A New Perspective on Diagnoses & Treatment: Only Different in Degree

Writer and activist Richard Berkowitz described the streets of Greenwich Village on November 10, the day Sullivan’s article was published: “I went to a gay cinema, and almost everybody had a copy. Everyone was talking about it. People were calling their mothers, weeping. Seeing those words on the cover of the New York Times like that was almost Biblical. The desperation to believe it is so huge.”

Science reporter Jon Cohen was skeptical about the new drugs and one of the most prominent voices to assail Sullivan. In the online magazine Slate, Cohen insisted that only a vaccine could signal the end of AIDS: “Never in the annals of medicine has a viral plague been stopped by any therapy.”5

For his part, Sullivan felt his intended message was misconstrued. In an exchange with me, he wrote, “My Times piece was a first attempt to conceive of a world after AIDS. It was tided ‘When Plagues End,’ not ‘The Plague Has Ended.’ It also talked about the end of a ‘plague,’ not the end of a disease. ‘Plague’ I define as something unstoppable, out of our control completely, affecting everyone indiscriminately. That phase clearly has ended, and it raises a host of fascinating and difficult questions.”

The Philosophy of Patient Activism

All the stories about the new drug combinations—including Sullivan’s— were laced with caveats: Some people “fail” on the drugs, and many cannot afford them. But the core caveat is so monumental that it undermines the central premise. Time has not borne out whether the Lazarus effect of these new drugs will last. Rebounding from severe illness is one thing; “ending” AIDS is altogether another.

Yet Sullivan seemed to believe that the resistance to imagining an end to AIDS is psychological, not scientific, in nature. “I do think that Camus’ insight that at the end of plagues some people refuse to accept it because they have come to need the experience emotionally is a profound one,” he wrote to me. “I know of no other disease where patient activists are so keen to tell people to avoid treatment.”

Historically, however, “patient activism” in AIDS was built on a philosophy of “drugs into bodies,” meaning that people with HIV did not have time to wait and see whether drugs worked or not, but had to gamble. They did, and in the first round of gambling—with AZT—they undeniably lost. This time around there was no consensus.

For all the hype and excitement surrounding the new drugs, skeptical voices were heard early on. Both AIDS organizations and treatment activists protested the hype emanating from the Vancouver AIDS conference in 1996, which centered on Ho’s announcement that he had used drug combinations to bring several patients down to “undetectable” levels of HIV, as measured by a so-called “viral-load” test. Ho had expressed an “evangelical” zeal, as the Wall Street Journal put it, to get HIV-positive people on drug combinations as soon as possible.6 He speculated that after two or three years of treatment, the virus might be eradicated and patients could go off the drugs.