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March 27, 1983: 1,112 and Counting

Larry Kramer’s call to arms

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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

Shelly

Donald Krintzman

Jerry Green

Michael Maletta

Paul Graham

Toby

Harry Blumenthal

Stephen Sperry

Brian O’Hara

Barry

David

Jeffrey Croland

Z.

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.

L.K.

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AIDS and HIV

White House urged to expand PrEP coverage for injectable form

HIV/AIDS service organizations made call on Wednesday

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Apretude is a long-lasting PrEP injection that has proven to be significantly more effective at reducing the risk of sexually-acquired HIV. (Photo courtesy of ViiV Healthcare)

A coalition of 63 organizations dedicated to ending HIV called on the Biden-Harris administration on Wednesday to require insurers to cover long-acting pre-exposure prophylaxis (PrEP) without cost-sharing.

In a letter to Chiquita Brooks-LaSure, administrator of the Centers for Medicare and Medicaid Services, the groups emphasized the need for broad and equitable access to PrEP free of insurance barriers.

Long-acting PrEP is an injectable form of PrEP that’s effective over a long period of time. The FDA approved Apretude (cabotegravir extended-release injectable suspension) as the first and only long-acting injectable PrEP in late 2021. It’s intended for adults and adolescents weighing at least 77 lbs. who are at risk for HIV through sex.

The U.S. Preventive Services Task Force updated its recommendation for PrEP on Aug. 22, 2023, to include new medications such as the first long-acting PrEP drug. The coalition wants CMS to issue guidance requiring insurers to cover all forms of PrEP, including current and future FDA-approved drugs.

“Long-acting PrEP can be the answer to low PrEP uptake, particularly in communities not using PrEP today,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “The Biden administration has an opportunity to ensure that people with private insurance can access PrEP now and into the future, free of any cost-sharing, with properly worded guidance to insurers.”

Currently, only 36 percent of those who could benefit from PrEP are using it. Significant disparities exist among racial and ethnic groups. Black people constitute 39 percent of new HIV diagnoses but only 14 percent of PrEP users, while Latinos represent 31 percent of new diagnoses but only 18 percent of PrEP users. In contrast, white people represent 24 percent of HIV diagnoses but 64 percent of PrEP users.

The groups also want CMS to prohibit insurers from employing prior authorization for PrEP, citing it as a significant barrier to access. Several states, including New York and California, already prohibit prior authorization for PrEP.

Modeling conducted for HIV+Hep, based on clinical trials of a once every 2-month injection, suggests that 87 percent more HIV cases would be averted compared to daily oral PrEP, with $4.25 billion in averted healthcare costs over 10 years.

Despite guidance issued to insurers in July 2021, PrEP users continue to report being charged cost-sharing for both the drug and ancillary services. A recent review of claims data found that 36 percent of PrEP users were charged for their drugs, and even 31 percent of those using generic PrEP faced cost-sharing.

The coalition’s letter follows a more detailed communication sent by HIV+Hepatitis Policy Institute to the Biden administration on July 2.

Signatories to the community letter include Advocates for Youth, AIDS United, Equality California, Fenway Health, Human Rights Campaign, and the National Coalition of STD Directors, among others.

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AIDS and HIV

Young gay Latinos see rising share of new HIV cases, leading to call for targeted funding

Fernando Hermida diagnosed four months after asking for asylum

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Fernando Hermida drives to Orlando, Fla., to attend a medical appointment for HIV care on May 27, 2024. (Associated Press photo by Laura Bargfeld)

Four months after seeking asylum in the U.S., Fernando Hermida began coughing and feeling tired. He thought it was a cold. Then sores appeared in his groin and he would soak his bed with sweat. He took a test.

On New Year’s Day 2022, at age 31, Hermida learned he had HIV.

“I thought I was going to die,” he said, recalling how a chill washed over him as he reviewed his results. He struggled to navigate a new, convoluted health care system. Through an HIV organization he found online, he received a list of medical providers to call in D.C., where he was at the time, but they didn’t return his calls for weeks. Hermida, who speaks only Spanish, didn’t know where to turn.

By the time of Hermida’s diagnosis, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nation’s HIV epidemic by pumping hundreds of millions of dollars annually into certain states, counties, and U.S. territories with the highest infection rates. The goal was to reach the estimated 1.2 million people living with HIV, including some who don’t know they have the disease.

Overall, estimated new HIV infection rates declined 23 percent from 2012 to 2022. But a KFF Health News-Associated Press analysis found the rate has not fallen for Latinos as much as it has for other racial and ethnic groups.

While African Americans continue to have the highest HIV rates in the U.S. overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, per the most recent data available, compared with other racial and ethnic groups. Latinos, who make up about 19 percent of the U.S. population, accounted for about 33 percent of new HIV infections, according to the Centers for Disease Control and Prevention.

The analysis found Latinos are experiencing a disproportionate number of new infections and diagnoses across the U.S., with diagnosis rates highest in the Southeast. Public health officials in Mecklenburg County, North Carolina, and Shelby County, Tennessee, where data shows diagnosis rates have gone up among Latinos, told KFF Health News and the AP that they either don’t have specific plans to address HIV in this population or that plans are still in the works. Even in well-resourced places like San Francisco, HIV diagnosis rates grew among Latinos in the last few years while falling among other racial and ethnic groups despite the county’s goals to reduce infections among Latinos.

“HIV disparities are not inevitable,” Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, said in a statement. She noted the systemic, cultural, and economic inequities — such as racism, language differences, and medical mistrust.

And though the CDC provides some funds for minority groups, Latino health policy advocates want HHS to declare a public health emergency in hopes of directing more money to Latino communities, saying current efforts aren’t enough.

“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.

Lost without an interpreter

Hermida suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. In late January 2022, months after his symptoms started, he went to a clinic in New York City that a friend had helped him find to finally get treatment for HIV.

Too sick to care for himself alone, Hermida eventually moved to Charlotte to be closer to family and in hopes of receiving more consistent health care. He enrolled in an Amity Medical Group clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the nation diagnosed with HIV, regardless of their citizenship status.

His HIV became undetectable after he was connected with case managers. But over time, communication with the clinic grew less frequent, he said, and he didn’t get regular interpretation help during visits with his English-speaking doctor. An Amity Medical Group representative confirmed Hermida was a client but didn’t answer questions about his experience at the clinic.

Hermida said he had a hard time filling out paperwork to stay enrolled in the Ryan White program, and when his eligibility expired in September 2023, he couldn’t get his medication.

He left the clinic and enrolled in a health plan through the Affordable Care Act marketplace. But Hermida didn’t realize the insurer required him to pay for a share of his HIV treatment.

In January, the Lyft driver received a $1,275 bill for his antiretroviral — the equivalent of 120 rides, he said. He paid the bill with a coupon he found online. In April, he got a second bill he couldn’t afford.

For two weeks, he stopped taking the medication that keeps the virus undetectable and intransmissible.

“Estoy que colapso,” he said. I’m falling apart. “Tengo que vivir para pagar la medicación.” I have to live to pay for my medication.

One way to prevent HIV is preexposure prophylaxis, or PrEP, which is regularly taken to reduce the risk of getting HIV through sex or intravenous drug use. It was approved by the federal government in 2012 but the uptake has not been even across racial and ethnic groups: CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.

Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance.

Carlos Saldana, an infectious disease specialist and former medical adviser for Georgia’s health department, helped identify five clusters of rapid HIV transmission involving about 40 gay Latinos and men who have sex with men from February 2021 to June 2022. Many people in the cluster told researchers they had not taken PrEP and struggled to understand the health care system.

They experienced other barriers, too, Saldana said, including lack of transportation and fear of deportation if they sought treatment.

Latino health policy advocates want the federal government to redistribute funding for HIV prevention, including testing and access to PrEP. Of the nearly $30 billion in federal money that went toward things like HIV health care services, treatment, and prevention in 2022, only 4% went to prevention, according to a KFF analysis.

They suggest more money could help reach Latino communities through efforts like faith-based outreach at churches, testing at clubs on Latin nights, and training bilingual HIV testers.

Latino rates going up

Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, and jurisdictions that get the money are to invest 25 percent of it in community-based organizations. But the initiative lacks requirements to target any particular groups, including Latinos, leaving it up to the cities, counties, and states to come up with specific strategies.

In 34 of the 57 areas getting the money, cases are going the wrong way: Diagnosis rates among Latinos increased from 2019 to 2022 while declining for other racial and ethnic groups, the KFF Health News-AP analysis found.

Starting Aug. 1, state and local health departments will have to provide annual spending reports on funding in places that account for 30 percent or more of HIV diagnoses, the CDC said. Previously, it had been required for only a small number of states.

In some states and counties, initiative funding has not been enough to cover the needs of Latinos.

South Carolina, which saw rates nearly double for Latinos from 2012-2022, hasn’t expanded HIV mobile testing in rural areas, where the need is high among Latinos, said Tony Price, HIV program manager in the state health department. South Carolina can pay for only four community health workers focused on HIV outreach — and not all of them are bilingual.

In Shelby County, Tennessee, home to Memphis, the Latino HIV diagnosis rate rose 86 percent from 2012 to 2022. The health department said it got $2 million in initiative funding in 2023 and while the county plan acknowledges that Latinos are a target group, department director Michelle Taylor said: “There are no specific campaigns just among Latino people.”

Up to now, Mecklenburg County, North Carolina, didn’t include specific targets to address HIV in the Latino population — where rates of new diagnoses more than doubled in a decade but fell slightly among other racial and ethnic groups. The health department has used funding for bilingual marketing campaigns and awareness about PrEP.

Moving for medicine

When it was time to pack up and move to Hermida’s third city in two years, his fiancé, who is taking PrEP, suggested seeking care in Orlando, Fla.

The couple, who were friends in high school in Venezuela, had some family and friends in Florida, and they had heard about Pineapple Healthcare, a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.

The clinic is housed in a medical office south of downtown Orlando. Inside, the mostly Latino staff is dressed in pineapple-print turquoise shirts, and Spanish, not English, is most commonly heard in appointment rooms and hallways.

“At the core of it, if the organization is not led by and for people of color, then we’re just an afterthought,” said Andres Acosta Ardila, the community outreach director at Pineapple Healthcare, who was diagnosed with HIV in 2013.

“¿Te mudaste reciente, ya por fin?” asked nurse practitioner Eliza Otero. Did you finally move? She started treating Hermida while he still lived in Charlotte. “Hace un mes que no nos vemos.” It’s been a month since we last saw each other.

They still need to work on lowering his cholesterol and blood pressure, she told him. Though his viral load remains high, Otero said it should improve with regular, consistent care.

Pineapple Healthcare, which doesn’t receive initiative money, offers full-scope primary care to mostly Latino males. Hermida gets his HIV medication at no cost there because the clinic is part of a federal drug discount program.

The clinic is in many ways an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third from 2012 through 2022, while dropping by a third for others. Florida has the third-largest Latino population in the U.S., and had the seventh-highest rate of new HIV diagnoses among Latinos in the nation in 2022.

Hermida, whose asylum case is pending, never imagined getting medication would be so difficult, he said during the 500-mile drive from North Carolina to Florida. After hotel rooms, jobs lost, and family goodbyes, he is hopeful his search for consistent HIV treatment — which has come to define his life the past two years — can finally come to an end.

“Soy un nómada a la fuerza, pero bueno, como me comenta mi prometido y mis familiares, yo tengo que estar donde me den buenos servicios médicos,” he said. I’m forced to be a nomad, but like my family and my fiancé say, I have to be where I can get good medical services.

That’s the priority, he said. “Esa es la prioridad ahora.”

KFF Health News and The Associated Press analyzed data from the U.S. Centers for Disease Control and Prevention on the number of new HIV diagnoses and infections among Americans ages 13 and older at the local, state, and national levels. This story primarily uses incidence rate data — estimates of new infections — at the national level and diagnosis rate data at the state and county level.

Bose reported from Orlando, Fla.. Reese reported from Sacramento, Calif. AP video journalist Laura Bargfeld contributed to this report.

The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

A Project of KFF Health News and the Associated Press co-published by Univision Noticias

CREDITS:

Reporters: Vanessa G. Sánchez, Devna Bose, Phillip Reese

Cinematography: Laura Bargfeld

Photography: Laura Bargfeld, Phelan M. Ebenhack

Video Editing: Federica Narancio, Kathy Young, Esther Poveda

Additional Video: Federica Narancio, Esther Poveda

Web Production: Eric Harkleroad, Lydia Zuraw

Special thanks to Lindsey Dawson

Editors: Judy Lin, Erica Hunzinger

Data Editor: Holly Hacker

Social Media: Patricia Vélez, Federica Narancio, Esther Poveda, Carolina Astuya, Natalia Bravo, Juan Pablo Vargas, Kyle Viterbo, Sophia Eppolito, Hannah Norman, Chaseedaw Giles, Tarena Lofton

Translation: Paula Andalo

Copy Editing: Gabe Brison-Trezise

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.

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AIDS and HIV

Researchers announce using gene editing tool, HIV cut out of cells

The team eliminated HIV from cells in a laboratory raising hopes of a cure, but cautioned that for now their work represents proof of concept

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HIV virus in the bloodstream. (Photo Credit: National Institutes of Health)

BARCELONA, Spain – Researchers from the Amsterdam University Medical Center made a groundbreaking announcement this week of the results of a major study to be presented at the 2024 European Congress of Clinical Microbiology and Infectious Diseases, which will be held April 27-30 in Barcelona.

A team led by Dr. Elena Herrera-Carrillo using a gene-editing tool known as Crispr-Cas, were able to eliminate HIV DNA, removing all traces of the virus from infected cells. In the press release Tuesday, Dr. Herrera-Carrillo alongside team members Yuanling Bao, Zhenghao Yu and Pascal Kroon, said that utilizing the gene-editing tool they focused on parts of the virus that stay the same across all known HIV strains.

“These findings represent a pivotal advancement towards designing a cure strategy,” the team said.

Herrera-Carrillo’s team works in developing a cure for HIV infection based on novel CRISPR-Cas methods.  CRISPR-Cas is a powerful gene editing tool working like genetic scissors but can also be used to selectively attack and inactivate integrated HIV DNA genomes in infected cells.

Herrera-Carrillo’s team eliminated HIV from cells in a laboratory, raising hopes of a cure, but cautioned that for now their work represents proof of concept, and will not become a cure for HIV tomorrow. According to the researchers the next steps involve optimizing the delivery route to target the majority of the HIV reservoir cells within the body.

The hope the research team points out, is to devise a strategy to make this system as safe as possible for future clinical applications, and achieve the right balance between efficacy and safety. “Only then can we consider clinical trials of ‘cure’ in humans to disable the HIV reservoir,” they stated adding, “While these preliminary findings are very encouraging, it is premature to declare that there is a functional HIV cure on the horizon.”

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AIDS and HIV

Gilead Sciences awards grants to HIV/AIDS groups in Caribbean, Latin America

Stigma, criminalization laws among barriers to fighting pandemic in region

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Free condoms in a São Paulo Metro station. Gilead Sciences has announced it has given grants to 35 organizations in Latin America and the Caribbean. The groups will use the funds to fight HIV/AIDS in the region. (Washington Blade photo by Michael K. Lavers)

FOSTER CITY, Calif. — Gilead Sciences this week announced it has given $4 million in grants to 35 organizations in Latin America and the Caribbean that fight HIV/AIDS.

A press release notes Asociación Panamericana de Mercadeo Social (Pan-American Association of Social Marketing) in Nicaragua, Fundación Genesis (Genesis Foundation) in Panama, Fundación por una Sociedad Empoderada (Foundation for an Empowered Society) in Argentina, Associação Nacional de Travestis e Transexuais (National Association of Travestis and Transsexuals) in Brazil and Caribbean Vulnerable Communities are among the groups that received grants. Gilead notes this funding through its Zeroing In: Ending the HIV Epidemic in Latin America and the Caribbean will “improve access to care, increase health equity and reduce HIV-related stigma for populations most affected by HIV.”

“The HIV prevention and care needs of people throughout Latin America and the Caribbean are incredibly diverse, and each of these programs addresses a unique community challenge,” said Gilead Vice President of Corporate Giving Carmen Villar. “Our grantees are deeply embedded in their communities and best positioned to provide needed HIV care and support services.” 

“Their expertise will be essential to achieve the Zeroing In program’s goals of improving access to comprehensive care among priority populations, decreasing HIV-related stigma and reducing HIV and broader health inequities,” she added.

The pandemic disproportionately affects Transgender people and sex workers, among other groups, in the region. Activists and HIV/AIDS service providers in the region with whom the Washington Blade has previously spoken say discrimination, stigma, poverty, a lack of access to health care and criminalization laws are among the myriad challenges they face.

First Lady Jill Biden in 2022 during a trip to Panama announced the U.S. will provide an additional $80.9 million in the fight against HIV/AIDS in Latin America through the President’s Emergency Plan for AIDS Relief. 

Cuba in 2015 became the first country in the world to eliminate mother-to-child transmission of HIV. The Cuban government until 1993 forcibly quarantined people with HIV/AIDS in state-run sanitaria.

Antigua and Barbuda, St. Kitts and Nevis, Barbados and Trinidad and Tobago in recent years have decriminalized consensual same-sex sexual relations. 

The Inter-American Commission on Human Rights in 2021 ruled Jamaica must repeal its colonial-era sodomy law. The country’s Supreme Court last year ruled against a gay man who challenged it.  

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AIDS and HIV

Local, national events to mark 35th annual World AIDS Day

HIV disproportionately affects certain populations. Men who have sex with men accounted for 70% of 32,100 estimated new HIV infections

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(Washington Blade photo by Michael Key)

WASHINGTON – UNAIDS dubbed this year’s World AIDS Day theme as “Let Communities Lead.” This is how conversations around HIV and AIDS should be structured, Duante’ Brown said, who manages two programs at NMAC — a nonprofit dedicated to working to end the AIDS epidemic. People living with HIV need to be considered the subject matter experts, he said. 

“Bringing those people into the room, showing them that they have a voice and that there’s not just this group of people who are making a decision for them … is definitely the way that you go about this.”

Brown manages the ESCALATE program at NMAC, which aims to empower people to address HIV stigma, and the ELEVATE program, which is a training program for people with HIV to be more involved in the planning and delivery of the Ryan White HIV/AIDS Program, which is the largest federal program designed specifically for people with HIV. 

In the United States, it’s estimated 1.2 million people are living with HIV, according to HIV.gov. About 13% are unaware they have HIV.

HIV also continues to disproportionately affect certain populations. Men who have sex with men accounted for 70% of the 32,100 estimated new HIV infections in 2021. And Black individuals accounted for 40% of the new infections that year, while only comprising 12% of the population of the United States, according to the CDC

In 2023, stigma is a key inhibitor to ending the epidemic, Brown said. When stigma gets out of the way, there could be a day when there are no new cases of HIV transmissions, he said. To get around that stigma, people need to have meaningful and productive conversations about AIDS. 

“Not treating it as taboo, making sure that we are empowering people living with HIV and AIDS to tell their stories and to be empowered to feel that it’s OK,” Brown said. “And that nothing is wrong with you.”

And there are events in the locally and nationally to recognize World AIDS Day, many of them aimed at abolishing the stigma that comes with talking about HIV.

Icon Janet Jackson headlines the World AIDS Day Concert on Dec. 1 in Houston.

At a national level, Janet Jackson is set to headline the World AIDS Day concert on Dec. 1 — an annual fundraiser sponsored by the AIDS Healthcare Foundation. The concert will be at the NRG Arena in Houston, and will also honor actor and activist Blair Underwood with its lifetime achievement award. 

“[The concert] really is a way to commemorate World AIDS Day in a way that is both remembrance of those that we’ve lost, recognizing where we’re at, but also really celebrating and connecting the work that’s yet to be done. And having folks still leaving uplifted and elevated about what the future could hold,” said Imara Canady, AHF’s national director for communications and community engagement. 

Jackson has long been an outspoken advocate for people living with HIV. Her song, “Together Again,” is a tribute to a friend she lost to AIDS, as well as a dedication to patients around the world. 

The AIDS Healthcare Foundation, the largest nonprofit HIV/AIDS service organization and advocacy group, has several health care centers in the region and many across the nation and world. AHF also has a free HIV test locater online at freehivtest.net

AIDSWatch, the electronic memorial to people lost to HIV and AIDS, will be viewable on www.AIDSWatch.org and on the City of West Hollywood’s WeHoTV broadcast and streaming channels, including Spectrum Channel 10 within West Hollywood, beginning at 12:01 a.m. on Thursday, Dec. 1, for 24 hours.

The City of West Hollywood will join STORIES: The AIDS Monument and APLA Health in a World AIDS Day event on Friday, Dec. 1. The evening will begin at 5:30 p.m. with a reception at the West Hollywood Park Aquatic and Recreation Center (ARC) Respite Deck, located at 8750 El Tovar Place.

After a short program with refreshments, attendees will descend the grand staircase of the ARC at 6:30 p.m. in a candlelight procession through West Hollywood Park and along N. Robertson, Santa Monica, and N. San Vicente Boulevards to the City’s Council Chambers/Public Meeting Room, located at 625 N. San Vicente Boulevard. There, the evening will continue with a screening of the award-winning 2023 documentary “Commitment to Life.” Doors will open at 7 p.m. and the screening will begin promptly at 7:15 p.m. 

Events are free to attend and open to the public. Limited validated parking will be available at the West Hollywood Park 5-Story structure. 

Advance RSVP is requested by reserving a spot on Eventbrite.

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AIDS and HIV

Maxine Waters criticizes House GOP over proposed cuts to HIV/AIDS programs

Calif. Democrat spoke at U.S. Conference on HIV/AIDS in D.C.

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U.S. Rep. Maxine Waters (D-Calif.) speaks at the U.S. Conference on HIV/AIDS on Sept. 6, 2023, in Washington. (Washington Blade photo by Michael Key)

WASHINGTON — U.S. Rep. Maxine Waters (D-Calif.) on Wednesday sharply criticized House Republicans over their proposed cuts to HIV/AIDS prevention programs.

The California Democrat who represents the state’s 43rd Congressional District in a speech she delivered at the U.S. Conference on HIV/AIDS noted the House Appropriations Committee’s Fiscal Year 2024 Labor, Health, Human Services, Education and Related Agencies Appropriations Bill would cut $767 million from domestic HIV/AIDS programs.

Waters said the bill would cut funds to fight HIV/AIDS among underrepresented groups by 53 percent and “completely eliminates” funding for “Minority AIDS Initiative activities within the Substance Abuse and Mental Health Services Administration.” Waters also noted the appropriations measure “eliminates funding” for the Centers for Disease Control and Prevention’s Ending the HIV Epidemic Initiative, the Ryan White HIV/AIDS Program and community health centers.

“The cuts to the Minority AIDS Initiative will exacerbate racial disparities and the elimination of the (Ending the) HIV Epidemic Initiative,” said Waters.

Waters also criticized House Republicans for “refusing to authorize” the President’s Emergency Plan for AIDS Relief.” The California Democrat said ending PEPFAR “would endanger the lives of millions of people around the world who are living with HIV and endanger the lives of millions more who are at risk.” 

“Moreover, it would compromise United States leadership on global health issues,” added Waters. “These programs used to have widespread support. It’s shameful that House Republicans are now trying to eliminate them. We cannot allow these cuts to pass. We cannot compromise. We will not give up.”

U.S. Reps. Jim Jordan (R-Ohio) and Marjorie Taylor Greene (R-Ga.) are among those who Waters criticized by name in her speech.

“I will speak truth to power. I want to use words that they will understand. Hell no! We won’t go! We are not going to give up,” said Waters. “That’s the people’s money. You can’t decide who you’re going to spend it on and not who you’re going to spend it on.”

More than 3,000 people are expected to attend the National Minority AIDS Council-organized conference that will end on Saturday. This year’s theme is “A Love Letter to Black Women.”

“We need a love letter to Black women,” said Waters. “We need it not only from this conference. We need it from our families often times. We need it from our communities. We need it from the churches that we give so much attention to and give our resources to and don’t really get it back. We need a love letter coming from all over this country for what we have suffered, for what we have endured, for the way that we have been denied and for the way that we have been ostracized.” 

Waters in her speech specifically praised former Massachusetts Congressman Barney Frank and the late U.S. Sen. Ted Kennedy (D-Mass.) for their work in support of LGBTQ+ rights and efforts to combat HIV/AIDS. Waters also thanked Jewel Thais-Williams, who opened Catch One, a bar and restaurant on Pico Boulevard in Los Angeles that became a refuge for people with HIV/AIDS.

“They had nowhere to gather, nowhere to go, nowhere to be recognized as people who needed support,” said Waters.

B. Kaye Hayes, deputy assistant secretary for infectious disease in the Office of the Assistant Secretary for Health who is also the executive director of the Presidential Advisory Council on HIV/AIDS, is among those who are expected to speak at the conference. Mark S. King, an HIV/AIDS activist and blogger who published “My Fabulous Disease: Chronicles of a Gay Survivor” on Sept. 1, is scheduled to talk on Thursday.

Cal Benn contributed to this story.

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AIDS and HIV

American Red Cross ends ban on blood donations by gay men

Many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation

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Photo Credit: American Red Cross

WASHINGTON – The American Red Cross announced a historic change in the organization’s policies regarding blood donations by gay and bisexual men. Under this new donor screening process, all donors answer the same eligibility questions regardless of gender or sexual orientation and will be assessed for blood donation based on individual risk factors, not on sexual orientation.

This change by the Red Cross falls within the U.S. Food and Drug Administration finalized guidelines for blood donation issued this past May that will use a uniform individualized risk assessment questionnaire for respondents regardless of their sexual orientation, sex, or gender.

In a statement the Red Cross noted:

“This change means many healthy individuals who previously could not give will now be able to support their community through the gift of blood donation.

Andrew Goldstein, a cancer researcher from Los Angeles, was a regular blood donor in his younger years before the FDA’s previous policies made him ineligible to donate as a gay man. His desire to influence change compelled him to register as a participant in the FDA funded ADVANCE Study in 2021, which sought to gather data to evaluate the possibility of moving to an individual donor assessment. He is proud he was able to be part of the study that led to this change and is excited to finally be able to give blood again.

“There’s so much in the world that you can’t help with, and you sometimes have to see people going through difficult times, but something like giving blood feels like something so small that you can do, and it means a lot to me that I’ll be able to do that again,” said Andrew. Now, Andrew and many others are able to share their good health with patients in need of lifesaving transfusions.”

The FDA’s new protocols issued in May note that prospective donors who have had a new sexual partner, or more than one sexual partner in the past three months, and anal sex in the past three months, would be ineligible.

So would those who are “taking medications to treat or prevent HIV infection (e.g., antiretroviral therapy (ART), pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP),” because these drugs can delay the detection of HIV.

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AIDS and HIV

Elton John AIDS Foundation launches ambitious new initiative

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters to let their #InnerElton out

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Elton John & David Furnish at Oscars Viewing Party 2021 (Screenshot/YouTube Hollywood TV)

NEW YORK – The Rocket Fund is the Elton John AIDS Foundation’s latest transformative $125 million campaign to redouble the fight against AIDS everywhere. Growing levels of stigmatization, marginalization, and poverty have led to high rates of HIV and low access to healthcare globally. 

“For years, HIV/AIDS has caused enormous pain across the world, but I pray that soon this epidemic will be a thing of the past” said Sir Elton John. “More than 30 years after I launched the Elton John AIDS Foundation, my passion for reaching everyone, everywhere with education and compassionate care is still as strong as ever. The Rocket Fund will turbo-charge our mission and reach those most at risk from this terrible disease. Now is the time. This epidemic has gone on too long. We must all act together to see AIDS defeated in our lifetimes.”

Money from the fund will go towards supporting access to HIV prevention and treatment services, including providing access to HIV tests, antiretroviral therapies, and Pre-Exposure Prophylaxis (PrEP), according to the press release. Donatella Versace, one of the Rocket Fund’s co-chairs — alongside Furnish, Tani Austin, and David Geffen — has also pledged to match donations to the fund up to $300,000 during the month of June.

Throughout Pride Month, Sir Elton John and the co-chairs of The Rocket Fund are challenging supporters to let their #InnerElton out. Letting your #InnerElton out is about proudly expressing your authentic self, showing love for others and taking compassionate action. Supporters are encouraged to join the movement by posting photos of themselves on social media wearing their own take on Elton’s signature looks – or whatever makes them feel their true self – with the hashtag #InnerElton. Many notables are joining to let their #InnerElton out, including Dolly Parton, Michaela Jaé Rodriguez, JoJo Siwa, Heidi Klum, Smokey Robinson and more. Learn more here. The Let Your Inner Elton Out campaign was created by advertising agency Invisible Man and produced in partnership with global communications agency BCW.

The Foundation launched this critical initiative on June 5, the day in 1981 when the Centers for Disease Control released its first report on what would become the AIDS epidemic. This inaugural Rocket Day commemorates the early days of the fight against HIV/AIDS, while committing to accelerate progress towards ending AIDS for all.

“The end of the HIV/AIDS epidemic is within sight, and The Rocket Fund is the push we need to finally cross the horizon,” said David Furnish, Chairman of the Elton John AIDS Foundation. “To end AIDS, we must make targeted investments that can level the playing field, by tackling the inequalities and stigma that prevent people from accessing the care they desperately need. By joining The Rocket Fund and our mission, you can help transform the future for millions of people globally.”

“As we’ve learned through the global fight to stop COVID-19, epidemics do not recognize state borders, economic or cultural differences. If left unchecked, they only worsen with devastating impacts on the most vulnerable,” said Anne Aslett, Chief Executive Officer of the Elton John AIDS Foundation. “It is critical that we meet this moment to connect vulnerable people with the care and resources they need to live vibrant, healthy lives and we welcome all who want to see an end to this disease to join us.”

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AIDS and HIV

New data shows HIV infections dropped- mostly among whites

Significant decline in new HIV infections, but impact of prevention efforts far less substantial for Black and Hispanic-Latino populations

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Centers for Disease Control and Prevention headquarters in Atlanta. (Photo Credit: CDC/GSA)

ATLANTA – Data published Tuesday. by the Centers for Disease Control and Prevention shows a significant decline in new HIV infections, but suggests the impact of prevention efforts was far less substantial for Black and Latino populations.

From 2017 to 2021, as rates of HIV testing, treatment, and the use of pre-exposure prophylaxis (PrEP) medication rose, new cases dropped by 12 percent overall and by as much as 34 percent among gay and bisexual males aged 13 to 24.

The numbers show a “move in the right direction,” CDC Director Rochelle Walensky said in a press release.

However, when broken down by race, the CDC found new infections were down by 27 percent and 36 percent, respectively, among Black and Hispanic-Latino populations, compared with 45 percent of whites.

Similarly, by 2021 about one third of those who are considered eligible were taking PrEP for HIV prevention, but the CDC noted this number includes “relatively few Black people or Hispanic/Latino people” despite the significant increase in prescriptions up from just 13 percent in 2017.

“Longstanding factors, such as systemic inequities, social and economic marginalization and residential segregation,” Walensky noted, continue to act as barriers “between highly effective HIV treatment and prevention and people who could benefit from them.”

She added, “Efforts must be accelerated and strengthened for progress to reach all groups faster and equitably.”

Robyn Neblett Fanfair, acting director of the CDC’s Division of HIV Prevention, said that “At least three people in the U.S. get HIV every hour—at a time when we have more effective prevention and treatment options than ever before.”

“These tools must reach deep into communities and be delivered faster to expand progress from some groups to all groups,” she said.

The HIV+Hepatitis Policy Institute issued a press release following the CDC’s announcement of the new data, noting both the encouraging progress and need for improvement.

“It appears that our investments in HIV prevention are providing some positive results, but the persistent high number of new diagnoses and the low usage of PrEP among the communities most impacted by HIV point to the need for increased resources, particularly for a national PrEP program,” said the group’s executive director, Carl Schmid.

President Joe Biden’s FY24 budget requested $237 million for a national PrEP program along with $850 million to support the U.S. Department of Health and Human Services’ “Ending the HIV Epidemic in the U.S.” initiative.

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AIDS and HIV

President’s Emergency Plan for AIDS Relief marks year 20

Achievements PEPFAR have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community

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President George W. Bush signing PEPFAR’s authorizing legislation January 28, 2003. (Photo Credit: George W. Bush Presidential Center)

WASHINGTON – The President’s Emergency Plan for AIDS Relief (PEPFAR) marks its twenty year anniversary today, marking the largest commitment by any nation to address a single disease in the world.

The initiative which was personally led and launched by former President George W. Bush in 2003,  its funding has totaled more than $110 billion to date, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor.

PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.  The White House today released a statement by President Joe Biden marking the 20th Anniversary:

Twenty years ago today, President George W. Bush declared that preventing and treating HIV/AIDS was a foreign policy priority of the United States. At a time when nearly 30 million people were HIV positive, but very few were receiving life-saving medicines, the President’s Emergency Plan for AIDS Relief (PEPFAR) transformed the global AIDS response and laid a marker for America’s commitment to countries that were impacted the hardest by the AIDS epidemic. Helping lead the bipartisan effort in Congress to authorize PEPFAR is among my proudest achievements from my time in the Senate. To this day, PEPFAR remains a powerful example of America’s unmatched ability to drive progress and make life better for people around the world.
 
Since 2003, PEPFAR has saved more than 25 million lives and dramatically improved health outcomes in more than 55 partner countries. AIDS-related deaths have declined by 68 percent since their peak in 2004, and new HIV infections are down 42 percent. PEPFAR investments have ensured that 5.5 million babies have been born HIV-free. And two decades of investment in partner nations’ health systems played a critical role in countries’ ability to respond to other health crises such as COVID-19, Mpox, and Ebola.    
 
Today, PEPFAR continues to support 20.1 million people around the world with HIV/AIDS treatment, and my Administration is committed to continuing to lead the global HIV/AIDS response. We will build on our decades of progress to reach the Sustainable Development Goal of ending AIDS by 2030, work to eliminate the stigma and inequities that keep people from accessing care, and keep the voices of people living with HIV/AIDS at the center of our response.  I look forward to working with Congress on PEPFAR’s reauthorization this year.

PEPFAR is overseen by the U.S. Global AIDS Coordinator, who is appointed by the President, confirmed by the Senate, and reports directly to the Secretary of State, as established through PEPFAR’s authorizing legislation.

PEPFAR’s original authorization established new structures and authorities, consolidating all U.S. bilateral and multilateral activities and funding for global HIV/AIDS. Several U.S. agencies, host country governments, and other organizations are involved in implementation.

Dr. John Nkengasong, the current coordinator was sworn in on June 13, 2022, and holds the rank of Ambassador leading the Office of the Global AIDS Coordinator (OGAC) at the U.S. Department of State.

Nobel Prize winning scientist Harold Varmus, who served as Director of the National Institutes of Health (NIH) from 1993 to 1999 and currently the Lewis Thomas University Professor of Medicine at Weill Cornell Medicine in New York City, wrote in an article honoring World Aids Day 2013:

[…] “the PEPFAR story must begin with George W. Bush and his wife, Laura, and their interests in AIDS, Africa, and what Bush termed “compassionate conservatism.” According to his 2010 memoir, Decision Points, the two of them developed a serious interest in improving the fate of the people of Africa after reading Alex Haley’s Roots and visiting The Gambia in 1990.3 In 1998, while pondering a run for the U.S. presidency, he discussed Africa with Condoleezza Rice, his future secretary of state; she said that, if elected, working more closely with countries on that continent should be a significant part of his foreign policy. She also told him that HIV/AIDS was a central problem in Africa but that the United States was spending only $500 million per year on global AIDS, with the money spread across six federal agencies, without a clear strategy for curbing the epidemic.”

Key Facts (As provided by Kaiser Health & Family Foundation)

  • Although the U.S. has been involved in efforts to address the global AIDS crisis since the mid-1980s, the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003 marked a significant increase in funding and attention to the epidemic.
  • PEPFAR is the largest commitment by any nation to address a single disease in the world; to date, its funding has totaled more than $110 billion, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor. PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.
  • U.S. funding for PEPFAR grew from $2.2 billion in FY 2004 to $7.0 billion in FY 2022; FY 2022 funding includes $5.4 billion provided for bilateral HIV efforts and $1.6 billion for multilateral efforts ($50 million for UNAIDS and $1.56 billion for the Global Fund).
  • As the COVID-19 pandemic continues to have profound effects across the world, PEPFAR has acted to respond to COVID-19 in countries that receive support in order to minimize HIV service disruptions and leverage the program’s capabilities to address COVID-19 more broadly.
  • Looking ahead, PEPFAR faces several issues and challenges, including how best to: address the short- and long-term impacts of COVID-19 on PEPFAR and the HIV response; accelerate progress toward epidemic control in the context of flat funding; support and strengthen community-led responses and the sustainability of HIV programs; define its role in global health security and broader health systems strengthening efforts; and continue to coordinate with other key players in the HIV ecosystem, including the Global Fund.

Key Activities and Results (As provided by Kaiser Health & Family Foundation)

PEPFAR activities focus on expanding access to HIV prevention, treatment, and care interventions. These include provision of antiretroviral treatment, pre-exposure prophylaxis, voluntary male circumcision, condoms, and other commodities related to HIV services. In addition, PEPFAR has launched specific initiatives in key strategic areas. For example, in 2015, PEPFAR launched DREAMS, a public-private partnership that aims to reduce HIV infections in adolescent girls and young women.

The latest results reported by PEPFAR indicate that it has:

  • supported testing services for 63.4 million people in FY 2021;
  • prevented 2.8 million babies from being born with HIV, who would have otherwise been infected;
  • provided care for more than 7.1 million orphans and vulnerable children (OVC);
  • supported training for nearly 300,000 new health care workers; and
  • supported antiretroviral treatment for 18.96 million people.
  • In the 15 countries implementing the DREAMS initiative, new diagnoses among adolescent girls and young women have declined with most DREAMS areas (96%) experiencing declines greater than 25% and nearly two-thirds with declines greater than 40%.

The achievements of the PEPFAR program have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community and the developing world. In general, milestones have been met, the program has been enlarged (for instance, to include some research on implementation of medical assistance), the roster of PEPFAR countries has grown and spending plans have not been exceeded.

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