[Senate Hearing 111-1248]
[From the U.S. Government Publishing Office]
S. Hrg. 111-1248
STATE OF RESEARCH ON POTENTIAL
ENVIRONMENTAL HEALTH FACTORS WITH AUTISM AND RELATED NEURODEVELOPMENT
DISORDERS
=======================================================================
HEARING
before the
SUBCOMMITTEE ON CHILDREN'S HEALTH
of the
COMMITTEE ON
ENVIRONMENT AND PUBLIC WORKS
UNITED STATES SENATE
ONE HUNDRED ELEVENTH CONGRESS
SECOND SESSION
__________
AUGUST 3, 2010
__________
Printed for the use of the Committee on Environment and Public Works
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Available via the World Wide Web: http://www.fdsys.gov
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COMMITTEE ON ENVIRONMENT AND PUBLIC WORKS
ONE HUNDRED ELEVENTH CONGRESS
SECOND SESSION
BARBARA BOXER, California, Chairman
MAX BAUCUS, Montana JAMES M. INHOFE, Oklahoma
THOMAS R. CARPER, Delaware GEORGE V. VOINOVICH, Ohio
FRANK R. LAUTENBERG, New Jersey DAVID VITTER, Louisiana
BENJAMIN L. CARDIN, Maryland JOHN BARRASSO, Wyoming
BERNARD SANDERS, Vermont MIKE CRAPO, Idaho
AMY KLOBUCHAR, Minnesota CHRISTOPHER S. BOND, Missouri
SHELDON WHITEHOUSE, Rhode Island LAMAR ALEXANDER, Tennessee
TOM UDALL, New Mexico
JEFF MERKLEY, Oregon
KIRSTEN GILLIBRAND, New York
ARLEN SPECTER, Pennsylvania
Bettina Poirier, Staff Director
Ruth Van Mark, Minority Staff Director
----------
Subcommittee on Children's Health
AMY KLOBUCHAR, Minnesota, Chairman
TOM UDALL, New Mexico LAMAR ALEXANDER, Tennessee
JEFF MERKLEY, Oregon DAVID VITTER, Louisiana
ARLEN SPECTER, Pennsylvania JAMES M. INHOFE, Oklahoma (ex
BARBARA BOXER, California (ex officio)
officio)
C O N T E N T S
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Page
AUGUST 3, 2010
OPENING STATEMENTS
Klobuchar, Hon. Amy, U.S. Senator from the State of Minnesota.... 1
Boxer, Hon. Barbara, U.S. Senator from the State of California... 2
Udall, Hon. Tom, U.S. Senator from the State of New Mexico,
prepared statement............................................. 46
Inhofe, Hon. James M., U.S. Senator from the State of Oklahoma,
prepared statement............................................. 84
WITNESSES
Anastas, Paul, Ph.D., Assistant Administrator, Office of Research
and Development, and Science Advisor, U.S. Environmental
Protection Agency.............................................. 4
Prepared statement........................................... 7
Responses to additional questions from:
Senator Boxer............................................ 22
Senator Inhofe........................................... 24
Birnbaum, Linda, Ph.D., D.A.B.T., A.T.S., Director, National
Institute of Environmental Health Sciences, National Institutes
of Health, and Director, National Toxicology Program, U.S.
Department of Health and Human Services........................ 28
Prepared statement........................................... 31
Responses to additional questions from:
Senator Boxer............................................ 39
Senator Inhofe........................................... 43
Pessah, Isaac N., Ph.D., Director, Department of Molecular
Biosciences, College of Veterinary Medicine, and Director,
University of California Davis Children's Center for
Environmental Health and Disease Prevention.................... 56
Prepared statement........................................... 59
Responses to additional questions from Senator Boxer......... 61
Response to an additional question from Senator Inhofe....... 63
Lanphear, Bruce, M.D., MPH, Senior Scientist, Child and Family
Research Institute, and Professor, Simon Fraser University,
Vancouver, British Columbia, and Adjunct Professor, Cincinnati
Children's Hospital Medical Center............................. 64
Prepared statement........................................... 66
Responses to additional questions from Senator Boxer......... 70
Response to an additional question from Senator Inhofe....... 72
Moen, Mary....................................................... 73
Prepared statement........................................... 75
Response to an additional question from Senator Boxer........ 78
STATE OF RESEARCH ON POTENTIAL ENVIRONMENTAL HEALTH FACTORS WITH AUTISM
AND RELATED NEURODEVELOPMENT DISORDERS
----------
TUESDAY, AUGUST 3, 2010
U.S. Senate,
Committee on Environment and Public Works,
Subcommittee on Children's Health,
Washington, DC.
The Subcommittee met, pursuant to notice, at 10 a.m. in
room 406, Dirksen Senate Office Building, Hon. Amy Klobuchar
(Chair of the Subcommittee) presiding.
Present: Senators Klobuchar, Boxer, and Udall.
OPENING STATEMENT OF HON. AMY KLOBUCHAR,
U.S. SENATOR FROM THE STATE OF MINNESOTA
Senator Klobuchar. Call the hearing to order.
I want to thank all of you for being here today for this
important hearing. As a mother of a 15-year-old daughter and as
the Chair of this Subcommittee, protecting our children from
exposure to harmful substances is an issue that is extremely
important to me. I also know that it is very important to
Chairman Boxer, who has made this a cause for much of the work
that she's done for California and for the country. So I am
honored to have her here as well today.
This is why we are here, and it is to highlight the latest
scientific research on the environmental impacts on autism and
other neurodevelopmental disorders. Before we consider policy
changes, we need to understand the latest science.
Two decades ago autism and other neurodevelopment disorders
were little-known, uncommon diseases. Today they affect 1
million to 1.5 million Americans, and 1 in every 110 children
born in the U.S. will be diagnosed with autism. That means that
there will be more kids with autism than juvenile diabetes. Yet
there is still so little known about the disease, its causes,
or treatments.
I know personally many of my friends have kids with autism.
I know that they struggle not only with the treatment, but it
is always so difficult because they never really know the
cause.
Sometimes when we are here in Washington, we don't realize
that the abstract numbers that I just mentioned, those 1
million to 1.5 million Americans, 1 in every 110 children, that
those abstract numbers have very real implications in people's
lives.
I know this because I meet Minnesota families like the
Moens, who are here with us today, that deal with the
challenges of having an autistic child, and the frustrations of
not having the answers. There is no cure for autism yet, so it
is clear more research is needed. We need to look at the
various factors that could contribute to autism so that we can
find a cure and develop better services and treatments for
those living with the disease.
With the rapid growth in the incidence of autism, Congress
took action and passed the Combating Autism Act of 2006,
providing nearly $1 billion to combat neurological disorders
through screening, education, early intervention, prompt
referrals for treatment and services, and research. In last
year's Recovery Act we invested over $10 billion in NIH for new
research on mental health, including at least $60 million
devoted to autism diagnosis and treatment.
But even with this increase in research funding, we must
continue to do our part to ensure that our researchers and
medical professionals are better equipped to recognize and
diagnose autism and other neurodevelopment disorders. We also
need to increase awareness of autism. Early diagnosis and
intervention can greatly help kid with autism. And it can
reduce the cost of lifelong care by two-thirds.
While we don't have a cure, there are treatments and
therapies that can help improve the quality of life of kids
with autism. As we know, children are more susceptible to
environmental dangers than adults. Children consume more food
and water, touch more dirt, because they are closer to the
ground, and can be exposed to toxins easier than adults.
Because their immune systems are still developing, kids are
more likely to become sick when exposed to environmental risks.
Along with the EPA, the National Institute of Environmental
Health Centers for Children's Environmental Health and Disease
Prevention Research are studying how exposure to chemicals in
the environment could lead to neurodevelopment disorders in
children, including autism spectrum disease. The research that
these agencies are conducting will further our knowledge in the
potential causes of autism and other neurodevelopmental
disorders. In turn, these results will help us stem the
increasing prevalence of these diseases and eliminate potential
environmental dangers facing our kids.
Your testimony today will go a long way in helping us
better understand potential environmental factors related to
autism and what the state of the research is today. Your
stories will help us understand the urgency behind the
research.
I thank you all for joining us today, and I look forward to
hearing from all of you.
Now I will turn it over to the Chair of this Committee,
Chairman Boxer.
OPENING STATEMENT OF HON. BARBARA BOXER,
U.S. SENATOR FROM THE STATE OF CALIFORNIA
Senator Boxer. Senator Klobuchar, Madam Chair, thank you
very much.
I want to begin by saying that we were all deeply saddened
to learn of the passing of your mom, Senator. Our thoughts and
prayers are with you and your family at this time.
I want to note that Amy's mom dedicated her life to
teaching children. I know how proud she must have been when her
daughter founded the first subcommittee on this Committee
dealing with children's health. So we dedicate this hearing to
her mom.
Today's hearing will look at the latest research on
potential environmental factors that might harm the health of
our children, including the ability to learn and think and
interact with families and other people in society. The EPA and
the National Institute of Environmental Health Science fund a
variety of studies on neurodevelopmental disorders, including
autism.
I would like to extend a special welcome to Professor Isaac
Pessah from the University of California Davis' Mind Institute,
who will testify in the second panel. The Mind Institute
receives Federal agency funding to conduct research on these
very important issues.
While science is still working to identify the cause of
autism, exposure to toxic chemicals in the environment is one
crucial area of inquiry. The Children's Center at UC Davis is
conducting research on environmental health factors with
autism, including chemicals' potential impacts on brain
development on social behaviors, and immune system function.
Their research is especially important now, since some data
indicates that the occurrence of autism is growing.
The Federal Centers for Disease Control estimates that on
average 1 in 110 children in the United States has symptoms of
autism spectrum disorder, or ASD. In California, State agencies
are reporting an apparent rise in the incidence of ASD. In its
most recent report, the California Department of Developmental
Services found that from 1997 to 2007--while the total number
of people served by the department increased 56 percent--the
number of people with autism grew 321 percent.
Autism can affect entire families and have financial and
other effects throughout society. The Federal Interagency
Autism Coordinating Committee estimates that autism spectrum
disorders' cost to society is currently between $35 billion to
$90 billion annually.
Today's hearing focuses on research, but there are a number
of other ways this Committee is working to protect children and
families from toxic chemicals. For example, communities need
help dealing with the impacts of autism and other disorders
that may have connections to environmental health. When these
disorders appear in concentrations or clusters, it may be an
indication that environmental factors are playing a role in
making people sick.
I am introducing a bill this week to ensure that Federal
agencies are coordinating their efforts on disease clusters as
effectively as possible and that the resources are there to
help the people in the areas that need them. This will include
making sure communities that suspect they have a cluster of
disease can call on the Government to investigate and address
their concerns.
My bill will also require EPA to upgrade their data
tracking systems to strengthen the Federal Government's ability
to investigate disease clusters. In addition, Senator
Lautenberg's bill--the Safe Chemicals Act of 2010, introduced
earlier this year--would take an important step toward testing
and identifying chemicals that could harm our children before
them come to market, instead of having to deal with
consequences after the fact.
What we want to do is require that the chemical industry
prove that their chemicals are safe to use before they are
allowed on the market, rather than the reverse. Right now
society has to prove that the chemicals are not safe. We think
the producers should have to prove they are safe before they
get on the market.
So today's hearing--and I thank Senator Klobuchar for her
leadership on this--will help inform our efforts to protect
America's children from environmental dangers. I look forward
to hearing from the witnesses. I have about--I can stay until
about 11, and then I will read the rest of the testimony. But I
am very grateful to Senator Klobuchar for her leadership.
Senator Klobuchar. Thank you very much, and thank you for
your kind words about my mom, who devoted herself to kids. She
had 30 second graders, when she was 70 years old, in her class.
But lately, in her last few years, she was mostly watching C-
SPAN, and loved watching Senator Boxer give speeches.
[Laughter.]
Senator Klobuchar. She would always say, where were you? I
saw Senator Boxer.
[Laughter.]
Senator klobuchar. So we have two great witnesses to begin
here. Our first witness is Dr. Paul Anastas with the EPA Office
of Research and Development. Dr. Anastas is the Assistant
Administrator for the Environmental Protection Agency's Office
of Research and Development and the science advisor to the
agency.
Our second witness is Dr. Linda Birnbaum with the National
Institutes of Health. Dr. Birnbaum is the Director of the
National Institute of Environmental Health Sciences, overseeing
research relating to autism and other neurodevelopmental
disorders.
I will introduce our second panel. Senator Boxer already
mentioned one of the witnesses, as well as the Moens from
Minnesota, which is what guided me to make the decision I would
be here this morning for this hearing. Because I came all the
way in, and the work must go on.
So we will start with you, Dr. Anastas.
STATEMENT OF PAUL ANASTAS, PH.D., ASSISTANT ADMINISTRATOR,
OFFICE OF RESEARCH AND DEVELOPMENT, AND SCIENCE ADVISOR, U.S.
ENVIRONMENTAL PROTECTION AGENCY
Mr. Anastas. Thank you, Chairman Klobuchar, Chairman Boxer.
It is a pleasure to be with you here this morning.
My name is Paul Anastas, the Assistant Administrator for
the Office of Research and Development in EPA. It is a pleasure
to discuss this important issue. It is also a pleasure to be
here with my esteemed colleague from the NIEHS and the other
panelists.
This issue is tremendously important, when we talk about
the potential environmental factors related to autism and other
neurodevelopmental disorders. I am a father of two small
children. I know how essential it is that we do everything we
can to ensure the health and the safety and the well-being of
our children going forward.
Autism can be a heartbreaking neurodevelopmental disorder
that may prevent children from fully experiencing typically
social interactions essential for well-being, for individual
emotional and cognitive development. Autism spectrum disorder
is a range of complex neurodevelopmental disorders
characterized by social impairments, communication
difficulties, and restricted and repetitive pattern disorders.
Autistic disorders, sometimes called autism disorders, or
classical autism, is the most severe form of ASD. Other
conditions along the spectrum include the milder form of ASD
known as Asperger's Syndrome.
Scientists are uncertain about what causes ASD. However,
many believe it could result from a variety of factors,
including a combination of genes, environmental exposures, and
gene-environment interactions. Evidence suggests that the rates
of ASD are increasing in the United States as both of you
mentioned in your opening statements.
As you know, children are especially susceptible to the
effects of chemicals in the environment, because they eat,
drink, and breathe far more than their body weight than adults.
They absorb a greater proportion of many of the chemicals in
the environment than adults do, and due to hand-mouth behavior,
young children tend to have higher exposures to these
contaminants.
Because of its extraordinary complexity, prenatal and early
postnatal brain and nervous system development can be disrupted
by environmental exposures at much lower levels than would
affect adults. We are learning that there are critical windows
of susceptibility, both prenatally and in early childhood, in
which the effects of exposures to environmental contaminants
can be significantly more severe and can lead to permanent and
irreversible disability. For these and many other reasons EPA
is especially concerned about the potential effects of
environmental chemicals on children's health and
neurodevelopment.
Now, it has been suggested that improvements in diagnosis
may be contributing to the perceived increase in ASDs. However,
one recent publication from research supported by the EPA and
NIEHS evaluated the rise in autism incidence in California from
1990 to 2006. They found that even when factors such as early
diagnosis, changes in diagnostic criteria, and milder cases
were taken into account they did not fully explain the observed
increase. As a result, the extent to which the continued rise
represents a true increase in the occurrence of autism still
remains unclear.
Additionally, through a recent evaluation of autistic
disorder data from long-term, approximately 10-year studies,
EPA scientists found significant and surprisingly uniform
timing of increases and cumulative incidence from 1988 to 1989,
in Danish, Californian, and worldwide data sets. The challenge
is to determine what specific environmental factors may
contribute to the onset or severity of autism and other
neurodevelopmental disorders so that exposure to these can be
reduced.
At EPA we are conducting research to determine how
environmental chemicals could impact the development and
function of the human nervous system through our intramural and
extramural research programs. EPA's intramural research program
focuses on susceptibility to chemicals and the factors
underlying the susceptibility, the chemical mechanisms of
action, and the relevance of effects to human health.
There are now alternative models and methods, including
computational toxicology, which allows us to evaluate a much
larger number of substances in the same amount of time. We have
an extensive extramural research program that includes the
children's research centers that we work hand in hand with our
partners at NIEHS. And we are going to hear far more about
those today, including the research of the University of
California at Davis Center for Children's Environmental Health,
which is looking at possible genetic and environmental risk
factors that may contribute to the incidence and severity of
childhood autism, to understand and characterize common
patterns of dysfunction in this disease.
Also, we have studies in the Children's Center at the
University of Medicine and Dentistry of New Jersey and several
other centers, which we will be happy to discuss and are
detailed in our written testimony.
Thank you for the opportunity to speak to you here this
morning.
[The prepared statement of Mr. Anastas follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Klobuchar. Thank you very much.
Dr. Birnbaum.
STATEMENT OF LINDA BIRNBAUM, PH.D., D.A.B.T., A.T.S., DIRECTOR,
NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES, NATIONAL
INSTITUTES OF HEALTH, AND DIRECTOR, NATIONAL TOXICOLOGY
PROGRAM, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Ms. Birnbaum. Chairman Klobuchar, Chairman Boxer, and
Senator Udall, I am pleased to present testimony today on
research related to neurodevelopmental disorders and to
specifically discuss if environmental exposures are linked to
the development of autism spectrum disorders.
My name is Linda Birnbaum. I am the Director of the
National Institute of Environmental Health Sciences at the
National Institutes of Health and the Director of the National
Toxicology Program at the Department of Health and Human
Services.
Scientists have made considerable progress in understanding
how the brain and nervous system grow and function. It is
becoming clear that neurodevelopmental disorders, such as
autism spectrum disorders, attention deficit hyperactivity
disorder, and learning disorders are likely due to a complex
interplay of both genetics and the environment. Our research
indicates that environmental exposures, including low-dose
exposures, and lifestyle choices before a baby's birth and
during early childhood do have an effect on the developing
brain.
Autism spectrum disorders are developmental conditions that
have increased in U.S. children in the past several years.
NIEHS has significantly increased our funding this year to $9.3
million. I am also an active member of the Interagency Autism
Coordinating Committee, a group of Federal agencies, autism
advocates and parents who plan and coordinate a research
agenda.
Our two largest efforts on autism are the EARLI study and
CHARGE. In the EARLI study researchers at the Drexel
University, University of California, and Johns Hopkins
University are studying mothers who already have one child with
autism and who are pregnant again. This study is one of the
largest studies of its kind. It will follow 1,200 mothers
during their pregnancy and their new babies until the age of 3
to identify prenatal and postnatal exposures that may be linked
to autism.
The CHARGE study, which you will much more about from Dr.
Pessah, which is coordinated by the NIEHS EPA Children's
Centers at the University of California Davis, is looking at a
wide range of environmental exposures and their effects on
early neurodevelopment. This study is following more than 1,600
children in California from three groups: children with autism,
children with other developmental days, and normally developing
children.
So far, the most striking findings relate immune system
alterations in children with autism, which points to the need
for further study of the immune and nervous systems in the
etiology of autism spectrum disorder. It is also important to
note that the CHARGE study found no difference in mercury
levels between children with autism and normally developing
children.
I am happy to report that the American Recovery and
Reinvestment Act allowed NIH to increase its support for autism
research. Our funding is being used to study air pollution,
polyfluoroalkyl compounds, better known as PFCs, and PFOA is
the most common one; PFCs are the ones we think about,
endocrine disrupting chemicals, smoking, alcohol use,
medication, and infections as potential risk factors for
autism.
The work we fund on autism and ASD is an important part of
our overall investment in children's neurological development,
which totaled more than $29 million last year, almost $18
million from the regular NIEHS appropriations, plus $11.5
million in ARRA funds. Development of the nervous system begins
in the womb and extends throughout childhood.
During periods of rapid development, the brain is
vulnerable. Even small changes in the timing of critical
developmental events can have major consequences for brain
structure and function. We call these critical developmental
periods windows of susceptibility, during which different
chemicals can affect the brain in specific and damaging ways.
For example, the amount of lead that is toxic to an infant
is much less than the amount that would be toxic for an adult.
So infancy, in this case, is a window of susceptibility.
Many studies have shown that mercury is also a
developmental neurotoxicant. Studies in Bangladesh have found
that arsenic and manganese in drinking water are associated
with decreases in intelligence.
But metals are not the only toxic agents to affect IQ,
learning, and memory. A study published last year from Columbia
University showed that a mother's exposure to PAHS released
from burning fossil fuels and tobacco can adversely affect a
child's IQ. The IQ scores of children exposed in utero to high
levels of PAHS were almost five points lower than those of less
exposed children. In another report, Columbia University
examined prenatal exposure to a common flame retardant, PBDEs.
Core blood specimens were analyzed for selected flame retardant
chemicals. The same children were examined for neurodevelopment
at ages 1, 2, 3, 4, and 6. The research showed that these
children, who had higher blood concentrations of the flame
retardants, scored lower on tests of mental and physical
development.
In addition to effects on learning, these same chemicals
can also affect behavior. Early lead exposure has been
associated with aggressive behavior at different age levels,
from toddler to adolescent. Researchers at our Cincinnati
Children's Center found that childhood exposure to lead and
prenatal exposure to tobacco are risk factors for ADHD,
possibly accounting for one-third of the cases in U.S.
children.
A recent study from Mount Sinai's Children's Environmental
Health Study found that increased concentration of pthalates in
the mothers during pregnancy were associated with increased
aggression as well as conduct problems, attention problems, and
depression in the children. Pesticides are also being
investigated in relation to ADHD. Our Harvard Center just
released a report showing an association between exposure to
organophosphate pesticides and development of ADHD.
In summary, environmental influences on brain development,
behavior, and other neurological outcomes of public health
concern are a rapidly growing area of environmental health
sciences and a high priority for NIEHS. We believe that our
research will advance our understanding of these conditions,
including autism, providing new information for prevention and
treatment for children.
Thank you for the opportunity to testify. I would be happy
to answer questions.
[The prepared statement of Ms. Birnbaum follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Klobuchar. Thank you very much to both of you.
I was just trying to put myself in the shoes of like a
pregnant mom right now, or someone who has a baby that they are
afraid has autism, and they don't know what is wrong, and
trying to figure out exactly what the state of the research is.
I thought your comment at the end, Dr. Birnbaum, was something
we all believe, that chemicals do affect children's development
and their brain. That is why I worked so hard on that
children's product bill with the lead, and the Chairman and
others and Senator Udall have worked on lead paint and other
issues like that.
But I wanted to just narrow in on this autism issue. You
mentioned two things specifically, was that one of the studies
had shown no difference in the mercury levels of kids with
autism and with not. Is that right?
Ms. Birnbaum. That is correct. That is from the CHARGE
study. I think maybe Dr. Pessah will talk more about that.
Senator Klobuchar. Then the other thing you mentioned,
though, there was a difference in the immune systems. Do you
want to elaborate on that?
Ms. Birnbaum. I think I can just kind of give you the
bottom line. It appears that the immune systems of these
children may be altered. They appear that they may be showing
more symptoms, or symptoms that may develop into autoimmunity.
And again, I think Dr. Pessah will talk more about those
findings. But I think it is important to understand that
autoimmunity is another of the conditions in our country which
is rapidly increasing over the past 10 to 20 years.
Senator Klobuchar. So, could that have something to do--
could that be the key for us trying to figure out the cause
here because of the difference that has been found, or not?
Ms. Birnbaum. No, no, I think the point is that there is
growing suggestion that environmental factors may be playing a
role in the increase in autoimmunity. Part of the syndrome, if
you want to use that word, for autism spectrum disorders, may
involve alterations in the immune system.
Senator Klobuchar. OK. So what you are saying is, and I
will let you answer this, too, Dr. Anastas, is that it is
finding that there is a difference with the autoimmune systems.
We know that autoimmune system differences can be attributed to
environmental factors, and that that could lead us to believe
that the environmental factors could have something to do with
who has autism and who doesn't.
Ms. Birnbaum. I think alterations in the immune system may
be one part of the autism puzzle. I think the role of
environmental factors in the increase in autism is in large
part because you can't--our genes don't change over a
generation. Our genes take multiple generations to change. And
the rapid increase in autism, which was indicated by work that
was done at UC Davis. The CDC has done continual analyses
indicating that 1 in 70 boys is developing autism.
Senator Klobuchar. I take it that you both believe there
has actually been an increase? Some people say, oh, it is
diagnosing that they didn't do before. But you both believe
there has been an increase?
Ms. Birnbaum. Right. I think the study that, again, that is
coming out of the UC Davis group that Dr. Anastas referred to,
clearly shows that at least in California only 30 percent of
the increased incidence can be potentially due to differential
diagnosis.
Senator Klobuchar. Dr. Anastas.
Mr. Anastas. Thank you.
Yes, and I would just add that in addition to the study
that was just referred to, there is an additional study
worldwide that shows that the rise in incidence cannot be
attributed to changes in diagnosis alone.
There are a couple of very important points that have been
made that I just wanted to emphasize. This window of
susceptibility is something that can't be overemphasized. When
we talk about what the doses or the levels of mercury, for
example, might be the same, we need to recognize that that is
not the entirety of the story. When you are exposed, whether it
is in utero or in early childhood, it can be a difference in
reaction because of the level and the stage of development that
you are in.
So merely because one person may be exposed to the same
levels as another, that is not the entirety, and that is
something that is a very important area for research.
The other is we often get into this discussion about
whether it is environment or genetics. I think there is a
growing body of knowledge that it is not one or the other. As
Dr. Birnbaum just stated, our genetics can't change this
quickly in order to explain the increase in incidence. So what
we are saying is that it is an interaction of the environment
and genetic susceptibility, where certain triggers are released
because of environmental exposures.
Senator Klobuchar. Thank you.
Senator Boxer.
Senator Boxer. First of all, thank you very much, both of
you, for your clarity. I remember many years ago meeting, when
I was in local government, meeting parents who had children
with autism. And then, they were being told it was the way they
were raising their children, that there was something with the
mother-child relationship. Honestly, I saw the look on parents'
faces. They were devastated. That is where the science was.
We clearly have moved to a different place now, where we
are looking at the genes, and we are looking at the chemicals
that either the parents or the child have been exposed to. So I
think there is a very important message to parents out there:
do not give up hope. We are going to figure this thing out.
The fact that we are only spending $9 million on autism,
something that affects 1 out of 110 children, is just amazing
to me. And it goes to where our priorities are. So I wanted to
ask Director Birnbaum, again, just if you could lay out for me
how much did you get in the Economic Recovery and Reinvestment
Act to facilitate the research. And if you could slowly tell me
what that is exactly.
Ms. Birnbaum. NIH has, as you know, got $10 billion, or
$10.4 billion, including the comparative effectiveness research
dollars under the Stimulus Act. NIEHS, including our Superfund
program, got about $190 million to conduct research under the
Stimulus Act. Our funding that we have committed of our ARRA
funds was about $9 million, no, $11.5 million, excuse me,
related to neurodevelopmental disorders. About $4.9 million of
that was stimulus funding.
Senator Boxer. I am really confused. How much of the
Economic Recovery Act funds that went to NIEHS autism research?
Ms. Birnbaum. Specifically, of the $190 million, let's say,
put about $5 million of that $190 million.
Senator Boxer. Five million in addition to the $9 million?
Ms. Birnbaum. No, that is part of the $9 million. Our base
funding was, in 2009, was $4.3 million for autism.
Senator Boxer. So the base funding is about $4 million. And
you added $5 million. So you doubled the amount. So without the
ARRA funding, we go back to $4 million, $4.5 million research
on autism, is that right?
Mr. Birnbaum. I think it is hard to say exactly, because we
do see autism as a priority, and we are trying to increase our
amount of funding to look at neurodevelopmental effects.
Senator Boxer. Well, I hope you will let us know, all of us
here care a lot about this, and others who are not here who do
care. If you feel that we could do a lot more, if we had a
little more funding here. Because following Chair Klobuchar's
questions, it is clear to me that there are, we are coming
along, we are narrowing down. It may be this, some
susceptibility to certain chemicals and toxins because of
certain genes or other factors.
So I think, and that is why putting that together with our
cluster bill that we are introducing, and Senator Lautenberg's
bill on making sure the chemicals are safe before they are
introduced, I think we are kind of having a fairly clear path
here to where we are going.
That really covers my questions. Thank you.
Senator Klobuchar. Thank you very much.
Senator Udall.
Senator Udall. Thank you, Chairman Klobuchar, and thank
you, both of you, for focusing in on this issue.
I would like to put my opening statement in the record and
go directly to questions, if that is acceptable here.
Senator Klobuchar. Without objection, so ordered.
[The prepared statement of Senator Udall follows:]
Statement of Hon. Tom Udall,
U.S. Senator from the State of New Mexico
Thank you, Chairman Klobuchar, for calling this hearing
into an issue that is of great concern to families in New
Mexico and around the country.
A number of my constituents have contacted my office,
describing their families' challenges with autism and our
frustrating inability to learn more about the causes and cures
for this condition.
According to our testimony here today, our top researchers
believe that there is a significant environmental component to
autism. Genetics cannot explain the rapid rise in autism, so
they suspect chemical exposure may trigger or worsen neuro-
developmental disorders.
I hope this hearing will support those ongoing efforts, and
I think that it is important to put the unknown links between
autism and environmental toxic exposure in the bigger picture.
As I and others on this Committee have stated, Federal
toxic chemical regulation is broken and needs to be addressed.
Our Nation's laws that are supposed to regulate toxic
chemicals do not even require chemical companies to submit
health and safety studies for the chemicals that are included
in everyday household products.
The Washington Post published an article yesterday titled
``U.S. regulators lack data on health risks of most
chemicals,'' which I would like to include in the record.
The article references the recent recall of 28 million
boxes of the Nation's most popular children's cereals because a
petrochemical known as ``2-methyl naphthalene'' accidentally
ended up in cereal. The chemical is apparently used in the foil
packaging.
According to the article, ``the Food and Drug
Administration has no scientific data on its impact on human
health. The Environmental Protection Agency also lacks basic
health and safety data even though the EPA has been seeking
that information from the chemical industry for 16 years.''
We have had several hearings already this year underlining
the need to reform the Toxics Substances Control Act, and I
hope we will continue to make the case for action.
I believe that we can all agree that science should drive
decisionmaking and that we should take precautions when we
expose children to potentially toxic chemicals. The need for
testing is basic and obvious.
If we do not, our children and our grandchildren will
continue to be guinea pigs in an uncontrolled experiment
testing the impacts of thousands of industrial chemicals on the
human body.
[The referenced article follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Udall. One of the things that I would like to ask
about, and I would like to cite a few facts to set the stage,
an April article in the journal Current Opinion in Pediatrics
states that children today are surrounded by thousands of
synthetic chemicals. Two hundred of them are neurotoxic in
adult humans and a thousand more in laboratory models. Yet
fewer than 20 percent of high volume chemicals have been tested
for neurodevelopmental toxicity.
According to the EPA, there are 3,000 chemicals that are
classified as high production volume. These are chemicals that
the U.S. imports or produces at a rate of more than 1 million
pounds per year. According to the EPA, over 40 percent of these
have not been tested for basic toxicity.
And I would like to ask both of you, do you think the
suspected links between chemical exposure and autism and other
neurodevelopmental disorders show the need for chemical makers
to provide more information and health studies about their
products? And part of that, yesterday part of that question, I
don't know whether you saw the post yesterday, but on the first
page was an article that in cereal, boxes of cereal, which--
kids are eating most of the cereal, an unsettling surprise. The
Kellogg recall shows that U.S. lacks data on risks of many
chemicals. And there is a chemical in there.
And one of the things it highlighted in the story is the
chemical companies do not test, they do not test these kinds of
chemicals. Because if they test, they are required to turn it
over to the Government. So they just decide, well, we don't
want to know what is in it, so we don't want to turn it over.
Would you talk a little bit about that, and what you think
we need to do to get to the bottom of this and try to do
everything we can to protect our children?
Ms. Birnbaum. First of all, I think you know that I am not
in a regulatory agency, but in a research agency.
Senator Udall. That is right.
Ms. Birnbaum. I may have had many years at EPA, but I would
like to stick to the research.
I think the issue is that there is growing evidence, lots
of evidence that chemicals can cause effects. We have known for
years that pharmaceuticals, or the drugs--there are always
black box warnings on drugs, do not take if pregnant. And the
reason you don't take them is because they can harm the fetus
as it grows.
So we know that chemicals can impact things. Many chemicals
are not tested at all. I think many of us do believe that it
would be much better to have chemicals fully evaluated for
their safety before they go on the market. The chemical that
was of concern that was talked about in the cereal boxes
yesterday is the chemical that my NTP actually has done some
very limited testing on to test whether it was a mutagen or
not, it caused genetic damage. But that is the extent of the
testing that has been done for that.
So I think it would be very important to have the testing
done first. I think we have to really work on what we mean by
testing. Because there is a pattern that has emerged that there
are guidelines for how you do testing. And the problem is that
guidelines that were established for science in the 1970s are
really not up to what is needed in this century. We need to
focus our efforts on using all the newest information, not
necessarily things that were required 20 or 30 years ago to do
these tests.
The other point I would like to make, which is referring to
something Dr. Anastas just talked about, which was the
susceptibility and the interaction between genes and the
environment, I think it is very, very clear that depending on
your genetics, as well as maybe what your past exposures were,
can alter your susceptibility. There is a paper that I just saw
that is coming out that shows that some of the flame
retardants, whether or not you see developmental neurotoxicity,
at least in animal studies, is totally dependent on the
genetics of the mouse that you test.
So while mice are not men, they provide us a great deal of
information about what may be possible in the human population.
I think I will let Paul talk a little bit more about the
regulatory agenda.
Mr. Anastas. I will just say that prior to coming to the
Environmental Protection Agency, I taught chemistry at Yale
University. One of the things that we always taught our
students is that when you introduce a new chemical into the
world, when you make a new chemical in the lab, you need to
characterize that chemical. And there is a wide range of
analyses that are done in order to describe exactly what that
chemical is.
But yet traditionally part of that chemical
characterization has not included its impact on human health or
the environment. As long as that exists, where when we are
describing a chemical, it doesn't include its impacts on
humans, on the environment, on developing children, then we are
going to be in the same situation. We need to have a fuller
understanding. And the definition of performance when we are
talking about chemicals, and even commercial chemicals, needs
to include how it performs in terms of its role in the world,
interacting with humans and the environment.
Senator Udall. Thank you both for those answers.
I am sorry, I have to leave, and I won't be able to hear
the second panel. I have to preside over the Senate, but I am
leaving you in the hands of two very capable Senators that I
know are very concerned about this issue.
Thank you very much.
Senator Klobuchar. Thank you.
First, Dr. Birnbaum, I am just trying to figure out the
exact amount of money and trying to mesh these numbers here.
You said it to Senator Boxer, it is like $9 million on
research?
Ms. Birnbaum. Nine million on autism research in fiscal
year 2009. And approximately that in fiscal year 2010. But that
is, in our total portfolio for all our neurodevelopmental work,
is about $29 million.
Senator Klobuchar. Right. That is what I just saw in your
testimony.
Ms. Birnbaum. It is about a third of the total
neurodevelopment.
Senator Klobuchar. So there is $29 million for research for
neurodevelopmental work, and about a third of that is
specifically for autism?
Ms. Birnbaum. That is correct.
Senator Klobuchar. I am just trying to figure out, we got
from NIH the statistic that in the recovery act, we invested
over $10 billion in NIH on new research on mental health,
including at least $60 million devoted to autism diagnosis and
treatment.
Ms. Birnbaum. Under the stimulus package, NIH did have an
initiative and has funded about $60 million of stimulus funds
on autism. Much of that has to do with treatment and diagnosis.
Senator Klobuchar. So you are differentiating that from the
research of causes?
Ms. Birnbaum. Our--for example, approximately $5 million of
stimulus funding in autism is part of that $60 million that NIH
as a whole was spending. There are about four or five NIH
institutes that are very involved, for example, in the
Interagency Autism Coordinating Committee and involved in
autism research. So it is not just NIEHS.
Senator Klobuchar. That makes a difference.
The other thing I wanted to ask about was, we have had an
incident in Minnesota, and I talked with these families in the
Somalian community, we have a very large Somalian community in
Minnesota. And they have had a very high incidence of autism. I
don't know if you have heard about it, but the diagnosis is 1
out of 28 of their children have autism.
So I was just wondering how this possibly could fit in with
the research that is going on. Of course they are searching for
answers. What Senator Boxer has been talking about with
clusters, although this is, they live in a similar area, but
other kids that aren't Somalian don't have that high rate.
Dr. Birnbaum and then Dr. Anastas.
Ms. Birnbaum. There are some recent hypotheses that Vitamin
D, or the absence of Vitamin D may be associated with an
increase in autism. My understanding is that there are
essentially no reports of autism in Somalia. Again, it is a
developing country, they might not have the diagnosis.
But the phenomenal cluster, I would say, actually of Somali
children being reported with ASD in Minnesota and I think in
some other Somali communities in the northern United States,
people are at least suggesting that that might be related to
not having enough Vitamin D. So that is a hypothesis that
people are beginning to look at.
Senator Klobuchar. Dr. Anastas.
Mr. Anastas. I would just suggest that while this is
certainly an important area of research, it does lend itself to
something we discussed earlier, which is the genetic-
environment interactions rather than one or the other. This
dance, if you will, would lend itself to people with genetic
predispositions, not necessarily exhibiting a certain disorder
in the absence of being exposed to certain triggers. Yet when
they are exposed to certain triggers, they could exhibit those
disorders.
So it is an active area, or I should say, an important area
of research that in my opinion needs to be emphasized.
Senator Klobuchar. This interaction, and I suppose this
could be an example where if, in fact, and I do believe the
diagnosis in Somalia might be very limited. But if in fact they
get more autism, the kids do, in the U.S., that it could be an
interaction between some genetic component and then some kind
of triggering factor, environmental factor.
Ms. Birnbaum. This is the beauty of the EARLI study, which
is recruiting 1,200 women who already have one autistic child.
Because we know that if you have one autistic child you have a
higher likelihood that a second child might be autistic,
suggesting that there is clearly some genetic component to it.
However, it is a little bit hard to--usually if you have
one child, your environment doesn't change that much if you
have a second child. So there is also the interaction going on
here. But in the EARLI study, not only are we looking at every
kind of environmental factor that we can think of, and that
includes diet and it includes stress, but we are also looking
at the genomics of these women and their children and their
partners as well.
Senator Klobuchar. Senator Boxer.
Senator Boxer. A couple of questions. I want to home in on
the one child, two child, three child; doctors studying that.
What do we know? What are the chances, if you have had one
autistic child, of having a second?
Ms. Birnbaum. I believe you have about 10 percent chance
that your next child might be. I think that is the approximate
statistics, that about 1 in 10. So that is much higher than the
1 in 110.
Senator Boxer. Than the 1 in 110. So that leads you further
to suspect that it is something either in the genes or the
environment combined?
Ms. Birnbaum. Right. When you have a genetic input, and not
every child is impacted, then it says that there has to be
something in addition to genetics that is causing the condition
to appear.
Senator Boxer. Do we have other neurological conditions
that have been found to be caused by both genes and
environment?
Ms. Birnbaum. There is suggestion that many different
certain things like schizophrenia or bipolar disorder, for
example, an adult clearly may have an interaction. And we know
that, for example, when you look at something like lead, which
is a clear neurodevelopmental toxicant, that not every child
has the IQ loss. You have to look at a whole population of
children to see the shift.
Senator Boxer. So is the ultimate--down the road cure for
this, if this proves out, we don't know that, gene therapy?
Ms. Birnbaum. I think that the importance of understanding
environmental triggers of disease is that you can change your
environment. But at least at this point, you can't change your
genes.
Senator Boxer. But isn't one of the goals of the reason we
did all that funding for genes is to eventually do gene
therapy?
Ms. Birnbaum. That is certainly a possibility. But I think
we can get to the environmental impacts more easily and more
readily. And again, as Dr. Anastas has said several times, the
effect of a gene may only be expressed in a given environment.
Senator Boxer. Yes, sir.
Mr. Anastas. I would just like to add that this area of
epigenetics is emerging and being understood----
Senator Boxer. What do you call it?
Mr. Anastas. It is called epigenetics.
Senator Boxer. E-P-I?
Mr. Anastas. E-P-I. It is an emerging area of
investigation. I would certainly describe it as in its early
stages.
But this is showing that having certain environmental
interactions may trigger these genes to perhaps impair a gene's
ability to the expression of a certain gene. The point that I
want to make is that the early suggestions are that it wouldn't
necessarily stop with the individual, but can be translated
into future generations as well.
Now, I would never suggest that this is an established,
concluded science. I am saying that this is emerging science in
an important research area.
Senator Boxer. Let me just ask my last question. We know in
America 1 in every 110 kids is born with autism. What do we
know about other countries' data?
Ms. Birnbaum. I don't know the exact statistics in other
countries. I do know that there appears to be--the increase in
autism appears to be in many, many countries. I think one of
the issues that we keep getting is the differential diagnosis,
are we changing our criteria, are we looking in a different
way. It is clear in the U.S. that that doesn't explain the
increase.
Senator Boxer. So you would say, from what you know, there
is a worldwide increase?
Ms. Birnbaum. Certainly in many countries there appears to
be. Certainly in developed countries anyway.
Senator Boxer. I doubt that they have a lot of statistics
in Somalia just because I don't think they have a health care
system that is capable of doing what we do. But I certainly
think, given what Senator Klobuchar has discussed about that
cluster, it might be very interesting to look at at least the
gene situation, and if that is somehow making these children in
your State more vulnerable. I don't know if we have any data
from Somalia.
Ms. Birnbaum. We would certainly be eager to entertain a
grant where someone proposed to study that population; it needs
to be done, really, in a prospective fashion. And again, since
there are so many children being diagnosed with autism in that
population, you might be able to do something similar to what
we are doing in Philadelphia and California and Maryland as far
as recruiting in that population.
Senator Boxer. The reason I think it is important--I was
stunned with that number you said, 1 in 28 children.
Ms. Birnbaum. Yes.
Senator Boxer. That is a cluster. And I think we could
maybe learn quite a bit.
Anyway, I need to run off to my next obligation. I just
wanted to say how much I will look forward to hearing about the
next panel from today's Chair, and to thank everybody for being
here. We are going to be taking action on a lot of these
matters. I wanted to note when you mentioned pthalates; did you
mention pthalates?
Ms. Birnbaum. Yes, I did.
Senator Boxer. We passed some very tough legislation;
Senator Klobuchar and I serve on the Commerce Committee. We
were able to ban pthalates in children's products. It was an
enormous fight. It was an enormous, enormous, terrible, awful
fight. We got into fights about rubber duckies and how, one of
the people said, well, you know, these rubber duckies are fine.
Well, yes, but if they have pthalates, they are not.
So we managed to do it. But it is very tough to regulate
this one chemical at a time. That is why the work you do is so
very important. Because hopefully you are going to be able to
I.D. for us a class of chemicals that may be problematic or
will give us the road map we need so we don't have to just get
into these arguments one particular chemical at a time.
Thank you very much, Senator Klobuchar.
Senator Klobuchar. Thank you.
I want to thank our witnesses. It was enlightening. We know
there is a lot more work to be done. Thank you for this update;
I think it helps us to understand the funding but also the
status of the research and learn some new things, like
epigenetics.
We look forward to our next panel. Thank you very much to
both of you.
If we could have our next panel come up.
Welcome to our second panel. I see you are staying here,
Dr. Anastas. Thank you for that, and Dr. Birnbaum, so we can
hear your reaction to this later as well.
Our first witness in this second panel, as has already been
mentioned, is Dr. Isaac Pessah, who is the director of UC Davis
Children's Center for Environmental Health and Disease
Prevention. He is an expert on how environmental factors
interact to influence neurodevelopment.
Dr. Bruce Lanphear, in the middle, is the Director of the
Cincinnati Children's Environmental Health Center, and is the
principal investigator for research examining fetal and early
childhood exposures to prevalent environmental hazards.
Finally, I would like to extend a warm welcome to Mary
Moen. Mary is a fellow Minnesota mother and is here today to
share her and her family's experience of living with an
autistic son.
Is Max with you today? There you are, Max. Thank you for
being with us.
I understand, Max, that you are a real whiz with maps and
directions; is that right? Maybe you could help my husband.
Maybe I can hook you guys up.
As well as your dad, and Mary's husband, Steve. Thank you
for being here. And Mary is here with her family to help us put
a real face on the stories behind autism and other
neurodevelopment disorders. Thank you so much for coming from
Minnesota.
So we will get started with Dr. Pessah.
STATEMENT OF ISAAC N. PESSAH, PH.D., DIRECTOR, DEPARTMENT OF
MOLECULAR BIOSCIENCES, COLLEGE OF VETERINARY MEDICINE, AND
DIRECTOR, UNIVERSITY OF CALIFORNIA DAVIS CHILDREN'S CENTER FOR
ENVIRONMENTAL HEALTH AND DISEASE PREVENTION
Mr. Pessah. Senator Klobuchar, thank you for giving me the
opportunity to present testimony regarding environmental
factors in autism risk.
As you have already heard, autism spectrum disorders
encompass a wide range of what we call phenotypic severities
and co-morbidities, such as a high rate of seizure disorder and
anxiety. ASD likely encompasses several disorders with distinct
ways of getting there, or etiologies, and pathologies that
converge on a common set of behavioral criteria.
Although autism risk has strong heritability, it turns out
that no single locus alone, or genetic address, is sufficient
to account for the full clinical phenotype. Results from many
genome-wide autism screens indicate that potential
susceptibility genes are spread across the entire genome.
Recently, several very rare genetic mutations, single
nucleotide polymorphisms, de novo copy number variations and as
you have heard, epigenetic factors which influence DNA
methylation, and therefore expression of the DNA's message,
were shown to contribute to the complex transmission of autism
risk. So genetics alone cannot account for the majority of
autism cases currently being diagnosed.
There is a lack of full concordance between identical or
monozygotic twins with some estimates ranging as low as 60
percent, which leaves wide room for environmental triggers.
Interactions among multiple genes are likely to contribute to
various types of autism. Inheritable epigenetic factors and/or
non-heritable environmental exposures are likely to
significantly contribute to susceptibility and variable
expression of autism and autism-related traits. It is therefore
likely that constellations of epigenetic and environmental
factors are contributing to the increased prevalence of ASD, as
we have heard. And the rise cannot be fully accounted for by
changes in diagnostic criteria.
There is a critical need to identify environmental factors,
including exposures to foreign chemicals or anthropogenic
source and changes to the diet that contribute to autism risk
and severity. The vast majority of public and private resources
has and continues to support work on identifying genetic
impairments associated with autism risk. From these studies we
have learned that genetics alone cannot predict the majority of
autism cases, the patterns of impairments, severity, nor can
they predict the success for current treatment modalities.
Moreover, we have learned that many of the molecular and
cellular systems that have been associated with autism risk are
the very same ones that are targets of environmental chemicals
currently of concern to human health, and children's health in
particular because of their widespread use. Current research is
needed on definable factors that contribute to causing or
protecting against autism.
It is accepted that autism is a multi-factorial, meaning
that there are multiple factors contributing to risk.
Therefore, it is essential to bring together both studies of
genes and environment to fully understand autism risk.
We know that autism prevalence continues to increase
dramatically, clearly implicating environmental factors in
autism risk. We must identify which environmental exposures and
combinations of exposures are contributing to the increased
overall risk in the population and identify the most
susceptible group within children, which are in themselves a
highly susceptible group.
Only by bringing together the concerted effort of multi-
disciplinary teams of scientists can we identify which of the
more than 80,000 commercially important chemicals, and a subset
of those, a very small subset have actually received sufficient
study, contribute to neurological impairments with idiopathic
autism. It is clear that there is a critical need to identify
which chemicals in the environment influenced the same
biological pathways known to be affected in autism and how this
contributes to susceptibility. By far, limiting exposures to
these chemicals is the only current way to mitigate and prevent
autism susceptibility in individuals.
Thank you. I would be happy to answer any questions.
[The prepared statement of Mr. Pessah follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Klobuchar. Thank you very much.
Dr. Lanphear.
STATEMENT OF BRUCE LANPHEAR, M.D., MPH, SENIOR SCIENTIST, CHILD
AND FAMILY RESEARCH INSTITUTE, AND PROFESSOR, SIMON FRASER
UNIVERSITY, VANCOUVER, BRITISH COLUMBIA, AND ADJUNCT PROFESSOR,
CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER
Dr. Lanphear. Thank you very much for the opportunity to be
here today.
I wanted to focus my testimony on other neurodevelopmental
disorders, because we have talked quite a bit about autism as a
window into why we should be concerned about chemicals,
particularly as they might relate to autism.
Children's environmental health has grown tremendously in
the past decade or two. It has been fueled by the emergence of
new morbidities or diseases in children. Research has shown
that fetus and child are particularly vulnerable to
environmental influences and toxicants in particular. Mounting
evidence is implicating environmental exposures as major risk
factors for some of the most common diseases and disabilities
in children. Finally, research indicating that many diseases of
industrialized societies in adults have their origins in early
childhood. So what happens during childhood has implications
for a person's ability throughout life to contribute.
In short, and in contrast--and this is important--in
contrast with many other types of research, this field of
research offers tremendous promise and potential to prevent
many of the diseases affecting America's children.
One in six American children has a developmental problem,
from a subtle learning disability to overt behavioral disorders
such as ADHD or autism. Although the data are sparse, many of
these diseases appear to be rising. The findings from some of
the most thoroughly studied and widely dispersed environmental
toxicants--such as lead, tobacco, PCBs, and mercury--indicate
that exposures to exceedingly low levels are risk factors for
deficits in intellectual abilities and executive functions.
Executive functions are those things that distinguish us most
clearly from other animals. None of us would be sitting here
today if we didn't have good executive functions.
So this is becoming increasingly important, if we want to
try to make sure that children can contribute to society.
We also know that they are major risk factors for behavior
problems such as ADHD and criminal behavior. These conditions
can severely impair a child's ability to succeed in school, to
interact socially. They can elevate a child's risk for violent
and criminal behaviors. And they can dramatically diminish
their ability to contribute to society.
We have heard about several other new emerging toxicants.
And there is indeed emerging evidence that a whole host of new
environmental chemicals, many of which are routinely found in
pregnant women and children, such as bisphenol-A, flame
retardants, pesticides, pthalates, and airborne pollutants, are
associated in early studies with intellectual deficits or
behavior problems although the evidence is not as conclusive as
some of the more established toxicants.
Much of the research I quoted from was from the NIEHS USEPA
Children's Centers in collaboration with the Centers for
Disease Control.
I wanted to share just a few highlights of the Cincinnati
Children's Environmental Health Center to highlight the impact
of a low-level toxicant, lead, on both children and society as
an indicator of the extent of the seriousness of what we have
always thought of as a subtle problem. In a series of studies
we found an increase in blood lead levels from less than 1
microgram per deciliter to 10 micrograms per decaliter, which
is well below the CDC's level of concern, were associated with
a 6 to 7 IQ point decrement. On a population level a shift in
IQ of 5 points across a population in the United States would
mean 3 and a half million more children who qualify as being
mentally retarded. These are not subtle effects.
We also confirmed early reports implicating childhood lead
exposure in the epigenesis of ADHD. As Dr. Birnbaum pointed
out, we estimated that one in three cases of ADHD in U.S.
children--that is over 1.5 million cases--could be attributed
to prenatal tobacco exposure--that is when the mom smokes--or
childhood lead exposure.
Finally, we have confirmed that childhood lead exposure is
a risk factor for impaired brain development, using brain
imaging studies, again, focused in particular on the prefrontal
cortex, that area responsible for executive function, as well
as criminal arrests in young adults. Collectively, these and
other studies suggest that a large proportion of crimes and
homicides in the United States over the past century can be
attributed to lead toxicity.
Now, we don't tend to think of low-level chemical exposures
as being of any consequence. But the levels we are talking
about are the same concentrations that we try to achieve with
therapeutic doses of anti-psychotics. We know these low-level
chemicals can have an impact on behavior.
It has been estimated, using these studies, that for every
dollar we invest in preventing lead exposure, we would benefit
by $17 to $20, or annually, somewhere between $30 billion to
$34 billion. I focused on just one toxicant. But I think they
indicate the importance of this kind of exposures that occur.
Finally, let me just end by saying that we have talked a
bit about the research. That is increasingly important. Still,
we can't ignore the pattern of pathology we have seen with
these other established toxicants: lead, tobacco, PCBs, and so
forth. It is clear to me that we know enough to require pre-
market testing for a whole host of other environmental
chemicals, particularly those that are used in high volumes.
The alternative, to continue to experiment on our children, is
no longer tenable.
We should also look back to the history of drug
regulations. For 50 years prior to drug regulations taking
effect in the 1960s, there was a handful of people arguing that
we needed better regulations. It took the thalidomide epidemic
for us to take action. Perhaps autism is the equivalent for
environmental chemicals.
Thank you.
[The prepared statement of Dr. Lanphear follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Klobuchar. Thank you very much.
Ms. Moen, thank you for being here.
STATEMENT OF MARY MOEN
Ms. Moen. Thank you, Senator Klobuchar.
I am happy to be here today with my husband, Steven, and my
10-year-old son, Max, from our home in Minneapolis, Minnesota.
Thank you for the opportunity to speak with you about the
effect of autism on my family.
When Max was 3 years old he was diagnosed with an autism
spectrum disorder. The diagnosis came after a year of fear and
frustration as our bright and active baby had become
increasingly agitated and aggressive as a toddler. As a pre-
schooler any social situation was very challenging for Max. He
became difficult to manage outside the home safely and was
increasingly bothered by loud and high pitched noises, smells,
and touch.
His reactions to things he didn't like were explosive and
often dangerous. His brother, Theo, was born during this time.
And the stress of a new baby and an uncontrollable 3-year-old
was more than we could bear.
We took Max for lengthy evaluations through Minneapolis
public schools and medical assessments at two different autism
specialty centers. The school district gave him an educational
label of autism spectrum disorder at age 3 and a half. The
doctors' and psychologists' reports gave similar findings.
At the time he was diagnosed, many around me were asking
how Max got autism. We suspect a genetic link, but the time it
didn't matter. I was focused on moving forward to help my son,
who was by now so obviously different from his peers.
Everything we read about treating autism told us that early
intervention was key. We bought books, went to conferences and
begged for consultations with over-scheduled experts in the
field. We learned what methods would be most effective for Max
but were frustrated to find waiting lists as long as 6 to 12
months at facilities that offered these services.
I quit my teaching job, and my husband cut back on his
orthopedic surgery practice. It became our mission to put
together an appropriate treatment plan that would address Max's
unique needs. We worked to tweak this plan for the next few
years of Max's life.
When he began kindergarten at age 6, we learned that our
local community school did not have an autism program. Although
Max's reading and math skills were far above grade level, his
poor social skills and lack of self-control meant he needed
more support. We had to send him to a school outside of our
community. And doing so created even more impediments to making
friends, and his social isolation was not improved.
Our goal was to bring his skills to a point where he could
be fully mainstreamed and moved to our community school by
first grade. This took a lot of hard work, including doubling
up on therapy and intensive summer programing. He has now been
at the school for 3 years.
Life was somewhat easier now, but not without struggles. We
made the difficult decision to give Max medication to control
his impulses and stay calm. Meltdowns come weekly, rather than
daily. Things like playing on a sports team, making friends,
and going to summer camp that are just natural steps in a
neurotypical child's life come carefully planned and prepared
for Max. Setting him up for success takes understanding his
challenges as well as a tremendous amount of time and
forethought.
So while things look pretty good right now, we never really
know what will set Max back or how long he will need our help.
We hope he will continue to excel academically and go on to
college and be a productive and happy adult.
In contrast, Max's 48-year-old aunt, who we suspect is also
in the autism spectrum, is unemployed, socially isolated, and
entirely dependent on her aging parents. People like her, with
undiagnosed and untreated autism, are an example of autism's
costs to our economy and society.
I now feel like I can look beyond our situation and address
some of the questions others were asking me when Max was first
diagnosed. There are many unanswered questions that can only be
answered through more research. As families of children with
autism, we each struggle with the why. The manifestations of
autism are as diverse as the families and communities from
which children with autism come.
I do not believe we can come to a simple conclusion when it
comes to the cause and effects of such a complex disorder as
autism. While there is an urgent and growing need for resources
for early identification and intervention, ongoing treatment,
medical care, and social services for children and adults with
autism, it is also imperative that we focus resources on
continued research so that we can one day identify its cause.
Until we have done the extensive research necessary to
understand autism, we cannot leave any stone unturned or rule
out any possible factors as a cause of this disorder.
Thank you for the opportunity to share my story with you
today. I welcome any questions you may have.
[The prepared statement of Ms. Moen follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Senator Klobuchar. Thank you so much. Thank you for your
courage.
She did a pretty good, right, Max? You liked it. You were
good.
So thank you for that, and all the work that you have done.
Your story sounds eerily similar to some of my friends who
basically gave up their jobs as well and focused on trying to
figure out what was wrong and then how to fix it. I would think
knowing the root cause would obviously make it a lot easier in
figuring out the treatment.
Could you just talk first about some of the impediments you
had in getting treatment? I know Minnesota is one of the
medical meccas and a good place to be when things go wrong. But
do you want to talk about some of the obstacles and what you
think could be done to improve that?
Ms. Moen. Definitely. Initially, there is a lot of shame.
Because the behaviors he was exhibiting were more embarrassing
than anything else. We called it the walk of shame, when we
would go walk down the hall to the preschool teacher to find
out what happened that day. So at first, just admitting that
there was something that was different from his peers.
It was fairly easy, living in a metro area, with the
Minneapolis public schools doing early childhood screening as
early as we needed it, to get him to special education. But the
appointments to get in with an autism specialist were 6 months
long, just to get a diagnosis. We didn't know it was autism at
that time, but we were looking at all of our different options.
Senator Klobuchar. And when you are here today, when you
listened to the testimony, I know you are out there about some
of the research that is going on, and this complex interaction,
as you have acknowledged, that it may not be just one silver
bullet, the solution, between genetics and environmental
factors, what is your reaction to that? You mentioned that you
thought it could have a genetic link, because of this aunt, I
assume.
Ms. Moen. Yes.
Senator Klobuchar. So what has been your own journey in
trying to follow the research and figure out what is going on?
Ms. Moen. My journey has been very recent, because I truly
haven't felt that I have been able to look outside of my little
world until very recently. I am not surprised, because I have
two sons. They both have the same aunt. One of them is
neurotypical; one of them is not. And there have always been
questions about what it could be, beyond that. I don't think we
can stop looking at that.
Senator Klobuchar. Thank you.
Dr. Pessah, we were talking earlier with Dr. Birnbaum about
this, the CHARGE study and what has been going on there. She
mentioned that you could help to further illuminate, there must
be preliminary findings, because it is not completed?
Mr. Pessah. There are.
Senator Klobuchar. On the immune system and the relation.
Mr. Pessah. The immune disregulation in children with
autism seems to be standing out based on comparisons with case
control comparison groups, including those with developmental
delays in the study without autism and neurotypical children.
If I had to sort of summarize what the major impairments are in
the immune system, it would be a pro-inflammatory sort of--pro-
inflammatory behavior of the immune cells in the presence of
antibodies that direct or recognize proteins within the brain.
We found these, or immunologists found these both in the
children, but also in the mothers. We have no idea how these
auto-antibodies, as they were called----
Senator Klobuchar. I got an A in high school chemistry, but
then I forgot everything the next week after the test. So could
you just try to explain that a little in layman's terms, what
you are talking about here?
Mr. Pessah. Sure. Pro-inflammatory behavior of the immune
system is essentially one hallmark of immune dysfunction. Pro-
inflammatory immune system can damage both immune responses but
also is now known to influence neurodevelopment, especially if
it occurs at very precise times during development.
Senator Klobuchar. So pro-inflammatory, is it kind of a
hyper-immune system, or it reacts a lot?
Mr. Pessah. Essentially hyper-responsive in a particular
way.
Senator Klobuchar. All right, so you have this hyper-
responsive immune system, and you mentioned that which, I guess
one could argue that, is that possibly it reacts to some
environmental factor?
Mr. Pessah. That is a very good point. We have actually
started to examine whether immune cells from children with
autism respond differently to what we call zenobiotic
exposures. The two that we have examined thus far is mercury,
and the other are the flame retardants. We picked the latter
because we now have evidence that flame retardants and others
have presented that flame retardants interfere with both the
developing nervous system and the immune system, possibly
through common mechanisms.
Senator Klobuchar. And what was the thing you said about
the protein in the cells? What was that about?
Mr. Pessah. That auto-antibodies are those antibodies which
recognize self. That is not really supposed to happen. Because
it can promote disease.
So in the mothers at risk for giving birth to an autistic
child, we found that a subset of them have antibodies that
actually can react with fetal proteins. What that means is that
during gestation these antibodies can cross the placental
barrier and have an influence, or have the possibility of
having an influence on the developing fetus.
Again, we don't know why mothers at risk would have these
auto-antibodies. This is something that we are examining now.
Senator Klobuchar. In your testimony, and this is along the
same lines, you said that genetics alone cannot account for the
majority of autism cases currently being diagnosed. Do you want
to elaborate on that?
Mr. Pessah. Yes. There are some genes that have been
associated with autism. But when you look at the percent of
cases which have these genetic malfunctions, for each gene it
is typically less than 1 percent. And in cumulative total, I
think the estimate may be as high but probably no greater than
20 percent, if you add all those up.
So there is a large fraction of autism that really, at
least at this point, has not been attributed to genetic
contribution.
Senator Klobuchar. I think you heard my story of these
Somalian kids in Minnesota. Maybe you have heard about this
before. Do you have any opinion on that and what could be going
on there?
Mr. Pessah. It is certainly intriguing and deserves more
study.
Senator Klobuchar. We will get you the information on it.
That would be helpful.
UC Davis is working on a project called MARBLES, right,
Markers of Autism Risk in Babies Learning Early Signs, to
identify early predictors of autism, whether genetic or
environmental? Can you be more specific in describing the
aspects of this project and what the intended goals are?
Mr. Pessah. This project, MARBLES, is recruiting women at
high risk of giving birth to an autistic child. This is based
on having inclusion criteria that the women must have already
at least one autistic child--biological child--in the family.
The goals of the study are to study the biology of the women
involved, including taking blood samples, urine samples, labor
and delivery samples, as well as following the child for the
first 3 years after birth.
Such a longitudinal study is now being modeled. It was the
predecessor of the EARLI study which Dr. Birnbaum described.
Thus far, we have about 170 women enrolled. Our target is about
200, at least for this project period. The retention of women
in the study, because it is a very arduous study for the
participants, has been better than 90 percent. So we are very
pleased.
Senator Klobuchar. Very good.
I guess this could be both of you, I will start with Dr.
Lanphear.
You mentioned the emerging evidence that new environmental
chemicals have been associated with autism or other
neurodevelopmental disorders. I think you focused on some of
the other ones. But that more research is needed. Can you
elaborate on the information gap, and do you think the NIH
priorities are on track, or the research that is being done
across the country?
Dr. Lanphear. Yes. First, I should say that using the same
framework, it is going to be extraordinarily important to begin
to understand mechanisms about how these chemicals may impact
children and at different stages of life. What we have begun to
do much more carefully over the last decade or so is to use
biomarkers, measure how much of a chemical actually a child or
an unborn child is exposed to, and then to see how that plays
out, how it impacts the trajectory of learning behaviors and so
forth.
So those kinds of studies will continue to be
extraordinarily important. One example has an interaction that
we have talked about, I think Dr. Anastas mentioned, if we look
at children and ADHD, if the mother smokes, the child is about
2 and a half times more likely to have ADHD. If the child is
exposed to lead, higher levels of lead in childhood, again
about a 2 and a half-fold increased risk.
Together, if they are exposed to high levels of both
tobacco and lead, which are both dopaminergic toxins, impacting
particular areas of the brain, they are over 8 times more
likely. So this idea of looking at interactions is really quite
important. In a sense, you could think of it in very much the
same way as genes and the environment. When they come together
there can be tremendous risks for different kinds of problems.
Having said all that, while it is critical to do more of
this research it seems to me that we do know enough to take
action and develop regulations. Now, even if we develop all
those regulations, there is still going to be plenty for all of
us to do. We are not going to be out of work, although that
would be wonderful, if you could develop regulations that would
put me out of work.
[Laughter.]
Dr. Lanphear. But I do think the balance here is making
sure that we act on the evidence that we have. And that doesn't
mean that each new chemical has to be studied to death. We
could look at the pattern that we have seen with other
environmental toxicants. And based on that, just like we took
regulations, took and developed regulations based on drugs, we
can develop the regulations. And yet of course there is still
quite a bit that needs to be done to look at these new emerging
chemicals, some of which are acting as endocrine disruptors,
others as neurotoxicants, or traditionally, like lead, impact
other parts of the body.
Senator Klobuchar. You mentioned the biomarkers. Could you
go into a little detail about how that will help, not only with
trying to find root causes, but prevention, diagnosis,
treatment?
Dr. Lanphear. That is extraordinarily important. In the
past we might have to rely on asking a pregnant woman, how
close did you live to this plastics plant. That is not a very
good way of measuring exposure. Now what we can do is take
exquisite measures of exposures that might occur over
pregnancy, for example.
So in our Cincinnati home study, what we have done is by--
--
Senator Klobuchar. By exquisite, you don't mean like
jewelry. What do you mean?
Dr. Lanphear. Exquisitely accurate measures of chemicals
that the pregnant woman is exposed to in either her diet or
airborne exposures. And look at those at different times. So we
have measures three times during pregnancy in the Cincinnati
home study, at 16 weeks gestation, 26 weeks, and at delivery.
What we can do is begin to ask questions, not only about
exposures throughout pregnancy, by taking the sum of those, but
whether there is a difference, for example, in the timing of
exposure.
So when we looked at bisphenol-A, a plastic, we found that
exposures at 16 weeks gestation were associated with acting out
type behaviors in the daughters but not in the sons. Now, that
needs to be confirmed. That is the type of research that we
can't make policy based upon one study. But what it suggests is
the timing is important, looking sometimes at gender
differences or sexually dimorphic behavior differences, based
on a chemical.
But we couldn't have done that without a biomarker. So it
is really critical to be able to measure exposures to
chemicals.
Senator Klobuchar. I get that.
Dr. Pessah, do you want to add anything with the
biomarkers? Because I understand them now. We are almost on
equal footing. I am kidding.
[Laughter.]
Mr. Pessah. I think that by identifying classes of
compounds, in the future we may be able to invoke a
precautionary principle where, if a chemical has chemical
properties that will know to be bioaccumulated--that is,
retained in the body--if children are more exposed, as you
mentioned, that we might be able to predict, as opposed to
having to test every chemical.
There are various levels of testing chemicals, from the
cellular, the mechanistic, to the epidemiological approach.
Given the vast number of high volume and even greater number of
other chemicals in the environment, it behooves us to try to
find some commonalities amongst chemicals in their mechanism of
producing harm.
Senator Klobuchar. What about this fact that Dr. Lanphear
was talking about, that boys seem to have a higher rate of
autism? I think that is correct. I am just trying to understand
this. He talked about the interrelationship with gender. Any
ideas there?
Mr. Pessah. I think that is an important factor that needs
to be acknowledged in current and future research, that
obtaining cells from males may be different than obtaining
cells from females, in terms of the level of susceptibility, or
the nature of the response to environmental chemicals. So we
need to keep that in mind.
Senator Klobuchar. So if we could just write you a blank
check right now, which sadly we can't, what would you most, if
you could just conduct the research that you wanted to, in a
big way, and I know there are limits on research, but if you
could do that, where would you want to focus the research? No
constraints from anyone about telling you what it should be or
what pot of money it comes from. If you just wanted to figure
out an answer for Mary Moen's question about why, what would
you do?
Mr. Pessah. Because of the complexity of autism spectrum
disorders, our lesson learned at UC Davis is that you need a
multi-disciplinary approach. You need to have immunologists
talk to neuroscientists talk to toxicologists and pool their
efforts, integrate their efforts in understanding this very
complex disorder. So granted, very large science will address
more global issues.
I think concerted studies of specific populations will give
you valuable answers that could lead to mitigation of autism.
Senator Klobuchar. Do you want to answer that, Dr.
Lanphear?
Dr. Lanphear. Yes. Given the prevalence of autism, even
though it has risen in recent years, I think the kind of study
you would want to do would be prospective, it would be large.
And you would have multiple measures of various chemical
exposures, or the opportunity to go back, using a repository,
collecting blood or urine and so forth and storing it. And
looking at the children as they develop.
That would of course be augmented by a whole host of other
types of studies, looking very specifically at questions. But
that kind of large birth cohort study, like the National
Children's Study, I think is going to be an essential part of
understanding the risk factors for the development of autism
and ASD.
Senator Klobuchar. Very good.
I want to thank all of you for coming. We will keep the
record open for 2 weeks, and I am sure my colleagues may have
some follow up questions. But I wanted to commend you for the
work you are doing. I think that Ms. Moen said it best when she
said she is just now, after struggling and doing everything for
Max, gotten out of that. I know how that one feels, that one
box, to start stepping back and asking why. I think that is
what a lot of us are doing on behalf of moms and dads like her
across the country.
It does appear that the solution may not be an easy one,
but that this interaction with genetics and the immunology as
well as the environmental factors is where we should head. So I
want to thank you for all the research you have done.
Dr. Pessah, I think you should try to go head to head with
Max on a math question when we are done, and see how he does
there. Because he is supposed to be a math whiz. We will see
how he does.
So thank you, everyone, for coming. The hearing is
adjourned.
[Whereupon, at 11:35 a.m., the Subcommittee was adjourned.]
[An additional statement submitted for the record follows:]
Statement of Hon. James M. Inhofe,
U.S. Senator from the State of Oklahoma
As a father and grandfather, protecting the health of
children--born and unborn--is a personal priority for me. I
would like to thank Senator Klobuchar for scheduling this
important hearing to discuss new developments in autism and
other neuro-development disorders.
Autism and related developmental disorders affect
approximately 1 in 110 births and are growing at an alarming
rate of 10 to 17 percent per year. At this rate, there are
estimates that the prevalence of autism could reach 4 million
Americans in the next decade. Autism and similar disorders have
no ethnic, racial, or social boundaries and can affect any
family or child indiscriminately. Autism has increasingly been
identified as a mostly complex genetic disorder, but some
environmental factors may also be linked to its causes.
I have always championed the use of the best available
science to properly assess the risks these devastating
disorders have on children and families. Due to the increasing
rates of autism in children, the Committee must ensure that the
best available scientific research is conducted and appropriate
funding is directed toward these causes.
Both the Environmental Protection Agency and the National
Institute of Environmental Health Sciences have dedicated
resources to research the environmental health factors
associated with autism, and I look forward to hearing from the
witnesses on the status of these ongoing studies. I invite the
agencies and experts to identify areas where there may be
inefficiencies or lack of sufficient information so we can
address these issues and make certain that proper resources are
being dedicated to the most appropriate areas of study.
The rise in autism is a very serious problem facing our
Nation's children and families, and I will stay committed to
discovering the causes and finding treatments. I look forward
to hearing the results of the agencies' findings and how the
Federal Government can enhance and improve its research
efforts.
[all]