Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

14 Responses to “Autism Speaks misleads the public on the IACC’s stance on vaccine research”

  1. isles November 12, 2009 at 03:37 #

    Autism Speaks has descended firmly into the camp of those who will believe anything as long as it’s negative about vaccines. And it’s really too bad. There are a lot of hardworking volunteers and celebrity fundraisers whose efforts are getting pissed away as Autism Speaks devotes its firepower toward the one thing we’re now pretty sure *doesn’t* cause autism.

  2. EmpowerAutism November 12, 2009 at 03:55 #

    It’s such a shame that the vaccine debate takes up so much airtime within the autism community. Regardless of where you stand on this issue, its very polarizing, and divisive for our community. Plus, most of what is written about vaccines online cites zero research, which just adds to huge blob of internet autism-conjecture.

  3. David N. Brown November 12, 2009 at 07:27 #

    Phantom quote… I thought so.
    Unfortunately, anti-vax grandstanding could get in the way of investigating the one question that hasn’t been answered thoroughly: whether autistics are at higher risk of adverse vaccine reactions.

  4. brian November 13, 2009 at 00:04 #

    “[O]ne question that hasn’t been answered thoroughly: whether autistics are at higher risk of adverse vaccine reactions.”

    That’s a good question, and to at least some extent the answer appears to be yes.

    Febrile seizures have a genetic basis; in particular, mutations in genes for various voltage-gated sodium channel have been linked to febrile seizures; such seizures are also more common in children with epileptiform activity, which is the manifestation of these types of mutation(s). Some vaccines (such as the whole-cell pertussis vaccine and MMR) appear to increase the risk for febrile seizures by several fold (vaccines are, after all, designed to provoke an immune response, which may include fever). You’ll recall that extensive legal action resulted from the fact that a number of children suffered febrile seizures following vaccination for pertussis and also suffered subsequent mental decline; it now seems plausible that those children had de novo mutations in a sodium channel gene, and that, rather than causing the problem, vaccination simply revealed the underlying issue: analysis of 14 individuals who suffered febrile seizures within 72 hour of vaccination for pertussis showed that all 14 had recognized epilepsy syndromes and 11 of 14 had a mutation in SNC1A, the gene most commonly associated with the appearance in a previously-healthy child of a severe form of epilepsy with subsequent psychomotor decline in the second year of life.

    Since epilepsy/epileptiform activity and febrile seizures are not uncommon in ASD, it isn’t much of a stretch to imagine that genetic problems similar to those implicated in the response to pertussis vaccination might also be revealed in response to other vaccines, including MMR. It’s not unreasonable to think that in such cases the “adverse event” (seizure following vaccination) is actually just another symptom of the underlying condition: the vaccine does not cause the problem, but kids at risk will suffer what seems to be an adverse reaction to the vaccine at the time when the underlying problem is revealed.

  5. Chris November 13, 2009 at 00:16 #

    brian:

    Since epilepsy/epileptiform activity and febrile seizures are not uncommon in ASD, it isn’t much of a stretch to imagine that genetic problems similar to those implicated in the response to pertussis vaccination might also be revealed in response to other vaccines, including MMR.

    First obvious question: Wouldn’t getting the actual disease cause a greater fever and more likely cause worse seizures?

    Second question: Why even speculate when neither the MMR nor the whole cell DTP has been associated with greater risk of seizures in larger epidemiological studies? See:
    Encephalopathy after whole-cell pertussis or measles vaccination: lack of evidence for a causal association in a retrospective case-control study.
    Ray P, Hayward J, Michelson D, Lewis E, Schwalbe J, Black S, Shinefield H, Marcy M, Huff K, Ward J, Mullooly J, Chen R, Davis R; Vaccine Safety Datalink Group.
    Pediatr Infect Dis J. 2006 Sep;25(9):768-73.

  6. brian November 13, 2009 at 01:25 #

    Thanks for your reply, Chris.

    For your first question: Although the disease might well cause a higher fever than the vaccine, I don’t know if that would be correlated with more severe symptoms or if merely reaching some trigger level might suffice. Perhaps this is known, but I don’t know it.

    For your second question: I was relying on this 2001 article:

    http://content.nejm.org/cgi/content/abstract/345/9/656

    While the more recent article you cited shows that there isn’t an association between those vaccines and risk of encephalopathy, the NEJM study looked at the risk of post-vaccination febrile seizures–not encephalopathy. I believe that there is no association between vaccination and encephalopathy–I hope that that was clear. However, I was I was intrigued by a plausible answer to a nagging question: as I recall, the 1991 Instutute of Medicine report indicated that, while there was no logical support for the idea that the pertussis vaccine caused enephalopathy, at the time there was no alternative explanation; now there is. You might be interested in these related articles:

    http://www.ncbi.nlm.nih.gov/pubmed/18093146?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2

    http://www.ncbi.nlm.nih.gov/sites/entrez

    [eidt by Sullivan—the last link is: http://www.ncbi.nlm.nih.gov/pubmed/16713920%5D

  7. brian November 13, 2009 at 02:12 #

    Oops.

    That last link should have taken you to this article:

    Berkovic SF, et al. De-novo mutations of the sodium channel gene SCN1A in alleged vaccine encephalopathy: a retrospective study. Lancet Neurol. 2006 Jun;5(6):488-92.

    • Sullivan November 13, 2009 at 02:16 #

      Brian,

      I made the fix in your previous comment. I can return it to the original if you wish.

  8. brian November 13, 2009 at 03:01 #

    Sullivan,

    Thanks for fixing that. (I think that PubMed’s new improved version no longer shows the link direct browser window.) Please feel free to delete my follow-up comment.

    • Sullivan November 13, 2009 at 05:23 #

      Brian,

      I always have problems getting Pubmed to give me a useful link. If someone with greater Pubmed Mojo can educate me on a direct way to get the correct link (rather than the entrez thing), I’d be very grateful.

  9. passionlessDrone November 13, 2009 at 04:11 #

    Hello friends –

    If the IAAC were to recommend studying succeptible subgroups for immune reactions, up to and including vaccines, I would consider this a very positive step forward.

    @Chris – The argument that getting the actual disease is worse than getting the vaccine misses a critical factor; the possibility of time dependent effects of immune challenges. Lots of kids, maybe near all of them, got exposed to these diseases at some point during their childhood in generations past, but now, nearly every child gets something designed to stimulate a robust immune response at 1, 60, 120, and 180 days from the womb. In the past, the outcomes for children who got pertussis at two months was very poor, but their percentages were very small compared to the percentage of children who are vaccinated at their two month well check up. If our focus is on immune activation, we’ve taken what used to be a bell curve and turned it into a straight line. I’m not certain we are clever enough to understand the impacts of this with our current suite of research.

    Of particular salience to seizures, you might want to check out, Postnatal Inflammation Increases Seizure Susceptibility in Adult Rats which found that rats challenged with LPS during specific developmental timeframes were more succeptible to seizures into adulthood when compared to than vehicle receiving counterparts. Even more interesting was that concurrent administration of tnf-alpha blockers negated the effect; it wasn’t getting sick, it was the immune response that was responsible for this. Our particular population of interest, autism, has been shown by many studies to produce elevated tnf alpha, and other pro-inflammatory cytokines at rates far higher than their undiagnosed peers.

    Other papers that illustrate lifelong time dependent effects of immune challenges are Early-life immune challenge: defining a critical window for effects on adult responses to immune challenge, Postnatal programming of the innate immune response, or Early-life programming of later-life brain and behavior: a critical role for the immune system

    Brian – You might want to take a look at some new research regarding the rolw of the immune system in seizures, again, especially considering what we know about the innate immune response in autism. Recent papers on this include Glial activation links early-life seizures and long-term neurologic dysfunction: evidence using a small molecule inhibitor of proinflammatory cytokine upregulation., The role of Interleukin-1beta in febrile seizures, Enhanced microglial activation and proinflammatory cytokine upregulation are linked to increased susceptibility to seizures and neurologic injury in a ‘two-hit’ seizure model , or The role of cytokines in the pathophysiology of epilepsy.

    I need to read more concerning calcium regulation and its impact. I’ll try to follow a couple of your links this evening.

    – pD

    • Sullivan November 13, 2009 at 05:18 #

      If the IAAC were to recommend studying succeptible subgroups for immune reactions, up to and including vaccines, I would consider this a very positive step forward.

      Apparently the IACC agrees with you. There is nothing in the plan that prevents someone from submitting a research proposal including vaccines. Such a proposal would have to be scientifically rigorous enough to pass peer review. Most of the research used to promote the vaccines-cause-autism idea are not of high enough quality in their design–they would have been rightfully rejected.

      If a proposal came through that passed review by reasonable NIH scientists, I’d be OK with it. What I don’t want is for people to try to circumvent the scientific process by mandating research that isn’t of good quality. This is what happened a year ago, when vaccine objectives were added to the Strategic Plan without being discussed by the science committees.

  10. Chris November 13, 2009 at 04:27 #

    Well put Brian,

    Glad to see I’m not the only one that reads the literature. I also thought the Berkovic paper was very important, but sadly the story if a little too complicated for the average person/media to understand the implications. b

  11. brian November 13, 2009 at 20:43 #

    Hi, Sullivan–

    I think the problem may be related to how the particular reference is identified in PubMed. I tried this in three different browsers (Internet Explorer, Firefox, and Chrome), and it seems that if you click on a reference within a list of articles identified via a search (e.g., autism AND MMR) the specific link will show in the browser; however, if you do a search that identifies only a single article (e.g., pertussis AND SCN1A) the browser lists only the “entrez” link. I think that’s what tripped me up when I tried to supply a link in my earlier post.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: