Story Landis, PhD, director of the National Institute of Neurodevelopmental Disorders and Stroke (NINDS), an NIH agency, surprised many parents on Friday by stating that autism researchers should study "the children who have been most profoundly affected" by adverse reactions to vaccination.
On Saturday, Dr. Landis abruptly resigned from the powerful Interagency Autism Coordinating Committee (IACC), which helps direct hundreds of millions in federal tax dollars to autism research, treatment, care and services.
In her letter of resignation, Dr. Landis cited embarrassing notes she had left behind after a recent meeting of the IACC that "triggered frustration and anger" among many autism parents; and for having "inadvertently introduced a distraction" from autism research. She did not mention her newfound support for vaccine-autism investigations in the letter.
Over the weekend, Dr. Landis wrote to IACC committee members:
I am very sorry that I passed notes to a colleague during the September 30 IACC meeting. It was unprofessional of me and I should not have done it. These notes were recovered after the meeting and posted on the Age of Autism blog. I understand how my comments triggered frustration and anger. Further, I inadvertently introduced a distraction from focusing on the important questions at hand. Therefore, I have decided to resign from the IACC effectively immediately. Again, my apologies to the other members of the IACC and to the autism community. I regret that my actions have eroded trust at a time when we need to build stronger ties across government and the community. Although I will no longer be a member of the IACC, I remain committed to finding the causes of and effective treatments for autism.
Meanwhile, on Friday I had written to NINDS to elicit more context for the rather cryptic notes that Dr. Landis had left behind after a recent IACC meeting. The notes, published at Age of Autism with commentary by Katie Wright -- the daughter of Bob and Suzanne Wright, cofounders of Autism Speaks -- seemed to speculate about the motives of one IACC panel member, Lyn Redwood, an autism parent and research advocate from Georgia.
One note read:
I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?
Lyn Redwood has long advocated studying the physical and biomedical symptoms found in many children with autism -- such as seizure disorders, encephalitis, immune dysregulation, neuro-inflammation, oxidative stress, mitochondrial dysfunction, GI disease, glutathione depletion, etc -- and their possible connection to vaccine injury and exposure to mercury from thimerosal.
To many parents, it seemed that Dr. Landis suspected Redwood of "pushing" the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.
The next thing Dr. Landis wrote was this:
Would be a good justification for looking at vaccine injured kids who have gotten awards.
That statement intrigued me. I agree with Dr. Landis that Lyn Redwood's "pushing" of multisystem disorders would be a good justification for looking at adjudicated cases in the federal vaccine injury program, in order to investigate the full range of clinical outcomes -- including ASD -- among those children who "have gotten awards" in vaccine court.
Ms. Redwood is not the only one who thinks this would be a good idea. Earlier this year, the National Vaccine Advisory Committee to the Department of Health and Human Services voted unanimously to recommend at least five types of studies involving vaccination and the causes of autism.
"A subset of ASD that might be usefully studied is the intersection of ASD cases with (medically recognized) adverse events following immunization, such as fever, febrile seizure, or hypotonic-hyporesponsive episode," the vaccine committee wrote in its report to HHS. "Some overlap will be expected by coincidence, and given the publicity of the autism-vaccination debate it will be hard to avoid reporting bias, but it would be worthwhile to assess whether adverse events following immunization correlate with risk of ASD."
HHS has stated that more than 1,300 childhood vaccine-injury cases compensated in vaccine court have involved encephalopathy (brain disease), seizure disorders, or in most cases, both diagnoses. But HHS cannot tell us how many of those 1,300 children also happened to have an ASD, because those are not figures that the agency routinely tracks, according to CBS News.
So, the federal government has a current database of more than 1,300 known and adjudicated severe vaccine reactions in young people. Why wouldn't one want to see how many of them also have an autism spectrum diagnosis? The current US estimate is 1-in-100 children, so one would expect to find about 13 kids in that study cohort. If the numbers are significantly higher than that, after trying to control for reporting bias, then further investigation might be warranted.
But was Dr. Landis agreeing with Lyn Redwood (and the NVAC) that there was a "good justification" for studying these kids? Or was she -- as many parents interpreted the note -- mocking the mother of a child with autism for being greedy and litigious?
I wanted to go directly to the source, so I wrote to NINDS, asking for clarification and more context. To her credit, Dr. Landis furnished the following statement:
I can understand people's reaction seeing just the note that I wrote during the recent IACC scientific workshop. I felt it important to apologize immediately to the autism community, which I did at yesterday's IACC, subcommittee meeting. Let me repeat my apology for the record: "I have seen some thoughts that I jotted down during the recent IACC meeting posted on Katie Wright's blog. I am very sorry that my personal reflections during the meeting have been taken out of context and have been interpreted by the community in ways that I would never intend. As a responsible and committed member of the IACC I am sorry for the upset that it has caused and the concerns that it has raised."
Fair enough, and quite gracious, as well, in my book. And then came the part that surprised me:
The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.
A lot of people I have spoken with were also surprised by the statement, given the general hostility toward vaccine research they have encountered at the IACC. And it is more than a bit ironic that President Obama -- who has vowed to find the "cause' and "cure" for autism -- now has a vaccine committee that wants to study autism; but an autism committee that doesn't want to study vaccines.
It would be great to hear Dr. Landis elaborate on her statement about "children who have been most profoundly affected by their response to vaccines" and, to that end, I have asked NINDS for a follow up interview.
For one, I would respectfully inquire why she did not publically share her privately jotted thoughts on how "important" it is for autism researchers to study vaccine-injured children. But I would also want to know what Dr. Landis thinks about the National Vaccine Advisory Committee report.
The vaccine committee was also particularly interested in the possible intersection between vaccination, mitochondrial dysfunction and autistic regression. "A small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning," the NVAC report says, "possibly including developing ASD, subsequent to live virus vaccination."
Immunization "almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations," the nation's leading vaccine safety experts concluded. "Recent developments around mitochondrial dysfunction reinforce the importance of studies of adverse events following immunization in rigorously defined subsets of the ASD spectrum."
Now a new, admittedly small study in the Journal of Child Neurology shows just how important the mitochondrial field of inquiry may be. Researchers looked at 28 children with ASD and mitochondrial disease and found that 17 of them (60.7%) had gone through autistic regression, and 12 of the regressive cases happened following fever. Among the 12 children who regressed after fever, a third of them had fever associated with vaccination, as was the case of Hannah Poling v. HHS.
Dr. Landis is not the first head of an NIH agency to support at least some type of vaccine-autism research. At an earlier IACC meeting, the representative from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) was the only federal member to abstain from voting to kill the study recommendation on vaccinated-vs-unvaccinated children. Shortly thereafter, Autism Speaks' Chief Science Officer, Geraldine Dawson, Ph.D., interviewed Duane Alexander, M.D., then director of the NICHD.
"One question [is] whether there is a subgroup in the population that, on a genetic basis, is more susceptible to some vaccine characteristic or component than most of the population, and may develop an ASD in response to something about vaccination. We know that genetic variations exist that cause adverse reactions to specific foods, medications, or anesthetic agents. It is legitimate to ask whether a similar situation may exist for vaccines," Dr. Alexander said, adding that the trigger might be, "some adverse or cross-reacting response to a vaccine component," or a "mitochondrial disorder increasing the adverse response to vaccine-associated fever."
On October 1, Dr. Alexander stepped down as NICHD Director to become a senior scientific advisor to the Director of the NIH's Fogarty International Center, to work on reducing maternal and infant mortality and morbidity in the developing world.
I was hoping that Dr. Landis would continue at the IACC in Dr. Alexander's path of advocating for these important investigations. But now those hopes will be placed on her successor.