U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001

85–233PDF 2014

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 
(II) 

COMMITTEE ON ENVIRONMENT AND PUBLIC WORKS 

ONE HUNDRED TWELFTH CONGRESS 

FIRST SESSION 

BARBARA BOXER, California, Chairman 

MAX BAUCUS, Montana 

THOMAS R. CARPER, Delaware 

FRANK R. LAUTENBERG, New Jersey 

BENJAMIN L. CARDIN, Maryland 

BERNARD SANDERS, Vermont 

SHELDON WHITEHOUSE, Rhode Island 

TOM UDALL, New Mexico 

JEFF MERKLEY, Oregon 

KIRSTEN GILLIBRAND, New York 

JAMES M. INHOFE, Oklahoma 

DAVID VITTER, Louisiana 

JOHN BARRASSO, Wyoming 

JEFF SESSIONS, Alabama 

MIKE CRAPO, Idaho 

LAMAR ALEXANDER, Tennessee 

MIKE JOHANNS, Nebraska 

JOHN BOOZMAN, Arkansas 

BETTINA POIRIER, Majority Staff Director and Chief Counsel 

RUTH VAN MARK, Minority Staff Director 
(III) 

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 

(1) 

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 
2 

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. 
3 

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. 
4 

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. 
5 

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 Chil-
6 

dren’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 
7 

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 
8 

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:] 
9 
10 
11 
12 
13 
14 
15 
16 
17 
18 
19 
20 
21 
22 
23 
24 
25 
26 
27 
28 
29 
30 
31 
32 
33 
34 
35 
36 
37 
38 
39 
40 
41 
42 
43 
44 
45 
46 

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 contamina-
47 

tion 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 
48 

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 
49 

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:] 
50 
51 
52 
53 
54 
55 
56 
57 
58 

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. 
59 

1 Report by Majority Staff of Subcommittee on Investigations and Oversight, House Committee 

on Science and Technology, March 10, 2009. 

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

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? 
60 

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. 
61 

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 
62 

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:] 
63 
64 
65 
66 
67 
68 
69 
70 
71 
72 
73 
74 
75 
76 
77 
78 
79 
80 
81 
82 
83 
84 

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. § 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.’’ § 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 § 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 formalde-
85 

hyde, 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. § 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. 

§ 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 peti-
86 

tions; 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. § 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 (§ 7(b)(1)(B)), in the selection of Community Disease Cluster Advisory Committee members (§ 7(c)(3)), and in the procedures for peer 

review of guidelines for environmental investigations of disease clusters (§ 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 § § 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 
87 

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 § 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 § 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 §§ 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 Admin-
88 

istrator 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, 
89 

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. 
90 

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:] 
91 
92 
93 
94 
95 
96 
97 
98 
99 
100 
101 
102 
103 
104 
105 
106 
107 
108 
109 
110 
111 
112 
113 
114 
115 
116 
117 
118 
119 
120 
121 
122 
123 
124 
125 
126 
127 
128 
129 

1http://www.cdc.gov/nccdphp/publications/index.htm 

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. 

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 ben-
130 

2Lichtenstein 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. 3 Clapp RW, Howe GK, Jacobs M. Environmental and Occupational Causes of Cancer Re-visited. Journal of Public Health Policy (2006) 27, 61–76. 

efit 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. 

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. 

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 
131 

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

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. 

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 
132 

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 
133 

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? 
134 

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. 
135 

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 
136 

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 nonscientists 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. 
137 

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 
138 

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 agen-
139 

cies 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 
140 

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 environ-
141 

ment, 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. 
142 

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:] 
143 

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, ‘‘openended 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. 

Æ