THE END OF THE END?
AIDS; Words from the Front
By Celia Farber
Spin April 1997
The Mainstream media has all but declared the AIDS epidemic over. But some experts wonder whether the new "cocktail" therapy craze is bad science and wishful thinking.
The story has rippled through every major news media outlet since last fall: Prescription-drug "cocktails" are having such a dramatic impact on AIDS that the very nature of the disease is being reversed. People are now 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. Jornalist Bruce Mirken quoted an activist friend who 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?" Time named Dr. David Ho, the virologist who paved the way for the current drug revolution, as the Man of the Year.
Two articles in particular played major roles in launching the new optimism, because they were written by HIV-positive journalists who are themselves taking the drugs: Andrew Sullivan, former editor of the New Republic, wrote a lengthy personal 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 heading "Last Year, This Editor Wrote His Own Obituray."
Sullivan’s article triggered a firestorm of jubilation mixed with fury. The essay explored Sullivan’s own experience with AIDS – the deaths he witnessed, the fear he’s felt, the onslaught of grief that anybody involved in this epidemic goes trough – but the occasion of the article was the new pharmaceuticals. People are now taking a total of nine different drugs in any more than 100 combinations. Sullivan, despite all the qualifiers in his piece, is a believer. "The power of the newset 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."
Richard Berkowitz, a gay writer living in New York City who has been HIV-positive for more than a decade, descibed 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, who is skeptical about the new drugs, was 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 aviral plague been stopped by any therapy."
For his part, Sullivan feels his intended message was misconstrued. In an e-mail exchange with me, he wrote, "My Times piece was a first attempt to conceive of a world after AIDS. It was titled 'When Plagues End,' not 'The Plague Has Ended.' It also talked about the end of a 'plague,' not he 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."
All the stories - including Sullivan's - about the new drug combinations are laced with caveats: Some people "fail" on the drugs, and many can not 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. All the data on the new cocktails are drawn from small studies, conducted over period of weeks or, at most, months.
Yet Sullivan seems to believe that the resistance to imagining and end to AIDS is psychological, not scientific in nature. "I do think that Camus's 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 me. "I know of no other disease where patient activists are so keen to tell people to avoid treatment."
Historically, in fact, "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 is no consensus. For all the hype and excitement surrounding the new drugs, skeptical voices are heard all around. Both AIDS organizations and treatment activists have protested the hype emanating from the Vancouver AIDS conference last summer, 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 has expressed an "evangelical" zeal, in the Wall Street Journal's phrase, to get HlV-positive people on drug combinations as soon as possible. He has speculated that after two or three years of treatment, the virus might be eradicated and patients could go off the drugs.
There is no question that some people have rebounded from severe illness on the new drugs. But there is also no evidence that artificially lowering viral load by using drugs will improve health or lengthen life. "With sicker people, there's no question [that the new drugs work]. I've seen it myself," says Dr. Joseph Sonnabend, a cofounder of AmFAR. "But for healthy people? I have no idea whether it's going to hurt them or not, and yet they are being prescribed."
Meanwhile, the viral-load test has replaced the T-cell count as a barometer for illness. But is it a good one? As treatment activist Mike Barr recently reported in POZ magazine, the glossy AIDS monthly, 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. Some people have reached those levels on other drugs, like AZT and D4T, without getting any healthier.
The viral-load test iself is problematic. "I use this HIV viral-load test since it became available recently," says Dr. Donald Abrams, assistant director of the AIDS program at San Francisco General Hospital, "but I'm not convinced that I really, truly understand its correlation with clinical outcome." One Los Angeles company that sells viral-load tests offered them for $10 during a trial period, as opposed to the $200 to $300 they normally cost. Activist Christine Maggiore, president of HEAL (Los Angeles), who is HlV-positive, took the test. So did Rodney Knoll, a friend of hers who is HlV-negative. (You generally have to certify that you are HlV-positive in order to take the test.) Astonishingly, the test results showed that Knoll had a higher viral load than Maggiore did.
"No one has shown that the viral-load test measures infectious virus," says David Rasnick, a scientist who specializes in various protease inhibitors. "They can't measure the actual virus because they can't find it. So instead they amplify [fragments of] viral RNA, and assume that that is the same as virus. It is not. The difference between RNA and the virus itself is the difference between a blueprint and a house."
The new drugs can be enormously difficult to take, logistically, even for those who can tolerate them (and afford them). There is an almost Orwellian term for this problem - "patient compliance," meaning How can we get these people to do what we need them to? Patients take handfuls of pills that can make them feel awful day and night, rearrange their lives so their stomachs are empty or full when it's time to take this or that drug. Quality of life? The adverse effects of the drugs are so voluminous it's almost absurd: kidney stones, vomiting, seizures, neuropathy, gastrointestinal disorders, excessive bleeding in hemophiliacs. There are more than 100 side effects listed.
There have also been scattered reports of people "crashing" on the new drugs and dying suddenly from acute liver toxicity. Ritonavir, the most toxic of the three currently available protease inhibitors, appears to have been associated with these deaths. The drug's maker, Abbott, even sent a letter to healthcare providers, warning of reports of liver dysfunction, "including some fatalities." A spokesperson for Abbott acknowledged that deaths have been recorded, but said that a "definitive causal relationship" had not been confirmed.
"I've heard every version - people swearing by these drugs and people writhing on the floor in agony," says James Scutero, founder of the largest online AIDS discussion group. He adds that enthusiasm about the current batch of protease inhibitors has "already peaked."
AIDS is in a state of suspension. There are striking parallels between the current cocktail craze and the emergence of AZT in the fate '80s. "I suffer from historical perspective," says Abrams of San Francisco General, who rarely prescribes 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, editor-in-chief of POZ, is living proof that the new therapies work wonders for some people. "I probably would be dead if these drugs hadn't come along," he tells me over lunch. "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." Today, Strub looks a little thin but otherwise healthy and has no visible lesions.
But Strub still does not believe that asymptomatic people should take the new drugs. "I have so many friends who have waited - wisely so - with AZT. Those same cautious people are now going on cocktails. I try to stop them, but it's difficult." He can't help wondering if the parallels with AZT will 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 says. "Those of us who held out are alive."
Some AIDS researchers worry that the entire cocktail concept, and David Ho's underlying hypotheses about how HIV works, are based on sketchy research and unsupported data. "I'm totally ashamed of the profession," laments Sonnabend. "We have all these potent drugs but we don't know how to use them. If we were a sane society, we would find out. This is not evidence-based medicine. This is just a disgusting manipulation of people's fears and desperation, all for the sake of selling drugs." *