Another Haiku on Politiku, a Clarification, and a Brief Follow-up

A few follow-ups from my last post:

1) Another haiku of mine is up on Susanna Speier's Politiku. Exciting! This one is about, you guessed it, the H1N1 virus and vaccine. I even got to work a bit as a co-editor with Susanna on her post and haiku choices.

2) It may seem from the following paragraph in my last post that I am equating other types of medicine such as chiropractic adjustments, massage therapy, and acupuncture with pseudo-science:

"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."

With poor clarity of ideas and poor organization in that paragraph, I can see how that would come across. What I meant to say is that while I am suspicious of products that toot their "all-natural-ness" specifically for the purpose of marketablity (and not because there's some proven health benefit to their having that quality) and while I don't agree that "all-natural" medications are automatically superior to "non-natural" ones as many consumers seem to believe these days, I think that there are some unconventional (and often non-western) medical treatments, practices, and ways of healing that are valid and even superior in some cases to those conventional western medicine has to offer. Moreover, western medicine has a lot to learn from the emphasis of those practitioners on maintaining health and preventing illness first and foremost over simply reacting to illnesses after they happen. That being said, I believe that it is unprofessional, unethical, and irresponsible when and if such practitioners advise their patients to entirely renounce conventional western medical treatments, especially ones that have proven successful.

There are places where science and medicine diverge. My concern is with medical and health practitioners who claim their treatments and protocols are valid according to the scientific approach, when they clearly aren't. Science, unlike art, is not a malleable concept. Unlike beauty, science is not in the eye of the beholder. To me, science doesn't seem to be a relative term. More on this later, maybe . . .

3) This New York Times article is about a case where scientists are advocating for fewer tests and procedures, less spending, and less medical intervention, based not an any political or economic agenda, but on findings from research. These findings show that the benefits of the current testing protocols may not be worth their cost and the harm they cause. This article also illustrates the divergence between medical scientists and practicing medical doctors. I can see how women's groups would see this recommendation as an attack on women's health care, the advancement of which has been hindered by discrimination against women, and I acknowledge the influence of politics and economics on medical science, but I don't think that's what is behind these particular findings.

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)

The Great Vaccine Follow-up (and Swine Flu too!)

Since my last post, "The Great Vaccine Debate," (which was spurred by a recent article in Slate about the dangers un-vaccinated children pose to children and adults with suppressed immune systems) I have received some interesting feedback and comments, which I thought I would share. I continue to think about the dimensions of the issue myself. I've been watching a lot of The Daily Show lately and Jon Stewart's persistent criticism of mainstream media television outlets, such as Fox, CNN, and MSNBC, is that they boil down news and current issues to two sides squaring off against each other, giving each side equal weight. This seems to be happening in the vaccination issue as well. People think that both sides are equally (scientifically) valid and that whatever people decide should be respected by the other side. First of all, there shouldn't really be sides here as much as claims that have qualities and quantities of evidence. Second of all, many of these same people (on the far left, at least) wouldn't agree that there are two valid sides to global warming or to abstinence-only sex education, for example, and would see deniers and abstinence-only zealots as being anti-science. But being anti-vaccine is being anti-science in a very similar way. Also, not vaccinating against infectious diseases means deciding to put vulnerable people and public health at risk and that's, well, dangerous, and very hard to respect.

Here is what other folks had to say:

The author of the article, Stephanie Tatel, sent me this quote from one of the parents on the pediatric leukemia list-serve she's on, referring to her son who finished his chemo treatment, "My son is permanently immune deficient. He also has autism. I will run for the nearest vaccine, anytime. Hysterical vaccine worriers have never sat by their child's bedside, unsure if he would make it through the night. "

One friend who is very active in the pro-natural childbirth, pro-breast feeding and pro-local food worlds told me, "The broader discussion of vaccinations is fascinating, for the reason you cited: why is it that rational, educated, smart people refuse to believe science? So often I hear the argument that our bodies know how to fight off disease, which is similar to the argument I've told mothers about drug-free childbirth. What is getting missed in that discussion is that people for thousands of years died from those diseases: their bodies cannot fight the bugs all the time. And while most of our bodies can birth children naturally, I've yet to meet a mother who would turn away the skills of modern medicine if and when she has a complication. I've never heard of someone refusing a midwife's decision to transfer, for example. Sadly, the group that tends not to vaccinate also tends to be the pro-breastfeeding, pro-natural birth, pro-organic, local food group. I often feel that I'm in an awkward place within my local circle--seeing otherwise smart people make a poor choice because one issue is closely bound with others that they believe in. How to get them to broaden their view? This article is a good start. Otherwise, talking, talking, talking."

Another friend who is a resident in internal medicine at a major research hospital said, "As you can imagine, I have many discussions with patients regularly on what they do or don't want to take and the value of scientific literature. The question of community good is another level that doesn't usually come into play but adds another level of complexity and importance."

A science and environment journalist said, "There is nothing like wading into the whole vaccination debate to get the blood pumping. Take it from me, the person who gets to write about things like this, climate change, autism, stem cells, plus a whole host of other scientific issues that get people all riled up and emotional. Rationally presenting facts does nothing in many of these circumstances."

But I feel a stubborn need to keep rationally (albeit sometimes emotionally) pushing paying attention to the facts. This past week, I got into some conversations on facebook about the flu and H1N1 vaccines, and since I was fresh from this other debate, I was chomping at the bit. This vaccine is new and and I think people are right to question its safety and effectiveness. There is good reason to suspect the big pharmaceutical companies. In these matters government institutions can be inefficient and incompetent, and also inappropriately influenced by the drug companies. I'm not saying we should all rush out and get the H1N1 or flu vaccines without careful consideration. But that doesn't mean we should give in to pseudoscience and misinformation, either. We should think critically about these matters, but get our information from reliable sources with the goal of making informed decisions.

I'm not quite sure why I am wading into all of this; I am no scientist. I got my worst high school grades in science courses and in college while taking an introductory chemistry class, I did a little science experiment of my own. Problem: Can I pass this class? Background Research: The class is known for being easy and straight forward. Hypothesis: Yes, I can! Experiment: Take two exams; study for the first and not for the second. Results: Only a few percentage points higher on the one I studied for, but failed both. Conclusion: No, I can't, especially if I'm too lazy to do the (granted, low-weighted) homework assignments or go to the TA-lead help sessions. Other than conducting some amateurish social science research and taking a statistics-for-teachers course during my master's degree program (and those were my least favorite parts of the program) in education, I have no background in science or social science research. I am susceptible to being overly influenced by emotional and irrational fears and conspiracy theories, especially if they are well presented. All that being said, I have been raised to consult with the best evidence, thinkers, scholars, professionals, experts, and researchers to get at the truth and to make the most informed decisions possible (and to research the sources before I consult with them) about how to vote, how to eat, how to treat illness, how to raise my children, how to spend money, how to maintain good health.

This article by Russell Blaylock, M.D. spurred one of the discussions about the H1N1 vaccine. I flipped out when I started to read it, but then I stopped and asked my very rational, scientifically-trained, smarty-pants husband to read it and let me know what he thought. Here are his thoughts, "Some of his points are no doubt true. And the flu vaccines (seasonal or H1N1) are a different issue than the other vaccines, for which there is near absolute medical consensus. But he is cherry picking the evidence, and accepting certain studies which confirm his viewpoint, while not accepting others that don't, and then distorting the evidence. The NIH and NEJM are pretty clear now that the vaccine works, maybe not as well as the other vaccines, and maybe the consequences of not taking them aren't quite as strong (H1N1 does not seem to be lethal like polio). But according to this study, it still works."

Cedar also pointed out that Blaylock has insurmountable credibility issues, "He is a total wacko right-wing nut job who thinks that the Soviets invented crack cocaine, MS is caused by aspartame, and that his special vitamins can prevent your brain from aging. You should read his Wikipedia page, but not for the page itself, but for the fantastic links to some of his more bizarre writings." The last thing he told me was that the web site that the article was published on was an organization founded and chaired by Blaylock, which lacks any peer review or oversight. The article is well written and sounds authoritative, but it's all him; there's no scientific or medical consensus behind what he's saying. There's no consequence to him if he's wrong, whereas major publications have at least some vested interest in being balanced and supported by solid evidence.

Another facebook friend posted this You Tube video featuring Dr. Rauni Kilde's thoughts on the swine flu and its vaccine. This, too, freaked me out until I realized she was not actually speaking cogently and until I read about her background and figured out the woman was in a serious car accident and suffers from mental illness.

I am disturbed by the number of people who are willing to accept the ideas of people like Blaylock and Kilde without question and by how quick they are to distort the arguments of those who do question or attempt to refute them. With access to the internet there is so much information that is so quickly available on any given topic. In turn, it's quick and easy for us to spread that information around. This is a wonderfully liberating development in many ways, but it is also dangerous. We need to make extra certain that the information we're reading and passing along is reliable and that it has been vetted. Consulting with professionals, experts, academics, journalists, and (qualified) bloggers is essential. And we need to vet those folks, too. When it comes to topics like the vaccines, we should be skeptical and ask questions of our scientists and government, but in that case we need to be skeptical of the skeptics, as well. This piece from NPR's Weekend Edition gives an excerpt from New Yorker science and technology journalist Michael Specter's new book, Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives, represents both what I'm trying to get at in this piece and also may be an example of a reliable source. I say "may be" because I'd have to read it or what a New York Times book review has to say about it first.

Speaking of reliable sources, I found that these were worth consulting on the subject of vaccines:

1) The Children's Hospital of Philadelphia has a great Vaccine Education Center.

2) a recently published article in Wired magazine on vaccine hysteria.

3) this conversation about the hysterical public reaction to the death in Britain of a 14-year-old girl, and the media's role in that, who coincidentally had had the vaccine for cervical cancer immediately before she died.

4) an article in Wired on the history of vaccine panic.

4) this article about the flu and H1N1 vaccines in the Atlantic.

5) this recent opinion piece in the New York Times advocating for the consideration of gender differences when producing vaccines (H1N1 and otherwise).

Please let me know if you know of any others. After this, I plan to return to writing about politics, education, and food. This commentary by Mike Rose in truthdig about ill-conceived trends in education reform is a good place to start, or you can read about the infinitely important topic of salad dressing on my food blog.