Monday, February 18, 2008

AAP, Fact, and Opinion

This blog is titled "One Dad's Opinion", and my posts are full of all kinds of opinions on any number of topics. It is nice to live in a society where I am free to offer my opinions and to discuss them openly with those who agree and disagree with me.
Sometimes, though, opinions can easily be confused with facts. This is an area of potential problems for almost any topic, but can become particularly dangerous when discussing public health issues.
Take the autism/vaccine connection. This is an area where there are numerous known facts along with lots and lots of opinion. Regrettably, this is also an area where, in some areas of the popular media as well as the internet, opinions have come to be viewed by some as facts. This is a trend that is potentially dangerous to the public health and, as such, the Autism Hub members have joined together today to help counteract that trend.

Here are some facts:
There exists no scientific evidence showing that the administration of childhood vaccines cause autism.
There exist in excess of 20 studies that show there is no link between childhood vaccines and autism.
Today, there is an outbreak of measles - a highly communicable, vaccine-preventable disease that kills up to 3 of every 1,000 children who contract it in developed countries - in my area of the country. So far, 11 children have been diagnosed. All 11 children have NOT received the measles vaccination. For some, it is becuase they have not yet reached one year of age. For the rest, it is because their parents chose not to have their children vaccinated, possibly due to their fears about the vaccine/autism connection. Source.

Regardless of your view on the vaccine/autism connection constantly discussed in the media, please carefully consider these three facts as you read the following letter from Susan Stevens Martin of the American Academy of Ped Pediatrics. If, after reading the letter, you feel that you are a candidate to be a media contact on this issue, please leave your contact info in my comments section for this post or email me directly. Thank you for taking the time to consider helping with this very important public health issue. The AAP letter follows:

Hello,

As part of our ongoing response to media stories regarding autism and
vaccines, the AAP communications department is compiling a list of
parents who support the AAP and are available for interviews. We are
looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support
immunization and who do not believe there is any link between their
child's vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This
could be a parent who declined immunization, whose child became ill
before a vaccine was available, or whose child was ineligible for
immunization.

We are asking for your help identifying parents who would be good
spokespersons. They do not need to be expert public speakers. They
just need to be open with their story and interested in speaking out
on the issue. We will contact candidates in advance to conduct
pre-interviews, to offer guidance on talking to reporters and to
obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and
contact information to select media. We hope to build a list of
parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue
is likely to recur in the national and local media. The AAP is
committed to doing all we can to counter such erroneous reports with
factual information supported by scientific evidence and AAP
recommendations.

The anti-vaccine groups often have emotional family stories on their
side. The ability to offer a reporter an interview with a similarly
compelling parent who is sympathetic to the AAP's goals is a powerful
tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics



14 comments:

Matt said...

Steve,

thanks a lot for posting this! It is long past time that the AAP should be getting this message out.

Maddy said...

I'll say the same as I have already said elsewhere today, unfortunately, we seems to be a whisper and most people receive an entirely different message.
BEst wishes

MJ said...

I can understand why people believe that vaccines are important (and they are).

However there are some things that you aren't including. Such as the fact that not everyone develops an immunity to the disease from the vaccine. Or the fact that the immunity granted does not last as long as natural immunity from getting the virus and requires boosters to keep up the immunity. Or the fact that some percentage of children have very bad reactions to vaccines (I do not mean autism).

Taking a simplistic view of vaccines good, people who don't vaccinate bad does nothing more than polarize the issue.

Also, I can't see to find the source of your statement:

"For the rest, it is because their parents chose not to have their children vaccinated due to their fears about the vaccine/autism connection"

The articles states that none of the 11 were vaccinated. But it does not give any reason why.

But ignoring all of that, having an organization that is supposed to rely on evidence based medicine looking to recruit families to be spokespeople just leaves a bad taste in my mouth. If they want to engage in that sort of campaign then their credibility is going to go into the toliet.

John Bowdige said...

Like many people that deal with autism on a daily basis, the thought of "why my child?" has crossed my mind. It is just that reason that I read extensively, not only research papers, but blogs and personal accounts as well. Though I can appreciate and understand the AAP's position, it should not be taken as absolute. There is a very interesting article here by Neal Halsey, a very influencial pediatrician where he questions the data that he has seen and considers the consequences significant (this is a safe conclusion even considering the errata at the end of the article).
I, myself, have read many articles on both sides of the debate and have distilled it down to, what is for me, the true essence of the question: Thimerosal contains mercury, mercury is known to be detrimental to neural health and functioning, and health in general, and, therefore there is NO excuse for it to be used. Many ,if not all, modern vaccines can be obtained with out it, and many may no longer have it (admittedly I am no expert in this area), but let's frame the question and debate appropriately and not detract from the issue. Let us not waste any more time and research on this question, there are other things to concentrate on. I am not indicating that public health is not an important issue, I just mean this question, to me, seems easy to overcome and remove from the equation of autism and "causality".

Sappho said...

John, you have a sensible view. I'm gad they aren't putting mercury in vaccines anymore. Autistic people continue to be born and they grow up autistic despite the lack of mercury. Had removing mercury caused autism to disappear, fine. But it didn't. I'm more interested in services for autistic adults like my son than in arguing with anyone.

Steve D said...

MJ -
You are right about the article not stating that the parents' choice to not vaccinate their kids is tied to autism fears, but it is very strongly implied. Regardless, I have changed the wording of my post slightly to reflect that.
You said:
"Taking a simplistic view of vaccines good, people who don't vaccinate bad does nothing more than polarize the issue."
I do not take a simplstic view, but this is simply a short post to talk about the AAP's letter. I'd be happy to enter a more involved discussion. And, though it is not simple, I do feel that vaccines are a tremendous boon to the human race, and that people who choose not to vaccinate their kids without valid reasons are ignoring an important societal responsibility.

Regarding this comment:
"...having an organization that is supposed to rely on evidence based medicine looking to recruit families to be spokespeople just leaves a bad taste in my mouth."
Their media efforts have nothing to do with EBM - they are two separate issues. I think they are simply being realistic in that they have to fight fire with fire, so to speak. I don't really understand this criticism of the AAP.

Steve D said...

John -
Regarding Neal Halsey, please note that the article you linked to was written in 2002. That was very soon after TCV's were pulled. The most recent data from CDDS shows a still-rising number of cases of autism being reported in CA. This would have assuaged any fears Halsey had, as the increase in numbers was his reason for questioning vaccine safety to begin with.
You then said:
"Thimerosal contains mercury, mercury is known to be detrimental to neural health and functioning, and health in general, and, therefore there is NO excuse for it to be used."
First of all, the dose makes the poison. Mercury is part of our environment, and simply cannot be avoided. This does not mean that we are all mercury-poisoned.
Secondly, Thimerosal was removed from all childhood vaccines (except the flu shot) in 2001. So I agree with you that we should move on past this issue.

John said...

Hi Steve,
I agree that the article I referenced is somewhat dated, though I think it is important to note for historical reasons. If someone of Halsey's stature and involvement in the vaccination program could question the data he was seeing at the time then it makes the matter less easy to brush aside. Though, as you mention, the recent CDDS data should remove even this, I think logical, reservation.
I do, however, disagree with your last point regarding the toxic nature of mercury. I do agree that "the dose makes the poison", however I see this in the same way I see the larger question I addressed in my previous comment. Just because something is a natural element within our environment does not make it OK to inject or otherwise expose people to needlessly. Generally, we take the position that things that are known to be toxic should be avoided at every opportunity (I'll get off my soapbox now).
I'm sure we could on about the subject but I just thought I would and my $.02 (that's Canadian by the way). I have only been reading your blog for a short time but enjoy it very much, keep the posts coming!
John

MJ said...

Steve you said:

"I do feel that vaccines are a tremendous boon to the human race, and that people who choose not to vaccinate their kids without valid reasons are ignoring an important societal responsibility"

You raise some important issues where which I think goes to the heart of the debate. The choice to vaccinate, like all medical decisions, should be a personal one. A person should never have an unwanted medical treatment shoved down their throat. As far as it being our responsibility to society as a whole, I just can't buy that. If someone else elects to be vaccinated and I don't all that means is that I am more likely to contract the illness than they are.

"I don't really understand this criticism of the AAP."

The AAP and organizations like it are supposed to impartial scientific bodies. I think that one of the main reasons why this debate won't die is that these organizations are having a credibility problem.

They have been saying over and over again that studies show this or don't show that yet people do not believe them. So what they need to do is regain credibility.

Now ask yourself, how is an emotional PR campaign going to help restore their credibility?

At best it will leave it about the same - those people who already believed them will continue to do so, those that don't won't and more.

At worst it will erode the belief that is still there. This is much like the way that not many people believe corporations anymore when they deny something. As a matter of fact, it seems the more that the company denies something the more that people believe it.

So if a company was in the middle of denying some allegation and then came out with commercials featuring "real" people who also were trumpeting the same line, would you be more or less likely to believe it?

“First of all, the dose makes the poison”

A hundred years ago we thought that lead wasn’t that much of a problem. Ten years ago we knew it was but thought we knew the “safe” level. Over the past few years the level that we thought was safe is proving not to be. So what is the “safe” dose here?

Steve D said...

Hi John -
Thank you for the nice compliment, and I also enjoyed looking at your website today. You have a real trove of information there, all in PDF format. Very useful - even though I may disagree with some of the content.
I'm glad we agree to a point on the issue that Halsey's concerns have not materialized. I think the broader point you may have been trying to make is that there can exist very legitimate concerns about vaccines (among other things) and that nothing should be above scrutiny. I wholeheartedly agree, but with a caveat. Our scientific community has limited resources, and can only spend so much time spinning its wheels on such an overdone topic. I think there is a moral obligation to move on at some point, a "breaking point" beyond which money is needlessly being thrown into a hypothetical black hole, when it could be spent on more productive pursuits (such as improving the likelihood of a positive outcome for autistic individuals). I realize this is a simplistic, schoolboy either/or, but without my going into a long essay I hope you see my point.
Lastly, thanks for adding your CA .02. Unfortunately, its only worth .015 here :)

Steve D said...

MJ -
First off, thanks for taking the time to comment and discuss here. I respect your opinion and the way you choose to express it.
You said:
"A person should never have an unwanted medical treatment shoved down their throat. As far as it being our responsibility to society as a whole, I just can't buy that. If someone else elects to be vaccinated and I don't all that means is that I am more likely to contract the illness than they are."
I must say that I disagree in the strongest terms.
Let me offer a hypothetical circumstance. You are the parent of a young child who has a severe immunological disorder, one that precluded her from receiving vaccines. You purposely keep her out of uncontrolled environments to minimize pathogen exposure. But you can't always keep her isolated - there is life to live. One day you take her to Whole Foods to shop for some fruit. Unbeknownst to you, you pass a child in the aisle who is in the early stages of a measles infection. This child is plenty healthy to have received a vaccination for measles, but his parents chose not to have him vaccinated because they had seen a full-page Generation Rescue ad in USA Today claiming that vaccines cause autism, ADD, etc.. Your child contracts measles in Whole Foods that day, and goes on to suffer severe scarring of her retinae, resulting in permanent blindness.
You never had the choice to vaccinate her, you were relying on other people to be responsible in their vaccinations.
If this "hypothetical" seems outlandish to you, please re-read the article I linked to, which says:
"One of the latest victims is an 8-year-old who may have spread the measles virus during a visit to Whole Foods Market in Hillcrest and later to a Cirque du Soleil performance at the fairgrounds. "

As far as your point about the AAP, I think you are actually supporting my position that they are making a good move by asking for the help of parents who support the findings of the scientific community over those who rely on popular media and internet fringe groups to make their medical decisions.
You said:
"They have been saying over and over again that studies show this or don't show that yet people do not believe them. So what they need to do is regain credibility."
Which highlights the point that some elements of the general public are willing to completely ignore the scentific consensus. This is frightening, but thanks to such intellectual luminaries as Dierdre Imus, RFK, and Jenny McCarthy, it is a situation that must be recognized and addressed.
So, if you must convince a portion of the public who is willing to ignore scientific consensus, perhaps offering them parent testimonials will work! That, I think, is the strategy.
To me, what would be damaging to their credibility is if they changed their message in response to popular-media pressure. Instead, what they are doing is trying to broadcast the same message in a format more easily digested and regurgitated by "drive-by" media outlets.

john said...

Steve,
Thank-you for the compliment. I do not always agree with the content in our documents repository either, but that is not my intent in having it there and is covered, I hope, in my caveat on our homepage.

I very much agree with the crux of your response to my last post and have stated as much here . It is high time to move on from this "debate" to things of higher import that are not "beating a dead horse", and no I don't think your point is simple or schoolboyish and I can appreciate the brevity. That being said I would love to read something with more substance that would flesh out your position and why you disagree with some of my site's material, I love a good, intelligent discussion (though you will have to provide the intelligence).
I do think your analysis of the story you related in response to MJ's comment is somewhat "black and white". The reality is that you could have 100% of the population immunized against all known pathogens and this scenario, as tragic and heart-wrenching as it is, would still occur. It is often said in biological circles that we are in an ongoing biological arms race. It would be next to impossible to protect the individual with the impaired immunity indefinitely. The realm of possible infectious agents is too large and dynamic for this to be a reality.
I would hope you take my comments for what they are, an attempt at discourse and not an anti-public health stance. Obviously in light of circumstances you describe it is hard not to feel that the tragic loss of a child, for want of a simple vaccine, was for naught. But I might counter that it is folly to extend the argument to believe that these situations will never occur even with the boon to humanity that vaccinations represents. In the words of Charles Darwin "mother nature red in tooth and claw" which I take slightly out of context but I think fits with what it is I am trying to convey.

MJ said...

Steve,

Thanks for the kinds words, it is always nice to talk with people who, even though they may have different opinions, can have a rational discussion.

Regarding your hypothetical situation in Whole Foods - lets assume for the moment that the situation is as you are suggesting, that a child with an immunological disorder is accidentally exposed to measles from a child that was not vaccinated.

The main point I would make here is that what I think is most missing in this country currently is a sense of personal responsibility. While the situation you describe is tragic, especially since it might have been preventable, it cannot be the fault of the parents of the unvaccinated child that the other child contracts measles.

It may sound harsh but the parent's of the child who has the immunological disorder are the ones that decided to take their child into public. I would agree that as you say "there is life to live" but with that choice comes the responsibility of accepting the consequences of the action.

It would be different if the parent's of the other child knew that their child had measles or if they went out of their way to infect the other child - such as going to their home and deliberately trying to infect the other child.

I prove the point, I would ask you to consider different scenarios.

What would you say if the child was vaccinated against measles but contracted it anyways?

What would you say if the disease was one that didn't have a vaccine such as a cold?

What would you say if the child with measles also had an immunological disorder and therefore could not take the vaccine themselves?


"I think you are actually supporting my position that they are making a good move by asking for the help of parents who support the findings of the scientific community over those who rely on popular media and internet fringe groups to make their medical decisions."

I still think that it is a terrible move on their part. The reason that that some people (or at least me) do know believe what they are saying is not because they lack some parents publicly agreeing with them.

Most people who care about this issue are going to read the science behind what the public PR announcements. I think the current problem is because the existing PR says more than what the science actually says and that these organizations try to spin the studies to say something that they don't. A simple, "we think this is the case but aren't sure because we don't truly understand what is going on" would go a long way to alleviating some of the disbelieve.

Take for example this recent study:

Measles vaccination and antibody response in autism spectrum disorders.

This study was billed as yet more proof that there is no relation. Yet when you read the actual study what is really deals with is titers against the measles virus 9 years after the shots. There is a small check with 3 children using PCR (I think) that is in there solely so that it can be added to the PR billing - it certainly wasn't enough to influence the findings one way or the other.

What I counter balance this with is the fact that I know not everyone develops the immunity to measles from the shot. I know this because my wife, as part of her career as a nurse, was given several boosters against measles yet never developed the antibodies against measles (as determined by blood tests administered by the hospitals she worked at).

So when this study is spun into "no link between autism and mmr" that isn't really true - the study didn't say that. What it said is that in the (smallish) sample of autistic children that there was an appropriate level of antibodies against measles.

Please note that I am not trying to argue that the mmr causes autism - I am just using this study to illustrate a point.

So I don't think they need to change their message as you say, but rather not stretch it beyond what is really implied by the science.

If they go the other way and, instead of trying to prove the issue through science, trot out some parents that say "trust us, we believe it" it will only make the situation worse.

This issue is too important for the medical community to be trying to play it to sound bites.

I apologize for the length of my comment, it seems that once I start typing that I don't always know where to stop.

Steve D said...

John and MJ -
I apologize for the delayed response.

John - Well, I'm glad you have taken the time to assemble so much information and I expect that I'll be using it moving forward. And I'm glad we agree that monies could be better used beyond the current scope of the vaccine/autism debate. If research were to show that epidemiological evidence lined up with a plausible biological mechanism (as happened in the past with thimerosal), I would then support further research. Until then it is a dead issue in my view.

MJ -
I must say that I utterly disagree with your points about my (partially) hypothetical situation.
You said:
"The main point I would make here is that what I think is most missing in this country currently is a sense of personal responsibility. While the situation you describe is tragic, especially since it might have been preventable, it cannot be the fault of the parents of the unvaccinated child that the other child contracts measles.
It may sound harsh but the parent's of the child who has the immunological disorder are the ones that decided to take their child into public. I would agree that as you say "there is life to live" but with that choice comes the responsibility of accepting the consequences of the action."
So you are actually making this argument:
That personal choice about vaccines trump societal obligations to protect the most susceptible among us.
Wow. Unless you can offer me something incredibly fascinating and convincing to support this point of view, we're simply going to have to agree to disagree.
And I think you ought to consider yourself lucky that you don't have an immuno-suppressed child in San Diego right now, or else you LITERALLY would not be able to leave the house for the foreseeable future.