Managing Editor's Note: For information to join the conference call tomorrow, click HERE. Pre-registration is strongly recommended for the Science Workshop and registration information may be found HERE.
By Theresa Wrangham
As the Interagency Autism Coordinating Committee (IACC) prepares for their upcoming Scientific Workshops (HERE) at the end of the month to inform the updating of their Strategic Plan for Autism Spectrum Disorders Research (HERE), a series of conference calls (HERE) to prepare for the workshops are being conducted and are open to the public on a listen only basis.
As we reported in our last newsletter, IACC Public Member and SafeMinds Director Lyn Redwood (HERE) is not the IACC representative for the panel addressing the strategic plan question “What Caused This to Happen and Can It Be Prevented?” and instead Autism Society of America (ASA) CEO and IACC Public Member Representative Lee Grossman and Jeff Sell were elected to the panel.
To their credit, during last week's call when it was apparent that the subject of the environment as it pertains to vaccine safety research would not be introduced by others on the panel, Jeff Sell opened the door to discussions. Unfortunately, its introduction occurred very late in the course of the meeting and as a result did not receive the full discussion it merits. Tomorrow's conference call is the last prior to the workshop. The monumental task to reinstate vaccine safety objectives improperly removed from the strategic plan in January will fall to ASA, specifically Lee Grossman and Jeff Sell. SafeMinds suggests these points to Lee and Jeff to assist in making the argument:
• Congress tasked IACC with finding the causes of and treatments for autism. Vaccines were the only cause specifically singled out in the legislative history. The IACC is required to develop an annual strategic research plan and budget to accomplish the mission set by Congress.
• The Vaccine Injury Compensation Program (VICP) has compensated vaccine injuries leading to an ASD diagnosis, as well as the Government having conceded numerous cases of vaccine-induced ASD. The question is thus not whether vaccines "can" cause autism. Instead the questions that remains is how many children are affected, how can new cases be prevented and/or existing cases treated;
• Obtaining baseline data on the health of unvaccinated (and alternately vaccinated) children is the most obvious first step in filling crucial safety research gaps, however, considerable research is also required to determine the mechanism of what is most likely an immune/autoimmune reaction to vaccines.
• The IACC is aware of the results of the NVAC's review of the CDC's Immunization Safety Office (ISO) Draft Research Agenda that identified crucial gaps in safety science that have implications for the IACC's Strategic Plan as follows:
- Comparing health outcomes of vaccinated vs. unvaccinated (and alternatively vaccinated) children – a research objective removed in January prior to the NVAC's findings. The objective as written in the plan - Question 3, Short-Term Objective 5: Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated and alternatively vaccinated groups by 2011. Duration 2 years, budget $10 million.
- Animal studies similar to the research objective removed in January from the IACC's Strategic Plan - Question 3, Short-Term Objective 4: Study the effect of vaccines, vaccine components, and multiple vaccine administration through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Duration 2 years, budget $6 million.
• The majority of the IACC’s public members acknowledged the public's wishes expressed via RFIs received last year, and supported by the previous science workshops and strategic planning workgroup that informed the original strategic plan for the inclusion of vaccine safety research. Previously approved vaccine safety research objectives that are now also supported by NVAC must be restored to the agenda;
• IACC has a statutory obligation to integrate other vaccine safety research objectives within the NVAC report that specify ASD as an outcome and that are not encompassed by the previously approved objectives must be integrated into the strategic plan;
• Individuals with autism may well represent a “genetically sensitive population” indicated in the IOM 2004 report for whom adverse vaccine events must be investigated.
• The level of difficulty in performing any of the above vaccine safety research is not an acceptable reason for not attempting to conduct the research. It is unethical to not pursue this line of inquiry, given the identification of safety gaps and recommendations to remedy them.
• Distrust of vaccines continues to rise due to the refusal of government agencies to address these acknowledged gaps in science. It is ethical to close the research gaps that will allow for a better understanding of the risks and benefits of vaccines as they pertain to autism and/or other possible vaccine injuries that result in undesirable health outcomes outside the scope of infectious disease.
Other opportunities for research to understand the role of the environment in autism that should be integrated into the plan are as follows:
• Establish use by the National Institute of Environmental Health Sciences of existing data gathered by the National Center for Environmental Health and the National Health and Nutrition Examination Survey; the purpose of this would be to establish reference ranges to be used by physicians and scientists to determine unusually high toxicant exposure levels within individuals and/or groups, identify toxicity levels within the population, and determine environmental changes by tracking exposures over time;
• Conduct body burden studies on individuals with autism spectrum disorders that would investigate the toxic load of toxicants such as mercury and aluminum, their effects alone or in combination, and synergistic effects when combined with other toxins or viral or bacterial agents;
• Expand existing objectives investigating biomarkers and treatments with an added focus on the identification of comorbid disease states (immune system abnormalities, inflammatory bowel disease, oxidative stress, etc.).
SafeMinds will update the community on discussion outcomes from tomorrow in our newsletter on Thursday. We support ASA's actions to accomplish the research outlined above that is critical in unraveling autism's causation and prevention. For information to join the conference call tomorrow, click HERE.
Pre-registration is strongly recommended for the Science Workshop and registration information may be found HERE.
Theresa Wrangham is the mother of Rachel, a teenager who is diagnosed with PDD/NOS, and Deanna. She lives in Colorado with her husband, Scott. She brings to the fore an experienced parent's perspective on raising a healthy child affected by ASD and the benefits of advocacy outside family needs. Theresa was appointed to the Board of SafeMinds in 2007 and currently serves as president. She served as a past Board Member with the Autism Society of Colorado and co-founded the Autism Society of Boulder County (ASBC), serving five terms as president. She is currently the immediate past president. Theresa is also the Director of Educational Development and Conference Liaison for the US Autism & Asperger Association.