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The Angry Prophet is Dying
by David France
Newsweek
11 Jun 2001


Larry Kramer is dying. Not wilting pitifully onto a milk-covered floor, like the doomed character in Kramer's devastating AIDS play "The Normal Heart." Not grandly bidding farewell to "all this beauty," as a character did in his outrageous novel "Faggots." Larry Kramer, the 65-year-old AIDS activist who became notorious for shouting on "Nightline" and being arrested at the White House, is dying the way he has always exhorted others to die--that is, furiously and uncooperatively.

He suffers from end-stage liver disease. Whether this is inflamed by his HIV medications, as Kramer believes, or caused solely by his chronic hepatitis (a common co-infection for people with the virus), as his medical team says, the result is the same: his liver no longer processes toxins from his blood. Instead they collect in his abdomen by the quart, distending his belly to make him look, as his best friend and health-care consultant Rodger McFarlane says, "pregnant with triplets." This accumulation puts immense pressure on the underside of his diaphragm, restricting his breathing to shallow gulps. Robbed of his appetite, he has lost a great deal of weight. Speaking is difficult. Words fall out in tremulous burps and hiccups, interrupted by trumpeted coughs that rocket off his spasming diaphragm and out of his mouth like shouts. Doctors regularly draw off fluids from Kramer's abdomen through long needles--10 liters at a time--but it comes back within weeks.

His prospects are certain and grim. "He's got 18 months or a year," says his infectious-disease specialist, Dr. Jeffrey Greene, "maybe less." Surprisingly, long-term survivors like Kramer, who contracted HIV 20 years ago, are again suffering the overall ravages of AIDS and related illnesses, some old and some new. Doctors now know that the triple-drug cocktails that lowered AIDS deaths by 65 percent are simply too toxic to be taken forever. Even those who can tolerate them find they can lose effectiveness over time.

Kramer takes only two medications, AZT and 3TC, though in doses designed for his hepatitis B more than his HIV. On the theory that he would wait until he got sicker, he never went on the protease inhibitors when they arrived with great fanfare in 1996. He has not suffered as a result: the amount of virus circulating in his blood has remained uncommonly low. Nevertheless, after an epic struggle to live, he is losing the battle.

What a reversal of fortune for the oldest living AIDS activist. From the first days of the epidemic in 1981, Kramer, a former movie executive, charged at the disease like a self-styled Patton. He founded ACT UP, perhaps the most innovative protest movement ever. Its members shut down Wall Street to protest drug costs; they pulled a huge condom over Jesse Helms's home in North Carolina to demand prevention funds; they staged die-ins and political funerals, carrying the bodies of their dead comrades to the gates of the White House in wide-open coffins, shocking the government to action.

Somehow through the din, Kramer made everybody who mattered listen, from The New York Times, whose early AIDS coverage was meager, to the Food and Drug Administration, the National Institutes of Health and successive White House tenants, whom he accused of "genocide." His wild blend of hyperbole, scalding honesty and messianic madmanism helped give the cause a sense of urgency and simple tragedy it might not have acquired without him. This was his goal, revealed from the stage of a gay rally in 1983: "We must do nothing less now than remake the soul of our time."

Along the way, his tolerance for dissent has been notoriously nonexistent. Once he even publicly branded his own lover a murderer because he was not fighting the scourge to Kramer's exact specifications. As a result, he is just as often viewed as a noxious force, "disruptive and accusatory and unforgiving, even egoistical," in the words of Arnie Kantrowitz, a longtime activist.

Today Larry Kramer talks with a hollow, fatalistic voice. "I think I've made good use of my talent and my energy and my anger, even though we haven't gotten anywhere near where I wanted us to get," he said one recent afternoon in his Fifth Avenue apartment. He was dressed as he always is these days, in overalls and a trove of Native American jewelry--arms heavy with turquoise bracelets, hands loaded with rings. His mood rallied and collapsed in quick cycles. "So now I have end-stage liver disease. If you were to ask me about the future, I would tell you that I am very despondent about it."

He spends his days completing a novel he began 20 years ago about the AIDS plague, "The American People," which Will Schwalbe, the editor in chief of Hyperion, calls "as groundbreaking in its own way as 'Moby Dick'." As the plague has not ended, there is no easy last chapter. Mostly, Kramer hunts for a liver-transplant program that will accept him. It is his only chance for survival. But it is not certain he will be cleared for being placed on the national transplant list--some argue that priority should be given to people with more promising prospects for a healthy life. "Don't count him out," says Dr. Anthony Fauci, who as the top AIDS researcher at the NIH earned Kramer's ire ("You monster," he once called him). Like Japanese and American generals after World War II, they have since become close friends. "He's a tough guy," Fauci says.

Leave it to Kramer to portend the next fork in the AIDS road. As AIDS has gone from a political crisis to a pharmaceutical one, Kramer's health has gone the other way. But once again, he is on a cutting edge. Just a few years ago there was hope that AIDS could be cured by aggressive deployment of the antiviral drugs. Not anymore. Now research indicates that a patient would have to take the current medications for 70 years to eradicate the virus. It is increasingly obvious that few patients will tolerate long drug exposures without suffering disabling bouts of diarrhea or nausea, osteoporosis, pitch-black depression, diabetes or crippling pain in their hands or feet. Doctors say serious drug side effects will hamper nearly all the 450,000 Americans on AIDS medications. Liver cirrhosis like Kramer's may soon become the leading cause of death for people with AIDS, experts say.

But the most common side effect, experienced by up to 80 percent of all people on the drugs, is also the most bizarre. The medications seem to cause an inexplicable loss of body fat from the face and extremities, accompanied by grotesquely large deposits of fat on stomachs and upper backs. It is not yet known how the condition--called lipo-dystrophy or "protease paunch"--taxes the health of patients. But it is instantly recognizable. City sidewalks were once haunted by the presence of fragile young men in wheelchairs; they now teem with this telltale sign of the plague. "It's such a paradox," says San Francisco surgeon Richard Glogau. "They get on the cocktails that restore them to some semblance of normal health, and about that time they begin to look more and more bizarre." In order to spare patients, in February doctors were told to withhold antiviral treatments for months or years after HIV infection, a turnabout from early guidelines.

For years Kramer's own side effects were minimal, and watching other people falter on protease inhibitors reinforced his decision to postpone taking them. "At every juncture I said, 'Why? Let's wait a little longer'," he says. But things changed very quickly once Kramer's liver failed and his hepatitis infection went into overdrive. In April he bequeathed his papers to Yale, securing his legacy. But until now, he has not revealed how near to death he really is.

The boundary between private suffering and public pronouncements has been fluid for Larry Kramer at least since his desperately unhappy freshman year at Yale, in 1953. He spent his first weeks confined to the school infirmary with a cough, attempting suicide a few months later in his dorm room. It wasn't until a professor seduced him the following spring that he realized the root of his misery: he was gay in an anti-gay world. Every drama he's written or fight he's picked since then, he has said, stems from a drive to understand the nature of, and obstacles to, love.

His first writing credit came as a movie-dialogue writer on a teen sex comedy called "Here We Go Round the Mulberry Bush," which he followed by penning an Oscar-nominated screenplay of D. H. Lawrence's novel "Women in Love," a film he also produced. He first infuriated the gay community with the 1978 publication of his debut novel, "Faggots," a broad condemnation of gay hedonism and promiscuity. Reviewers found it moralistic and way over the top, "a kind of National Lampoon Guide to Gays," said the Los Angeles Times. Kramer calls his novel a comic romp, but "personal rant" might be a truer explanation. It turns out that the man Kramer fell in love with after college--immortalized as Dinky Adams in "Faggots"--had rejected monogamy; "Faggots" was Kramer's plaint and revenge.

But fact caught up to fiction when news of the first cases of a rare pneumonia among gay men appeared three years later. Kramer saw an "I told you so" opportunity. He wrote his first AIDS polemic in August 1981, in the pages of the New York Native, then a prominent gay newspaper. Today 1 million Americans live with HIV. Some 36 million people worldwide are infected. But back then, his words could not have been more foreboding--prophetic, as they were, of the barreling epidemic:

"If I had written this a month ago, I would have used the figure '40.' If I had written this last week, I would have needed '80.' Today I must tell you that 120 gay men in the United States--most of them here in New York--are suffering from an often lethal form of cancer called Kaposi's sarcoma or from a virulent form of pneumonia that may be associated with it. More than thirty have died. By the time you read this, the necessary figures may be much higher."

From that moment forward, Kramer committed himself to the epidemic. He has authored three AIDS plays and countless essays, op-eds and polemical screeds, all filled with exclamation points and collected in his acclaimed book "Reports from the holocaust." At times when his invective proved less than effective, he helped build the bulwark against the disease. In 1982, he cofounded Gay Men's Health Crisis in New York , today the world's largest AIDS -service organization and a model for community-based agencies everywhere. But his fury and intolerance quickly alienated his fellow founders, who branded him a raging control freak and booted him out. Undaunted, he went on to launch ACT UP in 1987. Younger gay men and their allies saw in him a prophet and father figure. They joined ACT UP by the thousands in 100 chapters around the globe and mastered immunology, too often in a doomed reach to save their own lives. "There was unbelievable energy and camaraderie, this sense of community, and we were going to cure this--it was terribly, terribly exciting," Kramer remembers. "And it was sort of fun being, I don't know, daddy to it all."

As significant as ACT UP became, its birth was purely an accident of history. In March 1987, Kramer was asked to fill in at the last minute for novelist Nora Ephron, the planned speaker for a lecture series at the New York City Gay and Lesbian Community Center . He might have talked about anything. But he dashed out some notes about the lethargic pace of drug research, which by then had produced only AZT, an old cancer agent that had been around since the '60s. "A new drug can take 10 years to satisfy FDA approval. Ten years! Two thirds of us could be dead in less than five years," he shouted and cajoled. "I don't want to die. I cannot believe that you want to die. But what are we doing, really doing, to save our own lives?"

The audience leapt spontaneously to his challenge. On the spot they arranged a town meeting. Word of mouth brought 350 people two days later. The event was electrifying, one of those signal moments in the epidemic. Somebody proposed the name, an acronym for the AIDS Coalition to Unleash Power. "Drugs Into Bodies" was its unyielding demand.

Since then, ACT UP's impact has gone well beyond AIDS to change the way all pharmaceutical research is done. It used to take more than a decade for a promising drug to wend its way to approval; ACT UP demanded reforms, and now a pill can go from bench to bedside in under a year. All drugs used to be tested in placebo-control trials, meaning half of the patients were taking useless sugar tablets; ACT UP rejected this model outright as cruel in a fatal illness when experimental drugs are the only hope. Today exceptions are regularly made.

Kramer didn't learn of his own infection until 1988. He took his first AZT pills that fall, popping them in the bathroom of Barbra Streisand's Brentwood home, where he was working on a film adaptation of "The Normal Heart." But unlike many other ACT UP members, he did not offer up his body as a testing ground for every subsequent experimental compound. Many unpromising drugs came and went in the early years. There was HPA23, the drug Rock Hudson had flown to Paris to take, and AL721, a butter-based product developed by the prestigious Weizmann Institute in Israel which in the end did little more than make people fat. Kemron, manufactured by government laboratories in Kenya , grabbed attention in 1990 with the claim it was a breakthrough AIDS cure that was being suppressed by arrogant Western pharmaceutical forces; it proved to be a useless elixir, developed, it turns out, by veterinarians--in Amarillo , Texas . Many hopeless years unfolded thereafter, as the U.S. death toll rose to 250,000, then 300,000, then 350,000 and higher.

The disease never lost a skirmish until protease inhibitors arrived in 1996. It's nearly impossible to describe how remarkable a change has occurred since then. For the first time since 1981, AIDS was not a certain death sentence. ACT UP withered. Kramer went back to writing novels. He moved to Connecticut with his lover, the architect David Webster-- the very man whose jilting had caused Kramer to write "Faggots." "He'd grown up, I'd grown up," Webster explains. Kramer put it this way in an e-mail: "i's v. lucky to have found such a wonderful man at last." They've been together for 10 years.

But for Kramer, this idyll would not last. Though his HIV infection has remained manageable, about two years ago his hepatitis turned resistant to his medications; he now takes an experimental antiviral through an NIH trial. The fluid buildup became serious last fall. He has been looking for a liver since, a trying and lengthy process. For every available organ there are three people waiting. Yet there are very few programs willing to put people with AIDS on a transplant list. "It's a stigmata," says Dr. John Fung, chief of transplantation at the Thomas E. Starzl Transplantation Institute in Pittsburgh, which has done more HIV transplants--just nine in recent years--than any other facility in the world. "In the rationing process, the HIV patients are being relegated to the end of the line."

New York 's Mount Sinai Hospital rejected Kramer's application. In early May he traveled to Starzl for a weeklong battery of tests. "Your body is invaded in every which way," he told me by telephone from his hotel room. "It was awful." He is far from a shoo-in. "He's a higher-than-average-risk candidate," Fung told me between tests. "He has a blockage in one of the blood vessels that goes into the liver, which is a technical challenge. But we're still evaluating him."

Nervously, Kramer returned home to await the phone call that would bring approval or rejection. It is not an easy vigil. "Larry's frightened," Webster tells me. "He has been frightened a lot of the time in the epidemic; his fear promoted him to be angry. But this is really his first stage of really feeling that he could die. It's one thing to be talking about it. It's another to experience it. And watching so many other people get sick doesn't make it any easier for him."

Keeping his mind off matters, Kramer threw himself into the task of organizing his unfinished novel "so that something can be put out in case I die," he says. The pages spill out of boxes on his sofa, bookshelf, table and floor. A long-discarded cover sheet carries the subtitle "A History of the Plague Years." It is already 2,000 pages long. "Like everything I attempt," he says between coughs, "it's absurdly ambitious. But it's something I feel a personal responsibility to try and finish. I often wonder why I'm still alive. God knows everybody I know or was close to has died. And I sometimes wonder if I haven't been spared to complete this mission."

As he was discussing his book's progress one afternoon, the telephone rang and Kramer jumped to answer it. His voice rose in excitement. "June 15th? Oh, God, that's so great," he exclaimed. "Really? June 15th? Thank you, John. Thank you, thank you!" He hung up and was speechless for a moment, but I pressed him for details.

"Oh, no," he corrected with a giggle. "That wasn't the liver. That was tickets for 'The Producers'! I still have my priorities."

The good word did finally come one Wednesday morning a few weeks ago. Kramer has been accepted on the transplant list. To his surprise, Empire Blue Cross/Blue Shield and Medicare have approved payment, which can reach $275,000. If he survives the surgery, as most do, he will be given immune-suppressing medications to keep his body from rejecting the new tissue. This will cause his HIV to run rampant. So he will finally go on the drug cocktails he has so far avoided, hoping they will not let him down.

Now the grizzled doyen of activists sits home by the phone awaiting the call that his organ has been found. He prays it will come with enough time to spare. When it does, he knows what he'll throw in a bag on his way out the door--every piece of jewelry in his collection. "Oh, it's a joke, really," he told me. "When I was 22 and just came to New York , I went to a fortune-teller. And one of the things she told me was, 'Always wear something turquoise, it will protect you and bolster your health.' So I always have. And in a funny sort of way, I'm still here."

Maybe Larry Kramer isn't dying after all.


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