Families Against Cancer & Toxics

Washington DC - Families Against Cancer & Toxics announces its support for new legislation to strengthen protections for children and communities from disease clusters, introduced yesterday by Senators Bill Nelson (D-FL), Barbara Boxer (D-CA), Amy Klobuchar (D-MN), and Frank Lautenberg (D-NJ). This long-awaited legislation helps communities determine whether there is a connection between “clusters” of cancer, birth defects and other diseases, and contaminants in the surrounding environment.

The National Disease Clusters Alliance (NDCA) applauds this bill. “There is true vision in creating a solution in which government, science and community work as equal partners in responding to disease cluster inquiries,” NDCA Executive Director Terry Nordbrock stated. The National Disease Clusters Alliance (NDCA) was formed in 2005 out of the urgent need to identify and respond to emerging disease clusters. NDCA is headquartered in Tucson, Arizona, and is made up of a unique cross-section of representatives across the country from non-profit organizations, community activists, scientists and academia.

“There is now an urgent need to identify and respond to emerging disease clusters in communities,” Nordbrock reports. “Fortunately, this bill will revolutionize the experience of communities facing disease clusters.” 

Senator Boxer said: “Whenever there is an unusual increase in disease within in a community, those families deserve to know that the federal government's top scientists and experts are accessible and available to help, especially when the health and safety of children are at risk. I am pleased to be introducing this legislation today that will enable communities to get the answers they need as quickly as possible.”

Throughout the country, there are communities that experience unexpected increases in the incidence of birth defects, cancer and other diseases. The legislation being introduced today is designed to:

o Strengthen federal agency coordination and accountability when investigating these “clusters” of disease;

o Increase assistance to areas impacted by potential disease clusters; and

o Authorize federal agencies to form partnerships with states and academic institutions to investigate and help address disease clusters.

The legislation being introduced was initiated by Susan Rosser and Charlie Smith with her son, Trevor Schaefer, co-founders of Trevor's Trek Foundation, in association with two scientists from the University of Arizona, Mark Witten and Paul Sheppard. Trevor survived a 7-year battle with brain cancer from the age of 13. Since that time he and his mother have worked tirelessly to raise awareness of disease clusters and their possible links to toxins in the environment. 

“Environmental toxin exposure is insidious in all instances, yet affects our children in greater proportion than adults,” says Trevor. “This bill will help eradicate predatory disease by bringing together agencies with the relevant expertise needed to investigate these clusters.”

Currently, chronic diseases like cancer, birth defects, and multiple sclerosis strike over 100 million men, women and children, accounting for more than a third of the U.S. population. These diseases are responsible for seven out of ten deaths in the United States.

Around the country-from the Acreage, Florida to Kettleman City, California to Fort LeJeune, North Carolina-communities are faced with unusually high rates of disease, or in other words, disease "clusters," and health officials are unable to determine why. Questions abound about what is causing these elevated rates. Is there something in the drinking water? Does the nearby military installation impact our health? Is the air we breathe causing us to get sick? Too often questions posed to local health officials are not answered satisfactorily or not even responded to at all.

Although over 1000 concerned residents request investigations into suspected disease clusters every year, cluster investigations are rarely undertaken by government agencies. When it comes to tackling infectious disease, public health institutions perform well, but they do not have the same ability to identify and respond to environmentally-related illnesses. Health officials are currently working with their hands tied as they don't have the resources or time to address the concerns. This results in tremendous frustration for concerned community members and a significant loss of trust in government. This bill will increase federal and state capacity to answer questions about disease clusters asked by concerned community members.

While no community is immune from a potential disease cluster, residents of low-income and racial minority communities are at disproportionate risk for exposure to environmental hazards, and potential disease clusters. This bill will create safer and healthier communities across the nation, by identifying communities at risk and halting emerging disease clusters.

This bill will provide more research into causation and prevention of disease. By investigating the environment in areas with health impacts, we have the opportunity to address significant weaknesses that presently exist in the investigation of possible disease clusters. Bringing environmental agencies to the table will support the ongoing work of health agencies and add important scientific expertise to these investigations.

A strength of this bill is that it includes access to laboratories to conduct biomonitoring and environmental analysis to measure contaminants in people's bodies as well as in air, water, food, and soil. This lack of data is the weak link in current risk assessment and environmental exposure analysis. Communities currently lack access to technical assistance and this bill corrects that. 

Transparency and governmental accountability are overarching goals of this legislation and have the potential to make agencies more proactive rather than reactive.

The sponsors of the bill have also received letters of support from the Breast Cancer Fund; the Center for Health, Environment and Justice; the Children's Environmental Health Network; National Disease Clusters Alliance; Natural Resources Defense Council; the Sierra Club; and Dr. Philip J. Landrigan, MD, MSc., Professor of Pediatrics, Dean for Global Health, Professor and Chairman of the Department of Preventive Medicine, Director of the Children's Environmental Health Center, Mount Sinai Medical Center.

Disease Cluster and Hotspot Map