Politics of Mitochondrial-PDD

15 Aug

For most people reading this blog, the story of Hannah Poling is very familiar. She was diagnosed with a condition called “Mitochondrial-PDD” by Richard Kelley of the Kennedy Kreiger Institute (*according to the document David Kirby blogged)

That, of course, is not what makes her well known. A year ago, I doubt many if any readers here would have heard of Mitochondrial-PDD. What makes her well known is that her case before the Federal Court of Claims (the “vaccine court”) was conceded by the U.S. Department of Health and Human Services (HHS).

What did they say? According to David Kirby’s post:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The HHS conceded that vaccines caused an injury. In specific, the injury was an “aggravation of an underlying mitochondrial disorder”

It’s worth asking a series of questions at this point, I think

Q) Do all mitochondrial disorders result in autistic features or autism?
A) No.

Q) Do all the children in the 30-child study have vaccine injury?
A) No. It appears that Hannah Poling is unique in that group.

Q) Is mitochondrial medicine a highly specialized field?
A) Absolutely.

Q) Are autism doctors/researchers experienced with mitochondrial disorders?
A) Only a few, and not likely to the depth that the mitochondrial doctors/researchers are

Q) Is anyone going to look at the potential role of vaccines with mitochondrial disorders?
A) Yes.

And that is a key point that deserves some extra attention. Dr. Poling in his letter to the NEJM noted that

Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders.

In doing so, he cites the Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda: Draft Recommendations.

Which states:

CISA has formed a working group to identify key research questions and consider study methods related to mitochondrial disorders and immunization, in collaboration with partners.

CISA being the “Clinical Immunization Safety Assessment (CISA) Network”

The document further states as the first lines of the first two bullet points under this proposed study:

Mitochondrial disorders are a heterogeneous group of disorders characterized by impaired energy production.

and

Children with mitochondrial disorders commonly present with a range central nervous system findings.

*Again, note that autism/autistic-features are not the only outcome of mitochondrial disorders.

*I think this proposed study is a good idea. The government has conceded a case, mitochondrial doctors state that the question is open as to whether vaccines could be a stressor that causes a metabolic crisis.

People are pushing for this to be a part of the IACC’s Strategic Plan.

Why?

A group of people, experts in vaccine safety studies, are already going to look at the whole question of the potential role vaccines and mitochondrial disorders. Why carve out the even smaller subset with autism? Or, to put it more directly, why call for a second study, and, at the same time, leave out people who don’t have autism?

The answer is simple: politics. People want the idea of vaccine induced autism in the Strategic Plan. To do so, they are willing to ignore the fact that the study is already being planned and, worse, they are willing to sacrifice a large segment of the potential target population.

It’s just not right. Let the correct groups do the correct study. It’s in the planning stage. If people really care about the question of vaccines potentially causing crises in people with metabolic disorders, support the CISA study.

Why do I have a feeling this isn’t going to happen?

* added on edit.

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4 Responses to “Politics of Mitochondrial-PDD”

  1. Socrates August 16, 2008 at 00:15 #

    This may be of some relevance “The Mitochondrial DNA A3243A>G Mutation Must Be An Infrequent Cause Of Asperger Syndrome” Chinnery et al. 2006. Full text available at http://www.autismresearchcentre.com

  2. Kev August 16, 2008 at 00:29 #

    Interesting Socrates, that’s the same author who did the recent study claiming that mitochondria dysfunction was at a higher prevalence than first thought.

  3. Socrates August 16, 2008 at 19:36 #

    I’m not much of an amatuer scientist but the difference between a mutation causing AS and the disfunction the yanks are talking about, causing regressive autism seems significant.

  4. RAJ August 17, 2008 at 20:21 #

    The association of ‘autism’ and mitochondria dysfunction has been long recognized:

    http://www3.interscience.wiley.com/journal/120835851/abstract

    Like all genetic associations, other groups have failed to replicate the finding. Most groups who looked at the specific gene involved (SLC25A12) have failed to replicate the finding in autism not confounded by mental retardation (eg Asperger Syndrome).

    Like most genetic findings, genetic variants are associated with mental retardation, not autism, although a subgroup of mentally retarded indiiduals with the mutation have enough isolated secondary symptoms to qualify for an ASD diagnosis.

    The presence of a genetic variant does not prove genetic transmission either. Most genetic variants, especially copy number variations are associated with either susceptability (micro-deletions) or resistance (micro-additions) to specific diseases:

    http://www.springerlink.com/content/6jn27n7422873013/

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