Snowball in a Blizzard

by Steven Hatch

  The scourge marched on.

  Yet December 15, 2010, was a very different day for anyone outside the world of HIV. People casually paying attention to the news that day would have heard a report of something almost astonishing from the scientific community: the complete eradication of the AIDS virus in a patient. “German doctors declare ‘cure’ in HIV patient,” read the Reuters headline, and within twenty-four hours the world media began trumpeting the story. The major television networks devoted several minutes of airtime to announce the news with great fanfare. Tens of thousands of people read the article and shared it online. Doctors’ offices were flooded with calls. Had you not read the news story at the time, this may come as a surprise to you because you’ve probably heard nothing about it since—and a cure for HIV seems like the kind of thing you’d continue to hear about.

  The reason you haven’t heard any follow-up is because there was one small problem: it wasn’t really true.

  Now, the facts of the story were correct: there was a patient who did have HIV and subsequently had all traces of the virus eliminated from his body. However, the virus was eradicated due to a bizarre twist of cell biology and transplant medicine; the truth of the matter was that one patient became improbably, almost impossibly, lucky. More than 70 million people have been infected with HIV since the epidemic began, while no more than maybe a half dozen have managed to clear the HIV virus from their bodies. Of these incredibly rare cases, so far as we know only one adult—Timothy Ray Brown, who became known as the “Berlin patient”—has been cured of HIV.* Moreover, his cure came at a very high cost and could have killed him. But this crucial background information played a negligible part in the news stories pinging around the electronic ether in late November and early December of that year.

  Mr. Brown is actually the second person dubbed “the Berlin patient,” the first being a man who became able to “control” his HIV infection (meaning the virus replicated at only very low levels) after experimental therapy he received in Germany in the late 1990s, although this was not technically a cure. This anonymous patient likewise became the object of media interest, although the increase in popularity of the Internet has made the second Berlin patient much more famous. Nothing is simple in medicine.

  The health news of December 15, 2010, probably shouldn’t have mentioned this item at all, but if it did, organizations might have included a blurb on their websites with the title “One Person in 70 Million Cured.” But that is hardly news at all. For this story to have legs, the title had to be “Cure!” With that headline, the viewers and their online readers came by the millions. And, unless they were approaching such a story with skepticism, they would have come away with almost the opposite understanding of the reality of HIV in the early twenty-first century. First, they would have thought a cure was a realistic possibility for those people living with HIV, which it wasn’t. Second, they would have walked away unaware that we already have the functional equivalent of a cure for HIV, and that most HIV-infected people can now live basically normal lives and can expect to see old age like anyone else. We call this functional cure “pills.” That story, however, isn’t very sexy and didn’t happen all at once, so it never got sent to health reporters as a press release from some pharmaceutical company or university seeking publicity.

  The story of the Berlin patient is emblematic of the professional news media’s all-too-frequent obsession with glitzy but largely vapid headlines. It demonstrates a key feature of health news: namely, that stories can often burst with facts, but, much like our American diet, such facts serve as sugary calories for the brain to gorge upon but lack the context to serve as genuine intellectual nutrition. Thus, we tend to know more but understand less; we drown in news bytes rather than swim in knowledge. The effect is corrosive because, by making a fetish of technology, it undermines popular confidence in medicine when that technology can’t deliver. By focusing on the space-age wizardry, it makes some of the genuinely amazing things that modern medicine can do seem dull by comparison.

  Recall our seven words of advice for maintaining good health from the introduction: exercise more, eat less, and do not smoke. If one lives by those tenets, the likelihood of long life is by no means guaranteed, but faithful adherence to those precepts is more important than anything else in health, by far. Yet, by watching the health news, it’s actually pretty difficult to appreciate this message in its glorious simplicity. You are much more likely to become preoccupied with trivial threats to your health, underappreciate the enormous impact that smoking can have on your quality of life, and become fascinated by scientific developments that appear to be just around the corner from the marketplace but in reality have little chance of ever finding their way to hospitals or clinics. Much of this misperception will be caused by the fact that health reporters ignore uncertainty like the proverbial elephant in the newsroom. To discuss uncertainty requires nuance, and a nuanced presentation needs time and makes demands on news consumers. In the news organizations with the largest audiences, health reporters aren’t really interested in making any demands on their audience if the bulk of their stories are to be judged, and they don’t like devoting more than a minute or two to a story. It’s the intellectual equivalent of eating Wonder Bread as one’s only source of food.

  By “health news” I mean something very particular. A generation ago, when one spoke of media, it was much clearer what one was referring to: the local paper or TV station, the national networks, and the news weeklies were all good examples, and readers could figure out which of these was being discussed by context. In the age of the Internet and hundred-channel cable television, however, “media” and “news” could refer to any number of wildly different organizations, ranging from simple online equivalents of the daily newspapers that struggle to stay afloat in the current marketplace to websites with editorial views well outside the mainstream. We consume news today in a very different way than our parents did, with many more opportunities for finding alternative viewpoints and unusual perspectives.

  Yet, despite this evolution of a new media bazaar, where one can shop for all manner of stories, local TV “health watch” stories retain a powerful grip on how people perceive modern health care and the developments going on in medical research. Likewise, national TV health news and the website news stories produced by those networks are still a principal route for many people to learn about what’s going on in the world of medicine. They still command a level of trust across a broad swath of the nation; their stories get “shared” on Facebook and passed on in e-mails between friends. These organizations were the outlets that ran with the story of the Berlin patient, that became titillated by the promise of the HIV cure, that excitedly chirped about this “development” without attaching the caveats so necessary to understanding the true meaning of the story.* It is these media groups that utilize television, and to a smaller but ever-increasing extent the Internet, as their principal means to reach consumers on which I will focus my attention in this chapter, and it is the main group to which I refer when I say “media.”

  I note that the New York Times never ran a story on the Berlin patient of 2010 (they did actually feature a longer piece on the first Berlin patient more than ten years before). They briefly included a link to a Reuters new piece reporting the HIV cure, but within a day the link had vanished. Apparently some health editor at the NYT understood this development for the nonstory that it was: an item of scientific curiosity for physicians and scientists who study and treat HIV, but one that didn’t translate to anything useful for the public to know. One day I would like to meet that editor and hug them.

  Before I proceed with itemizing some of the methods by which the media fails to incorporate uncertainty, let me explain the story of the Berlin patient. The physiology of it is quite remarkable, and Brown’s team in Germany performed a very nifty scientific trick for which they deserve only praise. But, in addition to the science, I also want to describe the medicine of Brown’s cure. Tha
t was hardly commented on during the media deluge of late 2010, and it’s just as important as the science to understand his medical odyssey.

  Like all viruses, HIV needs to enter human cells, where it uses the cell’s machinery to produce many copies of itself and thus spread to another host. Each virus is specific for the kind of cell it will infect: hepatitis viruses infect liver cells, the rabies virus infects neurons, and so on. The HIV virus infects a special kind of immune cell known as the CD4 cell. The CD4 cell can be thought of as a “central commander” for the immune system; without it to send signals to other cells, the overall organization of the immune system collapses to a great extent. People who die from AIDS don’t die from the direct effects of the virus, but rather from the infections that result from a nonfunctional immune system.

  The molecular biology of how and why these viruses are matched with specific cells is complicated, but one essential point is that cells are coated with large molecules known as receptors, and different cells have different receptors based on their function as well as their need to communicate with other cells by sending and receiving molecular messages that utilize these receptors. The surfaces of viruses are likewise coated with proteins matching these cell-specific receptors. Think of it as a lock-and-key way of gaining entry inside a cell: if you want to communicate with a particular cell, you must have the key to gain access. Through evolution, viruses have “stolen” a key to gain entry to cells.

  In the case of HIV, two keys to two different cell receptors are required for entrance: the CD4 protein itself and a second protein known as CCR5. It turns out that a very small number of people have a mutation in their DNA that changes the shape of the CCR5 protein. Thus, the lock no longer fits the key held by HIV, and HIV cannot enter CD4 cells, so these people are immune to HIV infection. Therefore, if HIV-infected people could have all of their infected CD4 cells removed and be replaced by CD4 cells with the mutation that prevents infection, they could in theory become virus-free altogether.

  Normally, this opportunity doesn’t present itself. The only way to remove someone’s CD4 cells and replace them with a different set is by doing a bone marrow transplant. In the case of Timothy Ray Brown, he had developed leukemia, the treatment for which is a bone marrow transplant. His doctors in Germany thought that he would be an ideal person to test the theory that infusing someone with another’s immune system containing HIV-resistant CD4 cells might result in a cure, not only for the leukemia but for the HIV as well. Thus far, they have been right, and Mr. Brown has shown no traces of the virus following his successful transplant.

  It’s a pretty amazing story, and the biology used to make it happen is awe inspiring. For Mr. Brown, it has unquestionably been a life-altering event. But there are some details about the process that make its relevance highly unlikely for almost all other HIV-infected patients. These details were almost completely ignored in the tempest that accompanied the publicity surrounding his cure.

  First, a bone marrow transplant is a very risky procedure with a high mortality rate. The survival data for these kinds of procedures vary based on the age of the patient, the type of disease being treated, how closely genetically related the donor is, as well as other factors, but a reasonable estimate is that a patient has a 15–30 percent chance of dying within the first year of a bone marrow transplant. The only reason we resort to such a brutal procedure is because the alternative—chemotherapy, usually, or perhaps holy water—is much less successful. These transplants typically require weeks of hospitalization during which the patient becomes extremely ill while the new immune system orients itself.

  Second, even if one survives, a bone marrow transplant almost always comes with some kind of treatment complication. Among the most feared is something known as the “graft versus host disease,” where the transplanted immune system “sees” its new home as a completely foreign landscape, in effect assuming that it is surrounded by infectious organisms, and therefore reacts by mounting a massive inflammatory response. People suffering from graft versus host can develop skin rashes, mouth ulcers, severe abdominal pain, and liver failure. To counter this, patients must take immune suppressants, which have their own side effects often as unpleasant as graft versus host disease. Some patients do well, but it’s by no means a guarantee.

  Third, even if a bone marrow transplant were a simple matter, there really are very few people in the world who have this genetic mutation to serve as donors for HIV patients. Northern Europeans appear to have the mutation in greatest proportion, but even then it’s only about 10 percent of that population. Fewer still have the mutations in both genes (one mutation from the mother’s chromosome and one from the father’s), and this small group constitutes the only people who can be acceptable donors for this attempted cure.

  If an HIV patient was willing to run the gauntlet of a bone marrow transplant, and happened to be lucky enough to find a more-or-less genetically matched donor who had the mutation preventing HIV attachment through the CCR5 receptor, it still might not be enough to be cured of the infection. Some strains of HIV don’t even use the CCR5 receptor but gain entry using a different surface molecule, which means that patients might have their HIV come roaring back even if all the technical and medical obstacles were easily surmountable. Amazingly, Brown carried both types of virus. In theory, the second type of virus should have been able to start a new chain of reinfection, but, for reasons poorly understood, it didn’t. Unfortunately, that’s no guarantee that it wouldn’t happen to the next person.

  Thus, in short, Timothy Ray Brown was a medical arrow hitting a bull’s eye shot by doctors hundreds of meters from the target in the midst of a windstorm. He was amazingly lucky. It’s not likely to work for more than a few people in the coming decade or two; in the meantime, there are 30 million people infected, some of whom weren’t given this additional explanation when the story came to light. If they feel cheated, they have a right to.

  The Medical Manufactroversy

  The story of Timothy Ray Brown’s HIV cure highlights the problems that arise when the media uses one person’s story to exemplify a much larger medical issue. The enormous publicity over his medical odyssey illustrates how medicine can become oversold, where the story of the one (he was cured) fails to stand in for the many (there is no cure for HIV right now). It doesn’t have to be this way, of course, as there are millions of people living with HIV whose stories could represent the current reality of the disease—a reality that is a complicated amalgam of tremendous scientific achievement and the daily grind of dealing with taking meds and living with their side effects. When Timothy Ray Brown was morphed into The Berlin Patient by starry-eyed reporters, the media made medicine look too good as part of its insatiable need for eye-grabbing headlines. Reporters wanted to pretend uncertainty was utterly absent in his story—of course he was going to want this treatment; wouldn’t everyone? Why, what could possibly be the downsides?

  This is what an acknowledgment of uncertainty brings: that there might in fact be legitimate downsides, and that a happy outcome is in doubt. Such information might have allowed consumers of the story of The Berlin Patient to navigate themselves to a different place on the spectrum of certainty—that is, closer to the middle—than where the reporters wanted to believe it to be.

  That same principle can be applied by the media to make medicine seem worse than it is as well. One person’s medical nightmare may or may not indicate a troubling flaw in the medical system, and although an individual’s story is a valuable tool in drawing readers and viewers into a news piece, the proof of the trouble relies upon journalism that is thorough in its research and careful in its explanations. When those explanations are absent, the horror story can be ginned up to hint at a grave problem in medicine, implying a raging debate among physicians and researchers about the proper course of action, when in fact no real debate exists and there is almost total consensus by the medical community about the right thing to do.

  This deliberate co
nstruction of a controversy that does not, in fact, exist—brilliantly dubbed “manufactroversy” by Professor Leah Ceccarelli of the University of Washington—can of course apply to any story. (We have already seen one such noncontroversy in the form of the pseudodebate about Lyme disease.) The quality that defines medical manufactroversies is the heavy reliance on this medical synecdoche, where one person’s travails serve as a stand-in for the larger picture, and viewers are encouraged to conclude that the singular story represents a common state of affairs with respect to a treatment, a public health policy, and so on.

  No subject better defines the medical manufactroversy than the question of vaccine safety and effectiveness. As explained by journalist Seth Mnookin in his excellent book The Panic Virus, the public discourse about vaccines has been so dominated by fringe opinions, even highly sophisticated news consumers believe there is sharp disagreement among experts about the dangers of vaccines, when in reality vaccines are one of the few areas in medicine in which there is almost universal consensus with respect to its considerable benefits at the cost of vanishingly low side effects. No serious doctor or nurse, epidemiologist, or public health official who has studied the subject of vaccines thinks they are a source of grave caution.

  How has the value of vaccines become so misunderstood by the public? The scare story is one of the principal mechanisms, and one of the finest—or worst, one supposes—examples can be found in a recent TV show devoted to the controversies surrounding one vaccine. The vaccine in question was one of the newest on the block: Gardasil, the vaccine against particular strains of the human papilloma virus. Ironically, the show was hosted by Katie Couric, one of the most well-respected mainstream journalists, especially when the subject of health care is concerned. There is even a double heaping of irony here, because Gardasil’s value comes from preventing cancer, and Couric as a journalist has a special relationship to that disease.