8

“HEALTH WATCH”: HYPE, HYSTERIA, AND THE MEDIA’S OVERCONFIDENT MARCH OF PROGRESS

                To deal with the broader problem of anecdotes, what you need is a framework that tells you which anecdotes are almost surely wrong.

—PAUL KRUGMAN

The previous two chapters have looked explicitly at how uncertainty and our understanding of a treatment’s effectiveness are inextricably and irrevocably linked. Before that, we looked at uncertainty’s impact on diagnosis, as well as how uncertainty can make experts square off against one another, leaving not only laypeople but even ordinary practicing doctors scratching their heads, trying to understand what the right approach should be to some problem.

Yet whether the uncertainty involves the latest technology allowing a surgeon in San Francisco to use a robot to take out a patient’s gallbladder in Longmont, Colorado, or a cutting-edge drug that may revolutionize the treatment of spinal cord injuries, or a revised guideline on the treatment of emphysema, the vast majority of people learn of these advances through some form of mainstream media, whether the New York Times, network television news, National Public Radio, or links supplied by their friends on Facebook. (This is even true for most doctors, where all but the most specialized of specialists—who stay up to date at conferences and in journals—get their news from the same sources as most other people.) We swim in an endless stream of media, able to sample from dozens of stories about health each day. In this final stop on our tour of uncertainty, we’ll take a cursory look at how the media shapes our understanding of medicine, often by downplaying uncertainty’s importance. We’ll think about how it adjusts our perceptions of risk, lulling us into a false sense of security about things that are genuinely (if only subtly) dangerous in our lives, but encouraging us to become preoccupied with threats unlikely to ever do us harm.

As we complete this survey of uncertainty, we’ll finally consider in a formal way how all this awareness of uncertainty can be enabling, rather than making us feel depressed about how deeply flawed some of our medical practices truly can be. But, before we get there, we must understand how media can, even if only inadvertently, manipulate us while trying to inform us—and how we actively participate in that process. To start, we’ll consider how the media chose to portray a singularly remarkable event when some German doctors made an announcement that shook the world of infectious disease to its core.

The Berlin Patient

December 15, 2010, was just another day for HIV-infected patients and the people who care for them. Across the world, more than 6,000 people became infected, and although nearly all of these people would not realize it that particular day, they had joined the growing ranks of people around the world living with HIV, which numbered some 30 million. That same day, at the other end of the HIV continuum, nearly the same number (about 5,000), who had been infected for years, succumbed to the disease.

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. That 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 construction 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.

Couric’s history with cancer coverage began with the heartbreaking loss of her husband to colon cancer at age forty-two. Following his death, she assumed an activist stance toward colon cancer, using her considerable journalistic muscle at the Today show to promote cancer screening awareness. She underwent an on-air colonoscopy in 2000, and the number of colonoscopies in the United States was estimated to have increased by 20 percent the rest of that year following the episode. In 2005 she underwent a mammogram as part of Breast Cancer Awareness Month. She cofounded the group Stand Up to Cancer, whose aim is to provide grants to mainstream scientists focused on innovative research and has thus far raised more than $200 million. Her advocacy for cancer research and public health measures such as screening—no controversies were in evidence as part of this journalism—won her the Award for Distinguished Public Service by the American Association for Cancer Research in 2013. It was harder to find a journalist friendlier to the cause of cancer eradication than Couric. So it must have come as a surprise to the cancer research establishment later that year when Couric, who by then had become the host of an afternoon talk show called Katie, decided to air a segment titled “The HPV Vaccine Controversy.”

It was surprising principally because there was no controversy, at least among public health officials. HPV is a sexually transmitted virus with dozens of strains. Four of these strains are associated with the majority of cases of cervical cancer; having immunity to these cancer-causing strains should reduce the total number of cervical cancer cases, and Gardasil works by providing this immunity. HPV is also associated with other genital cancers as well as genital warts, and a vaccine rollout should reduce the incidence of these diseases as well. Gardasil is well tolerated; a study of nearly 300,000 young women from Sweden published in the British Medical Journal in 2013 found no serious adverse events associated with its administration. So there was fairly strong consensus that this was a big step forward in the field of cervical cancer. There simply wasn’t a raging debate going on among specialists.

What is controversial, however, is teen sex, and the recommendations are to provide vaccination for HPV at age eleven or twelve, prior to the onset of presumed sexual activity in mid- to late teen years by many or even most kids. That recommendation has angered socially conservative groups who believe premarital sex is morally abhorrent, and further believe the recommendation for HPV vaccination encourages such behavior. (No evidence has ever supported this claim.) These groups have found allies with antivaxxers, and the rollout of the vaccine has generated a backlash against Gardasil and its maker, Merck, as well as GlaxoSmith-Kline, the maker of another HPV vaccine called Cervarix, which is likewise accepted by the CDC and other professional groups as part of the recommended vaccinations. Regardless of the social policy discussion, in terms of the risk-to-benefit analysis, the HPV vaccine was a slam dunk.

Because there was no actual scientific controversy, Couric was obligated to spin a tale of an indifferent scientific medical establishment that was paying no attention to the bodies accumulating outside the clinic door. The centerpiece of the Katie episode featured Lauren Mathis, who claimed that Gardasil nearly killed her. Her story is the mirror image of Timothy Ray Brown’s: a medical dystopia in which ignorant doctors push her, jab by jab, toward death. Lauren’s story, and that of another girl named Christina Tarsell whose mother claimed Gardasil had killed her, were given the lion’s share of time. Toward the end, about three minutes were set aside for a pediatrician from Massachusetts General Hospital, Dr. Mallika Marshall, to try to counter the claims that the Katie episode had so clearly accepted at face value. Dr. Marshall’s eloquence and poise notwithstanding, it was largely a failure because the millions of viewers who had tuned in throughout the segment would no doubt have already concluded that Gardisil unleashes horrors aplenty. Indeed, given the overall tenor of Katie’s teach-the-controversy approach, Marshall’s presence simply allowed the producers of the show to provide window dressing to the notion that the show was somehow being objective and representing “both sides of the debate.”

Why can we be so certain that HPV vaccination is safe, and that Katie Couric not only misrepresented all the reliable evidence about its effectiveness, but essentially thrust a set of nonsensical claims at a credulous public, aimed directly at her afternoon TV-watching demographic group, with the apparent intent to stop moms from vaccinating their kids for HPV? Why should we think that her skepticism should have been applied at least with equal, if not more, force to the claims of these two mothers than to the vaccine manufacturers and the public health officials who work with them?^** What evidence allows us to conclude that she used the uncertainty inherent in claims of vaccine safety into a counterproductive exercise in sophistry?

In asking this question, I don’t mean to imply that skepticism isn’t warranted for public health officials or drug manufacturers or doctors at prestigious academic institutions. The problem with the Katie episode on HPV vaccines, and other reportage in this vein, is that the skepticism being applied to “the establishment” is totally out of proportion to the existing data indicating that “the establishment” got this one right. She allowed the accusations of HPV harm by her guests to stand without even the slightest inclination to signal to her audience that they might want to treat those accusations with some caution. Therefore, in the unspoken logic of the show, if these claims are good enough for Katie, why shouldn’t they be good enough to persuade a member of the audience?

Before I answer those questions, I should return to the idea of the spectrum of certainty. As I will show, HPV vaccination is a practice whose value is not completely at the far, positive end of the spectrum of certainty, but that’s mainly because we have yet to count in reality how many lives have been saved from preventing cervical cancer, which will take some time to do, as cervical cancer takes decades to manifest itself. Yet, as we will see, the risks of HPV vaccination are negligible, so even potential but not quite fully proven benefits, at the cost of vanishingly small risk, move us away from the absolute middle of the spectrum.

The answers to the questions above can be found in a variety of places, but a good example of how data is misunderstood by people who have already reached their desired conclusion can be found in a national database known as the Vaccine Adverse Events Reporting System, or VAERS. Some of the key claims made by HPV antivax groups rely heavily on data from VAERS, and, at first blush, the evidence they marshal would appear to be damning, especially because VAERS is a database not run by some antiestablishment alternative medicine group, but by the US federal government itself, in a joint effort of the CDC and the FDA. In the case of HPV, those hostile to the vaccine cite VAERS data indicating that, by the end of 2013, nearly 25,000 adverse events were associated with the vaccine, which included an even more shocking number of approximately one hundred deaths (the number can vary depending on the source). Why won’t public health authorities sound the alarm, or even recognize the threat, of a vaccine that kills so many?

To appreciate the answer, one must have a nodding familiarity not only with the guts of the VAERS system, but also with the process by which a drug or vaccine receives approval from the FDA. In the vast majority of cases, a so-called Phase III study is required of manufacturers to demonstrate that whatever they propose to bring to market is not only reasonably safe but also that it is effective at doing whatever the manufacturer claims it can do. In the case of Gardasil, that meant that Merck had to enroll nearly 12,000 young women, provide the vaccine, and follow them for three full years, during which time Merck repeatedly evaluated them to see what side effects they might have suffered from and whether the vaccine prevented the condition of cervical intraepithelial neoplasia—the forerunner to cervical cancer. Those results, which did indeed show that the vaccine prevented a significant number of cases of this protocancer, were published in the New England Journal of Medicine in 2007.

The safety of Gardasil was also studied in this paper, and the results have direct bearing on how one can interpret the VAERS data. Of the roughly 6,000 women in the vaccine arm of the trial, there were forty-five “serious adverse events”—the kind that would reflect the sort of data seen in VAERS. But because a Phase III study performed for FDA approval is very carefully controlled, there is an equal arm of subjects who don’t get the actual vaccine (they receive a dose of fluid lacking the virus-like particle that produces immunity, essentially getting saltwater). Therefore the researchers were able to look at the number of serious adverse events in that group as well. Because unusual and serious illnesses can occur in a small number of people at random, and because Merck was following 12,000 women for three full years, the placebo arm allowed them to compare the total number of serious adverse events between the groups.

Similar to the vaccine group, the number of serious adverse events in the placebo group was fifty-four. In raw numbers, this amounted to a higher percentage of cases, but in terms of statistical analysis, it was well within the range that one would expect random variation if a small number of serious medical problems were randomly distributed between two groups—that is, forty-five versus fifty-four is different, but not so different when the total number of each group is 12,000, and is probably due to pure chance. The lack of significant difference meant two things: first, because there was no evidence of additional harm in the vaccine arm, it almost certainly meant it was a very safe vaccine; second, not only were there an equal number of serious adverse events in both groups, it was also a very small number of people who had such problems. That is what one would expect when following a cohort of thousands of young women for three years. The vast majority of them will be fine, but a very small percentage will have something terrible—and even inexplicable—happen to them, whether they received a vaccine, took a pill, worked a particular kind of job, lived in a certain part of the country, or any number of other factors that could in theory be measured.

The Phase III trial is about as carefully constructed a scientific experiment as can be done on large numbers of humans, and the data that is produced is significantly more reliable than that produced by other ways of investigating the benefits and harms of a drug or vaccine. We saw this in the previous chapter when we looked at how hormone replacement therapy seemed to be a wonder drug when analyzed through the lens of other kinds of studies; when various Phase III–type trials were done and the numbers between those treated and those not were compared, those medications not only didn’t achieve the benefits everyone was so certain would be there, but they actually came with a small amount of harm. Viewed in this light, the evidence of the overall safety of Gardasil and Cervarix (whose Phase III trial included 18,000 subjects followed over the same time) was about as good as it could get.

Compared to the data generated in a Phase III trial, the VAERS database so frequently invoked in the pseudodebate about HPV vaccination is a different beast altogether. VAERS is a component of the regulatory oversight of medications and vaccines after they have been approved, known as postmarketing surveillance. The means by which data gets entered into VAERS bears no resemblance to the strict rules of evidence required of drug companies performing Phase III trials. Anyone can file a report to the VAERS database, at any time, regardless of when the vaccine was administered.^** The database makes no judgment as to which claims might raise genuine concern for vaccine safety because no supporting evidence is required to link the timing of the vaccine to the reported symptoms. Moreover, there is no control group that can be used for purposes of comparison. In the words of one medical scientist who blogs under the name of Orac, VAERS is the medical database equivalent of an unmoderated Internet discussion board, where pretty much anything goes. The hope, as the VAERS website itself notes, is that the system can be used to enable “the early detection of signals that can then be more rigorously investigated.” In other words, the CDC and FDA do not believe that it should be used as a source of reliable information in its pure, raw form.

More than two-thirds of VAERS reports are entered by vaccine manufacturers themselves as well as health-care providers. The remainder come from a variety of sources including state immunization programs and the vaccine recipients themselves, the latter group accounting for about 10 percent of total reports.

Reviewing a specific report in VAERS allows us to see how it actually works. Let’s look at the brief story of case number 29281 from the 2013 VAERS report, which is freely available to anyone wishing to download it, because it serves as a reasonably good example of the difficulties interpreting this database. Because this is already public information, and because we do not know who this person is, I haven’t altered any details here. The report, submitted in late December of that year, describes a young woman whose life had gone awry in the back half of her high school years, and whoever wrote the report—the use of “we” below could indicate a parent was the author—overtly links this decline to Gardasil:

Patient got the first Gardasil shot 7-25-12, the second 9/26/12, and the third shot 1/28/13. Im not sure the exact onset date except to say she got the second and third shot during her junior year in high school and she was continually telling me how fatigued, tired, dizzy, light headed and tired she was. She also had continued to complain about her heart racing, short of breath, heart pains, sleeping difficulty, chest pain, rib pain under her breast, brain fog, headaches, back aches, stomach pain, limb heaviness, neck pain random pains everywhere, seeing different shapes and colors in her vision, severe hip pain, electrical shock pain, and numerous other pains. In Aug 2013 (the beginning of her Senior year in high school) she was walking slowly like she had rode a horse to long, Sept 2013 she needed a walker because she was starting to trip and had trouble standing, Oct 2013 she had to use a wheelchair and unable to walk by herself. We have had MRI, bone scans, CT scans, xrays and numerous bloodwork [sic].

What’s going on here? It’s very difficult to know. We can make a reasonable guess that this young woman has become the victim of a tragic neurologic disorder, but the precise diagnosis cannot be divined from this snippet. Whether this is due to an oversight on the part of an evaluating physician or the manner in which the patient has attempted to obtain a diagnosis (are all these tests from the emergency room, for instance?), we have no idea. Could this be multiple sclerosis, a rare but not unheard-of condition in teenage girls? If it is—in fact, regardless of what it is—there is no way to know from the report whether her condition is a consequence of receiving the vaccine. This is another version of the correlation/causation problem we saw in the previous chapter.

We also cannot know whether this report is an instance in cognitive bias, because perhaps the author has been psychologically primed to link the two events in a similar manner to that of the psychiatrists of the Rosenhan experiment we witnessed in the first chapter, who themselves linked harmless neurologic phenomena to deep psychiatric illness. Had the author just watched the Katie episode, and under the power of the dark suggestions from the show, or even by encouragement from friends who had seen the show and planted the idea, suddenly and belatedly “realized” that the patient had received Gardasil a few months before the onset of her symptoms?^** If so, can this really be considered reliable data?

The episode aired December 4, and the report was filed December 29.

At the time case number 29281 was entered in the database, more than 10 million girls and boys had received the vaccine. Whenever you do anything to 10 million people—just give them a glass of water—some of those people will develop strange medical symptoms, and an even smaller subset will develop serious medical problems. That’s because they were going to develop them anyway, so the default assumption that a report like 29281’s implies causation indicates a deeply naïve view of the VAERS data.

Despite this, virtually all of the literature put out by groups opposed to the HPV vaccine, whether online or on paper, trumpets the number of serious adverse events, and deaths, in the VAERS database as proof of the giant cover-up perpetrated on an unsuspecting public.

None of this was discussed in the Katie episode. There simply wasn’t enough time for it because all the oxygen available was devoted to two horror stories by mothers who are convinced of the vaccine’s evils, data analysis be damned. Given her powerful platform, and the fact that she brought major credibility to the subject of cancer reporting, Couric could have taken a chance to use her program to ask a simple question on her audience’s behalf: How do we know when a vaccine is associated with harms? Surely she and her producers were aware of the rumors about HPV vaccination that were circulating among the kinds of people likely to tune into her show. They were probably likewise aware that this demographic was increasingly suspicious of the HPV vaccine, a fact that Katie Couric herself in all likelihood realized was due to pseudoscientific misinformation of the kind illustrated by the VAERS story. She could have used the opportunity to explain why the theory that HPV vaccination is dangerous is almost certainly nonsense, but she didn’t, going all in for an approach celebrating credulousness and making a virtue of misrepresentation, an exercise in Kool-Aid consumption that had all the appearance of a desperate grab for the approval of a viewing audience different in nature from those who so admired her during her stint at Today.

Backlash

As a testament to the perceived influence of a show like Katie, an eruption of criticism ensued within hours of the show’s airing, and the episode itself became a news story in its own right. Whether it was the kind of publicity the producers of Katie were seeking is unclear, but the mainstream media coverage wasn’t favorable, as the (entirely justifiable) story line became “Couric does irresponsible journalism.” A CBS news story written the following day documented the consensus opinion that Couric had engaged in innuendo of the worst sort. It quoted bioethicist Arthur Caplan, whose thoughts were representative: “The show was kind of inexcusable in terms of damage done. . . . [T]he problem in TV and all media, [is that] human interest drives the story. In science and public health, it doesn’t.”

Indeed, this CBS article serves as a decent template for what media stories about health should be. Anyone unfamiliar with the kerfuffle over HPV vaccination would read the article and conclude that it was, at least, safe, and at most, safe and effective. Moreover, the reader would be aware that there is a database that tracks adverse events from vaccination, but that most of these adverse events are minor. It never mentions deaths reported in the VAERS system because such reports cannot be trusted to indicate that the death is attributable to the vaccine, because that isn’t what VAERS is designed to do. The five minutes it takes to read the CBS news piece was considerably more valuable to an uneducated consumer than the thirty minutes that were devoted to the topic on Katie.

A mildly chastened Couric issued a not-quite-apology the following week in an online editorial for the Huffington Post. In the editorial, she acknowledged that she might have been more careful in exploring the subject. “Following the show . . . there was criticism that the program was too anti-vaccine and anti-science, and in retrospect, some of that criticism was valid,” she wrote. This had the appearance of contrition, but like everything else attached to the Katie HPV episode, it was mere show, not least because essentially all of the criticism levied at her following the show was valid. After backtracking for a few paragraphs with almost mea culpas, she plunged back into the pseudoscience that got her into trouble in the first place, even invoking the very VAERS data that serves as a primary weapon in the antivax arsenal of misrepresentation.

Couric, in fact, was so untroubled by the whole dustup that she let the video segment that was the object of much of the criticism stand on the Katie website. Because this would be a strange action to take for someone who was earnest in trying to create a more “balanced” picture of the safety of HPV vaccines, it is hard not to conclude that Couric was trying to have her cake and eat it, too, by pacifying critics with theoretical apologies at the Huffington Post website while simultaneously perpetuating the anti-intellectual claims on her own. “IS THE HPV VACCINE SAFE?” her web page asked in large all-caps lettering. The logic implicit in asking such a question is that the answer is in doubt, because if it really was a remarkably safe vaccine, it wouldn’t make any sense to ask the question at all. During the remainder of Katie’s TV run, none of this was retracted or even altered. The Katie website did include the CDC recommendations, as well as the segment where Dr. Marshall “defends” the vaccine, but by leaving all the misdirection to stand at her website, Couric effectively conceded that she had no real interest in doing anything other than pandering on this topic.^**

The final Katie episode aired on June 9, 2014. The show’s website, as I complete revisions in mid-2015, is no longer available on a basic Internet search. Clips of this Katie episode are still available on YouTube as of June 2015, and in Orac’s blog posts on the matter, the links for which can be found in the bibliography.

Fear, by the Numbers

The Katie “HPV Controversy” episode is only a highly egregious instance of a broader motif at work in health-care coverage. If the story of a single person is carefully selected and really does highlight some kind of broader trend in medicine, then of course such an illness narrative is a powerful tool; when a narrative is pulled out of context and thrust on a frequently distracted public, as exemplified by the guests on Katie, there is a potential for real harm. Yet one doesn’t have to watch a poorly executed half-hour segment bordering on propaganda to get a distorted view of the real threats one faces and what one should do about it. All one has do to is watch the nightly health segments on television or look at their online equivalents.

Death, of course, is scary, and in a world of 7 billion people there is always someone dying somewhere of something particularly scary. Infectious disease doctors and epidemiologists have a website known as ProMED that takes advantage of the instantaneous worldwide communication provided by the Internet, and it is used to monitor various worldwide outbreaks at any given moment in time so that appropriate public health resources can be brought to bear to contain serious outbreaks. Dozens of reports of deaths at the hands of the witches’ brew of the world’s microorganisms come filtering in every day: brucellosis, avian influenza, Rocky Mountain spotted fever, Hantavirus, dengue, and a host of other maladies make routine appearances on the ProMED list. Reading it, especially for the first time, requires a certain steeliness of spirit. If you knew all of the ways you could die from exotic infections on a daily basis, you’d stay in bed all day with the sheets over your head and only come out for an occasional cup of soup.

But as a matter of statistics, you aren’t going to die from these infections, and the reason ProMED is an important tool for doctors looking at disease patterns but not for ordinary people living their lives is because there is an absolute lack of context with respect to these reports. The steady stream of death that flicks across the ProMED page does not ruin the lives of the professionals reviewing that data because they traffic in such matters on a daily basis and can read these reports with the much-needed context already hardwired into their brains. Yet mainstream media news reports of rare deaths from unusual viruses and bacteria almost never are accompanied by such context to help laypeople make sense of it. The consequence of that lack of context is fear, and because of that fear people overestimate remote threats and vastly underestimate real ones.

As I write this book in 2014, there is a low rumble about a nasty infection that has been given the tongue-swallowing name of Middle Eastern respiratory syndrome coronavirus—MERS-CoV, or just MERS.^** From its discovery in 2012 to the early months of 2014, MERS has killed about sixty people. A lot of press has been devoted to MERS, and many of these reports have dutifully noted that it bears a close relationship to another notorious virus, SARS, which had captured the world’s attention in 2003 as part of a global outbreak that killed as many as eight hundred people, perhaps more. SARS became part of an elite group of viruses that are well known to laypeople despite being remarkably rare. In addition to SARS, people who have only a passing knowledge of health topics are aware of avian influenza, the Marburg virus, Eastern equine encephalitis, and probably the all-time scary virus champ, Ebola—whose notoriety likely not only derives from its high mortality rate, but from the fact that it comes from deep within sub-Saharan Africa, a region over which people from developed nations still have considerable anxiety and guilt.^††

I wrote most of this chapter in the spring of 2014, before the largest Ebola outbreak in history had truly erupted and dominated world health news stories. I am willing to wager that MERS has largely been forgotten by most people who expressed deep reservations about allowing flights from Saudi Arabia to enter US airspace only a few months ago.

And I finish the revisions on this chapter as the Ebola epidemic is winding down (but not yet extinguished) in summer 2015 while MERS has erupted in Southeast Asia and is once again dominating health news headlines. So I leave these bookend footnotes in place because who knows what will be the Terrifying Virus of early 2016.

Could MERS become a real-life Andromeda strain? Yes, it’s certainly possible. Of all the scary viruses that have become objects of media fixation in the past few decades, only SARS has all the necessary ingredients to cripple the health infrastructure of every country on earth: it is lethal, it moves quickly, and it is airborne, easily passed from person to person and therefore able to outstrip even the best quarantine procedures.^** MERS exhibits the same basic biological features as SARS and indeed is a member of the same phylogenetic group, the Coronaviruses, so it’s plausible to assume that it could wreak havoc on civilization.

For instance, Ebola and Marburg, which are passed through blood and other body fluids, have thus far not developed into lethal airborne mutants. The Ebola Reston virus is airborne but lethal only to nonhuman primates. It was the subject of Richard Preston’s bestseller The Hot Zone and formed the basis of the movie Outbreak, starring Dustin Hoffman. Although it was not “news” by any literal definition, movies such as Outbreak and their nonfiction counterparts like The Hot Zone become the narrative backdrop against which real outbreak stories such as the current MERS-CoV reports are interpreted by laypeople, or even specialists for that matter.

Yet one could just as easily endlessly fret over equally catastrophic threats to the world. We could include monthly news stories about how close we periodically come to nuclear annihilation (or at least what would happen if a rogue political group got hold of just one); we could publish stories of asteroid strikes, noting that, had some been just a little bigger and in a more metropolitan area, hundreds of thousands of lives might have been threatened. These are very real dangers that we face, but they are equally difficult to quantify. The media obsession with magnifying these threats on a constant basis leads to what Marc Siegel, a physician and writer, has dubbed “the epidemic of fear.”^††

The irony of Siegel’s professional life is that he serves as a senior medical contributor at Fox News, given that Fox has arguably done more than any other powerful media outlet at exploiting fear.

The downstream effect of medical panic is that, because we can’t really do anything at all to prevent a cataclysm like a MERS pandemic, we become more passive about the kind of actual threats that can be found in our everyday existence. “Influenza” is a word, when it is shorn of its terror-inducing modifiers “avian” or “swine,” that people often assume is the equivalent of a bad cold. Yet influenza is a killer: since 1976, when the CDC began systematically tallying influenza mortality, the estimated number of annual deaths from the flu has ranged from about 3,000 to 50,000, with a typical year resulting in about 25,000 deaths. One can actually do something to prevent influenza in the form of getting the annual flu vaccine. The flu vaccine doesn’t provide 100 percent protection (estimates hover in the 60 percent range), but it is effective and unquestionably prevents morbidity and mortality. Yet our national vaccination rate among adults runs about 40–45 percent. The only good news is that nearly two-thirds of adults most at risk for the worst ravages of influenza, those over sixty-five, are vaccinated annually; the very bad news is that among equally at-risk “near-seniors” in the fifty to sixty-four age range, fewer than half get vaccinated. Given that the only effective action one can take in the face of the rare but lethal MERS agent is to buy Depends undergarments and pee one’s pants, it seems a waste not to get a vaccination for something that can legitimately be prevented.

The overemphasis on reporting rare and scary diseases also has the effect of inuring the public to the real threats that we face every day. A death toll of 25,000 from influenza in one year is big, but it doesn’t hold a candle to the true killers in an industrialized country like the United States. In any given year for the past generation or so, about 2.5 million people die. One of every four of those deaths is due to heart disease. When similar diseases such as diabetes and strokes are taken into account, about one in three Americans dies from such pathology. Although the causes of these diseases are multifactorial, the science is well established that a low-fat, low-calorie diet, along with routine, vigorous exercise, have a dramatic effect on lowering the incidence of vascular disease. Would you like a news story about an epidemic? Would there be nonstop coverage if a new virus killed even a fraction of the percentage of people who die from cardiovascular disease in one year?

Yet this is an epidemic. Call it a virus, too—the “too much fat, not enough exercise virus” if you wish. But a casual observer of the news would be forgiven for failing to appreciate the gravity of the danger, that signal being buried in the noise of reports of frightening but trivial threats.

Indeed, it is even possible that some people might conclude that exercise itself could be dangerous, taking a bad problem and making it even worse. In the summer of 2013—at the precise time of year when people should be maximally motivated to get outside and put their muscles to aerobic activity—the New York Times published an article about a health study of Swedish cross-country skiers with the remarkable headline “Can You Get Too Much Exercise?” The article went on to describe a study indicating that these Swedish marvels of aerobic activity, who participated in an annual fifty-six-mile cross-country ski event, were slightly more likely to be hospitalized if they participated in more of these races. It was, in fact, a very small effect. Moreover, the comparison group wasn’t a cohort of people who sat around munching Cheetos or their Swedish equivalent while living a sedentary life; it was the other racers themselves, making exercise-versus-lack-of-exercise comparisons useless.

Normally an excellent source of news for health issues, the Times tried to be a little too cute by asking this question and by reporting on the results, even with a fairly long, detailed discussion that followed the explanation of the study. Because one would normally assume that the answer to the question Can you get too much exercise? would be no, people who perused the Health section’s titles without diving into the particulars might be forgiven for concluding that exercise wasn’t all that it was cracked up to be. Perhaps for Swedes pushing themselves to the absolute limit of endurance, that could be true, but, for the rest of us, there is simply no question that we exercise far too little. That mainstream media health news does not treat cardiovascular disease as the single most important, most lethal, and yes, scariest epidemic of our time is evidence of the skewed perceptions of what constitutes danger in our lives. Can you be certain that you will die of a heart attack? No, but you can be as certain as one can that if you eat and laze yourself into diabetes, you stand a much higher risk of it than if you exercise and lay off the megaburrito specials with large fries washed down with thirty-ounce sodas.

Caveats and Silence

What I’ve tried to demonstrate thus far are three major mechanisms by which the media obscures the importance of this simple health advice, and each of these mechanisms is related to either discounting or overemphasizing uncertainty, often doing so through inappropriate anecdotes. The case of the Berlin patient demonstrates a situation in which there is too much certainty of a new therapy’s promise; the vast majority of experimental therapies of the kind that Timothy Ray Brown endured never pan out, and, by not attaching this critical qualification, news consumers (especially casual ones) overestimate the genuine promise of cutting-edge medicine. The Katie HPV vaccine debacle is an instance of portraying medicine as being far more uncertain than it really is, using a single person’s story to trump a large amount of data that all points toward the benefits of a given therapy, all the while hiding behind the fig leaf of logic that one can’t prove a negative. And the stories about the respiratory virus known MERS display how the media can lead people to do what former President Bush called “misunderestimation” in this case of the real risks that we face in life.

There is a fourth path by which uncertainty gets warped in far too many media articles. This relates to the language used by journalists when they describe medical research, and the impression that can be created by such language. For instance, perhaps the two most pernicious phrases in medical journalism are “researchers have found” and “doctors have discovered.” Those words “found” and “discovered” give the impression that whatever they found or discovered was unassailably, incontrovertibly there, like a new species of Amazonian bird or a new set of hominid bones unearthed in Olduvai Gorge. They imply that physicians and human researchers are looking at the world exactly as it exists. A more precise analogy is that we are looking at the world through cracked, warped, and foggy glass: there is some external reality out there, but getting at that reality is sometimes difficult, and all of our speculations should be regarded with skepticism.

How do articles utilize the wrong language, besides applying these two blanket phrases? In many cases, the wrong language is simply no language at all. By failing to mention caveats to research—and all research has caveats—too many of the health news stories create misperceptions among their readers. Medical scientific research is, in fact, a daily exercise in uncertainty. Investigators make their living by staring at streaked gels, trying to divine whether those streaks indicate an underlying reality. Bench research routinely leads scientists into blind alleys, and clinical research often is accompanied by about-faces where one study will show something to be beneficial, only to have that study contradicted by a trial a year or two later. This portrayal of smart people walking around laboratories with large question marks above their heads is often absent in health reporting. Every new paper that a medical center trumpets with a press release is accompanied by the aura of inevitable certainty, researchers being portrayed as a Bringers of Truth to the world rather than people who think they might be on to something, with a partial shrug of the shoulder.

Gary Schwitzer, as a website devoted to his work notes, has specialized in health-care journalism involving radio, television, and the Internet in a career spanning four decades. Perhaps more than any other person in the United States, Gary thinks about the lack of caveats in health news reporting, the silent gaps in health stories that lead people to the wrong conclusions about the current state of health care. He should be as famous as Sanjay Gupta; instead, he is little known outside a small group of health-care professionals and media types. He is the embodiment of media skepticism, coming at his work from an insider’s perspective, arguing about what could be instead of what currently is, and doing so by knowing intimately what changes really are possible and offering concrete solutions for doing so.

In 2006, Schwitzer founded HealthNewsReview.org, a website devoted to, as it says, “improving the dialogue about health care by helping consumers critically analyze claims about health care interventions and by promoting the principles of shared decision-making reinforced by accurate, balanced, and complete information about the tradeoffs involved in health care decisions.” Led by Schwitzer, HealthNewsReview pooled the talents of nearly thirty health-care professionals ranging from doctors and researchers to writers and reporters and was designed with one basic idea in mind: grade health news stories from one to five stars based on overall quality. The reviewers analyze news stories focusing on ten principal qualities, among them whether it quantifies benefits, explains harms and quantifies those as well, reviews the quality of the evidence, and establishes the novelty of the idea on which the report is based. In a way, those categories can be thought of as an elaboration of the question How certain can we be that what the story claims to be saying really is true?

What the reviewers found is that these critical ingredients for context were often missing. A representative sample can be found in a review of an article published in US News & World Report in 2007. Titled “To Build a Knee,” the article is a poetic paean to the magic of the computerized “motion analysis laboratory” and the role it plays in helping orthopedists decide on what measures to take, up to and including knee replacement, which the article highlights in the best possible terms. “Knee replacement can bring an end to years of crippling pain. ‘Ninety-five percent of the people I treat feel much better after having surgery. How great is that?’” asked Dr. Stephen Haas, the chief of the knee service at the Hospital for Special Surgery in New York City.

This is a classic entry in the category of “good story” on health care, one in which doctors appear to be miracle makers, and their work, the work of angels. How great is that? On the one hand, it is great, and knee replacement really can bring an end to years of crippling pain. But the job of a health news piece is to give context: When can surgery have that miraculous effect? Moreover, its job is to include caveats: How often do things go wrong? Is Dr. Haas’s claim of major improvement in 95 percent of his patients really accurate? Can someone else out there verify that claim? And what happens to the 5 percent who don’t improve? Do they just not improve, or do they have complications, and if so, what are they? And, by the way, how much does a knee replacement cost?

Answering those questions is what good health reports do on a daily basis rather than making medicine sound like an advertisement, and HealthNewsReview found this particular news piece wanting. “Total knee replacement is but one treatment that . . . yields often remarkable results,” the review noted, echoing the sentiments of the article. Then came the caveat: “Despite its good reputation though, there’s more to the operation than this article’s glancing overview suggests. For starters, knee replacement is a major surgery with potentially important complications, including blood clots in a leg or lung, infections, and (rarely) death.” Of the ten criteria that HealthNewsReview uses, one—whether the story appeared to be a rewritten version of a press release—was not considered applicable. Of the remaining nine that were graded, seven were considered to be unsatisfactory and reflect the kinds of concerns raised by my questions above. The reviewers thought that the story did establish the general availability of the procedure and explained its novelty, which is not altogether surprising because the inclusion of these items in the story serves only to portray knee replacement in a good light.

It’s not that what US News & World Report published was false, but the silence on the caveats ultimately lead to a false impression: It’s safe! It’s great! Look at the neat computer lab! Everyone’s doing it! Should patients do due diligence when researching options for chronic knee pain, which includes finding out the answers to the kinds of questions that I’ve posed? Why yes, of course they should. But isn’t that the reason we have news organizations like US News & World Report? Shouldn’t they be the first line in helping patients understand the risks and benefits of a treatment? And if the reporters who write puff pieces like “To Build a Knee” don’t think it’s their obligation to include this level of cautionary detail, then whom precisely do they think they’re working for?

Not only did Schwitzer and his colleagues take this message to the masses at the website, but he communicated this information to the very professionals being covered by this news. Writing in the scientific journal PLoS Medicine in 2008, Schwitzer analyzed five hundred stories that HealthNewsReview had evaluated. Using the ten categories, Schwitzer presented data that should be considered alarming by anyone who thinks that patients aren’t getting the proper context in health news, well before they’ve ever stepped foot in a doctor’s office to have a discussion. What were the categories most consistently missed? Several of them are those that, when excluded from a news story, can give people warped perceptions about how much uncertainty surrounds the subject, similar to what I have illustrated in this chapter. Only about a third of these articles quantified either benefits or harms, and only a very slightly higher percentage (35 percent) discussed the quality of evidence in a medical news story. Only half of the news stories sought independent sources or explored whether the people touting some medical treatment technology had a financial conflict of interest. The categories where news stories did best was exactly the categories the “To Build a Knee” story nailed, and they were also not uncoincidentally the most self-serving: 70 percent of stories highlighted the availability of new medical approaches, and 85 percent of stories established the true novelty of the new approach.

But perhaps the most chilling statistic is that 65 percent of news stories went “beyond a news release.” That means that one out of every three news stories is just the regurgitated offerings of a public relations department from some university, doctors’ office, or drug or device company. It is safe to say that lightly amended versions of press releases generated by these groups aren’t going to give consumers critical information that might paint a more nuanced picture of their promise, yet every third story to be found on the major media websites as of the mid-2000s did just this.

When HealthNewsReview came bounding onto the US scene, it was greeted by the medical and the media establishment in two very different ways.^** The first was overwhelming praise. The year the website was launched, it received the Knight-Batten Award for innovations in journalism from the group J-Lab, a center of American University’s School of Communication. The following year it received a Mirror Award from Syracuse University’s Newhouse School of Public Communications, and a few years later it won the title of Best Medical Blog from the website Medgadget.com. The Columbia Journalism Review lauded its mission in a news item in 2011. Among medical scientists, the journal PLoS Medicine published Schwitzer’s analysis with an editorial praising his work, saying that his “alarming report card of the trouble with medical news stories is thus a wake-up call for all of us involved in disseminating health research . . . to work collaboratively to improve the standards of health reporting.”

HealthNewsReview.org was modeled after a website in Australia called Media Doctor, the true trailblazer in the field.

The second reaction was, it appears, more important to the lifeblood of HealthNewsReview. That reaction was not one, as one might think, of overt hostility. Rather, it was one of indifference: the multibillion dollar media conglomerates that were, consciously or not, complicit with Big Medicine in foisting fluff on a less-than-ideally educated public did not respond in defensive outrage. For the most part, they didn’t respond at all, acting as if none of this critique was actually taking place. Whether they were even aware of HealthNewsReview’s mission—which ultimately was not to throw spitballs at the media but rather to provide feedback to enable the media to do its job better—is not completely clear. The media tool kit provided by the website, which includes a set of tips for journalists to interpret how studies are done and how to understand the impact of their findings, in addition to a list of independent experts to help journalists with their stories, wasn’t apparently useful enough to the major organizations to figure out a mechanism to keep a resource like this sustained. For in July 2013, after about seven years inhabiting cyberspace, HealthNewsReview, like the Australian website Media Doctor on which it was based, lost its funding—though read on to the next chapter for an update.

Meanwhile, the band keeps playing a happy tune.

Full Circle

This may seem like a particularly unpleasant note on which to complete our survey before we draw final conclusions. The message that the media ignores its own best advisors, and routinely misrepresents health stories by avoiding discussing how much uncertainty exists on a given topic, leaves one wondering how it might be possible to change such a nonresponsive structure. After all, we can’t all become reporters, to say nothing of statisticians or scientists, and simply perform the research on all of these topics firsthand. We need media to supply us with accurate and contextualized information. Short of becoming a chief of a health news division, how do we change the system?

We don’t, of course, because almost no single person is capable of doing this, even with all the best training in the world. Instead, we do something much more profound and empowering: we change ourselves. Simply by understanding uncertainty, we become more able to find the gaps and overstatements in a news story. The more we focus on the “how” of uncertainty, the better we become at carrying around a little, internalized HealthNewsReview in our brains. That allows us to change the dynamic from a monologue, where we passively receive the news, into a dialogue, where we actively engage with it. In short, we turn news consumption into a two-way street.

Changing ourselves, and changing how we interact with the medical system, is the basis for a healthier and more fulfilling experience as a patient. Understanding uncertainty is liberating rather than oppressive, and it allows us to utilize the dialogue model not only when we read a health news tidbit, but when we sit in the office and face a doctor with decades of training. How to incorporate this powerful tool is how I’ll conclude the book.

*  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.

*  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.

*  In asking this question, I don’t mean to imply that skepticism isn’t warranted for public health officials or drug manufacturers or doctors at prestigious academic institutions. The problem with the Katie episode on HPV vaccines, and other reportage in this vein, is that the skepticism being applied to “the establishment” is totally out of proportion to the existing data indicating that “the establishment” got this one right. She allowed the accusations of HPV harm by her guests to stand without even the slightest inclination to signal to her audience that they might want to treat those accusations with some caution. Therefore, in the unspoken logic of the show, if these claims are good enough for Katie, why shouldn’t they be good enough to persuade a member of the audience?

*  More than two-thirds of VAERS reports are entered by vaccine manufacturers themselves as well as health-care providers. The remainder come from a variety of sources including state immunization programs and the vaccine recipients themselves, the latter group accounting for about 10 percent of total reports.

*  The episode aired December 4, and the report was filed December 29.

*  The final Katie episode aired on June 9, 2014. The show’s website, as I complete revisions in mid-2015, is no longer available on a basic Internet search. Clips of this Katie episode are still available on YouTube as of June 2015, and in Orac’s blog posts on the matter, the links for which can be found in the bibliography.

*  I wrote most of this chapter in the spring of 2014, before the largest Ebola outbreak in history had truly erupted and dominated world health news stories. I am willing to wager that MERS has largely been forgotten by most people who expressed deep reservations about allowing flights from Saudi Arabia to enter US airspace only a few months ago.

†  And I finish the revisions on this chapter as the Ebola epidemic is winding down (but not yet extinguished) in summer 2015 while MERS has erupted in Southeast Asia and is once again dominating health news headlines. So I leave these bookend footnotes in place because who knows what will be the Terrifying Virus of early 2016.

*  For instance, Ebola and Marburg, which are passed through blood and other body fluids, have thus far not developed into lethal airborne mutants. The Ebola Reston virus is airborne but lethal only to nonhuman primates. It was the subject of Richard Preston’s bestseller The Hot Zone and formed the basis of the movie Outbreak, starring Dustin Hoffman. Although it was not “news” by any literal definition, movies such as Outbreak and their nonfiction counterparts like The Hot Zone become the narrative backdrop against which real outbreak stories such as the current MERS-CoV reports are interpreted by laypeople, or even specialists for that matter.

†  The irony of Siegel’s professional life is that he serves as a senior medical contributor at Fox News, given that Fox has arguably done more than any other powerful media outlet at exploiting fear.

*  HealthNewsReview.org was modeled after a website in Australia called Media Doctor, the true trailblazer in the field.