We’ve written a lot about anti-vaccine zealotry on this blog, as Steve and I take a particular interest in this particular form of dangerous pseudoscience for a number of reasons. One reason, of course, is that the activities of antivaccine groups like Generation Rescue and its spokesmodel since 2007 (Jenny McCarthy, a frequent topic on this blog) have started to frighten parents about vaccines enough that vaccination rates are falling well below that required for herd immunity in some parts of the country. Indeed, McCarthy, at the behest of her handlers in Generation Rescue, serves up a regular “toxic” brew of misinformation and nonsense about vaccines, most recently in a video that was the subject of a post by Val Jones about her unbelievably pseudoscience-laden blather. Truly, it has to be seen to be believed. Meanwhile, Generation Rescue has sent McCarthy on a media propaganda tour for her latest antivaccine pro-quackery book and set up a misinformation-laden propaganda site called Fourteen Studies (blogged about by Steve Novella, Mark Crislip, and, of course, yours truly) in which they attack well-designed studies that have failed to confirm their pet idea that somehow, some way, vaccines must be the cause of autism. And, when their pseudoscience is criticized, the antivaccine movement has a tendency to launch vicious ad hominem attacks, as they recently did against Steve Novella and have done multiple times in the past against me.
However, there is one other consequence of the antivaccine movement, however, and it is at least as important as the public health implications of the potential dimunition of herd immunity caused by the fear mongering of groups like Generation Rescue. That consequence is the cottage industry of “biomedical” treatments to which desperate parents subject their children. Gluten-free diets, chelation therapy (which has caused deaths), hyperbaric oxygen chambers (a recent story described a child getting severely burned when one of these caught fire), autistic children have been subjected to it all. But of all the biomedical woo to which autistic children have been subjected, one form of woo stands out as being particularly heinous. Indeed, I agree with our fearless leader Steve in characterizing it as an “atrocity.”
I’m referring to Mark and David Geier’s favored “treatment” for autistic children, namely a drug called Lupron.
I recently saw a 14 year old girl in my office with a 2 day history of severe abdominal cramps, bloody diarrhea, and fever. Her mother had similar symptoms as did several other members of her household and some family friends. After considerable discomfort, everyone recovered within a few days. The child’s stool culture grew a bacterium called Campylobacter.
Campylobacter is a nasty little pathogen which causes illness like that seen in my patient, but can also cause more severe disease. It is found commonly in both wild and domestic animals. But where did all these friends and family members get their campylobacter infections? Why, from their friendly farmer, of course!
My patient’s family and friends had taken a weekend pilgrimage to a family-run farm in Buck’s County, Pennsylvania. They saw farm animals and a working farm. And they all drank raw milk. Why raw milk? Because, as they were told and led to believe, raw milk is better. Better tasting and better for you.
In 1862, the french chemist Louis Pasteur discovered that heating wine to just below its boiling point could prevent spoilage. Now this process (known as pasteurization) is used to reduce the number of dangerous infectious organisms in many products, prolonging shelf life and preventing serious illness and death. But a growing trend toward more natural foods and eating habits has led to an interest in unpasteurized foods such as milk and cheese. In addition to superior taste, many claim that raw milk products provide health benefits not found in the adulterated versions. Claims made about the “good bacteria” (like Lactobacillus) conquering the “bad” bacteria (like Campylobacter, Salmonella, and E. coli) in raw milk are pure fantasy. Some even claim that the drinking of mass-produced, pasteurized milk has resulted in an increase in allergies, heart disease, cancer, and a variety of other diseases. Again, this lacks any scientific crediblity.
On May 9th I had the pleasure of lecturing to an audience of critical thinkers at the NYC Skeptics meeting. The topic of discussion was pseudoscience on the Internet – and I spent about 50 minutes talking about all the misleading health information and websites available to (and frequented by) patients. The common denominator for most of these well-intentioned but misguided efforts is a fundamental lack of understanding of the scientific method, and the myriad ways that humans can fool ourselves into perceiving a cause and effect relationship between unrelated phenomena.
But most importantly, we had the chance to touch upon a theme that has been troubling me greatly over the past couple of years: the rise in influence of those untrained in science on matters of medicine. I have been astonished by the ability of “thought leaders” like Jenny McCarthy to gain a broad platform of influence (i.e. Oprah Winfrey’s TV network) despite her obviously flawed beliefs about the pathophysiology of autism. Why is it so hard to find a medical voice of reason in mainstream media?
The answer is probably related to two issues: first, good science makes bad television, and second, physicians are going about PR and communications in the wrong way. We are taught to put emotions aside as we carefully weigh evidence to get to the bottom of things. But we are not taught to reinfuse the subject with emotion once we’ve come to an impartial consensus. Instead, we tend to bicker about statistical analyses, and alienate John Q. Public with what appears to him as academic minutiae and hair-splitting.
I’m not sure what we can or should offer in place of our “business as usual” behavior – but I’ve noticed that being right isn’t the same as being influential. I wonder how we can better advance the cause of science (for the sake of public health at a minimum) to an audience drawn more to passion than to substance?
I would really enjoy your input, dear readers of Science Based Medicine, because I’m at a loss as to what we should do next to reach people in our current culture, and with new communications platforms. What would you recommend?
Perhaps you have discovered for yourself that I am always the last to write a post on a ‘hot’ topic. I am definitely the slowest writer (and thinker?) on this blog, starting each post at least a week before it is up. So the faster writers weigh in first and I am left with clean up.
As I finish writing on Thursday, there have been 892 cases of H1N1 aka Swine flu and 2 deaths in the US. Looks like the world has avoided a disastrous pandemic like the 1919 flu that killed off 2 to 5% of the world. For now. Maybe. I hope.
However, the flood of nonsense about the flu far exceeds the infection rates from H1N1. This entry will be the limited by necessity. The quantity of quackery (9) far exceeds my ability to type. I thought that influenza virus replicated and spread fast. It pales next to the flu woo.
My inaugural post was about vaccines, and I promised that I wouldn’t write exclusively on this topic. But something rotten is brewing in the state of Georgia and this story is just too important to ignore.
The first successful challenge to the National Childhood Vaccine Injury Compensation Act (NCVICA) has taken place in Georgia, and we all should be just a little bit worried. In Ferrari v. American Home Products Corp., the plaintiffs, Marcello and Carolyn Ferrari of Atlanta, have sued American Home Products Corp. (otherwise known as Wyeth) and the co-defendant GlaxoSmithKline, claiming that the vaccine preservative thimerosal led to their son’s autism. The consequences of this ruling could effect the health of the entire nation. To understand why, we need to delve a bit into what the NCVICA is exactly, and why it was created in the first place.
In 1918 the Spanish Flu (named after the country of origin of the first reported case) swept the globe, killing 20-40 million people – more than the First World War (which killed 15 million) which was just ending. When an epidemic spreads to multiple regions, especially multiple countries or continents, it becomes a pandemic. Flu pandemics happen 2-3 times each century.
This is probably partly why there has been so much news attention, even some mild hysteria, surrounding recent outbreaks of swine flu, beginning in Mexico. It is hard to say how many cases and how many deaths there have been so far, because information from Mexico is spotty. Specifically it is difficult to say if people who have died with flu-like symptoms really had the swine flu or something else.
Estimates are that more than 800 people have contracted the swine flu in Mexico with 29 confirmed deaths, although none in the last week. The Centers for Disease Control (CDC) reports as of May 5th that there have been 403 confirmed cases in the United States, with the first death just reported. World-wide there have been 1,490 cases in 21 countries (according to the World Health Organization– WHO).
Some Background on Influenza
The influenza or flu virus is an RNA virus that comes in three genera – A, B, and C. Influenza A is the most common type. It can infect mammals and birds, with aquatic birds being its natural endemic host. Each year there is a seasonal epidemic of Influenza A, infecting millions of people world-wide and killing 100-200,000 – mostly the very old, the very young, and the sick.
First off, I have deliberately not read the entries on Fourteen Studies by fellow bloggers on SBM. I wanted to go through the information on the site myself. So if some of the information is repetitive, sorry.
Second, in the interest of openness and transparency, I will state my conflicts of interest up front: none. I have not talked to a drug rep in at least 20 years. Outside of a trip to San Francisco as a fellow, paid for by the company who was funding a drug study my boss was participating in, I have accepted no gifts or money of any kind from big (or little) pharma since I was a medical student. Nothing. I don’t even eat the pizza at conferences (1).
Third, I am a hospital based adult Infectious Disease doctor. I make zero money from vaccines. In fact, I only make money if people get sick with infections. For my bottom line, giving vaccines to prevent disease is counter productive to my bottom line.
Why 14 studies?
I am writing this because a colleague of mine has been attacked, specifically, our fearless leader Steve Novella. J.B. Handley, Founder of “Jenny McCarthy and Jim Carrey’s Autism Organization – Generation Rescue” (whose usurpation by Jenny and Jim was apparently done in an opportunistic fashion but has had a consequence that must be galling to J.B., namely that some interviewers apparently think that Jenny McCarthy and Jim Carrey, not J.B. and his wife, are the true founders of Generation Rescue), did not like something that Steve wrote and in his characteristic fashion, has responded with a vicious ad hominem attack. Normally I wouldn’t feel obligated to put my two cents in, as Steve is more than capable of taking care of himself in a scientific argument and quite able to refute anything J.B. can throw at him. Moreover, whenever J.B. Handley attacks someone in a fashion this nasty, it is an excellent indication that the person he is attacking has scored some serious points against him. Indeed, I have twice been on the receiving end of J.B.’s tirades on the Generation Propaganda blog Age of Autism. On one occasion, he referred to me as the “worldwide wanker of woo,” and on another occasion seemed to think that I criticized Generation Rescue so harshly because I “don’t like full page ads,” rather than because I hate pseudoscience and anti-vaccine nonsense. When criticism really hits a nerve with J.B. Handley, he lashes out in a characteristic fashion. Clearly Steve’s reasoned, level-headed criticism of the latest Generation Rescue anti-vaccine propaganda initiative did just that.
In this case, however, I feel some explanation is in order because I feel a bit responsible for having brought J.B.’s wrath down upon Steve. First, a little history (albeit recent history) is in order. As I described in detail last week and the week before, Generation Rescue, with Jenny McCarthy and Jim Carrey at the fore, sometimes with J.B. himself, has mounted an impressive anti-vaccine propaganda effort. It started with a media tour promoting her most recent paean to anti-vaccine pseudoscience and autism quackery written with “co-author” Dr. Jerry Kartzinel. The book is entitled Healing and Preventing Autism: A Complete Guide, and three weeks ago Jenny McCarthy and her boyfriend Jim Carrey showed up on Larry King Live to tout a truly incompetent and intellectually dishonest “study” that purported to find that U.S. children are the “most highly vaccinated children in the world” and that that’s correlated with our higher autism rates. I would have none of it. Next, Generation Rescue introduced its equally intellectually dishonest “Fourteen Studies” website, which launched dubious attacks from pseudoexperts on fourteen of the major studies that failed to find a correlation between vaccines and autism or thimerosal-containing vaccines and autism. I wrote a lengthy post for SBM describing the utter intellectual and scientific bankruptcy of the entire enterprise.
One of the more frustrating things about practitioners who promote unsafe and scientifically discredited medical practices is their tendency to change their message for different audiences. One day they’ll tell you that they espouse only evidence-based practices and the next they’ll be promoting snake oil. This double talk is hard to combat, since to disprove them one would essentially have to provide a video of their contradictory remarks.
One day I participated in a series of business meetings with a CAM practitioner in attendance (he was an MD who graduated from UCSF). During one meeting he boldly proclaimed his support of scientifically rigorous research, and praised the Cochrane Collaborative’s efforts to provide systematic reviews of the evidence (or lack thereof) for various practices.
Several hours later we were sitting together in another meeting in which I objected to the publication of a consumer article that would assist parents of children with autism in finding a DAN! practitioner who could provide chelation therapy to their children. I explained that there was no evidence for the efficacy of such treatments, and plenty of evidence for their harm (including the death of at least one child that I’d read about in the news). I suggested that an article describing these dangers might be in order, but that an article encouraging chelation use for autism was simply unethical and I would not allow it to be published.
Instead of agreeing with me, the CAM MD suggested that I was being “narrow” and that I should allow consumers to “explore all their options.” I was stunned. This was the same person who had just said that he fully supported scientific inquiry. So I asked him how he could say that he supported evidence-based medicine, and then turn around and ignore evidence at will – even at the peril of human life.
His response dumbfounded me:
“I am just as comfortable practicing within an evidence-based framework as I am outside it.”
I hadn’t planned on writing about the antivaccine movement again this week, so soon after having had to subject myself to yet another round of Jenny McCarthy on Larry King Live and a truly execrable Generation Rescue “study.” I really hadn’t. For one thing, there’s just so much nonsense laid down by antivaccinationists these days that it’s utterly impossible for one blogger to keep up with it all. I could write about them every single day and still not counter the sheer mass of pseudoscience, misinformation, and general ignorance that antivaccine activists spout each and every day, and because this is Autism Awareness Month lately the misinformation has been coming particularly fast and furiously. Sometimes, however, there arrives a bit of misinformation that is so egregious that it requires some response, regardless of how burned out on the topic I might be; so I guess I’ll just have to suck it up and plunge into the morass again.
The reason is that, in retrospect, I now realize that the Jenny and Jim antivaccine propaganda tour was clearly merely phase I of Generation Rescue’s April public relations offensive. In rapid succession last week, courtesy of J.B. Handley, the founder of Generation Rescue, who in order to have a couple of famous faces fronting his organization has allowed himself to be displaced, so that Generation Rescue has now been “reborn” as Jenny McCarthy and Jim Carrey’s Autism Organization (the better to capitalize on her D-list celebrity yoked to Jim Carrey’s formerly A-list (but rapidly plunging) celebrity), announced Generation Rescue’s latest initiative in a post on its antivaccine blog Age of Autism entitled Fourteen Studies? Only if you never read them.: