A 20-Year Toll

We'd been seeing patients with fevers and weight loss, and by the spring they'd developed an unusual pneumonia. All were homosexual. A colleague and I wrote an article. Then other doctors started calling. They had cases, too.

When it appeared in children and transfusion recipients, that was a turning point in public perception. Up until then it was entirely a gay epidemic. Now everyone could relate. Suddenly TV crews wanted interviews. I thought: "Where had these people been for the last year?"

It seemed obvious this was a transmissable disease that spread through exchanges of bodily fluid. But condoms weren't popular--these were very liberated sexual times.

One night a guy showed up at our house who said he had the cure for AIDS in an old Johnson's shampoo bottle. Ryan said: "I ain't taking that"... Was I tempted? I was more tempted by the things I was hearing in the media about new drugs... Ryan said, "Mom, they're working so hard, by the time I get really sick there will be a cure."

Friends started calling me. "Don't go near this one, Elizabeth. It's not a sympathetic charity." Then a couple of months before the dinner it came out that Rock [Hudson] had AIDS. All of a sudden the city did a total spin. It was like, "Oh, one of us got it, it's not just bums in the gutter."

I was only able to speak with President Reagan alone about AIDS once. We were walking down a hall. Suddenly the Secret Service grabbed us and threw us in a broom closet because of a bomb scare. I was looking at him eyeball to eyeball. I said: "I have to tell you about AIDS. It's a disease we have to face. The people around you continue to think that people who have AIDS deserve what they got. But we're fighting a disease, not the people who have it." Then the Secret Service pulled us out before he said anything.

Patients had to meet strict entry criteria to get the drug. I had a patient, one of my absolute favorites, who fit most of the criteria. It was tempting to cheat, just to get him on the study. But I didn't want to risk corrupting the trial. He died within a year and a half.

Alison had gotten sick that summer, and they tested her for everything: lymphoma, Hodgkin's, you name it. But they never tested her for AIDS because nobody thought a heterosexual woman who's not a drug user would get it. We subsequently learned that she'd gotten it from a good friend, who she'd only slept with once.

At 9:15 that morning we stood with the smokers outside the Exchange and, using fake security badges, we just filed in past the guards. We marched up to the balcony, handcuffed ourselves to it and unfurled a banner that said sell wellcome, referring to Glaxo Wellcome. Three days later, they lowered the price by 20 percent.

Kimberly had a molar extracted in 1987, and she started with fevers, weakness and rashes. They never suggested an HIV test because there was no reason to suspect it. When she was diagnosed in 1989, we were in disbelief. We knew our dentist had been sick, that he was gay. Health officials said no way, it just can't happen. But Kimberly stuck by her guns.

For the press conference we brought in an AIDS specialist to answer reporters' questions. We had a meeting with her before the announcement. That's where we found out that Magic didn't have AIDS, and that he has the HIV virus. None of us knew there was a difference.

I don't know what kind of reception my speech received. It was like an out-of-body experience. People told me afterwards that the room got completely silent while I spoke, which is unheard of at a convention. Afterwards President Bush said I'd done a wonderful thing.

We were sitting at a podium and we were told Arthur Ashe wouldn't be there because he wasn't feeling well, but that he'd sent a videotaped message. While it played a man walked onstage to talk to Mary Fisher. It looked like she was going to collapse. Then they announced that Arthur Ashe had just died.

We talked to Pedro about the stress of being on the show, and how it might not be good for his health. He was emphatic--he said he was going to be an activist whether he was on the show or not. He died the night the last episode aired. For many viewers, Pedro was the first person with AIDS they knew.

The previous fall I'd collapsed and almost died. Then my doctor was able to get me into a trial of the protease inhibitors. It's seven years later and I'm still alive and kicking. I take 71 pills a day that cost $36,000 a year, and my urine is pure gold from all the chemicals.

I was at a meeting of activists in New York, where David Ho described how people who'd had millions of copies of HIV in their blood now had zero. I just remember thinking, "This period of complete helplessness is over."

By the mid-'90s there was a shift in public perception, that AIDS and HIV were becoming less of a crisis. Thanks to these wonderful new medications, you were no longer seeing people looking sick. That's a wonderful benefit, but as AIDS faded from view, charities saw declines in donations.

To test a vaccine, we'd immunize a chimpanzee, then hit the immunized chimpanzee and a second, unimmunized chimpanzee with the live HIV virus. Then we'd test them both, hoping the vaccine had protected the immunized chimpanzee. This had failed 16 times. Then finally one worked.

Fear of death is a very powerful motivator, and it's not at all surprising that when people are no longer looking at certain death from HIV, their views about unsafe sex are going to change.

September 2000
Researcher Bette Korber presents the latest findings on the origins of HIV:

We have many blood samples containing HIV from the last 20 years, but we also have one from the Congo in 1959. Working with mathematicians and physicists, we developed evolutionary models that suggest the version of HIV that caused the epidemic originated around 1930. Our modeling suggests it didn't start spreading like wildfire for many years.