Locked in Ignorance

The other day, I got into a discussion with someone calling for Congressional hearings on the DeStefano 2004 study that is the latest to-do in anti-vaccine circles. I won't go into the background; you can read about it here. Instead, I'll just present the Storify curation of tweets. My interlocutor just didn't understand what she had read. There is nothing wrong with that. We all have areas in which we lack the requisite knowledge to fully grasp the subject. The real trick is figuring out where we are ignorant and put in the effort to learn and grow. I'm presenting the whole conversation here in the hopes that others might learn from it. It's a bit long, but it gives a good pictures of how our preconceptions can lock us into a state of ignorance.

Here are a few resources for your reference as you read through this.

• MMR, the CDC and Brian Hooker: A Guide for Parents and the Media 
• Age at first measles-mumps-rubella vaccination in children with autism and school-matched control subjects: a population-based study in metropolitan atlanta (Original study from DeStefano et al.) 
• A look at the analysis plan for DeStefano’s MMR study: no evidence of fraud (includes a link to the 2001 Draft Analysis Plan) 
• Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data (Brian Hooker's retracted study)

Ignorance is not bad, unless we make no effort to overcome it. Being wrong is not bad, unless we do not accept that we are wrong.

What does the dox say?

The other day, a friend of mine wrote a blog post about how an anti-vaccine Facebook page was taken over by someone who worked their way up to admin privileges, locked out all of the other admins, and then started posting goat memes, a practice known as "goating". My friend had been invited to take part, but by the time he took a look, the goating was well underway. All he did was write up a blog post describing what had happened, mentioned in passing that he had enjoyed watching events unfold, and giving a history of how goating started.

And for that, he was doxed.

Donald Trump's "Massive" Vaccines

This will be a very brief post. As I was reading Orac's post about Donald Trump's anti-vaccine musings, one thing kept jumping out at me. Trump kept talking about "massive shots" that kids get, going so far as to say that "tiny children are not horses". I get the impression that Trump has either never seen an actual vaccine syringe or he is so terrified of needles that when he did see one, his interpretation of reality was so warped he imagined it to be some huge monstrosity.

At any rate, I put this image together to illustrate what I think is going on in Trump's mind. Enjoy.

Oh, and as a side note, do you know how hard it is to find images of doctors practicing good hand hygiene by wearing gloves while administering a vaccine?

Ethan Posard's The Shots Book

Be a community immunity superhero!

I meant to do this post at the beginning of the month. I really did. But life finds ways of interfering. In case you didn't know, August is National Immunization Awareness Month. I've posted stuff for NIAM before, like my lineup of vaccine preventable disease wanted posters. I've also written other posts for past Vaccine Awareness Weeks that could fit in well with NIAM, too, like the myth that if vaccines work, then it doesn't matter if you vaccinate your kid or not. Some years, though, I've let August slip past without writing anything specifically for NIAM, even though I have written posts with some vaccination issue as the main topic.

Not this year. I could write about outbreaks of diseases or the activities of the anti-vaccine movement, but I'd rather keep things nice and positive, at least for now. In July, I received a review copy of The Shots Book: A Little Brother's Superhero Tale, by Ethan Posard. Rather than publishing a post about the book right away, I wanted to hold off until Immunization Awareness Month. Then, as sometimes happens, life decided to muck up my good intentions and delay me for a while. Better late than never, right?

Ethan is the younger brother of Camille Posard, one of the talented young high schoolers who wrote and produced the film Invisible Threat, which I discussed last year. Although the film was met with exceptionally harsh criticism from the anti-vaccine movement (without their even having viewed the documentary), the teens who produced it proudly stood up to the bullies that tried to silence them and shut down screenings. One portion of the film follows Ethan as he goes in for one of his scheduled shots, and it's that experience with both the shot and the film that inspired him to write this book.

Are You Weird? Not on the Internet! #NeverWeird

Nothing weird or dorky to see here.

Ever feel like you don't quite belong? That something you do, or something you're interested in sets you apart from other people, but not necessarily in a positive way? I've certainly felt that way. I geek out about something or make some dorky joke and just get blank stares, or people suddenly find something intensely interesting somewhere else. Before sci-fi and fantasy were considered acceptable fare by the general public, I was into dragons and magic. I liked Star Trek. Hours ticked by while I played games on my computer. And role-playing games? When, where, and what type of character is needed? Don't play? I'll show you the ropes. Online role-playing games? Woot! I spent a number of years playing a MUD (multi-user dungeon, basically a text-based online game) originally named "F-----" (sorry, gotta avoid infringing on a trademark owned by some ocean-adjacent spellcasters). Eventually, I moved on to be a builder, creating large portions of the world. When the trademark owners decided they wanted to get in on this whole online gaming thing, giving an ultimatum to the owner of the MUD to buy a license or shut down, I spent a hectic several days converting the entire world to remove any trademarked words and change descriptions. I spent hours every day playing, building, and running quests. After a few years, the game took a hiatus. Although I helped start it up again, I realized that it took over too much of my life and that I had to give it up. I scaled way back, ultimately quitting the game.

But no matter how geeky my interests, I still held back a little bit so I could "fit in" (sorta) with "regular" people (not to mention my fear of getting sucked into something that would eat up all of my free [and not-so-free] time). And because of that, I wasn't quite geeky enough for the geeks. The really hard core gamers? I might as well have had three heads when I showed any lack of knowledge about the latest game. I'm weird. And I'm proud of that.

The internet, however, is something of an equalizer. No matter what your interests, no matter how odd your sense of humor, you will find a community online that accepts you and welcomes you for who you are. Online, you never have to worry about being "weird". That's one of the big messages in Felicia Day's new book, You're Never Weird on the Internet (almost).

Who Chooses? Parents' vs. Children's Rights

There's a topic that I've touched on a few times over the years here, but I've never really delved into it. It's something that comes up pretty frequently in discussions of children's health, particularly when talking about vaccines or so-called alternative medicine. It's even something that arises around issues of which real treatment a child should receive. I've mentioned it in passing in posts about vaccines (e.g., when talking about why it actually does matter to others if you vaccinate your child, how anti-vaccine people want to change legislation, or how they oppose what they see as government interference), as well as my discussion about a case involving controversy over competing diagnoses. Others have also written about it in the context of cancer treatment. A common element in all of these topics is autonomy: the right to make decisions about one's own healthcare. More specifically, do parents own their children? Do parents have the freedom and the right to do with their children as they please? Or are parents merely guardians and stewards for their children until they are mature enough to make decisions on their own? Where do parental rights end and the child's rights begin?

Recently, this notion came up again in response to a post on Reddit, in which a mother, who is opposed to vaccines and did not vaccinate any of her children, relates how she discovered her eldest daughter got herself vaccinated in secret, much to the mother's chagrin. She asks if she can take any legal action.

Jim Carrey's The Bad Tweet

Did you learn nothing from this movie, Jim?

[Update 7/2/15 at 6:30pm: Jim Carrey has removed the tweets mentioned below and replaced them with text-only tweets. He has not tweeted any apologies.]
 
Oh, Jim Carrey. Not content to be a fool on screen, you decide to (continue) to be a fool on Twitter. After the passage and signing of California's SB277, a new law that removes non-medical exemptions to school immunization requirements, Carrey went on a bit of a rant on Twitter, declaring the law fascist (it's not), playing the Pharma Shill Gambit, the toxin gambit, and, like so many other anti-vaccine activists, declaring he's not anti-vaccine. In short, he's just following the anti-vaccine handbook. But he wasn't content to keep it to just being mildly unhinged. But I'll get to that in a bit.

I first became aware of Carrey's anti-vaccine nonsense back in 2009, when Carrey was with anti-vaccine spokesperson Jenny McCarthy. For a while, Phil Plait, aka the Bad Astronomer, had occasionally written about the anti-vaccine movement. Like clockwork, anti-vaccine activists would show up in the comments spouting the same tired tropes over and over. It prompted me to write up a summary addressing the more common myths around vaccines. It's helped some learn the truth and facts about vaccines and exposed many of the lies told about them.

Apparently Jim Carrey didn't bother reading it, or, if he did, he didn't learn a thing. So what has he done this time around that went beyond merely making a fool of himself and showed that he is an opportunistic and insensitive ass that doesn't really care about those affected by autism?

SB277 Signed! Congratulations, California!

June 30, 2015 - A happy day for California children!

This is just a very brief post to celebrate the triumph of science and public health over the fear and lies of the anti-vaccine movement. On June 30, 2015, Gov. Jerry Brown signed SB277 into law. As I mentioned briefly before, SB277 ensures that only medical exemptions will be allowed for school immunization requirements. California has joined Mississippi and West Virginia as the only three states in the country that put children's health above misguided personal and superstitious beliefs.

In his signing statement (PDF), Gov. Brown noted the importance of vaccines and the science that supports their use:

The science is clear that vaccines dramatically protect children against a number of infectious and dangerous diseases. While it's true that no medical intervention is without risk, the evidence shows that immunization powerfully benefits and protects the community...

...Thus, SB277, while requiring that school children be vaccinated, explicitly provides an exception when a physician believes that circumstances - in the judgement and sound discretion of the physician - so warrant.

My thanks go out to Senators Pan and Allen for shepherding this bill through the California legislature, to all of the senators and assembly members who voted for this bill, the parents and activists who supported their efforts, and Gov. Brown for signing it. You have all done an amazing thing to protect the health of California's most vulnerable population.

SB277 Opposition: The Smokescreen of Parental Choice

Humans love to have choices. From early on in our childhood, we like to be able to choose what we want to do. Play with this toy or that one. Eat this food or that. And we don't like having limitations placed on our choices, especially if it involves doing something we don't want to do. Our parents try to teach us that while we are able to choose, sometimes our choices have strings attached. "You need to finish your vegetables if you want dessert." We're given the power to choose what to do: eat the veggies so we can have dessert, or choose not to eat the veggies and miss out on dessert. We might not like the options, we might wish we could choose the dessert without any other limits on our choice, but we have to deal with the reality. Depending on our maturity, we may throw a tantrum when we don't get what we want, when there is even the most minor constraint on our choices.

By the time most people are adults, they're mature enough to realize that every choice we make has some sort of consequences. They may occur prior to getting what we want, or they might follow it; they may be good consequences, or they may be bad. Then there are those who never seem to reach that maturity. They're stuck in the childish dream of wanting their choices to be free from any limitations, unable to accept that their choices may have consequences or that there may be some manner of prerequisite before they can have their choice fulfilled.

We can see this in action in the anti-vaccine movement, in particular as they fight against a bill in California (SB277).

In Memoriam: Lilady

It is with a very, very heavy heart that I write this. I recently learned that a member of our community, known to most as "Lilady", passed away. She was a vocal and fierce advocate for public health and children, especially those with special needs. Her own son suffered physical and intellectual issues due to a rare genetic disorder, ultimately predeceasing her in his 20s. She also helped care for the son of her dear friends, who similarly suffered from multiple medical issues, including profound mental retardation and autistic-like behaviors. Until her death, she visited him every week.

In her youth, she saw first-hand what diseases like polio could do, with the virus taking the life of one of her childhood friends. She also once mentioned how a cousin was left with permanent brain injury due to measles encephalopathy. These early experiences inspired her to pursue a career as a public health nurse. Her years as a licensed registered nurse and epidemiologist gave her particular insight into infectious diseases and how they could best be controlled. Lilady dedicated herself to improving the lives of others.

Lilady has been an active voice online, particularly on the topic of vaccinations. She was often one of the first to respond to anti-vaccine myths on news articles from around the country. I first "met" Lilady over on the blog Respectful Insolence. We eventually corresponded via email, and her passion for science and justice always inspired me. She never shirked from telling the hard truths, even if it meant being perceived as gruff or "mean". And it was amazing to see her in action across the web. Whenever a news story cropped up on autism or vaccines, just as surely as anti-vaccine activists would swoop in to fill the comments with myths and nonsense, you could be sure that Lilady would be there, too, to counter them with science and fact.

She has been a great friend to many of us, offering support and comfort in our own times of need. I am honored to have known her, and my one regret is that I never had the opportunity to meet her in person. My thoughts go out to her family and friends.

I invite my readers to share their own memories of Lilady in the comments in celebration of her life.

Other tribute posts around the 'net:
Autismum - Goodbye, Lilady RN
Just the Vax - In Remembrance of Lilady
Left Brain Right Brain - Lilady: goodbye, old friend
Medium.com (@EpiRen) - The People You Thought Were Immortal
Respectful Insolence - In Memoriam: lilady
Skeptical Raptor - Lilady RN – A Memory of a Passionate Vaccine Supporter

The NECSS of Thought and Reality - Year 5 (Part 1)

This year marked the seventh annual Northeast Conference on Science and Skepticism (NECSS) on April 9-12. Held in New York City, NECSS brings together people from all manner of backgrounds to spend a few days learning about science, critical thinking and how to improve our communities through education and outreach. It is a joint venture by the New York City Skeptics and The New England Skeptical Society. This was the fifth year I've attended, and just like in past years, it blew me away. Over 500 people attended this year's conference from at least 30 states and a dozen countries. If you're interested in past years' conferences, see my reviews from 2011, 2012, 2013 (part 1 and part 2), and 2014 (part 1 and part 2). If you were not able to attend and would like to see the presentations, they will be uploaded to the NECSS YouTube channel, where you can also view presentations from previous conferences.

I always take my NECSS review as an opportunity to revisit what "skepticism" means, what it means to be a part of the "skeptical community". Skepticism isn't what you think, but rather how you think about the world around you. A core principle of skepticism is that you should always accept the possibility that you could be wrong. The world is so incredibly complex that we cannot know everything individually, so when we observe some event or read a web site, any conclusions we make are provisional. New evidence may support those conclusions, or it could completely overthrow our viewpoint. To be skeptical, then, is to ask questions, to investigate, to weigh the evidence presented, to come to conclusions supported by good evidence and to be willing to admit mistake and change our stance. Skepticism is not simply the rejection outright of claims with which we disagree simply because we do not like them. And the skeptical community is really just the broader collection of normal individuals who view the world through that skeptical lens. We are parents, children, teachers, students, scientists, laborers, doctors, patients, lawyers, desk jockeys, engineers. We are rich. We are poor. We live in cities and in the countryside. We come from all over the world. In short, we are people striving to improve ourselves and the world around us.

For those who have never been to NECSS, not only is it a great opportunity to learn a lot of new things, but there are a lot of great people to meet and new friendships to forge. My experience has been that everyone is generally pretty open to being approached. The conference provides ample opportunity to socialize outside of the talks. I've made a number of new friends there, and it's a great chance to reconnect with people you otherwise don't see frequently.

On with the conference.

Beware the Humpty Dumptys

Language is a very powerful thing. We use it to convey our thoughts and desires. The words we use have meaning. It may be literal, where what we say is exactly what we mean. Or the subtext may carry a meaning beyond, or even at odds with, the specific words that we choose. No matter which language we speak, there are certain assumptions we all have regarding the words that we use. Primary among those assumptions, and what allows language to work as a means of communication, is that we all agree on the actual meanings of words. When we do not agree on the basic meanings of words, then we can no longer communicate.

A good example of how communication breaks down when we begin to change the agreed-upon meanings comes from Lewis Carroll's Through the Looking Glass, when Alice encounters Humpty Dumpty:

'And only one for birthday presents, you know. There's glory for you!

'I don't know what you mean by "glory",' Alice said.

Humpty Dumpty smiled contemptuously. 'Of course you don't — till I tell you. I meant "there's a nice knock-down argument for you!"'

'But "glory" doesn't mean "a nice knock-down argument",' Alice objected.

'When I use a word,' Humpty Dumpty said, in rather a scornful tone, 'it means just what I choose it to mean — neither more nor less.'

Humpty takes a common word and makes up an entirely different meaning for it. If I were to ask you to pass me that apple, you'd be rightly confused if I got upset that you handed me an apple instead of a wrench. Yet this is a behavior that seems to be fairly common among those who strongly oppose vaccinations.

Harpocrates Speaks is Closing

It's with a heavy heart that I announce that Harpocrates Speaks will be closing. It's been a great five years, overall. I met a lot of really great people through my blogging and online advocacy, but now it's time to hang up the keyboard. This isn't something I'm necessarily choosing to do, but something I must. You'll see why after the break.

Stand Up for Parents' Rights to Accurate Information on Vaccines

A few years ago, California's legislature took steps to ensure that parents who wished to opt out of getting their children immunized for school or day care understood what their decision meant. Assembly bill AB 2109 required that before a philosophical exemption could be granted, parents had to get a health care provider to sign the exemption form, indicating that the parent received information on the risks and benefits of vaccination. In order for parents to make an informed choice, they ought to have good, science-based information on which to base that choice. SB 2109 seemed like a bill that should have had unequivocal support from the anti-vaccine, sorry, "pro-vaccine-choice" movement. Instead, they vehemently opposed it, led by the National Vaccine Information Center (NVIC). Despite NVIC's lobbying, AB 2109 passed.

The latest unprecedented outbreak of measles, starting in California and up to 132 cases in that state as of March 6, has led several state legislatures to consider bills that would tighten up school vaccine exemptions and improving parent education regarding immunizations. Naturally, this led to claims that government was trying to remove choice and personal belief. Some of those complaints are against bills aimed at removing non-medical exemptions. And some oppose bills similar to AB 2109, like Minnesota's SF380/HF393.

Is the Government Taking Away People's Beliefs?

Measles has been in the news a lot, lately. And it's not surprising, with the unusual 644 cases in 2014 and 154 (as of Feb. 20)  and counting already in 2015. The outbreaks have not only grabbed the attention of the media, but politicians are starting to take notice, as well. Several state legislatures are either already considering or will be introducing bills aimed at improving tracking of vaccine uptake and improving immunization rates overall. Some of these bills require disclosure of immunization rates for each school. Others go much further and would remove philosophical exemptions from school immunization requirements. These latter bills would bring those states more in line with Mississippi and West Virginia, which only allow for medical exemptions for students' school shots (and also just happen to have some of the lowest rates of vaccine preventable diseases).

To say that those who, either in total or just the mandated school-entry immunizations, are opposed to vaccinations are unhappy would be an understatement. Moves to remove non-medical exemptions from school vaccination requirements are met with arguments about personal freedom, that this is no different than what the Nazis did to the Jews during the Holocaust, or that the government is taking away people's beliefs or rights.

So what's going on? Is the government taking away people's beliefs? Are they infringing on our rights as citizens? And what about the children who are affected by all of this?

Genotypes, Serotypes and the MMR: Cognitive Dissonance in Action

Many of those who have bought into the anti-vaccine message seem to hold very tightly to their chosen belief. The more emotionally invested they are, the more likely they will go to great lengths to justify or rationalize their position. True, this is not unique to anti-vaccine activists or those closely associated with them, but it quite commonly dictates their reaction to evidence that challenges their beliefs. Evidence that contradicts their worldview, causing cognitive dissonance, leads to different mechanisms to cope with the psychological discomfort that results. The less entrenched individuals may look at the evidence, accept it as valid, and change their prior beliefs to fit with the new evidence. Some may simply ignore the evidence and pretend it doesn't even exist (e.g., "vaccine have never been studied for safety" despite numerous studies doing exactly that). But more commonly, they will invent rationalizations to explain away the contradicting.

The most recent example of this is the current outbreak of measles that started at Disneyland in California, and to a lesser extent last year's historic case count (644 cases) that hasn't been seen in the past 20 years and surpassed the number of measles cases from the previous five years combined. The Disney outbreak has resulted in 125 cases (through February 8) in just over one month (141 cases in two outbreaks as of February 13) resulting in 17 known hospitalizations. The majority (88%) of cases were either unvaccinated (45% of the total) or had unknown or undocumented vaccination status (43% of the total). The unvaccinated have been a significant contributor to the size of this outbreak and the speed with which it has spread. And the media has taken notice, with the majority of outlets putting the blame right where it belongs: on the anti-vaccine movement.

So how have anti-vaccine types responded?

Demystifying Vaccine Ingredients - Aluminum

People, in general, tend to have a fairly poor grasp of chemistry. I don't blame them; there's an awful lot to learn and it can get pretty complex. To make matters worse, this lack of understanding is often coupled with what some would call "chemophobia" (not a very good name, as it's not a real phobia, nor does it generally rise to the level of debilitating pathology). In short, people tend to have an inherent, emotional distrust of "chemicals" and substances that have weird, hard to pronounce names or that tend to have negative associations. For example, who wants to ingest 7,8-Dimethyl-10-[(2S,3S,4R)-2,3,4,5-tetrahydroxypentyl]benzo[g]pteridine-2,4-dione? Maybe you'd prefer C₁₇H₂₀N₄O₆? But that chemical is in a lot of foods that we eat. Many processed foods, like cereals, pastas and cheeses contain it. Don't eat processed foods and eat nothing but an all-natural, organic, "healthy" diet? You still won't avoid that chemical, since it's also in a lot of leafy greens and legumes. Both of those are the same chemical, also known as riboflavin, or vitamin B2. What about potassium? It's a metal that, when exposed to water, reacts very violently, exploding almost immediately. If you are exposed to excessive amounts of potassium, you can develop muscle paralysis and heart palpitations. And yet, it is an essential part of our diet. Your body needs potassium in order to function properly.

When it comes to medical products, there is an even greater uncertainty around the ingredients. Not only do the problems above come into play, but add on distrust of faceless companies or unsavory associations, and the fear increases. I illustrated this in two of my previous posts, one on formaldehyde and one on monosodium glutamate. Some vaccines contain small amounts of these substances as a part of the manufacturing process. But there is a vaccine ingredient that gets even more bad press than either of those: aluminum (or aluminium, if you prefer). Let's take a look at this substance, how we're exposed, how our bodies deal with it, and its role in vaccines.

It's Past Time to Pay the Piper

In the story The Pied Piper of Hamelin, the German town of Hamelin suffers from an infestation of rats. When things are looking bleak, along comes a piper dressed in bright colored clothes. He claims that he can rid the town of the rats. The mayor makes a deal, promising to pay a handsome sum of money if the piper should accomplish this feat. At once, the piper sets to the task, playing his magic flute. The rats begin streaming out of the houses and shops, following the piper to the nearby Weser River, where all of the rodents drown. Having held up his end of the deal, the piper goes to collect his due, but the mayor shirks his responsibility. He reneges on the deal and refuses to pay the piper the agreed upon sum. Angry, the piper leaves, vowing to have his revenge. He returns later and once more plays his magic flute. This time, all of the children of the village flood the streets to follow the piper out of the village, never to return.

The story inspired a lovely phrase, "pay the piper", to describe those situations where one must accept the unpleasant or undesired consequences of one's actions. It's a phrase that is particularly appropriate when talking about the anti-vaccine movement, their enablers and the current, and distressing, measles outbreak originating at Disneyland. For years and years, anti-vaccine activists and the handful of physicians who eschew their professional obligations in order to pander to them have downplayed the risks of vaccine-preventable diseases like measles, exaggerated the risks of the vaccines, and done their damnedest to bring down vaccination rates across the country. The natural consequence of this is that we are seeing the return of diseases that we eliminated from endemic circulation.

Grant Opportunity: Help Advance Vaccine Safety

Photo credit: James Gathany
Source: CDC/Judy Schmidt

I know I've had a bit of a dry spell lately, having written nothing since my posts in November on so-called "Right to Try" laws in the U.S. and the Medical Innovation Bill (aka the Saatchi Bill) in the U.K. Life outside of the blogosphere took up a bit of my time, getting me out of the habit of sitting down to write. So, my apologies to my readers.

To get back into the swing of things, I thought I'd start off with a brief post about a grant opportunity from the Department of Health and Human Services' National Vaccine Program Office (NVPO). NVPO plans to award two grants of up to $250,000 each to support research aimed at improving the safety of vaccines. Vaccine safety research is something I can get behind. In fact, some of you may recall that a few years ago, I put my life on the line to support vaccine research by racing through 5km of zombie-infested countryside. (The zombies got me, but I recovered!)

So what is this grant all about?