STORIES

Feeding Frenzy

In the natural world, it’s called a “feeding frenzy” when wolves or sharks descend on a quarry with mindless, ravenous abandon.  In the information age, I’ve seen a similar sort of frenzy in pursuit of headline news. A Twitter mob formed on-line in the wake of the 2013 Boston Marathon bombing, naming as suspects people who were totally innocent. As the Vancouver conference neared, journalists arrived in droves to cover the triple-drug therapy breakthrough. They came armed with preconceptions and superlatives, while the scientists and activists and drug companies came armed with their own, often deeply personal angles on the story. The emotion of the time fairly crackled in news reports.  POZ magazine reported:

By the International AIDS Conference in July, the elation had reached such a frenzied pitch that longtime AZT investigator Dr. Paul Volberding was ambushed by a camera-and-microphone-wielding throng while checking into his Vancouver hotel. “Would you characterize the tone of this meeting as ‘euphoric’?” one reporter asked—even before the convention had officially started. Volberding demurred.

Amid the rush to declare victory, responsible scientists tried to strike a balance that reflected reality: We had new tools to prolong lives but we had no cure.

On July 10, reporter Elizabeth Farnsworth of the “PBS Newshour” interviewed two distinguished conference participants: Dr. Helene Gayle, the CDC’s director of HIV prevention, and Dr. Roy “Trip” Gulick, a clinician and researcher at the New York University School of Medicine and a valued colleague of mine. In this exchange, Trip reflected the cautious optimism many of us felt.

FARNSWORTH: So, Dr. Gulick, is it too early to say that AIDS is no longer an incurable, inevitably fatal disease?

GULICK: Well, I think that what we've shown is using combinations of drugs which can actually lower the virus to very low or undetectable levels for periods as long as months, that what we're really saying is that that's an important first step toward making HIV a chronic, treatable illness. I think it would be misleading to say that we have the answer. Certainly I would not use the word cure to describe these therapies, but we're making a positive step in the long-term treatment of this disease.

While PBS was interviewing Trip Gulick, I was preparing to be on a panel discussing the new antiretroviral therapies. The panel was organized by my old friend Donna Jacobsen, president and Executive Director of the International AIDS Society-USA. My panel mates were top-notch researchers and clinicians including Margaret Fischl, Paul Volberding, and Doug Richman whose laboratory was among the first to identify HIV drug resistance. Because we were going to address the clinical basics of using these new drugs—when to start therapy, what to start with, when to change therapy and what to change to—the symposium drew a big, curious crowd. Doug was at the podium, partway through his presentation on primary infection, when the doors of the venue were slammed open and the circus began.

I’ve seen videotapes of the event, but they don’t really capture the scene as I felt it, chaotic and alarming and ridiculous all at once. Twenty young men bursting into the ballroom, shouting unintelligibly. Running down the aisles, mounting the stage, slinging containers of red liquid so it sprayed across us panelists. They doused us with fake blood, they later said, to make their point that if the researchers themselves were infected with the AIDS virus, that might spur more urgency and progress in fighting it.

Some of us sat there startled; others retreated from the dais as the protesters charged. They jumped on the dais, raised their arms in power salutes, and their shouts became rhythmic chants: “Toxic chemotherapy! Ban AZT! Toxic chemotherapy! Ban AZT!”

The conference center security personnel, showing a restraint I’ve long associated with Canadians, didn’t apply any muscle. But they did step in to position themselves between us and the demonstrators, who variously shouted at us, grabbed for our microphones, knocked papers and water off the dais and pumped their fists in the air. Our audience of colleagues began its own roaring chant toward the unwanted protesters, “Get out! Get out! Get out!”

As a panel of MDs, we knew immediately that we hadn’t been showered with actual blood. Upon further inspection, we concluded it was probably beet juice. Margaret was among the worst hit, vegetable gore splashed on her eyeglass frames, her cheek, her blouse. I remember mentally cursing these clowns for ruining one of my favorite jackets, the one I had worn to my son Andy’s bar mitzvah. Somebody passed us a couple of tablecloths and we tried to mop up the area and ourselves.

After a few minutes, apparently satisfied that they had made their point, the protesters walked off stage with a security escort to a chorus of boos and shouts of “Shame!” A representative of ACT-UP’s New York chapter came to the podium to apologize. He said the protesters were members of ACT UP San Francisco, the rogue band that had split from the official group, “and we disown them. We never disrupt information, ever.” Years later, Donna Jacobsen still was struck by “how very different this was from any other ‘activist’ activity. Rather than a demonstration or protest about the lack of progress, it was an attack on the dissemination of information. It was just unconscionable.”

A meeting organizer appeared with enough white VANCOUVER 1996 conference t-shirts for all the panelists. We took off the most soiled of our clothes, put the t-shirts on, and went back to our seats at the dais. I’ll always remember Doug Richman retaking the podium, straightening the microphone and delivering the deadpan line, “Now, where was I before I was so rudely interrupted?” I still have my printed program from the symposium with its juice-stained cover.

 

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