11/10/2010

Balance and Beliefs: Lines in the Sand or Availability Heuristic Be Damned!

Writing balanced posts can be tricky, especially in relation to vaccines. Vaccines, like religions and politics, have become a hot-button topic in social discussions, and these three areas are absolutely polarized, definitely enter-at-your-own-risk sorts of discussions that can quickly turn to pissing matches. Ah, but they don't have to, I don't think, and not all disagreement is about that sort of thing.

Plenty of people out there engage in inflammatory rhetoric that inflates the risks from vaccines;  I think it's incredibly dangerous and I often counter it here.

I acknowledge that adverse events do happen, and I always have. As to whether I give enough attention to adverse events, each individual, depending on their particular polarity, will have a different assessment as to whether I do the topic justice or not. It’s my blog, though, and my offhand response to that question is that other than acknowledging the reality that adverse events do occur that I don't need to devote more space to that than I tend to.  

In the past, I've devoted blog posts to adverse events and had individuals share their stories (only to realize later on that the story was mostly fabricated and constantly changing) on Countering. The problem with the internet and anecdotes is that, well, it can be hard to know the truth, and it’s so easy for so many to invent things. I try to bear this in mind when reading people’s stories while still trying to honor them and treat them as true. It’s messy, no doubt, and I’ve had that trust broken. Ah well. 

I’ve argued repeatedly on this blog in its 18 months and 806 posts that people claiming adverse reactions simply because their child has autism and had vaccines takes away greatly from those who have truly suffered from adverse reactions. You know, it’s like those folks claiming adrenal fatigue taking away from the life-threatening seriousness of Addison’s. Color me obstinate, if you will, but that does tend to irk me.

I try to arm my students with tools that will help them think critically and make informed decisions. I teach about availability heuristic in my courses; we have this amazing tendency to put so much faith the in the veracity of what we can easily recall. I grant that it’s exceptionally easier to go with our guts and off the top of our heads than it is to put in the time and the effort to slog through databases and websites in search of reliable numbers, especially when no finite, precise, easy answer may be found. It is tremendously frightening to realize that there may not be clearcut easy answers to all our questions. No cures, nor magic pills to wake us up out of reality and plop us into a reality more of our choosing.

One of the rallying cries of many who believe autism to have been caused by vaccines is that not enough research is being done, or the right kind of research isn’t being done. The more extremist the views, the more strident the cries, and then when research is reported on and not to that group’s liking, calls that it’s been paid for by industry and government are put out.
Research into vaccines is on-going and prolific. Past research has shown that serious adverse events are rare. The Vaccine Court has table injuries that it pays out for, no contest, even though in many cases it appears that the table injuries and vaccines have only been temporally correlated rather than the vaccines actually causing the injury.

I would recommend Stratton, et al., Adverse Events Associated with Childhood Vaccines, Evidence Bearing on Causality. Washington, DC: National Academy Press, 1993, located here for free: http://books.nap.edu/openbook.php?record_id=2138&page=1.

I am confident that scientists will continue to work to deliver the safest, most effective vaccines possible and not because they are profit hungry shills but because they want to save lives.

It is reasonable to be concerned about adverse events dealing with medications and vaccines. It isn’t reasonable to inflate risks of vaccination because one has read one-too-many anecdotes on forums and websites designed to foster that competitive one-upping the Joneses. There’s a place for anecdote, certainly, but not being aware of how they can sway our decision making process and how likely it is than any causal assessments made by an individual based on observation are likely to be inaccurate can make it hard to make informed decisions based on factual information. Anecdotes may be compelling, but it doesn’t mean they’re right. So I’m personally not going to make my healthcare decisions based on anecdotes.

All medications, everything we ingest or inject, carries risks. Over 16,500 people a year die from NSAIDS and around 500 from Tylenol. And yet, these products remain over the counter. Compared to these deaths, the risks of vaccinations are, indeed, slight. I would especially direct folks to the chapter on deaths in the above report by Stratton et al., which found 159 substantiated reports of death in a 13 month period on VAERS; the committee found that these deaths were temporally correlated but not causally. *Statistics updated once I had a chance to do some digging. I apologize for the mistakes in probable numbers of fatalities from NSAIDS and tylenol.*

This report notes that even though encephalopathy is a table injury for the MMR, that “The evidence is inadequate to accept or reject a causal relation between measles vaccine and encephalitis, encephalopathy, or residual seizure disorder (see Chapter 6). In the committee's judgment the evidence is inadequate to accept or reject a causal relation between measles vaccine and death from encephalitis, encephalopathy, and residual seizure disorder.” It notes when there are known risk factors: “There is evidence that some severely immunocompromised children, such as those with severe combined immunodeficiency syndrome, dysgamma-globulinemia, or leukemia, are susceptible to overwhelming measles infection and subsequent death, even from attenuated measles vaccine. Infection with HIV has not been associated with death from measles vaccine-strain viral infection.”

To suggest that because one doesn’t know of information means it therefore doesn’t exist and isn’t being done is availability heuristic at play. The Stratton report is from 1994, long before Wakefield initiated this current feeding frenzy.

There are 3,503 currently ongoing studies involving vaccines in the US alone. http://clinicaltrials.gov/ct2/results?term=vaccines+ When I narrow it to risk factors and vaccines, there are 126 ongoing studies.

Emotions are difficult to set aside, especially when they are intense. It’s so hard when you care, when you’re passionately invested in the subject matter to set aside those emotions that get in the way of getting close to reality as possible. It is imperative, vital, that we do so, though. 


Medical decisions should not be made because of emotion and the gut feelings we have.  They should be made through an impartial, rational assessment of all the available information at hand, with an attempt to weigh out the relative risks, recognizing that we are horribly bad at doing just that. It is why emotions HAVE TO be pushed off, why I will not allow fear to guide my actions. I have sat by my son’s hospital bed and wondered on more than one occasion if he would live. I have sat next to my middle child’s crib in the NICU and watched her struggle to breathe and wondered if we would lose her. I will not let fear control my decisions, nor will I risk the errors that going with my gut and what I can recollect off the top of my head convey.

We all do the best we can. When we know better, we do better. As parents, we should feel a moral imperative to know better so that we can do the best we can. My children, especially my son, rely on me to make the best decisions I can for their welfare. For me, that means going with rationality over emotion and making sure that I am accessing the best, most verifiable information that I can. It means checking my gut and going with the evidence. It isn’t easy, and I’m not perfect, but it’s my best chance for making the best decisions I can for my children.

Here, again, are my bottom lines in the autism community:

Bottom line:

Neurodiversity.

Neurodiversity is about accepting people's value and worth is independent of their functional level.
It is about working to help people be accepted and supported.
It is about helping people reach their potential.
It is not inherently anti-cure; if it exists as a movement, it would reject the terminology.
It's about making people's lives better.

Biomed.

Damn stupid name. Everything is biological or medical in nature (even if it's physically related like PT, OT, and speech, it's working to rewire the neuron connections, hence it is biological.
How about evidence-based versus woo/alternative? Better distinction. Way more accurate.
I am for evidence-based practices and minimal-to-no woo. Where no studies exist, risk of harm figures in.

Vaccines.

Do not appear to be a cause of autism at the epidemiological level.
Really not interested in arguing with individuals on their personal narrative level.
Adverse reactions do happen.
More research should be done on making vaccines safer, and on making the safest schedule for individuals.

Autism.

Multiple causes. Multiple variations. Not autism, but autisms.

Autism Community/Autism Culture.

I am not an autism mom.
I am not autistic.
I am the loving, accepting mother to three children on the spectrum.
 I am a member of the autism/autistic culture.
I hope that we can form an overarching community where people feel valued and accepted.

10 comments:

Autism Mom Rising said...
This comment has been removed by the author.
lifewithasperger said...

I really dig this one, Kim. Your bottom lines are a spot on sum up of the position. I don't know how/when people will stop believing the anecdotes, and in some cases the lies. I suspect it won't be soon given that there are MDs supporting and spreading the BS.

But you are a woo fighting warrior princess to the end! :-)

Fight on, Sister!

Autism Mom Rising said...

Yes you did answer them. Thank you. And by the way I am totally jealous at how you are able to craft well written posts so fast, so often. Something like that would take me a week. At least.

One can talk about concern for vaccine injured and it have nothing to do with antecdote or even Autism. Guianne Barre is a research backed side effect from the flu shot for some. And that certain vaccine inserts list seizures as side effects and this is also backed by research.

I see no evidence that science is doing its best to identify who is at risk for injury because I am aware of not a single study that has been or is being done to indentify those people. I don't think those studies will be done without great public pressure and I am trying to do my part there. That, I believe, would go further in restoring public confidence in the program than blaming some Jenny McCarthy, like they prefer to do.

Liz Ditz said...

Great post Kim.

I like your forthright statement of principles.

I also think that the science community MUST do a better job of communicating about ongoing study of vaccine safety.

Science Mom said...

I see no evidence that science is doing its best to identify who is at risk for injury because I am aware of not a single study that has been or is being done to indentify those people.

The problem with this AMR, is that you have already concluded that severe vaccine injuries occur at a rate that would justify several studies to advance. Then, what do you study exactly? What are you looking for? It's kind of putting the horse before the cart.

We DO have studies that have identified vulnerable populations. People with immunocompromised disorders, metabolic disorders and asthma for example. They are not perfect but are the best evidence in the absence of delineating human gene expression and interactions.

Autism Mom Rising said...

If they occur at all then it is a worthy avenue of study. Genetic studies would be a start - studying people with confirmed vaccine injury, whether that be triggered seizure disorders, gbs and look for possible commonalities that point to susceptibility.

KWombles said...

@Thanks, Laura. :-)

@Suzanne, have you looked to see or are you basing your conclusions on what you can readily recall? I certainly haven't had time to parse through the 3000 plus studies currently being undertaken, so I can't speak to them all and whether any of them are close to what you're concerned about. I'm working on an elaboration of some adverse effects and vaccines and will post it as a new post tomorrow; it's gotten lengthy as I collate sources and information. Vaccines and adverse effects are one of my topics of interest, so I've been accumulating studies over the last couple years.

@Liz, thanks. I don't think it's so much scientists' problems as the media's lack of interest in putting the information out there. All one has to do is begin looking to find a wealth of information. Clinicaltrials.gov is pretty handy.

@Science Mom, thanks for commenting. If folks haven't read your blog and forum http://justthevax.blogspot.com/p/forum.html, they really should!

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Science Mom said...

If they occur at all then it is a worthy avenue of study. Genetic studies would be a start - studying people with confirmed vaccine injury, whether that be triggered seizure disorders, gbs and look for possible commonalities that point to susceptibility.

AMR again, what are you looking for? Just because we have been able to sequence the human genome, doesn't mean we know what all of the gene expressions and interactions are. When you are dealing with rare events, it is extremely difficult, if not impossible to gather enough people to make any meaningful comparisons.

I understand the frustration, but campaigning for study designs that we don't have the adequate tools and information for, is not productive. Molecular studies are being done to elucidate genes and epigenetic expression, not to mention more sophisticated methods for collection are being engineered. With this information, then identifying susceptible individuals (to whatever) may be more efficiently achieved.

Kim, thanks for your plug about my blog.

Anonymous said...

Great post. Can’t wait to read the next ones :)