Thursday, March 7, 2013

Why Do I Do This?

The other day, I received an email from someone via my other site, asking why I do this. Why do I speak out against anti-vaccine myths and put so much time and effort into that site (and this blog), when I state I have no financial ties to any pharmaceutical companies. Is it just a "labour of love because [I am] concerned for humanity"? Where does my passion come from? What intrigued me about this was that it came shortly after my experience with the Vermont Digger and the Vermont Coalition for Vaccine Choice, the latter of whom, along with Laura Condon of the National Vaccine Information Center, accused me of being a Pharma ShillTM and/or paid by Dr. Paul Offit. And certainly there are hints that the non-vaccinating individual who emailed me suspected that, my honest statements notwithstanding, I really was paid to write and comment.

Just to reiterate, I receive no money or any other compensation from a pharmaceutical company to write about vaccines in any manner. I hold no stocks (unless there happen to be some in the mutual funds in my retirement account, over which I have no control). I receive no checks, dinners, or quid pro quos. A kind fellow by the moniker Eric TF Bat kindly provided me with hosting space on his domain for my AntiAntiVax site for free after several fellow commenters at Phil Plait's Bad Astronomy blog recommended I turn one of my comments into a web site so people would have a permanent place to point people to when countering anti-vaccine myths. I don't know Eric outside of that context. As for my blog, well, it's hosted by Blogger (clearly), which is also free. I have paid for my domain name out of my own pocket. And I use my own free time to write. Some people garden. I blog. So there's my financial situation regarding my countering of myths and misinformation regarding vaccines. I don't get squat, and I would not accept any money from a pharmaceutical company, either, even if they offered it to me.

So, if I don't get paid, why the hell do I do this?

I didn't just jump into this, legs pumping and guns a-blazin'. Rather, I sort of grew into it, which I think is how it goes for a lot of people. I certainly wasn't what I'd call a "skeptic" until after I was out of my teens. People posed challenging questions. They got me thinking more critically. The most valuable thing that I learned from those encounters was to question not just those with whom I disagreed, but to critically examine those things that supported my own beliefs. Were my beliefs well-founded on valid evidence and logic, or were there spurious rationalizations I used to make me feel better about myself and what I believed? Most importantly, why did I believe the things I believed.

In some instances, I found that my views had a pretty firm foundation. In others, I discovered, to my own chagrin, that I stood atop a fragile house of cards, and critical inquiry brought me tumbling down. Some of that was my own doing. I misinterpreted the things I perceived. Some of it came about by being misled by others. I think that was what really got to me: being duped. No one likes being taken advantage of, and when we discover that we've been had, we may feel angry, embarrassed; we might try to rationalize to protect ourselves ("Oh, he meant well. He didn't actually intend to mislead me."). I accepted that I had been misled, that I was not careful enough in my evaluation of the evidence. And yes, I did feel embarrassed and angry: angry at myself, angry at those who tricked me. I didn't like that feeling. And I felt it again when I saw others in the same situation, being misled, lied to. Even more so when it involved those who were less able to fend for themselves, whether through age or illness.

That's what led me to scientific skepticism and places like the James Randi Educational Foundation (whose Swift column I used to read when James Randi himself wrote it). Primary among the topics I read were things like UFO claims, bigfoot, ghosts, psychics and so on. While it's certainly important to address the types of thinking behind those beliefs, to me they were more of an amusement, but didn't hold much of an emotional interest for me. But occasionally I would also come across discussions of medicine and public health: both in regards to pharmaceutical companies and "alternative medicine" claims.

That grabbed me. False claims about medical products, regardless of source, really did not sit well with me. It's one thing to bilk someone out of their time or money, but to do that and jeopardize their health... It made me want to find some way to make sure that the medical products that make it to market actually work, that they're safe (meaning, the benefits outweigh the risks) and that what they do actually has a meaningful effect. So I studied drug and device regulation. I learned the history of the Federal Food, Drug and Cosmetic Act, the process that drugs and devices go through, research ethics, regulatory guidances and requirements.

As I studied, I gradually went from wanting to work in the regulatory and development field to focus my interests on ethics. My studies and side reading gradually exposed me to the anti-vaccine movement. I had never even known that there were people who believed that vaccines not only did not work, but that they were horribly dangerous, at least not in the U.S. Sure, I'd heard of patently ridiculous arguments in Third World countries, but certainly the U.S., European nations and other developed countries were enlightened and not prone to such nonsense, right? I admit, with shame, my naivete and ethnocentrism.

When I first heard claims that vaccines cause autism, my initial reaction was mild disbelief, but I looked into the claims. I read their sources and examined the quality of the evidence presented. It rang hollow. What I noticed was how much the claims rested on personal stories, prone to all the human foibles I'd come to recognize in my earlier thinking and in many of the common skeptical topics: confirmation bias, confusing correlation with causation, recall bias and faulty memory, all those things that we try to minimize through scientific methods, like blinding, randomization and so forth. The stories I heard were certainly emotionally compelling, but when looked at with a more detached, objective eye, it quickly became apparent that no reasonable conclusions could be drawn from them. There was too much that was unknown about each case; there were too many variables not accounted for.

So I turned to the scientific literature. What did it have to say? Was there anything there that suggested a possible connection between vaccines and autism? What about claims that the diseases really weren't serious or anything to worry about? The more I looked, the more I found that there was no valid evidence supporting the anti-vaccine claims. Moreover, I quickly found many of the claims weren't simply unsupported, but that they were in direct opposition to observable facts!

At the time, I primarily hung out over at Phil Plait's blog, and any time he posted something about vaccines, without fail there would be people coming in, trotting out the same anti-vaccine arguments over and over again. Where were these people getting their misinformation? I wondered who was promoting these ideas. It seemed rather unlikely that the same arguments, sometimes even word for word, could come about independently. And that's how I learned about organizations like Age of Autism/Generation Rescue and Barbara Loe Fisher's National Vaccine Information Center. These were (some of) the sources of the myths.

That anger I mentioned earlier came back, but not for myself. I felt anger for those who were being misled with what might charitably be described as reality-challenged claims. I generally don't particularly care what someone decides for their own health, or how they spend their money. I may not necessarily agree with them or think they are taking the wisest course, but, their body/wallet, their choice. I have much less sympathy for those who promote misinformation. And vaccines are somewhat different from, say, a quack device like Power Band bracelets or homeopathy. It's bad enough to endanger someone's health by convincing them to take some course of action that, at best, is a waste of time and resources, and at worst has severe health consequences restricted to the individual making the choice. But a bad decision about vaccines affects more than just the person choosing to get or refuse an immunization. It affects them, their family, friends, neighbors...anyone with whom they come into contact. We have seen time and time and time again that when immunization rates fall, disease rates all too easily increase, sometimes to serious effect. This sort of misinformation created a ripple of negative outcomes for public health, and was particularly dangerous for those at greater risk of complications from disease.

And I think that's really where my passion comes from. When I think of the vulnerable whose health is being put at risk because people are misled into believing that vaccines are universally bad, my heart breaks. I think of my friend who is on immunosuppressants so his body doesn't reject the donated organs that now mean he isn't in the hospital every couple weeks from the ravages of severe diabetes. I think of my parents, who are getting ever nearer to the age when the immune system starts to decline. I think of the aunts and uncles that I never knew, because diseases that are now preventable killed them in infancy. I think of my friends' infant children, and my coworkers who are new parents. During my commute to and from work, there are no signs above people's heads letting me know who is and who is not going to be severely affected by a disease. What about their families?

Those are my personal connections to this issue. They are the reasons that I speak out, that I challenge the claims of anti-vaccine activists. I don't do this out of greed or avarice. I don't do this to get some sort of personal benefit. I do it because I care about others. I do it because people deserve to base their choices on accurate information.

So there you go. That is why I do this.

2 comments:

  1. Wow! Much of your process mirrors my own growth in skepticism. Thank you.

    ReplyDelete
  2. I think a lot of skeptics probably have similar stories. I know there are a lot who were "always" skeptics, but my suspicion is that a lot of people tend to progress gradually into it, starting with having someone challenge a belief they hold as true.

    ReplyDelete

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