Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

37 Responses to “Why should the strategic plan include vaccines…”

  1. Schwartz November 14, 2008 at 07:57 #

    Are you saying you agree with the issues outlined in the letter?

  2. Tanners Dad November 14, 2008 at 08:41 #

    Again you can do much better than this post. If we had put those words in the letter you would have jumped up on your soap box and let loose.

    I have never really understood why you would not want it included. The more unbiased research that goes towards eliminating the Vaccine Autism connection can only help your position if your assessment of the situation is correct. At the end of the day, I agree with you that there are not enough dollars to do everything we need to do. So the focus first should be on Treatment and help for parents. See you are beginning to sway me to your side:)!

  3. TheProbe November 14, 2008 at 15:02 #

    Tanners Dad wants more *unbiased* researched. Sorry, Tanners Dad, but that would be the same thing as burning the money spent. The anti-vaccination cabal, as featured on AgeOfIgnorance, would not accept any research as *unbiased*, unless it agrees with them.

    Stop wasting money on finding the mythical link between vaccines and autism, and start spending it on treatment and support of families. Anything else is a waste of money.

  4. Patrick November 14, 2008 at 15:10 #

    And some people could do much better than claim research bias, which has pretty much become a conspiracy theorist canard.

    If IACC were to recommend more research, where would the funds come from? That same pool of money that is claimed to taint the existing research.

    If the above organizations, some of which do raise a good deal of funding, would have gotten out there and done the research in a manner that would pass peer review and make the respected journals then we wouldn’t be needing to hear this. Again, and Again, and Again.

  5. Another Voice November 14, 2008 at 15:44 #

    If these organizations find the strategic plan lacking, then perhaps the long speeches by members or their own leadership were counter productive. The three groups currently invited to be part of the IACC should be replaced on the planning group if eleventh hour whining is the best they can do. After all, this document has been circulating since August 15.

    They were unsuccessful as members of the planning group in helping to develop a document they could support. They were equally unsuccessful during the past three months of the comment period. Now they write a weak and nebulous protest letter.

    I hope that the government staff running this reaches out and attracts some new and effective people to represent our children.

  6. Joseph November 14, 2008 at 15:45 #

    I have never really understood why you would not want it included.

    This has been explained ad-nauseam. Resources are finite. Resources spent in dead end hypotheses are resources not spent in more fruitful endeavors.

  7. alyric November 14, 2008 at 16:34 #

    So, where’s this letter? There isn’t a link.

  8. Sullivan November 14, 2008 at 16:52 #

    Again you can do much better than this post. If we had put those words in the letter you would have jumped up on your soap box and let loose.

    Thank you for thinking I have the ability to do better posts. I think the one I did recently on Vocational Rehabilitation was reasonably good–at least in bringing the subject matter forward. I’m working on another piece where I think the subject is worthy.

    This one, as you can tell from the time-stamp, was a quick reaction to the publication of the joint-letter. Had the letter pushed for “vaccines” explicitly, it would have been a “dog bites man” story. But, GR putting out a letter that leaves “vaccines” and “epidemic” out? That is more of a “man bites dog” story.

    A letter by GR alone would almost certainly have included “vaccines” and “epidemic”. To me, this points to the conclusion that there isn’t broad support for those terms, even amongst the signatories of that letter.

    Or, to put it another way, if Safeminds–a signatory on the letter and an organization represented on the IACC–is content with this wording as covering the vaccine issue:

    Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

    Why should the IACC be required to go any farther?

    As to why I object to including vaccines in the strategic plan–because doing so would be a political statement and, as such, it would be inappropriate. The Plan doesn’t get into such details for other topics. For example, the one environmental subject singled out to be monitored is the one subject that has had the most scrutiny, and has not been found to be causal in autism. Yet, the other environmental topics in that same segment have had recent studies indicating a possible link.

  9. Sullivan November 14, 2008 at 16:55 #

    Alyric,

    Sorry, I tried to post a comment with the

    the letter is on this link from the Age of Autism blog.

  10. Sullivan November 14, 2008 at 16:55 #

    Alryric,

    sorry–here’s a link to the letter on the Age of Autism blog.

  11. Melody November 14, 2008 at 19:54 #

    “I think the one I did recently on Vocational Rehabilitation was reasonably good—at least in bringing the subject matter forward.”

    Yeah, I went to an orientation meeting today, and apparently there are states with waitlists in the thousands, where you have to wait a couple years.

  12. Sullivan November 14, 2008 at 20:27 #

    Yeah, I went to an orientation meeting today, and apparently there are states with waitlists in the thousands, where you have to wait a couple years.

    Wow. I need to look into that. From the sound of this, it is cost effective–even without taking the human element into effect.

    If we are putting people off for years in training, it sound quite “penny wise and pound foolish”

  13. Patrick November 14, 2008 at 22:03 #

    Thanks for the link to the document, it really helps!

    Point summary as I read the letter:

    a) Is toned down epidemic speak saying Why aren’t you writing this up as an emergency?

    b) Complains that they want to control ALL the authorized money. (Perhaps some research might occur that isn’t sole sourced by IACC recommendations, do they think they are the only ones capable of specifying proper research into the issue?)

    c) Says we want more in these specific areas… (none of which address supports across the lifetime of the untreatable.)

    d) Appears to be another bid to get that 11th hour oversight function established. (Do they want Volunteers that won’t reduce the pool of research money complained about in b? Or do they plan on hiring their cronies?)

    e) uses acronym SP which is not defined previously (it needs to be), and complains that the public comments solicitations did not allow important voices to be heard. Some specifics about who wasn’t heard could really help here.

    Perhaps someone can let me know what the “SP” is?

  14. Sullivan November 15, 2008 at 00:30 #

    Perhaps someone can let me know what the “SP” is?

    Strategic Plan.

    I like your summary–it’s much more brief than the one I’ve been working on, but has a very clear message.

  15. Kelli Ann Davis November 15, 2008 at 23:33 #

    “In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.”

    Sullivan:

    No one has “co-opted” your rights on anything. You are *one voice* among thousands and as I’ve said before, *no one* is stopping you from advocating for your child.

    Generation Rescue is an organization whose message resonates with tens of thousands of families and the fact that *you* don’t agree with that message does not effect what we’re doing one iota. Sorry to burst your bubble, but it just doesn’t.

    Best,

    Kelli Ann Davis
    D.C. Political Liaison, Generation Rescue

  16. Joseph November 16, 2008 at 00:45 #

    Kelli Ann: You really need to stop using the term “autism community” as if it described a group of people who have a particular set of views. The way it’s used is transparently dishonest.

    Either prove that 99% of parents of autistic children have a particular set of views, or stop using the term like that.

  17. Schwartz November 16, 2008 at 01:03 #

    Joseph,

    I must have missed it, aside from Sullivan, where did they use the term “Autism Community”?

  18. Grendel November 16, 2008 at 01:26 #

    Kelli, you are correct. Generation Rescue does not bother to co-opt the voices of individuals, it screams them down, including the voices of people who have autism, and parents and carers who have read broadly enough with an open mind to accept that while we would like to be able to ‘blame’ something – vaccines are not the trigger.

    The scientists who promote that side of the argument have been repeatedly discredited but the belief that vaccines cause autism has become an issue of faith among those that believe it and no rational explanation will settle the question for them – you go on trying to seek proof.

    Which leads to the next question – if (from your perspective) the link is proven, why do you keep calling for more research?

    I’m not in the United States, and I can tell you that the rest of the world observes the debate over there with bemusement as it is a non issue here.

    I have a question for Generation Rescue. The United States has vaccination levels lower than many other countries – and the vaccines we use are the same, why is the occurrence of autism fairly flat?

    In Australia just over 91.2% of all children 15-18 months have been vaccinated with the MMR vaccine(Source: Vaccine Preventable Diseases and Vaccination Coverage in Australia 2001-2002, released by the National Centre for Immunisation Research and Surveillance of Vaccine Preventable Diseases)

    In the United States the CDC reports only 81% of children under 3.

    Our rates of autism are the same.

  19. Schwartz November 16, 2008 at 01:43 #

    Grendel,

    Just looking at the Autstralian schedule, there is a huge difference in the second MMR shot (recommended at 4 years vs 18 months in US and Canada). It is also not concurrent with Varicella so there are more variables at play than just a simple vaccination rate.

    Also, when you state the Autism rates are the same, which state are you referring to since it varies widely in the US?

  20. Kelli Ann Davis November 16, 2008 at 02:16 #

    “Either prove that 99% of parents of autistic children have a particular set of views, or stop using the term like that.”

    Joseph and Grendel:

    You may want to check out this recent poll in Science Daily:

    http://www.sciencedaily.com/releases/2008/10/081003122536.htm

    According to the survey, almost 1 out of 5 people agreed with the statement “Autism is caused by a preservative once found in childhood vaccines.”

    So again, my point — Generation Rescue’s message resonates with tens of thousands of families and our advocacy work is on *behalf* of those parents and their children — not you.

  21. Joseph November 16, 2008 at 06:01 #

    According to the survey, almost 1 out of 5 people agreed with the statement “Autism is caused by a preservative once found in childhood vaccines.”

    And 38% said they believe there’s no link.

    So again, my point—Generation Rescue’s message resonates with tens of thousands of families and our advocacy work is on behalf of those parents and their children—not you.

    I’m sure it does. But the autism community is not tens of thousands of parents. It probably consists of at least hundreds of thousands of parents, hundreds of thousands of adult autistics and hundreds of thousands of autistic children. In the US. Around the world, we’re talking about millions upon millions of people who are part of the autism community.

    So why use the term “autism community” to refer to one sector of the autism community, as if it were representative of the autism world as a whole?

    For Swartz, who seems to doubt this actually happens, just Google “the autism community is united.”

  22. Schwartz November 16, 2008 at 06:09 #

    Joseph,

    I didn’t doubt it, I just didn’t find it in the letter. I see it in the blog.

  23. Sullivan November 16, 2008 at 06:37 #

    I must have missed it, aside from Sullivan, where did they use the term “Autism Community”?

    For starters, try the title of their blog post about this letter: Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research

    Kelli Ann,

    You keep making the same response.

    no one is stopping you from advocating for your child.

    which shows you aren’t reading what I am writing. I don’t state that anyone is stopping me from advocating for my child. But when your organization purports–as it does in the blog post discussing this letter–to represent the “autism community”, you are acting on my family’s behalf in a manner that is against out wishes.

    Generation Rescue is an organization whose message resonates with tens of thousands of families and the fact that you don’t agree with that message does not effect what we’re doing one iota. Sorry to burst your bubble, but it just doesn’t.

    Well, it’s good to know that you have such disdain for the effect of my advocacy.

    By the way, let’s turn your numbers around a little, shall we?

    First, “resonate with” is not the same thing as “we represent” tens of thousands of families. Or, “we have tens of thousands of members who approved of our message”.

    Second, using the numbers that your partner in this letter, Autism Speaks, uses, there are 1.5 million autistic people in the united states.

    Let’s take your “tens of thousands” and make that represent 50,000 people with autism (to be generous).

    That’s about 3%.

    You and your partners, SafeMinds, and ASA already hold two of 5 public seats on the IACC. 40% representation for what is, at most, a 3% constituency?

  24. Grendel November 16, 2008 at 09:44 #

    According to the survey, almost 1 out of 5 people agreed with the statement “Autism is caused by a preservative once found in childhood vaccines.”

    Kelli, such survey’s prove little for any purpose. For example about 20% of people (1 in 5) agreed to the statement “Aliens have visited Earth and abducted people”

    As I said – ‘vaccines cause autism’ has become a matter of BELIEF for many people, this does not make it true and worse, it diverts attention and resources from assisting families and creating a society that accepts people with autism rather than tries ‘fix’ them.

    Schwartz – immunization schedules do differ – in our state it is first MMR at 12 months and second at 4 years. The reason for this is to provide the best protection against MMR.

    However, this actually doesn’t change the fact that the autism rate (at the national level) is the same – regardless of rates of vaccination.

    The first suggestion that Autism was caused by vaccination occurred as a result of the timing of the shots occurring near the time that autism was diagnosed. If this link was something more than coincidence then the rate of autism would absolutely have to be tied to vaccination rates.

    It is not.

  25. Schwartz November 16, 2008 at 18:38 #

    Grendel,

    You make definitive statements about Autism rates which ignoring the critical detail that the published rates vary widely in the US. What exactly is the national rate in Australia and what year is the data compiled from? You’re ignoring the reality that a detailed prevalence is sketchy at best.

    Interesting comment about the MMR schedule. If the Australians are applying MMR at 12 months and 4 years (not concurrent with Varicella BTW) because it “provides the best protection”, then why is the US, UK and Canada applying it at 12 and 18 months? I would have assumed it was also to provide “the best protection”.

    You can’t just pick out a small slice of fact and apply it to the whole debate as a definitive argument. You’re brushing over tons of details.

  26. Kelli Ann Davis November 16, 2008 at 23:52 #

    “Or, “we have tens of thousands of members who approved of our message”.”

    And thus, the crux of the issue.

    Newsflash Sullivan:

    First, the advocacy work that I do is *FOR MY SON* first and foremost.

    Second, I don’t *need* to seek approval from tens of thousands of people to move forward.

    Third, when I do seek counsel, it’s from a few individuals who I trust and who share my message.

    Fourth, if people don’t *agree* with my advocacy work they can affiliate with a different group.

    Pretty simple.

    Let’s face it — your real *beef* is the fact that we are *successfully* advocating for our children and getting our message out and it kills you.

    As the saying goes: “Oh well, I hate it for you.”

  27. Grendel November 17, 2008 at 00:22 #

    Schwartz,

    Let me pose a question. Do the Autism rates in the United States vary in concert with rates of vaccination, and if so, why?

  28. Kev November 17, 2008 at 01:25 #

    Let’s face it—your real beef is the fact that we are successfully advocating for our children and getting our message out and it kills you.

    LOL….are you joking Kelli Ann? If you were successfully advocating your message why would you need to suggest a panel to oversee a panel? Why do (according to you) only 20% of people buy into your belief?

    If you were successfully advocating your position, the IACC would already be putting vaccines on the map. As it is, this letter – co-signed by over 50% single issue autism/vaccine pressure groups – hasn’t got the balls to even _say_ the ‘v’ word.

    This isn’t quite the last roll of the dice for you guys Kelli Ann but you really aren’t that far away 😉

  29. Schwartz November 17, 2008 at 02:11 #

    Grendel,

    We don’t really know. In the US they track vaccination rates quite accurately. Tracking Autism rates is another story altogether.

    Additionally, “rates of vaccination” is a not a single number per region. The vaccine schedule is quite extensive, so one would need to break it down into the many vaccine components.

    Of course another factor in some states is immigration. I can almost guarantee the Australian immigration rates are significantly different from the US as well.

    In fact, reading up on the state of Australian Autism prevalence, I’m seeing huge variances in numbers between some regions. Any idea why the rate appears to be 75% higher in SA vs WA?

  30. Grendel November 17, 2008 at 02:35 #

    Schwartz,

    In some circumstances variation may well be a matter of policy – for example, as I am sure you are aware, the autism spectrum includes a wide range of developmental points including the three main points of Aspergers Syndrome, Autism and Pervasive Developmental Delay. In some jurisdictions you are assessed as have ‘autism’ only if you have what some describe as ‘classic autism’ and this forms the basis of your access to services and also the reporting on prevalance. In other jurisdictions the definition encompasses a broader range of points on the spectrum and thus captures a bigger proportion of the population of people with autism.

  31. Sullivan November 17, 2008 at 04:23 #

    let’s face it—your real beef is the fact that we are successfully advocating for our children and getting our message out and it kills you.

    Well, that would be news to me.

    Let’s face it–I made a mistake in my calculations above. Using your numbers one can get a high estimate of 3% of the greater autism community that you “resonate” with. The mistake was that your coalition holds 60% of the public seats on the IACC.

    Put that way, yes, I think there should be a change in the way the IACC is being run. The changes I would favor probably don’t overlap with the changes you are lobbying for.

  32. Schwartz November 17, 2008 at 06:00 #

    Grendel,

    You are correct, I am aware of numerous possible confounders for the numbers. It just makes your statement about the prevalence rates and comparisons with vaccination rates in both countries look even more foolish that’s all.

  33. Grendel November 17, 2008 at 06:40 #

    No, actually I was wrong when I suggested that Autism is reported on the basis of policy. Services are provided on a policy determination of eligability but reporting of occurance occurs according to the rates of diagnosis using the DSM-IV diagnostic criteria. This is the same tool as is used for diagnosis in the United States.

Trackbacks/Pingbacks

  1. Autism Blog - » Blog Archive » Who makes up the autism community? - November 16, 2008

    […] a recent post, Sullivan asks why vaccines should be included in any strategic plan when […]

  2. Autism Blog - » Blog Archive » I object! (Part 1) - November 18, 2008

    […] to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important […]

  3. Autism Blog - » Blog Archive » I Object! (Part 2) - November 19, 2008

    […] yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include […]

  4. Autism Blog - » Blog Archive » I object! (Part 3) - November 20, 2008

    […] of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way […]

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