IACC Continues to Debate Vaccine Objectives in Updating Autism Research Agenda
by theresa wrangham
The October 23rd meeting of the Interagency Autism Coordinating Committee (IACC) produced little in the way of progress in updating the IACC's strategic plan for autism research. This was largely due to lack of direction provided to IACC scientific panel chairs and the 2 hours identified in the agenda to complete the task.
Overviews of changes the strategic plan for the committee's consideration were given for questions (panel) 1, 2, 4, 5 and 6 with discussion of question three (“What Caused This to Happen and Can It Be Prevented?')being tabled due to Lee Grossman's (IACC panel three chair) unplanned absence.
During the course of the committee's discussion, the science panels that met in September to assist the updating of the strategic plan were noted by IACC panel chairs as lacking in the expertise needed to update aspects of the research agenda. During panel three discussions, members of the scientific community on the panel noted that toxicological and environmental expertise was missing in this panel. This absence of expertise was noted by SafeMinds to the IACC and is in fact the second year that expertise has not been present in this panel to inform discussion and updating of the plan.
Surprisingly, IACC members Alison Singer, Ellen Blackwell and Cindy Lawler were very vocal in stating their concern during the meeting on the 23rd that edits submitted to the committee relating to panel three didn't reflect the panel's consensus. Ms. Singer went so far as to ask for notes she believed that Dr. Story Landis submitted prior to her resignation from the IACC in the belief that they would provide a more accurate account of panel deliberations. After obtaining a copy of the draft edits under consideration by the IACC, I believe that vaccine objectives inserted into the plan were likely the focus of Ms. Singer, Ms. Blackwell and Ms. Lawler's concerns.
As committee discussion continued, Dr Insel, IACC Chair, reminded the committee panel chairs that they could go back to their panels to assure the fidelity of panel edits added to the draft plan and the detailed discussion scheduled for November 10th. However, Dr. Insel stated that updating of the strategic plan was not limited to science panel discussions and that ultimately what ended up in the draft for the committee's consideration was at the panel chair's discretion.
Lee Grossman chaired the final panel three discussions on November 4th and stated to the panel that he was responsible for inserting previously removed vaccine objectives into the draft for the committee's consideration on November 10th. Disturbingly, no member of the panel discussed the fact that the National Vaccine Advisory Committee (NVAC) had also been requested by the full IACC committee to lend their expertise to the process in terms of vaccine research and its implications to the IACC's strategic plan. In fact, members of the scientific community present for the panel discussion disagreed on the gaps and objectives that Grossman had inserted into the plan, but in their silence on NVAC's participation didn't go so far as to dispute the NVAC findings and recommendations in this regard. Grossman also inserted the Congressional intent via the Combating Autism Act colloquy that vaccine research be done with Jeff Sell, also a panel three member, defending the intent of the Combating Autism Act (CAA) colloquy in stating that the research must be done when other panel members asked for this language to be removed. The end result of this final discussion with regard to vaccine language is at this point expected to be presented as a minority view within the panel when final edits are considered on November 10 by the IACC.
In having the privilege for the past year and a half of traveling from Colorado to Washington D.C. to represent the view of SafeMinds and the many voices in the community we represent I am extremely dismayed with the lack of urgency by the IACC to initiate aggressive research with a sense of scientific curiosity. This lack of curiosity and urgency is not limited to vaccine research in addressing the ever-growing autism epidemic.
However, vaccine research under consideration by the committee will again be subject to the whim of the majority of members more interested in policy than science, even though the expertise the IACC sought from the NVAC supports that it be done. Types of research (animal models/laboratory) were commented on by Dr. Lawler (NIEHS) as “bread and butter” in determining mechanisms and pathways during the October 23rd meeting, and yet no similar admission was made with respect to vaccine research called for by NVAC. In fact was discredited by Dr. Landis as unreliable during panel three discussion on vaccine research in September. The IACC appears to be grasping at straws in avoiding vaccine research and lack credibility in bringing appropriate expertise to the table in defining other necessary research goals.
In my last public comment I chose to ask the IACC specific questions regarding why federal members out voted public members supporting expansion in the number of environmental factors, biomarker and treatment objectives. I also questioned the apparent difficulty encountered by the CDC in deciding if the rise in autism was real and disbelief in the difficulty in counting those affected by autism when there is no apparent problem in counting 131 cases of measles. Also questioned were any real impediments in designing an ethical comparative population study of the vaccinated and unvaccinated, given former CDC Director Julie Gerberding's statement that such a study “could and should” be done. The IACC's indifference to overcoming “optics” and conflicts of interest in conducting vaccine research and the continued rhetoric by committee members with respect to recovery and improvements realized through biomedical treatment was also put into question in my comments to the committee on the 23rd.
It is no surprise that once again, public comment is not responded to, whether in person, or by RFI, by the committee. Answers to our many questions remain elusive. I believe there is a day coming when once again our community will out of necessity and due to this lack of urgency come together to reclaim leadership where it is so obviously lacking to aggressively respond to the needs of individuals struggling with autism. In the meantime, I encourage the community to continue to make their concerns and wishes known to the IACC as a matter of record and as a foundation to future action.
To view meeting proceedings and/or offer public comment at the next IACC meeting on November 10th, please visit http://iacc.hhs.gov/events/2009/full-committee-mtg-announcement-November10.shtml.
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