One of the key talking points of the anti-vaccine movement is to repeat the claim, “I’m not ‘anti-vaccine.’” Indeed, one of Jenny McCarthy’s favorite refrains has been “I’m not ‘anti-vaccine.’ I’m pro-safe vaccine,” or “I’m ‘anti-toxin.’” In doing so, the anti-vaccine movement tries very hard to paint itself as being made up of defenders of vaccine safety, as if the Centers for Disease Control (CDC), the American Academy of Pediatrics (AAP), and all the regulatory agencies don’t support safe vaccines. Many are the times that we have seen examples of this particular denial, both on this blog and elsewhere. For which specific anti-vaccine activists this is self-deception, delusion, or outright lie is a complicated question, but one thing that is clear to me is that the very existence of this talking point demonstrates that, at least for now, being anti-vaccine is still viewed unfavorably by the vast majority of people. If it were not, there would be no need for vaccine conspiracy theorists to use this particular line over and over again. Also, if the rhetoric from the anti-vaccine movement didn’t demonize vaccines so much as the One True Cause of autism, asthma, and a variety of other conditions, diseases, and disorders, leaders of the anti-vaccine movement wouldn’t be so anxious to assure us at every turn that, really and truly, they aren’t “anti-vaccine.” Oh, no, not at all.

Unfortunately for them, their rhetoric and activities betray them. For one thing, the anti-vaccine movement is not monolithic. There are indeed anti-vaccine zealots who are not afraid to admit that they are against vaccines. Many of them showed up to Jenny McCarthy’s Green Our Vaccines march on Washington two years ago with signs bearing slogans such as “Danger: Child Vaccine (Toxic Waste)”; “We found the weapons of mass destruction”; “Stop poisoning our children”; and, of course, “No forced vaccination! Not in America!” In the run-up to that march, I lurked on several anti-vaccine discussion forums, and I saw first hand how the organizers of the march were trying to keep people with these signs in line and less visible, not so much because they don’t agree with them but because they promoted the “wrong” message. In this, they remind me of political parties trying to rein in their most radical elements.

Among these groups, Generation Rescue has supplanted the former most influential anti-vaccine group, the National Vaccine Information Center (NVIC). It has achieved this largely through somehow attracting a scientifically ignorant washed-up model, actress, and comedienne named Jenny McCarthy who, most recently before having a son diagnosed as being on the autistic spectrum had been promoting “Indigo Child” woo on her IndigoMoms.com website, complete with a “quantum prayer wheel” invented by William Nelson, inventor of the quackalicious EPFX-SCIO. Back in 2007, just prior to the release of her first autism book, Louder Than Words: A Mothers’ Journey in Healing Autism, McCarthy’s “indigo” website disappeared from the web in a futile attempt to send it down the memory hole, but thankfully The Wayback Machine knows all. In any case, thanks to Jenny McCarthy and, at least as much to her boyfriend, the massively more famous Jim Carrey, Generation Rescue has been tranformed from an ignored fringe anti-vaccine group to a famous and influential fringe anti-vaccine group with all sorts of ins among the Hollywood elite, just as it’s been tranformed from just Generation Rescue to Jenny McCarthy and Jim Carrey’s Autism Organization – Generation Rescue.

Its increasing fame and influence notwithstanding, Generation Rescue has been playing the “pro-safe vaccine” game for at least five years now. Indeed, J.B. Handley himself, founder of Generation Rescue, wrote just last year:

I have vaccinated my children. I encourage others to vaccinate. But when I question vaccine safety, or rather the lack thereof, I’m called “anti-vax” by people like you.

Tell me, how am I anti-vaccine? How am I endangering other people by encouraging them to read up on vaccine injuries. How am I endangering them by giving them as much information as possible in the hopes that their children will not have the same reaction as my son?

Of course, in the five years since I first learned of J.B. Handley, during which time I’ve been following his exploits, I have never once heard him say or seen him write anything that encouraged parents to vaccinate, that expressed anything other than regret or anger at having vaccinated his children and, apparently in his view, caused their autism, or that said anything good about vaccines at all. Quite the contrary, in fact. Last year, for example, J.B. Handley began April, which is Autism Awareness Month, by releasing a truly incompetent attempt at a “study” and then launching Generation Rescue’s deceptive Fourteen Studies website. All the while, I have seen J.B. paint himself as a guardian or watchdog of vaccine safety time and time again, while using familiar denialist tactics of sowing fear and doubt; misinterpreting, cherrypicking, or misrepresenting existing science; highlighting bogus science like that of Andrew Wakefield and Mark and David Geier; and demonizing his opponents, the last of which he is particularly talented at.

Consistent with this, it would appear that J.B has finally let his “I’m not anti-vaccine” mask drop. Last week, Handley laid down an unusually candid bit of his typical braggadocio about a recent study that appeared in the journal Pediatrics about parental attitudes towards vaccination. Tellingly, he entitled it Tinderbox: U.S. Vaccine Fears up 700% in 7 years, in which he gloated about having been responsible for the increasing mistrust of vaccines among parents. Since Handley mentions singles out yours truly for his bile, I felt that a bit of friendly analysis was in order.

J.B. Handley starts off the article by boasting:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

Cue the “Star Wars” music, with a rag-tag band of rebels fighting off an evil galactic empire. Citing the study (Freed et al), which found that 25% of parents surveyed believe that vaccines “can cause autism in healthy children” and that 60% of mothers agree or strongly agree that “I am concerned about serious adverse effects of vaccines,” Handley then gloats by congratulating his people:

Community, prepare to take a bow, America is listening.

I can’t help but make three points here. First, I’m not sure why anyone would want to “take a bow” for spreading misinformation with no basis in science, outright pseudoscience, and paranoid conspiracy theories about vaccines that appear to have had some traction among the public. In my book, that is nothing to be proud of at all. Second, if J. B. Handley is “not anti-vaccine,” why on earth would he think it’s a good thing that, if this study is to be believed, parents are becoming more afraid of vaccines, so much so that he blusters and brags about it in his typical fashion? J.B. clearly believes he and his ilk are the responsible for a huge increase in fear and doubt about vaccines and goes so far as to take the credit for it in the name of the “autism community.” He lays out his anti-vaccine belief very clearly in a typically testosterone-laced style. Third, although the survey does raise some cause for concern, it is not as bad for supporters of science-based medicine and good for the anti-vaccine movement as Handley tries to paint it. Before I get to explaining why, let’s first note the full reason that Handley is gloating:

Taking a very different approach from the average journalist, I started doing some of my own research, and came across this study, Parental Vaccine Safety Concerns, Results from the National Immunization Survey, 2001-2002.

I was floored.

I remember 2001-2002. My son was born in 2002. I’d barely heard of autism. I’d heard the faintest whispers about vaccines causing autism, but wrote it off as hippy-conspiracy stuff. Not surprisingly, the 2001-2002 report, unlike the 2009 report, does not even mention the word “autism.”

And, in 2001-2002, what percent of parents expressed any concerns about the safety of vaccines? Seven. 7%. Less than 10. Five plus two. A full 93% of parents said vaccines were “completely safe.” In fact, the 2001-2002 study was exceptionally proud of the “low prevalence of vaccine safety concerns.”

What a difference seven years has made. Folks, the U.S. vaccine program literally has its hair on fire. 56% of parents today are concerned about the serious adverse effects of vaccines, and 60% of moms. 56% of parents is an 8-fold, or 700% increase from 2001-2002.

That’s right. J.B. Handley is taking credit on behalf of the movement he leads for cranking up the hysteria about vaccines, concluding, “Parents, you can now take a bow. It’s way worse than we thought.”

Well, yes and no. You’ll see why this is a typical bit of J.B. Handley hyperbole in a minute. On the other hand, it is hard to argue that fear and loathing of vaccines has increased over the last decade or so. This is particularly evident in the United Kingdom, where Andrew Wakefield’s shoddy, trial lawyer-purchased, incompetent, and possibly even fraudulent 1998 Lancet study linking the MMR vaccine to bowel problems in children, coupled with the aid of the credulous media, both witting and unwitting, has driven down MMR uptake in the U.K. to far below the level necessary for herd immunity. This decline in MMR uptake rates has predictably resulted in measles incidence skyrocketing over the last decade to the point where it has become endemic again. Although it took 12 years, the results of Wakefield’s malfeasance finally came home to roost last month, when, in rapid succession, Wakefield was found guilty of research misconduct by the U.K. General Medical Council, saw his Lancet paper retracted by The Lancet’s editors, saw his infamous “monkey study” withdrawn by NeuroToxicology, and was then forced to resign from Thoughtful House by its board of directors, led, ironically enough, by Jane Johnson, heiress to the Johnson & Johnson pharmaceutical fortune. If 2009 was a bad year for the anti-vaccine movement in many ways, 2010 looks to be potentially as bad, starting with the latest ruling from the Vaccine Court against the second batch of test cases, one year after the first batch also failed.

All of the above developments, and more, have led the anti-vaccine movement in general and J.B. Handley in particular to lash out, and I see this latest bit of braggadocio as part of that lashing out. I was particularly amused by this passage:

Referring again to the 2009 Pediatrics report that “current public health education campaigns on this issue have not been effective,” I am pleased to lay the blame for that on four people: Dr. Paul Offit, Dr. David Gorski, Amanda Peet, and Ms. Alison Singer. The data clearly shows that the efforts of these four to stem the tide of public opinion away from vaccines has been a miserable failure.

I must say, there’s nothing like being mentioned in the same sentence with Dr. Paul Offit, Alison Singer, and Amanda Peet as defenders of the vaccination program to give a nice little boost to one’s ego! And J.B. even called me “Dr.,” something he often apparently intentionally avoids doing! Seriously, I’m profoundly honored that in J.B.’s mind I deserve to be viewed as being on the same level. Think about it. Here I am, an itty-bitty blogger. Well, not exactly itty-bitty. This blog has a healthy and respectable traffic, as does my other, more infamous blog, so much so that to my shock when I traveled to St. Louis a couple of weeks ago the Skeptical Society of St. Louis thought enough of me to arrange an impromptu get together on short notice at a local bar. Even so, to compare my feeble efforts to combat the anti-vaccine movement to those of Paul Offit, who has been a vaccine researcher for decades and made real scientific and medical contributions to eliminating infectious disease, is ridiculous. To compare me to Amanda Peet, who has many orders of magnitude more name recognition that I have, either under my real name or my more infamous pseudonym, does seem a stretch, as does comparing me to Alison Singer, who was forced out of Autism Speaks because she doesn’t share the belief that vaccines cause autism and ended up forming a new autism charity called the Autism Science Foundation. Unrealistic or not, ridiculous or not, being considered to be on par with such people puts me in very good company indeed, although, in the words of Wayne and Garth from a couple of decades ago, “I’m not worthy, I’m not worthy!”

In comparison, all I’ve done is been a persistent thorn in J.B. Handley’s side through my blogging for the last five years about the vaccine pseudoscience promoted by Generation Rescue (and later Age of Autism), written one relatively popular blog, edited another popular group blog, and participated in a panel discussion at TAM7 last year. All of these are worthy activities, but I can only conclude that it is a measure of J.B.’s fixation with me that he would be deluded enough to include me in such a list. Whatever influence I’ve garnered through my own personal blog and, with the help of my cobloggers, through SBM is on the order of several thousand readers, that influence is not even close to being of the same order of magnitude compared to that of the mainstream media or someone like Jim Carrey or Jenny McCarthy, which makes “blaming” me for whatever failure there has been in combatting the tide of misinformation spread by various anti-vaccine organizations rather silly. I also wonder why J.B. didn’t also target Steve Novella, who’s done at least as much, if not more, than I, as he’s done in the past.

Perhaps this is why:

Did Hollywood cast this guy as a villain? He’s perfect! Of course, Offit found Amanda Peet, who let the world know we were all parasites (anyone hear from her lately?). Go online to get the other side, and your likely to find Dr. Gorski’s blog, where a dozen anonymous commentators echo Dr. Gorski’s venomous invective – just the thing to build trust with a new mommy! The newest entrant, Ms. Peet’s replacement, is Ms. Singer, who looks like she stepped out of the morgue to take each interview and tell everyone that vaccines are safe and we all barely exist. Keep talking, Ms. Singer, keep Paul Offit on your board, and keep publicizing the “National Immunizations Conference” on your “autism science” website.

I’ll admit that my other persona is a tad more–shall we say?–blunt (insolent, even!) than I am when I write for SBM, but to hear J.B. complain about “venomous invective” nuked my irony meter. Generation Rescue and its propaganda arm Age of Autism specialize in “venomous invective,” particularly against Paul Offit and anyone else who opposes its anti-vaccine agenda. After all, this is the same man who launched personal attacks on Steve Novella that can only be viewed as more than venomous. This is the same man whose misogynistic attacks on Amy Wallace, a journalist who wrote an excellent article on the anti-vaccine movement, made him infamous throughout the science-based blogosphere. This is the same man who periodically blasts away at me^1,2,3 whenever I get under his skin too much. This the same man whose blog posted a Photoshopped picture of Steve Novella, Amy Wallace, Paul Offit, and Trine Tsouderos sitting around the table for a Thanksgiving feast, the main course of which was a baby, as shown by this screenshot taken from my computer around the time the post showed up:

That was so over-the-top that even AoA ended up deleting it after a firestorm of criticism. I can’t compete with venom like that even if I wanted to, and I don’t want to.

But let’s get to the study touted by Handley. It did indeed show that 25% of parents polled think that vaccines can cause autism in healthy children, a disturbingly high rate, but, quite honestly, much lower than I feared it would be when I first heard about the story. However, what Handley neglects to mention is that, despite the 54% of parents expressing concern about serious adverse events due to vaccines, 90% of parents agreed that “getting vaccines is a good way to protect my child(ren) from disease” and that 88% agreed that “generally I do what my doctor recommends about vaccines for my child(ren).” These responses suggest that, although more than half of parents express concern about adverse events, most of these same parents don’t find the worries they have about vaccines compelling enough to refuse vaccination. In other words, they have heard about the concerns, most likely thanks to anti-vaccine groups and activists like Generation Rescue and J.B. Handley, but the concerns haven’t “stuck” enough to make them refuse vaccination. Unfortunately, J.B. Handley and his ilk are certainly doing their best to change that.

More disturbing is the finding that nearly 1 in 8 parents have refused certain vaccines for their children, with newer vaccines being more likely to be refused than older vaccines. This figure suggests to me that the “too many too soon” propaganda of Generation Rescue and others, and the “alternative vaccination schedules” touted by people like Drs. Bob Sears and Jay Gordon may be gaining traction. How much of that can be attributed to the propaganda of the anti-vaccine movement is impossible to say for sure, but certainly other factors are at play, including a general trend of questioning medicine more, along with the rise of the Internet, which has allowed people with no particular expertise in a topic to attend “Google U.” and conclude that they know more about a topic than researchers who have studied an issue all of their lives. While it’s true that science does advance and scientific consensuses do change, they do so through data, experimentation, and clinical research, not through conspiracy theories and misrepresentation of science. Moreover, changing public opinion has nothing to do with the validity of a position. Many more people believe in ghosts than in the scientifically discredited idea that vaccines cause autism. That does not mean ghosts exist.

In the end, I have to wonder whether the anti-vaccine movement has reached its high water mark in terms of public influence and J.B.’s gloating is a tad premature. After all, the last year or so has been very bad for him and his organization. Before 2009 started, study after study have failed to find a link between vaccines and autism or thimerosal and autism, many of which we’ve collected right here. In February 2009, strong evidence showing that Andrew Wakefield had committed scientific fraud came to light, and that was followed by a ruling against the first three Autism Omnibus test cases. A series of excellent reports by Trine Tsouderos and Pat Callahan of the Chicago Tribune demonstrated the depths of autism quackery driven largely by anti-vaccine ideas, while exposes of the anti-vaccine movement came fast and furious from Chris Mooney for DISCOVER (Why Does the Vaccine/Autism Controversy Live On?) and Amy Wallace for WIRED (An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All), leading to the aforementioned misogynistic attacks against Amy Wallace and a recent hilarious invocation of the “pharma shill” gambit against Chris Mooney. Since 2010 began, not only has Andrew Wakefield been completely discredited that he was forced to resign from Thoughtful House, but the Vaccine Court ruled against the second set of test cases. Meanwhile, later this year Paul Offit is scheduled to release a book about the anti-vaccine movement that paints it in a very unfavorable light. Increasingly, people are (correctly, in my estimation) viewing Jenny McCarthy as a dangerous loon abusing her celebrity.

I’ve been very critical of the AAP and CDC before. I and many others have been sounding the alarm against the anti-vaccine movement for at least five years now, and the AAP and CDC remained tone deaf to the growing vaccine denialism movement fronted by J.B. Handley and, since 2007, Jenny McCarthy and Jim Carrey. To me, it seemed that it wasn’t until 2009 (2008, to be generous) that health authorities in the U.S. seemed to wake up to the threat. So, since 2002, the anti-vaccine movement had the playing field to itself by and large. Now it does not. I may be the eternal optimist in this (either that, or I’m bipolar, cycling between extremes of pessimism and optimism), but for the first time since 2005, the year I first started paying attention to vaccine issues in a big way, I sense a positive shift in the national zeitgeist against the anti-vaccine movement. That’s one reason why I consider it important to mention two things. First, the questionnaires for this survey were administered in January 2009. Second, I’ve sensed this change most strongly beginning in late 2008/early 2009, and accelerating in early 2010, meaning that this survey could indeed represent the high water mark of mistrust of faccines. I also note that the spectacular flameout of Andrew Wakefield in January and February, in particular as evidenced by the retraction of his 1998 Lancet paper, has seriously hurt the anti-vaccine movement, and don’t think they aren’t feeling it.

I do have to thank Mr. Handley though. His article did do more for my already inflated ego than anything since finding out at TAM7 that I’m not just an itty-bitty blogger anymore. I also thank him for laying it on the line: The goal of the anti-vaccine movement is to spread fear and doubt about vaccines among parents, to “bring the U.S. vaccine program to its knees,” as J.B. so aptly put it. Now that we know that, we know that, for all the disclaimers of “I’m not anti-vaccine” notwithstanding, J.B. Handley and Generation Rescue are anti-vaccine to the core.

ADDENDUM:

I can’t resist pointing out a perfect case of crank magneticism by an AoA commenter who left a doozy of a comment after the post above that amused me greatly:

First off Keebler count me in the quarter that denies the 18th century evolution theory that even the theorist decried before his death as he turned to God. His theory was just a 4 centuries removed from the 14th century world is flat group.

Also count me in the group that says global warming is Horse Sh– and the students paper it is based on, the emails that exposed the conspiracy of lies and the revelation that Al Gore used photos from a Hollyweird movie did not have anything to do with my firm conclusion. Anybody who is even remotely aware of the weather man/woman and the accuracy of their predictions clearly knows that the weather cannot be accurately predicted from Monday to Wednesday with any consistency therefore to take the word of these same people that the planet will be warmed significantly from CO2 from SUV’S and cars is beyond laughable. As any grade schooler can tell you the earth has more water than land, almost 72%, and the greatest emission of green house gases is from the ocean, God sort of planned it that way and you can take for granted that he is a wee bit smarter than you are ok genius.

Also Keebler the hysteria from people like you screaming that the glaciers are melting and that this will cause floods all over the world is nothing short of histrionics spawned by true ignorance, you see according to Archimedes principal, another high school physics tid bit, when an object displaces water, like ice does, even if it melts the water level does not rise because of the volume displaced by the ice is equal to it’s volume when melted.

By the way, water is the ONLY substance that when solid is less dense than when it is a liquid. If this were not true then the plants in the bottom of lakes, rivers and oceans in cold areas would die and not make oxygen and the fish would die and then we would eventually die. Again God planned it that way and when you know everything because you actually created everything it works really well.

Finally the vaccine scam will come to an end. Physicians and surgeons everywhere outside of pediatrics and psychiatry are telling people not to vaccinate. I stand straight up and tall and look parents in the eye and tell them not to vaccinate and give them my card and tell them to tell their pediatrician to call me if he has the guts to.

Evolution denial, anthropogenic global warming denial, and vaccine denial, all in one comment! Truly, we have the crank trifecta!

Less amusing is this:

After this scam comes to an end, and it most certainly will come to an end because ALL SCAMS COME TO AN END. I personally am hoping it is through mob violence so I can get my licks in. I am going to have all of these ass wipe fraudulent studies along with the pictures of the authors printed on toilette paper of my choice, with raised lettering( so it catches more fecal material when I clean myself) on double ply paper because I want to be real comfortable when these “peer reviewed” articles and their authors from Pediatrics, Elsevier the CDC and the New England journal of Medicine do their real job. I am certain they will be great at it and that this is what their true purpose in life is.

When J.B. talks about “venomous invective,” perhaps he should look at his own blog. Nowhere do I ever advocate (or even just hope for) “mob violence.”

Yers truly will speak at Tommy Doyle’s, Harvard Square, Cambridge. 7:00 PM on March 29.

Title:

Implausible Health Claims and Human Studies Ethics: A Collision Course

Description:

A broad international consensus regarding protections for subjects in human trials emerged during the 2nd half of the 20th century. It can be summarized in several tenets, most of which pertain explicitly or implicitly to scientific considerations. Recent projects involving human trials of implausible health claims (”CAM”) have been at odds with some of those tenets. I’ll discuss one trial in detail and mention a few others. I will argue that all such trials are likely to be unethical.