A friend suggested she was tired of hearing about vaccines.  Her comment and our subsequent conversation seemed to reflect an important shift in parent sentiment: the conversation about vaccines is beginning to get somewhere.

While much of this was born of the MSM’s newfound realization that the vaccine-autism connection was cooked, some of this is due to the tireless of work of those like CHOP’s Dr. Paul Offit who work get the story right.

As part of his passionate agenda to expose vaccine truths he’s published Deadly Choices – How the Anti-vaccine Movement Threatens Us All (Basic Books, 2011) (affiliate link).  For those looking to understand the origins of anti-vaccine sentiment, read Deadly Choices.

What struck me is the deep history behind the anti-vaccine movement.  From Jenner’s smallpox fix to modern day MMR struggles, Offit draws fascinating corollaries surrounding immunization that seem to defy the generations.  Vaccine resistance was not born of Andrew Wakefield but broader concerns rooted in religion, individual liberty, fear and propaganda.  Deadly Choices puts the anti-vaccine movement in a historic sequence that reads like good suspense.  I couldn’t put it down.

And just for fun, I’ll bet you didn’t know this:  The Raggedy Ann doll is a derivative of the anti-vaccine movement.  In 1915, Johnny Gruelle, a cartoonist and illustrator in New York City, lost his daughter to congenital heart disease.  Despite the child’s cause of death, Gruelle blamed the smallpox vaccine.  In his daughter’s memory, he created a doll with red yarn for hair and floppy arms and legs—a symbol of children harmed by vaccines.  He called it Raggedy Ann.  Who knew?

Perhaps the most valuable chapter, titled “Dr. Bob,” addresses the myths and fallacies surrounding the alternate vaccine schedule as suggested by Bob Sears.  This formal evisceration of “Dr. Bob” and his harebrained scheme is worth the price of the book.  It should be required reading by every parent in America.  Concerning Bob Sears…

Although Sears is probably well meaning, one has to question the hubris of a man who decides to create his own vaccine schedule—someone who claims his schedule is better and safer than that recommended by the CDC and AAP.  It’s all the more amazing when one considers that Robert Sears has never published a paper on vaccine science; never reviewed a vaccine license application; never participated in the creation, testing, or monitoring of a vaccine; and never developed an expertise in any field that intersects with vaccines—specifically, virology, immunology, epidemiology, toxicology, microbiology, molecular biology, or statistics.  Yet he believes he can sit down at his desk and come up with a better schedule.

I have to add that Deadly Choices author, Paul Offit, should be seen as the ultimate child advocate.  Selflessly representing public health interests in the media, Offit individually works on behalf of children in a way that most of us should.  In a self-centered world that has too quickly forgotten the threat of deadly childhood disease, Offit’s is a passionate voice of reason.  It’s hard to measure the impact of his advocacy.

Despite the recent attention drawn to Andrew Wakefield’s fraudulent behavior, dialog surrounding vaccine truths can’t get enough light.  To understand the history behind vaccine hesitancy is to understand the patterns of resistance to future public health efforts.  Deadly Choices should be required reading by everyone concerned with the future of children’s health.

If you liked this then you might like these other vaccine-related posts on 33 charts: Vaccines, Autism and Firearms; Vaccines, Autism and the Failure of the Hive; Vaccine-Preventable Disease – The Forgotten Story; or When Autism Divides Neighbors.

 

This week I caught up with a former residency mate practicing pediatrics in small town Oklahoma.  We talked about this and that.  Among the challenges we discussed was the issue of vaccine hesitancy.  He shared with me the story of a young mother insistent on a delayed vaccine schedule for her child.  Later in the visit it became evident that the parents maintain a secure selection of firearms in their home.

Vaccines and firearms.  Since hearing the story I’ve been preoccupied with the contrast.

It’s interesting to think what constitutes a threat to a young parent.  For some, the weapons in this story are appalling.  For others vaccine-preventable disease is seen as the real threat to this child and others in her community.

I’ve found parents worry most about what they don’t understand.  For many families in rural America, firearms have been part of the landscape for generations.  Responsible use and respect for weapon safety are clearly understood.  They’re comfortable with what they know.  For this mom the real threat to her child centered on something she didn’t understand: the perceived association between immunization and autism.  Bad journalism propagating bad science is all she’s known.  The subtleties of epidemiology can be very hard for a busy mom to grip.

Pediatricians use anticipatory guidance to steer parents in the right direction depending upon a child’s age and development.  Firearm safety and evidence-based information on vaccine safety are part of this.  Good information keeps children safe.

As the mainstream media, thinking parents and the world make the move from the vaccine-autism connection I suspect that we as pediatricians will be free to focus on what parents really need to know to keep their children safe.

It’s all about what you understand.

 

Last night Susannah Fox put up the Bat Signal.  It seems she’s been charged with addressing the American College of Surgeons next month and she’s looking for some creative input from the medical social community.  Not surprising, really.  Interest in social media among physician groups is growing fast.

I thought it might be worth sharing a few random thoughts on the care and handling of the physician audience.

Doctors think in 1.0

Remember that the average physician is naïve when it comes to social media and its role in health.  Most physicians see e-patients strictly as consumers.  The concept of true socialization and active involvement by patients and physicians will likely be foreign to your audience.

With that said, you’ll get more mileage with a thorough, basic discussion of what this is all about and why it will change healthcare more than you will with a detailed how-to-do-it dialog.

A doctor is a doctor

Don’t sweat the audience.  While you could probably come up with some tailored, specific examples for surgeons or OBs, the core social issues for physicians are not specialty-specific at the introductory level.  In social terms, a doctor’s a doctor.

Raise your expectations

Based on their anemic adoption we sometimes think that doctors are resistant to the idea of social media.   I remember speaking this summer to one of the local medical societies in West Texas.  The audience was much older than I had expected and as I waited I prepared myself for resistance to what I had to say.  But, in fact, the opposite happened.  This audience of older generation physicians saw social as a way to potentially bring medicine back to its focus on connecting with patients.  Who knew?

Even if slow to adopt, physicians are intrigued and increasingly interested in social media’s potential.  We’re a malleable group.

Manage their expectations

It should be understood that we haven’t figured out where and how doctors should make social work for them.  Let’s face it, it’s time consuming and the applications that measurably impact care are few and far between.  The power lies in the potential that comes once we have the entire physician population in the loop.

And be careful of selling the fantasy:  While it makes great fodder for the media, selling “live tweets from the OR” as the saving grace of the next medical generation won’t win over any physician audience.

What keeps doctors up at night

As you think about your physician audience, consider why none of them have blogs or are found on Twitter:  1) Physicians naturally have issues with transparency 2) they haven’t got time and 3) they have concerns over liability and privacy.

But transparency is generational.  Time you can’t fix.  And issues surrounding patient engagement in the public forum are educational.

This patient contact issue and the theoretical potential for liability is a huge preoccupation.  I’ve found that a lot of physicians believe that their social entree obligates them to discuss patient issues in public.  I always convey my bias (possibly a slowly evolving standard):  discussion of patient-specific issues in public forums is off limits; discussion of patient non-specific issues is encouraged. Any attempt at patient-initiated discussion of specific medical issues immediately goes offline and onto the EMR for issues of record, liability and safety.

Doctor-patient dialog surrounding individual care should be limited to HIPAA compliant networks that integrate with the EMR.  I like to cite HelloHealth as an early example of this model.  The screen grabs always wow the crowd.

And if you can discuss an ethical dilemma or two you’ll have the academic elements of your audience drooling.  Bring towels.

Physicians have an obligation to be in the online space

Maybe I get away with it because I wear a stethoscope, but I always tell doctors that they have an obligation to participate in the dialog.  I always use autism and vaccines as the example.  The search engines in this regard are ruled by a loud, vocal minority linking vaccines and autism.  Consider that the American Academy of Pediatrics has 60,000 pediatricians.  If each of them were involved in the creation of some kind of content with reliable information, we would rule the search enginges.  Powerful stuff.  Always has an impact.

Think mobile

It’s estimated that some 81% of physicians will own a smart phone next year and mobile may be the segue into soft social adoption for many MDs.  Touch mobile and win your physician audience.

Tweet by example

One of the most powerful take home messages I pass to physician audiences is to study other doctors who are in the space.  Spend time watching and listening before taking the leap into the public forum.  I encourage people to look at what other doctors are doing and see how it applies to their setting.

Remind them to cultivate their digital footprint

I look at my role with physician audiences as one where I seek to motivate and empower.  And that’s when I feel rewarded. The idea that they can potentially control their digital footprint has huge value.  Ask the audience to do a vanity search and remind them that their reputation is under the control of sites like Healthgrades.  Remind them that they themselves are actually in control what people see when they are searched.

I encourage them to get started with a LinkedIn profile for one thing.  It’s soft social and a nice entrée into an online identity.

I’m not Joe MD

In a strange way I have to warn you to be careful of my advice.  Docs like myself and Howard Luks and others see the world through a very different lens than the average internist or general surgeon in middle America (who I refer to as Joe MD).  When thinking about our approach to the digitally naive physician we have to be careful about how we apply what we know about those of us who have already arrived.  Keep it basic and remember where they’re at.

Finally, I should say that Susannah Fox’s willingness to reach out to the physician community is a testimony to her understanding of how this social stuff is all supposed to work.  Even when we don’t know exactly how to approach something, there’s always someone who does.

I could go on all day.  What else would you add?

 

As doctors we used to think that the Internet was an evil, dirty place.  At once point it was.  Look at the story of vaccines and autism.  What started as a fraudulent MMR-autism connection by Andrew Wakefield was ultimately buoyed up and fueled by the mob.  The vaccine-autism connection will down in history as one of the health infosphere’s greatest failures.

The racket held Google’s spiders at gunpoint.  “Communities” like Age of Autism (look for Hell to freeze over when you find a link here) served as the center of community for a pseudo-empowered group of parents brainwashed into thinking that the best course of action was to threaten heroes like CHOP’s Paul Offit and pediatricians who had spent the better part of two generations struggling against deadly childhood diseases.  Brainwashed young parents echoed the conspiratorial voices of a vocal minority fueled by corrupt information.  It was a generation of young parents lost in hyperspace and disconnected from reality.

Call it bad crowdsourcing with dangerous implications.  Epidemic groupthink under the auspices of Jenny McCarthy.

CNN recently declared the vaccine-autism connection finally over.  While I’d like to agree, the vaccine-autism connection was dead before it ever began.  But Age of Autism trudges on like a drunk zombie tragically disconnected from the rest of the world, still angry and playing the victim of monsters like me.

Whenever I hear ‘information is good’ I think of the great autism-vaccine hoax of the early 21^st century.  All I can think about is the number of young, impressionable parents who fell as frightened victims to the echo of misinformation.

Let it be a lesson to all of us who turn to the hive for information.

 

I’ve always suggested that when we publicly put a human face on the victims of vaccine-preventable disease we would begin to win the war against antivax propaganda.

We’ve arrived.

This month Texas Children’s Hospital published Vaccine-Preventable Disease – The Forgotten Story, a compilation of first hand stories told by the families of those touched by vaccine preventable disease. Vaccine-Preventable Disease – The Forgotten Story is written and produced by the experts in the Texas Children’s Hospital Center for Vaccine Awareness and Research (CVAR) and is sold at cost.

Vaccine-Preventable Disease – The Forgotten Story is impressive in its simplicity. Flipping through you can’t help but be drawn to the compelling first-hand narrative of families touched by preventable childhood illness. Each story is matched with black and white photographs that are as much haunting as touching. I can’t seem to put it down.

Behind each person who has contracted a vaccine-preventable disease is a story of a life interrupted, a family devastated. This book tells the long-forgotten story. It will be a game changer in the battle against fear and misinformation.

In just a few short weeks since its initial printing Texas Children’s Hospital has sold over 15,000 copies and demand is escalating. As an understated but powerful social essay, I predict that Vaccine-Preventable Disease – The Forgotten Story will reach distribution in the hundreds of thousands and serve as an emotional anchor for those looking to advocate for those who can’t advocate for themselves.

You can purchase your own copy here.  The Forgotten Story posters for seasonal flu, measles, hepatitis B and pertussis are also available.

The Forgotten Story is written by Rachael Cunningham, MPH; Julie A. Boom, MD; and Carol J. Baker, MD

 

A national survey of parents published in today’s issue of Pediatrics suggests that the prevalence of autism spectrum disorders (ASDs) is 1 in 91 U.S. children. The study, “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007,” draws on data from a survey conducted jointly by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

I expect this study will get a little press.

How is this report explained?

Until now the prevalence of autism had been estimated at 1 in 150 based on an ADDM study from 2002. The authors of this new study suggest the increased prevalence might be partly explained by differences in the ways the surveys were conducted. The current inclusion of milder forms of autism, pervasive developmental disorder and Asperger syndrome could be increasing the number of children diagnosed with ASD.

Keep in mind that this study is based on parent reports of diagnoses that were given to their children by community physicians. It may not be as accurate as a study based on data validated by record review or direct testing. It may not be the accuracy of parents, but the accuracy of clinicians in an atmosphere of demand for a diagnosis.

Increasing autism prevalence may be an example of “diagnostic substitution.” Changes in the way the diagnostic criteria are applied contribute to diagnostic substitution, whereby children who would have been given a different diagnosis (e.g. mental retardation or language disorder) in the past are now diagnosed with an ASD.

And this is important: Previous studies have shown the average age of diagnosis is decreasing, which leads to an increase in total prevalence at any one point in time. While we have many estimates of prevalence, we do not yet know or have accurate estimates of rates of incidence (onset of new cases).

It must be the vaccines

Assertions that toxic effects of the measles-mumps-rubella (MMR) vaccine or a combination of thimerosal-containing vaccines are responsible for the increase in prevalence of ASDs have been incontrovertibly refuted by an Everest-sized pile of epidemiological studies originating from different countries throughout the world. The weight of all of the scientific evidence overwhelmingly favors rejection of the hypothesis that there is a causal association between vaccines and ASDs.

In countries with different patterns and timing of immunizations, the rates of ASD are not different than in the U.S. Further, there’s no evidence that changes in the vaccine schedule or the components of individual vaccines are causing a higher prevalence of autism.

Why did some children “lose” their autism diagnosis?

This was an interesting finding in the study: About 38 percent of the children who were ever diagnosed with ASD were no longer reported by their parents to have diagnosis.

But diagnosing ASD in very young children can be tricky. Some of these children may no longer meet the criteria for ASD as they grow. ASD may have been initially suspected on the basis of a developmental screening, but subsequently ruled out and never diagnosed.

And unfortunately, some children with developmental delay, intellectual disability, and learning disabilities may have been initially classified as having ASD to help them get publically funded services. Of interest, children who had “lost” their ASD diagnosis were more likely than children without ASD to be diagnosed with other developmental or mental health conditions, such as ADHD, anxiety problems, or behavioral problems.

As pediatricians we have work to do. While comparison between the 2002 ADDM study and the current CDC study illustrates the precarious nature of autism epidemiology, it appears that ASDs are to some extent more common than they used to be. But why and at what rate remains to be seen. The Kogan study will serve as an important point of reference in our slow march towards understanding autism.

 

In an attempt to save what remains of his ramshackle reputation, Andrew Wakefield took to the airwaves tonight in Dateline’s A Dose of Controversy to pitch his long-disproven theory linking autism to the MMR vaccine.

For the unaware, Wakefield’s crafted study published in Lancet in the late 1990’s sparked a worldwide panic over the MMR and its relation to autism. The paper was ultimately retracted by Lancet when numerous irregularities were revealed. And since that time several independent studies involving thousands of children have failed to show any connection between vaccines and autism as suggested by Wakefield. But the world has been unable to let go of Andrew Wakefield and his concocted ideas.

Tonight NBC’s Dateline told the story.

With Matt Lauer on the record declaring the issue as a ‘controversy,’ the deck was stacked against Dr. Paul Offit and the rest of the thinking world who have witnessed the ever-growing mountain of evidence against the autism-vaccine link. Offit, a Professor of Pediatrics at UPenn/Children’s Hospital of Philadelphia, has been a vocal champion of vaccination and archenemy of those looking to link immunizations with aberrant neurodevelopment.

Despite predictions that the piece would create more questions and in turn embolden the vocal antivax minority, Lauer orchestrated an evenhanded story. And when truth is on your side, evenhanded is good.

As far as the key players were concerned, Offit was disciplined and on cue refuting the claims of autism’s false prophets. Wakefield was … well, he was Wakefield: sanctimonious and self-obsessed.  Brian Deer, the reporter who blew the whistle on Wakefield, represented the evening’s most compelling character.

I believe this revealing story represents Wakefield’s last stand. Based on his deteriorating base of supporters and his pending General Medical Council investigation for professional misconduct, I would be surprised if he ever sees the light of prime time again. The world is finally moving on.

Congratulations Mr. Lauer and NBC for responsibly presenting the facts in a way that lets the world see Andrew Wakefield for what he is: A charlatan who’s greed and reckless actions have undermined the work of a generation of pediatricians.

 

Recently Facebook connected me with some old friends from the neighborhood where I grew up. It’s amazing to connect with friends who have been out of reach for so long. But social networking can uncover some real differences.

Last week I commented on Jenny McCarthy video that pokes fun at her anti-vaccine agenda. Some of my Twitter posts feed into Facebook. This was picked up by one of my childhood neighbors who I learned has a son with autism. She took real offense to my link and sent along a message making her position clear.

While I felt bad that I may have been insensitive, I found myself in a strange position: Do I temper my contempt for the anti-vaccine movement in the face of a friend with an autistic child who may feel passionate about a connection? Should I feel comfortable making my case with a mother living with an autistic child? After all, who am I to tell a mother that she shouldn’t believe what she understands in her heart? Tricky stuff.

The side of me that supports parents as active participants in their child’s care wants to offer some weight to their opinion. As someone who makes a living working with moms I sincerely believe in their expertise and intuition. But the side of me that understands the  history and epidemiology of vaccines and autism wants to put a stop to anything perceived as a controversy.

So in the end, despite the passionate beliefs of some close friends and dear patients, I take a firm public stance on the issue of vaccines and autism.

Perhaps more importantly I keep an open mind to the potential genetic and environmental contributors that might be part of the autism puzzle. We would be smart to take our lead from Allison Singer, former executive vice president of Autism Speaks, who recently resigned her post after recognizing that the vaccine-autism connection was losing its legs.

I was once told by a PR professional that “as the mother of a disabled child you can’t attack Jenny McCarthy.” While I recognize the dangers of criticizing Jenny McCarthy or any mother struggling with an autistic child, it’s important that we put a critical light on discredited associations and those who promote them.