Two of the nation’s premier news organizations recently published stories about AIDS that lit a powerful candle, bringing light and hope into what has been a very dark place. Within three days of each other—on Nov. 8 and 10, respectively—the Wall Street Journal and the New York Times Magazine each published first-person essays by HIV-infected gay men that brimmed with optimism.
The Journal’s Page One story by one of its Page One editors, David Sanford, chronicled his odyssey from the brink of immune-system collapse to his current state of paunchy wellness, courtesy of a new regimen of protease inhibitors. Former New Republic Editor Andrew Sullivan’s cover piece in the Times Magazine was a political and spiritual treatise on what happens “when AIDS ends.” Although they wrote very different pieces, Sanford and Sullivan merged on one critical point: AIDS is finally on the run. The stories were lovely to behold. Would that they were true.
Early in his story, Sullivan does the responsible thing, pointing out that the vast majority of people who have AIDS or HIV cannot afford protease inhibitors, and acknowledging the paucity of evidence that science is finally trumping the virus. But he breaks out of his cautionary gait, writing, “The power of the newest drugs, called protease inhibitors, and the even greater power of those now 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.”
Sanford’s Journal piece is even less restrained. “I’ve outlived friends and peers, and now I find myself in the unusual position of telling people how I’ve survived this scourge, something I never thought would happen. My condition could change for the worse tomorrow. But today I feel well again.”
Two major pieces on vanquishing AIDS coming so closely together mark a change in the way the disease is being discussed. And just as the public developed a new and deeper understanding of the pandemic when important people started dying or coming out as positive, Sullivan and Sanford’s stories will no doubt bring a measure of assurance to the rest of us. But it may be fleeting.
The cover for Sullivan’s beautifully rendered piece featured a lift from the text of the story in type that goes from sickly to elegant as your eyes drop down the page. “A difference between the end of AIDS and the end of the many other plagues: for the first time in history, a large proportion of the survivors will not simply be those who escaped infection, or were immune to the virus, but those who contracted the illness, contemplated their own deaths and still survived.” The headline comes quietly at the end: “When AIDS Ends.”
Sullivan must have drawn tremendous satisfaction from penning an obit for a disease that has wiped out so many people he loves, but AIDS has shown a mutational resilience that suggests that it is premature to finally dance, however tastefully, among the graves. Like all plagues, AIDS will eventually slither back where it came from, but people who spend their days treating and tracking the disease say it has a ways to go.
“If you talked to the researchers who are doing the work on these drugs, most of them believe that these patients will not be cured. I don’t think there is any evidence that we have gone beyond that,” says Spencer Cox, director of the Antivirals Project for the Treatment Action Group, a major AIDS advocacy organization based in New York.
Still, Sanford and Sullivan clearly believe that they have dodged a bullet and that science has spawned something that allows them to shoot back. While Sullivan doesn’t spill his vital signs in newsprint, Sanford’s story includes a quarter-page graphic depicting his T-cell count, which has bounced back over the critical 200 mark since he started taking protease inhibitors along with other powerful antiviral medications. His viral load—a crucial indicator of disease progression—has dropped sharply in the past few months.
“Thanks to the arrival of the new drugs called protease inhibitors, I am probably more likely to be hit by a truck than to die of AIDS,” Sanford wrote.
“There must be some pretty bad truck traffic in his neighborhood,” says Carlton Hogan, a training director at the Coordinating Center for Biometric Research at the University of Minnesota. Hogan has been tracking AIDS treatment regimens for six years, but his interest in protease inhibitors is more than professional. Hogan has had a T-cell count in the neighborhood of 50 for some time and recently began a regimen of protease inhibitors.
“I would love to believe that what they are saying is true, but in the one pivotal trial that people cite [among people with highly compromised immune systems], about half as many people died as might be expected. Now, that’s very encouraging, but no matter how you slice it, that’s an alarming death rate,” Hogan says. “The trial certainly shows that the drug does something, but it doesn’t sound like the end of AIDS to me. I’m glad that they are having these epiphanies, but I don’t think it’s based on enough science,” Hogan says.
The stories bring to mind the fanfare of trumpets that accompanied AZT back in 1987, the last “miracle” in AIDS treatment. Desperate AIDS victims and pharmaceutical companies relentlessly fanned the hype and spoke of putting the acronym AIDS in the past tense. But widespread use flushed out AZT for what it was: an effective, if punishing, tool in slowing the progress of a chronic and usually fatal disease.
“I don’t fault them for telling their stories; that is certainly legitimate,” says Cox. “But this all sounds a lot like back when they did the first study of AZT. They studied the drug for six months, and people taking the placebo were 19 times more likely to die than people taking AZT. There was dancing in the streets as I remember it, but as time wore on, it became clear that people on AZT were still dying, and at the doses we were using at the time, the drug was incredibly toxic.”
“There was a huge letdown and an even bigger backlash. I am afraid we are doing the same thing all over again…that we are overselling what these drugs can do and setting ourselves up for the same kind of backlash,” Cox suggests.
Cox and Hogan agree that it isn’t just patients who fall victim to the happy talk. “There are enormous marketing pressures to downplay the risks of these drugs from the drug companies. And the researchers are all desperate for some good news, and this is a genuine breakthrough,” says Hogan.
Because the protease cocktails are being pressed into service hastily, there is a dearth of data about when patients should begin taking them, what combinations are most effective, and most importantly, what the long-term consequences of the regimen are. And though they have proved effective in reducing viral loads, nothing in the data suggests that they are any more a cure than their pharmaceutical precursors.
In the margins of both pieces lies an issue even more delicate than the authors’ illnesses. As Sanford points out, the Centers for Disease Control and Prevention estimates that some 900,000 people in the U.S. are infected and only 100,000 are taking protease inhibitors. Part of the problem with the pieces by Sullivan and Sanford is that they are not a good measure of the reality that most seropositive people are living. Sullivan and Sanford are rich, powerful men with big-league connections. In a weird arc across the stories, Sanford mentioned that Martin Peretz of the New Republic, Sullivan’s old boss, introduced him to Dr. Jerry Groopman, Harvard professor and chief of experimental medicine at Beth Israel Deaconess Medical Center. Although Sullivan doesn’t go into details, he reportedly shares the same doctor, which puts them both in the vanguard of AIDS treatment.
Dr. Peter Hawley, medical director of the Whitman-Walker Clinic, says the talk of a miracle drug has some of his patients feeling mighty left out.
“Their stories are very misleading to all of the people who can’t afford the drugs. Right now, there is a freeze on HIV assistance money in the District, and they are not taking any new people for these drugs. The people who are getting them are people who have very good insurance or have money of their own. We have patients who are asking us all of the time whether they can get on these drugs, and until the HIV assistance program begins taking all comers, we can’t help them. It’s very frustrating for them and for us,” says Hawley.
Hawley worries that Sanford and Sullivan’s optimistic pieces will hurt AIDS awareness in the long run.
“I get the feeling when I read these stories that people are pausing in their battle, but I’m hopeful that they will get re-energized to make sure that these advantages are more universally enjoyed. At least in the beginning of his article, Andrew points out that not everybody is participating, but [that message] sort of gets diluted out after you read the whole article,” Hawley says.
In the District, gay white males with the wherewithal to follow complicated treatment regimens are no longer the big local AIDS story. Today, the city’s biggest at-risk population is poor, black, and often homeless.
“There is some question whether it’s ethical to prescribe these drugs for homeless people because they require a level of compliance that’s very difficult to achieve even if you aren’t on the street,” Cox points out. If a person is noncompliant, he runs the risk of allowing the virus to mutate—which raises the specter of a virus loose in the street population that is resistant to protease inhibitors. Transmission of AZT-resistant strains of the virus is a scientific fact. “All it takes is some people who don’t follow through, who are sexually promiscuous, and suddenly there is a virus out there that is already protease-resistant,” adds Hogan.
“I think that what Sullivan is doing is very parallel to what a number or researchers have been doing. They won’t come out and say that they have a cure, but they are certainly suggesting it between the lines. And they are all doing it for the same reason….We are all very desperate for some good news,” says Hogan.
Sanford’s Journal diary was a jarring departure for the nation’s daily business paper. Even a few years ago, who would have predicted that the Journal would use its front page to showcase a first-person piece in which a Journal editor admits he may have been infected during anonymous sex at a bathhouse in the East Village? The publication of his story clearly demonstrates AIDS’s transformational power in contemporary culture. It’s too bad that in deciding to publish the story, the Journal didn’t hold it to the same standards of fact and precision that most every other story in the paper meets.
Sullivan’s story is much more difficult to fault, in part because he does a good job of anticipating his critics. And from a literary standpoint, Sullivan’s story is a sprawling, majestic thing to behold. He manages to weave a thread through the Holocaust, circuit parties, AIDS conferences, and personal anecdotage to elegantly demonstrate how AIDS engendered mainstream acceptance of homosexuality and forced gay men to go beyond self-seeking. It would have been a tremendous read with less dramatic packaging—the pages were stamped with a little tombstone at the top that read “After AIDS”—but the Times Magazine was clearly interested in putting its readers on notice that this was not just another AIDS story.
Even those who find fault with the message are thrilled by what is happening to the health of the messengers. Hope is such a precious commodity in the AIDS community that most people will take it any way it comes.
“I’ll be very frank. I know a lot of upper-middle-class gay males that I very much want to live, and if I can see them cured and no one else right now, I will take that and then keep working on everybody else,” says Cox. “I don’t think anybody is of the mind that we shouldn’t take the cure until there is a cure for everybody.”