110th Congress

Carolyn Pryce Walker Conquer Childhood Cancer Act

H.R. 1553/S. 911

Background

Childhood cancer is the leading cause of death by disease for children under 15 years of age.  The National Cancer Institute (NCI) funds a large portfolio that examines the causes of and most effective treatments for childhood cancer.  Ongoing activities include studies to identify the causes of cancers that develop in children, monitoring of U.S. and international trends in incidence and mortality rates for childhood cancers, studies to better understand the biology of childhood cancers, projects designed to improve the health status of survivors of childhood cancers, clinical trials to identify superior treatments for childhood cancers, and evaluations of new drugs that may be more effective against childhood cancers and that may have less toxicity for children.  NCI also maintains the Surveillance, Epidemiology, and End Results Program database, which provides the most comprehensive population-based registry data for cancers occurring in 10 percent of the U.S. population, including cancers defined by histology or characterized by major anatomical location and specified by age group.

NCI’s Web site contains a dedicated portal where information about childhood cancers can be found (www.cancer.gov/cancertopics/types/childhoodcancers).  The portal provides access to information about pediatric cancer treatment, prevention, genetics, causes, screening, clinical trials, published literature, statistics, supportive care, and research.  NCI also maintains a comprehensive cancer database, Physician Data Query, which contains peer-reviewed summaries of cancer treatment, screening, prevention, genetics, supportive care, and complementary and alternative medicine; a worldwide registry of approximately 2,600 open and 14,000 closed cancer clinical trials; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care.

NCI supports training programs such as the Ruth L. Kirschstein National Research Service Award; National Institutes of Health (NIH) Mentored Clinical Scientist Development Award; NCI Cancer Prevention, Control, Behavioral and Population Sciences Career Development Award; and NCI Cancer Education Program.  NCI intramural research fellowship programs can also accommodate special interests in pediatrics.

Senator Jack Reed (D-RI) and Representative Deborah Pryce (R-OH) have introduced legislation to authorize funds to raise awareness about childhood cancer and support children who are suffering from the disease and their families.

Provisions of the Legislation/Impact on NIH

H.R. 1553, as amended, states that the Secretary of Health and Human Services (HHS), in collaboration with the Director of NIH and other Federal agencies with an interest in the prevention and treatment of pediatric cancer, shall continue to enhance, expand, and intensify pediatric cancer research.  S. 911, as amended, would require the Secretary of HHS, acting through the Director of NIH and in collaboration with other Federal agencies, to enhance, expand, and intensify pediatric cancer research.  S. 911 would also require the Secretary, acting through the Director of NIH, to award grants to enhance and expand cancer research fellowships.  (The fellowship provision was deleted from H.R. 1553.)  Both H.R. 1553 and S. 911 would authorize the Secretary of HHS to award grants for public awareness of pediatric cancers and available treatments and research and require the Secretary, acting through the Director of the Centers for Disease Control and Prevention, to award a grant to enhance and expand the infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry.  H.R. 1553 contains additional provisions encouraging the Secretary to apply research to minority and medically underserved communities and requiring the Secretary to make public‑awareness materials culturally and linguistically appropriate.  H.R. 1553 was renamed the “Caroline Pryce Walker Conquer Childhood Cancer Act” after Representative Pryce’s daughter, who died in 1999 at age 9 of neuroblastoma, a type of nerve cancer.  The legislation would authorize the appropriation of $30 million for 5 fiscal years.

Status and Outlook

H.R. 1553was introduced by Representative Pryce on March 15, 2007, and was referred to the House Committee on Energy and Commerce.  On April 23, 2008, the House Energy and Commerce Subcommittee on Health reported out the bill with an amendment in the nature of a substitute.  On May 7, the full House Committee on Energy and Commerce ordered the bill to be reported out with an amendment in the nature of a substitute by a voice vote.  On June 12, the bill was passed by the House by a vote of 416 to 0.  No further action has occurred on this legislation. On July 16, the bill was passed by the Senate by unanimous consent.

S. 911was introduced by Senator Reed on March 19, 2007, and was referred to the Senate Committee on Health, Education, Labor and Pensions (HELP).  On November 14, the Senate HELP Committee ordered the bill to be reported out with an amendment in the nature of a substitute.  The bill was reported out (without a written report) on December 12 and placed on the legislative calendar under general orders.  No further action has occurred on this legislation.

June 2008