1.This Act may be cited as the
Conquer Childhood Cancer Act of
2007
.
2.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.
3.It is the purpose of this Act to authorize
appropriations to—
(1)encourage and
expand the support for biomedical research programs of the existing National
Cancer Institute-designated multicenter national infrastructure for pediatric
cancer research;
(2)establish a
population-based national childhood cancer database (the Children's Cancer
Research Network) to evaluate incidence trends of childhood cancers and to
enable the investigations of genetic epidemiology in order to identify causes
to aid in development of prevention strategies;
(3)provide
informational services to patients and families affected by childhood
cancer;
(4)support the
development, construction, and operation of a comprehensive online public
information system on childhood cancers and services available to families;
and
(5)establish a
fellowship program in pediatric cancer research to foster clinical and
translational research career development in pediatric oncologists in the early
stages of their career.
4.Pediatric cancer
research and awarenessSubpart
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:
417E.Pediatric
cancer research and awareness
(a)Pediatric cancer
research
(1)Special programs
of research excellence in pediatric cancersThe Director of NIH,
acting through the National Cancer Institute, shall establish special programs
of research excellence in the area of pediatric cancers. Such programs shall
demonstrate a balanced approach to research cause, prognosis, prevention,
diagnosis, and treatment of pediatric cancers that foster translation of basic
research findings into innovative interventions applied to patients.
(2)Fellowship of
excellence in pediatric cancer researchThe Secretary shall
develop a grant mechanism for the establishment, in cooperation with the
National Cancer Institute-supported pediatric cancer clinical trial groups, of
Research Fellowships in Pediatric Cancer to support adequate numbers of
pediatric focused clinical and translational investigators thereby facilitating
continuous momentum of research excellence.
(b)National
Childhood Cancer RegistryThe Director of NIH shall award a grant
for the operation of a population-based national childhood cancer database, the
Childhood Cancer Research Network (CCRN), of the Children’s Oncology Group, in
cooperation with the National Cancer Institute.
(c)Public awareness
of pediatric cancers and available treatments and researchThe
Secretary shall award grants to recognized childhood cancer professional and
advocacy organizations for the expansion and widespread implementation of
activities to raise public awareness of currently available information,
treatment, and research with the intent to ensure access to best available
therapies for pediatric cancers.
(d)Authorization of
appropriationsThere are authorized to be appropriated to carry
out this section, $30,000,000 for each of fiscal years 2008 through 2012. Funds
appropriated under this section shall remain available until
expended.
.
1.This Act may be cited as the
Conquer Childhood Cancer Act of
2007
.
2.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 1 of the more than 200
Children's Oncology Group member institutions throughout the United
States.
3.Pediatric cancer
research and awareness; national childhood cancer registry
(a)Pediatric cancer
research and awarenessSubpart 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:
417E.Pediatric cancer
research and awareness
(a)Pediatric cancer
research
(1)Programs of research
excellence in pediatric cancerThe Secretary, acting through the
Director of NIH, in collaboration with other Federal agencies with interest in
prevention and treatment of pediatric cancer, shall enhance, expand, and
intensify pediatric cancer research, 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. 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)Fellowship of
excellence in pediatric cancer researchThe Secretary, acting
through the Director of NIH, shall award grants to enhance and expand cancer
research fellowships to train and develop clinical investigators focused on
pediatric cancer research.
(3)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)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.
(2)Performance
measurement, transparency, and accountabilityFor 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.
(c)Authorization of
appropriationsFor purposes of carrying out this section and
section 399E–1, there are authorized to be appropriated $30,000,000 for each of
fiscal years 2008 through 2012. 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 registryPart 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:
399E–1.National Childhood
Cancer Registry
(a)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 programsThe
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 Federal
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
.
December 12, 2007
Reported with an amendment