[110th Congress Public Law 285]
[From the U.S. Government Printing Office]
[DOCID: f:publ285.110]
[[Page 2627]]
CAROLINE PRYCE WALKER CONQUER CHILDHOOD CANCER ACT OF 2008
[[Page 122 STAT. 2628]]
Public Law 110-285
110th Congress
An Act
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. <<NOTE: July 29,
2008 - [H.R. 1553]>>
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress <<NOTE: Caroline Pryce Walker
Conquer Childhood Cancer Act of 2008. 42 USC 201 note.>> assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Caroline Pryce Walker Conquer
Childhood Cancer Act of 2008''.
SEC. 2. <<NOTE: 42 USC 280e-3a note.>> 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. <<NOTE: 42 USC 280e-3a note.>> PURPOSES.
It is the purpose of this Act to authorize appropriations to--
[[Page 122 STAT. 2629]]
(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. <<NOTE: 42 USC 285a-11.>> 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.
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``(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. <<NOTE: 42 USC 280e-3a.>> NATIONAL CHILDHOOD
CANCER REGISTRY.
``(a) In General.--The <<NOTE: Grants.>> 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
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(2) in section 399F(a), <<NOTE: 42 USC 280e-4.>> by
inserting ``(other than section 399E-1)'' after ``this part''.
Approved July 29, 2008.
LEGISLATIVE HISTORY--H.R. 1553 (S. 911):
---------------------------------------------------------------------------
HOUSE REPORTS: No. 110-706 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD, Vol. 154 (2008):
June 11, 12, considered and passed House.
July 16, considered and passed Senate.
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