REMARKS BY:
|
TOMMY G. THOMPSON, SECRETARY OF HEALTH AND HUMAN SERVICES
|
PLACE:
|
The Subcommittee on Wellness and Human Rights
Committee on Government Reform
United States House of Representatives
|
DATE:
|
May 6, 2004
|
Autism Spectrum Disorders: An Update of Agency Initiatives and Revoluntionary New Treatment of Neurodevelopmental Diseases
The Department of Health and Human Services (HHS) is pleased to submit a statement
for the record with respect to the Autism Summit Conference of November
2003 and progress made by the National Institutes of Health (NIH) and
other member organizations of the Interagency Autism Coordinating Committee
(IACC) since that meeting. Section 104 of the Children’s Health
Act of 2000, Public Law 106-310, authorized the establishment of an interagency
autism coordinating committee to coordinate research and other efforts
with regard to autism within the HHS. Secretary Tommy Thompson delegated
the authority to establish the IACC to the NIH in April 2001. The National
Institute of Mental Health (NIMH) at the NIH was designated the lead for
this activity.
HHS agencies represented include the following: the NIH Autism Coordinating
Committee (ACC) members [NIMH, the National Institute of Child Health
and Human Development (NICHD), the National Institute on Deafness and
Other Communication Disorders (NIDCD), the National Institute of Environmental
Health Sciences (NIEHS), and the National Institute of Neurological Disorders
and Stroke (NINDS)], the Health Resources and Services Administration
(HRSA), the Centers for Disease Control and Prevention (CDC), the Agency
for Toxic Substances and Disease Registry (ATSDR), the Substance Abuse
and Mental Health Services Administration (SAMHSA), the Administration
for Children and Families (ACF), the Food and Drug Administration (FDA),
the Centers for Medicare and Medicaid Services (CMS), and the Agency for
Healthcare Research and Quality (AHRQ), as well as the Department of Education
(ED) (specifically, the Office of Special Education and Rehabilitative
Services).
This statement includes information about the Autism Research Matrix,
which was presented and discussed at the Autism Summit Conference. Additional
information about the Autism Research Matrix can be obtained from two
reports recently submitted to Congress: Congressional Appropriations Committee
Report on the State of Autism Research (found at: http://www.nimh.nih.gov/autismiacc/CongApprCommRep.pdf);
and the December 2003 submission of the Annual Report to Congress on Autism,
required by the Children’s Health Act of 2000 (found at: http://www.nimh.nih.gov/autismiacc/autismreport2004.pdf).
IACC Autism Research Matrix
The Conference Report on the Consolidated Appropriations Bill for FY 2003,
which included the appropriations for the Departments of Labor, Health
and Human Services and Education and related agencies, (Conference Report
No.108-10), requested that the IACC “convene a panel of outstanding
scientists to assess the field of autism research, and identify roadblocks
that may be hindering progress in understanding its causes and best treatment
options.” The final product was to be the development of a research
matrix focusing on the causes and best treatment options for autism that
includes opportunities for voluntary and private funding organizations.
In response to this request, the IACC convened a panel of science experts
in July 2003 to document both roadblocks to understanding causes and best
treatment options for autism, as well as goals and activities to overcome
these roadblocks. A list of roadblocks was created, and the autism research
matrix was designed to include goals and activities for the next 10 years.
The goals and activities generally fall within the following categories:
characterization of autism (i.e., phenotype), screening, early intervention,
school and community interventions, specific treatments, neuroscience,
and epidemiology. As requested by the conferees, the matrix will be a
living document, subject to ongoing revision. It will be periodically
revisited and revised based on achievement of some of the goals, as well
as on new knowledge and insights.
Autism Summit Conference
In order to expand on the work of the IACC, HHS and ED co-sponsored the
Autism Summit Conference on November 19 and 20, 2003, in Washington, DC.
This national conference focused on the Federal government’s role
in biomedical autism research, early screening and diagnosis, and improving
access to autism services. The summit provided a public forum to disseminate,
evaluate and integrate the latest practice and science-based autism information
among Federal, academic, and community participants.
A major goal of the summit was to develop an information exchange among
the autism community, experts in specific areas, and Federal agencies
that advance autism research and services. Another goal was to foster
partnerships among these groups. As part of the summit’s emphasis
on increasing communication and collaboration between government and the
private sector, several public/private partnerships created to enhance
research in needed areas were presented. These new partnerships included
initiatives for data and software sharing, public and private collaboration
for an awareness campaign, and joint ventures to encourage research with
populations at high-risk for autism, as well as genetic research.
The summit was segmented into three themes that represent areas most
urgently needing attention. The first theme, the integration of autism
services throughout the lifespan, included issues for those living with
autism, such as fragmented services provided by educational and other
systems. The second major theme, implementing autism screening and diagnosis,
included presentations on existing screening instruments and implementation
of screening practices in the community. Relevant research and current
clinical practices were discussed. The third theme was biomedical research.
In this component, programs were discussed that built on the work of the
expert panel of scientists created by congressional request to develop
the Autism Research Matrix to identify and advance high-priority research
goals. Federal officials, researchers, and community members discussed
such topics as genetics, epidemiology, and early intervention. In addition,
the Director of NIMH presented on the overall Autism Research Matrix,
to receive public input before final approval by the IACC.
Interagency Autism Coordinating Committee Meetings
At the November 21, 2003, IACC meeting, the IACC approved the current
version of the Autism Research Matrix. The IACC intends to evaluate progress
on a yearly basis and will begin discussion of implementation at its upcoming
meeting on May 11, 2004, for which further information is found at: http://www.nimh.nih.gov/autismiacc/events.cfm.
The NIH-ACC members (NIMH, NICHD, NIDCD, NIEHS, and NINDS) are assuming
primary responsibility for implementation, such as documenting in-progress
activities and developing initiatives, including the types of private
and partnership activities referred to in the conference language requesting
the matrix and discussed at the Autism Summit. Over the past few years,
NIH has considerably expanded its autism research portfolio and enhanced
its coordination of autism research. NIH support of autism research grew
from $22 million in FY 1997 to $93 million in FY 2003, with estimated
increases to $96 million in FY 2004 and $99 million in the FY 2005 President's
Budget request. NIH supports autism research in the areas of genetics,
neurobiology, early diagnosis, services, and treatment, while the CDC
has expanded its efforts in supporting research on the epidemiology of
autism.
Specifically, CDC’s autism budget has grown significantly in the
past few years. During FYs 1995-1999, the annual appropriated amount for
CDC autism activities was less than $1 million. In FY 2000, that figure
increased to just over $1 million and for FY 2004 is estimated at about
$16 million. Special studies on the causes of autism are ongoing at six
sites through the five CDC-funded Centers for Autism and Developmental
Disabilities Research and Epidemiology, and the sites have joined forces
to design a collaborative case-control study to identify risk factors
and causes of autism. CDC’s autism surveillance efforts are also
proceeding, which will provide data needed to characterize autism spectrum
disorders, determine rates of autism, and identify trends. In addition,
CDC’s Autism Awareness Campaign has moved forward. Since November,
the Campaign has received feedback reinforcing the importance of engaging
physicians and other health care professionals early on. Recently, through
and agreement with CDC, the American Academy of Pediatrics distributed
an “Autism A.L.A.R.M.” to the Nation’s pediatricians,
encouraging them to screen children early and refer those who may have
autism for further evaluation or services. To further engage pediatricians
and other health care professionals as critical players in an effort to
help children with autism develop and reach their full potential, CDC
will be disseminating additional materials to this audience in the coming
days. These activities provide a framework for allowing investigators
to study important questions about autism.
The state of autism research has advanced substantially in the past year
with the increased infrastructure that has permitted expansion of research
into the causes and best treatment options for autism. For instance, NIH
has now funded a total of eight centers under the Studies to Advance Autism
Research and Treatment (STAART) Centers Program http://www.nimh.nih.gov/autismiacc/staartcenters.cfm.
These centers complement the 10 Collaborative Programs of Excellence in
Autism (CPEA) Centers Network, and two Children’s Environmental
Health Research Centers that focus on autism. These network activities
are in addtion to the increased numbers of individual grants being funded
to support autism research.
The NIH-ACC also is developing new initiatives and priorities intended
to implement Matrix activities and achieve Matrix goals. For example,
on April 2, 2004, the NIH-ACC reissued a program announcement to potential
grant applicants entitled, “Research on Autism and Autism Spectrum
Disorders,” which may be found at: http://grants.nih.gov/grants/guide/pa-files/PA-04-085.html.
Other major initiatives that advance Matrix goals include: expansion of
a repository at the NIMH Center for Genetic Studies, which establishes
resources for genetic studies and enhances data sharing; two NIH sponsored
workshops on confronting methodological challenges in research on interventions;
and the establishment of the National Autism Brain Bank, which creates
infrastructure for enhanced brain acquisition for neuropathological investigations
to characterize the morphological aspects of the pathophysiology of autism.
In addition to these NIH activities, other HHS agencies such as the CDC
and FDA are contributing substantially to progress on the IACC Research
Matrix. For instance, the CDC is partnering with several private organizations
to launch an Autism Awareness Campaign, entitled: “Learn the Signs/Act
Early.” CDC efforts are also allowing for substantial progress on
collecting rigorous epidemiological data, with activities such as the
Centers for Autism and Developmental Disabilities Research and Epidemiology
(CADDRE) and the Autism and Developmental Disabilities Monitoring Network
(ADDM Net).
As FDA stated in its December 2002 testimony before the Committee on
Government Reform, the FDA’s Center for Biologics Evaluation and
Research (CBER) is conducting a follow-up study of reports of autism following
vaccination to the Vaccine Adverse Event Reporting System (VAERS). As
part of the study, CBER is reviewing available medical records and surveying
parents and others who have reported autism after vaccinations. The results
of this portion of the study might be used to help improve the government’s
ability to communicate the risks and benefits of vaccination to the public.
Although this study will not be able to determine whether vaccination
causes autism, it might result in the generation of hypotheses that could
be evaluated in subsequent controlled epidemiological studies.
Implementation of the Matrix is also occurring through the IACC’s
established subcommittees on autism screening and the organization of
autism treatment services. Both subcommittees are now working to coordinate
activities among IACC members and with the relevant stakeholders in the
medical and services communities. Additional discussion regarding the
implementation of the Matrix will take place at the May 11 meeting of
the IACC.
Summary
In sum, the Department of Health and Human Services, through the IACC
as well as public-private partnerships, is expanding its efforts as a
result of the Autism Summit Conference and IACC Autism Research Matrix.
These activities will continue to be monitored and evaluated on a yearly
basis by the IACC, and reflected in changes made to the Matrix as progress
occurs.
Last Revised: May 19, 2004
|