Showing posts with label seth mnookin. Show all posts
Showing posts with label seth mnookin. Show all posts

3.05.2011

The Panic Virus: A True Story of Medicine, Science, and FearSeth Mnookin's The Panic Virus: A True Story of Medicine, Science, and Fear is a high-profile book with equally high-profile positive reviews, but his impending West Coast book tour is entirely self-organized. That means Mr. Mnookin is coming here to fight and expose vaccine myths -- and help protect the health of all of our children -- on his own dime.

We, as his supporters, his teammates, his fellow skeptical humanitarians, can and should help out with the funding for this tour. Especially those of us who have long itched to take take instant and effective action against vaccine misinformation. Or those of us writers who may launch our own self-organized book tours in the near future -- we can consider our donations an investment in karma.

The amount Mr. Mnookin said (when pressed, he was hesitant to ask for support) would help is modest -- less than $800 total -- but it will make all the difference for his self-organized tour model. If you can donate even $10 or $20, and/or vigorously email, Facebook, or tweet either the URL for this post or for The Panic Virus West Coast Tour ChipIn campaign page, I think our small-scale fundraiser will succeed.

If you need a final nudge, read Mr. Mnookin's compelling interview on The Thinking Person's Guide to Autism. Then you'll see what kind of gift you'll be giving those who attend his West Coast appearances. And thank you.

Appearances (from The Panic Virus website):
  • [Monday] March 7, Walnut Creek, CA 12:30pm
    Grand rounds discussion, Kaiser Permanente Walnut Creek Medical Center.
  • March 7, Palo Alto, CA 5:30pm
    “Medical Authority and Citizen Scientists in the Vaccine Debate.” Discussion and book signing. Munzer Auditorium, Beckman Center, Stanford University, 279 Campus Ave., Stanford, CA. Sponsored by the Center for Integration of Research on Genetics and Ethics. Free and open to the public.
  • [Tuesday] March 8, San Francisco, CA 4pm
    Discussion and book signing, Robert W. Mahley Auditorium, Gladstone Institute of Immunology and Virology, University of California-San Francisco, 1650 Owens Street, San Francisco, CA. Free and open to the public.
  • March 8, San Francisco, CA 7pm
    Science Café discussion, Q/A, and book signing. The Atlas Café, 3049 20th St (at Alabama St.). Free and open to the public.

2.03.2011

Vrrrrrooooom!

Here's Leo riding his first-ever go kart racer with his dad, while we were in Phoenix over the holidays. He had a great time!

This is also a good representation of the clip at which are days are going lately. Don't blink, is all I can say.

There are two massive top secret projects on the front burner, I'm hoping I can share the news about them eventually.  But even just living the lives we've arranged for ourselves is not an endeavor for the faint-hearted or the easily winded, not lately.

So I'll likely be re-evaluating participation in a number of those day-to-day things, mostly with an eye towards improving quality of life with my family by being less tired and therefore less grumpy and twitchy, and snagging more hours of sleep than I can count on one hand per night. Reasonable goals.

I have to say, I am really proud of The Thinking Person's Guide to Autism, even though crafting the associated book in a manner than does its content justice has taken longer than we editors anticipated. But as for quality of content: In the last two weeks on TPGA I interviewed vaccine expert Dr. Paul Offit about the most commonly held public myths about immunizations,  I interviewed investigative reporter and The Panic Virus author Seth Mnookin about why we need to hold the media resonsible for allowing vaccine fears and misinformation to proliferate, we featured Mark Osteen's powerful insights on his son's never-ending attempts to talk despite largely uncooperative wiring, and Jennyalice wrote a barnstormer, When Medication Is the Right Choice -- a post I think should be posted on every parenting forum in the country (or dropped on the head of every parent who has ever gone around proclaiming "I could never medicate MY child" because they've been fortunate enough to have a child who doesn't require medication just to get through five minutes of a day, let alone an entire day).

I'm also considering going to the IMFAR conference this year. Have any of you ever been? What did you think? From the INSAR website:
The International Meeting for Austism Research (IMFAR) is an annual scientific meeting, convened each spring, to exchange and disseminate new scientific progress among ASD scientists and their trainees from around the world. The first and primary aim of the meeting is to promote exchange and dissemination of the latest scientific findings and to stimulate research progress in understanding the nature, causes, and treatments for ASD.
Also, I'll be speaking on iPads for people with special needs at the UCSF Developmental Disabilities Conference on March 10th. Our key note speaker will be Surgeon General Regina Benjamin:
Dr. Regina Benjamin, [...] our major keynote speaker [will] address issues related to diversity among health care providers serving an increasingly diverse population of children and adults with autism and other disabilities.
Here's info about the conference itself:
This conference provides a practical and useful update for primary care and subspecialty health care professionals caring for children, youth and adults with complex health care needs and developmental disabilities. This year’s topics offer new perspectives, research findings and clinical guidelines, including an overview of relevant information for pediatricians, family physicians, internists, and nurse practitioners who are involved in the care of individuals with autism spectrum disorders, cerebral palsy, and other disabilities.
Even though the conference is geared towards health professionals, much of the information will be useful for families, too. I'd be so grateful to see familiar names and faces.

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By the way, it's Jennyalice's birthday today. Please go wish her joyeux anniversaire (she has a thing for French).

1.28.2011

Seth Mnookin's The Panic Virus: Post-Interview Review and Thoughts

It took investigative reporter Seth Mnookin three years of ten-to-twelve hour days to research and write The Panic Virus, his new book on the roots, flowering, and rotten fruit of our culture's anti-vaccine fears -- so this review and my interview with Seth at The Thinking Person's Guide to Autism couldn't possibly cover everything Seth has to share and that you need to know. If you're short on time, read The Panic Virus's harrowing first five pages, in which an intentionally unvaccinated child nears death from the vaccine-preventable disease Hib. And in my opinion the first 20 pages, which map out misinformation-based vaccine fears' rise and consequences, should be shared by every pediatrician in the country (if you have an iPad, you can download The Panic Virus's first section as a free preview).

The Panic Virus: A True Story of Medicine, Science, and FearWhy did our culture fall so hard for vaccine misinformation? Why did that misinformation proliferate? Mr. Mnookin blames the media, for fanning vaccine fear flames without bothering to determine the fire's source. For allowing celebrities to showcase false minority viewpoints as unchallenged truths. As E.B. White's Charlotte the Spider said, "People believe almost anything they see in print," and her statement can be upgraded to "anything they see on TV" as well. Gullibility regarding media is more pervasive than you might think; when I talked with AAP spokesperson Dr. Ari Brown, she said that even grandparents who have seen the effects of vaccine-preventable diseases first hand  place faith in what Oprah and her guests say over their own experience.

Unsurprisingly, Mr. Mnookin blames the Internet, too. As he writes,
"The anonymity and lack of friction inherent in the online world also mean that a small number of committed activists -- or even an especially zealous individual -- can create the impression that a fringe viewpoint has broad support." [p.198]
There's also our culture's lack of scientific curiosity. Mr. Mnookin takes great care to point out how writers like David Kirby, author of the information-warping mercury-causes-autism book Evidence of Harm, have taken advantage of a cultural willingness take accusations at face value. Kirby exploited the fact that though no legitimate study has ever found a causal link between vaccines and autism, it is also not scientifically possible to prove that vaccines don't cause autism, just as it is impossible to prove that anything is completely safe. Kirby milked that scientific impossibility, cherry-picked quotes out of context, included whatever statements fit his message and ignore any evidence that didn't -- and patchworked it all into a lumbering Frankenstein of persuasive misinformation. Reading exactly how Kirby perverted the facts in writing Evidence of Harm should give anyone pause.

Then there are the Wakefield denialists. The anti-vaccination blogs and believers still cry "Offit makes money off Rotavirus!" while lionizing Wakefield as their children's savior, even though, in Mnookin's examination of Brian Deer's 2004 The (London) Times series investigating Wakefield,
"Wakefield had not been a disinterested clinician while preparing his Lancet paper condemning the MMR vaccine; instead, he'd received multiple payments to examine children as part of a lawsuit that was being prepared against drug manufacturers. What's more, almost half of the twelve children in his study had been funneled to Wakefield by Richard Barr, the class action lawyer representing parents convinced that vaccines had injured their children. The most shocking revelation came later that year when Deer reported that shortly before his piece in The Lancet was published, Wakefield had filed a patent for a measles vaccine that could be administered independently of those for mumps and rubella -- which was just the product parents would be clamoring for if they became convinced that the MMR vaccine was more than their children's bodies could handle." [p. 236]
I've never seen anyone from the autism anti-vaccination movement address these concerns, other than to say that some of the twelve children's parents still support Wakefield. Yes, well. In writing about Rochelle Poulter, the parent of "Child 12" who was asked not by Wakefield lawyers but by the prosecution to testify at Wakefield's "Fitness to Practice" GMC hearing, Mnookin writes,
"When the GMC ruled that Wakefield's actions had been 'contrary to the clinical interests of Child 12,' Rochelle Poulter was aghast. 'I insisted that the hearing be informed that I was completely happy with the treatment my son had received and that I did not have any complaint against any of the doctors,' she wrote in testimonial of her support. 'To this day I do not really know why I was asked to attend and give evidence.' Her confusion was typical of the willful incomprehension of Wakefield's supporters: As long as they had no grievance with Wakefield's methods, they felt any ethical violations he had committed in the course of treating their children should be ignored." [p. 301]
Does this mean Mnookin thinks those who demonize vaccinations are stupid? No. He shows sincere empathy for other parents (he's a recent father), noting that "it's hard to unscare people." But he also doesn't flinch when describing how parents who have truly fallen for the anti-vaccine party line stay on message even when faced with contradictory evidence. The Cedillos, Wakefield devotees whose daughter Michelle was the first test case for the Autism Omnibus (vaccine injury) proceedings, refused to accept that Michelle's own medical records -- as examined during those hearings -- showed autism symptoms from infancy. (In our interview, Mr. Mnookin and I discussed how the Cedillos desperately needed tangible support -- and how Wakefield and his supporters gave it to them. This speaks to a greater need for support services for families of children with severe autism and comorbid conditions.)

The Panic Virus is important reading for those determined to be civil yet evidence-backed role models in an autism community that still includes a vocal vaccines-cause-autism minority. Mnookin's measured take is the antithesis of anti-science mercury-injury crusader J.B. Handley's war cries, e.g.,
"...anyone who repeats this lie [“It’s been asked and answered, vaccines don’t cause autism.”] is immediately my enemy. I mean that, I really do, because there are just too many kids in the mix and this is just too important and if you are either intellectually too lazy or too dishonest to understand the science around vaccines and autism, then, well, you are my enemy. Sorry, it’s a hard knock life."
Whereas Mr. Mnookin spent years researching and subtantiating his statements, Mr. Handley hurls insults at anyone who disagrees with his time-and-again debunked "evidence." I'd remind Mr. Handley that, as E.B. White also wrote, "One of the most time-consuming things is to have an enemy," and that his considerable energies could serve our community best in positive ways, perhaps helping to found support networks for all people with autism in need, not just those whose parents agree with him.

As for Wakefield, his actions -- well-documented by Mnookin -- have resulted in global humiliation and the loss of his medical license. So while Wakefield refuses to back down or admit any wrongdoing, he's had to change course. He's now considering playing pied piper for a different set of autism families in need of support and answers, by targeting Minnesota Somali families of children with autism as a hyperbaric chamber proponent:
"So essentially Wakefield wants to use the Somali kids as more guinea pigs – as he did in his Lancet study – with the unproven and potentially dangerous therapy of hyperbaric chamber treatment for autism. According to the newspaper clipping, many parents have already signed up. And why wouldn’t they. There is no cure for autism, we don’t even know yet what combination of factors cause it. So of course desperate and vulnerable parents are only willing to agree to participate, even if it potentially puts their kids’ health at risk and in the knowledge that Wakefield is a fraud." -Maggie, at The Skeptic's Book of Pooh-Pooh
NIMH, the CDC, and Autism Speaks have teamed up to investigate what may be a higher than typical autism rate in this Somali community, but perhaps, as a Panic Virus coda, Mr. Mnookin could do a bit of investigative muckraking coupled with evidence inoculations in Minnesota?