Scenes from an Epidemic


June 5, 1981

The federal Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Reportspublishes the first report of a curious disease outbreak. Titled simply " Pneumocystis Pneumonia--Los Angeles," the report describes five cases of pneumonia caused by a usually harmless organism, pneumocystis carinii , in "five young men, all active homosexuals." Two of the five are already dead.

The report goes on to explain that " pneumocystis pneumonia in the United States is almost exclusively limited to severely immuno-compromised patients," and that its occurrence in five previously healthy young men with no known immune deficiency is "unusual." Three of the men did have evidence of "abnormal cellular immune function," but the reason is a mystery.

The New York Times runs a small story. But even as more reports trickle in over the summer and fall, the rest of the media take no notice.

Neither do I. I'm living in L.A., pursuing an acting career and waiting on tables to pay the bills--between relationships but otherwise quite happy with my life.

White House Press Briefing, Oct. 15, 1982

Question to President Reagan Spokesman Larry Speakes: "Does the President have any reaction to the announcement--from the Centers for Disease Control in Atlanta--that AIDS is now an epidemic and has over 600 cases?"

Speakes: "What's AIDS?"

January 1983

I don't remember when I first heard about AIDS. But I vividly remember being pulled aside one night by my coworker Tina--40ish, thoroughly heterosexual and motherly, with the faintest trace of a cockney accent. "Please be careful," she says quietly. "I saw this thing on TV last night about this new disease that's going around in the gay community. This poor guy--he didn't even look human."

I have no clue how I answered, but I'd heard of it--and still wasn't worried.

About a year later I had the strangest phone conversation with my father. A retired MD, dad cared deeply about his kids but in a quiet, emotionally reserved sort of way. He told me about an article in the latest Newsweek , some sort of retrospective about the Vietnam War, and went out of his way to urge me to read it. There was something just a little off about the whole conversation--I can't remember another time in my life when he called me just to tell me to read an article.

A few days later a large envelope arrived in the mail--from dad. No note, just the issue of Newsweek he'd mentioned. A few pages past the Vietnam story he'd told me about was a large article about AIDS.

"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, 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." --Larry Kramer, "1,112 and Counting," March 1983

"In the end, how you have sex is a matter of personal choice. But in the age of AIDS, it is important to realize that each one of us is now betting his life on what changes we do or do not make." --Michael Callen and Richard Berkowitz, "How to Have Sex in an Epidemic, One Approach," May, 1983

Recommendations For People With AIDS


1) Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2) Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.

3) Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge. --from "The Denver Principles," report from the Advisory Committee of People With AIDS, 1983


Conspiracy of silence
The enemy within
Complacency and arrogance make us think we cannot win
Make us think the battle has been won
But the thunder in the distance says its only just begun
They try to break our spirits
Try to keep us in our place
They do it to the women and the poor of every race
We face a common enemy:
Bigotry and greed
But if we fight together we can find the strength we need
--Michael Callen, "Living in Wartime," 1987

April 10, 1988

I am at UCLA's Pauley Pavilion, where I've dragged my parents to see a display of the Names Project AIDS Quilt. It is a sad, strange, stirring spectacle, these little patches of lost lives spread out on a gymnasium floor. I am so absorbed I barely notice the voice of the woman at the podium, reciting the names of the dead--until she speaks the one name I can't bear to hear.

John Upchurch was my first real boyfriend. I was a senior in college; he was a freshman at a nearby school--sweet, shy, with sandy hair and an adorable smile. But John was still finding his way out of the closet, confused and unsure of his sexuality, and being in a relationship with another male was more than he could handle. One night after we'd made love he told me he had to go, that there were things he needed to think about. I never heard from him again.

I was upset, but I wasn't angry. I knew the struggle he was going through. I just wanted to give him a hug and tell him it would be okay.

Now, precisely a decade later, some stranger's voice is telling me he's gone. I find my way to a corner of the room, sit down and begin sobbing, my body shaking and tears pouring down my face like they haven't done since I was 10. My mother comes over and asks what is wrong, but I can't tell her. I can't stop crying long enough to speak.

Could I possibly have heard wrong? Could it be that someone else with the same name had died ? I have to know. I call the college John attended and they offer to forward a letter to his family. I immediately write an awkward, uncomfortable letter to complete strangers, not knowing whom it will reach or if the person I'm asking about is alive or dead.

About 10 days later I get back a gentle note from John's father, telling me his late son was "the bravest man I ever knew" and enclosing the program from his memorial service. John had become the lover of Jim Corti, one of the pioneers of the AIDS drug underground of the mid-'80s that smuggled unapproved treatments across the border when U.S. doctors had literally nothing to offer their dying patients. John had helped.

He was a hero. He had lived only a few miles from me. And I never knew.

All I wanted to do was give him a hug.

"People just can't imagine the scope of devastation. If you haven't fought in a war, I don't think there's anything comparable for people in their 20s and 30s to see half the people they know die...

"In 10 years there will still be an AIDS epidemic. People will be living longer from the disease but people will be dying from it. It will affect more segments of the country, particularly urban black and Latino poor people, but it will affect the gay male community disproportionately.

"I'll be dead in 10 years. I can't keep raising myself false hope that it's going to become a chronic, manageable disease in my lifetime." --Mark Kostopoulos, co-founder, ACT UP/Los Angeles, interviewed about the first 10 years of AIDS and what the next 10 might bring, June, 1991

Mark Kostopoulos--who, as a government employee on disability, had excellent health insurance--never stopped fighting for health care for all. He orchestrated the campaign that finally got an AIDS ward at L.A.'s overcrowded, desperately underfunded County/USC General Hospital. Even as he became more ill and visibly gaunt, he wasn't afraid of marching in the rain and cold or being manhandled by the police.

He never gave up. Two days before his death he was watching the news in his hospital room and plotting political strategy.

By accident I was the one who drove him to that last hospitalization. It was supposed to be just a doctor's appointment, but he was painfully weak and clearly in pain, and his doctor told him to get to the hospital immediately. As we pulled up to the entrance I offered to go in with him, but he would have none of it. As sick as he was, he insisted on walking in by himself, without assistance, and I knew I had to let him make this small gesture of independence. I watched with a knot in my stomach as he moved slowly toward the door.

That was the last time I saw him, and it was a fitting final image: stubborn, proud, defiant as hell. Mark Kostopoulos died June 20, 1992.

"Greed equals death! Access for all!" --ACT UP chant at the 11th International AIDS Conference, Vancouver, July, 1996

The 11th International AIDS Conference was even more surreal than most of these gatherings. With new drug combinations dramatically improving the health of many who tried them, the pharmaceutical industry PR machine was in full swing. Elaborate drug company pavilions staffed by earnest young men in nice suits decorated with obligatory red ribbons hawked the latest drug information. Drug company­sponsored "satellite sessions" featured scientific speakers and lavish buffets, even as activists fretted about who would pay for these pricey new drugs--and who would be left to do without.

San Francisco physician Mary Romeyn put it best: "You know, I have a problem with ice sculptures when my patients can't afford the treatments they need."

Buried in the protease avalanche were bits of worrisome news. The search for an HIV vaccine was floundering. UC San Francisco researcher Dr. Peter Lurie estimated that 10,000 Americans had become needlessly infected because the federal government refused to fund needle-exchange programs, but the Clinton administration remained paralyzed.

"We're supposed to have leaders," Lurie said, his voice oozing scorn. "I've been told by federal officials, 'Oh, we don't have consensus on this.' What the fuck is that supposed to mean?"

December 30, 1996

At a White House press conference called to give the Clinton administration's official response to Proposition 215, California's medical marijuana initiative, Health and Human Services Secretary Donna Shalala solemnly warns, "All available research concludes that marijuana is dangerous to our health."

Actually, just a year earlier the prestigious British medical journal The Lancet had editorialized, "The smoking of cannabis, even long-term, is not harmful to health." The medical literature does not document even one fatal marijuana overdose--making it, by one obvious measure, a far safer drug than aspirin. What was it that Dr. Lurie had said again? Oh yeah, we're supposed to have leaders.

Four and a half years later the federal government would still be opposing medical marijuana measures now passed by nine states while continuing its refusal to fund needle exchange.

"Industry can, and sometimes does, mount aggressive, targeted vaccine research programs. But companies exist to make money, not to make the world a better place, and the AIDS vaccine equation, especially given the scientific unknowns and the liability issues, has yet to attract much interest from the major pharmaceutical houses." --Jon Cohen, "Shots in the Dark: The Wayward Search for an AIDS Vaccine," 2001

January 2001

New estimates from the San Francisco Department of Public Health suggest HIV infections are rising. Similar reports come from several other cities, including New York and Seattle. The details vary but the pattern is depressingly similar: More risky sex, more STDs, higher rates of seroconversion. A couple of reports feature particularly scary numbers for black gay men.

Andrew Sullivan, in a January 29 screed on his Web site, disses the San Francisco report. Sullivan, who had written confidently in December 1996 (a year in which 37,787 Americans died of AIDS) that HIV "no longer signifies death. It merely signifies illness," writes that he is "unconvinced" by the new estimate.

"We still don't know how to fix our broken immune systems." 
--Survive AIDS member Jeff Getty, 2001