Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

7 Responses to “Strategic Plan: fact and fiction”

  1. Another Voice February 2, 2009 at 15:10 #

    The plan is full of very worthwhile initiatives; hopefully the single tracked minds will not be able to prevent the government from taking any action. In our current economic situation delays may result in a loss of funding.

  2. Club 166 February 2, 2009 at 22:23 #

    You expect Jenny Mc and others to be able to concentrate on more than one thing at a time?

    Green Our Research, I say!

    Joe

  3. Pediatrician February 3, 2009 at 00:18 #

    As a pediatrician who has followed this IACC process very carefully, let me thank you for your coverage. Let me clarify with some facts that have been ignored by the anti-vaccine groups like SafeMinds, Generation Rescue, TACA, etc..

    Vaccines were not excluded from the Strategic plan for 2008 – the final report issued last week. The funding for the vaccine studies pushed by Lyn Redwood were moved from the portion of the strategic plan that had funding recommendations to another portion of the document that indicated that we should work with the vaccine experts on the NVAC (the HHS group that works with vaccine research) during the first part of this 2009 strategic plan effort – beginning this Wednesday Feb 4, 2009. The reasons for the change were as follows:

    1) The IACC does not have vaccine research experts, and the IACC needs to work with the vaccine experts on the NVAC to address some of the parents’ concerns. Federal committees need to communicate about research, something that Lyn Redwood doesn’t want to happen. She hopes to destroy the process, and then blame the process.

    2) The autism research experts recommended all of the items in the IACC strategic plan, with the single exception of the vaccine items that Lyn Redwood inserted at the end of the process – bypassing the scientists. The IACC wishes to encourage an environment in which science takes the lead, and parents have input. Lyn Redwood is an idealogue who tries to push scientists, and then threatens them when they do not agree to all of her demands.

    3) Some of the items pushed by Lyn Redwood and Safeminds are not possible (e.g., tissue models for autism), or could not be costed out, as the experts in the field were not engaged.

    On Feb 4, 2009 the IACC will have its first direct interaction with the NVAC to address these issues.

    The scientists who are experts in autism, have been threatened, and many have received death threats when they disagree with the extreme positions of SafeMinds. In fact, the reason I do not use my name is that I have been targeted with death threats by these anti-vaccine groups.

    These anti-vaccine groups do not care about children or adults with autism. They do not care about anything but their anti-vaccine agenda, and if people with autism are hurt as they pursue their agenda, that is fine with them. They have attempted to destroy the careers of scientists whose study results do not agree with their beliefs.

    Because of the threatening environment surrounding autism research, many great young minds are not entering the field. Who is to blame? SafeMinds and their cronies, who are very rich and well-connected.

    Autism parents, wake up! You have been fooled and are being used by a group of radical anti-vaccine groups who use their money, position, and terror to get their way. They don’t care if your children are denied research that will help them, as long as they keep their agenda in the news and have a chance at big money in court.

    Vaccines don’t cause autism. Vaccines attract anti-vaccine radicals, who are abusing the autism community.

    Multiple studies have made it clear for a long time that vaccines don’t cause autism. It is time to move on. Yet, we in science and medicine can’t move on unless parents gain control and marginalize groups like SafeMinds.

  4. Sullivan February 3, 2009 at 01:16 #

    Pediatrician:

    Thanks for the comments. It is definitely worth noting that removing the “inititiatives” does not remove all vaccine activity. The “inititiatives” are budgeted project ideas that will be used to attract researchers to the projects.

    I.e. an inititive is used to get funding. Then the NIH, NIMH, CDC or the like will request research proposals on the idea. If (and only if) good research proposals are submitted and approved, then the research will commence.

    That is worth noting–they are not “funded” as the budget is not yet approved, and the funds not yet appropriated by congress. This is another fact that is misrepresented by the vaccine-orgs.

    The vaccine initiatives were added in December–way past the time when almost all of the initiatives were approved through proper channels. The vaccine initiatives have not, as you note, been approved by science subcommittees.

    It was inappropriate to add them when they did. Given the fact that SafeMinds represents a number of vaccine litigants, it was incredibly inappropriate to attempt to get vaccine initiatives inserted into a government document from the HHS.

  5. Another Voice February 3, 2009 at 21:04 #

    Someone identified as “pediatrician” stated that the IACC final report was issued last week.

    Can anyone supply a link to this final report?

  6. Sullivan February 3, 2009 at 23:12 #

    “report” may not be the best term. There are drafts of the Strategic Plan that include the edits and the information about the edits. The copy I have does not include the edits made in the January meeting, which Pediatrician is referring to.

    The discussion from the meeting notes that they were going to continue to discuss the vaccine issue–just not include the budgeted initiatives at this time. They plan to bring in vaccine experts to both advise on the feasibility of the studies proposed, and on whether other agencies may be doing the studies proposed.

  7. Another Voice February 4, 2009 at 00:33 #

    @Sullivan

    (“report” may not be the best term. There are drafts of the Strategic Plan that include the edits and the information about the edits. The copy I have does not include the edits made in the January meeting, which Pediatrician is referring to.)

    I am looking at an August 15, 2008 draft of the IACC Strategic Plan, I am not aware of another being published. Has another version been published? I am not sure of what report peditrician was referring to as “issued last week”.

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