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)

5 comments:

Carter's Daddy said...

Nice. I've been talking to some of my students about creationism, and (as you note) it's a similar kind of pseudo-science.

In my own life, I've had debates with a very smart friend who nevertheless uses a chiropractor as her family doctor. My sympathies were with her because of my suspicion/acknowledgment of the problems of mainstream science. But this impulse clashed with my worries about a chiropractor's scientific legitimacy -- i.e., my bullshit detector -- especially with their claims about "adjusting the spine," which is basically physically impossible. (If you really want to move a vertebrae, get in a car crash.) But of course you're right - just because the mainstream docs sometimes get it wrong doesn't mean you abandon standards of evidence.

s000z said...

I love everything about this except for the horoscope thing. Um, Rachel, you don't really take astrology seriously, right?

Katherine said...

Hi there, I found this article through Cedar's facebook link (I was his student at Mills and believe we've met once or twice).

I definitely agree with some of your points. Vaccines are important, and I'm aware that I could very well attribute my life to them (particularly the chicken pox vaccine, since I never actually got the pox as a child).

But the flu may be a little different than major diseases like malaria and polio. The flu does kill some people, but mostly those with already weakened immune systems. As someone who has only had the flu once or twice and never had the vaccine, I see no reason why this case should be any different.

Two more, non-science based concerns (this is an important distinction; I think some of the authors you cite, Mercola in particular, have a political rather than a scientific approach, so it may be unfair to call him in particular pseudo-scientific).

It is criminal, to me, that the vaccine is being required in some professions, yet the companies offering the vaccine have impunity from lawsuits. This is frightening, especially when considering the history of Guillain Barr Syndrome: http://www.dailymotion.com/video/x9mh9f_swine-flu-1976-propaganda_webcam . The comments to the video have an interesting debate on the nature of GBS itself.

Another thing that gets my attention is the present unavailability of it to the general public, and the promise of its widespread future availability. In effect, a high-demand commodity (and potential sign of status), when it becomes readily available, may not encourage the average consumer to do his or her research on the vaccine.

So, while the science may point to the positive effects of avoiding the flu, the social implications of pairing an eager public with a vaccine of wobbly merit seems dubious. I am a general advocate for getting to decide what happens with my body. I may be particularly susceptible to paranoia in regards to people making decisions about my health. I can't claim I'm well researched on this. It is very exhausting to keep track of the many arguments out there -- so I commend your ambition in taking on this issue.

Rachel Levy said...

Hi Katherine,

Of course I remember you--Cedar speaks very highly of you. I appreciate your reading and, even more, commenting on my blog. It's not often that anyone does either of those things.

Before I go on, I want to encourage you (if you haven't done so already) to make sure that you read each of my three posts on this topic carefully and more importantly, that you read the links within those posts. It's a very complicated subject and I don't pretend otherwise. You'll also see through the links how my thinking on this subject has been formed. That is part of what this blog is about, sharing my intellectual and writing processes.

I have not claimed certitude about either the flu or H1N1 vaccines, and of course, the flu is different from a disease like polio (I have also stated this). I don't know enough about those vaccines and how they work to make claims about their safety or effectiveness.

My main points in these pieces are that a) there's an ethical dimension to whether we vaccinate or not (polio or flu) and b) how should science-and-medicine ignoramuses such as myself inform our decisions on these matters.

For healthy people like you and me, getting the flu vaccine isn't necessarily for us but to protect the vulnerable and immune-suppressed among us. I don't usually have flu shots, but I did when I was pregnant to protect the baby. I weighed the risks of having the vaccine versus not having it and decided to have it. I think I made an ethical as well as well-informed decision. I would hope that other parents and people who have to make these decisions would make them much in the same way, based on the science available, but not based on the claims of pseudo-science.

Mercola may have expertise in nutrition and other health matters, but he is most certainly guilty of promoting and practicing pseudo-science. There's nothing unfair about saying that. Perhaps he has a political approach, as well; the two aren't mutually exclusive.

I would say that the flu vaccines are unavailable to members of the lower risk populations. Has a false shortage been created, as you imply? Maybe. I have not seen proof of this. Will the consumer want it all the more because there's a shortage and it's in high demand? Perhaps. But that's an issue of consumer behavior and has nothing to do with the science behind vaccines or the value of the scientific approach. Furthermore, entities like the C.D.C. would be no more responsible for causing rushed and uninformed decisions than the consumers would be themselves.

The 1976 cases of Guillain-Barre Syndrome related to the flu shot seem to have been proven; that's angering and I can see how they would have sown mistrust. Even having vaccines and shots that have been proven safe can be nerve-wracking. I say a prayer every time one of my own children are due for vaccinations. But 1976 was thirty-three years ago and looking at these sources, I'm not sure the 2009 vaccine is the same one:
http://www.cdc.gov/FLU/about/qa/gbs.htm
http://www.cdc.gov/ncidod/eid/vol12no01/05-1007.htm.

So, I'm not sure the vaccine is of wobbly merit. Perhaps it is, perhaps it isn't. I'd have to see current scientific findings about this and not an out-of-date segment from 60 Minutes.

My point is to let the scientists decide this and not pseudo-science, rumors, and intuition. I am also a general advocate for getting to decide what happens with my body, but if what I decide could hurt someone else, then it's not just about my body, is it?

Cedar said...

First, Rachel is kidding about the astrology, but I think had some superstitions about it when we met. I think her earlier tendencies make her an excellent advocate with scientific thinking; the zeal of the converted and all that.

I also have had talks with my students about creationism, and pseudoscience masquerading as psychology. We seem to get a lot of that, so part of my job is that students get out of a psych major knowing the difference.
However, it is important to acknowledge that this is a real uphill battle.
Scientific reasoning is unnatural. Scientific, probabilistic logic and statistical reasoning processes are not "common sense" but often operate counter to what our intuition tells us. Biases and illusions such as base rate neglect and the availability heuristic are powerful, come naturally, and are hard to unlearn.
Further, the pseudoscientific use of anecdote is powerful and compelling, even to many doctors.

Mercola is absolutely a pseudoscientist. Just looking at his own website makes it clear to me, without having to read about the various debunkings, rebuttals, etc that I am sure exist out there. He is selling various pseudoscientific products, ("Energy Psychology? really?) vitamins, etc. His publications listed seem to be editorial comments on other research, rather than empirical research of his own.

I also have distrust of corporations, some desire to determine what goes in my body, and a concern about the political consequences of this lawsuit immunity. However, I really don't think this is a conspiracy, but a carefully contemplated and debated public health decision by experts in public health. Frivolous lawsuits can cost millions in and of themselves, but also needlessly undermine the public confidence in public health decisions. This has already happened with the MMR vaccine and thimerosal, when they decided to remove thimerosal (yes it is a form of mercury, but a different kind, witness how we non-biochemists see "mercury" and automatically assume poison) from the vaccines, despite evidence that it was safe. Pseudoscientists declared victory, and then promptly found some other reason that it is supposedly causing autism.
So, I think while it is confusing for us to google "swine flu vaccine" and then try to make sense of what comes up, our best course of action is to trust the modern public health system to make the best decision with the best evidence. In these cases at least, I think the people in charge actually have the expertise and the evidence necessary to make the best call. This does not mean that it is going to be perfect, but that it will be far better than if a panel of random citizens were on some committee trying to figure it out.