We got the following press release this morning from the National Autism Association, a group Sarah and I belong to. I get missives from them almost every day but thought this one was worthwhile to share. It’s about the new legislation pending to finally fund research into autism, but when I read it it seemed like it didn’t go nearly far enough and apparently the NAA thought the same thing.
Dear National Autism Association Members and Friends:
As you know, the Combating Autism Act of 2005 was first presented to us in July of this year for our review. After carefully analyzing the draft we were given, we were unable to support the bill as it was written. Our primary concerns were as follows:
- No mention of vaccines or vaccine components, as an area of study or in any other context, was contained in the bill.
- Adequate oversight of government involvement in steering research and management of data was not incorporated.
- Date of 2008 to begin research on environmental factors in the development of autism was delaying what should be a main priority in the research agenda.
- Funding for biomedical research was too low.
After several discussions among our board members and with others in the autism community, we submitted to the other groups assessing the bill an alternate version that included our suggestions. Following several teleconferences among our board members working on the bill, and further discussions with other organizations within our community, a new version of the Combating Autism Act has been written. In its present form, we believe the bill is now one we can support.
To address our first concern regarding the absence of language including vaccines, the bill has been revised to state, under Section 499B:
(b) Autism Centers of Excellence
(1) IN GENERAL- In carrying out subsection (a)(1), the Director of NIH shall award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding research on autism.
(2) RESEARCH- Each center of excellence that receives funding under paragraph (1) shall conduct basic and clinical research into autism. Such research—
(A) shall be conducted in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, endocrinology, gastroenterology, and toxicology; and
(B) should include–
(i) investigations into the cause, diagnosis, early detection, prevention, control, treatment, and cure of autism;
(ii) research on high-risk infant siblings; and
(iii) research on a broad array of environmental triggers which may have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).
Our second concern regarding inadequate oversight has now been addressed by the following three mechanisms that we believe will allow for greater transparency and integrity:
- Expanded IACC (Interagency Autism Coordinating Committee), a federal committee that meets twice per year to review and revise the Autism Research Roadmap. A minimum of 6 members, or one-third of the membership, must be from the autism community. Up until now, this membership has been discretionary, but passage of the Combating Autism Act will require that these positions from within the autism community be filled.
- Formation of an Autism Advisory Board, a panel comprised of scientists and members of autism advocacy groups formed for the purpose of peer review of research grants.
- Establishment of a Congressionally Mandated Medical Research Program, which requires public participation in research funding decisions.
The third concern of delaying crucial environmental research until 2008 has been addressed by moving the date up to coincide with passage of the bill, effective in 2006.
Lastly, the funding for all research, including biomedical that we believe will provide the most meaningful answers for our children, has increased to over a billion dollars. While this figure includes all areas of research, the oversight mechanisms listed above will allow those in the autism advocacy community, including those emphasizing the critical need to address neurotoxic exposures, to have a hand in allocating funds.
Although this bill may not fully address the concerns of many in the autism community, we believe it to be a first step among many that will be necessary to meet the tremendous needs of individuals diagnosed with autism and related neurological disorders.
In addition to lending our support to this legislation, we are urging Congress to declare a National Emergency regarding the autism epidemic, and to take the appropriate steps to address this epidemic that claims 100 children each day.
To adequately confront this national emergency, it is imperative that an official investigation of government malfeasance regarding the use of the mercury-based vaccine preservative thimerosal be set in motion immediately with Congressional or Senate hearings. This step must be taken to ensure that no stone be left unturned in determining the affects this exposure to mercury has had upon nearly an entire generation of American children, and to determine what role our regulatory agencies may have played in allowing such widespread and prolonged exposures to occur.
Furthermore, we are requesting a full investigation of the Institute of Medicine’s handling of the clinical research regarding thimerosal its Immunization Safety Committee members were entrusted with reviewing in 2004. We are asking that a new committee be convened to evaluate the research ignored by the IOM in 2004, along with the relevant research that has been published since the former committee adjourned.
The measure of a civilized society is the manner in which it treats its most vulnerable populations. If action is not taken now, this plague will only increase and so will the cost to our society.
The National Autism Association is prepared to support this legislation, and after its enactment, will closely monitor the policies and programs it establishes.