II 109th CONGRESS 2d Session S. 2375 IN THE SENATE OF THE UNITED STATES March 7, 2006 Mr. Coleman introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL To amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers.

1.

Short title

This Act may be cited as the Conquer Childhood Cancer Act of 2006.

2.

Findings

Congress makes the following findings: (1)Cancer kills more children than any other disease. (2)Each year cancer kills more children between 1 and 20 years of age than asthma, diabetes, cystic fibrosis, and AIDS, combined. (3)Every year, over 12,500 young people are diagnosed with cancer. (4)Each year about 2,300 children and teenagers die from cancer. (5)One in every 330 Americans develops cancer before age 20. (6)Some forms of childhood cancer have proven to be so resistant that even in spite of the great research strides made, most of those children die. Up to 75 percent of the children with cancer can now be cured. (7)The causes of most childhood cancers are not yet known. (8)Childhood cancers are mostly those of the white blood cells (leukemias), brain, bone, the lymphatic system, and tumors of the muscles, kidneys, and nervous system. Each of these behaves differently, but all are characterized by an uncontrolled proliferation of abnormal cells. (9)Eighty percent of the children who are diagnosed with cancer have disease which has already spread to distant sites in the body. (10)Ninety percent of children with a form of pediatric cancer are treated at one of the more than 200 Children's Oncology Group member institutions throughout the United States.

3.

Purposes

It is the purpose of this Act to authorize appropriations to— (1)encourage and expand the support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research; (2)establish a population-based national childhood cancer database (the Children's Cancer Research Network) to evaluate incidence trends of childhood cancers and to enable the investigations of genetic epidemiology in order to identify causes to aid in development of prevention strategies; (3)provide informational services to patients and families affected by childhood cancer; (4)support the development, construction and operation of a comprehensive online public information system on childhood cancers and services available to families; and (5)establish a fellowship program in pediatric cancer research to foster clinical and translational research career development in pediatric oncologists in the early stages of their career.

4.

Pediatric cancer research and awareness

Subpart 1 of part C of title IV of the Public Health Service Act (42 U.S.C. 285 et seq.) is amended by adding at the end thereof the following:

417E.

Pediatric cancer research and awareness

(a)

Pediatric cancer research

(1)

Special programs of research excellence in pediatric cancers

The Director of NIH, acting through the National Cancer Institute, shall establish special programs of research excellence in the area of pediatric cancers. Such programs shall demonstrate a balanced approach to research cause, prognosis, prevention, diagnosis, and treatment of pediatric cancers that foster translation of basic research findings into innovative interventions applied to patients. (2)

Fellowship of excellence in pediatric cancer research

The Secretary shall develop a grant mechanism for the establishment, in cooperation with the National Cancer Institute-supported pediatric cancer clinical trial groups, of Research Fellowships in Pediatric Cancer to support adequate numbers of pediatric focused clinical and translational investigators thereby facilitating continuous momentum of research excellence. (b)

National Childhood Cancer Registry

The Director of NIH shall award a grant for the operation of a population-based national childhood cancer database, the Childhood Cancer Research Network (CCRN), of the Children’s Oncology Group, in cooperation with the National Cancer Institute. (c)

Public awareness of pediatric cancers and available treatments and research

The Secretary shall award a grants to recognized childhood cancer professional and advocacy organizations for the expansion and widespread implementation of activities to raise public awareness of currently available information, treatment, and research with the intent to ensure access to best available therapies for pediatric cancers. (d)

Authorization of appropriations

There are authorized to be appropriated to carry out this section, $20,000,000 for each of fiscal years 2007 through 2011. Funds appropriated under this section shall remain available until expended.

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