Session I | Session II
Environmental Contamination and Chronic Diseases/Disease Clusters -- Hearing Before the Senate Committee on Environment and Public Works -- June 11, 2001
Harry Reid, Chair (D-NV); Hillary Clinton (D-NY- assumed Chair when Senator Reid departed); Gary Ackerman (D-NY); Lincoln Chafee (R-RI); Felix Grucci (R-NY); Steve Israel (D-NY); Peter King (R-NY); Carolyn McCarthy (D-NY); and Larry Craig (R-ID). Also attending was Senator Paul Wellstone (D-MN), who is not a committee member.
Panel One: Phil Landrigan, Mount Sinai School of Medicine; Jim Hare,
Elmira, NY, Councilman and Southside High School teacher;
Tim Tobin, Parent of Southside High School student cancer
survivor; Karen Joy Miller, President, Huntington Breast Cancer
Action Coalition; Randall Todd, Nevada State Epidemiologist.
Panel Two: Marilie Gammon, University of North Carolina at Chapel Hill;
Ruby Senie, Columbia University; Gail Frankel, National Breast
Cancer Coalition; Amy Juchatz, Suffolk County Department of
Panel Three: Dick Jackson, Centers for Disease Control and Prevention;
Deborah Winn, National Cancer Institute, NIH; Samuel Wilson,
National Institute of Environmental Health Sciences, NIH;
Lynn Goldman, The Johns Hopkins University.
To gain new insight into the potential links between environmental contamination and chronic diseases/disease clusters, including the high rates of breast cancer.
Senator Reid expressed his concern for people whose loved ones struggle with life-threatening illness and their frustration with not knowing the cause of that disease. He called the hearing to bring together medical experts, state officials, federal agencies and the community, all in hopes of gaining new insight into clusters of disease.
Senator Clinton echoed Senator Reid's concern for our lack of knowledge about the causes of chronic disease, particularly breast cancer. (Long Island, where the hearing was held, has a breast cancer rate higher than the national average.) She added that while funding for cancer research has increased in recent years and that genetic markers for some kinds of cancer have been discovered, the "new Frontier" of cancer research concerns the environment.
Senator Chafee cited a recent study in Sweden showing that environmental factors may matter more than genetics in determining whether a woman is diagnosed with breast cancer. This study found that the environment-what we eat, breathe, drink, and smoke, including how we live and which chemicals we are exposed to-accounts for roughly twice the risk of cancer as genes. Senator Chafee said, "There is a reason so many women in Long Island are being diagnosed with breast cancer, and I believe that the environment here holds the key to this mystery." He added that he was particularly pleased to participate in the hearing because of its relevance to S. 830, the Breast Cancer and Environmental Research Act, which establishes research centers that will be the first in the nation to specifically study the environmental factors that may be related to the development of breast cancer.
Other Members, all from Long Island, expressed their concern about the high incidence of cancer on Long Island, and their strong support for finding its causes.
Statements of Witnesses and Questions
Phil Landrigan stated that the leading causes of illness and death in the US are chronic diseases and injuries. He provided a list of statistics describing the rising incidence of asthma and breast and pediatric cancer. He discounted the argument that the increase is due solely to better detection. Better detection mostly means earlier detection - not missed detection. It produces only a temporary rise in reported incidence at the time of introduction of the new technology. Childhood cancer, especially, is not a subtle disease. It makes children terribly ill, and it brings them to the hospital.
Dr. Landrigan added that it is highly likely that environmental toxins have contributed to increasing rates of cancer. Today we are at risk of exposure to over 85,000 synthetic chemicals, most of which did not exist in 1950. Fewer than one-half have been tested.
In closing, he outlined needed steps for cancer prevention:
- Track disease
- Test chemicals
- Educate and inform our citizens
Randall Todd described in detail the ongoing investigation of the cancer cluster of children with leukemia in Fallon, Nevada. Since Nevada has a lean infrastructure for dealing with this kind of problem, they have found it essential to utilize advice and resources provided through the Centers for Disease Control and Prevention (CDC) as well as the Agency for Toxic Substances and Disease Registry (ATSDR). No explanation for the cluster is apparent.
Mr. Todd commented on some obstacles encountered and lessons learned during the investigation:
Legal profession's demands for copies of data collection instruments as well as actual data
- Media-sponsored investigations resulting in spurious connections among case families that result in panic among residents of the community
- Self-proclaimed experts who promise to find answers more quickly than public health officials
- Importance of informing community about the progress of the investigation
- Need for support for mental health professionals to provide counseling to people in a community where a significant health concern is constantly the center of attention.
Mr. Todd closed with three recommendations:
- A national registry for childhood cancer
- A set of national recommendations for environmental surveillance
- A standardized protocol that would allow federal agencies to respond to state and local concerns more quickly.
James Hare told the story of the cancer cluster (13 cases since 1997) among Southside High School students in Elmira, New York. The school is located on a former industrial site. Part of the old plant is still standing and in use next door to the school. The current owners of the plant undertook a voluntary cleanup last year which took 4 months and cost $900,000. They removed contaminated soil, fuel and chemical tanks, and electrical equipment containing PCBs. Other chemicals removed included arsenic, lead, zinc, cadmium, toluene, ethylbenzenine, and xylene. In addition, the NY Department of Environmental Control found a source of petroleum contamination under the school gym that was polluting a nearby pond.
- It is difficult to make a direct link between what is
in the soil and cancer.
- The air and water quality in the building is safe, but "hot spots" exist on
- A community can work together to search for the truth.
- Expert help serving the community interest is extremely important.
Tim Tobin's fifteen-year-old son and two of his schoolmates have been diagnosed with testicular cancer in the last few years. All were students at Southside High School. Chemicals contaminating the site include PCBs, chromium, beryllium, arsenic, lead, nickel, zinc, phthalates, and trichloroethylene. Mr. Tobin described them as known, or highly likely to be, carcinogens. He believes that industrial waste is a danger to humans; that a more diligent, cooperative approach to fix the problem, rather than place blame, is needed; and that these substances are enhancing the risks and rates of cancer in Elmira's children. He thanked the City of Elmira and its elected officials for the position and leadership they have taken on this issue.
Karen Joy Miller started the Huntington Breast Cancer Action Coalition to answer the question, "Why?" Their first major project was to map the incidence of breast cancer within their township. She firmly stated that breast cancer activists, as well as informed people everywhere, believe that toxins in the environment may be just as responsible for creating genetic abnormalities as inherited traits. Widespread and cumulative exposure to toxic agents in the air we breathe, the water we drink, the food we eat and the constant radiation our bodies absorb, may be causing dangerous alterations to the healthy cells in our bodies. Our immune system simply cannot fight them all off and, ultimately, cancer takes hold.
She asked the Members of Congress to take on some major new initiatives:
- Incentives to encourage environmental research
- New improved cancer registries
- Better information so people can make healthier lifestyle choices
- Honesty from the Federal Government about the health risks we face
- Research on the effects of groundwater on breast cancer
- Ratification of the international Persistent Organic Pollutants (POPs) Treaty
Ms. Miller concluded her statement with a vigorous plea "to help clarify our understanding of risks and to work with us to reduce our exposure to these awful chemicals that have become so pervasive in our communities."
Questions for Panel I
Senator Reid asked if children are more susceptible to environmental agents than adults? Mr. Landrigan responded that children are more heavily exposed. They breathe more air, drink more water, and eat more food per pound of body weight. They also play on the ground, their biology is more sensitive, and they are establishing new neural connections and don't have the metabolic machinery to break down chemicals. In addition, they have more life ahead; exposures early in life can lead to disease decades later, Parkinson's disease is an example.
Senator Reid asked if a national cancer registry would be helpful? Mr. Landrigan and Mr. Todd both said yes definitely. Mr. Todd added that information not generally in medical records, such as occupational history, would be helpful.
Senator Reid commented that State agencies are often understaffed and underfunded and asked if federal agencies have been helpful? Mr. Todd responded that they have been extremely helpful.
Senator Chafee asked the panel to help move his bill to establish research centers to study environmental factors causing breast cancer. Ms. Miller asked that the center be interdisciplinary and added that environmental research is seriously shortchanged.
Senator McCarthy inquired as to why we can't do tracking if we have to look at prevention - at all possible causes. Mr. Landrigan responded that there are really three issues: disease tracking, right to know, and the need for a national Proposition 65.
Senator Ackerman asked that since the public has a right to know, what do they do when they know? Mr. Landrigan answered that he would be cautious. The existence of a cluster, per se, does not mean there is a problem. Mr. Todd added that risk communication is difficult and that good science takes awhile to produce answers.
Marilie Gammon, the principal investigator of the Breast Cancer and the Environment on Long Island Study, described its primary aim to determine if organochlorine pesticides, including DDT, polychlorinated biphenyls (PCBs), dieldrin, chlORDane, and polycylic aromatic hydrocarbons (PAHs) are associated with risk for breast cancer. Altogether about 1500 cases and 1500 controls participated. Participants completed a questionnaire and provided pre- and post-treatment blood and urine samples. In addition, a random selection of participants who have resided in their homes for at least 15 years participated in a study in which house dust, tap water, and yard soil samples were collected. Findings should be published later this year. Ms. Gammon is currently examining the possible interaction between susceptibility markers and environmental exposures on risk for breast cancer. She expects results in 2002.
Ruby Senie, principal investigator for the Metropolitan NY Registry of Breast Cancer Families, which is one of six sites of the Cooperative Family Registry for Breast Cancer Studies, described in considerable detail the goals and activities of the study. Data from the six registries are merged and made available to investigators who are studying breast cancer risk associated with genetic factors, environmental exposures, life style factors, and personal behaviors. She predicted that the Registry would contribute greatly to identifying avenues for reducing the incidence and enhancing prognosis of breast cancer.
Gail Frankel made a forceful appeal for passage of the Breast Cancer and Environmental Research Act (S. 830) introduced by Senator Chafee and Representatives Nita Lowey (D-NY) and Sue Myrick (R-NC). The National Breast Cancer Coalition (NBCC) is convinced that now is the time to focus attention and public resources on developing an overall strategy to look at all aspects of the role the environment plays in the development of breast cancer. With that goal in mind, NBCC convened its first Environmental Summit in 1998 to begin developing a comprehensive strategy for studying the potential links between breast cancer and the environment.
Amy Juchatz described the activities of the Suffolk County Department of Health Services in providing support to the state health department at the local level, in conducting site visits, meeting with concerned citizens, reviewing historical health department records and by providing environmental sampling, including collecting and analyzing approximately 700 drinking water samples from residences of breast cancer cases and controls for the Long Island Breast Cancer Study. She mentioned local concern about increased incidence of rhabdomyosarcoma, a rare childhood cancer.
Questions for Panel Two
Senator Clinton expressed her concern about our lack of understanding of the role of environmental exposures in the development of cancer and asked how many cases of rhabdomyosarcoma have occurred in Suffolk County. Ms. Juchatz responded two to three per year with spikes of five to six, but a cluster has not yet been defined. Ms. Senie added that our bodies are very complex and that we need to look at the interaction between the environment and genes.
Senator Chafee noted how important it is to work with activists on an issue. Ms. Gammon responded that most activists believe that the environment plays a role.
Senator King asked what evidence is there? Ms. Gammon answered that our genetic makeup has not changed in the last 50 years. If the environmental exposure is not there, we don't get sick even if the genetic susceptibility is there. Ms. Senie added that we have to look at our own behavior and how it has changed.
Senator Grucci asked how can Washington be helpful and what environmental exposures are under consideration? Ms. Frankel responded that medical confidentiality must be insured and that support in the House for the companion to S. 830 is essential. Ms. Gammon added that anything not genetic should be considered, e.g., occupational exposures and diet. She added that some patients' rights bills will make it more difficult for scientists to do their work.
Senator Israel commented that challenge is so broad that many groups must work on it. Congress needs to pass S. 830. He asked if funding is sufficient for research? Mr. Gammon replied that current funding addresses a broad range of issues, but there is a need for more funding for research on the causes of cancer. Ms. Senie added that it costs $1200 to test one person for one gene. Ms. Juchatz noted the need for a prospective study.
Dick Jackson described how CDC responds to requests from state health departments for assistance with public concern about cancer clusters. In the public's mind, cancer clusters are caused by something in the environment until proven otherwise, but CDC must consider any possible explanation before drawing conclusions. We are making progress in preventing and controlling cancer-lung cancer incidence in California fell 14 percent between 1988 and 1997. This decline is likely related to significant declines in smoking rates as a result of aggressive tobacco control programs.
Mr. Jackson noted how difficult it is to answer questions about exposure and how important it is to track what is going on in the environment. CDC just released the first annual National Report on Human Exposure to Environmental Chemicals, which provides data on levels of 27 environmental chemicals measured in a sample of 5000 U.S. people. There is some good news: a decline from 71 percent in the early 1990's to 32 percent in 1999 for non-smoking Americans exposed to environmental tobacco smoke. On the other hand, exposure to phthalates has increased, especially in women from their cosmetics.
Deborah Winn defined environment to include not only air, water, and soil but also diet; the use of tobacco, drugs and alcohol; exposure to chemicals, sunlight, other forms of radiation, and infectious agents;and lifestyle, economic, and behavioral factors, with tobacco making the most significant contribution to the cancer burden. She described cancer susceptibility as another critical piece of the puzzle. Since understanding the interaction of genes with other genes and environmental factors in the development of cancer is critical. The NCI has identified the study of their interaction as a high priority research area with great potential for discovery.
Studies of interest include:
- The Cooperative Family Registries for breast/ovarian and colorectal cancers has collected clinical, epidemiological, and pathological data and biospecimens for over 8,000 high-risk families.
- The Long Island Breast Cancer Study Project is examining the possible role of environmental factors in breast cancer in Suffolk, Nassau, and Schoharie counties in New York and Tolland County, Connecticut.
- The Geographic Information System for Health will contain more than 80 databases
including detailed geographic, demographic, and environmental
- The Atlas of Cancer Mortality provides geographic patterns of cancer death
rates throughout the United States for more than 40 cancers
from 1950 to 1994.
Dr. Winn concluded by predicting that with the explosion of information on the fundamental nature of cancer and with the rapid development of new technologies, success in the battle against cancer is within our grasp.
Samuel Wilson began his testimony with the statement, "it is the interplay - gene-environment interactions - that holds the greatest promise in the fight to prevent and control environmentally related diseases, including cancer and many other chronic diseases." We now have the sequence of the human genome in hand and are beginning to understand the individual-to-individual variations that modify susceptibility to disease. Coupled with an expanded definition of environmental exposures that includes diet, lifestyle, socio-economic status and other factors, including environmental pollutants, we can now conduct more meaningful studies of environmental contributors to disease.
Examples of studies that illustrate the importance of environmental exposures in the development of disease:
- Environment accounts for over 50 percent of cancer risk depending on the site of the cancer.
- Twin studies on Parkinson's Disease reveal the environment accounts for 85 percent of the risk in late-onset cases.
- For autoimmune diseases such as multiple sclerosis and Lou Gehrig's Disease, environmental factors account for 60 to 75 percent of risk.
Dr. Wilson stated that although environment is a major determinant of risk for a broad range of diseases, it is not the total answer in disease development. Differences in susceptibility appear to be due to variations in genes coding for proteins critical in the body's response to environmental stress. Understanding the combination of modifier genes and specific environmental exposures is critical toward defining the causes of disease. Neither acts alone; it is the two together. A key strategy for public health will be use of results from gene-environment interaction research to estimate individual risk and then to use this information to change the conditions that permit illness to occur and to develop better treatments.
Dr. Wilson described a new model of research at NIEHS that provides for citizen participation which will generate more relevant findings, will suggest better real-world research questions, and will serve to enhance communication for the participants and their neighborhoods.
Lynn Goldman sharply criticized our public health agencies for falling short in their duty to watch over the safety and health of Americans, particularly when it comes to chronic diseases that may be associated with environmental factors. She predicted that by 2020 chronic diseases would afflict 134 million Americans and cost $1 trillion a year and noted that CDC estimates that 70 percent are preventable.
As a nation, we have been increasing our research into how to treat disease, but we have not invested in preventing chronic diseases. Even though we know about the increasing importance of chronic diseases, there is no system in place to track chronic diseases. We have never modernized our public health system to respond to today's health threats. As a former chemical and pesticide regulator, Dr. Goldman is appalled by the lack of information to make wise decisions about chemicals in the environment and our inability to prevent chronic diseases. EPA analysis indicates that only 7 percent of chemicals in commerce at high volume (greater than a million pounds per year) have screening level information about toxic effects and more than 40 percent have no information at all. In addition, we do not know which chemicals are winding up in our bodies and the bodies of our children.
Dr. Goldman made a strong plea for a national chronic disease tracking system. She noted that 17 states do not track birth defects. New York makes a good effort but does not collect data that are compatible with the national standard; therefore, they cannot necessarily be compared to those from other states. She outlined the necessary components for a tracking system and closed with a strong argument for investing in research to understand the environmental triggers that cause disease.
Senator Chafee asked if viruses cause cancer? The panel agreed that viruses have been linked to some cancers.
Senator McCarthy noted that some groups will be after Congress not to do research on environmental causes and that the grassroots organizations will have to get involved. What should the next steps be? Mr. Jackson responded that the infrastructure of public health is broken since funding has been directed to single diseases. Dr. Winn noted the need for information on biomarkers of exposure and damage and on the early development of disease. Dr. Wilson mentioned the need for information that would help implement changes in policy and lifestyle choices and that we have a unique opportunity to get more information. Dr. Goldman restated the need for a national health tracking system.
Senator Ackerman added that if scientists had the same kind of energy as the advocates, we would have made much more progress.
Senator King noted the importance of the interaction between genes and the environment and the need for patients and physicians to consider environmental factors at annual exams. He expressed his support for environmental research and asked when will we have answers. Mr. Jackson answered that it will take a generation to get where we need to go and mentioned the need for a Framingham type study.
Senator Clinton asked about NIEHS communication and outreach activities. Dr. Wilson responded that all of the NIEHS centers and Superfund programs have community outreach programs. He added that within the next 5 years we will have information on individual risk and exposure which will have an effect on our personal choices. Dr. Goldman added that we know how to do it, but we need leadership and troops to make it happen.
Senator Grucci asked why there is less cancer in the midwest and west? Dr. Winn speculated that perhaps there are fewer exposures or different reproductive patterns.
Senator Israel asked how the new NCI GIS fit into a national tracking system? Dr. Winn replied that it shows exposure; it is a system for surveillance.
Senator Clinton concluded the hearing by saying that now is the time for us to act. The questions rise to a level of urgency. Chronic disease is a national problem; citizens have a right to know what is causing these illnesses not only for themselves, but particularly for their children.
Prepared by Mary Gant, NIEHS