Thursday, November 12, 2009
The Accidental Science Advocate
While Cedar is ensconced at the Mayflower Hotel this weekend attending an A.P.A.-sponsored science advocacy meeting in D.C., I'm at home ensconced in my wobbly-backed, duct-taped office chair playing single mom to our three young children and doing bootleg science advocacy, and seeing if I can synthesize these three blog posts plus pages and pages of notes and e-mail exchanges into a succinct and presentable essay about vaccines, distrust of the mainstream medical community, pseudo-science, and the like. (I can't seem to stop thinking about all of this, but I am telling you, scientists and doctors, I will soon go back to being primarily a cranky mother and solicitor of rejection letters. After this, you're on your own and I return to reading my horoscope every day!) At least my mom is here to help out, correct my grammar, and tell me my blog entries are way too long.
First things first. In my last post, I plugged this article in the Atlantic as a good source on the swine and influenza flu vaccines. That may have been premature. It's still better than anything Russell Blaylock has to offer on the subject, mind you, but according to my peeps over at Effect Measure there are some definite errors in journalism. Please don't ask me exactly what those folks are talking about because I have no idea. I'm not literate in science-geekese, particularly not when it's spoken with a strong epidemiologist accent (yeah, like I even found that blog myself). I also found that this recent book review by New Yorker journalist Elizabeth Kolbert does an excellent job of addressing the topic of "all the information out there" (although she doesn't include the example of vaccines).
As a result of my last post, I have been sent to wade through some more anti-vaccinators, such as Kent Holtorf, Jane Burgermesiter, Gary Null (the producer of the self-funded documentary Vaccine Nation), Joseph Mercola, and a video from the National Vaccine Information Center. Honestly, they all scared the crap out of me. Which is good because it meant that after I had listened to them, I figured out why I shouldn't have. Plus, like Mrs. Anders, my favorite middle school substitute teacher, taught me when she made me argue on the pro-life side (for the record, I prefer anti-choice) of a class debate, it's always a good experience to challenge your own knowledge and beliefs, and to see another perspective. Now that I've done that, next time they come at me, I'll know right away to clap my hands over my ears and sing loudly Thomas Dolby's "She Blinded Me with Science."
Like Russel Blaylock and Rauni Kilde, most of these people have absolutely no real medical or scientific credentials, and they are neither trust-worthy nor credible on matters such as vaccines. Kent Holtorf was labeled as an "Infectious Disease Expert" by Fox News when he blasted the swine flu vaccine (not to mention he was a contributor to Fox News). Meanwhile, he's not even certified in internal medicine according to reddit.com, a good skeptic site. Joseph Mercola also nixed the swine flu vaccine, saying that a good dose of Vitamin D would do the trick. On her site, Jane Burgermeister invites believers to donate to her "criminal legal fund," which she ostensibly uses to sue organizations like the United Nations. Quackwatch (the name alone makes me giggle), my favorite pseudo-scientist-busting site, gave me good reasons to doubt the claims of Null and Mercola. I didn't explain this in my previous post, but just so we're clear, pseudo-science means fake science. It's not a field within science, like earth or life science.
This brings me to a key point, which is not that these people are nut jobs or astute profiteers or not credible, but that their claims are not part of a scientific dialogue and in this way, they are disavowing the scientific approach. The views of pseudo-scientists are not a legitimate "side" in any scientific debate. In the arts and humanities, it is possible to be isolated from one's field and still contribute to knowledge, but science doesn't work this way. And these folks don't even study natural medicine; they sell it. They have a vested interest in getting us to distrust the mainstream media and medical community, so that we'll buy their vitamins and products, and are just as motivated by greed as the big pharmaceutical execs. And they're not merely controversial, they're frauds. Their research may be slickly presented, well-written, and full of compelling anecdotes, but it's not scientific research. They have done absolutely no studies at all to prove their claims or that their own treatments work; they are accountable to no one, and there is no oversight or peer-review over their "research." I accept that some of these folks have some expertise in nutrition and living healthfully, but I whole-heartedly reject pseudo-science. I don't accept the "scientific" views of Christian fundamentalists or Scientologists or televangelists, either.
People admire Burgermeister and Koltorf because they supposedly speak truth to power. They may be speaking to power, but they ain't telling the truth. When health care entrepreneurs promote their products, saying that they can cure cancer, advise people who are HIV-positive that there's no way they can contract AIDS, and discourage people from using fluoride toothpaste, they are being irresponsible and dangerous, and obscure any real expertise or credibility they may have. And they contribute to a false dichotomy between promoters of common-sense good health measures (which most members of the mainstream medical community are) and the scientific and medical community.
This video by Richard Dawkins.net does a fantastic job of explaining what I mean by the scientific approach, although I must renounce their clumsy association of superstition with Native American rituals. You're not furthering your cause this way, scientists. I know you people are socially awkward, but do you really want to be culturally awkward as well?
So, why are people turning to pseudo-science to help inform their medical and public health-related decisions?
For one, there is deserved suspicion of the pharmaceutical companies. But while those companies and other health care companies have certainly earned that distrust, as this Gawker post by Foster Gamer and recent New York Times article about recent price inflation show, I'm not sure that the scientists who work for those companies have, or that all the doctors who prescribe medication have, either. In general, the paranoid thinking about this is too simplistic; it implies that the government, research scientists, medical doctors, and pharmaceutical companies are a monolithic entity, when in fact, none of those four groups alone even operate as monoliths. Furthermore, greed is always a motive, but the truth is profitable too. Look at the success of Prozac and Viagra. If those were ineffective or if they were ever found to be dangerous, those companies would lose buckets of money.
Natural medicine is all the rage right now. Part of this is simply brilliant marketing--"all natural" products and curing our ailments "naturally" sounds instinctively more purifying, wholesome, healthy, and safer than the "un-natural" alternatives. Herbals and vitamins can be key to good health and there are conditions, like chronic back pain, that conventional western medicine doesn't handle well and that chiropractors, acupuncturists and massage therapists handle in much less invasive and less medicated ways. But many pharmaceuticals are made from herbs and ingredients found in nature. And natural doesn't mean safe: poison ivy is natural and so are rattle snakes and so is hemlock.
The all-natural movement includes the belief that our society over-medicates, that many of the diseases that we're vaccinating against are harmless, and that we should stop vaccinating so that our immune systems can learn to fend for themselves. I agree that as a society we over-medicate, but that is a separate issue from vaccines. A vaccine isn't really medication. Yes, we need to build our immune systems up and yes, we should avoid antibiotics as much as possible and in general expose our kids to colds and other viruses, but those infectious diseases can be really, really dangerous. I had chicken pox and I am not worried about my own children getting it and bouncing back, but chicken pox can hurt or kill immune-suppressed members of our communities. In any case, I don't think the infectious diseases we vaccinate against in childhood are as harmless as some think they are. Unscathed survivors in our parents' and grandparents' generations were lucky. Plenty of others weren't so lucky, including my uncle who has one leg shorter than the other and my aunt who is deaf in one ear, not to mention all of the people who were killed by the likes of German measles, polio, mumps. Look at how many people malaria (an infectious disease against which there is no vaccine) hurts and kills every year. Finally, vaccines are designed to strengthen our immune systems, not to weaken them, so the idea that we shouldn't have vaccines because they'll weaken our immune systems isn't logical. Vaccines just allow us to build up our immune systems minus life-threatening diseases and massive public health crises.
Many people have had negative experiences with the mainstream medical community (I know I have) and that community has understandably lost their trust. In some cases, doctors practice bad medicine, turning to hefty drugs and surgery when there are less invasive and more cost-effective treatments. But most doctors encourage their patients to eat sensibly, exercise, get enough sleep, and avoid stress and smoking. Unfortunately, some people get severely ill despite maintaining a healthy lifestyle; they can't be treated or cured by common-sense good health measures and vitamins alone.
In other cases, doctors aren't responsive to patients' or parents' concerns. For example, following a well-child visit and some vaccinations, my son Caleb was running a fever, had a bad diaper rash, wasn't sleeping, was crying a lot, and we were having trouble consoling him. I called the on-call doctor from our pediatrician's office and found myself talking to a very exasperated man. I was very upset by the way he spoke to me and reacted to my concerns, and I wrote a strongly-worded letter to the practice the next day. It wasn't that he was wrong or that what was happening with Caleb had anything to do with the vaccine or that even if it did that it was cause for medical concern; he was just an asshole. But our frustration should be with medical training that neglects bedside manner and empathy, and not with the science behind vaccines. In cases such as these, doctors should first respond to our concerns and reassure us, and then present us with rational facts, rather than handle the situation with patronizing dismissal.
In other cases, patients and parents are frustrated with uncertainty. Medical doctors are trained as scientists and as such, can speak in vague probabilistic terms, which can come across as uncertain and uncaring, but patients want certainty in answers, diagnoses, and treatment plans, and doctors don't always have that. Pediatricians behave as they did with me because there's absolutely no evidence that vaccines cause certain reactions, and scientific evidence, and not hunches and intuition, is what doctors are trained to consider. When parents want to know definitively why their child has gotten severely ill, isn't developing normally, or has autism, and vaccines are an easy target. (An aside: I don't actually think that the incidence of autism has gone up; rather, its diagnosis that has gone up. The boundaries of an autism diagnosis used to be narrow and now they're vast, so it seems like autism is on the rise, but relatively speaking, I doubt that it is. Jody Becker shed some light on this in her October 2009 article in the Atlantic: “Behind the Autism Statistics.”)
When doctors are poorly trained, arrogant, or don't have the answers, it's easy to run into the arms of reassuring and confidently certain pseudo-scientists. It's easy to mistake the uncertainty for incompetence and the dismissal for dishonesty. But in those cases, we should seek out more knowledgeable and empathetic medical professionals, not vitamin salesmen. We need to vet our doctors, to get recommendations, to research them, to choose them carefully. And if they're not practicing sound medicine, or lack a bedside manner, then we should go elsewhere.
Scientists and doctors have a way of communicating that's unsettling and turns their patients and the public off, but before we dismiss their findings, we should consider how scientists think and talk, and then place their findings and comments in their proper context. I am not saying we shouldn't question orthodoxy, be skeptical of public health officials or the pharmaceutical industry, or choose our doctors carefully. But there are plenty of scientists and medical doctors with relevant expertise who challenge medical orthodoxy, but in a legitimate way. And they give their kids vaccines, and many are just as paranoid and just as concerned about their kids' health as the rest of us are. Some examples of doctors (and excellent writers) who challenge and work to improve the practice of mainstream medicine while holding fast to the scientific approach are: Jerome Groopman, Atul Gawande, and Marcia Angell.
I have a happy ending to this tale of accidental science advocacy. A reader I had been wrestling with over this topic ended our conversation recently by sending me this article about the history of the vaccine and autism scare, telling me what a great resource it is. I'll remember this pay-off next time I shoot a manuscript out into the black hole for the umpteenth time. Hopefully, that same persistence and stubborness will pay off then. In the meantime, I may not always understand science, but, and some scientists may roll their eyes at this, I have faith in it.
(photo by Justina Kochansky, flickr username: Articulate Matter)