WASHINGTON, D.C. — U.S. Sen. Sherrod Brown (D-OH) today questioned National Institutes of Health (NIH) Director Francis S. Collins on what work the agency is doing to investigate disease clusters, including the Clyde pediatric cancer cluster that has claimed the lives of at least four northwest Ohio children. Collins testified today before the a U.S. Senate Appropriations Subcommittee hearing regarding the National Institutes of Health’s (NIH) budget request for Fiscal Year 2012.

“As one of our nation’s premier medical research centers, the National Institutes of Health plays a vital role in investigating disease clusters. In Ohio, the Clyde pediatric cancer cluster has sickened more than 35 children and led to at least four tragic deaths,” Brown said. “With advancements in modern medicine, no child deserves to have to fight for his or her life because of pediatric cancer.  And no family should be left wondering if the community they live in is making their children sick.

“I want to know what the NIH is doing to better understand disease clusters, like the one in Clyde, and what research is being carried out on pediatric cancer, which doesn’t receive nearly the same amount of research attention as adult cancer. I’m asking NIH to work together with other agencies at the Department of Health and Human Services—along with the Ohio Department of Health—to solve the Clyde cancer mystery once and for all,” Brown continued.

Background

The National Center for Environmental Health at the Centers for Disease Control and Prevention (CDC) defines a cancer cluster as a “greater-than-expected number of cancer cases that occurs within a group of people in a geographic area over a defined period of time.”

In March, Brown signed on to the Strengthening Protections for Children and Communities From Disease Clusters Act, which would require the Administrator of the Environmental Protection Agency (EPA) to: (1) develop, publish, and update guidelines on an approach to investigate suspected or potential disease clusters, environmental pollutants or toxic substances associated with such clusters, or potential causes of such clusters; (2) establish and operate Regional Disease Cluster Information and Response Centers and Regional Disease Cluster Information and Response Teams; (3) ensure that the Office of Children's Health Protection has a prominent role in developing and updating such guidelines and in establishing and operating such Centers and Teams; (4) establish Community Disease Cluster Advisory Committees to provide oversight, guidance, and advice relating to such investigations; (5) provide support to individuals on such Teams and Committees through grants and cooperative agreements with institutions of higher education; (6) compile and update a publicly available, online database that provides information relating to disease clusters; and (7) use available authorities and programs to compile, research, and analyze information generated by actions authorized under this Act.

The legislation would also authorize any person to submit a petition to the EPA Administrator, the Administrator of the Agency for Toxic Substances and Disease Registry, and the Director of the National Institute of Environmental Health Sciences that requests that a Response Team conduct an investigation or take action to address the potential causes of disease clusters. It also authorizes the Administrator to make grants to any group of individuals that may be affected by such clusters.

In February, Brown wrote to U.S. Environmental Protection Agency (EPA) Administrator Lisa P. Jackson and CDC Director Thomas R. Frieden requesting that their agencies provide increased federal assistance to the Ohio EPA, the Ohio Department of Health (ODH), and the Sandusky County Health Department (SCHD). Since 1996, at least 37 children within a 12-mile wide circle near Clyde have been diagnosed with brain and central nervous system tumors, lymphoma, leukemia, and other forms of cancer, and four of these children have passed away.

The Ohio Environmental Protection Agency, Ohio Department of Health, and Sandusky County Health Department have worked in cooperation to determine the cause for high rates of childhood cancer in Clyde— by meeting with families of children affected by cancer, analyzing environmental conditions in the region, conducting air monitoring throughout the region, evaluating drinking water quality, evaluating area companies’ compliance with environmental laws, and scouring existing information looking for unusual environmental conditions in the region. Despite these considerable efforts, no cause has been determined.

Brown urged Congress to pass the Caroline Pryce Walker Conquer Childhood Cancer Act. The bill— which passed in 2009— established a national patient registry for pediatric cancer patients at the CDC. It also authorized additional funding for pediatric cancer research at the National Institutes of Health. Although funding has yet to be allocated to the NIH, Sen. Brown continues to fight to secure money for the program. In September 2009, Brown and Sen. George V. Voinovich sent a letter urging Congressional colleagues to direct an additional $10 million for pediatric cancer research.

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