Statement on “1 in 88 Children: A Look into the Federal Response to the Rising Rates of Autism”

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

Attached: Holland, Conte, Krakow and Colin, Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, Pace Environmental Law Review, vol. 28, no. 2, 2011.