January #67 : Magical Mystery Cure - by Patrick Califia-Rice

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Table of Contents

Here Comes the Cure

Magical Mystery Cure

Cancer Rising

One To Watch: Frank Oldham

Opposite of Sex

Are the Kids Alright?

Paint by Numbers

Withdrawal Symptoms

Say What?

Safe-Surf Guidelines

The Down-Low Lowdown

You Can't Go Home Again

Teach Your Children Well

Personal Transformations

Lost in Disk Space

Buenas Noches

No Intermission

Tribute: Jacqueline M. Fuentes

Milestones

Cardio Calculus

Herb Of The Month: Green Tea

When Chemo Calls

BMS-232632

Kiss Lipo BUH-BYE?

Tonic for Two

Nukelier Fusion

Peppier Paps

Comfort Zone

On the Brink of Ink

Cyber Rx

Love's Labor

Heartbreak Hotel

Editor's Letter

Mailbox

01.01.93 Defining Moment

The Baby Blues



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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January 2001

Magical Mystery Cure

by Patrick Califia-Rice

For 20 years we have bled, sweat and wept for an end to AIDS. Patrick Califia-Rice asks what we talk about when we talk about a cure.

In the mid-'70s, my friends were a bunch of 'hos who took their pay in cum rather than cash. On a first-name basis with the receptionist at San Francisco's VD clinic, every burn, bump, sore or drip of the week got a cursory examination from a bored doctor. A big shot of antibiotics or a jar full of pills later, and my buds were off to the tubs. Whenever I questioned the wisdom of this, I got my nose slapped. "I've got the clap in my dick," Sal said pointedly. "It shouldn't be a problem if I just get fucked."

In that (in retrospect) reckless time, gay men (and almost everybody else, for that matter) were blasé about sexually transmitted diseases. The assumption was that every infection could be cured, easily and instantaneously. Joey came down with herpes. When his doc told him there was no treatment and he'd have to abstain from sex during outbreaks, he refused to believe it. He got two more medical opinions before he realized this was the cold Victorian truth, then lapsed into a deep depression and dropped out of sight.

Robert had to endure more than one lengthy, painful treatment for anal warts. When I suggested asking his studs to use condoms, he grimaced, saying, "If I have to bag my meat, I might as well be straight. You know, if they really wanted to make this go away, they could. They just hate fags." While AIDS has proved in spades that morality influences the priorities of medical research and public health policies, even then it struck me as odd that he believed using a rubber would feel worse than getting acid poured into his tush. If they hate us, I recall thinking, shouldn't we work even harder to take care of ourselves and one another?

Even cautious I've-only-had-200-sex-partners me was completely unprepared in the early '80s for the novelty of a germ that entered our bodies, sabotaged our immune systems and let death in. But once my friends and I got that HIV did this, we were scared shitless -- and pissed off.

At first, even daring to demand that indifferent medical and political systems expend resources on disarming the mysterious new retrovirus was controversial. When activists like author Larry Kramer persisted in screaming that it was possible to cure AIDS if only everyone worked harder and acted up more, they were mocked for their presumption. But demand we did, proving in the process that, as Kramer put it, "a bunch of fags and junkies, niggers and spics" were worth the effort. And although our demand was phrased in medical terms, what we needed was more than physical reparation. We wanted nothing less than a communal cleansing, a political panacea, a spiritual casting out. We had fallen hard and fast from a place of freedom and hope back to '50s-style homo self-hatred. Now we wanted the pill that would rid us of this unwanted guest responsible for so much grief, stigma and pain.

The making -- and breaking -- of the promise of a cure began early, with the 1984 prediction by Reagan health commissioner Margaret Heckler that a vaccine for the newly discovered virus would be ready in two years -- something no right-minded researcher believed. The late '80s witnessed not only the demo of the week but the cure du jour (see "Care for a Cure?"). HIV positive performance artist Ron Athey recalls, "There were so many headline-grabbing bogus cures that I found it emotionally safer to deal with the fact that there was never going to be a cure." As our desire battled with our doubt, the cure remained tantalizingly elusive -- and everywhere. The cure materialized in the New Ager ritual of keeping a blue light on outside the house "until...." It was mobilized for fundraising in "Until There's a Cure" bracelets at Macy's and Bloomingdale's. It was pressed into service by AIDS service organizations nationwide for the "Be Here for the Cure" prevention campaign encouraging positive gay men to stay healthy and negative ones to stay safe. These notions all seemed rather campy even at the time, and I recall wondering about the wisdom of asking sick people to wait for a salvation that might never come. For by then AZT had shattered the illusion of a cure for many of us. Approved by the FDA in 1987, the blue-and-white capsules were hawked by Sam Broder, MD, with the same inflated hopes later pinned on HAART -- complete eradication of the virus. It was horrible to see friends feel better for a few months only to slide back into pain and panic. Nevertheless, many of us bit like wide-mouthed basses in 1996 when David Ho, MD, predicted that protease cocktails would perform the same miracle.

The more science learns about how HIV integrates itself into our very DNA, the more of a pipedream a silver bullet for AIDS seems. In fact, there's a growing consensus among researchers that given HIV's damnable genius to mutate and resist new drugs, some sort of compromise or co-existence between the virus and the immune system is as close to a cure as we will ever get (see "Here Comes the Cure"). "The notion of eradication as a cure should be redefined because it was always a ridiculous science fiction," says veteran community doc Joseph Sonnabend, MD. "Reaching a situation where there is an immune containment of HIV, as with the herpes virus -- that would constitute a cure, for all practical purposes." But Sonnabend waves this red flag: "Right now such a proposal is entirely theoretical, and to dangle it as a real hope in front of people who are sick would be as terribly cruel and unwise as what Broder and Ho did."

Newsday's Pulitzer Prize-winning AIDS reporter Laurie Garrett disagrees. Her definition of a cure is the same in 2001 as it was 20 years ago. "A cure would constitute complete elimination of all vestiges of HIV, as well as its potentially activatable genetic material, from the body, without killing or causing undue harm." When asked if it was still worthwhile to hold out for this goal, she says, "Somebody should."

Still, there's no longer a consensus that more movement or money will hurry a cure along -- despite what Kramer and other self-proclaimed "crazies" say. One gay friend asks, "Will taking to the streets with signs jog some scientist's brain?" Writer Simon Shepherd says, "HIV research is a gruelingly slow, incremental process. It's hard to maintain a white-hot anger around, say, the difficulties of finding drugs that cross the blood-brain barrier."

Activists are not only discouraged by the unknowns of immunology and the malicious mysteries of retroviruses. They are also burdened by the broader picture of how health issues are neglected worldwide. "Right now, an AIDS cure is not a priority for HIV positive residents of the wealthy world who can afford long-term retrovirals, though it remains the top issue among the poor," Garrett says. "We have reached a point where the needs of the wealthy few in this global pandemic have superceded those of the vast majority. It's a sorry state of affairs."

One thing that has not changed since the founding of ACT UP in 1987 is our mistrust of pharmaceutical corporations and government health agencies. As Garrett pithily puts it, "The $20,000-per-year-for-life model of HIV treatment offers significantly greater profit potential than would a short-course cure or treatment."

An equally deep suspicion is that moralism would outweigh even the profit motive in the cure R&D. "I'm guessing a large part of the population feels like AIDS should be kept around, so that sex still has some dire consequences," says Fergus Poole, a young HIV negative gay man who came out deep into the safe-sex age. Ending AIDS is not just about keeping semen out of assholes and cunts. Over the long stretch, it forces us to address the sexual hypocrisy that, for example, allows a vast prostitution industry to flourish alongside ostensibly monogamous marriage and to break the link between desire and punishment.

While improvements in antiretrovirals will certainly prolong lives, they cannot free PWAs from the constant awareness of being seriously ill. Doug Harrison, an HIV positive engineer and author of gay erotica, says, "People are having second thoughts about AIDS as a chronic, manageable illness due to reinfection and drug side effects. Manageable has turned out to be an elusive goal." Longtime survivor and Stop AIDS Project health educator Paul Miller says, "What one person may see as manageable another may view as a living hell."

As HIVers running out of options continue to hope against hope for a cure, they are increasingly isolated by the trend toward ending AIDS by focusing on prevention. The idea that there would surely be a cure, and soon, was vital to many gay men's determination to use condoms in the first place -- a necessary but temporary evil in a time of crisis. "A condom every time" was a popular piece of grassroots propaganda, cheerful self-denial intended to thwart the enemy, like World War II Americans donating their pots and pans to forge bullets against Hitler.

Many HIV positive safe-sex educators speak of prevention work as "healing" in itself. Notions of a chemical or genetic eraser for HIV have been overshadowed by a lay ministry of secular preachers who gently but persistently remind us that we can't avoid the consequences of our pleasure-seeking behavior. But if one generation of gay men managed to sacrifice an unprecedented level of profligate carnality, the next is waxing rebellious at being asked to forgo libertinage altogether. Unprotected sex is, after all, a reliable way to get pleasure instead of pain out of being queer.

Disillusionment about the advent of a cure has bred some very ugly hostility toward the newly infected. "People confused cure with prevention and came to believe that if we could just get everyone to practice safer sex, then the disease would end," says Alex Garner, a former prevention educator who tested positive five years ago. "This created a way of thinking that made people who had unsafe sex out as villains of the community." I am stunned at how many of the activists, health educators and HIVers I spoke with for this article expressed blame and shame at anyone who seroconverted in the last 10 years. "There was a time when we didn't know how AIDS was transmitted," a queer erotic art photographer who requested anonymity says. "But now there is little excuse for getting it. AIDS is preventable."

Some even finger HIV positive gay men themselves for killing the hope of a cure by creating the so-called supervirus -- despite the fact that science knows very little about the existence of such mutant-monster strains. Founding member of the Sisters of Perpetual Indulgence Jack Fertig, who is HIV positive, says that if the "supervirus" becomes a public health threat, "the entire argument will be different because this time we knew better. And when they say we brought this on ourselves, what will be our answer?"

The single biggest factor contributing to drug-resistant HIV is not barebackers but the drugs. And researchers don't lie awake at night sweating over a superstrain of HIV. We have some personal responsibility for this, but few among us are qualified to cast the first stone. We've all stayed overnight in the glass house of high-risk sex. Newsday's Garrett is appropriately scathing about the "use a condom every time or go to hell" mentality. "Public health measures are very hard to maintain over the long haul," she says. "Latex sex for life? I don't think many gay activists who accepted the condom barrier in the early '80s imagined that they were buying into a lifestyle change for the rest of their lives. I know smokers who have been treated for lung cancer and still smoke. My God, that's easy compared to sex."

Our prevention paradigm is in desperate need of revision -- something on the order of Sonnabend's post-eradication "cure." Most risk reduction is based on the assumption that sexual behavior is learned, so dangerous behavior can be reprogrammed as safety. But human sexual behavior may be as hard-wired as that of any other mammal. In order to stop HIV, we may need to study our pleasure-seeking drives in as much detail as our immune cells.

The ultimate form of prevention would, of course, be a vaccine. But many HIVers such as Stop AIDS's Miller cast a wary eye on the prospect. "There are definitely concerns that a vaccine will be developed and people who are already HIV positive will be left to fend for themselves," he says. The very real fear that the quest for a vaccine will take priority over a cure springs out of the deep divisions between the HIV positive and HIV negative. Antibody apartheid has existed ever since the first blood test was available. Back in the days when we were all presumably using condoms and waiting for a cure, there was no official discussion of this split, but plenty of pain. Given human frailty, the main difference between being positive and negative is finally just luck -- not guilt or innocence. The current hatred expressed by and for barebackers is a kind of do-it-yourself queer-bashing.

The epidemic has cast such a long shadow that there is a sense in which that old slogan, "We are all living with AIDS," remains as true today as it was a decade ago. HIV positive or negative, each of us is looking for a cure of our own. Some of us want a high-tech magic bullet to purge us of the virus. Some also yearn for a sense of spiritual renewal, a cure for our fear of mortality. Some would be content to simply live longer lives. Many wish to return to the values about sex and relationships that prevailed in the "good, old days" before a virus made promiscuity dangerous. Others believe the epidemic has mandated a transformation in sexual ethics, in which we take up stewardship of one another's health. Some hope that the larger society can be cured of its insanity about sexual desire, pleasure in general, skin color, even money.

If we could vaccinate ourselves against indifference, apathy, prejudice and denial, much of the harm done by this virus could be at least made more bearable. But it seems fair to ask whether a cure for shame or self-hatred is truly as important as finding less toxic medications. Lofty political hopes and spiritual speculation are difficult to sustain when I have to visit the hospital and hold the hand of one more person who is breathing through a tube and may not even know I am there. Our bodies, our precious lives, still cry out to be saved.




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