Sunday, June 05, 2011

June 5, 1981

They were young. The oldest was 36; the youngest, 29.

On the day the bombshell exploded, two of the five were already dead. The others would be dead very soon after.

June 5, 1981. That was the day the Centers for Disease Control and Prevention (CDC) published a report on a rare and deadly illness affecting five young, gay men in Los Angeles.

It would be more than a year before the condition got its official name, but that was the day that Acquired Immune Deficiency Syndrome, or AIDS, was officially recognized in the U.S.

Within days of publication, CDC was flooded with reports of similar cases. The wildfire was already out of control.

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The young gay men had migrated to San Francisco and New York and Los Angeles to find others like themselves, and they had created communities where they were not the outcasts of society. They had built safe havens where they could live and love and walk down the street without getting their heads bashed in. In a world that vilified their very existence, they had proudly embraced their sexuality—flipping an audacious middle finger to middle American morals.

But now—once again—there were no safe places.

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Thirty years later, it can be hard to remember the fear and the desperation of those early days. It took more than three years to figure out what caused AIDS and to develop a test to detect HIV, the virus that causes it.

But what good is a test for a virus that can’t be treated? The medical profession stood by in bewilderment as doctors exhausted their arsenals of drugs and procedures—and nothing stopped the onslaught of death.

They were young—and they died like flies. Tens…and then hundreds…and then thousands of them.

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There were multiple ways to die of AIDS and they were all ugly. Until 1981, the only people who got the bizarre diseases that came with AIDS were whose immune systems had been destroyed by treatment for cancer.

But now the dying patients came in ever-increasing waves. Young men who had once been healthy and beautiful—who had reveled in their attractiveness and physicality as a way of healing themselves from the deep psychological and spiritual wounds that the culture had inflicted on them—were now gaunt and desperate.

They were defenseless against the unrelenting onslaught of opportunistic infections that were the hallmark of AIDS. That astonishing array of illnesses both debilitated and demoralized them.

There was pneumocystis carinii pneumonia (PCP), which killed almost 80% of AIDS patients in the early days.

There was candidiasis, or thrush, which filled their mouths and throats with so much yeast that they could barely talk, eat, or breathe.

Then there was Kaposi’s Sarcoma (KS), an aggressive form of viral cancer that overran their internal organs and disfigured their beautiful, young faces. In the first years of the epidemic, PCP may have killed more people, but KS became the defining mark of those with AIDS.

KS was the 20th century mark of Cain….imposed not for murder, but for love—or something close to it.

Then there were cytomegalovirus and toxoplasmosis and cryptosporidiosis and a host of other hard-to-pronounce and hard-to-spell illnesses that had the infectious disease specialists scratching their heads in confusion.

Nothing worked. For the first five years of the epidemic, the average survival time after diagnosis was less than a year.

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And then there were the other “side effects” of AIDS. People lost their jobs, their families and friends, and their homes when they got sick. Schools refused to admit HIV-positive students. Doctors wouldn’t treat HIV-positive patients, and healthcare workers refused to touch them. Churches and funeral homes refused to bury those who died.

They were young…and so many of them died alone and abandoned by those who should have been the first to help.

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We forget these things now. We forget that we—all of us who were on the outside looking in—made the horror and agony immeasurably worse. We treated them all—the gay men, the drug addicts, the sex workers—like lepers, and we told them that they deserved what they got for daring to be gay or addicted or abused or poor.

We even held the so-called “innocent victims”—the hemophiliacs, the babies, the blood-transfusion recipients, and the female partners of HIV-positive men—at arm’s length. Under the guise of concern, we wanted to know all about how they “got it,” to assure ourselves that we were safe.

Some of us went so far as to call for quarantining or tattooing people with AIDS. And someone in Florida went a step farther and burned down the home of three little boys who had hemophilia, AIDS—and the gall to want to attend school.

We would like to forget these things. We would like to believe that we were better, kinder, more compassionate.

We were not.

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The drugs ended much of the terror and despair—but the medications that would change everything were 15 years away from June 5, 1981.

The advent of the drug zidovudine (AZT) in 1987 would save lives, but AZT alone could only slow--not stop--HIV's ability to take over and destroy the immune system. It would take the appearance of combination antiretroviral drugs (ARVs) in 1996 to bank the wildfire.

By the time ARVs became available, over 500,000 Americans had AIDS—and 62% of them were dead. Almost 70% of those who died were under the age of 49.

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On June 5, 2011, I am 47.

They were so young…



Doxy’s Note:This post is for Mark, Tim, Lee (who is one of the big reasons I am an Episcopalian, even though I never met him), and Bill—all of whom died of AIDS. For Phillip, whose love for me set me on the path to what has turned out to be my vocation, and for Buck, whose courage and honesty has changed my life in ways he will never fully know. But—most of all—for Miguel, whose unswerving commitment to ending the scourge of HIV/AIDS inspires me every day, and who gave me the chance to spend my life working on something that matters so much to me. Thank you….

For more information on the history of the AIDS epidemic, visit the AIDS.gov timeline or the "30 Years of AIDS" page.