[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1553 Engrossed in House (EH)]
110th CONGRESS
2d Session
H. R. 1553
_______________________________________________________________________
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.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
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''.
Passed the House of Representatives June 12, 2008.
Attest:
Clerk.
110th CONGRESS
2d Session
H. R. 1553
_______________________________________________________________________
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.