Left Field by Patricia Nell Warren
What’s at stake when media coverage misses the hard facts?
Wildly excited stories about “AIDS cures” are popping up all over the news. I was intrigued to see how many headlines appeared to reveal a shared bias. As NPR ombudsman Edward Schumacher-Matos has said, “Headlines are prominent and designed to capture your attention.” But some of these “cure” headlines seemed to go beyond that—to suggest that the “AIDS cure” was scientifically proven, when in fact, the following article discussed whether any conclusive proof has actually happened.
The crux of one story was earlier-than-usual ARV treatment, and whether or not the earlier treatment had fortuitously resulted in a “cure.” In the 3/15 Huffington Post, a headline announced breathlessly, “14 ADULTS ‘FUNCTIONALLY CURED’ OF HIV, STUDY SAYS.” The quotes around “functionally cured” could be interpreted as suggesting that the scientific paper on this study made that statement. But the paper being cited—published by its French researchers in PLOS Pathogens—did not actually describe those fourteen adults as “functionally cured.” The researchers used the word “remission” to describe the fourteen’s possible status. Lead scientist Asier Saez-Cirion emphasized this in an interview with the BBC News. He said, “They still have HIV, it is not eradication of HIV. It is a kind of remission of the infection.”
The PLOS Pathogens paper concluded on a cautious note, saying: “Our results show that early and prolonged ART may allow some individuals with a rather unfavorable background to achieve long-term infection control and may have important implications in the search for a functional HIV cure.” “May have” is far from a proven cure.
In her Huff Post article about the fourteen cases, author Amanda L. Chan went on to mention the now-famous case of the Mississippi baby girl, who was treated not only early but more aggressively than babies usually are. Chan stated flatly that the girl “was ‘functionally cured’ of HIV.” Yet, farther down in her article, she quoted Dr. Mark Siedner of Harvard Medical School, who had told the Wall Street Journal: “We know she was exposed to HIV, had HIV in her blood, and that at least some cells in her blood were found with sleeping virus—though we will likely never know if those cells were from the child or maternal cells that had been transmitted during pregnancy or birth. Was the baby infected with HIV and, thus, cured?…It seems more likely that her treatment prevented her, after exposure to HIV, from being infected.” In other words, Dr. Siedner is saying the baby girl may not be “cured.”
In the actual bodies of living things, remission and cure may have a shade of grey connecting them. But we humans also have to deal with words and definitions when we talk about these things. In Dorland’s Medical Dictionary for Health Consumers, one of the definitions of “cure” is: “successful treatment of a disease or a wound.” The American Heritage Medical Dictionary adds the following definition of cure: “Restoration of health; recovery from disease.” In short—if treatment is truly successful, and health is truly restored, then the disease or wound goes away and doesn’t come back.
Remission, however, is defined as: “a disappearance of a disease as a result of treatment. Complete remission means that all disease is gone. Partial remission means that the disease is significantly improved by treatment, but residual traces of the disease are still present.” Indeed, remission can end, with a deadly return of active disease. Many Americans are familiar with hearing about remission, especially in the case of leukemias, when the disease may temporarily respond to treatment and go inactive for a while, but then wakes up and progresses again.
Similar “cure” headlines popped up on Web sites of CNN, ABC News, Fox News, NPR, MSNBC—indicating a rare agreement among conservative and liberal news media about this one thing, namely the baby girl’s “cure.” CNN took the cake with its tabloidy headline: RESEARCHERS: TODDLER CURED OF HIV.
Some major print publications followed suit. In USA Today, the headline read, DOCTORS REPORT FIRST CURE OF HIV IN A CHILD. The article’s first sentence goes on to read, “For the first time, doctors are reporting that they have cured a child of HIV, the virus that causes AIDS.” However, deeper into the article, the paper covers its bases somewhat by admitting that what happened with her (whatever it was) may or may not benefit mothers and babies elsewhere. The doctor who treated the child, Hannah Gay, was quoted as saying, “I’m sort of holding my breath that this child’s virus doesn’t come back in the future.” If her virus comes back, it’s not a cure—it’s a remission coming to an end.
Even the Wall Street Journal went for a baldly affirmative headline: QUESTIONS AND ANSWERS ABOUT HIV CURE OF BABY. The phrase could be interpreted as saying that the cure is a fact, though there may be questions about it. Only in the body of the article did the WSJ delve into real issues, with some scientists saying that a lot of research has to be done before anybody knows anything for sure about such cases.
This explosion of “cure stories”—and the real-life distance between “cure” and “remission”—puts a glaring spotlight on how media, both major and independent, deal with AIDS news. Why is this important? Because these “cures” are alleged to be the result of ARV drugs already in the marketplace. These drugs are often expensive, and—far from curing—some have side effects that are toxic, even sometimes lethal, to individuals being treated. Yet already a new phalanx of studies is being discussed as a result of the fourteen story and the little-girl story—all of which will justify more research spending in a time when huge budget cuts have loomed over researchers. In addition, more mileage can be gotten out of existing drugs without start-from-scratch development.
Many decades ago, there was a time when the only way for medical research to move forward was via publication by peer-reviewed medical journals. Ethics were usually tight enough to keep everybody from rushing to judgment. But today, that is all changing. Some radical and mischievous new research, like that being done by skeptical Greek scientist Dr. John Ioannidis, has shown how uncomfortably unreliable the peer-reviewed system can be. Worse, rushing research to judgment in the pop news has become part of the way to get FDA approval.
With AIDS, that trend was already put in place in the 1980s, when the public was clamoring for the first treatment to be approved. Business Weekly senior writer Bruce Nussbaum noticed that a strategic use of media frenzies helped to get AZT into clinical trials and into the marketplace. He wrote about it in his revealing 1990 book Good Intentions, as he described how cancer researcher Sam Broder helped drag AZT off the bonepile where it had languished as a dud for cancer cures. Broder, said Nussbaum, was the first scientist to figure out “that AIDS would be the most politicized disease in the history of the United States, and that the press would play a key role.”
Today, what would the AIDS industry do without the press? They need the pop media as much as the science media. Pop can handily shop their message to the American populace, whether it’s getting them to accept the alleged value of male circumcision in prevention, or the importance of treating the poor in developing countries—even as treatment in the U.S. gets harder for the poor to access. And just on general principles, the public now and then needs to hear good news about “a cure for AIDS.”
Most Americans don’t read those peer-reviewed science journals. So even the most accurate of science reporting is lost on them. Most people get their information about medical advances from thirty-second bytes on TV or Internet news services or “shares” on Facebook. Indeed, with their ever-shorter attention span, most people will likely remember only the TODDLER CURED OF HIV headline. They won’t remember the rest of the article that hazarded any of the pesky questions. And that is surely what scientists, corporations, NGOs, and government agencies with a vested interest in “early-as-possible ARV treatment” are counting on—that the public will stand still for bigger AIDS research budgets.
Indeed, I wonder how many Congressmembers have those sunny “cure” headlines burned into their brains as they vote.
Huffington Post piece by Amanda L. Chan:
PLOS Pathogens article:
Copyright © 2013 by Patricia Nell Warren. All rights reserved.
Read the article in the April 2013 digital issue by clicking here.