[House Report 110-706]
[From the U.S. Government Publishing Office]



110th Congress                                                   Report
                        HOUSE OF REPRESENTATIVES
 2d Session                                                     110-706

======================================================================
 
       CAROLINE PRYCE WALKER CONQUER CHILDHOOD CANCER ACT OF 2008

                                _______
                                

 June 10, 2008.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

 Mr. Dingell, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 1553]

      [Including cost estimate of the Congressional Budget Office]

  The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 1553) 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, 
having considered the same, report favorably thereon with 
amendments and recommend that the bill as amended do pass.

                                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

                               Amendments

  The amendments are as follows:
  Strike all after the enacting clause and insert the 
following:

SECTION 1. SHORT TITLE.

  This Act may be cited as the ``Caroline Pryce Walker Conquer 
Childhood Cancer Act of 2008''.

SEC. 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.

SEC. 3. PURPOSES.

  It is the purpose of this Act to authorize appropriations to--
          (1) encourage the support for pediatric cancer research and 
        other activities related to pediatric cancer;
          (2) establish a comprehensive national childhood cancer 
        registry; and
          (3) provide informational services to patients and families 
        affected by childhood cancer.

SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; NATIONAL CHILDHOOD 
                    CANCER REGISTRY.

  (a) 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 the following:

``SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARENESS.

  ``(a) Pediatric Cancer Research.--
          ``(1) Programs of research excellence in pediatric cancer.--
        The Secretary, in collaboration with the Director of 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 is encouraged to 
        take into consideration the application of such research and 
        other activities for minority, health disparity, and medically 
        underserved communities. For purposes of this section, the term 
        `pediatric cancer research' means research on the causes, 
        prevention, diagnosis, recognition, treatment, and long-term 
        effects of pediatric cancer.
          ``(2) Peer review requirements.--All grants awarded under 
        this subsection shall be awarded in accordance with section 
        492.
  ``(b) Public Awareness of Pediatric Cancers and Available Treatments 
and Research.--
          ``(1) In general.--The Secretary may award grants to 
        childhood cancer professional and direct service organizations 
        for the expansion and widespread implementation of--
                  ``(A) activities that provide available information 
                on treatment protocols to ensure early access to the 
                best available therapies and clinical trials for 
                pediatric cancers;
                  ``(B) 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
                  ``(C) 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 grants under this paragraph, the Secretary is 
        encouraged to take into consideration the extent to which an 
        entity would use such grant for purposes of making activities 
        and services described in this paragraph available to minority, 
        health disparity, and medically underserved communities.
          ``(2) Performance measurement, transparency, and 
        accountability.--For each grant awarded under this subsection, 
        the Secretary shall develop and implement metrics-based 
        performance measures to assess the effectiveness of activities 
        funded under such grant.
          ``(3) Informational requirements.--Any information made 
        available pursuant to a grant awarded under paragraph (1) shall 
        be--
                  ``(A) culturally and linguistically appropriate as 
                needed by patients and families affected by childhood 
                cancer; and
                  ``(B) approved by the Secretary.
  ``(c) Rule of Construction.--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).
  ``(d) Authorization of Appropriations.--For purposes of carrying out 
this section 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 in section 402A with 
respect to such purpose. Funds appropriated under this subsection shall 
remain available until expended.''.
  (b) National Childhood Cancer Registry.--Part M of title III of the 
Public Health Service Act (42 U.S.C. 280e et seq.) is amended--
          (1) by inserting after section 399E the following:

``SEC. 399E-1. NATIONAL CHILDHOOD CANCER REGISTRY.

  ``(a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, 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.
  ``(b) Informed Consent and Privacy Requirements and Coordination With 
Existing Programs.--The registry established pursuant to subsection (a) 
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.''; and
          (2) in section 399F(a), by inserting ``(other than section 
        399E-1)'' after ``this part''.

  Amend the title so as to read:

    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 information regarding 
pediatric cancers and current treatments for such cancers, 
establish a national childhood cancer registry, and promote 
public awareness of pediatric cancer.

                          Purpose and Summary

    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.

                  Background and Need for Legislation

    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.

                                Hearings

    No hearings were held in connection with H.R. 1553.

                        Committee Consideration

    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.

                            Committee Votes

    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.

                      Committee Oversight Findings

    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.

         Statement of General Performance Goals and Objectives

    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.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    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.

                  Earmarks and Tax and Tariff Benefits

    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.

                        Committee Cost Estimate

    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.

                  Congressional Budget Office Estimate

    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:

                                     U.S. Congress,
                               Congressional Budget Office,
                                      Washington, DC, May 20, 2008.
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).

----------------------------------------------------------------------------------------------------------------
                                                               By fiscal year, in millions of dollars--
                                                     -----------------------------------------------------------
                                                                                                          2009-
                                                        2009      2010      2011      2012      2013      2013
----------------------------------------------------------------------------------------------------------------
                                  CHANGES IN SPENDING SUBJECT TO APPROPRIATION

Authorization Level.................................        30        30        30        30        30       150
Estimated Outlays...................................         9        24        28        29        29       119
----------------------------------------------------------------------------------------------------------------

    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.

                      Federal Mandates Statement 

    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.

                      Advisory Committee Statement

    No advisory committees within the meaning of section 5(b) 
of the Federal Advisory Committee Act would be created by H.R. 
1553.

                   Constitutional Authority Statement

    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.

                  Applicability to Legislative Branch

    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-by-Section Analysis of the Legislation


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.

         Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (new matter is 
printed in italic and existing law in which no change is 
proposed is shown in roman):

PUBLIC HEALTH SERVICE ACT

           *       *       *       *       *       *       *



TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE

           *       *       *       *       *       *       *



Part M--National Program of Cancer Registries

           *       *       *       *       *       *       *



SEC. 399E-1. NATIONAL CHILDHOOD CANCER REGISTRY.

  (a) In General.--The Secretary, acting through the Director 
of the Centers for Disease Control and Prevention, 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.
  (b) Informed Consent and Privacy Requirements and 
Coordination with Existing Programs.--The registry established 
pursuant to subsection (a) 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.

SEC. 399F. AUTHORIZATION OF APPROPRIATIONS.

  (a) Registries.--For the purpose of carrying out this part 
(other than section 399E-1), there are authorized to be 
appropriated $30,000,000 for fiscal year 1994, and such sums as 
may be necessary for each of the fiscal years 1995 through 
2003. Of the amounts appropriated under the preceding sentence 
for any such fiscal year, the Secretary may obligate not more 
than 25 percent for carrying out section 399C, and not more 
than 10 percent may be expended for assessing the accuracy, 
completeness and quality of data collected, and not more than 
10 percent of which is to be expended under section 399D.

           *       *       *       *       *       *       *


TITLE IV--NATIONAL RESEARCH INSTITUTES

           *       *       *       *       *       *       *


  Part C--Specific Provisions Respecting National Research Institutes

Subpart 1--National Cancer Institute

           *       *       *       *       *       *       *


SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARENESS.

  (a) Pediatric Cancer Research.--
          (1) Programs of research excellence in pediatric 
        cancer.--The Secretary, in collaboration with the 
        Director of 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 is encouraged to take into 
        consideration the application of such research and 
        other activities for minority, health disparity, and 
        medically underserved communities. For purposes of this 
        section, the term ``pediatric cancer research'' means 
        research on the causes, prevention, diagnosis, 
        recognition, treatment, and long-term effects of 
        pediatric cancer.
          (2) Peer review requirements.--All grants awarded 
        under this subsection shall be awarded in accordance 
        with section 492.
  (b) Public Awareness of Pediatric Cancers and Available 
Treatments and Research.--
          (1) In general.--The Secretary may award grants to 
        childhood cancer professional and direct service 
        organizations for the expansion and widespread 
        implementation of--
                  (A) activities that provide available 
                information on treatment protocols to ensure 
                early access to the best available therapies 
                and clinical trials for pediatric cancers;
                  (B) 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
                  (C) 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 grants under this paragraph, the Secretary 
        is encouraged to take into consideration the extent to 
        which an entity would use such grant for purposes of 
        making activities and services described in this 
        paragraph available to minority, health disparity, and 
        medically underserved communities.
          (2) Performance measurement, transparency, and 
        accountability.--For each grant awarded under this 
        subsection, the Secretary shall develop and implement 
        metrics-based performance measures to assess the 
        effectiveness of activities funded under such grant.
          (3) Informational requirements.--Any information made 
        available pursuant to a grant awarded under paragraph 
        (1) shall be--
                  (A) culturally and linguistically appropriate 
                as needed by patients and families affected by 
                childhood cancer; and
                  (B) approved by the Secretary.
  (c) Rule of Construction.--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).
  (d) Authorization of Appropriations.--For purposes of 
carrying out this section 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 in section 402A with respect to such purpose. Funds 
appropriated under this subsection shall remain available until 
expended.

           *       *       *       *       *       *       *


                                  
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