by Steven Hatch
Thus, my impression remains that even with new guidelines about to be issued, not much has changed, and this book’s consideration of a report that was issued nearly a decade ago is still very topical. For which I suspect my publisher is breathing a sigh of relief. End of aside.)
Prolonged antibiotics (that is, months and months) for so-called chronic Lyme disease occupy that part of the spectrum where we become more certain of the harms of treatment. As to what causes the symptoms that are given the label of chronic Lyme, it is a true unknown unknown—it is even unclear whether Lyme itself plays a role at all. A variety of theories have been proposed to explain chronic fatigue syndrome, many of which involve various infections and all of which are highly speculative. The simple truth at this point in time is that nobody really has any idea why this happens to people or even how to measure it. Nevertheless, we do know with much higher certainty that more antibiotics aren’t helpful and are highly likely to be harmful. Long courses of antibiotics for chronic Lyme is out at the right end of the spectrum of certainty, and we’ve known this for well over a decade.
On this very brief tour of the certainty spectrum, we should finish by coming full circle. As I’ve indicated, in medicine there are very few absolutes, few points at which we really can look a patient in the eye and say, “just trust us,” and mean every syllable. Part of this is that all treatments come with risks. The conversation must deal with the balancing of these risks and benefits. But there is one area of medicine in which the benefits are so enormous, and the risks so minimal, that it occupies a spot on the far left of the certainty spectrum and represents the single greatest triumph of modern medicine. Not altogether surprisingly, the public perception is that this medical miracle is actually a highly controversial topic. But it’s not, and the reason it’s not is due to the overwhelming scientific evidence that it saves lives and is associated with almost no harm.
I am referring to the practice of vaccination. From their origins, when the practice of protecting against smallpox through variolation (a forerunner to true vaccination) was introduced to Europe via the Ottoman Empire in the early eighteenth century, vaccines have always engendered a certain level of paranoia. Over these three centuries, some of the arguments against the practice remain more or less the same: one of the complaints that the clergy levied against smallpox prevention when Lady Wortley Montague was among the first to not only engage in the practice but publicize it as well, was that the practice defied God’s will, for if one was meant to get smallpox and die, that was fate and fate should not be circumvented. Today’s antivaxxers, with their zeal for what they fancy are “natural” remedies, sometimes organize “measles parties” so that their children can be exposed to the virus in one happy group. Whether one wants to let God sort them out or let Mother Nature take her course (two different but equally powerful kinds of narratives driving these attitudes), the hostility to vaccination in part rests on a fatalism that made only a small amount of sense at the advent of the Enlightenment, and makes considerably less sense today.
It is impossible to assess with any accuracy the total number of lives that vaccines have saved since Edward Jenner began the practice of vaccination in earnest in 1796, but that hasn’t stopped researchers from making some decent attempts at estimating the effect where the epidemiological data are more reliable. Recently, the CDC engaged in just such an exercise. In order to make reasonably solid conclusions, it focused narrowly on childhood immunizations over the twenty years between 1994 and 2013. In this brief span of the vaccination age, the estimates are mind-boggling: 322 million overall illnesses along with 21 million hospitalizations were prevented, and more than 700,000 lives were saved. The estimated cost savings was more than $1 trillion.
The biggest lifesaver came from preventing diphtheria, a disease that is almost never talked about today but was an absolute terror in the early twentieth century. The vaccines that were estimated to have saved large numbers of lives included vaccines against measles, pneumococcus, Hepatitis B,* and to a smaller extent pertussis, polio, and a relatively new vaccine against the bacteria known as Haemophilus influenzae B. The remainder of the vaccines proportionally saved a smaller number of lives but often had big impacts on morbidity. For instance, the vaccine for varicella (the virus that causes chickenpox) was estimated to have saved perhaps one thousand lives over these twenty years—a still not inconsequential sum—but prevented nearly 70 million illnesses.
The estimated lives saved for Hep B run into the future because Hep B causes chronic liver disease that can lead to liver cancer. Because this happens decades later, children vaccinated against Hep B (especially children of Asian and African immigrants, where the prevalence of the disease is very high) will reap the benefits later in life.
That’s just over twenty years of work in just one country. Suffice it to say that the burden of disease in many other countries is much higher, and therefore the benefits of vaccines in places like Ulan Bator or Kinshasa are that much more profound. Keep in mind that these are lives saved—tragedies averted—usually with a one-time clinic visit. Moreover, most vaccines, especially those given in childhood, provide extremely high levels of protection for the recipient. Tetanus, measles, polio, and diphtheria are almost totally unheard of among those who have been vaccinated. Contrast this with the impact of statins I discussed in Chapter 6, which are clearly lifesaving drugs but only reduce the mortality from heart disease by a modest portion, require lifelong adherence, and carry a small number of risks.
It’s safe to say that, assuming we continue to develop an ever more sophisticated understanding of the human body and how to keep it healthy, doctors two hundred years hence will look back at our statins and our antidepressants, our mammograms and our CAT scans, our chemotherapy and our blood pressure management, and think that we were only really a step or two beyond butchery. But they will look at what we did with vaccines, and they will see real accomplishment in precisely the same way that we regard Newton and his laws of motion, or Harvey describing the circulation of the blood. The success of vaccination is truly the one matter on which we can bring near certainty to the discussion, and it is a heartbreak to see such an easy topic so terribly muddled in the public discourse. There are books that elegantly explain this principle in much greater detail than I have in these meager paragraphs, of which volumes such as Paul Offit’s Autism’s False Prophets, Seth Mnookin’s The Panic Virus, and Arthur Allen’s Vaccine are but a few.
Media
Exercise more. Eat less. Don’t smoke. Everything else is commentary. This should be the beginning and ending of every single health news story. It is the most important message the media could convey about health, and yet most Americans don’t understand just how important this message is because it is obscured in a dust cloud of largely irrelevant material. Of course, educated Americans are aware that there are health benefits to be had by a moderate diet and regular exercise, and certainly the news media doesn’t try to oppose that message at a conscious level. However, the media’s fascination with the latest bauble of technology and its obsession with improbable threats ends up producing the same effect.
The essentials of American health—or lack thereof—can be boiled down to these few basic points: we eat too much, and too much of that too much consists of crap; we don’t exercise anywhere near enough because we spend far too much time either sitting in front of televisions or getting to and fro in our cars; and a smaller subset of us smoke cigarettes, a practice that wreaks disproportionate havoc on the body. Of the many news stories on lifestyle research—what types of food and drink are associated with healthy outcomes, whether trans fats are healthier than saturated fats, the healing powers of the açaí berry, and so on—those that fail to place such stories in the context of those basic points aren’t really making any genuine contribution to health education. Readers of such articles invariably walk away with wildly skewed notions of what they need to do to improve their health, which accounts in part for the rep
eated waves of fad diets or trendy foods that dominate the health consumer market.
The conversation about uncertainty is not merely between patient and doctor, for both patients and doctors enter the clinic doors having shaped their opinions by watching the evening news, or reading online articles sent by friends or colleagues, or just soaking in popular culture where some health story is related in a movie or TV drama. It may be too tall an order to hope for all forms of media to highlight the challenges that uncertainty brings to the practice of medicine, but it seems reasonable to expect at least health reporters to understand something of it. In the news media, the state of affairs is so sorry that really the only direction to go, in terms of quality and sophistication, is up.
How can health news stories achieve this? Simply put, they can acknowledge that uncertainty happens, and, in putting it out there for all to see, they can explain where on the spectrum of certainty a given story belongs. Let’s suppose that some group of researchers has found a drug known as K29-X that can reverse multiple sclerosis in rats. They publish their results in a prestigious medical journal, and a press release is generated by the medical center where the researchers work. Some local TV stations pick up the story and devote three minutes to the promise of K29-X. Various viewers afflicted by the disease then happen to watch the feature on K29-X and soon are called by friends who have seen the pieces as well. Should they call their doctors’ offices asking for a prescription?
In reality, the better question to ask is whether K29-X has even been tested in humans—which it almost certainly hasn’t—but after such a story lands on the local 6 p.m. newscast, one can rest assured that, the following day, the administrators of local neurologists’ offices across the viewing area will be deluged with calls. I’m making the K29-X scenario up, although the phenomenon I’m describing is very real. The “HIV cure” story of the Berlin patient happened to have been a nationwide example of the same, and HIV providers spent much of those weeks in December 2010 tamping down expectations for their patients (most of whom were healthy anyway through the magic of antiretrovirals) who thought they could be free of the virus henceforth.
So the starting point here is to couch a story like this in a chain-link fence of caveats so that viewers might catch the message of “enter at your own risk.” Or believe at your own risk. K29-X was used in an experimental model for MS that was not MS itself—uncertainty—was studied by looking at animals rather than humans—uncertainty—animals that are only distantly related to humans—uncertainty—nobody has any idea whether or not K29-X is even safe in humans—uncertainty—and even if it turns out to be safe, nobody has any idea whether it’s effective in humans —uncertainty.
Is this a lot of uncertainty? Is this in that part of the spectrum of uncertainty that includes the unknown unknowns, where really just a bunch of clever scientists have been messing around with some interesting ideas, none of which may have direct applications for multiple sclerosis, and even if it does are almost definitely not going to happen anytime soon? Pretty much. Of course, local newscasters may not be interested in hearing this critical appraisal, as it may interfere with their business model. So, until this changes, the only reasonable solution in the interim may be to turn the television off—or to construct that mental chain-link fence on one’s own. There is a value in actively identifying the limitations of health news stories, and although it takes some practice, one can get pretty adept at doing so after a time.
Health news would also better serve its consumers by explaining the quality of research and the level of evidence that supports a given claim. So many of the items that purport to show odd or counterintuitive health information are based on small observational studies, which are subsequently extrapolated and inflated into sweeping statements that bear little relation to reality. The New York Times article that considered the health benefits of dark chocolate was careful to note the relatively weak level of evidence supporting the claims of the researchers, specifically noting that the research was observational in nature, akin to the kind of research that was performed on the benefits of hormone replacement therapy before a properly constructed drug trial showed that hormones didn’t lead to greater health. I see no reason why all health news can’t similarly do this, even if one is talking only about a televised “health minute.” It takes but a moment to say that the quality of a given type of research is high, medium, or low; no matter how cleverly a researcher designs an observational study, it’s still an observational study, and reporters would serve their readers and viewers well by explaining the differences among these types of research as part of every single report.* Again, readers can’t change what news organizations do, but what they can do is identify whether a useful assessment of a study’s quality is present, and, in the age of the Internet, it is possible to find legitimate sources that will discuss these studies, especially those of interest to the general community.
Throughout the West African Ebola epidemic, for example, the BBC articles covering Ebola included a few bullet points on the virus—how the virus spreads, how long it takes a person once infected to become sick, what options there are for treatment, and so on. These were the same few bullet points, in every single article, so that lay readers may always have some contextual information in the background (like the fact that the current strain isn’t airborne, an important issue that needed to be addressed constantly in the early months of the outbreak). I don’t see why we couldn’t do the same for every health article with “strength of evidence” bullet points.
Another simple change media outlets could make is to attach a grade to a given health claim by noting that it is based on strong or moderate or weak evidence. Even for readers and viewers who do not wish to trouble themselves with the fine print, news media can intimate the level of confidence one should have in a given health news item. Indeed, this is the approach taken by the US Preventive Services Task Force in issuing its various recommendations, not only for screening mammography but for prevention of falls in the elderly, the use of aspirin to stave off heart attacks, and much else besides. In all of these cases, the recommendations are given grades that are easily comprehensible to anyone who has survived public school: Grade A evidence represents a recommendation toward the left, “fairly certain” end of the spectrum, while Grade B indicates less certainty, and Grade C much less certainty.† However, all three of these grades still do recommend for something, while Grade D recommends against a practice because the evidence tilts against it on the whole, and so it is on the right side of the spectrum.
Recall that the recommendation for biennial mammography in women fifty to seventy-four was given a grade of B, while the recommendation for particular women aged forty to forty-nine for any kind of mammography was given a grade of C, implying that there was a moderate to significant amount of uncertainty as to whether there was any benefit at all for any woman in that age range, but it might be indicated for women at especially high risk, such as those carrying gene mutations that are known to increase the risk of breast cancer, such as the BRCA1 mutation.
The USPSTF assigns the grade of I to its true unknowns, where the evidence is so scant that to take any stand, however meek, would be an exercise in shooting in the dark. Looking through the USPSTF website, “I” statements aren’t found at every turn, but neither are they so rare as to stand out. Incidentally, that’s not a bad thing—not only is it an honest admission of uncertainty, but it is also an identification of the areas where quality research must be done.
It’s not that hard to see the intuitive appeal of such a grading scheme. Like sportscasters who explain the meaning of some clever maneuver to an audience that may include viewers new to a sport, health news reporters could gradually ease their audience into the levels of uncertainty in medical research by attaching such grades to every article they write or every TV segment they air. The additional benefit of this approach is that all the various items of health news then become linked by analysis about the quality of
evidence; news consumers can suddenly see the common theme of uncertainty in a diversity of stories, which applies equally to the latest newspaper report on a new test for Alzheimer’s disease, to a TV piece on the link between saturated fats and depression, and to an Internet webinar on new techniques for estimating cancer risks. This book has simply been an extended exercise in illustrating that point. In all of these topics, our state of knowledge is at varying levels, and making this matter explicit can only help people make better judgments and avoid the problems associated with the Just Trust Us model.
One small ray of hope has started to shine again on the media, for as of the summer of 2014, Gary Schwitzer has resurrected the HealthNewsReview and resumed his advocacy for measured reporting. One early review from the rebooted website centers on the news surrounding the latest entry in mammogram technology, so-called tomosynthesis imaging, and the glowing reviews that accompanied an important article published in the Journal of the American Medical Association. “The list of stories that resorted to sensational language—breakthrough, game-changer, best way of detection, any woman should have this—was long,” Schwitzer noted. He proceeded to itemize the ways in which caution was thrown to the wind: one story featured only one single patient anecdote, another interviewed the lead study author but sought no other expert voices, another made no mention of limitations, and so on.