69-006
2d Session
110-706
--CAROLINE PRYCE WALKER CONQUER CHILDHOOD CANCER ACT OF 2008
[To accompany H.R. 1553]
[Including cost estimate of the Congressional Budget Office]
| CONTENTS | Page | |
| Amendments | 2 | |
| Purpose and Summary | 3 | |
| Background and Need for Legislation | 4 | |
| Hearings | 4 | |
| Committee Consideration | 4 | |
| Committee Votes | 4 | |
| Committee Oversight Findings | 4 | |
| Statement of General Performance Goals and Objectives | 5 | |
| New Budget Authority, Entitlement Authority, and Tax Expenditures | 5 | |
| Earmarks and Tax and Tariff Benefits | 5 | |
| Committee Cost Estimate | 5 | |
| Congressional Budget Office Estimate | 5 | |
| Federal Mandates Statement | 7 | |
| Advisory Committee Statement | 7 | |
| Constitutional Authority Statement | 7 | |
| Applicability to Legislative Branch | 7 | |
| Section-by-Section Analysis of the Legislation | 7 | |
| Changes in Existing Law Made by the Bill, as Reported | 9 |
The purpose of H.R. 1553, the `Caroline Pryce Walker Conquer Childhood Cancer Act of 2008', is to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to information regarding pediatric cancers and current treatments for such cancers, establish a national childhood cancer registry, and promote public awareness of pediatric cancers.
Between infancy and 15 years of age, cancer is the leading cause of death by disease among U.S. children. In 2007, approximately 10,400 new cases of pediatric cancer were diagnosed in children ages 0 to 14 years. Although the incidence of invasive cancer in children has increased slightly over the past 30 years, mortality has declined dramatically for many childhood cancers. The combined 5-year survival rate for all childhood cancers has improved from less than 50 percent before the 1970s to nearly 80 percent today, and the 10-year survival rate is greater than 75 percent.
Despite these advances, treatments for some childhood cancers, including brain tumors and neuroblastoma, are inadequate. Two-thirds of children who are successfully treated experience serious and long-term effects from treatment. Negative effects resulting from current pediatric cancer therapies indicate a need to strengthen Federal support for activities leading to an enhanced understanding of childhood cancers and treatments that are less toxic and more effective.
H.R. 1553 would strengthen Federal investment in pediatric cancer research by advancing medical research and treatments into pediatric cancers, ensuring patients and families have access to current treatments and information regarding pediatric cancers, and promoting public awareness of pediatric cancers.
No hearings were held in connection with H.R. 1553.
On Wednesday, April 23, 2008, the Subcommittee on Health met in open markup session and favorably forwarded H.R. 1553, amended, to the full Committee for consideration by a voice vote. On Wednesday, May 7, 2008, the full Committee met in open markup session and ordered H.R. 1553 favorably reported to the House, amended, by a voice vote.
Clause 3(b) of rule XIII of the Rules of the House of Representatives requires the Committee to list the record votes on the motion to report legislation and amendments thereto. No record votes were taken on amendments or in connection with ordering H.R. 1553 reported to the House. A motion by Mr. Dingell to order H.R. 1553 favorably reported to the House, amended, was agreed to by a voice vote.
Regarding clause 3(c)(1) of rule XIII of the Rules of the House of Representatives, the oversight findings of the Committee regarding H.R. 1553 are reflected in this report.
The objective of H.R. 1553 is to amend the Public Health Service Act to encourage the Secretary of the Department of Health and Human Services (HHS), in collaboration with the Director of the National Institutes of Health (NIH) and other Federal agencies to continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer. In doing so, the Secretary of HHS is encouraged to take into consideration the application of such research and other activities for minority, health disparity, and medically underserved communities.
Regarding compliance with clause 3(c)(2) of rule XIII of the Rules of the House of Representatives, the Committee finds that H.R. 1553 would result in no new or increased budget authority, entitlement authority, or tax expenditures or revenues.
Regarding compliance with clause 9 of rule XXI of the Rules of the House of Representatives, H.R. 1553 does not contain any congressional earmarks, limited tax benefits, or limited tariff benefits as defined in clause 9(d), 9(e), or 9(f) of rule XXI.
The Committee adopts as its own the cost estimate on H.R. 1553 prepared by the Director of the Congressional Budget Office pursuant to section 402 of the Congressional Budget Act of 1974.
Pursuant to clause 3(c)(3) of rule XIII of the Rules of the House of Representatives, the following is the cost estimate on H.R. 1553 provided by the Congressional Budget Office pursuant to section 402 of the Congressional Budget Act of 1974:
Hon. JOHN D. DINGELL,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
DEAR MR. CHAIRMAN: The Congressional Budget Office has prepared the enclosed cost estimate for H.R. 1553, the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.
If you wish further details on this estimate, we will be pleased to provide them. The CBO staff contact is Sarah Evans.
Sincerely,
PETER R. ORSZAG.
Enclosure.
H.R. 1553--Caroline Pryce Walker Conquer Childhood Cancer Act of 2008
Summary: H.R. 1553 would amend the Public Health Service (PHS) Act to instruct the Director of the National Institutes of Health (NIH) to enhance, expand, and intensify research to generate effective treatments for pediatric cancer. The bill would authorize the Secretary of Health and Human Services (HHS) to award grants to professional and direct-service organizations to increase public awareness of treatments and support networks available for pediatric cancer patients and their families. H.R. 1553 also would require the Director of the Centers for Disease Control and Prevention (CDC) to create a registry to enhance epidemiological research on pediatric cancer.
H.R. 1553 would authorize the appropriation of $30 million a year for fiscal years 2009 through 2013. CBO estimates that implementing the bill would cost $119 million over the 2009-2013 period, assuming the appropriation of the specified amounts. Enacting H.R. 1553 would have no effect on direct spending or revenues.
The bill contains no private-sector or intergovernmental mandates as defined in the Unfunded Mandates Reform Act (UMRA) and would impose no costs on state, local, or tribal governments.
Estimated cost to the Federal Government: The estimated budgetary impact of H.R. 1553 is shown in the following table. The costs of this legislation fall within budget function 550 (health).
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By fiscal year, in millions of dollars--
2009 2010 2011 2012 2013 2009-2013
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CHANGES IN SPENDING SUBJECT TO APPROPRIATION
Authorization Level 30 30 30 30 30 150
Estimated Outlays 9 24 28 29 29 119
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Basis of estimate: H.R. 1553 would authorize the appropriation of $30 million for each of fiscal years 2009 through 2013. For this estimate, CBO assumes that H.R. 1553 will be enacted near the start of fiscal year 2009 and that the authorized amounts will be appropriated for each year. Using historical patterns of spending for similar programs, CBO estimates that implementing H.R. 1553 would cost $119 million over the 2009-2013 period.
H.R. 1553 would instruct the Secretary of HHS, acting through the Director of NIH, to collaborate with other federal agencies to enhance, expand, and intensify their research to generate effective treatments for pediatric cancers. The Secretary would be authorized to award grants to professional and direct-service organizations to expand activities that increase awareness of treatments, long-term effects of pediatric cancer, and support networks for patients and parents. H.R. 1553 also would direct the Secretary of HHS, acting through the Director of the CDC, to award a grant to create a national registry of cases of pediatric cancer that could be used for epidemiological studies.
The National Cancer Institute (NCI), which supports the majority of pediatric cancer activities at the NIH, spent $173 million on childhood cancer activities in fiscal year 2007. Over the past few years, childhood cancer activities at NCI have included: research on the causes, diagnosis, treatment, and prevention of childhood cancers; a national campaign to increase understanding of childhood cancer; and a study of the feasibility of establishing a Childhood Cancer Research Network to develop a national registry of childhood cancers.
Intergovernmental and private-sector impact: H.R. 1553 contains no private-sector intergovernmental mandates as defined in UMRA and would impose no costs on state, local, or tribal governments.
Previous estimate: On December 19, 2007, CBO transmitted an estimate for S. 911, the Conquer Childhood Cancer Act of 2007, as reported by the Senate Committee on Health, Education, Labor, and Pensions on December 12, 2007. H.R. 1553 is very similar to S. 911. The major difference between the bills is that H.R. 1553 would require an increased focus on health disparity issues that was not explicitly required in S. 911. CBO does not estimate any impact on costs from this change. The slight change in CBO's estimate for H.R. 1553 reflects updated historical information on spending for cancer research and outreach activities at NIH.
Estimate prepared by: Federal costs: Sarah Evans and Tim Gronniger; Impact on state, local and tribal governments: Lisa Ramirez-Branum; Impact on the private sector: Patrick Bernhardt.
Estimate approved by: Keith J. Fontenot, Deputy Assistant Director for Health and Human Resources, Budget Analysis Division.
The Committee adopts as its own the estimate of Federal mandates regarding H.R. 1553 prepared by the Director of the Congressional Budget Office pursuant to section 423 of the Unfunded Mandates Reform Act.
No advisory committees within the meaning of section 5(b) of the Federal Advisory Committee Act would be created by H.R. 1553.
Pursuant to clause 3(d)(1) of rule XIII of the Rules of the House of Representatives, the Committee finds that the Constitutional authority for H.R. 1553 is provided in the provisions of Article I, section 8, clause 1, that relate to expending funds to provide for the general welfare of the United States.
The Committee finds that H.R. 1553 does not relate to the terms and conditions of employment or access to public services or accommodations within the meaning of section 102(b)(3) of the Congressional Accountability Act of 1995.
Section 1. Short title
Section 1 establishes the short title of the Act as the `Caroline Pryce Walker Conquer Childhood Cancer Act of 2008'.
Section 2. Findings
Section 2 lists the findings.
Section 3. Purposes
Section 3 states that the purposes of the legislation include: (1) Encouraging support for pediatric cancer research and other activities related to pediatric cancer; (2) establishing a comprehensive national childhood cancer registry; and (3) providing informational services to patients and families affected by childhood cancer.
Section 4. Pediatric cancer research and awareness; national childhood cancer registry
Section 4 amends Subpart 1 of part C of title IV of the Public Health Service Act (42 U.S.C. 285 et seq.) by inserting a new section 417E, which states that the Secretary of HHS, in collaboration with the Director of the NIH and other Federal agencies with interest in prevention and treatment of pediatric cancer, shall continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric preclinical testing, and pediatric clinical trials through National Cancer Institute-supported pediatric cancer clinical trial groups and their member institutions. In enhancing, expanding, and intensifying such research and other activities, the Secretary of HHS is encouraged to take into consideration the application of such research and other activities for minority, health disparity, and medically underserved communities. All grants awarded under this section shall be awarded in accordance with section 492.
Section 4 also states that the Secretary of HHS may award grants to childhood cancer professional and direct service organizations for the expansion and widespread implementation of: (1) Activities that provide available information on treatment protocols to ensure early access to the best available therapies and clinical trials for pediatric cancers; (2) activities that provide available information on the late effects of pediatric cancer treatment to ensure access to necessary long-term medical and psychological care; and (3) direct resource services, such as educational outreach for parents, peer-to-peer and parent-to-parent support networks, information on school re-entry and postsecondary education, and resource directories or referral services for financial assistance, psychological counseling, and other support services. In awarding these grants, the Secretary of HHS is encouraged to take into consideration the extent to which an entity would use such grant for purposes of making activities and services available to minority, health disparity, and medically underserved communities. For each grant awarded under this subsection, the Secretary of HHS shall develop and implement metrics-based performance measures to assess the effectiveness of activities funded under such grant.
Section 4 states that any information made available pursuant to a grant awarded in this section shall be approved by the Secretary of HHS and must be culturally and linguistically appropriate as needed by patients and families affected by childhood cancer.
Section 4 states that nothing in this section shall be construed as being inconsistent with the goals and purposes of the Minority Health and Health Disparities Research and Education Act of 2000 (42 U.S.C. 202 note).
For purposes of carrying out section 4 and section 399E-1, there are authorized to be appropriated $30,000,000 for each of fiscal years 2009 through 2013. Such authorization of appropriations is in addition to the authorization of appropriations established under section 402A with respect to such purposes. Funds appropriated under this subsection shall remain available until expended.
Section 4 amends Part M of title III of the Public Health Service Act (42 U.S.C. 280e et seq.) by inserting a new section 399E-1, which states that the Secretary of HHS, acting through the Director of the CDC, shall award a grant to enhance and expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences of pediatric cancer. Such registry shall be updated to include an actual occurrence within weeks of the date of such occurrence. This registry shall be subject to section 552a of title 5, United States Code, the regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996, applicable Federal and State informed consent regulations, any other applicable Federal and State laws relating to the privacy of patient information, and section 399B(d)(4) of this Act.
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