[Senate Hearing 112-828]
[From the U.S. Government Publishing Office]
S. Hrg. 112-828
OVERSIGHT ON DISEASE CLUSTERS AND ENVIRONMENTAL HEALTH
=======================================================================
HEARING
BEFORE THE
COMMITTEE ON
ENVIRONMENT AND PUBLIC WORKS
UNITED STATES SENATE
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
__________
MARCH 29, 2011
__________
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__________
COMMITTEE ON ENVIRONMENT AND PUBLIC WORKS
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
BARBARA BOXER, California, Chairman
MAX BAUCUS, Montana JAMES M. INHOFE, Oklahoma
THOMAS R. CARPER, Delaware DAVID VITTER, Louisiana
FRANK R. LAUTENBERG, New Jersey JOHN BARRASSO, Wyoming
BENJAMIN L. CARDIN, Maryland JEFF SESSIONS, Alabama
BERNARD SANDERS, Vermont MIKE CRAPO, Idaho
SHELDON WHITEHOUSE, Rhode Island LAMAR ALEXANDER, Tennessee
TOM UDALL, New Mexico MIKE JOHANNS, Nebraska
JEFF MERKLEY, Oregon JOHN BOOZMAN, Arkansas
KIRSTEN GILLIBRAND, New York
Bettina Poirier, Majority Staff Director and Chief Counsel
Ruth Van Mark, Minority Staff Director
C O N T E N T S
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Page
MARCH 29, 2011
OPENING STATEMENTS
Boxer, Hon. Barbara, U.S. Senator from the State of California... 1
Crapo, Hon. Mike, U.S. Senator from the State of Idaho........... 3
Lautenberg, Hon. Frank R., U.S. Senator from the State of New
Jersey......................................................... 4
Johanns, Hon. Mike, U.S. Senator from the State of Nebraska...... 5
Whitehouse, Hon. Sheldon, U.S. Senator from the State of Rhode
Island......................................................... 5
Boozman, Hon. John, U.S. Senator from the State of Arkansas...... 138
Inhofe, Hon. James M., U.S. Senator from the State of Oklahoma... 143
WITNESS
Schaefer, Trevor, youth ambassador and founder, Trevor's Trek
Foundation..................................................... 6
Prepared statement........................................... 9
Pictures................................................. 20
National Disease Clusters Alliance, Putting Children
Above Politics......................................... 22
Responses to additional questions from Senator Inhofe........ 46
Brockovich, Erin, president, Brockovich Research and Consulting.. 46
Prepared statement........................................... 50
Map of Concerns About Disease Outbreaks.................. 57
Responses to additional questions from:
Senator Boxer............................................ 58
Senator Inhofe........................................... 59
Belzer, Richard B., president, Regulatory Checkbook.............. 61
Prepared statement........................................... 63
Responses to additional questions from Senator Inhofe........ 84
Solomon, Gina, senior scientist, Natural Resources Defense
Council........................................................ 88
Prepared statement........................................... 91
Report, Natural Resources Defense Council, Health Alert:
Cancer Clusters, Disease, and the Need to Protect
People from Toxic Chemicals............................ 100
Responses to additional questions from:
Senator Boxer............................................ 129
Senator Inhofe........................................... 131
OVERSIGHT ON DISEASE CLUSTERS AND ENVIRONMENTAL HEALTH
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TUESDAY, MARCH 29, 2011
U.S. Senate,
Committee on Environment and Public Works,
Washington, DC.
The committee met, pursuant to notice, at 10 a.m. in room
406, Dirksen Senate Office Building, Hon. Barbara Boxer
(chairman of the committee) presiding.
Present: Senators Boxer, Crapo, Lautenberg, Whitehouse,
Johanns and Boozman.
STATEMENT OF HON. BARBARA BOXER, U.S. SENATOR FROM THE STATE OF
CALIFORNIA
Senator Boxer. The Committee will come to order. I would
like to begin by thanking our witnesses for coming here today.
You traveled long distances and we are very appreciative of
that.
In particular, I want to welcome Trevor Schaefer, a brave
young man, who has overcome so much in his life already. I met
him when he was much younger. He beat cancer that he got when
he was just a child and he is inspiring a lot of people to make
sure that others don't have to go through the same thing.
Trevor has come out of his experience with great purpose.
He has decided to devote his life to helping children who also
face the frightening reality of having to beat cancer. Trevor
and our other distinguished witnesses are here to testify on a
very important issue, the need to better protect our families
and our communities from dangerous diseases that occur in
clusters.
I would like to also recognize the two other witnesses from
my State of California: Ms. Erin Brockovich, who I think needs
no further introduction. We all know of her work. Dr. Gina
Solomon, who has done a tremendous amount of work on cancer
clusters.
Without a doubt, our country has made great strides in
addressing devastating diseases that were once commonplace. Our
Nation invested in drinking water treatment plants and waste
water treatment facilities, and these facilities are now
essential parts of our public health infrastructure.
Despite these great advances, we still have more work to do
to address diseases such as cancer and birth defects that take
the lives of our children and our family members. According to
the Environmental Protection Agency, from 1975 to 2007, rates
of childhood cancer have increased by more than 20 percent. I
want to say that again. According to the EPA, from 1975 to
2007, rates of childhood cancer have increased by more than 20
percent. So consider this hearing an alarm bell. The country
needs to pay attention to a statistic like this.
According to the National Cancer Institute, leukemia is the
most common form of childhood cancer, accounting for 20 percent
of the incidences. The greatest number of childhood cancers
occurs during infancy, the first year of life. Our youngest and
our most vulnerable in our society should not have to shoulder
such a devastating burden.
When the same disease suddenly impacts an entire family or
an entire neighborhood or an entire community, people are
rightly concerned that a common factor is the cause. Scientists
don't always know the exact cause of the cancer, but we know
that when we look at cancer, they usually find it is genetics
or environmental causes.
Just last year, the President's Cancer Panel said that ``It
is particularly concerned to find that the true burden of
environmentally induced cancer has been grossly
underestimated.'' Let me repeat that. ``The true burden of
environmentally induced cancer has been grossly
underestimated.''
I would ask unanimous consent to enter into the record this
report from the President's Panel.
Without objection, I will do that.
[The referenced information was not available at time of
print.]
Senator Boxer. The Panel urged the Federal Government ``to
remove the carcinogens and other toxins from our food, our
water, our air that needlessly increase health care costs,
cripple our Nation's productivity, and devastate American
lives.''
Clearly, efforts to address diseases such as childhood
cancer and birth defects deserve focused, coordinated and
effective action at every level of government so that we
respond in the most effective manner when a cluster occurs.
That is why I introduced, along with Senator Crapo, S. 76, the
Strengthening Protections for Children and Communities from
Disease Clusters Act. S. 76 is designed to increase
coordination, transparency, accountability when Federal
agencies work to invest and address potential disease clusters.
It is designed to give people and communities a seat at the
table to better understand such investigations.
If we learned anything from the battle about chromium VI,
we learned that the community was just at sea and didn't know
where to turn. They had to turn to an attorney and his able
assistant to find out that things were going on in the
community that were mimicking their own experiences.
This bill by itself is not going to end disease clusters.
We know that. But it is an important step in helping our
communities effectively investigate and address devastating
diseases that still impact our families, our neighborhoods and
our society.
The critical importance of our bill can be stated in a
simple way. If by working together we can establish the cause
of a disease cluster, we can then take steps to end the problem
and not waste precious time when so much is at stake, the very
health of our families. That is the simple truth about our
bill.
Now I am delighted to call on my co-sponsor, Senator Crapo.
STATEMENT OF HON. MIKE CRAPO, U.S. SENATOR FROM THE STATE OF
IDAHO
Senator Crapo. Well, thank you very much, Madam Chairman. I
appreciate working with you on this legislation and I
appreciate your calling this oversight hearing on disease
clusters and environmental health.
This is an important issue, as you have indicated, and I
really am glad that our committee is looking into it.
I want to thank our witnesses for coming today, Erin
Brockovich, Dr. Belzer and Dr. Solomon. We appreciate your
making the time to be here and appreciate the information and
testimony that you are going to provide.
I want to extend a special welcome to Trevor Schaefer who,
as the Chairman has indicated, is from Idaho and he himself has
an incredible history that helps us to address this issue.
Trevor is the Founder of Trevor's Trek Foundation and we in
Idaho are proud that he is there doing this great work.
When he was just 13 years old, Trevor was diagnosed with
brain cancer. With the love and support of his family, and I
want to point out that his mother, Charlie Smith, is also here
today.
Senator Boxer. Stand up, Charlie, if you would. Would you
stand for a second?
Senator Crapo. Charlie, thank you for being with us.
Trevor relocated from McCall, Idaho to undergo surgery,
radiation, and chemotherapy. After surviving and recovering
from his grueling ordeal, Trevor decided that he wanted to help
children with cancer. So in 2007, along with his mother,
Charlie, he founded Trevor's Trek Foundation.
Through raising awareness and research funds, to providing
mentoring services for young cancer survivors, the Foundation
is a shining example of how the selfless actions of an
individual can make a real difference in the lives of those in
need.
As if Trevor's work at the Foundation isn't enough, Trevor
is also a volunteer with the Make-A-Wish Foundation in Idaho,
and he has helped the Comprehensive Cancer Alliance for Idaho
to create the Childhood Cancer Strategic Plan. He is also a
Youth Ambassador for the National Disease Cluster Alliance and
has organized the first childhood cancer awareness walk in
Idaho.
You can see that he is very committed. All of these things
have been achieved by a young man who just graduated from Boise
State University in 2008.
I am very happy that you could join us today, Trevor, and
thank you for coming and we look forward to your testimony. We
are very appreciative of the incredibly hard work you have put
into these kinds of issues.
Madam Chairman, let me just say briefly that I appreciate
the opportunity for this committee to take a closer look at the
issue of disease clusters. While we have heard quite a bit
about them through books and movies such as Erin Brockovich and
such as Jonathan Harr's A Civil Action and others, we have not
had a recent detailed discussion about them here in Congress,
but we should. Thanks to the effort of people like Trevor and
Charlie and Erin and our other witnesses, we will.
Today's hearing begins that discussion and I look forward
to hearing from our experts about the scientific research
behind the causes of disease clusters, the coordinated response
between Federal, State and local governments, and any other
information that may be helpful to us.
Thank you again, Madam Chairman. That concludes my
statement.
Senator Boxer. Thank you so much.
I was remiss. I wanted to introduce another Californian who
is sitting next to Trevor's mom, Charlie. This is a woman who
brought this particular issue to my attention. She has worked
with the family and is an advocate for the family and is an
author.
Susan Rosser, will you stand up? I am so proud that you are
here and we are very proud of you in California.
Now it is a pleasure to call on Senator Lautenberg.
STATEMENT OF HON. FRANK R. LAUTENBERG, U.S. SENATOR FROM THE
STATE OF NEW JERSEY
Senator Lautenberg. Thanks very much, Madam Chairman.
Many of us in this room are parents, grandparents, and we
spend our lives trying to protect our children and keep them
safe.
Trevor, my hat is off to you for the work that you have
done. You are a living example of what happens when one has
courage and determination, and we thank you for what you have
done.
No parent should ever have to be afraid to send their child
into the backyard, to a neighborhood park or to a school
because it might make them sick, yet this is the reality facing
parents who live in communities where residents are under
assault from diseases such as cancer.
For example, in the 1990's a cancer cluster was discovered
in Toms River in New Jersey where children were being diagnosed
with leukemia and brain cancer at alarmingly high rates. Toms
River is the home of two Superfund sites and a number of
industrial facilities. An investigation of Toms River by the
State and the Centers for Disease Control and Prevention found
an association between mothers who drank contaminated water and
children who developed leukemia.
Now, science tells us that children are especially
vulnerable when they encounter dangerous substances. Studies
show as much as 5 percent of childhood cancers, 10 percent of
neurobehavioral disorders and 30 percent of childhood asthma
cases are associated with hazardous chemicals.
Make no mistake, you don't have to live near a Superfund
site to be exposed to potentially harmful chemicals. They are
all around us. Testing by the non-profit Environmental Working
Group found more than 283 industrial chemicals in newborn
babies and more than 400 in adults that they tested. Additional
testing by the CDC also found hundreds of industrial chemicals
in adults, including six carcinogens.
Studies show that kids whose mothers had high levels of
certain chemicals in their blood are more likely to have
behavioral and health problems. That is why we have to create
stronger and more regulation of chemicals that could harm our
children, an issue that we ought to be tackling on several
fronts.
I will soon introduce an updated version of my Safe
Chemicals Act, which would require that chemical manufacturers
prove that their products are safe before those substances end
up in our bodies. I received helpful feedback on the bill last
year and I will incorporate ideas that further improve the
bill.
I am committed to working with colleagues from both parties
to modernize the Toxic Substances Control Act in a way that
protects public health and works for businesses. But the need
is too urgent to wait while our children continue to be exposed
to untested chemicals. I am going to be working with Chairman
Boxer to mark up a bill in the coming months.
We also must pay close attention to what is happening in
communities where disease clusters are present, and kids face
the greatest risk. Now, I am proud to cosponsor Chairman
Boxer's legislation to make it easier for State and Federal
agencies to work together to investigate disease clusters and
educate communities about them.
The bottom line is that we have to do more to protect our
children and grandchildren from conditions and substances that
could damage their health and shorten their lives.
So I look forward to hearing from today's witnesses about
how we can create a healthier environment for everyone, and
particularly our children.
I thank you very much, Madam Chair.
Senator Boxer. Thank you very much, Senator.
We are going to call on two Senators that are coming now in
a moment. I want to ask unanimous consent to place in the
record support for the Boxer-Crapo bill from the Children's
Environmental Health Network, the Breast Cancer Fund, the
Sierra Club, the Center for Health, Environment and Justice in
Virginia, the National Disease Clusters Alliance. I want to
make sure we get that done.
[The referenced information was not available at time of
print.]
Senator Boxer. I also want to put in the record the disease
clusters in California that were identified by the NRDC and the
National Disease Clusters Alliance, eight sites where they
found these clusters. So we will put those in the record.
[The referenced information was not available at time of
print.]
Senator Boxer. Senator Johanns, you are up next.
STATEMENT OF HON. MIKE JOHANNS, U.S. SENATOR FROM THE STATE OF
NEBRASKA
Senator Johanns. Madam Chair, thank you for the
opportunity, but I have been called to the floor in about 15 or
20 minutes to speak, so I am going to pass. If I have anything,
I will offer it in written form. Again, thanks for the
opportunity.
Senator Boxer. Thank you so much, Senator.
Senator Whitehouse.
STATEMENT OF HON. SHELDON WHITEHOUSE, U.S. SENATOR FROM THE
STATE OF RHODE ISLAND
Senator Whitehouse. I will follow the good Senator's
example so that we can get on to the witnesses. But I wanted in
particular to welcome Ms. Brockovich. We were together years
ago on the Children's Health Environmental Coalition, which is
a wonderful organization in the Chairman's home State, and I am
delighted to welcome her here to Washington.
So thank you, Madam Chair, and I appreciate the way you and
Senator Crapo have worked together on this.
Senator Boxer. Thank you so much.
Well, we will get right to our witnesses. Our first
witness, Trevor Schaefer, Youth Ambassador and founder of
Trevor's Trek Foundation, has been such an inspiration to me
personally and so many people and inspired me to work with
Senator Crapo on this legislation. So we are honored to have
you.
Trevor, you have 5 minutes, but if you go over a couple of
minutes, that is fine. Go ahead.
STATEMENT OF TREVOR SCHAEFER, YOUTH AMBASSADOR AND FOUNDER,
TREVOR'S TREK FOUNDATION
Mr. Schaefer. Thank you, Chair Boxer.
I would also like to thank Ranking Member James Inhofe and
my great Senator, Mike Crapo for taking on the issue of
childhood cancer and cancer clusters, and what they mean to our
public health.
I would also like to thank all of the Senators on the
Environment and Public Works Committee for allowing me to
address some of these issues today. I am so very proud to be
able to State that I am here today as a witness for both the
majority and minority committee Members.
Most of you do not know me other than I am associated with
S. 76, also known as Trevor's Law. My hope is that by the end
of my testimony, you will not only know me, but you will
remember me as the voice of every child in this great Nation.
As you have been told, I was diagnosed with brain cancer at
the age of 13. Until that time, I was thriving in McCall, a
small town nestled on the banks of a glacial lake in the
beautiful mountains of Idaho. I really had a fairytale life in
paradise. But the carefree days of my childhood changed
abruptly and dramatically after my cancer diagnosis.
Like a snap of the fingers, I was robbed of my childhood
and my innocence. I was thrown into the antiseptic world of
hospitals in 8-hour brain surgery, followed by 14 grueling
months of radiation and chemotherapy treatment. Unfortunately,
I was not the only kid in my town with this pernicious disease.
In the same year that I was diagnosed, there were four
other cases of brain cancer diagnosed. Over a 10-year period,
there was an abnormally high number of cancer cases diagnosed
there before and after I became ill. What happened in my town
continually repeats itself throughout our Nation year in and
year out.
According to the CDC, 46 children per day, two classrooms
full, are being diagnosed with cancers unrelated to genetic or
family history. As Trevor's Law states, cancer is the second
leading cause of death among children, exceeded only by
accidents.
Many of us young cancer survivors will forever face chronic
health challenges resulting from the heroic medical measures
used to save our lives. Children who have had cancer often
experience confusion and embarrassment as they try to return to
a so-called normal life and are dealing with the physical side
effects related to their cancer and treatment. I can attest to
that.
Several years ago when cancer struck me, I fought so hard
for my life. I fought through the countless number of needle
pricks, the blood transfusions, nausea, vomiting, and physical
therapy, so I could live to see the sunrise and the snowfall. I
am so grateful to be alive.
Still, the aftermath from the cancer treatments that I have
endured have affected me in many disturbing ways. Every
morning, I wake up with a ringing in my ear which never stops.
I have trouble with my memory and I may never be able to have
children of my own. How ironic that I fought so hard to save my
own life, yet now I may never be able to give life.
Senators, I am considered one of the success stories.
Although there has been a significant increase in the cure rate
of childhood cancer, children still are getting sick at an
increasingly steady rate. In small towns throughout our
country, possible cancer clusters exist. Parents are trying to
get authorities to investigate these clusters and to discern
what caused the disease patterns. Scientists and health
activists say that the government's current response to disease
clusters ranges from piecemeal to non-existent. Some people are
told that their small populations render them statistically
insignificant.
There is nothing insignificant about even one child
diagnosed with cancer and then dying of that cancer without
ever knowing why. Trevor's Law seeks to rectify that by
allowing people in small communities to have their voices heard
and their concerns validated about the environmental impacts on
their children's health.
Environmental toxin exposure is insidious in all instances,
yet it affects our children in greater proportion than adults.
Children are more vulnerable to chemical toxins than adults
because they have faster metabolism and less mature immune
systems.
According to Dr. Sandra Steingraber, we are seeing more
brain tumors in 4 year olds, ovarian cancer in adolescent
girls, and testicular cancer in adolescent boys. These cancers
are rising rapidly and, of course, children do not drink, smoke
or hold stressful jobs. We therefore cannot really evoke
lifestyle explanations.
There are no good familial links that we know of. We are
beginning to recognize that not only prenatal life, but
adolescent life is a time of great vulnerability to cancer-
causing chemicals when the connection between health and the
environment becomes even more important.
Toxins migrate right through geographical boundaries and
property lines. Cancer spares no ethnic group, no socioeconomic
group, nor any geographical area. In its wake, we are left with
the burden of extreme personal and social loss.
I would also like to stress that cancer does not only
attack the victim. It greatly impacts every member of the
family. Siblings often experience concern, fear, jealousy,
guilt, resentment and feelings of abandonment which can last
long term. Relationships between family members can become
tense. There can be stress on a marriage and oftentimes a
family breaks up.
I vowed that if I survived, I would dedicate my life to
helping other children with cancer who otherwise would never be
heard. I truly believe that I have been given a second chance
at life to convey to you the urgency and importance of
addressing the proliferation of childhood cancer clusters and
the methods of reporting them. For the children, I strongly
encourage your support for Trevor's Law.
In closing, I would ask you to consider how much your child
or grandchild's life and well being are worth to you. While you
are doing that, please close your eyes for a brief moment and
imagine a world without children.
Thank you.
[The prepared statement of Mr. Schaefer follows:]
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Responses by Trevor Schaefer to Additional Questions from Senator
Inhofe
Question 1a. In your opinion, if we in Congress had to take away
the most important message of your testimony, what goals of yours would
you find most essential to be written into law?
Question 1b. Would you support potential changes to S. 76 that
create a stronger and more thorough registry for disease clusters,
improve coordination among agencies with the relevant expertise to
investigate and report disease clusters in a timely manner, ensure
small communities a place at the table, and didn't shift primary
authority in this process to EPA? In other words, is it your goal to
have EPA in the lead role, or would you be supportive of allowing
another agency, such as the Agency for Toxic Substances and Disease
Registry, to be in charge?
Response. I believe that questions 1 and 2 must be answered
together, since our goals are one in the same with the ideas put forth
in question 2.
We want the Senate to accept that we need a more efficient,
standardized method for collection of potential cancer cluster data
with a quicker response time. In that way, we will be able to keep
cluster cases small and less costly to eradicate both environmentally
and medically. Fewer lost business days, fewer lost jobs, and less
costly medical care. All around, this would be cost-effective.
We want improved coordination among agencies with the relevant
expertise to investigate and report disease clusters in a timely
manner. Waiting until a brush fire becomes a raging inferno only makes
putting out the fire more costly in lives taken and the future well-
being of the affected community.
We have championed the concept of bringing smaller communities into
the mix, offering them a place at the table. I grew up in a small town,
McCall, Idaho. I swam in a lake that was a probable source of toxins. I
came down with brain cancer in 2002 at the age of thirteen. That year
there were four others like me. We were told by the Idaho Tumor
Registry that we were too statistically insignificant to warrant a
cancer cluster study. That is just wrong. And short-sighted. Since my
diagnosis, there continues to be a plague of cancers and other diseases
in young people in many small communities in Idaho. What we've seen in
Idaho repeats itself countless times across this great nation. If some
agency had listened to our citizens and come into McCall early on, I
might have been spared a life-time of residual illness, pain and
suffering, as would have others. Small communities must be heard.
And most important, we have never advocated that Trevor's Law can
only work with the EPA in the lead role, and to that end we would
welcome the ATSDR in a co-lead joint committee with the EPA. When we
first met with Senator Boxer 3 years ago to present our concept for a
new piece of legislation, we told her our goal finally was to
standardize reporting at all levels of government and give our children
and small communities a voice. She looked at the EPA as a possible
place for our ideas to take root and find a home. Since S. 76 was
written into its present form as a truly bi-partisan bill with the full
support of Senator Crapo, and since it has passed out of committee
awaiting a vote in the US Senate, we have spoken to Senator Boxer
again. She assured us that she is completely committed to a bi-partisan
solution as to where the legislation will be administered. If you feel
that you can support S. 76 by making this change, then let's get it
done.
We at Trevor's Trek Foundation understand that the economy and
getting it back on its feet is the No. 1 priority of both houses of
Congress. As it should be. We are patient. We would rather you approach
this bill when it has the best chances of support by both sides of the
aisle. If that means delaying the vote, so be it. But we also know that
every day that another child comes down with cancer from possible
exposure to toxins in his or her environment and we do nothing, we edge
ever closer to being derelict with our future. As I said in my address
to the EPW committee: ``Imagine a world without children.''
Senator Boxer. Thank you.
Erin Brockovich, who is such a fighter for people who did
nothing wrong and suffered, and I am welcoming you and Trevor.
You touched our hearts deeply and I thank you.
STATEMENT OF ERIN BROCKOVICH, PRESIDENT, BROCKOVICH RESEARCH
AND CONSULTING
Ms. Brockovich. Chair Boxer and distinguished Members of
this committee, thank you for the opportunity to testify today.
My name is Erin Brockovich. As an environmental and
consumer advocate, I respond to requests for help in
groundwater contamination complaints in all 50 States. I
currently work on investigations in California, Texas, Florida,
Michigan, New York, New Jersey, Alabama, Louisiana, Illinois,
Mississippi, and Missouri. I am also a proud mother of three
wonderful children, two of whom are presently serving their
country as soldiers in the U.S. Army, one currently deployed in
Afghanistan.
Each month, I receive over 40,000 visitors to my website,
thousands of whom report issues ranging from environmental
pollution, cancer and disease, worker injury and illness, and
more. These people make up whole communities that are
witnessing first-hand the harmful effects that exposures to
chemicals such as hexavalent chromium have had on them. These
communities, both large and small and in every corner of the
United States, are sending out an SOS.
From small farming towns like Cameron, MO to small desert
towns like Midland, TX, to the forgotten town of Leadwood, MO,
where the lead mining tails are so large that children think
that they are hills and they play on them. In passing as the
children wave, it is startling to see the palms of their hand
gray, soaked in lead dust.
Unfortunately yet again in Hinkley, CA, this has becoming
an all too common occurrence. It would appear that most of
these communities are under siege by one form of pollution or
another. Protecting the health of our families and our children
should be top priorities for us all. Yet the system for
investigating, responding and reporting these concerns is
inadequate. This is why I strongly support S. 76, the
Strengthening Protection for Children and Communities from
Disease Cluster Act, also known as Trevor's Law in honor of
this brave young man, Trevor Schaefer.
Trevor's Law will bolster Federal efforts to assist
communities that are impacted by potential disease clusters and
will identify sources of environmental pollutants and toxic
substances suspected of causing developmental, reproductive,
neurotoxic and numerous cancerous and other adverse health
effects.
According to the CDC in 2011, one in three people will
develop cancer in his or her lifetimes, one in three. As an
advocate for the past 20 years, I have reached an undeniable
conclusion there are simply too many cancers in this country
and not enough answers.
That is what these communities who reach out to me are
trying to do, get answers to the most basic questions. Why is
my child, who was perfectly healthy, now sick with leukemia?
Why does my daughter have a brain tumor at the age of 10? Why
is the same thing happening to my neighbors' kids? Hundreds of
mothers and fathers ask me these questions every week.
Today, I would like to share with you a map over here to my
left, that I have put together over the past 6 months of
communities that have come to me with concerns of what they
believe and they are seeing to be excessive cancers in their
neighborhoods and communities. There are 534 dots on this map
today, and what makes me sad is I still have hundreds that I
have yet to position on the map.
The statistics appear to be alarming. These are mothers
reporting to me six children on the same block with leukemia.
These are mothers reporting to me 15 children within blocks of
one another who have glioblastomas. In some instances, it is
nurses reporting to mothers the large numbers of pediatric
cancers they are seeing in certain communities.
This work is being done ad hoc by concerned citizens. We
must gather data from the field and act. We must develop
national strategies for identifying actionable information. We
must take a combined arms approach, if you will, to the battle
against disease of our own making.
When I talk about this issue, I think of my son who is
fighting a war in Afghanistan. If I were suddenly to find
myself in the field of conflict, it would not matter how
credentialed I was, environmentalist, Ph.D. or U.S. Senator. I
would take my lead from those who had been on the ground. Make
no mistakes, I feel as if we are in a war here at home.
In this battle, we look to you as our commander. On that
map, those constituents, your troops, they are sending you a
message, but we are not listening. While the map is not
scientific, it does show first-hand experiences of providing us
the data that we need. They are reporting to me for help
because they are concerned that the pollution in their towns is
what is making them and their children sick.
I will continue to work diligently to gather greater
information and report what it is that they are seeing. This
map, I believe, begs us all to do so.
We must listen and learn from what these people in the
affected communities are telling us. We can't just sit back in
the safety of our offices and our own homes and hear these
stories and think that isn't possible. The reports say it can't
happen.
I am here to tell you today that they do happen and they
are happening.
In April 2010, the President's Council declared that the
number of cancers caused by toxic chemicals is grossly
underestimated and warns that Americans face grievous harm from
the largely unregulated chemicals that contaminate our air and
water.
I was born and raised in a very simple, beautiful lifestyle
in Kansas. I happened to be raised by a very strong Republican
and military man who actually worked for industry and the U.S.
Government as an engineer. He is the very person that taught me
the value of clean water, good land, good health and the
respect of one another.
It always amuses me when someone believes I have a certain
party's affiliation. I find it disturbing for those who assume
the environmental activist is anti-business. I always thought
growing up that caring for the environment and public health
was a conservative thing to do. I have later learned it is just
the right thing to do.
We all need to come together on this issue, Republicans,
Democrats, Independents, businesses and communities. We need
government, business, and affected communities to joint as one
for the betterment of the whole, and begin to clean up our
messes.
We should ask no more of ourselves than we ask of our
children. We need to work together to find solutions and learn
what I believe my children and countless other children who
serve our country are teaching us. We must protect, nurture and
defend what we love and cherish the most, our families, our
health, our land, our water and our very environment.
Chair Boxer and Senators here today, I thank you for the
opportunity to share this map with you and be a part of this
presentation, and I do thank you for your tireless efforts to
help make our environment a better place to live.
[The prepared statement of Ms. Brockovich follows:]
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Responses by Erin Brockovich to Additional Questions
from Senator Boxer
Question 1. Ms. Brockovich, you have spoken about people across the
country who have called you asking for help with unexplained diseases
in their communities. You've also put together a map showing where
these communities are located, and have testified that ``this map
demonstrates we need to do a better job of listening and responding to
these communities.''
How do you think the Federal Government could improve its ability
to listen and help the types of people and communities who have reached
out to you asking for help?
Response. As I said in my testimony, listening to the community
when they raise concerns is vital. While I'm sure I'm not the only
person who frustrated Americans are reaching out to, it's not just
about listening. The government must also improve communication so that
the community is involved when decisions are made.
One of the key provisions of S. 76 in this regard is the required
coordination between various Federal agencies including the
Environmental Protection Agency, the Department of Health and Human
Services, the National Institute of Environmental Health Sciences, and
the Agency for Toxic Substances and Disease Registry. All of these
agencies bring different, needed expertise that the community will
benefit from.
I also believe that the Regional Disease Cluster Information and
Response Centers and Teams as well as the Community Disease Cluster
Advisory Committees will help communities be more involved and allow
them to provide invaluable information to government experts.
People across America are crying out for help and S. 76 will help
to not only hear those cries, but to effectively help them respond to
potential disease clusters by bringing in needed expertise while
incorporating and valuing local input.
Question 2. Ms. Brockovich, your testimony emphasizes the
importance of ensuring accountability and transparency when government
agencies investigate potential disease clusters.
What are the main benefits to the people who are stricken with
illness and to other people in their community from increased
transparency and accountability?
Response. The main benefit of increased transparency and
accountability is increased faith that the Federal Government is
listening, investigating and working to solve the issues surrounding
potential disease clusters.
In the Strengthening Protections for Children and Communities from
Disease Clusters Act, the EPA will be required to establish and
regularly update a publicly accessible online data base to provide
communities with important information on investigations, associated
illnesses, and pollutants. Unfortunately, not everyone in a community,
even if they are experiencing health effects, will reach out to
others--or the government; ensuring that key information is publicly
available the government will be able to bring more people into the
process and to positively or negatively identify a disease cluster. By
ensuring transparency both the affected community and the government
agencies will have access to more information, which will help in
identifying and treating disease clusters.
The public information will also allow the community to monitor the
work being done by different entities, which fosters accountability. As
has been said, sunlight is the best disinfectant.
Question 3. Ms. Brockovich, some people have said that Hinkley,
California did not have a disease cluster because the area had no more
cancers than one would normally expect in the community.
How do you respond to that argument?
Response. Unfortunately this is an argument I hear much too often,
usually from Pacific Gas & Electric (PG&E) who were responsible for the
hexavalent chromium pollution and have failed time and again to
effectively clean it up. However, part of the reason that Hinkley did
not have more cancers than one would normally expect is because
authorities are only testing and looking at current residents of
Hinkley. If you believe that your environment is harming you and you
have the means to do so, wouldn't you move? In this age of where people
from different corners of the globe are connected through social media,
the Federal Government should leverage these and other tools to more
effectively track people when they move away from potential disease
cluster sites.
Responses by Erin Brockovich to Additional Questions from Senator
Inhofe
Question 1. Currently the Agency for Toxic Substances and Disease
Registry and the Centers for Disease Control investigate disease
clusters. Please describe the deficiencies in their programs which
makes them unsuitable to do what S. 76 has EPA doing?
Response. Members of Congress, local community groups, and public
health advocates have harshly criticized the Agency for Toxic
Substances and Disease Registry (ATSDR) for failing to protect the
public from toxic exposures, while independent scientists have pointed
to the lack of scientific rigor and integrity in the agency's health
assessments. They argue that ATSDR often seeks ways to avoid linking
local health problems to specific sources of hazardous chemicals rather
than actively trying to identify and prove exposures.\1\
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\1\ Report by Majority Staff of Subcommittee on Investigations and
Oversight, House Committee on Science and Technology, March 10, 2009.
---------------------------------------------------------------------------
S. 76 lays out clear guidelines for conducting investigations,
including a description of roles and responsibilities as well as
Regional Disease Cluster Information Response Teams, which will ensure
that local communities play a more active participatory role in
investigations.
We need more transparency and accountability in the process of
identifying and investigating potential disease clusters. The plan laid
out in S. 76 will require more of both, which will increase the
government's ability to better handle the myriad issues surrounding
disease clusters.
Question 2. Do you believe that S. 76 will allow EPA to take action
to prevent a company from emitting or discharging identified toxic
substances? Should S. 76 provide EPA with additional authority to take
actions to address an identified or potential disease clusters?
Response. I don't believe that S. 76 will allow EPA to take action
to prevent a company from emitting or discharging identified toxic
substances beyond the agency's current authority already codified in
laws like the Safe Drinking Water Act and the Comprehensive
Environmental Response, Compensation, and Liability Act. The
legislation strengthens the Federal Government's ability to identify
and investigate disease clusters as well as better coordinate among
Federal, State, and local agencies and affected communities.
S. 76 is not the appropriate vehicle by which to grant EPA the
additional authority to take such actions. Reform of the Toxic
Substances Control Act, however, would allow the agency to better
address toxic substances that may be associated with disease clusters.
Question 3. Should the primary focus be on cancer clusters and not
other diseases, such as asthma?
Response. The focus should be on disease clusters in general, which
is how S. 76 is laid out. Unfortunately, we are seeing increases in
several diseases including childhood cancer as well as asthma and
autism. Illnesses often have affected the physical, mental and
financial wellbeing of the impacted people and their families. The
agencies pulled together by S. 76 should and will focus on all
potential disease clusters.
Question 4. Would areas for investigation be identified by public
reporting of concerns? By incidence reporting by the medical community?
Do you have any recommendation in this area?
Response. The quick answer is all of the above. As the map I showed
at the hearing and Trevor Schaefer's testimony demonstrated, we can't
just rely on one source of reporting. Trevor's first doctors did not
share the information with the relevant authorities and my map
represents people who felt they had nowhere else to turn. People should
be able to report potential disease clusters through the petition
process outlined in the bill. They should also be confident that if
they share information with their doctors, the doctors will share the
information with the proper authorities.
There need to be various paths of reporting of concerns to ensure
that concern and information about potential disease clusters reaches
the Federal agencies tasked with investigating and identifying them. We
should ensure more reporting not less.
Question 5. EPA currently regulates the emissions of both toxic
substances, and required pollution controls will reduce emissions of
many other chemicals. Are you in favor of requiring additional
reductions, and additional controls, to address potential disease
clusters?
Response. I am in favor of additional reductions and additional
control being part of the potential actions that can be taken by
Federal agencies involved in identifying and investigating disease
clusters. When pollution and illnesses are widespread as they would be
in the case of a disease cluster, immediate action must be taken to
reduce exposures.
While there are laws that regulate emissions, releases and
exposures of toxic chemicals, hazardous substances and other pollution
some of these are too weak to effectively limit exposure to toxic
substances. One example is the Toxic Substances Control Act (TSCA),
which is so weak, EPA was unable to ban asbestos, one of the most
carcinogenic substances on earth. Because of its limited authority
under the law, EPA has required testing for only 200 chemicals and
banned only 5 in the 35 years since TSCA passed. Under current law the
burden rests on EPA to prove a chemical is unsafe (with very little
authority or ability to do so) instead of the manufacturer having the
burden to prove a chemical is safe.
As you know, there have been efforts to reform TSCA in recent years
and one of the core components of that effort is to protect vulnerable
populations. There is little doubt that people impacted by disease
clusters are vulnerable populations and exposure to harmful pollution
must be reduced and controlled.
Question 6. Under S. 76, what do you think would constitute
``clearly'' describing ``the basis for the requested investigation or
action'' when it comes to a petition by a person for investigation?
Response. The bar should be relatively low when it comes to the
basis for the requested investigation. As I pointed out in my
testimony, Americans around the country feel that the government is not
listening to them. That's why they reach out to me in such numbers that
I felt compelled to create the map I presented at the hearing. As
Trevor Schaefer made clear, right now determining whether a cluster
exists is stacked against the community and potential victims. For
those reasons deference should be given to the person filing the
petition.
The Strengthening Protections for Children and Communities from
Disease Clusters Act also builds strong considerations into the
petition process so the agencies aren't forced on wild goose chases
while also allowing them to deny or defer a petition. However, it is
important that the Americans that haven't been heard for too long be
given a voice to alert the Federal Government to potential disease
clusters.
Question 7. The definition of membership on Community Disease
Cluster Advisory Committees shall include ``individuals who are or may
be impacted by a suspected or potential disease cluster, and the
designee of such an individual who may participate with or in the place
of such an individual.'' Is there anyone in the United States that does
not meet that definition? Should attorneys for clients with potential
suits against local companies or manufacturers be included in the
definition of ``designee''?
Response. I disagree that this definition is too broad and that
anyone in the United States meets it. In fact in the legislation, there
is a ban on members of the committee that may have any direct or
indirect conflict of interest, which would probably disqualify not only
attorneys for clients with potential suits against local companies or
manufacturers but also defense attorneys or paid defense expert
witnesses. However, it is important that designees could be included in
these committees, especially if the impacted person is not physically
capable of participating.
The goal is and should be to ensure that the impacted individuals,
State and local government officials and Federal appointees can come
together to share information and data and ensure that all affected
parties are involved.
Senator Boxer. Thank you so much, Ms. Brockovich.
This map is really unbelievable that people called you.
They didn't have another place to go, and you should feel
really proud of your record in the past and that America feels
comfortable in letting you know this. But that is what we are
trying to work on is to make it easier for people to report
these to us and therefore we can then take the whole community
and bring together State, local, community, individuals and get
to the bottom of these disease clusters, some of which are not
related to environment and many of them are.
Dr. Belzer, welcome.
STATEMENT OF RICHARD B. BELZER, PRESIDENT, REGULATORY CHECKBOOK
Mr. Belzer. Thank you very much, Chairman Boxer and Members
present of the committee. I appreciate the opportunity to
testify today. I want to make a friendly correction, Chairman
Boxer, to your opening statement. I, too, am a California
native, so there is a certain imbalance on this panel. I was
raised in Torrance, CA and got my bachelor's and master's
degrees at the University of California at Davis. That is a few
years ago. Subsequently earned a master's and doctorate from
Harvard. I sometimes regret I was not able to move back.
Senator Boxer. Well, that is the thing. We miss you. You
have left us for Virginia and we can't forgive you for that.
[Laughter.]
Mr. Belzer. Thank you so much. My parents sometimes feel
the same way.
My background is as an analyst, an economist, a risk
analyst, and I want to point out that although my 10 years
spent as an economist in the Office of Management and Budget
normally would make people think of sort of a green eyeshade
sort of view of someone like me. I want to point out in
particular that I shepherded through OMB's convoluted review
process EPA's National Human Exposure Assessment Survey
probably almost 20 years ago now. At the time, it was the
biggest attempt to get real world representative data on
environmental exposure. I am very proud to have shepherded it
through. At least 40 papers have been published in peer-
reviewed literature because of this project. I am happy to have
played a small role in that.
With that small introduction, I want to raise a couple of
questions here. My written testimony covers a number of
scientific and technical issues, but I wish to focus on four of
them right now.
First, how is the term disease defined? Without a clear
definition of disease, almost anything could be included within
it. We have experience with this problem. The term adverse
health effect is used hundreds of times in Federal law, but it
is either defined circularly or it is not defined at all. This
creates an number of problems for us in attempting to be
responsive.
S. 76 does not include a definition of disease either. It
uses the term adverse effect, but like existing law, it does
not define it.
Second, how is the term disease cluster defined? A good
scientific definition would be both sensitive and selective.
Sensitivity is needed to ensure that we miss very few real
cases, what statisticians call false negatives. Selectivity is
needed to minimize the number of random cases that are
incorrectly classified as part of a cluster. What statisticians
would call false positives.
Now, false negatives are obviously costly. We don't want to
miss real cases. But false positives are costly, too. They
create significant fear and anxiety. They may lead to the
closure of parks, schools and drinking water wells. They
depress the market value of people's homes.
This also creates a serious problem for scientists who are
investigating or would be investigating petitions alleging a
disease cluster. The less sensitive the definition, the greater
will be the proportion of investigations that come up dry
because there isn't anything defined. Now, when scientists come
up dry, people often are more angry than relieved. Their trust
in government is damaged sometimes beyond repair.
The conventional definition, the definition in S. 76, has
really good sensitivity, but really poor selectivity. It is
very unlikely to miss a real disease cluster. That means it has
a low rate of false negatives. However, it is very likely to
misclassify a lot of random cases as disease clusters. That
means it has a high rate of false positives.
In my written testimony, I show how the conventional
definition results in the majority of random cases of disease
getting misclassified as disease clusters. In my example, 27
percent of fixed geographical zones have greater than expected
numbers of cases, and so they would be legislatively deemed to
be disease clusters.
If my data were randomly generated, that means all of my
data were false positives. This does not help those who belong
to a bona fide disease cluster since ample resources will be
spent searching for environmental linkages that do not exist.
That takes resources away from trying to understand real
disease clusters.
My third concern, how is the term potential cause of a
disease cluster defined? The definition in S. 76 is in some
respects narrow and in other respects very broad. It is narrow
because it focuses on anything subject to regulation by EPA. It
is broad because it demands no scientific evidence. A chemical
is a potential cause just by being present. No evidence is
required that the chemical causes the disease of interest. No
evidence is required that any exposure to the chemical actually
occurred. No evidence is required of a dose-response
relationship.
In short, the problem is the definition does not follow the
scientific risk assessment model.
Finally, I am worried about the possibility of
subordinating science to law and politics. When Congress
attempts to legislate science, science is compromised. That
science would be compromised is evident, especially to me, in
the way EPA would be directed by its risk assessments in a
health-protective way. This is not science and it damages the
credibility and integrity of risk assessments. Scientists
should never be told what conclusion to reach and invited to
conduct research in order to support it.
To be credible, risk must be estimated objectively. This is
a core scientific value and responsible scientists will not
participate in a system in which core incentive values are
compromised.
Thank you again for the opportunity to testify.
[The prepared statement of Mr. Belzer follows:]
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Responses by Richard B. Belzer to Additional Questions from
Senator Inhofe
Question 1. Would S. 76 give the EPA Administrator limitless
discretionary authority over what could be labeled a ``disease
cluster'' and what the ``potential causes of a disease cluster'' could
be?
Response. S. 76 would establish by statute an exceptionally broad
definition of ``disease cluster'' and give the EPA Administrator
unlimited discretion to expand it. The proposed statutory definition
has no scientific content, and the Administrator would not be required
to base any expansion of the definition on science.
In contrast, S. 76 would narrowly define ``potential cause of a
disease cluster'' based on EPA's portfolio of legal authorities and
give the EPA Administrator considerable discretion to expand the depth
of the definition, if not its breadth. The bill would give her the
authority to include environmental pollutants and toxic substances if
they appear ``in any other form,'' such as in occupational settings,
consumer products, and food. The proposed statutory definition has no
scientific content, and the Administrator would not be required to base
any expansion of the definition on science.
In circumstances where one of these statutory definitions yielded
foolish results, the Administrator would have no authority to waive it.
The statutory definition of ``disease cluster'' would be
exceptionally broad and nonscientific. Sec. 5(4)(A) uses a highly
inclusive statistical rule: the occurrence of a ``greater-than-
expected'' number of cases within (a) any group of individuals, (b) any
geographic area, or (c) any period of time, would be deemed by law to
be a ``disease cluster.'' A single case could constitute a ``cluster''
if the expected number in any group of individuals, geographic area, or
period of time is less than one. Moreover, a greater-than-expected
number of cases is a common phenomenon. The modifier ``any'' permits
individuals to be grouped an infinite number of ways. With mildly
creative interpretation, no case of disease would escape inclusion
within at least one statutorily defined ``disease cluster.''
The EPA Administrator would have no discretion to overrule the
statutory definition of ``disease cluster.'' Nothing in S. 76 allows
the EPA Administrator to determine that cases meeting the definition in
subparagraph (A) do not merit designation as a ``disease cluster,''
such as for scientific reasons. She could not use new scientific
knowledge, no matter how persuasive, to withdraw or rescind a
statutorily-defined designation. For example, even proof beyond a
reasonable doubt that an observed greater-than-average number of cases
is a spurious cluster would be insufficient to overcome the statutory
designation because the statutory definition allows no exemptions.
The EPA Administrator would have unlimited discretion to expand the
definition of ``disease cluster.'' Sec. 5(4)(B) would allow the EPA
Administrator to establish an unlimited number of supplementary
criteria defining ``disease cluster.'' Cases need only ``meet[] such
other criteria, as the Administrator . . . may determine.'' She also
could establish a lower numeric threshold than ``greater-than-
expected.'' Incidence need only to be as great as ``such number of
cases . . . as the Administrator . . . may determine.'' To be concrete,
she would be permitted to endorse a famous folk superstition and decide
that any collection of three events constitutes a ``disease cluster.''
``Potential causes of a disease cluster'' would be limited to what
EPA regulates, but only in part. The definition in Sec. 5(7)(A)-(G) is
limited to pollutants, chemicals, and substances regulated by EPA under
existing statutory authorities. Thus, ``disease clusters'' are presumed
to have only environmental origins, and among environmental origins,
only those which are regulated by EPA matter.
While the domain is limited to pollutants and substances that EPA
regulates, this is true only in part. The catch-all provision in clause
(H) includes any other form of environmental pollution or toxic
substance that is a known or potential cause of an adverse health
effect, including a developmental, reproductive, neurotoxic, or
carcinogenic effect (emphasis added).
The boundaries of this text are difficult to plot, but some idea of
its unstated breadth can be seen by walking through a couple examples.
Benzene is clearly a ``potential cause'' because it is a regulated
pollutant in air, water, and soil, and a regulated constituent in motor
gasoline. Clause (H) would enable EPA to expand the domain of
``potential cause'' to include side-stream and second-hand tobacco
smoke, neither of which it otherwise regulates, because both contain
benzene in ``[an]other ``form.'' Similarly, EPA could decide that fine
Bordeaux is a ``potential cause of a disease cluster.'' It contains
ethanol in ``[an]other form,'' which EPA regulates under the Clean Air
Act. Charting the boundaries of this text ex ante may be impossible
because the array of ``other forms'' cannot be measured. EPA regulates
formaldehyde, and formaldehyde is present at part-per-billion levels in
human breath. Could people be deemed ``potential causes of a disease
cluster'' because they exhale? Much like the Clean Air Act defines air
pollutant capaciously (``any air pollution agent or combination of such
agents, including any physical, chemical, biological, radioactive
(including source material, special nuclear material, and byproduct
material) substance or matter which is emitted into or otherwise enters
the ambient air'' [42 U.S.C. Sec. 7602(g)]), S. 76 specifies no limit
to the potential breadth of the ``any other form'' provision. The only
things clearly excluded from the definition are the three most
important actual causes of disease--genetics, behavior, and aging. EPA-
regulated substances may be involved at cellular levels, but they are
exempt because genetics, behavior, and aging are not environmental
phenomena.
One of the more troubling aspects of the proposed definition is the
adjective ``potential'' preceding ``cause.'' As I noted in my
testimony, only technical feasibility could logically preclude
something from being a ``potential'' cause. Even technical
infeasibility is not necessarily a bar under some established
regulatory definitions of adverse effect. For example, EPA sometimes
considers exposures below the threshold for biological effect to be
nonetheless adverse because they may reduce a person's ability to
withstand challenges from otherwise non-adverse exposures to other
substances. (In this model, everything is adverse because it contains
potential risk.)
Question 2. Would S. 76 grant the EPA Administrator an unlimited
scope of delegable authorities to Regional Response Centers and Teams?
Response. S. 76 would require the EPA Administrator to delegate
certain authorities to Regional Response Centers and Teams. It also
would allow her considerable discretion to delegate other authorities.
Some authorities could not be delegated. Credibly ascertaining the
scope of Response Team authority requires resolving a pair of key
uncertainties--what is meant by the mandatory delegated authorities to
(1) ``investigate suspected or potential disease clusters,
environmental pollutants or toxic substances associated with those
disease clusters, and potential causes of disease clusters'' and (2)
``address the potential causes of disease clusters.''
The EPA Administrator would be required to delegate certain
authorities. Sec. 7(b)(3)(B) would require the EPA Administrator to
delegate to Regional Response Centers and Teams authorities that range
from promotional (``making guidelines, protocols, data, and other
relevant information and expertise available to State and local
officials and the public'') to investigative (``investigating suspected
or potential disease clusters, environmental pollutants or toxic
substances associated with those disease clusters, and potential causes
of disease clusters'') to remedial (``addressing the potential causes
of disease clusters'').
The scope of these mandatory authorities, particularly the
investigative and remedial, is not clear. With respect to the
investigative authorities, for example, S. 76 would not explicitly
authorize Response Teams to seek subpoenas, issue unilateral orders, or
enter private property and collect data without permission. S. 76 also
would not explicitly authorize Response Teams to require that persons
suspected of being part of a disease cluster involuntarily provide
biological or other data. On the other hand, the bill does not forbid
Response Teams from undertaking any of these activities, and a
plausible case could be made that they ``are consistent with achieving
the goals of the Act.''
Similarly, S. 76 is unclear concerning the scope of the Response
Teams' mandatory remedial authorities. A general principle of statutory
construction is to assume that a text has practical meaning. Without
any authority at all, however, the requirement to ``address[] the
potential causes of disease clusters'' would be an empty one. Thus, the
questions unresolved by the text of the bill are (1) what does it mean
to ``address'' a ''potential cause of a disease cluster''? and (2) what
actions would exceed Response Teams' delegated authority?
It should be noted that the definition of a ``potential cause of a
disease cluster'' implies the identification of a person, firm, or
other entity that is a source of a regulated pollutant, chemical, or
substance (though ``source of a potential cause of a disease cluster''
is not defined in the bill). These identifications require no
particular scientific evidence, as S. 76 includes no scientific
standards for causation. Moreover, the data base EPA would be directed
to establish and maintain would not be constrained by scientific
standards. It would include every phenomenon the EPA Administrator
deemed to be a ``disease,'' and every legislatively or administratively
deemed ``disease cluster'' and ``potential cause of a disease
cluster.''
The EPA Administrator would not be able to delegate certain S. 76
authorities to Response Teams. Several new authorities could not be
delegated, including (a) the authority to establish additional criteria
for defining ``disease clusters''; (b) the authority to ``establish
criteria for the consideration of petitions'' seeking an investigation
of a potential disease cluster; (c) the responsibility for acting on
such petitions; and (d) the responsibility of compiling and regularly
updating the data-base of disease cluster reports and related
information.
S. 76 would authorize the EPA Administrator to direct Response
Teams to take investigative and remedial actions based on her own
judgment (``that the Administrator determines should be investigated or
addressed'') or because she is dissatisfied, for whatever reason, with
the efforts of State and local governments (``that the Administrator
determines State and local officials need assistance in investigating
or addressing''). Thus, S. 76 would authorize the EPA Administrator to
overrule the judgment of State and local government officials with
respect to matters that, with rare exception, are not Federal in scale
or scope and for which Federal authorities do not have presumptively
superior knowledge or insight.
The EPA Administrator may be able to delegate certain S. 76
authorities to Response Teams. Sec. 7(b)(3)(A) directs the EPA
Administrator to ``establish the scope of activities for Response Teams
to ensure that the activities are consistent with achieving the goals
of the Act.'' Nothing in the bill would prohibit her from re-delegating
authorities delegated to her by other statutes. For example, the EPA
Administrator has certain authorities to seek subpoenas, issue
unilateral orders, and enter property to collect data without
permission. If she determined that these authorities were needed to
``ensure that the activities [of Response Teams] are consistent with
achieving the goals of the Act'' and re-delegation was not otherwise
prohibited, she might be able to authorize Response Teams to undertake
them.
It appears that the EPA Administrator could not delegate to
Response Teams the authority to decide on their own which
investigations to undertake. Among the Response Teams' mandatory
directives is to ``respond[] rapidly to a petition'' by
``investigat[ing] suspected or potential disease clusters . . .'' and
``address[ing] the potential causes of disease clusters . . .''
However, Response Teams do not appear to gain any explicit authority to
commence these activities absent prior authorization by the
Administrator. Still, nothing in S. 76 forbids Response Teams from
undertaking these activities prior to or in anticipation of such a
decision, nor does the text forbid the Administrator from delegating
the authority to conduct provisional investigations prior to making a
decision whether to investigate formally.
The EPA Administrator also might be able to delegate to Response
Teams the authority to review petitions seeking Federal investigation.
Because Response Teams would be incentivized to maximize false
positives, they would be conflicted in conducting such reviews. S. 76
forbids direct or indirect conflicts of interest in the selection of
Response Team members (Sec. 7(b)(1)(B)), in the selection of Community
Disease Cluster Advisory Committee members (Sec. 7(c)(3)), and in the
procedures for peer review of guidelines for environmental
investigations of disease clusters (Sec. 6(b)(5)), though what
constitutes a direct or indirect conflict of interest is not stated.
But there is no prohibition against a Response Team reviewing a
petition on which it is demonstrably conflicted. This could happen, for
example, if one or more Team members had assisted in preparing the
petition, which they are implicitly encouraged to do via the provision
of technical assistance (see Sec. Sec. 6(B)(3)(iv) and 7(c)(4)).
Question 3. In your opinion, are CDC and NIEHS the more appropriate
agencies to deal with disease clusters than EPA? If this work is not
properly being done by those organizations, wouldn't it be more
appropriate to work on any deficiencies within their framework rather
than shift so much authority to EPA?
Response. I regret that I cannot comment on which agency would be
``more appropriate'' to define and investigate potential disease
clusters. Such a judgment lies beyond my technical expertise in risk
analysis. What I can say with near certainty, however, is that S. 76
would fail to achieve its stated purposes irrespective of whether its
authorities were delegated to EPA, CDC, NIEHS, or another agency.
Failure is assured because S. 76 would subordinate science to
politics, and thereby undermine the scientific integrity of every
disease cluster investigation. Critical terms defined in S. 76 lack
scientific merit, and the absence of a scientific definition for
``disease''--even though everything in the bill hinges on it--likely
would result in science becoming functionally irrelevant to the program
from the outset.
If there are scientific deficiencies in existing CDC and NIEHS
programs, they have not been identified. In my testimony, I asked: Is
there a government failure for which S. 76 is a reasonable solution?
The question was not rhetorical; answering it is an essential
prerequisite for rational policymaking in this area.
S. 76 appears to be founded on several crucial assumptions: (1)
existing programs operated by CDC and NIEHS have failed scientifically;
(2) these institutional failures cannot be remedied, but their programs
should not be reduced or terminated; (3) existing CDC and NIEHS
programs would be enhanced if a large new program were established
under EPA's auspices; and (4) a large new program operated by EPA would
likely succeed scientifically where existing programs operated by CDC
and NIEHS have not.
I am aware of no credible evidence supporting any of these
assumptions. In addition, no credible evidence was presented at the
March 29 hearing. Rather, among proponents of the bill, there appears
to be a desire to abandon science because it has not succeeded in
reaching what they regard as obvious conclusions.
I encouraged Congress to take a step back, and first make a
persuasive case of government failure:
Before agreeing to such a radical change, Congress might want to
investigate the extent to which CDC and NIEHS have failed to address
disease clusters in a scientifically credible manner.
I stand by that advice.
Question 4. In your testimony you mention that under S. 76,
``substantial public and private resources will be misallocated based
on political rather than scientific concerns.'' Do you think that if
this or similar legislation were passed it could actually harm the
ability of the Federal Government to better understand and address
disease clusters due to this misallocation of resources?
Response. If S. 76 or a similar bill were enacted into law, the
ability of the Federal Government to better understand and address bona
fide disease clusters cannot escape being severely damaged, if not
ruined. This damage would result because resources would be reallocated
from investigating whether scientifically plausible phenomena are
actually disease clusters to hunting down culprits for legislatively
deemed disease clusters. The principle victims would be those who
belong to real disease clusters. Few resources would be available to
investigate their cases because the vast majority of effort would be
spent pursuing wild goose chases. S. 76 also would require EPA to
produce intentionally misleading risk assessments, thereby destroying
the Agency's scientific credibility.
S. 76 would ensure that public and private resources are allocated
based on political rather than scientific considerations. The bill
invites mischief by lacking either a scientific definition of
``disease'' or a requirement that EPA define the term scientifically.
EPA currently defines as ``adverse effects'' an increasing wide swath
of phenomena, including things that are reversible, transient, or even
unobservable. Thus, the EPA Administrator should be expected to define
``disease'' very broadly. Whatever definition she promulgated, it would
be virtually impossible to challenge.
S. 76 would require scarce public resources to be diverted to wild
good chases. Government epidemiologists would be so overwhelmed
investigating statutory disease clusters that they would not be able to
focus on investigating those clusters with the greatest likelihood of
being scientifically genuine. Indeed, S. 76 would define the term
``disease cluster'' in a way that maximizes such ``false positives.''
Because the apparent success of each Response Center and Team would
depend on the number of ``disease clusters'' identified and purported
to be associated with one or more ``potential causes,'' each Center and
Team would be highly motivated to identify as many false positives as
possible. Because politics would govern every material aspect of this
new program, Response Centers and Teams inevitably would become
rentseeking political actors rather than disinterested scientific
investigators.
Fostering wild goose chases misallocates private resources.
Entities regulated by EPA because of a legal connection to an
enumerated pollutant or substance would be implicitly targeted as a
source of a ``potential cause of a disease cluster.'' (Indeed, it seems
likely that the definition of a ``potential cause'' would morph from
pollutants or substances enumerated Sec. 5(7) to a ``potential source
of a potential cause.'') For every wild goose chase taken on by
government epidemiologists or a Response Team, it would be imprudent
for a ``potential source of a potential cause'' not to attempt to
refute such linkages. That is, they would have little choice but to
reallocate scarce resources from productive purposes. Though it isn't
one of the stated purposes in Sec. 3, it is nevertheless likely that
investigations would unleash considerable personal injury litigation of
inherently dubious merit.
S. 76 likely would destroy the credibility of EPA risk assessment.
Perhaps the most important place where S. 76 would lead to egregious
public and private resource misallocation is in Sec. Sec. 6(c)(4) and
7(b)(3)(C)(iii). These provisions, which appear innocuous on their
face, would direct EPA to intentionally exaggerate the alleged
relationship between a ``disease cluster'' and a ``potential cause,''
and by extension, to a ``potential source of a potential cause.'' If
EPA were directed to produce and disseminate purposefully biased risk
assessments for this program, the scientific integrity of all future
Agency risk assessment would be suspect.
At the end of my testimony, I mentioned that my data base of 100
disease cases was produced by the random number generator in Microsoft
Excel. By definition, random cases of disease cannot be part of a
``disease cluster.'' Thus, the EPA Administrator would be statutorily
required to treat at least 63 of my 100 random cases as belonging to
one of at least 27 imaginary disease clusters. All resources devoted to
identify systemic ``causes'' for imaginary disease clusters would be
wasted. As I testified:
Untold resources would be devoted trying to tease out environmental
linkages that do not exist. The people most harmed by this will be
those who really are members of a bona fide disease cluster.
Identifying disease clusters is a scientifically complex task. S.
94 would solve the problem of scientific complexity, but it would do so
by removing science from the task.
Senator Boxer. Thank you, and I look forward to responding
to your critique.
Dr. Gina Solomon, we welcome you, senior scientist at the
NRDC.
STATEMENT OF GINA SOLOMON, SENIOR SCIENTIST, NATURAL RESOURCES
DEFENSE COUNCIL
Dr. Solomon. Thank you, Chairman Boxer and Members of the
committee, Senator Crapo.
Good morning. My name is Gina Solomon. I am a practicing
physician. I am also a senior scientist at the Natural
Resources Defense Council, and I am the director of the
Occupational and Environmental Medicine Residency Program at
the University of California at San Francisco.
Most health professionals at some point in their career
encounter a disease cluster. A disease cluster is a mysterious
excess of one or more illnesses such as cancers, birth defects
or neurological disease in a particular workplace or particular
community over a period of time.
These disease clusters are frightening for communities and
often frustrating for scientists because at least in the past,
there were limited tools for understanding and solving them.
But disease clusters also hold the potential, especially
with the new scientific tools of today and that are emerging as
we move forward, these disease clusters may unlock some of the
mysteries of chronic disease, including birth defects and
cancer.
When I was a clinical fellow at Harvard in the mid-1990's,
I learned about a cancer cluster in nearby Woburn, MA. Twelve
children in that very small town got leukemia over a period of
just a few years and most of them lived on just one street in a
certain section of town.
That cluster, like many, was not discovered by a State or
Federal Agency or scientists. It was actually discovered by
community members who recognized each other when they were
sitting waiting in the waiting room at the Dana-Farber Cancer
Institute. Ultimately, this cluster was confirmed by scientists
and it provided a very key clue because it was the first time
that the chemical trichloroethylene or TCE was linked with
cancer in humans. An abundance of science since that time has
multiply confirmed that link. So that cluster provided a clue
that helped science move forward.
This Senate Committee held a hearing, a field hearing in
April 2001 in the town of Fallon, NV where within 2 years 11
children were diagnosed with leukemia. Scientists published a
paper calculating that a cluster of this magnitude would occur
in the United States by pure chance about once every 22,000
years. Like Woburn, that cluster in Fallon provided clues.
Testing in the community revealed that almost 80 percent of
community members had urinary tungsten levels above the 90th
percentile of people nationwide. Tungsten was not previously
thought to be carcinogenic, but it had never really been
studied.
This same metal then showed up at high levels in Sierra
Vista, AZ, another community affected by a childhood leukemia
cluster. Those two findings triggered a much-needed study by
the National Toxicology Program which is ongoing today and
which may advance the science and help protect public health.
Although it is really difficult to conclusively prove what
caused any specific disease cluster, what I want to say today
to you is that we can gather invaluable clues and hints from
these tragic events, and those can then help us solve the
mystery of chronic disease.
Historically, disease clusters have revealed the link
between cancer and asbestos, between peripheral neuropathy and
hexane, between testicular toxicity and male infertility and
DBCP, and between liver cancers and vinyl chloride, just to
name a few examples.
All of these chemicals are now well known to be dangerous
to humans and one of them, the pesticide DBCP, has actually
been banned. All of the other chemicals I mentioned fall under
the purview of the Toxic Substances Control Act and they are
actually still in widespread use today.
My colleagues and I just released an issue paper
documenting 42 disease clusters in 13 States that have been
confirmed by investigations, by State or Federal
investigations. This issue paper is attached to my written
testimony. We found examples such as brain cancer in children
and adults at the Acreage in West Palm Beach, FL, which was
brought to the attention of this very committee by Senator Bill
Nelson a year ago; birth defects in Kettleman City, CA,
including 20 babies born over less than 2 years with birth
defects and four children with birth defects so severe that
they have since died in a town of only 1,500 people.
There are numerous other examples, including the well-known
cluster of male breast cancer, as well as childhood cancer and
birth defects, at Camp Lejeune, NC, where more than 60 Marines
who lived on that base have been diagnosed with male breast
cancer. This is an extraordinary and alarming finding. It is
almost impossible that that could occur by chance alone and it
deserves urgent attention.
Some of the much-needed tools to solve disease clusters are
found in S. 76, the legislation known to many as Trevor's Law.
This legislation would direct and fund Federal Agencies to
swiftly assist State and local officials to investigate
community concerns about disease clusters and their causes, but
it would also create consistent science-based guidelines for a
systematic and team approach to investigating disease clusters.
These guidelines would be developed in collaboration
between EPA, the Centers for Disease Control, the National
Institute of Environmental Health Sciences, and the National
Institutes of Health. They would address these issues of
statistical significance that are often so difficult in disease
clusters.
This bill would also set up local advisory committees to
improve outreach and involvement of community members. This is
essential to build trust within the community, but also to
learn from the community because it is often community members
who have pointed out the critical clues to unlocking these
clusters.
The other thing that S. 76 would do is encourage deployment
of powerful new scientific tools like toxicogenomics, toxicity
pathway screening, and even analytical chemistry techniques
that can screen for hundreds or even thousands of chemicals in
people.
So I am thinking today of the residents of all of the many
dozens of communities across the country that are affected by
confirmed disease clusters and the hundreds of communities
where residents are self-identifying clusters and looking for
help. These people have suffered through illness and
uncertainty, through hope and loss, and they fought for
answers, and in most cases have not received them.
But it is not too late for these communities and others
like them. We now have the scientific tools and there is an
opportunity to improve and systematize our approach to disease
clusters so these communities get the support they need and the
answers they seek.
Thank you.
[The prepared statement of Dr. Solomon follows:]
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Responses by Dr. Gina M. Solomon, to Additional Questions from
Senator Boxer
Question 1. Dr. Solomon, your organization, the Natural Resources
Defense Council and the National Disease Cluster Alliance have issued a
report on 42 disease clusters in 13 States.
Could you please describe why you put this report together and what
the report shows about our nation's capacity to investigate and address
disease clusters?
Response. Chronic disease is responsible for four out of five
deaths in the U.S. today, and the suffering of 133 million people per
year. Asthma, developmental diseases such as birth defects or
neurobehavioral disorders, degenerative neurological diseases such as
Parkinson's and Alzheimer's, diabetes, and cancer are all chronic
diseases. According to the U.S. Centers for Disease Control and
Prevention (CDC), almost half of all Americans are living with chronic
disease, which now accounts for 70 percent of deaths and 75 percent of
U.S. health care costs. \1\ Many chronic diseases are on the rise, and
many are preventable.
---------------------------------------------------------------------------
\1\ http://www.cdc.gov/nccdphp/publications/index.htm
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There is also increasing evidence that many of these illnesses may
be linked to exposures in our environment. There is an urgent need for
information that may help to uncover the causes of this epidemic of
chronic disease. Disease clusters may hold clues to this puzzle.
Historically, some disease cluster investigations have helped to reveal
important causes of cancer and other diseases. Yet many major disease
clusters exist in the United States that are never fully investigated.
The Natural Resources Defense Council (NRDC) and the National
Disease Cluster Alliance (NDCA) researched and wrote the report
entitled ``Health Alert: Disease Clusters Spotlight the Need to Protect
People from Toxic Chemicals'' to demonstrate the widespread presence of
disease clusters around the country, and the fact that the causes of
most of these clusters are still unknown--often because they have not
been fully investigated. The report shows that there are significant
improvements needed to our nation's capacity to investigate and address
disease clusters. Improvements in our responses to disease clusters may
help to uncover some important causes of chronic diseases such as
cancer and autism.
Question 2. Dr. Solomon, you have mentioned your time as a Clinical
Fellow at Harvard when a cancer cluster was discovered in Woburn,
Massachusetts. Can you go into that example in more detail and describe
what it tells you about the adequacy of agency efforts to track and
investigate disease clusters?
Response. When I was a Clinical Fellow at Harvard in the mid-
1990's, I learned of a major investigation into a childhood leukemia
cluster in Woburn, Massachusetts. This cluster was quite dramatic--12
children with acute leukemia in one neighborhood of a small town over
just a few years_statistically speaking, it is almost impossible for
this to have happened by chance. We might hope that the State cancer
registry would have identified this cluster of childhood leukemia and
linked it to contamination of the water supply.
Unfortunately that was not the case. This cancer cluster was
discovered by mothers sitting with their children in the waiting room
at the Dana Farber Cancer Center and recognizing other families from
their neighborhood. Only later was it confirmed by scientists at
Harvard and by the State of Massachusetts. The Woburn case reveals the
gaps in the State and Federal monitoring systems for disease clusters.
Ultimately, in this case, a fairly thorough investigation was done, but
it took a lot of action by the local community to get attention to
their very real problem.
Question 3. Dr. Solomon, can you describe some of the current
difficulties of investigating disease clusters and whether you think
that S. 76, the ``Strengthening Protections for Children and
Communities from Disease Clusters Act'' would help to address some of
these difficulties?
Response. There are currently major difficulties investigating
disease clusters in three main ways:
(1) There is no system for reporting, tracking, and prioritizing
disease clusters for investigation, so communities don't know where to
go for help, and agencies refer community complaints around like hot
potatoes.
(2) There is no established process or guidelines for investigating
disease clusters in a systematic way, so resource-strapped county or
State health departments are often struggling to conduct investigations
without instructions or Federal support.
(3) Communities are often not adequately involved in the
investigation, and don't feel like their voices are heard during the
process. So when an investigation is negative or inconclusive, the
community often does not trust the result. Early and consistent
involvement of community members in the study team is an established
benefit in research studies for many reasons. In case after case, the
clues to help solve these cluster mysteries have resided in the
knowledge and experience of the affected communities.
S. 76, the ``Strengthening Protections for Children and Communities
from Disease Clusters Act'', would help address these key problems by
mandating the creation of a set of guidelines for cluster
investigations will help to assure that communities that truly need
assistance will get the attention they need, and will help to focus the
Federal efforts where they will be most useful. S. 76 would also help
improve coordination between agencies. To date, cluster investigations
have frequently been conducted by county or State health departments
with limited assistance; or on rare occasions by the Agency for Toxic
Substances and Disease Registry (ATSDR), which has limited expertise in
environmental monitoring. Bringing the EPA into the collaboration will
be important to allow all areas of expertise to be brought to bear on
the problem. Finally, S. 76 will bring community resources into these
investigations in a more formal way through the creation of formal
Community Advisory Committees, which will be critical to gathering
better information and to better communication and resolution of these
difficult problems.
Question 4. Dr. Solomon, your testimony describes a scientific
article in the New England Journal of Medicine that examined the
potential impact of genetics versus environmental health factors in
disease. Could you please describe this study's finding, particularly
as it relates to the importance of creating systems to account for and
analyze environmental health threats in communities where people are
exposed to multiple sources of pollution?
Response. A study of nearly 45,000 twins published in the New
England Journal of Medicine evaluated the relative importance of
genetic and environmental factors in cancer. \2\ If the cancers were
primarily genetic, identical twins (which share the same genome) would
have more similar cancer patterns than fraternal twins (which only
share the genetics of any siblings). The bottom line of this important
study was that the vast majority of cancers are environmental rather
than genetic. Statistically significant genetic effects were only seen
for three cancers--prostate, colorectal, and breast. In the case of
breast cancer, less than one-third of the risk was due to inherited
factors (potential range 4-41 percent); that means that about 70
percent of the remaining risk of breast cancer is due to environmental
factors. For other cancers, the environmental component was even
larger. The same principle is true for most other diseases, where
environment is turning out to be more important than genetics. As a
result of studies like this, the scientific consensus has gradually
shifted to the position that most diseases are not just caused by
genetics, but rather by a combination of genetic and environmental
factors.
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\2\ Lichtenstein P, Holm NV, Verkasalo PK, Iliadou A, Kaprio J,
Koskenvuo M, Pukkala E, Skytthe A, Hemminki K. Environmental and
heritable factors in the causation of cancer-analyses of cohorts of
twins from Sweden, Denmark, and Finland. N Engl J Med. 2000 Jul
13;343(2):78-85.
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However, it's very difficult for scientists to discern exactly what
percent of cancers, birth defects, or neurological disorders are due to
environmental factors. That's because there's a lot of work that still
needs to be done to identify the list of specific environmental causes
of cancer that that add up to the 70 percent or more from the New
England Journal of Medicine. Some of these factors are well-known (such
as cigarette smoke), others are partially understood (such as the lists
of carcinogens that occur naturally or that are in manmade substances),
and others have yet to be discovered. In addition, because of the
interactions between chemicals, as well as between chemicals and genes,
the sum of causes will add up to more than 100 percent. \3\ The big
problem is that the rates of some cancers--including childhood
cancers--and other diseases are rising, so we don't have the luxury of
a lot of time. People are getting sick and suffering, so we need to
move quickly and use whatever clues we can to understand what's going
on. One of these clues is disease clusters.
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\3\ Clapp RW, Howe GK, Jacobs M. Environmental and Occupational
Causes of Cancer Re-visited. Journal of Public Health Policy (2006) 27,
61-76.
Question 5. Dr. Solomon, can you please describe whether you
believe the creation of a tracking system that links disease and
pollution sources may benefit public health protections?
Response. I believe that the creation and expansion of a tracking
system that links disease and pollution sources will benefit public
health. Environmental public health tracking is the ongoing collection,
integration, analysis, and interpretation of data about environmental
hazards, human exposure, and health effects. In September 2000, the Pew
Environmental Health Commission issued the report ``America's
Environmental Health Gap: Why the Country Needs a Nationwide Health
Tracking Network.'' \4\ The report, which stated that the existing
environmental health system is neither adequate nor well organized,
recommended the creation of a ``Nationwide Health Tracking Network for
disease and exposures.'' In fiscal year 2002, Congress provided CDC
with initial funding to begin developing a nationwide environmental
public health tracking network and to develop capacity in environmental
health within State and local health departments.
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\4\ http://healthyamericans.org/reports/files/healthgap.pdf.
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The CDC National Environmental Public Health Tracking Program has
done impressive work with a very small budget, but there are still
significant remaining gaps. In particular, the Tracking Program is not
designed to discover, or to investigate, disease clusters. So there is
a need for a program to provide that information. Tracking diseases
such as birth defects, cancer, asthma, autism, and Parkinson's disease
is critical to discerning patterns and ultimately to solving many of
the mysteries of these diseases. Tracking systems exist in some States,
for some of these diseases, but they are fragmented and do not cover
all chronic diseases of importance. That's why improved tracking is
needed to help protect public health.
______
Responses by Dr. Gina M. Solomon to Additional Questions from
Senator Inhofe
Question 1. Currently the Agency for Toxics Substances and Disease
Registry and the Centers for Disease Control investigate disease
clusters. Please describe the deficiencies in their programs which
makes them unsuitable to do what S. 76 has EPA doing?
Response. The Agency for Toxic Substances and Disease Registry
(ATSDR) is the part of the Centers for Disease Control and Prevention
(CDC) that--in theory--is charged with investigating disease clusters.
When my research team began investigating disease clusters and
compiling the information for our report, we started by contacting
ATSDR, assuming that they could provide us with information about
disease clusters in all 50 States. In response to our inquiries, ATSDR
responded that: (1) Their normal policy is not to investigate disease
clusters, and they refer any such inquiries to State health
departments; (2) they do not keep any records of reported disease
clusters, or even of confirmed disease clusters, and (3) they do not
have any established guidelines for investigating disease clusters.
It was disturbing to discover that the Federal agency that was
widely believed to be responsible for disease cluster investigations
does not appear to view this as a part of its mission, and does not
establish guidelines or keep records. In fact, ATSDR does not have any
statutory obligations to do any of these things with regard to disease
clusters. These deficiencies in ATSDR's program make it essential for a
Federal agency to take the lead in investigating disease clusters. S.
76 places that responsibility on EPA.
Question 2. Do you believe that S. 76 will allow EPA to take action
to prevent a company from emitting or discharging identified toxic
substances? Should S. 76 provide EPA with additional authority to take
actions to address an identified or potential disease cluster?
Response. My understanding of S. 76 is that it does not alter EPA's
existing regulatory authorities. As such, it would not affect EPA's
existing ability to take action to prevent a company from emitting or
discharging identified toxic substances. Instead, this legislation
would authorize EPA to investigate potential disease clusters and
gather information about them. Any action on emissions or discharges
would need to be done using other regulatory authorities.
In my opinion, S. 76 is designed to gather information about
identified or potential disease clusters and help integrate the
activities of EPA and other Federal agencies (and assist State and
local authorities) when investigating potential disease clusters. An
integrated, coordinated effort would likely make such investigations
more effective, efficient, transparent, and accountable. I don't think
additional regulatory authority needs to be added to S. 76 in order to
make it a valuable law that will help identify and address potential
disease clusters.
Question 3. Should the primary focus be on cancer clusters and not
other diseases, such as asthma?
Response. Our report on disease clusters in 13 States discovered
confirmed clusters of a variety of diseases, including several types of
cancer, autism, polycythemia vera, various types of birth defects,
multiple sclerosis, and amyotrophic lateral sclerosis (Lou Gehrig's
Disease). The point of investigating disease clusters is to learn more
about the causes of diseases for which the causes are poorly
understood. As such, it would generally be less fruitful to investigate
high rates of asthma--an extremely common disease that is best studied
in other ways and for which numerous environmental causes are well-
established. In my view, however, it would be unduly narrow to focus
exclusively on cancer clusters. A cluster investigation of the birth
defect Spina Bifida in Texas helped to uncover the important role of
folate in preventing that disease; a cluster investigation of male
infertility in Southern California discovered the severe testicular
toxicity caused by the pesticide dibromochloropropane (DBCP). When
there is an unusually high rate of a rare disease in a specific
geographic area over a certain time period, it is a signal of the need
for scientific investigation, and it can be an important clue that
helps to uncover the causes of serious diseases.
Question 4. Would areas for investigation be identified by public
reporting of concerns? By incidence reporting by the medical community?
Do you have any recommendations in this area?
Response. S. 76 calls for the establishment of a ``systematic,
integrated approach that uses the best available science'', and
requires the establishment of clear guidelines for ``disease cluster
identification and reporting protocols''. Such guidelines would create
a process for identifying areas for investigation through a clearly
delineated process involving a series of steps to identify and
prioritize sites.
My recommendation might be as follows: First, potential disease
cluster sites could be identified via various routes, including reports
from local physicians or health officers, petitions from community
groups, letters from elected officials, or unusual disease rates
identified on State or national surveys. Then there would be a
preliminary agency review of the site to assess whether there does
appear to be an unusually high rate of disease in the identified area.
Finally, the site would be prioritized against a set of criteria that
would allow the agencies to hone in on sites of greatest public health
concern. The selection criteria would need to be developed by the
agencies, pursuant to S. 76, and would presumably need to undergo
public review and comment.
Question 5. EPA currently regulates the emissions of toxic
substances, and required pollution controls will reduce emissions of
many other chemicals. Are you in favor of requiring additional
reductions, and additional controls, to address potential disease
clusters?
Response. I believe that significant disease clusters need to be
investigated, and that any additional actions should be determined
case-by-case based on the results of the investigations. I do not favor
any across-the-board requirements related to pollution reductions or
controls related to disease clusters until the investigations have been
done. If an investigation of a particular site were to demonstrate the
need for additional actions to protect public health, I would favor
such actions using EPA's existing statutory authority.
Question 6. Under S. 76, what do you think would constitute
``clearly'' describing ``the basis for the requested investigation or
action'' when it comes to a petition by a person for investigation?
Response. I may not be the best person to answer this question, as
I am a medical doctor, and not a lawyer. However, I read ``clearly'' as
a layperson would: that the petitioner should explain, in as much
detail as is reasonable given the circumstances, the basis of their
concern, including any statement and supporting evidence regarding
particular types of health concerns that the petitioner believes may
constitute a disease cluster, concerns about potential sources (if the
petitioner has identified any), and the basis for identifying or being
concerned about those potential sources. In other words, I interpret
``clearly'' in this context to be an encouragement for petitioners to
provide as much detail as possible about the nature and scope of their
concerns, along with whatever supporting evidence (data or information)
may exist. Encouraging such clarity seems designed to make the job of
identifying, investigating, and prioritizing problems at least somewhat
easier and more efficient for EPA and the other Federal, State and
local parties involved.
Question 7. The definition for membership on Community Disease
Cluster Advisory Committees shall include ``individuals who are or may
be impacted by a suspected or potential disease cluster, and the
designee of such an individual who may participate with or in the place
of such an individual.'' Is there anyone in the United States that does
not meet that definition? Should attorneys for clients with potential
suits against local companies or manufacturers be included in the
definition of ``designee''?
Response. Like the previous question, this is not something that my
professional expertise really touches upon. However, I suspect that the
intended scope was somewhat narrower than the question suggests. In
particular, it seems fairly clear to me that the intent is that these
Advisory Committees should include representation from some community
members that are impacted by local disease clusters, which appears to
me to be a laudable goal. The precise wording seems like a relatively
simple matter that can be resolved and clarified, and not something
that should unduly hold-up passage of this worthwhile legislation.
Senator Boxer. Thank you very much.
Each of us will have 5 minutes to question, and so I would
ask you to keep your answers brief so we can get to all of you.
I just wanted to say to Dr. Belzer, I want to clarify. On
page 7 of our bill, we do use a definition of how a disease is
defined. It is defined exactly the way the National Institutes
of Health define disease, word for word. Then we even add an
extra paragraph about the fact that if science improves and
there is a better way to do it, we will do that. So I do feel
comfortable, but I am happy to work with you if you think there
are ways we can make it better.
The other thing is you point out that we force the EPA to
look at all the various pollutants, but I want to point out we
don't exclude anything like genetics or anything else. We just
say they have to include these because if they don't, then we
will never know the answer.
So I really think that I appreciate your criticism and I
know you are a minority witness today that differs from Trevor,
but I just think the important thing is to work with us. Would
you be willing to do that if we can tighten this up and you
feel better about it? That would be wonderful. OK.
Trevor, you have testified before that your family has had
difficulties in the past with the tumor registry. When asking
for an investigation, you had problems as a family in looking
into this cancer cluster, which is why Senator Crapo and I
wrote this bill.
Could you describe the importance that you place on
government agencies at all levels meaningfully involving family
and community members in a cancer cluster investigation, the
importance of including the families themselves?
Mr. Schaefer. Thank you for your question, Chair Boxer.
I believe that the citizens and communities want to look to
their government for answers. When they have questions about
what is in their surrounding environment, they would like
somewhere to go to talk to where they are not told they are
statistically insignificant, which is what we were told. That
even if the data we had proved correct, that our town was too
small to warrant a study.
So I think that strengthening the coordination and
accountability of Federal, State and local agencies is key to
creating that line of communication.
Senator Boxer. Of course, that is what we are doing here.
We are bringing together, I think, a more effective way to
respond by including the communities so there is no frustration
out there and you get the answers.
Ms. Brockovich, your testimony emphasizes the importance of
ensuring accountability and transparency when government
agencies investigate potential disease clusters. What are the
main benefits to the people who are stricken with illness and
to other people in their community from increased transparency
and accountability as we look at these clusters?
Ms. Brockovich. I think it is clearly important to at a
deep level have the community involved, as Trevor has just
indicated, what he was just saying. Communities try to reach
out to agencies. It can be cancer registries or local agencies,
State and/or Federal, and oftentimes they are just treated as a
statistic and they aren't heard and they want to be a part of
the process.
I think that they are distrusting as a community. They want
to look to agencies. They believe that they are the ones that
are overseeing them, and then when they find out something has
slipped through the cracks, it begins a distrust process. So
for them to be part of the process with either the companies,
and clearly their agencies, it begins to reestablish trust.
Because a lot of times, when you don't have that, we are
not finding out the information that we need to know from them
which, when I am in these communities, you have to get to know
them, kind of be on the ground with them, and they will begin
to provide you with information that will give you more answers
so we can begin to find a solution.
So it is very important that they be able to work with you
and they don't feel that they have been able to do that.
Senator Boxer. How many people have contacted you for that
map that you showed us before? Could somebody hold up that map
so Senators who weren't here could look at it? This is a map
that Ms. Brockovich put together, calls to her because she is
famous and she is known for going after these problems.
I would just say, and this is sort of a rhetorical
question, but it is OK, don't you think that this indicates
that people are frustrated? It is unbelievable to me that they
would call you, someone in the private sector, rather than call
the EPA or the NIH. Maybe they are calling them as well. But
doesn't this indicate a level of frustration out there that
people don't feel they are being heard?
Ms. Brockovich. They don't feel they are being heard, and
that is why I started this map, again, over 40,000 emails that
I trafficked just on my Web site each month. What happened for
me about 8 months ago was that I kept seeing from communities,
we are concerned; we are seeing too many cancers; we are
hearing of too many cancers.
So that becomes a flag for me, when I have not one
community, not 5, not 10, but 20 and 50 and 100 telling me the
same thing. So I started to map it. They are frustrated and
they want some answers.
As you said earlier, not everything that when we look into
it will be related to an environmental issue. In some instances
it could clearly be and we may be overseeing it because these
people don't just naturally wake up and learn of their friend
with cancer and their neighbor, or they get to know each other
in the hospital and they don't realize that they are neighbors
within the same blocks.
They are very, very frustrated and they are trying to find
a way to reach out. They don't wake up and go, wow, we should
call CDC and report this; we should call the National Institute
of Health and report this. I would have to tell you, 80 percent
of the people in their emails to me that have created this map
have said, we just don't know where else to go.
Senator Boxer. Well, I think the Boxer-Crapo bill is really
trying to address this, and I hope colleagues will jump on as
cosponsors and we can get this done quickly through the
committee.
Senator Crapo.
Senator Crapo. Thank you, Madam Chairman.
Trevor, I just wanted to say I found your testimony
incredibly informative and compelling, and again I want to
thank you for making the effort to come here and be with us.
One of the things that you said in your testimony was you
referred to your mother's experience when she went to the local
cancer registry in your community to raise concerns about a
potential disease cluster, and that she was told that basically
your town was too small to warrant an analysis and your case
was statistically insignificant.
Could you just comment a little further about that, about
what did you do next after you had that experience?
Mr. Schaefer. Thank you, Senator Crapo.
What we did is fortunately we were able to take it upon
ourselves to get a proper scientist to conduct studies on a
personal level to find out some answers and kind of start the
ball rolling to see if there were indeed problems in our
community.
Senator Crapo. Did you get assistance from any governmental
agencies, whether it be the Federal, the State or the local
government in finding that scientist to help you?
Mr. Schaefer. We did not, no.
Senator Crapo. I guess the next question I was going to ask
you is you indicated in your testimony that you found that the
government's response was piecemeal to non-existent. I guess
that is the reality that you ran into. You didn't have formal
government direction to turn to where there was a government
process in place where coordination was occurring.
Mr. Schaefer. Yes, and that is exactly where the statement
comes from is from our experience in being told that we were
statistically insignificant, absolutely.
Senator Crapo. Thank you.
Erin, in your testimony, you indicate that the CDC's ATSDR,
which I understand is the Agency for Toxic Substance Disease
Registry, if I have the acronym correct, you indicate that you
think that the ATSDR has serious challenges in identifying and
responding to disease clusters. Could you clarify that?
Ms. Brockovich. Well, from just experience of 20 years in
being out in the field with these communities, and I talk to
them and as they are trying to track whether there are clusters
or not, and we inquire of them if ATSDR has been there, 99
percent of the time they have indicated that that agency has
made no such effort to come in and find out from the community
what is happening.
One thing that I think is really very important that we
think might be some flaw in how we are identifying these is
these registries and these groups don't come in and watch the
movement of where these people are going. Many, many times, if
we find out we live in a contaminated community and we are
fortunate enough to do so, we move. Now we have lost track of
where these people have gone. When people come down with
cancer, they report it to the State in which they reside. They
don't report it to the State where they are from.
So we could potentially be missing hundreds, if not
thousands of people because we can't track their movements and
their geographic location, which I think is very important.
From experience in dealing with these communities,
specifically with ATSDR, which is the agencies that are out
there to track disease registries, they are not there. They
haven't been to the communities and it is frustrating for them,
and that is where they feel their voices are not heard.
Senator Crapo. Thank you.
Dr. Belzer, could you comment a little bit from the
scientific perspective of how we deal with this statistical
significance issue when you have a small town where we all
recognize how you have small numbers. What do you do to deal
with this problem?
Mr. Belzer. Trevor's experience is something I am not
familiar with it, so I can't comment on that. But the term
statistical significance should normally be used only after an
analysis has already been done, when data have already been
collected. It is not something that should be said of anything
or anyone before data have been collected. It is an odd thing
to imagine.
I do believe that the terminology, which is normal in
classical statistics, is deeply offensive to a lot of people
because they understand the term insignificance to mean that
they are insignificant. This problem probably could be
addressed if the epidemiologists applied a different set of
tools. It takes away from some of that. They are also probably
superior tools than classical methods for the nature of the
problem at hand.
But epidemiology understands all that. I think that is just
a case of scientists communicating in their own jargon in ways
that non-scientists don't fully understand. They could be far
more sensitive about it.
Senator Crapo. I see my time is expired. Thank you, Madam
Chairman.
Senator Boxer. Thank you.
Senator Lautenberg.
Senator Lautenberg. Trevor, you said something in your
commentary, and we so much appreciate your being here. You said
you were glad to be alive. We are all glad that you are alive.
I am a professional grandfather. I have 10 grandchildren and I
know what I want for them, and so far the conditions that they
have run into are relatively mild when compared to cancer.
One of the things that I find so disturbing is that in this
place of contemplation and legislation, we often hear sympathy
for those who are afflicted with cancer or other threatening-
to-life diseases. But somehow or other, we separate the heart
from the mind here because we will get into a talk about costs.
What is a cost to save a child's life? It doesn't matter what
the cost is. There isn't a family in the world who wouldn't
dispose of all of their assets to save a grandchild or a
child's life.
I have been fortunate enough to be involved in some cancer
research. Dr. Solomon, did you ever hear of the Jimmy Fund? It
is a prominent Massachusetts situation.
Dr. Solomon. Yes.
Senator Lautenberg. Was that also in Woburn, MA?
Dr. Solomon. That was. Jimmy Anderson was one of the first
children diagnosed with leukemia in Woburn. He unfortunately
passed away.
Senator Lautenberg. Do you know a physician named
Landrigan?
Dr. Solomon. Yes, Dr. Philip Landrigan from Mount Sinai
Hospital.
Senator Lautenberg. Yes, a close friend, a good friend of
mine. He supports the legislation that I have proposed, and
that is to find out whether these chemicals that are being
introduced into products, you name the kind of product, as a
very important first step. I appreciate the fact that all of
you are here to sound the alarm and let people know they are
not exempt. No one is exempt.
We do a lot in this committee of ours, Environment
Committee led by Senator Boxer, to try and get conditions that
will protect children's health. That includes clean air. It
includes getting rid of toxins and toxic materials coming out
of smokestacks and that kind of thing.
But I wonder, do you see communities rising up and saying
that company, XYZ Company, dumped their waste here and they
should pay the price that cleanup demands. Do we ever identify,
Ms. Brockovich, the companies that say, OK, you have done it;
you fouled the air; you fouled the water; you violated our
children's health.
Is that ever brought to the attention? Because I think it
would be a good idea. I ran a business before I came here, and
the regulatory--what did you call your company?
Mr. Belzer. Regulatory Checkbook.
Senator Lautenberg. Checkbook. I ran a company called ADP.
I have been fortunate enough to be able to respond to the early
deaths of my father, 43, my uncle in the same family, 52, my
grandfather, 56, all from cancer, all who worked in the silk
mills of Paterson, NJ, an industrial city.
So when the chance came along, I was able to help start a
cancer research facility and it is supported by, do you know
Dr. Jim Holland, by any chance, Dr. Solomon?
Dr. Solomon. I know the name, yes.
Senator Lautenberg. He did so much on childhood leukemia.
I have several questions that I would like to put to you,
but in keeping some time discipline, it is not easy for a
Senator. I would ask you this, Dr. Solomon. The investigation
into unusually high cancer rates in Toms River, NJ, languished
because the New Jersey cancer registry was outdated when the
investigation began. Looking at the bill proposed by Senator
Boxer, the Disease Cluster bill, wouldn't that have a good
effect on situations like this, like the Toms River identity,
and evaluate disease clusters more quickly? We have to get
ahead of the curve on this and I think it would be a terrific
thing to do if we can move it.
Last, if I am forgiven for another minute, I have proposed
a piece of legislation which I mentioned here, that we would
like to see all chemicals that go into a product, that are then
circulated throughout our world, identified as being safe for
children's health before it goes into the product, so we then
don't have to look at, like we do with TSCA toxic reform law,
which said we should investigate chemicals and see what kind of
harm they bring.
We have investigated 200 chemicals out of 80,000. Eighty
thousand. It is not a good idea to have EPA searching for those
things that are at fault, as opposed to jumping on the
bandwagon, getting this done before. I would plead with you, be
in touch with your Senators and make sure they understand the
problem they have had.
Trevor, you are a soldier in this battle and we want you to
keep on fighting. We are proud of you.
Thank you all very much.
Senator Boxer. Senator, thank you for pointing out that the
Boxer-Crapo bill deals with the problem after the fact. There
is no question about it. Nothing in this bill is going to
prevent cancer clusters. We are just saying if one occurs,
let's have a way to respond. Let's have a way to tell our
communities the best we can what are the probable causes of
this first of all, most of all, to protect other people and
also to resolve their questions.
But what Senator Lautenberg is talking about is a new way
to make sure that before these chemicals are introduced, even
more chemicals, that the burden changes so that the company or
person or the group that wants to introduce the chemical must
prove it is safe before introduction. That is a very different
and important move and I, of course, will support you 100
percent. But these are different approaches to the same issue,
but they are complementary.
Senator Boozman. Thank you for being here, Senator.
STATEMENT OF HON. JOHN BOOZMAN, U.S. SENATOR FROM THE STATE OF
ARKANSAS
Mr. Boozman. Thank you, Madam Chair.
This is certainly a very, very important problem, and I
guess it is one that because of the nature of communication
being so much easier now and the ability to perhaps keep track
of things so much easier, it is something that we can address.
I guess my concern is really two or three things. Again, I
believe very strongly that we need to deal with the problem. I
am concerned that some of the things that we have in place, the
registry program evidently is not doing a good job.
Then also I guess I am concerned that we are talking about
it being under EPA, as opposed to, I guess my question would
be, why not the CDC or the NIH or the FDA? All of these groups
have things that they are involved in in a similar way.
We are talking a lot about cancer, and cancer is a
devastating disease. There are lots of neuromuscular diseases,
again, that are associated with this sort of thing.
So I would really like for you all to talk about that a
little bit. To me, there is no excuse if we have a registry
problem, we need to get it fixed. I think that that would help
a great deal. We might need to totally revamp that. There are
lots of things, diseases now that we need to be following that
we are not following. So we can do a much better job of that.
But I do have concerns also about perhaps duplication, and
then maybe there is a better way to do this through some of the
agencies that are set up really to investigate. Because along
with this, you have these clusters, but the cluster might be
something there that we are eating not enough of or too much
of, besides the environmental concerns that have been raised.
So I appreciate the testimony. I think it is very, very
helpful. Your written testimony I got to look at last night,
and I do appreciate it. Again, it is something that we very
definitely need to work on.
So don't misunderstand. I am committed to helping, but I
just want to make sure that we are doing this right and that we
don't have more duplication in spending our resources in a way
that we really could get very, very aggressive and hold those
accountable that are already doing this and get them to do a
better job.
Does anybody want to comment? Yes, ma'am.
Ms. Brockovich. I will. You brought up a couple of points
that I just wanted to hit upon that I have found interesting in
dealing with all of these communities in their reporting to me.
There doesn't appear to be any national people's registry where
they can report. More often than not, if somebody has cancer,
that I have learned from these communities and those with
cancer, is their doctors or an agency will actually do the
reporting. They don't get to do the reporting, which is why I
think they have started to bring information to me.
One phenomenon that I am seeing happening out there in this
Facebook work that we live in now is emails coming from people
that through Facebook have now found their old high school
mates, but they have all been dispersed throughout the United
States or in other parts of the world. Once they are stitched
back together, they are actually learning that all of them have
cancer, similar types of cancer, and were able to pinpoint them
back to one location.
So I know there are many agencies out there that are
involved, but there isn't one in particular that reports and
compiles the data that are coming from the actual people and
the actual sources, as this map would kind of indicate.
So they need a specific place to report to, not just CDC,
but somewhere they can go and report their actual cancer and
indicate where they are from, not necessarily where they
currently reside.
So being able to possibly share all the data, because I
don't know what exists at CDC or EPA or ATSDR does or doesn't
have about certain communities, but to be able to open the
doors and share that data between local, State and agencies to
see what you have, and then be able to maybe start putting
stuff like this on top of it to see what we are missing,
because they are not reporting it to your agencies who are
supposedly making the reports. The information is getting lost.
Senator Boozman. I agree, and I think again the sharing of
data and, as you say, we are in a Facebook age that does make
that so much easier.
Ms. Solomon?
Dr. Solomon. Yes, your points, Senator, are very important.
The problems with tracking diseases in this country are quite
serious. The cancer registries have gaps in many States and
many diseases that are very important, especially some diseases
that appear to be rising such as Parkinson's disease are really
not tracked at all. So that is an important and related issue.
But I also wanted to speak about this issue of duplication,
because it is a tricky issue because in my view coordination of
resources is very, very important, and making sure that the
appropriate expertise is deployed to address these clusters is
also very important.
Up until now, the fact that it has really been ATSDR or the
States that have responded to clusters means that not all of
the necessary resources are at the table, especially some of
the environmental sampling approaches.
In addition, when we were involved in researching our
report on disease clusters, we contacted the ATSDR, which is
housed at CDC, assuming that they would be tracking disease
clusters and could tell us where the disease clusters are. They
told us that not only do they not track disease clusters and
have no information about where they are located, they told us
furthermore that they are no longer investigating disease
clusters.
So we said, well, if that is the case, who is? They said
this is the role of States and local governments. Those
entities don't have the knowledge and skills. So that is why
legislation like this will bring all of those resources
together.
Senator Boozman. Thank you. I don't want to get gaveled on,
but I think the point that you make about coordination is a
good one.
Again, I guess I just have to work further to see if the
CDC is not doing that, should they be the lead agency doing it
versus the EPA? Do you see what I am saying?
The other thing, Madam Chair, is, and again, this is
something we really need to look at in the sense that we are
really concerned about spending money these days because the
Federal Government doesn't have it. But this type of thing,
improving the registries, getting some of these things under
control really would save a tremendous amount of money. So that
is I think a point we need to make.
I yield back. Thank you.
Senator Boxer. Well, Senator, thank you so much again for
coming, and Michael and I are very hopeful you will join us and
I hope you will look at this bill.
I want to answer your one critique, but also mention that I
really agree with you on the cost, and I would ask unanimous
consent to put into the record this report from Cancer Facts
and Figures done by the American Cancer Society. They say about
1,529,000 plus new cancer cases are expected to be diagnosed in
2010. The estimate does not include non-invasive cancer and it
also doesn't include skin cancers.
So and then later on they talk about the cost in here and
it just is mind-boggling. What are the costs? The NIH estimates
overall costs of cancer in 2010 at $263.8 billion. That is
$102.8 billion for direct medical costs; $20 billion for
indirect morbidity costs, that is lost productivity; and $140
billion for indirect mortality costs, costs of lost
productivity due to premature death.
So your point is so well taken. I think if our bill moves
forward and we can get to the bottom of this, and let's say we
go into a place and we find that, no, there is no connection to
the environment, and they may find it. They found it in several
cases in California. All right. We tried. It is really genetic.
If they find out that there is something in the soil or the
air or the water that we can fix, now you are going to prevent
a lot of these cancers from happening. So I think our bill at
the end of the day, it calls for efficiency as we move forward.
Now, I wanted to talk about why EPA. I think it is a fair
question. This bill isn't an EPA bill. It says that all the
agencies are going to coordinate. The reason we said EPA is if
they find it is an environmental issue, it is EPA that has the
ability to deal with air, water and soil. The others, CDC,
doesn't. They will find out what the cause is, but they can't
move to fix it.
So we wanted to give the Agency that could fix the problem,
if there is a problem, the lead so that this isn't just an
exercise. It actually has follow-through. But if you are
concerned about this, if you want this spelled out, but let us
work together because I have to say this, and Trevor knows this
and he made the point that he is both the minority witness and
the majority witness.
In these days when we have so much rancor, I would hope we
could come together around this very simple idea. So if there
is something really troubling you or bothering you, you want to
work with us in a positive way, that would be fine. We want to
get this out. We want to move this.
We want to show America that we are now happy to see Erin
Brockovich, who is a private--you are an attorney now. Yes? You
never did do that. Well, she is an attorney by osmosis then, an
advocate, an activist and an advocate for communities, that
people are calling her because they are frustrated with our
response.
I would also put in the record a little acknowledgment
here. The California EPA and the Department of Public Health
expressed their appreciation to the U.S. EPA for providing
important technical consultation as they looked at causes of
birth defects in Kettleman, CA. Now, the jury is out. We don't
know whether this is a cancer cluster due to environment or
something else. But I think the EPA can be very effective and
it is nice to get this comment from my State, so I wanted to
put that in the record.
[The referenced information was not available at time of
print.]
Senator Boxer. So I guess, and I have to say this was
written in December, 2010, so this was before Jerry Brown took
over. This was written by Arnold Schwarzenegger. I think it is
important. It was a bipartisan thank you.
So Trevor, I would like to give you the last comment of the
day from the panel. If there is one thing you could tell
Senator Boozman because he missed your testimony. If you could
sum up why you support the Boxer-Crapo bill, if you could look
him in the eye and tell him what it is, that would be
wonderful.
Mr. Schaefer. Well, thank you, Senator, for being here. I
have known many children who have lost their lives and lost
limbs to cancer, and it is heartbreaking to see that. I think
that is why we are all here today, to do what we can. As Chair
Boxer said, if there is a problem, that we address that.
I would also like to say that the medical community, tumor
registry, CDC, are overburdened with data. I think that this
would streamline and consolidate the process.
So that is it. Thank you.
Senator Boxer. Thank you very much.
Well, I want to say thank you to this entire panel, all of
you. You have just helped us enormously.
Senator Boozman. Madam Chair?
Senator Boxer. Yes, yes, please.
Senator Boozman. Could I just say one thing?
Senator Boxer. Senator, of course.
Senator Boozman. Again, I guess what I was thinking, the
British Navy, they had a problem in the old days because their
sailors were developing scurvy. So they were able to discover
that that was from lack of getting vegetables when they were on
board, fruits. So I guess what I would like is a situation
where when we have a problem in a cluster, regardless of the
disease, that when we go and investigate we investigate and
figure out the cause, which if the EPA came out, and again I am
not slamming the EPA at all, but you tend to think in terms of
your training and whatever. They established that the paint on
the boat was good, the decking was good and there was no
environmental cause in that way, then we wouldn't have
discovered that the people needed to be eating more fruits.
So I guess that is my only concern is where we are going
and what agency. I think as Ms. Solomon said, coordinate.
Senator Boxer. Yes, well, this is what I am trying to say.
We include every agency. Well, that is the whole point of the
bill. If the entire response is coordinated, it includes the
EPA, the ATSDR, the NIH, the CDC. Everybody is involved.
In addition, we pull in the State apparatus. We pull in the
local, city, county. You are exactly right. You don't send in
the EPA. That is not what our bill does. Our bill says we are
going to coordinate this response. So everything that you said
is what we do.
It is high time we did it because I don't want to see a
private citizen getting calls because there is no faith in the
government right now, because we are just not coordinated.
So I hope you will take a look at this, and I think you
will like what you see. Again, if you want us to make it more
clear, we will make it more clear.
I want to thank so much this panel. You have been excellent
witnesses, and I look forward to the day that we pass Trevor's
Law out of this committee and bring it down to the floor. We
have everyone's support and we move it through.
Trevor, you know life takes so many twists and turns, and
it is a mystery why. But clearly, your life took a twist and a
turn in a way that has given you the power to communicate your
story and the empathy and the compassion that you bring to
this. Frankly, your common sense side as well is extraordinary.
I just thank you. You could have gone on with your world
and put this behind you and said, wow, I dealt with this in my
life, but I am closing that chapter.
What you are doing is so enormously helpful and we are so
grateful. Your Senator is so proud of you and we thank you.
We stand adjourned.
[Whereupon, at 11:25 a.m. the committee was adjourned.]
[Additional statement submitted for the record follows:]
Statement of James M. Inhofe, U.S. Senator from the State of Oklahoma
Thank you, Madam Chair, for scheduling this Oversight Hearing on
Disease Clusters and Environmental Health, and in particular children's
health.
We can all agree that protecting children's health is of great
importance. I agree with the overarching goal of S. 76, cosponsored by
Sen. Crapo (R Idaho). It goes as follows: ``[protect and assist
pregnant women, infants, children, and other individuals who have been,
are, or could be harmed by, and become part of, a disease cluster. .
.'' Who can disagree with that? I have 20 children and grandchildren,
and I think they fall into this category.
But general concern for kids and pregnant women is not the end of
the matter. As one of our witnesses today, Dr. Richard Belzer, notes in
his testimony, ``Detecting disease clusters is a very difficult
epidemiological and statistical problem.'' How we actually dig into
this issue and decide the best courses of action are obviously up for
debate.
At a minimum, we need to ensure the Federal Government, to the
extent it's involved in the issue, is relying on the best available
science, and doing so in an open and transparent manner.
We should also define, as best we can, science-based limits on what
we are searching for and devise appropriate measures to address it once
it's found. We need to ensure that we have clear goals and that we have
definite measures of what we mean by ``success.'' This is especially
important, for, as Dr. Belzer noted, ``open-ended goals combined with
indeterminate measures of success often result in significant future
conflict.''
The nation has an existing scientific structure for dealing with
disease clusters--I hope we can examine this structure today and
determine whether it's adequate or not. At this point, I think it is.
Currently, investigating and addressing cancer and disease clusters
is handled at the Federal level by the Center for Disease Control,
specifically by the Agency for Toxic Substances and Disease Registry
(ATSDR). This is a very capable agency, and I believe it should retain
this exclusive authority.
The reason I think this is clear: The ATSDR is an agency with a
long history in public health, with the expertise and knowledge
necessary to identify and deal with disease clusters. For example, it
has an existing infrastructure that facilitates communication between
State and local public health departments, as well as local physicians.
It is not a regulatory agency, and I think we should think twice
before vesting authority of this kind in a regulatory agency, subject
as it is to political pressures, as well as the inherent tendency to
issue rules and mandates.
It is vitally important we continue our efforts to identify, treat,
and diagnose disease clusters using the best available science. Thank
you again for holding this important hearing, and I look forward to
hearing from our witnesses.