives, to diminish dramatically the
prospect of counseling and testing to establish HIV status, to make it virtually impossible to
reach homosexuals with the knowledge and education and condoms that prevent the spread of

It’s equally ironic that this retreat into the dark ages of the virus comes at precisely the moment
when the world understands the overwhelming importance of dealing with high risk groups, be
they sex workers, or injecting drug users or men who have sex with men. Indeed, in Uganda
itself, as recently as last year, the Uganda AIDS Commission, in conjunction with UNAIDS,
called for a review of legal obstacles to the inclusion of most-at-risk populations, including
MSM, in the response to the pandemic. That review built logically on the introduction, by the Ministry of Health in 2008, of the “Most At Risk Populations’ Initiative” (MARPI) formulated to target specific groups, including homosexuals.

The new legislation thus eviscerates existing public policy. Is no one in the political apparatus of
Uganda alert to the destructiveness of it all? I am reminded of the remarkably sensible words of
Michael Kirby, former justice of the High Court of Australia: “… the fact remains that the
current approaches, particularly in Commonwealth countries in Africa, Asia and the Caribbean,
place an impediment in the way of tackling this major epidemic. Criminalize people and you
cannot reach out to their minds and effectively influence their conduct … that message is now
one of great importance for the Commonwealth of Nations where AIDS is definitely a priority

Indeed, there’s a very real crisis of conscience in the offing. Both the Presidential HIV/AIDS
Initiative in the United States — PEPFAR as it’s known — and the Global Fund to Fight AIDS,
Tuberculosis and Malaria, have invested huge sums in Uganda to subdue the pandemic. Last year
from PEPFAR alone, the amount was $283 million, and the Global Fund has a five-year
commitment of another $250 million. But both those organizations premise their support in part
on dealing with high-risk groups. What are they to do? This is no trifling matter. Members of
Congress have already written to the Secretary of State raising the dilemma of having PEPFAR’s
work on the ground in Uganda so dramatically compromised. More, under the recent revisions to
PEPFAR, the United States must now negotiate “Partnership Framework Agreements” with
recipient countries, and part of the agreement hinges on addressing target groups, including men
who have sex with men. How in the world is that to be negotiated in the face of the antihomosexuality

Moreover, under President Obama, American policy is clearly shifting. This is a very good thing.
Under the previous administration, the United States, through PEPFAR, forced countries like
Uganda into compliance with awful policies involving, for example, sex workers and
abstinence…; the United States used money, and withheld money, to serve a right-wing agenda.
In a sense, Obama is now involved in an act of redemption.

Just last March, the US administration declared its support for a UN declaration on sexual
orientation and gender identity. The declaration is strong: it calls on all countries to
decriminalize consensual homosexual conduct, and it condemns violence, discrimination,
exclusion and stigmatization based on sexual orientation and gender identity. It also condemns
killings and executions, arbitrary arrest and deprivation of economic, social and cultural rights on
those same grounds. The declaration is seen as a great victory for LGBT human rights. It has the
support of 67 member states. I note, with consternation, that Mauritius is the only African
Commonwealth country to have signed, and I note, with profound dismay, that not a single
Commonwealth country in the Caribbean has signaled support.

President Obama, on the other hand, is firmly on record for the protection of gay and lesbian
rights, and Hilary Clinton has said “…human rights is and always will be one of the pillars of our
foreign policy. In particular, persecution and discrimination against gays and lesbians is
something we take very seriously”. Dr. Eric Goosby, who heads PEPFAR, is even more firmly
on the record: “I look forward to working with field and headquarters staff, Congress and others
in the Administration to ensure that PEPFAR effectively targets the most-at-risk and vulnerable
populations — including LGBT populations — with culturally appropriate prevention, care and
treatment interventions”.

The Government of Uganda and PEPFAR are on a collision course. President Museveni had best
wake up and smell the dollars.

I would never wish to counsel financial penalties, but it’s a real conundrum. Worse, the
employees of the non-governmental community-based organizations that receive the money
would be subject to risk of imprisonment if they continued to work with homosexuals. I was
struck by a letter written to the American Ambassador in Uganda, from a group of Foundations
that do HIV/AIDS programming in the country, asking him to “take appropriately stern action to
oppose the bill …” They were agitated and vehement in their condemnation of the Bill, noting
that it put their local and international employees and consultants at risk of criminal charges.
They felt, in fact, that the Bill has already applied a chill to human rights and civil liberties in
Uganda and is an unrelievedly nasty piece of work. They observed, somewhat sardonically, that
the Ambassador has diplomatic immunity, but their collective staff in the projects they funded
have no such protection.

And the complications abound.

The new Executive Director of UNAIDS (and ironically, a former UNICEF Representative in
Uganda who knows Museveni well) has staked a good part of his growing reputation on
deploring homophobic legislation, valiantly fighting for the human rights of the gay community
and speaking unequivocally about his revulsion at punitive anti-homosexual behavior. As a
matter of fact, Michel Sidibe is on record in a way that speaks directly to the import of the
Ugandan Bill. He is reliably reported to have said (and it certainly rings true): “It pains me that
80 countries have laws which criminalize same-sex sex, and it outrages me that seven countries
can invoke the death sentence for homosexual practice”.

Well, now it verges on eight countries, and the death sentence is directly linked with HIV positive
gay men. So what, I ask, does Michel Sidibe do now? Does he communicate that
outrage directly and publically to President Museveni? Does he enlist the intervention of the UN
Secretary-General? Does he write to the Secretary-General of the Commonwealth and ask that
Uganda be suspended in the event that the legislation passes in its present form? What counsel
does he give to the Global Fund and PEPFAR? These are not idle questions: the Executive
Director of UNAIDS is an influential figure who cannot allow his outrage to be but sound and
fury ending in capitulation.

Furthermore, what’s going on with the legislation is not simply confined to the egregious
sections that I’ve quoted. There are several additional odious sections; the erosion of human
rights has few limits. One other clause of the Bill purports to extend the arm of the state into the
bedrooms of the world. Using what is called “extraterritoriality”, the legislation decrees that any
Ugandan engaging in homosexual acts outside of Uganda is equally culpable, and will be
arrested and charged accordingly. Thus, homosexuality joins terrorism and treason in the
pantheon of extraterritorial jurisdiction to be exercised by Uganda. How this would be enforced
is not immediately apparent, and of course the clause is ridiculous, but the ridiculous has a habit
of becoming national jurisprudence if it’s driven by hatred.

The evidence of just how foolhardy and crazed the legislation is, lies in its most extreme feature:
the Bill asserts that where any of its provisions is in conflict with any international human rights
instrument that Uganda has ratified, the content of the Bill will prevail over international law.

This is palpable nonsense, and simply not possible. But it is a fascinating glimpse into the
twisted cerebral calculus that fashioned the legislation.

Naturally, the protagonists of the legislation are mounting arguments in its defense. The
arguments are unsustainable.

We are reminded that this is a Private Member’s Bill, and the Government is simply following
legislative practice in allowing it to be debated. That’s just a clever ruse. I sat in a
Commonwealth parliament for more than fifteen years, and where a Private Member’s Bill
threatens to dominate public debate and the parliamentary session, the government always makes
clear where it stands. In this instance, the defenders point out that President Museveni has not yet
spoken. He has found time, since the Bill was tabled on October 14th last, to make some
disparaging remarks about homosexuals at a recent youth event in Kampala, but it’s true that he
hasn’t yet definitively pronounced on the Bill itself. But ominously, one of his senior cabinet
ministers has: Mr. James Nsaba Buturo, Minister of Ethics and Integrity heralded the legislation
with apparent enthusiasm. InterPress News quotes him as saying “It is with joy we see that
everyone is interested in what Uganda is doing, and it is an opportunity for Uganda to provide
leadership where it matters most. So we are here to see a piece of legislation that will not only
define what the country stands for, but actually provide leadership around the world.”

He could better be called the Minister of Fear and Loathing.

I know that the views I am expressing on behalf of the organization I represent, AIDS-Free
World, will seem tough and harsh to some. But let me tell you what we feel.

We don’t think that this piece of legislation deserves a careful parsing of its clauses, invoking all
of the international human rights instruments that Uganda has endorsed, from the Universal
Declaration of Human Rights to the Covenant on Civil and Political Rights, attempting to show
where the Bill is in conflict with human rights principles. That just gives far too much credibility
to the proposed legislation. On its face, without more than a simple glance at the substance, the
Bill is revealed as an unbridled attack on the human rights of sexual minorities. There is no
overall clause worthy of retention. There are phrases here or there (like the prohibition of sex
with a minor) that any sentient human being can agree with. But the Bill cannot possibly be
salvaged. It must be expunged in total from the parliamentary record. And for those who believe
in conspiracy theories, let me say that the fundamentalist hand of the religious right in the United
States is not difficult to discern.

Nor do we think that we need treat this issue with respect. We don’t believe that we have to
‘respectfully submit’ our arguments to anyone, or seek to ‘respectfully influence’ the powersthat-
be. There are some moments in life where defining issues are indelibly joined. I remember
sitting behind my then Canadian Prime Minister, Brian Mulroney, at the Commonwealth meeting
in Vancouver in 1987. The issue was apartheid. The contest was between Margaret Thatcher and
Mulroney, and Mulroney let her have it. There was no respectful pretense. He didn’t parse the
pass laws, he didn’t invoke the clauses of international covenants, he just lacerated Prime
Minister Thatcher for defending apartheid, and he decried it for what it was: a totalitarian regime
rooted in racism and the savage decimation of human rights. It’s worth noting that he was joined
by Sir Shridath Ramphal, then the Secretary-General of the Commonwealth, who was slightly
more restrained but unmistakable of tone and purpose. That was a time when the Commonwealth
stood for something.

The analogy with apartheid is not a stretch. In 1998, the Constitutional Court of South Africa
ruled on a case involving the National Coalition for Gay and Lesbian Equality. The court held
that “the constitutional protection of dignity requires us to acknowledge the value and worth of
all individuals as members of our society.” The court then concluded with the words, “Just as
apartheid legislation rendered the lives of couples of different racial groups perpetually at risk,
the sodomy offence builds insecurity and vulnerability into the daily lives of gay men. There can
be no doubt that the existence of a law which punishes a form of sexual expression for gay men
degrades and devalues gay men in our broader society. As such it is a palpable invasion of their
dignity and a breach of the Constitution.”

It’s no accident that the recent judgment of the High Court of Delhi in India in July of this year
similarly struck down a provision of the Indian Penal Code that criminalized consensual same
sex conduct, finding that it was a violation of the right to live in privacy and dignity, which
privacy and dignity were constitutionally protected.

In other words, on every conceivable front the anti-homosexuality legislation has not a statutory
leg to stand on.

Yet President Museveni is permitting it to proceed. And at the meeting of Heads of the
Commonwealth, he will, sadly enough, find a throaty gaggle of like-minded colleagues.

It would not surprise us if the Prime Minister of Jamaica were particularly thrilled. Jamaica is, as
everyone knows, a hot-bed of homophobia, more pronounced than anywhere else in the
Caribbean. And while Jamaica would never introduce a bill akin to that of Uganda, the political
leadership in general, and the Prime Minister in particular are willing to sustain a rabidly hostile
environment for all lesbian, gay, bisexual and transgendered people. I visited Jamaica not so long
ago for the precise purpose of examining the relationship between the criminalization of
homosexuality on the one hand and HIV/AIDS on the other. The connection is indisputable. I
met with several of the sexual minority groups, and the stories of hatred and beatings and
harassment and prejudice make the blood run cold.

And so the situation becomes a breeding ground for AIDS. Let it be understood: it’s not
homosexuality that spreads AIDS; it’s the culture that brutalizes gay men and forces them
underground that spreads AIDS. The prevalence rate in the general population of Jamaica is
barely 1.5%. The prevalence rate amongst the community of MSM is over 31%. The HIVpositive
gay men become what UNAIDS calls the classic bridging population … to show that
they’re ‘real’ men and protect themselves from the wrath of society, they marry or take women
as lovers so that their acquired heterosexuality is firmly on display. And then the women get
infected. The cloistered gay sexual behavior, driven by fear and the sodomy laws, keeps them
away from testing and health care and education that would diminish HIV infection. It’s a crazy
equation. But the Prime Minister of Jamaica pays no heed. One can almost imagine President
Museveni and Prime Minister Golding cozying up together around the Commonwealth table as
they share dismissive laughter about the woes of the gay community, while simultaneously
signing the latest Commonwealth declaration on universal human rights.

The trouble is: it’s no laughing matter. Of the 53 countries in the Commonwealth, 40 have
sodomy laws. A majority of states in the Commonwealth Caribbean have a sodomy law: it’s a
sure recipe for the gradual, ineluctable spread of the virus. In a recent report on AIDS, UNAIDS
points out that whereas “ … HIV prevalence is less than 1% among the general population of most countries in the region, it may be between 5 and 20 times higher among men who have sex
with men.” In its Epidemic Update for 2009, issued just today, UNAIDS re-emphasizes the
alarming rates of transmission amongst the MSM populations in the Caribbean. By way of direct
comparison with the Caribbean, every single country in Latin America has removed punitive
legislation directed at homosexuals, making the prevention and treatment of AIDS vastly more

Africa is another throw-back. We’ve finally reached the point where the epidemiologists are
chronicling the spread of AIDS within the homosexual population of the continent. Until now,
the subject was taboo … the possibility of gayness was rejected out of hand. But UNAIDS
provides this disturbing quote: “A recent literature review of HIV infection among men who
have sex with men in Africa identified 19 surveys published through May 2009 from 13
countries, in addition to several unpublished works, highlighting the expansion of available data.
For each country, the HIV prevalence among men who have sex with men was higher than
among the adult male population.” In today’s newly-released Epidemic Update for 2009 to
which I’ve referred, UNAIDS, for the first time ever, devotes a lengthy section to the increasing
evidence of elevated transmission of the virus amongst the MSM population.

In this context, it’s positively criminal to table a parliamentary bill like that of Uganda. It’s one
thing to talk about the promotion of the ‘traditional family’ as the author of the Bill does ad
nauseam; it’s quite another thing to incite the promotion of disease and murder. Gays and
lesbians don’t challenge traditional families; their private sexual practices don’t invade the
sanctity of family life. The accusation is a vile canard. People who plead the supremacy of
family values over other human values have one of two motives: either they’re biblical
fundamentalists whose religiosity has gone haywire, or they’re so steeped in irrational fear of
different sexual orientation that human rights have no meaning.

Ultimately, the Commonwealth has a severe crisis on its hands. It may seem a fortuitous
distraction to focus on the financial downturn and climate change. To be sure, they’re both
important. But roiling just beneath the surface of calm deliberation is this immense civil
libertarian struggle. We know we’ll win the struggle. It’s just a matter of time. It always is. But
in the process, intense pain will be felt, lives will be ruined, people will die. That’s what is too
much to bear. A terrible price is always paid on the incremental road to social justice … in this
case, an entire community held to the ransom of predatory fear.

President Museveni is no fool. He’ll figure a way out before fatal damage is done to his
reputation. But if we want that to come sooner than later, the Commonwealth must put Uganda’s
anti-homosexuality law on its agenda. Someone has to raise it; perhaps Prime Minister Gordon
Brown. It should be collectively agreed that if the law passes, Uganda will be suspended from
the Commonwealth. The credibility of the Commonwealth is hanging by a spider’s thread. The
member states take it less and less seriously. Climate change will be resolved at Copenhagen
next month or Bonn or Mexico City in 2010; nothing will be resolved here at Port of Spain. The
financial crisis will be dealt with by the G8 and G20 in Canada in 2010; nothing will be resolved
here at Port of Spain. If the once-upon-a-time civilized values of the post-colonial
Commonwealth are to be restored, then the monstrous war on homosexuality is the place to start
the restoration.

Uganda makes a perfect beginning.

Remarks on the Ryan White CARE Act

by Orrin Hatch (R-UT)
July 26, 1995
Text from the Congressional Record
( source, with video)

Mr. HATCH. Madam President, they are trying to put together a final agreement so that they can go out tonight. Until they do, let me take a few minutes and express myself on the Ryan White bill.

Madam President, people are dying. People are dying and we have the chance today or tomorrow to enact legislation that will really make a difference–really make a difference in their lives, and the lives of their families and friends who love them.

We have the chance to enact legislation that will help alleviate some of the pain and suffering of individuals who are infected with HIV.

We have a chance to enact bipartisan legislation showing that Congress cares more about people–about people who are critically ill and need our help–than about how those people got ill.

Madam President, in 1981, two physicians unknown to each other, on opposite ends of the United States, made similar observations that they would then publish in their respective medical journals.

They noted that a small group of their otherwise healthy patients were becoming infected with organisms that would normally affect individuals who were for some reason immune-suppressed. In layman’s terms–these patients had a weakened immune system.

By the end of the following year, 1982, almost a thousand cases of the disease had been reported to the Centers for Disease Control. Congress had appropriated $8 million for research to combat this mysterious virus.

Over the next few years, the number of such cases dramatically increased and began to spread throughout the country, as did our realization that the virus, now called acquired immune deficiency syndrome, AIDS, was not going to be eradicated overnight.

Funding for research rose to $44 million in fiscal year 1983, $104 million in fiscal year 1984 and by fiscal year 1990 had reached $3 billion. By 1987, there were cases in each of our 50 States.

As I look back, I recall how AIDS began to touch on each of our daily lives, as the number of cases grew, and the need for increasing research and service-related funding for this growing epidemic.

We began to expand funding beyond the Department of Health and Human Services, to the Department of Defense, the Agency for International Development, and the Bureau of Prisons.

We funded the Department of Labor, the Department of Housing and Urban Development and the Veterans Administration. We provided funding through the Federal Employees Health Benefits Program.

Our response grew with the magnitude of the disease, as it should continue today.

As I think back to the early days of AIDS, and how the growing numbers of infected individuals and the resultant death toll caused this country so much alarm and panic.

Unfortunately, as with any unsuspected crisis, the immediate response from many–including members of both houses of Congress–could be characterized as denial, anger, and blame. Fortunately, over time, our compassion has grown for those infected with this insidious virus, as our understanding about the causes of and treatments for this devastating disease increased.

As I look back, I think of the swift reaction of our health care community, yet how painfully clear it was that both our research and service delivery infrastructures lacked the capacity to address the growing number of cases of HIV infection.

I talked about our growing research effort. I did not talk about the dedication of our scientists, and their ensuing frustration, as a cure–or even a vaccine–continued to elude our grasp.

Today, they still remain outside our grasp.

As I look back, I recall how the service delivery programs evolved–the AIDS service demonstration projects, the home and community-based health services grant programs, and the AIDS drug reimbursement program–yet we still could not keep pace with the need for services in our communities.

They came out of our Labor Committee, and we were proud to authorize those programs which have really served to help people. But they were not enough.

Out of this great need for community-based, compassionate care was born the Ryan White Comprehensive AIDS Resources Emergency [CARE] Act of 1990, a bill I was pleased to author with my colleague from Massachusetts, Senator Kennedy.

We named the bill after Ryan White, a courageous, intelligent and caring young man from Indiana, who worked tirelessly to educate others about HIV and AIDS. Ryan helped replace fear and indifference with hope and compassion. One of the great lessons of his life–that we should not discriminate against those with the HIV virus of other illness–remains true today. His tireless efforts, indeed his legacy, is being carried on by his mother, Jeanne White. And I met with her a number of times. And I have to say she is doing a good job.

There are so many others who have spoken out with the same spirit and eloquence, including Mary Fisher, founder of the Family AIDS Network, who is a tireless crusader against AIDS, and our much-missed friend Elizabeth Glaser, who established the Pediatric AIDS Foundation which has done so much to improve the lives of children infected with HIV.

I can remember when she first walked into my office. I did not know a lot about pediatric AIDS. I knew about adult AIDS. But I did not realize so many children were being infected at that time. When she walked in and explained it to me, I have to say we decided to help her. Our colleagues, Senator Metzenbaum and others, helped her raise her first million dollars for the Pediatric AIDS Foundation at a wonderful dinner here in Washington, DC and she went on from there to raise several more million dollars in the fight against AIDS, and, of course, she is one of the most valued heroines in this country, as far as I am concerned. There have been so many unnamed others in countless communities across the Nation.

Today, we have before us reauthorization of the Ryan White CARE Act.

My message is simple: it is an important act. It must be reauthorized.

The need continues.

Let me discuss a few dramatic facts in order to highlight the tremendous impact of this disease and explain why this bill should be passed.

The most revealing fact is that the No. 1 cause of death for males aged 29 to 44 is now AIDS.

In the last decade, the proportion of cases represented by women has almost tripled.

Even in my small home state of Utah, it is estimated by the Department of Health that there are 5,000 people infected with the HIV virus. To date, 1,110 have been diagnosed with full-blown AIDS, and 644 have died.

Indeed, our knowledge of AIDS has expanded dramatically since those early days.

We now know that AIDS is not a gay disease, or a Haitian disease.

We know that it cannot be transmitted by casual contact.

We know that it affects man, woman and child, whatever race, whatever nationality.

AIDS does not play favorites. It affects rich and poor, adults and children, men and women, rural communities and the inner city.

We know much, but the fear remains.

Madam President, things have changed since 1990. But the need for this legislation remains.

The number of cases continues to increase. At the end of 1994, the Centers for Disease Control and Prevention had recorded 441,528 cases of HIV. The number continues to grow.

The emotional and economic burden for HIV patients and their families is substantial, and it continues.

The Ryan White CARE Act has made a difference and should continue to make a difference.

There is so much that remains to be done.

Since its enactment in 1990, the Ryan White AIDS Care Act has provided the necessary assistance to those persons and their families affected by the AIDS epidemic. Often, the funding provides for models of HIV service delivery that are considered to be some of the most successful health care delivery models in history.

I am very proud of Utah’s Ryan White program. Let me tell you of some of our accomplishments.

Ryan White funds were used to establish a home health services program which provides much needed homemaker, health aide, personal care, and routine diagnostic testing services.

A drug therapy program has been established that offers AZT and other drugs to individuals infected with HIV.

Ryan White funds have been used to provide health and support services through an HIV Care Consortium, which offers vital services such as dental, mental health counseling, transportation, benefits advocacy, eye exams and glasses, legal advocacy, information and education, nutrition counseling, and substance abuse counseling.

These are programs which are in place and which are working. They should be continued.

I believe it is vital that we reauthorize the Ryan White Act.

Madam President, many have noted that AIDS brings out the best and worst in people. Let us hope that this debate reflects the best of the great American traditions of reaching out to those in our community.

I plead with my colleagues today, and I will tomorrow, let us not backslide on this. I wish to compliment the distinguished chairman of the Labor and Human Resources Committee, and the ranking member, Senators Kassebaum and Kennedy, for the work that they have done and for the courageous way that they have gone about it and for the work they have done on the floor here this day. I personally respect both of them very much, and I appreciate what they are doing in this bill.

Our progress has been great, but we have so much more to do to wipe out this virus. Let us hope and pray that one day, like smallpox, the HIV virus will be eradicated as a public health problem, and that is what we are talking about, public health, for everybody. Until then, Ryan White programs offer the only glimmer of hope to thousands of Americans who are living with HIV.

So I wish to thank my esteemed colleagues, especially our floor managers today, Senators Kassebaum and Kennedy and others who have worked so hard to move this important piece of legislation forward. I will work with them in any way I can to see that this legislation is sent to the President as quickly as possible, and I again hope that we can do this probably tomorrow morning.

I thank the Chair.

[Page: S10725]

A Whisper Of AIDS

by Mary Fisher, AIDS Activist
Address To The Republican National Convention
August 19, 1992
Houston, Texas
Click Here to view the speech on Cspan
Related teaching materials

Less than three months ago, at platform hearings in Salt Lake City, I asked the Republican Party to lift the shroud of silence which has been draped over the issue of HIV/AIDS. I have come tonight to bring our silence to an end.

I bear a message of challenge, not self-congratulation. I want your attention, not your applause. I would never have asked to be HIV-positive. But I believe that in all things there is a good purpose, and so I stand before you and before the nation, gladly.

The reality of AIDS is brutally clear. Two hundred thousand Americans are dead or dying; a million more are infected. Worldwide forty million, or sixty million or a hundred million infections will be counted in the coming few years. But despite science and research, White House meetings and congressional hearings, despite good intentions and bold initiatives, campaign slogans and hopeful promises-despite it all, it’s the epidemic which is winning tonight.

In the context of an election year, I ask you-here, in this great hall, or listening in the quiet of your home-to recognize that the AIDS virus is not apolitical creature. It does not care whether you are Democrat or Republican. It does not ask whether you are black or white, male or female, gay or straight, young or old.

Tonight, I represent an AIDS community whose members have been reluctantly drafted from every segment of American society. Though I am white and a mother, I am one with a black infant struggling with tubes in a Philadelphia hospital. Though I am female and contracted this disease in marriage, and enjoy the warm support of my family, I am one with the lonely gay man sheltering a flickering candle from the cold wind of his family ‘s rejection.

This is not a distant threat; it is a present danger. The rate of infection is increasing fastest among women and children. Largely unknown a decade ago, AIDS is the third leading killer of young-adult Americans today-but it won’t be third for long. Because, unlike other diseases, this one travels. Adolescents don’t give each other cancer or heart disease because they believe they are in love. But HIV is different And we have helped it along. We have killed each other-with our ignorance, our prejudice, and our silence.

We may take refuge in our stereotypes but we cannot hide there long. Because HIV asks only one thing of those it attacks: Are you human? And this is the right question: Are you human? Because people with HIV have not entered some alien state of being. They are human. They have not earned cruelty and they do not deserve meanness. They don’t benefit from being isolated or treated as outcasts. Each of them is exactly what God made: a person. Not evil, deserving of our judgment; not victims, longing for our pity. People. Ready for support and worthy of compassion.

My call to you, my Party, is to take a public stand no less compassionate than that of the President and Mrs. Bush. They have embraced me and my family in memorable ways. In the place of judgment, they have shown affection. In difficult moments, they have raised our spirits. In the darkest hours, I have seen them reaching not only to me, but also to my parents, armed with that stunning grief and special grace that comes only to parents who have themselves leaned too long over the bedside of a dying child.

With the President’s leadership, much good has been done; much of the good has gone unheralded; as the President has insisted, “Much remains to be done.”

But we do the President’s cause no good if we praise the American family but ignore a virus that destroys it. We must be consistent if we are to b believed. We cannot love justice and ignore prejudice, love our children and fear to teach them. Whatever our role, as parent or policy maker, we must act as eloquently as we speak-else we have no integrity.

My call to the nation is a plea for awareness. If you believe you are safe, you are in danger. Because I was not hemophiliac, I was not at risk. Because I was not gay, I was not at risk. Because I did not inject drugs, I was not at risk.

My father has devoted much of his lifetime to guarding against another holocaust. He is part of the generation who heard Pastor Niemoeller come out of the Nazi death camps to say, “They came after the Jews and I was not a Jew, so I did not protest. They came after the Trade Unionists, and I was not a Trade Unionist, so I did not protest. They came after the Roman Catholics, and I was not a Roman Catholic, so I did not protest. Then they came after me, and there was no one left to protest.”

The lesson history teaches is this: If you believe you are safe, you are at risk. If you do not see this killer stalking your children, look again. There is no family or community, no race or religion, no place left in America that is safe. Until we genuinely embrace this message, we are a nation at risk.

Tonight, HIV marches resolutely towards AIDS in more than a million American homes, littering its pathway with the bodies of the young. Young men. Young women. Young parents. Young children. One of the families is mine. If it is true that HIV inevitably turns to AIDS, then my children will inevitably turn to orphans.

My family has been a rock of support. My 84-year-old father, who has pursued the healing of the nations, will not accept the premise that he cannot heal his daughter. My mother has refused to be broken; she still calls at mid-night to tell wonderful jokes that make me laugh. Sisters and friends, and my brother Phillip (whose birthday is today)-all have helped carry me over the hardest places. I am blessed, richly and deeply blessed, to have such a family.

But not all of you have been so blessed. You are HIV-positive but dare not say it. You have lost loved ones, but you dared not whisper the word AIDS. You weep silently; you grieve alone.

I have a message for you: It is not you who should feel shame, it is we. We who tolerate ignorance and practice prejudice, we who have taught you to fear. We must lift our shroud of silence, making it safe for you to reach out for compassion. It is our task to seek safety for our children, not in quiet denial but in effective action.

Some day our children will be grown. My son Max, now four, will take the measure of his mother; my son Zachary, now two, will sort through his memories. I may not be here to hear their judgments, but I know already what I hope they are.

I want my children to know that their mother was not a victim. She was a messenger. I do not want them to think, as I once did, that courage is the absence of fear; I want them to know that courage is the strength to act wisely when most we are afraid. I want them to have the courage to step forward when called by their nation, or their Party, and give leadership-no matter what the personal cost. I ask no more of you than I ask of myself, or of my children.

To the millions of you who are grieving, who are frightened, who have suffered the ravages of AIDS firsthand: Have courage and you will find comfort.

To the millions who are strong, I issue this plea: Set aside prejudice and politics to make room for compassion and sound policy.

To my children, I make this pledge: I will not give in, Zachary, because I draw my courage from you. Your silly giggle gives me hope. Your gentle prayers give me strength. And you, my child, give me reason to say to America, “You are at risk.” And I will not rest, Max, until I have done all I can to make your world safe. I will seek a place where intimacy is not the prelude to suffering.

I will not hurry to leave you, my children. But when I go, I pray that you will not suffer shame on my account.

To all within sound of my voice, I appeal: Learn with me the lessons of history and of grace, so my children will not be afraid to say the word AIDS when I am gone. Then their children, and yours, may not need to whisper it at all.

God bless the children, and bless us all.