A New Perspective on Diagnoses & Treatment: Only Different in Degree
Celia Farber, who was an intrepid young reporter in the 1980’s, was the first journalist to question the official narrative and dig into the science of AIDS. She reported on the “evidence” that was being continually cited and repeated by health officials and the press, the deadliness of AZT, and more. Throughout, Farber’s reportage was largely ignored. Now, forty years after her original reporting, Farber’s Serious Adverse Events: An Uncensored History of AIDS is reissued. In the excerpt below, Farber recalls a change in perspective surrounding prescription medication as a treatment for AIDS.
The following is an excerpt from Serious Adverse Events: An Uncensored History of AIDS by Celia Farber. It has been adapted for the web.
A New Type of Treatment: Emerging Optimism
The story first rippled through every news media outlet in the fall of 1996: Prescription-drug “cocktails” were having such a dramatic impact on AIDS that the very nature of the disease was being reversed.1 People were springing back from their deathbeds, worried now not about dying but about living—about credit card balances and career prospects and life insurance policies already sold.
Having spent all those years preparing to die, some people found the idea of living almost unsettling. One activist dubbed this new journalistic phenomenon “I’m-Gonna-Live-and-I-Have-Nothing-to-Wear.” Newsweek’s cover asked whether this was “The End of AIDS?”2 Time named Dr. David Ho, the virologist who paved the way for the current drug “cocktail” revolution, as the Man of the Year for 1996.3
Two articles in particular played major roles in launching this new optimism, because they were written by HIV-positive journalists who were themselves taking the drugs: Andrew Sullivan, former editor of the New Republic, wrote a lengthy personal cover essay for the New York Times Magazine entitled “When Plagues End—Notes on the Twilight of an Epidemic”; and David Sanford of the Wall Street Journal penned a front-page article titled “Last Year, This Editor Wrote His Own Obituary.”4
The Dissection of Diagnoses: “Only Different in Degree”
Sullivan’s article was met with great jubilation, as well as fury. Sullivan explored his own experience with AIDS—the deaths he witnessed, the fear he’s felt, the onslaught of grief that anybody involved in this epidemic goes through—but the occasion of the article was the new pharmaceuticals. People were taking an array of different drugs in more than 100 combinations. Sullivan, despite all the qualifiers in his piece, was a believer.
“The power of the newest drugs, called protease inhibitors,” he wrote, “and the even greater power of those in the pipeline, is such that a diagnosis of HIV infection is not just different in degree today than, say, five years ago. It is different in kind. It no longer signifies death. It merely signifies illness.” He went on to write: “I realized that my diagnosis was no different in kind than the diagnosis every mortal being lives with—only different in degree. By larger and larger measures, I began to see the condition not as something constricting, but as something liberating . . . liberating because an awareness of the inevitability of death is always the surest way to an awareness of the tangibility of life.”
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.
Entering A State of Suspension
Meanwhile, the viral-load test replaced the T-cell count as a barometer for illness. But as treatment activist Mike Barr reported in POZ magazine early in the cocktail craze, an “undetectable” viral load merely means a number below an arbitrary cut-off point of 400 to 500 copies of HIV RNA per milliliter of blood.7 Some people have reached those levels on other drugs, like AZT and D4T, without getting any healthier.
In other words, the viral-load test was problematic and was considered so from the beginning. “I used this HIV viral-load test since it became available,” Dr. Donald Abrams, assistant director of the AIDS program at San Francisco General Hospital, said in 1997, “but I’m not convinced that I really, truly understand its cor- relation with clinical outcome.” One Los Angeles company sold viral-load tests for $10 during a trial period to induce sales; at the time the test sold for $200 to $300.
“I’ve heard every version—people swearing by these drugs and people writhing on the floor in agony,” noted the late James Scutero, who founded the once popular mischealthaids.org discussion group.
Indeed, AIDS seemed in a state of suspension, for there were striking parallels between the cocktail craze and the emergence of AZT in the late ’80s. “I suffer from historical perspective,” noted Abrams, who rarely prescribed the new drugs. “I remember 1987, when AZT first became available. I was not convinced that it was the be-all and end-all. That stance was very unpopular, and then over the course of ten years more and more people started to come around.”
Sean Strub, chairman and founder of POZ, is living proof that the new therapies work wonders for some. “I probably would be dead if these drugs hadn’t come along,” he told me over lunch in 1997. “A year and a half ago, I had Kaposi’s sarcoma in my lungs and was taking chemotherapy every two weeks. I had lesions all over my face. Then I started combinations and within weeks it turned me around.”
But Strub did not believe in 1997 that asymptomatic people should take the new drugs. “I have so many friends who waited—wisely so—with AZT. Those same cautious people are now going on cocktails. I try to stop them, but it’s difficult.” At the same time, he couldn’t help wondering if the parallels with AZT would be played out to a tragic conclusion. “My friends who were diagnosed at the same time I was, and who went on AZT, are virtually all dead today,” he said. “Those of us who held out are alive.”
Notes
1. Liz Hunt, “‘Cocktail’ Opens New Chapter on AIDS,” Independent, July 12, 1996, https:// www.independent.co.uk/news/cocktail-opens-new-chapter-on-aids-1328432.html; Elizabeth Kastor, “The New Miracle AIDS Drugs: A Dose of Hope and Hard Reality,” Washington Post, September 5, 1996, https://www.washingtonpost.com/archive /politics/1996/09/05/the-new-miracle-aids-drugs-a-dose-of-hope-and-hard-reality /166f7848-4924-4624-ad2c-113ef638ce5b/.
2. “The End of Aids?,” Newsweek, December 1, 1996, https://www.newsweek.com /end-aids-175200.
3. Lily Rothman, “Until 2014, This Man Was TIME’s Only Medical Person of the Year,” Time, December 10, 2014, https://time.com/3627996/david-ho-person-of-the-year/.
4. Andrew Sullivan, “When Plagues End,” New York Times Magazine, November 10, 1996, https://www.nytimes.com/1996/11/10/magazine/when-plagues-end.html; David Sanford, “Last Year, This Editor Wrote His Own Obituary,” Wall Street Journal, November 8, 1996, https://www.wsj.com/articles/SB847406633862990500.
5. Jon Cohen, “AIDS Isn’t Over,” Slate, November 23, 1996, https://slate.com/news-and -politics/1996/11/aids-isn-t-over.html.
6. Michael Waldholz, “Dr. Ho Wants to Test ‘Cure,’ But Others Are Critical,” Wall Street Journal, December 17, 1996, https://www.wsj.com/articles/SB850772872678442500.
7. Mike Barr, “God Is Dead: The Dream of HIV Eradication Ends,” POZ, March 1, 1998, https://www.poz.com/article/hiv-eradication-dream-12518-6283.
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