Update: Dear Members of the IACC:
Attached is a letter (HERE) from the autism advocacy organizations listed below regarding the draft strategic plan for autism research, respectfully submitted for your attention and review at your meeting tomorrow, December 12.
Sallie Bernard, on behalf of -
Autism Society of America
National Autism Association
Talk About Curing Autism Now (TACA)
By Jim Moody, Esq.
The federal Interagency Autism Coordinating Committee (IACC) will meet this Friday, 9-4 at the Neurosciences Center (home of NIMH) in Rockville, Maryland. This is a continuation of the November 21 meeting because there was not enough time to go through the substantial edits and additions (most of which were submitted by IACC member Lyn Redwood, Safeminds, and broadly supported by the community) required to finalize the Strategic Plan for autism research required by the Combating Autism Act.
This is a crucial meeting as many of the topics to be discussed will determine whether the research spending will actually matter in in finding the cause and effective treatments for autism.
Registration is required for in-person attendance REGISTER HERE or to participate in the webinar CLICK HERE. For the second time, this meeting will be broadcast on a conference call: 888-455-2920, access code 3857872. General information about IACC, including charter, members, and documents can be found on its home page HERE.
The draft strategic plan HERE , background documents relating to development of the plan HERE, and the 148 public comments HERE received in September can be reviewed online.
Most of the revisions and additions to be discussed will make the plan an aggressive response to the national health emergency presented by the autism epidemic. The present draft basically continues business as usual and failed to even propose spending the minimum authorized by Congress in the CAA, about $640 million over the next three years. Ten leading advocacy and research funding organizations (supported by many others) filed a letter (HERE) with IACC on November 12 calling for major improvements in the plan, including recognition of the research enterprise as an urgent response to a national health emergency, full funding as authorized by CAA, increased funding for environment and treatment research, establishment of an Autism Advisory Board, and measures to increase community decision making in research decisions, transparency, and accountability.
Necessary improvements in the Plan to be discussed during the meeting include the following:
– Research on the autism-vaccine link. This is where the discussion left off last meeting. Congress and both Presidential candidates have called for this as have numerous public comments and letters from the community. For example, an August 14 letter to IACC Chairman Insel from Autism Speaks explained:
Second, as we expressed in our letter of July 9, 2008, there are still several key issues advocated by the IACC, and included in the CAA, that are not represented in the current draft ofthe SP. Specifically, the CAA and several IACC members urged a stronger emphasis on environmental factors, gene-environment interaction, and prevention of autism. Of particular concern is that the SP does not explicitly mention that the investigation of the potential role of vaccines in the etiology of autism is needed.
As you are aware, many stakeholders in the autism community remain concerned about the potential role of vaccines in the etiology of autism. While the weight of the evidence does not currently support this hypothesis, several recent developments (e.g. Hannah Poling concession, Dr. Bernadine Healy statements) suggest that more research is warranted. In addition, the legislative history of the CAA very clearly states that more emphasis on exploring the role of environmental factors, including vaccines, is needed. We feel that scientific inquiry into the questions that many stakeholders have regarding the potential role of vaccines in the etiology of autism is the best way to ensure that confidence and trust in our vaccine program is restored and maintained.
– Appointment of an Autism Advisory Board broadly representing the community (scientists, clinicians, advocates) that would, for example, oversee implementation of the Plan and its annual updates.
– Recognition of autism as a national health emergency driven by a real rise in cases and calling for a crisis-level response. This is an important point because President-elect Obama has stated his belief that the rapid rise in autism cases is real and not just better diagnosing and has committed to appointment of a Special Assistant to the President for Autism Coordination.
– Reprioritize finding toward a greater emphasis on environmental causes (including vaccines) and treatment.
– Recognition of autism as a whole body disorder.
– Development of an innovative approach to environment and gene-environment research.
– Significant community involvement in decisions relating to research, modeled on the successful model employed by the Department of Defense autism research program.
– Recognition that treatment and recovery of function can be accomplished and should be a focal point for intensive research.
– Treating the CAA budget authorizations as a floor and developing a significant increase in the research budget driven by a cost of disease analysis and the opportunity to perform quality research.
– Funding process re-engineering (such as special emphasis panels for each of the 35
major projects, and “innovation” fund, and rolling deadlines) to ensure accountability.
– Immediate appointment of a broadly representative work group to ensure effective implantation of the plan.
The importance of this Plan cannot be over-emphasized. It (along with annual updates) will direct all federal autism research. Attendees and listeners should pay particular attention to how the six community members advocate and vote for the necessary improvements in the Plan.
Jim Moody is a Board Member of SafeMinds and the National Autism Association and chairs the government affairs committee of SafeMinds. He is the founder of Citizens for a Competitive Economy. Jim is a practicing attorney and is active in cause-related advocacy for children with autism.