[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.
* * * * * * *