Friday, July 12, 2013

Nuancing Jenny McCarthy (long post)

One of the challenges of opinion writing, and one of the reasons I started this blog, is that one has to compress complex issues into 800-1200 words. Even in this age of virtual publishing, that seems about the right length. As a result, sometimes things get compressed. With the blog, I can expand on sub-themes that interest me and include text I cut.

1.On multiple social media sites, including this blog, I've received a certain amount of pushback on the following sentence, "Religion and science equally fuel this kind of fear-mongering and reckless parenting."

It was not my intention here to raise a false equivalence between religion and science, but to evoke a true equivalence between the epistemology behind certain kinds of leaps of belief. The Neumanns, inspired by vague religious sentiment, made a leap to believe that this time they ought to just pray, SURE that it was true. The child died. McCarthy and other anti-vaxxers followed a similar process in leaping to their beliefs. There's something deeper here about the human psyche and how we come to hold our beliefs.

I actually spent a few minutes chatting with a theologian this morning about how Catholics handle faith healing. He talked about the way that Catholics believe in grace and the possibility of miracles, but that grace proceeds from nature and from works. So if you want grace, you pray, but you also do whatever you can do in the world. This is true for medicine, but also for work, love, sports, whatever.

2. I also received a number of emails and comments from people wanting to engage in thoughtful, data-driven, discussions about vaccines from a negative viewpoint. One quoted some studies that related the cost of the HPV vaccine (it's not cheap) to the numbers of cervical cancer cases prevented, and suggested that the numbers weren't good. Did we really want to spend X million dollars per case prevented, the commentator asked? This starts to take you into tricky ethical ground, but was at least a reasonable place to have a discussion.

The more complex comment came from L., who asked me not to use her name. She seems to have had a debilitating reaction to a flu vaccine that has been diagnosed as CIDP and MMN (Chronic Inflammatory Demyelinating Polyneuropathy - MMN is a Multi Focal Motor Neuropathy). It may be life-long and it may take very expensive drugs to control it. She has serious questions: Was this in fact caused by the flu shot? Is her predilection for the allergic reaction genetic, so should she not get any offspring vaccinated? Why, she asks, is research on her kind of reaction not being done by outsiders as opposed to industry scientists? She talked about "vaccine court" and its problems. In short, this was a powerful email.

I responded as follows:
Dear L.

I'm very sorry to hear about the medical ordeal you are going through; it's terrible to be so abruptly thrust from a "normal" life into the world of disability. It shocks one's sense of self and forces all kinds of recalibration of meaning and value. At least, that's my experience.

That said, if what you want is nuance and more study, which seems entirely reasonable, Jenny McCarthy is not your friend. She's a peddler of  fear and quackery - and if from time to time she says something reasonable about further study, it's drowned out by the roar of mis-information.

Let me show you a paragraph I had to cut from the essay for space reasons, and because I didn't want to spend all my time lambasting her absurd statements.

Here’s an example of McCarthy’s arguments. In an article on CNN, writing with (now-ex) husband Jim Carrey, she trumpets her son’s cure of autism. They write, “Evan has been healed to a great extent by many breakthroughs that, while perhaps not scientifically proven, have definitely helped Evan and many other children who are recovering from autism.” Later, they specify, “We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines.” Finally, they wonder why doctors haven’t come to study their miracle boy, and so begins the conspiracy, “So where's the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven't arrived. Most of the parents we've met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child's autism. We think our health authorities don't want to open this can of worms, so they don't even look or listen.” McCarthy repeated this message on air and in print and through her charity, Generation Rescue, again and again and again. Then, in 2010, she began to admit that maybe Evan didn’t have autism, maybe vaccines weren’t to blame, but vaccines needed to be studied and she began suggesting alternative schedules (based, again, on no data).
These things are just not true. If you follow the link, you'll see she just makes the claim that autism is environmental. That Evan's autism was caused by vaccines. That diet and vitamins cure him. That there's a government conspiracy. This is just a useful catch-all of her errors (I suspect she believes them, so I don't use the word lies), but can be found again and again and again on the web. So now she's inventing alternate schedules of vaccines, because, well, because she's a believer. Did you read the link off my article about parents of kids with autism feeding their children bleach?

That's the culture that McCarthy enabled. - bleach - McCarthy hosts a conference for quacks and frauds: Including Wakefield.

So yes, she's backed off some statements, but she's right at the front of the line to inspire "cures."

McCarthy creates a world in which you and your cause are harmed - because any attempt by someone smart and reasonable, like you, to say that we should look at vaccines more carefully places you on the side of the snake-oil salesmen like Wakefield, and the celebrity enablers like McCarthy. Remember - Wakefield was trying to sell an alternate vaccine, so fabricated his study in order to profit, and now children are catching measles again ... and he's still doing it. And it's true, perhaps, that I'm guilty of writing this article without shades of grey. I do believe in shades of gray, I do believe that anything is on the table to be studied.

So if McCarthy would like to publicly and repeatedly say that there is no relationship between vaccines and autism, that she is deeply sorry for all the children who got sick, and died, as a result of her celebrity sponsorship of Wakefield and the like, and work to undo all her damage, then sure, maybe she could be useful in calling for more nuance.

But right now, I think she's a menace. And she's hurting your cause too.
This is my take-away on point #2 - if you want to have a more nuanced discussion about vaccines, to inspire research on their side-effects, to work to make them safer, to change the regulatory system, and so forth, then Jenny McCarthy is your enemy. You have to boot her off your island so that we can have this discussion without the quack scientists, Wakefield and his backers, the snake-oil salesmen, and all the others, in the room. Because if they are in the room, you will be lumped with them.

Maybe that's not fair, but that's the way it is.