[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4450 Introduced in House (IH)]
110th CONGRESS
1st Session
H. R. 4450
To improve and enhance research and programs on cancer survivorship,
and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
December 11, 2007
Ms. Solis (for herself and Mrs. Bono) introduced the following bill;
which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To improve and enhance research and programs on cancer survivorship,
and for other purposes.
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 ``Pediatric, Adolescent, and Young
Adult Cancer Survivorship Research and Quality of Life Act of 2007.''
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) There are almost 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
almost $190,000,000,000 in direct and indirect costs.
(15) In fiscal year 2001, the National Institutes of Health
invested $38,000,000 in survivorship, or less than $4.25 per
survivor.
SEC. 3. CDC CANCER CONTROL PROGRAMS.
Part 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:
``SEC. 317T. CANCER CONTROL PROGRAMS.
``(a) In General.--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) Certain Activities.--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 survivorship.--In
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) Reliance on guidelines.--In carrying out this
subsection, the Secretary shall rely, where appropriate, on
existing guidelines for care of childhood cancer survivors.''.
SEC. 4. NIH CANCER SURVIVORSHIP PROGRAMS.
(a) Technical Amendment.--
(1) In general.--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) Effective date.--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 Programs.--Subpart 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:
``SEC. 417E. EXPANSION OF CANCER SURVIVORSHIP ACTIVITIES.
``(a) Expansion of Activities.--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) Priority Areas.--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) Grants.--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) Balanced approach.--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) Health disparities.--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
Survivors.--The 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.
``SEC. 417E-1. IMPROVING THE QUALITY OF FOLLOW-UP CARE FOR SURVIVORS OF
CHILDHOOD, ADOLESCENT, AND YOUNG ADULT CANCERS AND THEIR
FAMILIES.
``(a) In General.--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) Eligible Entities.--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) Duration.--Each grant under this section shall be for a
period of 2 years.
``(d) Authorization of Appropriations.--To carry out this section,
there are authorized to be appropriated $5,000,000 for each of fiscal
years 2009 through 2013.
``SEC. 417E-2. STUDY OF PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS OF
CARE.
``(a) In General.--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) Eligible Entities.--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) Use of Funds.--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 Appropriations.--To carry out this section,
there are authorized to be appropriated $8,000,000 for each of fiscal
years 2009 through 2013.''.
SEC. 5. CLINICS FOR COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR
CHILDHOOD CANCER SURVIVORS.
Part 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:
``SEC. 317U. CLINICS FOR COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR
CHILDHOOD CANCER SURVIVORS.
``(a) In General.--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) Eligible Entities.--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) Priority.--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) Use of Funds.--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 Appropriations.--To carry out this section,
there is authorized to be appropriated $12,000,000 for each of fiscal
years 2009 through 2013.''.
SEC. 6. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILDHOOD CANCER
SURVIVORS.
Part 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:
``SEC. 317V. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILDHOOD CANCER
SURVIVORS.
``(a) Grants.--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) Use of Funds.--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 Appropriations.--To carry out this section,
there are authorized to be appropriated $5,000,000 for each of fiscal
years 2009 through 2013.''.
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