Wednesday, May 13, 2015

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:
Just the Vax - In Remembrance of Lilady (@EpiRen) - The People You Thought Were Immortal
Respectful Insolence - In Memoriam: lilady
Skeptical Raptor - Lilady RN – A Memory of a Passionate Vaccine Supporter

Wednesday, April 29, 2015

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.

Wednesday, April 8, 2015

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.

Wednesday, April 1, 2015

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.

Tuesday, March 10, 2015

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.

Wednesday, February 25, 2015

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?

Thursday, February 19, 2015

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?

Thursday, February 5, 2015

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.

Thursday, January 29, 2015

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.

Wednesday, January 21, 2015

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?