FEAT DAILY NEWSLETTER Sacramento, California
and THE AUTISM NETWORK
http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"
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April 9, 2002 Autism Database Search
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RESEARCH/PUBLIC HEALTH
* Report to Congress on Autism (Newly Released)
* 'Children Must Die' Says UK Government MMR Man
Report to Congress on Autism (Newly Released)
Prepared by the National Institute of Mental Health
National Institutes of Health
Department of Health and Human Services
http://www.nimh.nih.gov/events/interagencyautism.cfm
Although we do not know the exact prevalence of autism, estimates range from
one in 500 to one in 1,000 in the United Slates. Autism is a complex
neurobiological disorder that generally lasts throughout a persons life.
Current statistics show that autism occurs in all racial, ethnic, and social
groups, and, recently, there have been reports of an increase in the number of
children receiving a diagnosis of autism or receiving public services for
autism. In most cases, autism impairs a persons ability to communicate and to
relate to others. It also is associated with rigid routines or repetitive
behaviors such as obsessively following schedules or arranging belongings in
very specific ways. Autistic behaviors not only make life difficult for people
with autism but also make life hard for their families, their health care
providers, their teachers, and anyone who comes in contact with them. Families
coping with this devastating illness are searching for answers about its causes,
diagnosis, prevention, and treatment. Presently, there is no effective means to
prevent the disorder, no fully effective treatment, and no cure. Early
intervention is critical for affected children to gain maximum benefit from
current therapies.
Purpose of report
Public Law 106-310, the Childrens Health Act of 2000, was signed into law on
October 17, 2000. The Act authorizes the Secretary of Health and Human Services
(HHS) to conduct activities relevant to autism and pervasive developmental
disorders in Division A, Title I. The topics of these activities are: Section
101--Expansion, intensification, and coordination of activities of the National
Institutes of Health (NIH) with respect to research on autism; Section
102--Developmental disabilities surveillance and research programs; Section
103--Information and education; Section 104--Interagency Autism Coordinating
Committee; and Section 105--Providing this report to Congress.
Section 101 authorizes the Director of NIH, acting through the Director of
the National Institute of Mental Health (NIMH), to expand autism research
activities in general and to support the specific planning and establishing of
no fewer than five Centers of Excellence in Autism Research. Each Center is to
conduct basic and clinical research. The research is to include the cause,
diagnosis, early detection, prevention, control, and treatment of autism. The
Centers, as a group, are to conduct research including developmental
neurobiology, genetics, and psychopharmacology. Support is not to exceed 5
years, although support may be extended for one or more additional periods with
appropriate peer review. Section 101 also authorizes a program to collect and
share genetic materials and tissue samples and to provide a means through which
the public may obtain information and provide comments to the Director of NIH.
Section 102 authorizes the Secretary of HHS to act through the Director of
the Centers for Disease Control and Prevention (CDC) in certain autism research
areas. This portion of the Act authorizes a surveillance program on autism and
pervasive developmental disorders, as well as three regional Centers of
Excellence in epidemiology of autism and pervasive developmental disorders. The
section also calls for establishing a clearinghouse for data.
Section 103 authorizes the Secretary to establish and implement a program of
education and information for health professionals and the general public as
well as a stipend program for health professionals.
Section 104 stipulates that the Secretary is to establish a committee to be
known as the Autism Coordinating Committee to coordinate all efforts within
IIIIS concerning autism. The Committee is to be composed of the Directors of the
relevant NIH Institutes, the CDC, and other agencies and officials that the
Secretary determines to be appropriate. The Secretary also may appoint to the
Committee parents or legal guardians of individuals with autism or other
pervasive developmental disorders and representatives of other governmental
agencies that serve children with autism, such as the Department of Education.
Section 105 requires the Secretary of HHS to submit an annual report to
Congress concerning the implementation of this title and the amendments made by
this title. The present report is the second annual report to Congress and
reflects HHS activities in 2001. The report is organized into sections pertinent
to Division A, Title I of the Act.
Section 101--Expansion, intensification, and coordination of activities of
the National Institutes of Health (NIH) with respect to research on autism
a. Expansion, Intensification and Coordination of NIH Activities
Within NIH, five Institutes are members of the NIH Autism Coordinating
Committee (NIH/ACC). These are the NIMH, the National Institute of Child Health
and Human Development (NICHD), the National Institute of Neurological Disorders
and Stroke (NINDS), the National Institute on Deafness and Other Communication
Disorders (NIDCD), and the National Institute of Environmental Health Sciences (NIEHS).
In addition, a staff representative from the National Institute of Allergy and
Infectious Diseases participates in NIH/ACC meetings.
The NIH/ACC functions in a coordinating role for autism research activities
funded and conducted by the various NIH Institutes. Representatives from the
NIWACC will attend the Interagency Autism Coordinating Committee (IACC) meetings
and conduct liaison activities between the two committees to ensure that IACC
concerns and issues are addressed by NIH program staff. Oversight for the NIH/ACC
activities is primarily provided by the NIMH Director, with the NICHD Director
as co- chair. Because NIMH has been designated the lead for creating the IACC,
the NIHM Director also serves as chairperson on the IACC.
Over the past few years, NIH has expanded considerably and enhanced its
coordination of autism research. The amount of NIH support of autism research
grew from $22 million in FY 1997 to $56 million in FY 2001. Thus, the Institute
members of the NIH/ACC have made clear their commitment to the broad
intensification of autism research efforts called for in the Act. This $56
million effort encompasses a large number of grants, contracts, and intramural
research programs distributed across the MH.
In FY 2001, MH autism research activities included the following:
Grants on Treatment of Autism
As part of a special funding initiative, NIH awarded seven grants in
September 2001 to support the development and/or refinement of treatments for
core and secondary symptoms of autism. The grants were funded through the NIH/ACC,
with four Institutes contributing funds to this effort: NIMH, NICHD, NINDS, and
NIDCD. The grants are for 3 years each, totaling $2.9 million dollars over 3
years. These grants were solicited by a Request for Applications (RFA) on
Innovative Treatments in Autism that NIH issued in 2000 and was part of an
initiative that grew from a meeting on autism treatment methods held by the NIH/ACC
in 1999. The grants address psychosocial treatments for teaching speech,
imitation, and joint attention skills; psychopharmacology for behavioral
problems, emotional dysregulation, and cognitive deficits; and testing of an
animal model of self-injurious behavior. Awards were made to seven institutions
across the country: University of Pittsburgh, Pittsburgh, PA; Mount Sinai School
of Medicine, New York City, NY; University of California, Los Angeles, CA;
University of Colorado Health Sciences Center, Colorado Springs, CO; Vanderbilt
University, Nashville, TN; Childrens Hospital Medical Center, Cincinnati; and
Rutgers Slate University, New Brunswick, NJ.
The NICHD/NIDCD Network on the Neurobiology and Genetics of Autism
The NICHD/NIDCD Network on the Neurobiology and Genetics of Autism consists
of 10 Collaborative Programs of Excellence in Autism (CPEA) that link together
more than 75 researchers in 26 universities and more than 2500 families of
people with autism. This Network requires each CPEA both to conduct a cohesive,
site- specific, multidisciplinary research program on the causes, brain
structure and function, and clinical development in autism disorders and to
participate in some trans-Network collaborative studies that no one project has
the needed expertise and/or subject population to investigate individually. The
CPEA Network is in turn linked to a six-nation European autism consortium. The
CPEA Network is now studying the worlds largest group of well- diagnosed people
with autism for whom both genotype and extensive phenotype data will be
available.
In addition, because of their combined clinical and scientific resources, the
CPEAs address urgent public health questions when appropriate, including the
study of the neuropeptide secretin for treatment of autism and the study of
regression or late onset autism. The major CPEA sites are located at Albert
Einstein Medical School in New York, NY; Boston University, Boston, MA;
University of California, Irvine, CA; University of California, Los Angeles, CA;
University of Colorado Health Sciences Center, Colorado Springs, CO; University
of Washington, Seattle, WA; University of Pittsburgh, Pittsburgh, PA; University
of Rochester, Rochester, NY; University of Utah, Salt Lake City, UT; and Yale
University, New Haven, CT. NIH has solicited applications from these sites for
competitive review to be considered for an additional 5 years of funding. In
addition, NIH will establish a data-coordinating center, designed specifically
to expedite and maximize analysis of the data generated by the CPEA research
projects. The NICHD and NIDCD plan to allocate $60 million in that time period
to sustain and enhance the CPEAs.
The NICHD/CDC Study on the Relationship between Autism and Vaccines
The NICHD and CDC are co- sponsoring a study of the possible association of
symptoms of regressive autism with measles, mumps, and rubella (MMR)
vaccinations. Regressive autism involves a relatively rapid onset of loss of a
childs skills, typically involving loss of speech or words, but can include
changes in social behavior or the onset of repetitive behaviors that can
interfere with development. Regressive autism usually occurs during the second
year of life. Among children diagnosed with autism, it is estimated that between
20-39 percent experienced regressive autism. The remainder of these children
experience a more gradual development of symptoms related to autism. The MMR
study, which began in September 2000, is examining the medical and developmental
records of 1,200 well-diagnosed cases of autism (including regressive and
non-regressive) and a large number of healthy controls to assess whether there
is a temporal relation between receipt of the MMR vaccine (and possibly other
vaccines) and the onset of symptoms in early onset autism and regressive autism.
The next phase of the study will use laboratory tests to assess the levels of
measles antibody titers and to search for evidence of persistent measles
infection in blood that could be attributed to the MMR vaccine in early onset
and regressive autism cases and matched controls. Data have been collected on
regressive vs. nonregressive autism at several CPEA sites. Those data are being
consolidated for analysis; they are necessary to establish that the regressive
autism group differs from nonregressive autism and to facilitate more precise
comparisons to normal controls. Preliminary results were presented at the
International Meeting For Autism Research in November 2001.
Childrens Centers for Environmental Health and Disease Prevention
NIEHS and the Environmental Protection Agency (EPA) have funded two new
Childrens Centers for Environmental Health and Disease Prevention that will
focus research on potential environmental factors that may be related to autism.
The centers will each be funded at $5 million, or approximmately $1 million per
year for 5 years beginning in August 2001. The new Childrens Center at the
University of California at Davis (UC Davis) will investigate how environmental
risk factors may contribute to childhood autism. There has been speculation
among both parents and health professionals that prenatal or early postnatal
exposure to various meials or chemicals or even vaccines may trigger autism. To
help address this concern, the Centers research will include a large
case-control epidemiological study of various exposures and the development of
autism. This Center will also conduct research to develop new animal models for
studying social interaction and the impact of neurotoxicants on social behavior.
Additional studies will focus on elucidating the cellular and molecular
mechanisms by which specific neurotoxicants can perturb critical neuronal
functions during development. The team of investigators will include scientists
from the NIEHS Environmental Health Sciences Center at UC Davis and the NIEHS
Superfund Basic Research program, also at UC Davis. The work will be carried out
within the infrastructure of the UC Davis M.I.N.D. (Medical Investigation of
Neurodevelopmental Disorders) Institute, which has a strong relationship with
the autism advocacy community.
The newly funded Childrens Center at the Robert Wood Johnson Medical School
of the University of Medicine and Dentistry of New Jersey will seek to determine
the possible influence of mercury, lead, and valproic acid (a drug commonly used
to control seizures) on autism, learning disabilities, and regression. Studies
to be conducted will look at critical windows for brain development in the
forebrain and hindbrain and will attempt to link exposures or disturbances at
these times to subsequent behavior. Researchers also will look for differences
in genetic susceptibility of children to environmental toxicants. Researchers
will use brain imaging to determine whether children with higher exposures to
environmental toxicants have different patterns of brain growth and development.
NIH/ACC Annual Scientific Meeting
Each year, the NIH/ACC organizes a conference to focus attention on a
selected topic in autism. NICHD and NIEHS sponsored this years conference, held
September 6-7, 2001, in Bethesda, MD, with NIHM, NINDS and NIDCD as cosponsors.
The overall objective was to discuss possible cellular and molecular mechanisms
for autism and related disorders, as well as new animal models and methodologies
to study autism. The meeting included a special session on potential
environmental factors that may be relevant to autism. Over 140 individuals
attended the meeting, including scientists from the United States and abroad who
study autism and related disorders and representatives from many of the major
autism advocacy groups. NIH is preparing a meeting report that summarizes the
findings presented and that identifies needs and opportunities for future
research. The final report will be available on the NICHD Web site.
Identification of Biomarkers
Better understanding of the etiology and path physiology of autism is
essential to the development of strategies for prevention and treatment. The
identification of biological markers, functional and behavioral measures, and
neuroanatomical correlates for the disorder would enable progress toward this
understanding. In March 2001, the NINDS assembled a small group of extramural
and NINDS intramural researchers with expertise in autism or brain growth
factors and brain anatomy for an exploratory discussion of current understanding
in these areas. The Institute is considering the information from this meeting
to chart future research directions.
In addition, NINDS intramural researchers are working hard to study the
biology of autism, using neonatal bloodspot specimens for microassays and
several new techniques for their analysis; to study biomarkers in conjunction
with longitudinal studies of volumetric MRI brain imaging; and to pursue
questions about immune function in autism.
Program Announcement on Research on Autism and Autism Spectrum Disorders
NIH issued a program announcement on Research on Autism and Autism Spectrum
Disorders (see
http://grants.nih.gov/grants/guide/pa-fi1es/PA-01-051.html)
in February 2001. This is a standing announcement from the NIH/ACC Institutes to
encourage grant applications for the support of research designed to elucidate
the diagnosis, epidemiology, etiology, genetics, treatment, and optimal means of
service delivery in relation to Autistic Disorder
(autism) and autism spectrum disorders (Retts Disorder, Childhood
Disintegrative Disorder, Aspergers Disorder, Pervasive Developmental
Disorder-Not Otherwise Specified, or Atypical Autism).
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b. Centers of Excellence
The Childrens Health Act of 2000 calls for NIH to establish at least five
Centers of Excellence in Autism Research. NIH took several steps in 2001 to
begin implementing a centers program that will meet all of the specifications of
the Act regarding the organization, scientific goals, and other activities of
these centers.
To help interested groups of investigators prepare to submit high- quality
applications to become autism centers, the NIH issued an RFA on Developmental
Grants for Autism Centers of Excellence (see http:llgrants.nih.gov/grants/guide/rfa-files/RFA-MH-01-013.html).
The RFA is jointly sponsored by the NIMH, NICHD, NINDS, NIDCD and NIEHS. This
RFA, issued in April 2001, was designed to provide developmental grants to teams
of investigators to enhance their ability to plan, organize, and demonstrate the
feasibility of their autism research efforts as they prepared applications for
comprehensive center support over the following year. The deadline for
developmental grant applications submitted in response to this RFA was July 12,
2001.
Each award under this RFA was for 1 year and a maximum of $100,000 for direct
costs ($125,000 if multiple institutions were involved; thus, the total
cost--direct costs and facilities and administration costs- - of each grant
would range from about $150,000 to $175,000). NIH anticipates that the
developmental grants RFA will be a one-time solicitation. These developmental
grants are intended for investigators who will apply for centers support by an
August 2002 deadline to become part of the centers program; NIH anticipates
funding of successful applications in FY 2003. Under the developmental grant RFA,
six grants were awarded by the targeted funding date of October 1, 2001. NIH
made these awards to teams of investigators engaged in promising autism research
at the University of California, Davis, M.I.N.D. Institute; Emory University,
Atlanta; the University of Florida, Gainesville; the University of Utah, Salt
Lake City; the University of Missouri, Columbia; and Washington University, St.
Louis.
NIH also implemented a parallel funding initiative intended for applicants
who wished to apply for center support on an earlier timeline, without
participating in the developmental grant process. To this end, NIH released, in
mid-June 2001, an RFA (see
http://grants.nih.gov/grants/guide/rfa-files/RFA-MH-02-001.html)
that formally solicited proposals for comprehensive centers of excellence in
autism research, with a deadline for applications of November 29, 2001. The
comprehensive centers required by the Childrens Health Act will be called
STAART (Studies to Advance Autism Research and Treatment) Centers. NIH
anticipates beginning funding of successful STAART applications in June 2002,
with contributions from the NIHM, NICHD, NINDS, NIDCD and NIEHS. In addition,
researchers who unsuccessfully applied for developmental grants (the July 12,
2001, deadline) or comprehensive center grants (the November 29, 2001, deadline)
may submit a revised application for STAART center support by the August 2002
deadline. New applicants also may apply for STAART center support. NIH will
issue a new RFA to solicit applications for the second receipt date. Thus,
applicants can compete for STAART support in one of three ways:
(1) applying for a developmental grant in July 2001, with the intention of
then applying for a comprehensive center grant in August 2002; (2) applying for
a comprehensive center grant in November 2001, with the option to re-apply in
August 2002 if unsuccessful; or (3) applying for a comprehensive center grant in
August 2002.
NIH estimates that the total funds (direct costs and facilities and
administration costs) available to support all the awards made under these and
subsequent RFAs for the STAART Centers Program will be $12 million per year. NIH
will use this amount to fund the complement of at least five centers, a data
coordination center, and collaborative projects among the centers. Whether there
are subsequent rounds of competition will depend on the number of centers funded
in these first two rounds. The ultimate number of centers funded will be at
least five and will depend upon the merit of the applications received and the
funds available. NIH will distribute the majority of the $12 million pool of
funds to successful center applicants to support the activities specific to each
center. NIH will distribute a separate portion of the funds for specific
cooperative projects among the centers and another portion of the pool for a
data coordination center (for which there will be a separate RFA in the future).
The Steering Committee of the STAART Centers Program will determine the exact
nature of the cooperative studies.
c. Facilitation of Research
NIH has undertaken several activities to increase the quality and
availability of genetic and tissue resources to the autism research community.
The NIMH Genetics Repository has expanded its activities in the domain of
collecting blood samples, creating cell lines, and distributing genetic
materials to be used in autism research. This is a national resource that
collects, stores, and distributes such materials very broadly across the
scientific community. NIMH has also worked with the genetics data bank supported
by Cure Autism Now, which resulted in a grant application that received high
marks in peer review and can now be funded. This grant, to be funded by multiple
NIH Institutes, will support the continued activities of the genetic data bank,
a resource that distributes genetic materials broadly to the autism research
community. Also, NIH structured the RFA for the STAART Centers Program so that
these centers, when funded, will become a national resource for genetics
studies, greatly expanding available resources. The CPEA program also will
continue its ongoing, extensive activities in the collection of genetic data
within its research network. The NINDS continues to support promising research
in the genetics of autism, including core support for the development and
expansion of genetics resources.
In the area of tissue resources, NIH Institutes have continued and expanded
their support of existing tissue collection and distribution resources at
several sites. Postmortem brain tissue offers a unique, high-resolution window
into the inner workings of brain cells. Only with access to brain tissue can
researchers uncover the underlying neuropathology of autism. NIH currently
supports ongoing efforts at four tissue banks around the country (Harvard, UCLA,
the University of Maryland and the University of Miami) to collect and make this
vital resource available to researchers. Recently, NICHD awarded special
supplements to target acquisition of necessary biologic materials from
individuals with autism for focused study. In addition, NIMH has just issued an
RFA to enhance activities in this arena for several disorders, including autism.
NIH also anticipates that the STAART Centers Program will provide enhanced
resources for tissue-based research in autism.
d. Public Input
NIH is committed to bringing public views to its activities, programs, and
decision-making; to conveying information about NIH processes and progress to a
broad public; and to seeking comment about its operations and help evaluating
its performance. NIH offers many opportunities for public participation,
including the NIH Directors Council of Public Representatives (COPR) meetings,
the individual Institute council meetings, and specially conducted public forums
around the country. In addition, some Institutes, such as the NIMH, solicit
public participant reviewers on Scientific Review Groups for treatment and
services research grant applications. The NIMH also widely disseminated an
invitation with nomination procedures to patients, consumers, family members,
service providers, policymakers, and educators regarding serving as public
participants. NIMH staff reviewed the nominations and chose public participants
after a rigorous review process. Members of the autism advocacy community are
among the public participants currently serving and offering unique perspectives
on NIMH scientific review committees.
Each Institute and Center and the Office of the NIH Director have set up
Public Liaison Offices. They reach out to constituency groups and serve as
contact points for the public, especially with regard to policy matters. The
Office of Public Liaison is also the central point within an Institute to which
Members of Congress can refer their constituents. For the last two years, the
NIH Public Liaison Officers have held a special meeting with members of the
autism advocacy community to exchange information.
As a result of the first meeting, NINDS developed a listserv (maintained by
NIMH) of the e-mail addresses of advocacy group members, which continues to
update those who register with news of interest to the autism community. Also,
the National Library of Medicines Medline Plus Web site for autism became a
significant topic of discussion and increased effort in response to the autism
parents meeting last year (
http://medlineplus.nlm.nih.gov/medlineplus/autism.html).
This is a searchable site with numerous links. It provides the latest news,
research (with the ability to do a Medline search of the relevant scientific
literature), names of autism advocacy organizations, information on
rehabilitation and treatment news on specific conditions such as Aspergers,
information on related issues such as vaccines (with a link to the CDC), and
links to the specific NIH/ACC Institutes:
http://www.ninih.nih.gov/publicat/autistm.cfm
http://www.nichd.nih.gov/autism/
http://www.ninds.nih.gov/health and
medical/disorders/autismshortdoc.htm
http://www.nidcd.nih.gov/health/pubs
vsl/autism.htm
On March 30, 2001, the NIH/ACC held a meeting with representatives of autism
research advocacy groups. NIH has held such a meeting each year since 1998. The
2001 meeting was well attended, with the majority of the major national groups
represented. The Directors of four NIH/ACC member Institutes were present, as
were a number of program staff from these and other Institutes, agencies, and
the Department of Education. The group frankly discussed many issues, most of
them having to do with aspects of the Childrens Health Act. For example, the
group extensively discussed the strategy for implementing the Centers of
Excellence program, plans for the CPEA program, and the Interagency Autism
Coordinating Committee (IACC).
Section 102--Developmental disabilities surveillance and research programs
a. National Autism and Pervasive Developmental Disabilities Surveillance
Program
In 1998, CDC initiated one of the few programs in the world that conducts
active, ongoing monitoring of the prevalence of autism spectrum disorders (ASD)
in children in Atlanta, Georgia. CDC currently is analyzing data from the first
year of monitoring, which will provide one of the most complete and
comprehensive assessments of ASD prevalence in a large U.S. metropolitan area.
In 2000, CDC funded six States--Arizona, New Jersey, Delaware and Maryland
(joint), South Carolina, and West Virginia--to monitor the prevalence of ASD.
These States are adapting the model developed in CDCs Atlanta monitoring
program for their local area. In the first year, the States focused on hiring
staff, developing protocols, establishing collaborations with education agencies
and clinical providers, and obtaining institutional review board and other
approvals. In September 2001, CDC provided additional funding to 4 of the States
(Arizona, New Jersey, South Carolina, and West Virginia) to continue their
surveillance projects (Maryland/Delaware received funding through the Centers
mechanism- - see below). Data collection in these States is expected to begin in
2002. The established surveillance programs, whether as a State Autism
Surveillance Project or as part of a Center of Excellence, will collaborate in
their surveillance efforts under the newly established Alliance for Research in
Child Health and Epidemiology (ARCIIE) network. b. Centers of Excellence in
Autism and Pervasive Developmental Disabilities Epidemiology
In September 2001, CDC funded four Centers of Excellence in Autism and
Pervasive Developmental Disabilities Epidemiology to conduct collaborative
studies on the number, incidence, and causes of autism and related developmental
disabilities. The four Centers are the following: (1) Johns Hopkins University,
which will identify cases of autism in northeastern Maryland and the entire
state of Delaware; (2) the University of Pennsylvania, which will cover the
Philadelphia metropolitan area; (3) the Colorado Department of Public Health,
which will concentrate on identifying cases in the Denver area; and (4) the
California Department of Health Services, which will ascertain cases of autism
statewide, with more intensive monitoring in the San Francisco Bay area. In
addition to conducting surveillance of autism in their areas, the Centers will
also collaborate on combined case- control studies of factors that may cause
autism and related developmental disabilities. Each Center has expertise in
diverse areas relevant to the epidemiology of autism, its causes, and possible
interventions; each will conduct specific research focusing on its areas of
particular strength, such as genetics and immunology (Johns Hopkins University),
biological markers (California), screening (Pennsylvania), and comorbidity
(Colorado). The first meeting of the Centers investigators was held November
27-29, 2001, in Atlanta, Georgia.
c. Clearinghouse
(1) "The Secretary shall establish a clearinghouse within the Centers for
Disease Control and Prevention for the collection and storage of data generated
from the monitoring programs established by this title.
As part of the Centers of Excellence in Autism and Pervasive Developmental
Disabilities Epidemiology, CDC will establish a clearinghouse on policies and
research methods that can be used to facilitate the establishment and operation
of surveillance projects and epidemiological studies of autism and related
pervasive developmental disabilities. Any materials or information developed by
the ARCIIE network (Centers and
States) that may be useful for the public or other researchers will be made
available through the clearinghouse (for example, results of epidemiological
studies; publications; research protocols, including questionnaires and other
instruments; guidelines on accessing educational and clinical records, including
privacy and confidentiality of records and databases; community outreach
strategies; and educational materials for professionals, families, schools and
the general public).
Planning for a clearinghouse function has been under way as part of the State
surveillance programs. An Education and Outreach Committee has been canvassing
the autism information resources in each State, assessing information needs, and
planning a central interactive Web site. The Centers now will also be included
in these efforts. This communication tool will provide timely access to reports
and other information among CDC staff, grantees, and the general public. It is
expected that at least a first stage of a Web site will be operational by
September 2002.
(2) The Secretary shall coordinate the Federal response to requests for
assistance from State health department officials regarding potential or alleged
autism or developmental disability clusters."
In 2001, CDC completed and reported the results of a community-based
prevalence study conducted in response to the concern of parents regarding a
possibly larger than expected number of children with ASD in Brick Township, New
Jersey. The study found 6.7 cases of ASD per 1000 children, a relatively high
rate compared with European studies, but little information on rates in the
United States exists for comparison. The State surveillance projects and Centers
surveillance activities will provide vital background data for evaluating
potential clusters of autism.
Section 103--Information and education
Section 103 is not included in this report because it calls for the Secretary
to establish and implement a program to provide information and education on
autism to health professionals and the general public, including information and
education on advances in diagnosis and treatment of autism and training and
continuing education through programs for scientists, physicians, and other
health professionals who provide care for patients with autism. The
establishment of such a program was discussed at the inaugural Interagency
Autism Coordinating Committee (IACC) meeting on November 19 at NIH, and another
agency that will be instrumental in implementing this section of this Act--the
Health Resources and Services Administration--was invited to participate in the
IACC. NIH does provide education and information to the public about research
results on diagnosis and treatment, but it is not authorized to provide
education programs specifically for physicians and public health professionals.
Section 104--Interagency Autism Coordinating Committee
a. Establishment
Section 104 mandated the establishment of an interagency autism coordinating
committee to coordinate autism research and other efforts within the Department
of Health and Human Services (DHHS). Secretary Tommy Thompson delegated the
authority to establish the JACC to the National Institutes of Health (NIH) in
April 2001. The National Institute of Mental Health (NIMH) at the NIH has been
designated the lead for this activity.
b. Membership
The Committees primary mission will be to facilitate the effective and
efficient exchange of information on autism activities among the member agencies
and to coordinate autism-related activities.
P.L. 106-310 specifies that the Secretary may appoint parents or legal
guardians of individuals with autism or other pervasive developmental disorders
to the Committee. Such appointments are necessary and vital to the conduct of
the Committee smission. In particular, public members of the IACC will bring to
DHHS the concerns and interests of members of the autism community. The JACC
will serve as a forum and help to increase public understanding of the member
agencies activities, programs, policies, and research and will bring important
matters of interest forward for discussion. The Secretary appointed four public
members.
Governmental agencies represented include the following: NIH/ACC members (NIMH,
NICHD, NIDCD, NIEHS, and NINDS), CDC, the Administration for Children and
Families [(ACF) the Administration on Developmental Disabilities], the Food and
Drug Administration (FDA), the Agency for Toxic Substances and Disease Registry
(ATSDR), and the Department of Education. The Secretary selected four public
members. A summary of the meeting is posted when available on the NIMH Web site
(see
http://www.nimh.nih.gov/events/interagencyautism.cfm).
The agenda and highlights from this inaugural meeting are attached as an
appendix to this report.
Section 105--Report to Congress
Section 105 requires the Secretary of HHS to submit an annual report to
Congress concerning the implementation of this title and the amendments made by
this title. The first annual report was submitted in July 2001. This second
annual report reflects IIIIS activities through November 2001.
Other Autism-Related Activities
The Food and Drug Administrations Center for Biologics Evaluation and
Research (CBER) participated, by invitation, in the March and July 2001 meetings
of the Institute of Medicines Immunization Safety Review Committee.
Researchers at CBER continue to characterize and develop the first
virus-induced animal model for autism as well as conduct studies on vaccine
safety and the developing nervous system. Further, CBER is conducting a
follow-up study of reports made to the Vaccine Adverse Event Reporting System
(VAERS) of cases of autism following vaccination.
_______________________________________________________
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* * *
'Children Must Die' Says UK Government MMR Man
[By Richard Sparham in the UK, Sunday Telegraph.]
http://www.telegraph.co.uk/news/main.jhtml?xml=%2Fnews%2F2002%2F04%2F07%2Fnm
mr07.xml <-- address ends here.
Parents will soon be "queuing up" for the MMR jab because unvaccinated
children "will die from measles", a senior government medical adviser has told
The Telegraph.
The scientist, a member of the 16-strong panel that advises ministers on
vaccination policy, said that a measles scare similar to the anthrax panic in
America would make people "come back to their common senses" over the vaccine,
which has been linked to bowel disorders and autism.
If not, he said, measles would become a question of "the survival of the
fittest", with children whose parents shun MMR on "crazy" safety grounds put at
risk. Parents' groups reacted to the comments with anger last night, accusing
government scientists of wanting children to die of measles to prove their point
over MMR.
In a tape-recorded conversation with The Telegraph, the scientist, a member
of the government's Joint Committee on Vaccination and Immunisation, insisted
that he would speak only if he was not quoted by name.
He accepted that immunisation levels for measles had fallen dangerously low
because of concerns over MMR but said that the solution was not to give way on
single vaccines, as suggested by government scientists in Scotland.
"It's a terrible thing to say, but it seems that someone's child has got to
die from measles before the public come back to their common senses again."
He said that, in a democracy, people have to be responsible for their
choices. "Sadly what's going to happen is that some children will get serious
measles . . . and some children will die.
"What I hope is that, when that happens, they'll be on the front page of the
newspapers and parents will suddenly rally round and say: 'Oh please immunise my
child.' "
He did not believe that a death from measles would reinforce opposition to
the triple vaccine. "No, I think they'll be queuing up for it."
Questioned about whether the public's reaction to children dying from measles
will really be to clamour for the MMR jab, the scientist said: "It's the
survival of the fittest . . . survival of the fittest now is making sure that
you get the right information and don't follow crazy things written on
websites."
The adviser added that there was no scientific evidence to link MMR to bowel
disease and autism and that the Government should therefore not countenance
giving single jabs on the NHS to raise immunity levels.
The latest evidence shows that in some parts of the country measles
immunisation levels have fallen to 65 per cent. The World Health Organisation
recommends a general immunity level of 95 per cent to prevent outbreaks.
Several measles outbreaks occurred last month in south-east London, and a
survey last week showed that increasing numbers of family doctors cannot
persuade parents to accept MMR.
Jackie Fletcher, of Jabs, a parents' group, said that the adviser's comments
were shocking. "They want a child to die of measles to prove a point. Parents
are very angry that they are being denied a choice."
_______________________________________________________
APRIL 21, 2002 - 12 Noon to 5pm
THIRD NATIONAL AUTISM AWARENESS RALLY:
"The Power of ONE! I.D.E.A."
FREE and OPEN TO THE PUBLIC
www.unlockingautism.org
_______________________________________________________
FEAT'S "Night of Caring" April 27
Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and
Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and
the Daily Newsletter and would like to show your appreciation you can by
supporting our fundraiser. Make an auction contribution or sponsorship donation.
Please call 916-843-1536 for more information. Thank you.
FEAT is a tax-exempt non-profit corporation
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