1.This Act may be cited as the
Pediatric, Adolescent, and Young Adult
Cancer Survivorship Research and Quality of Life Act of
2008.
2.The Congress finds as follows:
(1)There are more
than 10,000,000 cancer survivors (those living with, through, and beyond
cancer) in the United States.
(2)Three out of every
four American families will have at least one family member diagnosed with
cancer.
(3)The size of the
population of survivors of childhood cancers has grown dramatically, to 270,000
individuals of all ages as of 1997.
(4)In 1960, only 4
percent of children with cancer survived more than 5 years, but treatment
advances have changed the outlook for many children diagnosed with
cancer.
(5)According to the Intercultural Cancer
Council, because of disparities in health care delivery throughout the cancer
care continuum—from prevention, screening, and diagnosis through cancer
treatment, follow-up, and end-of-life care—minority, poor, and other medically
underserved communities are more likely to be diagnosed with late stage
disease, experience poorer treatment outcomes, have shorter survival time with
less quality of life, and experience a substantially greater likelihood of
cancer death.
(6)The Institute of Medicine, in its report
entitled From Cancer Patient to Cancer Survivor: Lost in
Transition
, states that there are disparities in cancer survivorship.
For instance, African-Americans are underrepresented in the cancer survivor
population—they made up approximately 13 percent of the United States
population in 2000, but only 8 percent of the survivor population.
(7)The 5-year survival
rate for children with cancer improved from 56 percent for those diagnosed
between 1974 and 1976 to 79 percent for those diagnosed between 1995 and
2000.
(8)One in 640 adults
from age 20 to 39 has a history of cancer.
(9)As many as
two-thirds of childhood cancer survivors are likely to experience at least one
late effect of treatment, with as many as one-fourth experiencing a late effect
that is serious or life-threatening. The most common late effects of childhood
cancer are neurocognitive and psychological, cardiopulmonary, endocrine and
musculoskeletal, and second malignancies.
(10)Some late effects
are identified early in follow-up and are easily resolved, while others may
become chronic problems in adulthood and may have serious consequences.
(11)The late effects
of treatment may change as treatments evolve, which means that the monitoring
and treatment of late effects may need to be modified on a routine
basis.
(12)The Institute of
Medicine, in its reports on cancer survivorship entitled Childhood
Cancer Survivorship: Improving Care and Quality of Life
and From
Cancer Patient to Cancer Survivor: Lost in Transition
, has offered a
number of recommendations for improving monitoring and follow-up care for
cancer survivors and enhancing the cancer survivorship research agenda.
(13)The Institute of
Medicine has also noted the significant health insurance problems that may be
experienced by survivors of childhood cancer as well as adult cancer survivors
and has recommended that policy makers take action to ensure access to care,
including appropriate follow-up care, by all cancer survivors.
(14)The annual cost
of cancer in the United States is more than $190,000,000,000 in direct and
indirect costs.
3.CDC Cancer
Control ProgramsPart B of
title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended
by inserting after section 317S the following:
317T.
(a)The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, shall expand and intensify the cancer
control programs of the Centers, including programs for conducting surveillance
activities or supporting State comprehensive cancer control plans.
(b)In carrying out subsection (a), the Secretary
shall—
(1)in collaboration with the Director of the
National Cancer Institute, provide guidance to States on projects and
interventions that may be incorporated into State comprehensive cancer control
programs to improve the long-term health status of childhood cancer survivors,
including childhood cancer survivors in minority and other medically
underserved populations;
(2)encourage States
to incorporate strategies for improving systems of care for childhood cancer
survivors and their families into State comprehensive cancer plans; and
(3)collaborate with
the Director of the National Cancer Institute to improve existing surveillance
systems or develop appropriate new systems for tracking cancer survivors and
assessing their health status and risk for other chronic and disabling
conditions.
(c)Childhood cancer
survivorship
(1)Focus on
childhood cancer survivorshipIn conducting or supporting
national, State, and local comprehensive cancer control programs through the
Centers for Disease Control and Prevention, the Secretary shall enhance such
programs—
(A)to include a focus
on childhood cancer survivorship, including survivorship in minority and other
medically underserved populations; and
(B)to include
childhood cancer survivorship initiatives for improving—
(i)the monitoring of
survivors of all forms of cancer; and
(ii)follow-up
treatment for survivors.
(2)In carrying out this subsection, the Secretary shall
rely, where appropriate, on existing guidelines for care of childhood cancer
survivors.
.
4.NIH cancer
survivorship programs
(a)
(1)Section 3 of the Hematological Cancer Research Investment
and Education Act of 2002 (Public Law 107–172; 116 Stat. 541) is amended by
striking section 419C
and inserting section
417C
.
(2)The amendment made by paragraph (1) shall take effect as if
included in section 3 of the Hematological Cancer Research Investment and
Education Act of 2002 (Public Law 107–172; 116 Stat. 541).
(b)Cancer
survivorship programsSubpart 1 of part C of title IV of the
Public Health Service Act (42 U.S.C. 285 et seq.), as amended by subsection
(a), is amended by adding at the end the following:
417E.Expansion of
cancer survivorship activities
(a)The Director of the Institute shall coordinate the
activities of the National Institutes of Health with respect to cancer
survivorship, including childhood cancer survivorship.
(b)In carrying out subsection (a), the Director of the
Institute shall give priority to the following:
(1)Comprehensive
assessment of the prevalence and etiology of late effects of cancer and its
treatment, including physical, neurocognitive, and psychosocial late effects.
Such assessment shall include—
(A)development of a
system for patient tracking and analysis;
(B)establishment of a
system of tissue collection, banking, and analysis for childhood cancers, using
guidelines from the Office of Biorepositories and Biospecimen Research;
and
(C)coordination of,
and resources for, assessment and data collection.
(2)Identification of
risk and protective factors related to the development of late effects of
cancer.
(3)Identification of
predictors of neurocognitive and psychosocial outcomes, including quality of
life, in cancer survivors and identification of qualify of life and other
outcomes in family members.
(4)Development and
implementation of intervention studies for patients and families, including
studies focusing on—
(A)preventive
interventions during treatment;
(B)interventions to
lessen the impact of late effects;
(C)rehabilitative or
remediative interventions;
(D)interventions to
promote health behaviors in long-term survivors; and
(E)interventions to
improve health care utilization and access to linguistically and culturally
competent long-term follow-up care for childhood cancer survivors in minority
and other medically underserved populations.
(c)Grants for
research on causes of health disparities in childhood cancer
survivorship
(1)The
Director of NIH, acting through the Director of the Institute, shall make
grants to entities to conduct research relating to—
(A)pediatric cancer
survivors within minority populations; and
(B)health disparities
in cancer survivorship outcomes within minority or other medically underserved
populations.
(2)In making grants for research under paragraph (1)(A) on
pediatric cancer survivors within minority populations, the Director of NIH
shall ensure that such research addresses both the physical and the
psychological needs of such survivors.
(3)In making grants for research under paragraph (1)(B)
on health disparities in cancer survivorship outcomes within minority
populations, the Director of NIH shall ensure that such research examines each
of the following:
(A)Key adverse events
after childhood cancer.
(B)Assessment of
health and quality of life in childhood cancer survivors.
(C)Barriers to
follow-up care to childhood cancer survivors.
(d)Research To
evaluate follow-up care for childhood cancer survivorsThe
Director of NIH shall conduct or support research to evaluate systems of
follow-up care for childhood cancer survivors, with special emphasis given
to—
(1)transitions in
care for childhood cancer survivors;
(2)those
professionals who should be part of care teams for childhood cancer
survivors;
(3)training of
professionals to provide linguistically and culturally competent follow-up care
to childhood cancer survivors; and
(4)different models of
follow-up care.
417E–1. Improving
the quality of follow-up care for survivors of childhood, adolescent, and young
adult cancers and their families
(a)The Secretary, in consultation with the Director of NIH,
shall make grants to eligible entities to establish or improve training
programs for health care professionals (including physicians, nurses, physician
assistants, and mental health professionals)—
(1)to improve the
quality of immediate and long-term follow-up care for survivors of childhood,
adolescent, and young adult cancers and their families; and
(2)to ensure that
such care is linguistically and culturally competent.
(b)In this section, the term eligible entity
means—
(1)a medical
school;
(2)a children’s
hospital;
(3)a cancer
center;
(4)a hospital with
one or more residency programs that serve a significant number of pediatric
cancer patients;
(5)a graduate
training program for health professionals described in subsection (a) who will
treat survivors of childhood, adolescent, and young adult cancers; or
(6)any other entity
with significant experience and expertise in treating survivors of childhood,
adolescent, and young adult cancers.
(c)Each
grant under this section shall be for a period of 2 years.
(d)Authorization of
appropriationsTo carry out this section, there are authorized to
be appropriated $5,000,000 for each of fiscal years 2009 through 2013.
417E–2.Study of
pilot programs to explore model systems of care
(a)The Director of NIH,
in consultation with the Administrator of the Health Resources and Services
Administration, shall make grants to eligible entities to establish pilot
programs to develop, study, or evaluate model systems for monitoring and caring
for cancer survivors.
(b)In this section, the term eligible entity
means—
(1)a medical
school;
(2)a children’s
hospital;
(3)a cancer center;
or
(4)any other entity
with significant experience and expertise in treating survivors of childhood,
adolescent, and young adult cancers.
(c)The Director of NIH may
make a grant under this section to an eligible entity only if the entity
agrees—
(1)to use the grant
to establish a pilot program to develop, study, or evaluate one or more model
systems for monitoring and caring for cancer survivors; and
(2)in developing,
studying, and evaluating such systems, to give special emphasis to the
following:
(A)Design of protocols
for follow-up care, monitoring, and other survivorship programs (including peer
support and mentoring programs).
(B)Dissemination of
information to health care providers about how to provide linguistically and
culturally competent follow-up care and monitoring to cancer survivors and
their families.
(C)Dissemination of
other information, as appropriate, to health care providers and to cancer
survivors and their families.
(D)Development of
support programs to improve the quality of life of cancer survivors.
(E)Design of systems
for the effective transfer of treatment information from cancer care providers
to other health care providers (including family practice physicians and
internists) and to cancer survivors and their families, where
appropriate.
(F)Development of
various models for providing multidisciplinary care.
(d)Authorization of
appropriationsTo carry out this section, there are authorized to
be appropriated $8,000,000 for each of fiscal years 2009 through
2013.
.
5.Clinics for
comprehensive long-term follow-up services for childhood cancer
survivorsPart B of title III
of the Public Health Service Act (42 U.S.C. 243 et seq.), as amended by section
3, is amended by inserting after section 317T the following:
317U.Clinics for
comprehensive long-term follow-up services for childhood cancer
survivors
(a)The Secretary shall make grants to eligible entities to
pay all or a portion of the costs incurred during the first 4 years of
establishing and operating a clinic for comprehensive long-term follow-up
services for childhood cancer survivors.
(b)In this section, the term eligible entity
means—
(1)a school of
medicine;
(2)a children’s
hospital;
(3)a cancer center;
or
(4)any other entity
with significant experience and expertise in treating surviving childhood,
adolescent, and young adult cancers.
(c)In
making grants under this section, the Secretary shall give priority to any
eligible entity that demonstrates an expertise in improving access to care for
minority and other medically underserved populations.
(d)The Secretary may make
a grant under this section to an eligible entity only if the entity agrees to
use the grant to pay costs incurred during the first 4 years of establishing
and operating a clinic for comprehensive long-term follow-up services for
childhood cancer survivors. Such costs may include the costs of—
(1)purchasing or
leasing facilities;
(2)providing medical
and psychosocial follow-up services, including coordination with the patient’s
primary care provider and oncologist in order to ensure that the unique medical
needs of survivors are addressed;
(3)conducting
research to improve care for cancer survivors;
(4)providing
linguistically and culturally competent information to survivors and their
families; and
(5)improving access
by minority or other medically underserved populations to the best practices
and care for childhood cancer survivors.
(e)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated $12,000,000 for each of fiscal years 2009 through
2013.
.
6.Grants to improve
access to care for childhood cancer survivorsPart B of title III of the Public Health
Service Act (42 U.S.C. 243 et seq.), as amended by section 5, is amended by
inserting after section 317U the following:
317V.Grants to
improve access to care for childhood cancer survivors
(a)The Secretary shall make grants to
recognized childhood cancer professional and advocacy organizations to improve
physical and psychosocial care for childhood cancer survivors, especially
childhood cancer survivors in minority or other medically underserved
populations.
(b)The Secretary may make
a grant under this section to an organization only if the organization agrees
to use the grant to improve physical and psychosocial care for childhood cancer
survivors, especially childhood cancer survivors in minority or other medically
underserved populations. Such care may include—
(1)patient navigator
programs;
(2)peer support
programs;
(3)education and
outreach for survivors and their families, including developing bilingual
materials;
(4)follow-up care for
uninsured and underinsured survivors—
(A)to identify,
prevent, or control side effects associated with cancer and its treatment;
and
(B)to screen for
cancer recurrence; and
(5)assistance with
transportation necessary to receive medical care for survivors and their
families who lack adequate transportation resources.
(c)Authorization of
appropriationsTo carry out this section, there are authorized to
be appropriated $5,000,000 for each of fiscal years 2009 through
2013.
.