[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

                               __________

  Printed for the use of the Committee on Environment and Public Works






       Available via the World Wide Web: http://www.fdsys.gpo.gov


                                 ______

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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

                              ----------                              
                                                                   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

                              ----------                              


                        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\
---------------------------------------------------------------------------
    \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.
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    \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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    \4\ http://healthyamericans.org/reports/files/healthgap.pdf.
---------------------------------------------------------------------------
    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.

                                 
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