Thank Government Reform Committee for Autism Hearing and Share Your Testimony
From our friends at The Elizabeth Birt Center for Autism Law and Advocacy: The
Oversight and Government Reform Committee is accepting public
statements until Thursday, December 6 at 5 p.m. EST.
Please submit written testimony regarding your autism or vaccine injury
experiences as part of the public record. Submissions should be sent
electronically.
Also, remember to thank the Oversight and Government Reform Committee for last week's hearings. It is up to our community to keep the momentum going for future hearings.
EBCALA's Statement for the Committee:
U.S. House of Representatives Committee on Oversight and Government Reform “1 in 88 Children: A Look into the Federal Response to the Rising Rates of Autism” November 29, 2012
Statement of the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA)
Chairman Issa, Ranking Member Cummings and Members of the Committee:
Thank you for holding hearings on the federal response to the rising autism rate and for resuming the important work Rep. Dan Burton began over a decade ago. We strongly support your goal to hold the government accountable in this health emergency. We were tremendously pleased to see your bipartisan effort on November 29.
EBCALA is a citizen watchdog organization dedicated to addressing the legal needs of the autism community. We help families navigate legal challenges in healthcare, special education, insurance, the criminal justice system, and the vaccine injury compensation system. EBCALA holds annual conferences for lawyers, advocates and parents; makes referrals; and submits amicus briefs in the most important court cases related to autism. We have held Congressional and media briefings about the attached study on the association between autism and vaccines in the federal Vaccine Injury Compensation Program. Our namesake, the late Liz Birt, worked with Rep. Burton in the first hearings on autism.
Unfortunately, the federal government has lacked leadership, coordination and a sense of urgency in addressing autism for more than ten years. While you expressed alarm that the autism rate skyrocketed to 1 in 88 children born in 2000, your witnesses, Drs. Boyle and Guttmacher, described autism merely as a “national health priority” and “an important health concern.” They were unable or unwilling even to describe autism as the epidemic it is. EBCALA has publicly expressed its discontent with the Inter-Agency Autism Coordinating Committee, the supposed driver of the federal government’s response. IACC’s Chairman, Dr. Tom Insel, notably failed even to show up for your hearing. Without a national strategic plan, a sense of urgency, or a commitment to real change from the status quo, IACC is a non-starter in this crisis.
At the hearing, you did not have the opportunity to delve into the Congressionally created Vaccine Injury Compensation Program (VICP). We strongly agree with Rep. Burton that future hearings should include oversight over it. In a recent article published in the Pace Environmental Law Review, EBCALA board members found that the VICP has been compensating cases of vaccine-induced brain injury associated with autism since 1989. In 17 published decisions, VICP Special Masters described autism as a possible consequence of vaccine injury. Among published and unpublished cases, the authors found 83 cases of autism associated with compensated claims of vaccine injury; there are likely many more.
In a future hearing, you could find out what officials from Health and Human Services (HHS), the Department of Justice (DOJ) and the VICP knew about the vaccine-autism link and when they knew it. As you are aware, the VICP recently dismissed more than 5,000 claims of vaccine-induced autism in the Omnibus Autism Proceeding. We believe that a hearing on the VICP might reveal the central roles that HHS and DOJ have played.
We look especially to you in Congress to help. The judiciary has little role to play because the VICP has jurisdiction over almost all vaccine injury cases. Executive branch officials are unwilling to acknowledge that there is a crisis let alone to try to help. HHS Secretary Sebelius has even asked the media not to cover those who question a possible link between vaccines and autism. At a future hearing, please invite Secretary Sebelius to explain why the White House thinks censoring the autism vaccine controversy improves public confidence in the vaccine program. Without legislative prodding, there is almost no hope for accountability.
On November 29, however, you gave us hope. You let us believe that maybe, just maybe, we may learn the truth in our lifetimes about what has caused the autism explosion. Revealing the truth is the necessary first step in solving the problem.
We saw you work across the aisle. We saw you try to get straight answers, and we saw you exhibit the impatience we feel with complacent federal officials. We are profoundly grateful for what you have done already. But we urge you to continue what you have so auspiciously started.
EBCALA is available 24/7 to assist you in any way we can.
Sincerely yours,
Mary Holland Chair,
EBCALA Board of Directors
Curiously, during oral testimony prior to the question and answer period, the only person that even mentioned vaccines was Bob Wright of Autism Speaks (who merely stated that his daughter believed that vaccines led to her son's autism). NO ONE else even used the words vaccines or thimerosal in their oral testimony. From this standpoint, the hearing was an abysmal failure.
Posted by: Mercury Dad | December 13, 2012 at 11:24 AM
Sent in my testimony (below) to congress last night:
December 6, 2012
To Congressman Darrell Issa and Members of Congress:
Subject: Submitting comments for the record for Oversight and Reform Committee Hearings on Autism held on Thursday November 29, 2012
I am writing to ask members of congress to please continue to hold hearings on the autism crisis in the US. Last April, the CDC reported that 1 in 88 American children and 1 in 54 American boys has autism. Autism has skyrocketed since the 1980's and the increase is not due to so called "better diagnosis". Experts including Dr. Geri Dawson of Autism Speaks call autism a national health crisis. Dr. James Perrin head of the AAP called autism an "epidemic". Dr. Martha Herbert, a neurologist and autism researcher from Harvard University has called the autism increase "a catastrophe".
We need members of congress to stay engaged on autism as it is an issue that effects every level of our society- families, schools, communities, police, local, state and federal governments. Autism even effects our national security. The costs associated with providing lifetime services for one child with autism is estimated to be $2-3 million per child. Autism is the fastest growing pediatric condition in the US greater that pediatric aids, cancer and diabetes combined yet it receives a fraction of the funding.
We need more money allocated to research and treatment as well money for drug development. As Bob Wright of Autism Speaks said we need a strategic plan to combat autism.
We need intense scrutiny of the overloaded CDC vaccination schedule, a schedule that has never been safety tested. Where are the studies that show giving multiple vaccines at once to an infant is safe? There have been too many stories from parents who said their child regressed after receiving multiple vaccines-- this needs to be investigated more. Where is the science on the safety of the CDC immunization schedule?
We ask congress to continue to investigate the CDC and the close relationship between the CDC and the pharmaceutical industry. Some former CDC officials now work for the pharmaceutical industry. We ask congress to closely examine past and present conflicts of interest among members of the CDC's Advisory Committee on Immunization Practices (ACIP) and have ACIP members come to a Congressional hearing and provide answers at to why they recommend that our children recieve all these vaccines. For whose benefit are all these shots? Again, where is the science?
We also need further investigation into the Poul Thorsen scandal and hear testimony from those officials at the CDC who hired Thorsen or are otherwise connected to Poul Thorsen. We need answers to the extent of Thorsen involvement in vaccine research.
Please include these comments as part of the congressional record on the Oversight and Reform Committee hearings on Autism.
Thank you,
Posted by: Sarah | December 07, 2012 at 08:01 AM
".... and please set up the next meeting to have Brian Hooker as a key speaker. And don't let anyone cancel him this time.... PLEASE!!!"
Posted by: ASDFatherInPA | December 06, 2012 at 04:26 PM
I called every Florida Participants office and personally thanked them.
Posted by: Laura | December 05, 2012 at 11:16 AM
Great letter Mary .. hopefully EBCALA will be invited by Chairman Issa to participate in the critical process of formulating questions for the Committee to ask of high level public health officials at future hearings.
I wholeheartedly agree that a complete re-evaluation of the VICP's failure to fulfill its' original intent .. which was to provide parents of vaccine injured children justified compensation absent lenghty delays and exhorbitant financial legal fees .. has been too long delayed.
Whether true or not .. the role of the VICP is now widely perceived by a distrustful public as sole protector of the huge compensation fund .. rather than dispensing justified compensation to the vaccine injured.
I would also suggest a complete re-evaluation of the Vaccine Adverse Event Reporting System (VAERS) .. which is also widely preceived to be a dismal failure in monitoring and evaluating adverse events .. having publicly admitted that "under-reporting of adverse events" remains an ongoing problem .. with the real possibility that less than 10% of adverse events are being reported.
Since VAERS is the ONLY federal bureaucracy that monitors and evaluates adverse vaccine events .. VAERS must become PRO-ACTIVE .. with mandatory reports replacing present passive policies the require voluntary compliance of vested interests .. the very same people who recommend, approve and administer vaccines.
Posted by: Bob Moffitt | December 05, 2012 at 08:37 AM
While you expressed alarm that the autism rate skyrocketed to 1 in 88 children born in 2000
-----------------
La de da. La de da. (that was twelve years ago)
Posted by: Media Scholar | December 05, 2012 at 01:40 AM
Excellent letter!!
Posted by: Twyla | December 04, 2012 at 11:37 PM
Mary thank you so much for taking this to the next level. Please keep us posted on any continued correspondence. Of course we want accountability, restitution, at the very least these leaders fired from their positions. Thanks again, Mary, you rock!!!
Candyce Estave
Santa Maria, Ca.
Mom of Eddie-9, Vaccine injured w/ a dx of autism and Lily-7
Posted by: Candyce Estave | December 04, 2012 at 10:30 PM
Regardless if we can get any admission on the direct cause of autism can we ask for a huge funding effort for research into safe chelation and toxin reduction??. Arsenic in rice, mercury in tuna and coal emissions, lead in paint are all things pharma is not spending millions to defend and that even the most bought media admits could be harmful (duh!) . If we can push for research into safe and insurance-covered chelation and other detoxifying treatments --- we at least have hope of reversing many autism cases even if the vaccine autism link continues to be denied. It's not the best outcome and it is tragic and wrong that vac induced autism keeps occuring but at least we would not have this double whammy of an injury with no established way to treat it.
Posted by: Carolyn kylesmom | December 04, 2012 at 08:36 PM
Excellent, excellent letter, Mary! Thank you for so eloquently stating the situation. Please let us know if you receive a response. You are wonderful and amazing :)
Posted by: Laura Hayes | December 04, 2012 at 07:55 PM
Thank you for this information.
Many of the questions at the hearing last week were the same ones discussed in Simpsonwood GA, in 2000. The "problem/truth" will just "not go away..."
Posted by: cmo | December 04, 2012 at 07:32 PM