[Congressional Record Volume 162, Number 175 (Tuesday, December 6, 2016)]
[House]
[Pages H7193-H7198]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CHILDHOOD CANCER SURVIVORSHIP, TREATMENT, ACCESS, AND RESEARCH ACT OF
2016
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 3381) to maximize discovery, and accelerate development and
availability, of promising childhood cancer treatments, and for other
purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 3381
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Childhood
Cancer Survivorship, Treatment, Access, and Research Act of
2016'' or the ``Childhood Cancer STAR Act''.
(b) Table of Contents.--The table of contents for this Act
is as follows:
Sec. 1. Short title; table of contents.
Sec. 2. Findings.
TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY
Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer
Reauthorization Act
Sec. 101. Children's cancer biorepositories and biospecimen research.
Sec. 102. Improving Childhood Cancer Surveillance.
Subtitle B--Pediatric Expertise at NIH
Sec. 111. Inclusion of at least one pediatric oncologist on the
National Cancer Advisory Board.
Sec. 112. Sense of Congress regarding pediatric expertise at the
National Cancer Institute.
Subtitle C--NIH Report on Childhood Cancer Activities
Sec. 121. Reporting on childhood cancer research projects.
TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND
CAREGIVER SUPPORT
Subtitle A--Childhood Cancer Survivors' Quality of Life Act
Sec. 201. Cancer survivorship programs.
Sec. 202. Grants to improve care for pediatric cancer survivors.
Sec. 203. Comprehensive long-term follow-up services for pediatric
cancer survivors.
Sec. 204. Survivorship demonstration project.
Subtitle B--Coverage and Payment of High Quality Care
Sec. 211. Report by the Comptroller General.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Each year in the United States there are an estimated
15,780 children between birth and the age of 19 diagnosed
with cancer. Approximately 1 in 285 children in the United
States will be diagnosed with cancer before their 20th
birthday.
(2) In 1960, only 4 percent of children with cancer
survived more than 5 years, but today, cure rates have
increased to over 80 percent for children and adolescents
under age 20.
(3) While the cure rates for some childhood cancers are now
over 80 percent, the survival rates for many types of cancers
in children remain extremely low.
(4) According to the Centers for Disease Control and
Prevention, cancer continues to be the leading cause of death
by disease in children and adolescents under the age of 14.
(5) By 2020, the population of childhood cancers survivors
is expected to be 500,000 individuals.
(6) 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. Common late effects of childhood
cancer are neurocognitive, psychological, cardiopulmonary,
endocrine, and musculoskeletal effects, secondary
malignancies, and early death.
(7) As a result of disparities in the delivery of cancer
care, minority, low-income, and other medically underserved
children 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.
(8) Collection of biospecimens, along with clinical and
outcome data, on children and adolescents with cancer in the
United States is necessary to improve childhood and
adolescent cancer treatments and cures. Currently
biospecimens, and clinical and outcome data, are collected
for less than half of children in the United States with
cancer.
(9) The late effects of cancer treatment may change as
therapies evolve, which means that the monitoring and care of
cancer survivors may need to be modified on a routine basis.
(10) Despite the intense stress caused by childhood cancer,
there is a lack of standardized and coordinated psychosocial
care for the children and their families, from the date of
diagnosis through treatment and survivorship.
(11) The Institute of Medicine, in its report on cancer
survivorship entitled ``Childhood Cancer Survivorship:
Improving Care and Quality of Life'', states that an
organized system of care and a method of care for pediatric
cancer survivors is needed.
(12) Focused and well-designed research and pilot health
delivery programs can answer questions about the optimal ways
to provide health care, follow-up monitoring services, and
survivorship care to those diagnosed with childhood cancer
and contribute to improvements in the quality of care and
quality of life of those individuals through adulthood.
(13) The National Institutes of Health, including the
National Cancer Institute, invest approximately half of their
annual appropriations to support basic research that serves
as the foundation for translational and clinical research for
all diseases and conditions, with the potential to lead to
breakthroughs for children with cancer. Virtually all
progress against cancer--in both children and adults--has
been founded in basic research, often in areas not directly
related to the disease.
(14) The National Cancer Institute supports a number of key
research programs specifically to advance childhood cancer
care, including precision medicine clinical trials for
children with cancer, the Children's Oncology Group (part of
the National Clinical Trials Network of the National Cancer
Institute), the Pediatric Preclinical Testing Consortium, the
Pediatric Brain Tumor Consortium, the Childhood Cancer
Survivor Study, the Therapeutically Applicable Research to
Generate Effective Treatments program and related pediatric
cancer genomics research (including the Pediatric MATCH
Precision Medicine trial), and the Pediatric Oncology Branch
(part of the intramural program of the National Cancer
Institute, whose mission is to develop new treatments for
pediatric cancer).
[[Page H7194]]
TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY
Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer
Reauthorization Act
SEC. 101. CHILDREN'S CANCER BIOREPOSITORIES AND BIOSPECIMEN
RESEARCH.
Section 417E of the Public Health Service Act (42 U.S.C.
285a-11) is amended--
(1) by striking subsection (a) and inserting the following:
``(a) Children's Cancer Biorepositories.--
``(1) Award.--The Secretary, acting through the Director of
NIH, may make awards to an entity or entities described in
paragraph (4) to build upon existing initiatives to collect
biospecimens and clinical and demographic information with a
goal of collection for the vast majority of all children,
adolescents, and young adults with selected cancer subtypes
(and their recurrences) for which current treatments are
least effective, through one or more biospecimen research
efforts designed to achieve a better understanding of the
cause of such cancers (and their recurrences) and the effects
of treatments for such cancers.
``(2) Use of funds.--Amounts received under an award under
paragraph (1) may be used to carry out the following:
``(A) Acquire, preserve, and store high-quality, donated
biospecimens and associated clinical and demographic
information on children, adolescents, and young adults
diagnosed with cancer in the United States, focusing on
children and adolescents enrolled in clinical trials for whom
current treatments are least effective. Activities under this
subparagraph may include storage of biospecimens and
associated clinical and demographic data at biorepositories
supported by the National Cancer Institute, such as the
Children's Oncology Group Biorepository and the Pediatric
Cooperative Human Tissue Network as well as through
biorepositories established as appropriate to support the
scientific needs of future research efforts.
``(B) Make such information publicly available, including
the repositories described in subparagraph (A).
``(C) Maintain a secure searchable database on stored
biospecimens and associated clinical and demographic data
from children, adolescents, and young adults with cancer for
the conduct of research by scientists and qualified health
care professionals.
``(D) Establish procedures for evaluating applications for
access to such biospecimens and clinical and demographic data
from researchers and other qualified health care
professionals.
``(E) Make available and distribute biospecimens and
clinical and demographic data from children, adolescents, and
young adults with cancer to researchers and qualified health
care professionals for peer-reviewed research at a minimal
cost.
``(3) No requirement.--No child, adolescent, or young adult
with cancer shall be required under this subsection to
contribute a specimen to a biorepository or share clinical or
demographic data.
``(4) Application; considerations.--
``(A) Application.--To be eligible to receive an award
under paragraph (1) an entity shall submit an application to
the Secretary at such a time, in such manner, and containing
such information as the Secretary may reasonably require.
``(B) Considerations.--In evaluating the applications in
subparagraph (A), the Secretary shall consider the existing
infrastructure of the entity that would allow for the timely
capture of biospecimens and related clinical and demographic
information for children, adolescents, and young adults with
cancer.
``(5) Privacy protections; consent.--
``(A) In general.--The Secretary may not make an award
under paragraph (1) to an entity unless the Secretary ensures
that such entity--
``(i) collects biospecimens and associated clinical and
demographic information from children and adolescents with
appropriate permission from parents or legal guardians in
accordance with Federal and State law; and
``(ii) adheres to strict confidentiality to protect the
identity and privacy of patients in accordance with Federal
and State law.
``(B) Consent.--The Secretary shall establish an
appropriate process for achieving consent from the patient,
parent, or legal guardian.
``(6) Single point of access; standard data; guidelines and
oversight.--
``(A) Single point of access.--The Secretary shall ensure
that each biorepository supported under paragraph (1) has
electronically searchable data for use by researchers and
other qualified health care professionals in the manner and
to the extent defined by the Secretary.
``(B) Standard data.--The Secretary shall require all
recipients of an award under this section to make available a
standard dataset for the purposes of subparagraph (A) in a
standard electronic format that enables researchers and
qualified health care professionals to search.
``(C) Guidelines and oversight.--The Secretary shall
develop and disseminate appropriate guidelines for the
development and maintenance of the biorepositories supported
under this section, including appropriate oversight.
``(7) Coordination.--The Secretary shall ensure that
clinical and demographic information collected in accordance
with this section is collected in coordination with the
information collected under section 399E-1.
``(8) Prohibition on use of funds.--Funds made available to
carry out this subsection shall not be used to acquire,
preserve, or maintain a biospecimen collected from a patient
if such activity is already covered by funds available from
the National Cancer Institute for such purpose.
``(9) Report.--Not later than 4 years after the date of
enactment of the Childhood Cancer Survivorship, Treatment,
Access, and Research Act of 2016, the Secretary shall submit
to Congress a report on--
``(A) the number of biospecimens and corresponding clinical
demographic data collected through the biospecimen research
efforts supported under paragraph (1);
``(B) the number of biospecimens and corresponding clinical
demographic data requested for use by researchers;
``(C) any barriers to the collection of biospecimens and
corresponding clinical demographic data;
``(D) any barriers experienced by researchers or health
care professionals in accessing the biospecimens and
corresponding clinical demographic data necessary for use in
research; and
``(E) any recommendations with respect to improving the
biospecimen and biorepository research efforts under this
subsection.
``(10) Definitions.--For purposes of this subsection:
``(A) Award.--The term `award' includes a grant, contract,
cooperative agreement, or other transaction determined by the
Secretary.
``(B) Biospecimen.--The term `biospecimen' includes--
``(i) solid tumor tissue or bone marrow;
``(ii) normal or control tissue;
``(iii) blood and plasma;
``(iv) DNA and RNA extractions;
``(v) familial DNA; and
``(vi) any other sample required by the Secretary.
``(C) Clinical and demographic information.--The term
`clinical and demographic information' includes--
``(i) date of diagnosis;
``(ii) age at diagnosis;
``(iii) the patient's gender, race, ethnicity, and
environmental exposures;
``(iv) extent of disease at enrollment;
``(v) site of metastases;
``(vi) location of primary tumor coded;
``(vii) histologic diagnosis;
``(viii) tumor marker data when available;
``(ix) treatment and outcome data;
``(x) information related to specimen quality; and
``(xi) any other information required by the Secretary.'';
and
(2) in subsection (d)--
(A) by striking ``and section 399E-1'' and inserting ``and
sections 317U, 399E-1, 417H, and 417H-1'';
(B) by striking ``2009 through 2013'' and inserting ``2017
through 2021''; and
(C) by striking ``such purpose'' and inserting ``such
purposes''.
SEC. 102. IMPROVING CHILDHOOD CANCER SURVEILLANCE.
Section 399E-1 of the Public Health Service Act (42 U.S.C.
280e-3a) is amended--
(1) by redesignating subsection (b) as subsection (d); and
(2) by striking subsection (a) and inserting the following:
``(a) In General.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
may make awards to State cancer registries to enhance and
expand infrastructure to track the epidemiology of cancer in
children, adolescents, and young adults. Such registries may
be updated to include each occurrence of such cancers within
a period of time designated by the Secretary.
``(b) Activities.--The grants described in subsection (a)
may be used for--
``(1) identifying, recruiting, and training all potential
sources for reporting childhood, adolescent, and young adult
cancer cases;
``(2) developing procedures to implement early inclusion of
childhood, adolescent, and young adult cancer cases on State
cancer registries through the use of electronic reporting;
``(3) purchasing infrastructure to support the early
inclusion of childhood, adolescent, and young adult cancer
cases on such registries;
``(4) submitting deidentified data to the Centers for
Disease Control and Prevention for inclusion in a national
database of childhood, adolescent, and young adult cancers;
and
``(5) tracking the late effects of childhood, adolescent,
and young adult cancers.
``(c) Coordination.--The Secretary shall ensure that
information collected through State cancer registries under
this section is collected in coordination with clinical and
demographic information collected under section 417E(a) as
appropriate.''.
Subtitle B--Pediatric Expertise at NIH
SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC ONCOLOGIST ON
THE NATIONAL CANCER ADVISORY BOARD.
Clause (iii) of section 406(h)(2)(A) of the Public Health
and Service Act (42 U.S.C. 284a(h)(2)(A)) is amended to read
as follows:
``(iii) of the members appointed to the Board--
``(I) not less than 5 members shall be individuals
knowledgeable in environmental carcinogenesis (including
carcinogenesis involving occupational and dietary factors);
and
``(II) not less than one member shall be an individual
knowledgeable in pediatric oncology;''.
[[Page H7195]]
SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EXPERTISE AT
THE NATIONAL CANCER INSTITUTE.
It is the sense of Congress that the Director of the
National Cancer Institute should ensure that all applicable
study sections, committees, advisory groups, and panels at
the National Cancer Institute include one or more qualified
pediatric oncologists, as appropriate.
Subtitle C--NIH Report on Childhood Cancer Activities
SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH PROJECTS.
Section 409D(c)(3) of the Public Health Service Act (42
U.S.C. 284h(c)(3)) is amended by--
(1) striking ``public on'' and inserting ``public on--
``(A)'';
(2) striking the period at the end and inserting ``; and'';
and
(3) inserting at the end the following:
``(B) childhood cancer research projects conducted or
supported by the National Institutes of Health.''.
TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND
CAREGIVER SUPPORT
Subtitle A--Childhood Cancer Survivors' Quality of Life Act
SEC. 201. CANCER SURVIVORSHIP PROGRAMS.
(a) Cancer Survivorship Programs.--The Public Health
Service Act is amended by inserting after section 399N of
such Act (42 U.S.C. 280g-2) the following:
``SEC. 399N-1. PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS OF
CARE FOR PEDIATRIC CANCER SURVIVORS.
``(a) In General.--Not later than 1 year after the date of
enactment of this section, the Secretary may make awards to
eligible entities to establish pilot programs to develop,
study, or evaluate model systems for monitoring and caring
for childhood cancer survivors throughout their lifespan,
including evaluation of shared care and medical home and
clinic based models for transition to adult care.
``(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 community-based medical facility; or
``(5) any other entity with significant experience and
expertise in treating survivors of childhood cancers.
``(c) Use of Funds.--The Secretary may make an award under
this section to an eligible entity only if the entity
agrees--
``(1) to use the award 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 different models of follow-up
care, monitoring, and other survivorship programs (including
peer support and mentoring programs).
``(B) Development of various models for providing
multidisciplinary care.
``(C) Dissemination of information and the provision of
training to health care providers about how to provide
linguistically and culturally competent follow-up care and
monitoring to cancer survivors and their families.
``(D) Development of psychosocial interventions and support
programs to improve the quality of life of cancer survivors
and their families.
``(E) Design of systems for the effective transfer of
treatment information and care summaries from cancer care
providers to other health care providers (including risk
factors and a plan for recommended follow-up care).
``(F) Dissemination of the information and programs
described in subparagraphs (A) through (E) to other health
care providers (including primary care physicians and
internists) and to cancer survivors and their families, where
appropriate.
``(G) Development of initiatives that promote the
coordination and effective transition of care between cancer
care providers, primary care physicians, and mental health
professionals.
``SEC. 399N-2. WORKFORCE DEVELOPMENT COLLABORATIVE ON MEDICAL
AND PSYCHOSOCIAL CARE FOR CHILDHOOD CANCER
SURVIVORS.
``(a) In General.--The Secretary shall, not later than 1
year after the date of enactment of this Act, convene a
Workforce Development Collaborative on Medical and
Psychosocial Care for Pediatric Cancer Survivors (referred to
in this paragraph as the `Collaborative'). The Collaborative
shall be a cross-specialty, multidisciplinary group composed
of educators, consumer and family advocates, and providers of
psychosocial and biomedical health services.
``(b) Goals and Reports.--The Collaborative shall submit to
the Secretary a report establishing a plan to meet the
following objectives for medical and psychosocial care
workforce development:
``(1) Identifying, refining, and broadly disseminating to
health care educators information about workforce
competencies, models, and curricula relevant to providing
medical and psychosocial services to persons surviving
pediatric cancers.
``(2) Adapting curricula for continuing education of the
existing workforce using efficient workplace-based learning
approaches.
``(3) Developing the skills of faculty and other trainers
in teaching psychosocial health care using evidence-based
teaching strategies.
``(4) Strengthening the emphasis on psychosocial health
care in educational accreditation standards and professional
licensing and certification exams by recommending revisions
to the relevant oversight organizations.
``(5) Evaluating the effectiveness of patient navigators in
pediatric cancer survivorship care.
``(6) Evaluating the effectiveness of peer support programs
in the psychosocial care of pediatric cancer patients and
survivors.''.
(b) 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).
SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CANCER
SURVIVORS.
(a) In General.--Section 417E of the Public Health Service
Act (42 U.S.C. 285a-11), as amended by section 101, is
further amended--
(1) in the section heading, by striking ``research and
awareness'' and inserting ``research, awareness, and
survivorship''; and
(2) by striking subsection (b) and inserting the following:
``(b) Improving Care for Pediatric Cancer Survivors.--
``(1) Research on causes of health disparities in pediatric
cancer survivorship.--
``(A) Research awards.--The Director of NIH, in
coordination with ongoing research activities, may conduct or
support pediatric cancer survivorship research including any
of the following areas:
``(i) Needs and outcomes of pediatric cancer survivors
within minority or other medically underserved populations.
``(ii) Health disparities in pediatric cancer survivorship
outcomes within minority or other medically underserved
populations.
``(iii) Barriers that pediatric cancer survivors within
minority or other medically underserved populations face in
receiving follow-up care.
``(iv) Familial, socioeconomic, and other environmental
factors and the impact of such factors on treatment outcomes
and survivorship.
``(B) Balanced approach.--In supporting research under
subparagraph (A)(i) on pediatric cancer survivors within
minority or other medically underserved populations, the
Director of NIH shall ensure that such research addresses
both the physical and the psychological needs of such
survivors, as appropriate.
``(2) Research on late effects and follow-up care for
pediatric cancer survivors.--The Director of NIH, in
coordination with ongoing research activities, may conduct or
support research on follow-up care for pediatric cancer
survivors, including any of the following areas:
``(A) The development of indicators used for long-term
patient tracking and analysis of the late effects of cancer
treatment for pediatric cancer survivors.
``(B) The identification of risk factors associated with
the late effects of cancer treatment.
``(C) The identification of predictors of adverse
neurocognitive and psychosocial outcomes.
``(D) The identification of the molecular underpinnings of
long-term complications.
``(E) The development of risk prediction models to identify
those at highest risk of long-term complications.
``(F) Initiatives to protect cancer survivors from the late
effects of cancer treatment, by developing targeted
interventions to reduce the burden of morbidity borne by
cancer survivors.
``(G) Transitions in care for pediatric cancer survivors.
``(H) Training of professionals to provide linguistically
and culturally competent follow-up care to pediatric cancer
survivors.
``(I) Different models of follow-up care.
``(J) Examining the cost-effectiveness of the different
models of follow-up care.''.
SEC. 203. COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR
PEDIATRIC CANCER SURVIVORS.
Part B of title III of the Public Health Service Act (42
U.S.C. 243 et seq.) is amended by inserting after section
317T the following:
``SEC. 317U. STANDARDS FOR COMPREHENSIVE LONG-TERM CARE FOR
PEDIATRIC CANCER SURVIVORS THROUGH THE
LIFESPAN.
``The Secretary may establish a task force to develop and
test standards, outcomes, and metrics for high-quality
childhood cancer survivorship care in consultation with a
full spectrum of representation of experts in late effects of
disease and treatment of childhood cancers, including--
``(1) oncologists who treat children and adolescents;
``(2) oncologists who treat adults;
``(3) primary care providers engaged in survivorship care;
``(4) survivors of childhood cancer;
``(5) parents of children who have been diagnosed with and
treated for cancer and parents of long-term survivors;
``(6) professionals who are engaged in the development of
clinical practice guidelines;
``(7) nurses and social workers;
[[Page H7196]]
``(8) mental health professionals;
``(9) allied health professionals, including physical
therapists and occupational therapists;
``(10) experts in health care quality measurement and
improvement; and
``(11) others, as the Secretary determines appropriate.''.
SEC. 204. SURVIVORSHIP DEMONSTRATION PROJECT.
(a) In General.--Not later than one year after the date of
the enactment of this Act, the Secretary of Health and Human
Services (referred to in this section as the ``Secretary'')
may carry out a demonstration project over a 3-year period,
designed to improve the quality and efficiency of care
provided to childhood cancer survivors throughout their
lifespan, through improved care coordination as survivors
transitions to adult care.
(b) Selection of Demonstration Sites.--
(1) Maximum number of sites.--The maximum number of sites
at which the demonstration project under subsection (a) is
carried out may not exceed 10.
(2) Diversity of sites.--In selecting entities to
participate in the demonstration project, the Secretary may,
to the extent practicable, include in such selection--
(A) small-, medium-, and large-sized sites; and
(B) sites located in different geographic areas.
(c) Activities Under Demonstration Project.--The activities
conducted under the demonstration project under subsection
(a) may, in addition to any other activity specified by the
Secretary, include activities that seek to develop different
models of care coordination, including transitions of care,
follow-up care, monitoring, and other survivorship related
programs that utilize a multidisciplinary, team based
approach to care, including any of the following activities:
(1) Coordination of care and transitions of care between
cancer care providers, primary care physicians, mental health
professionals and any other relevant providers.
(2) Dissemination of information to, and training of,
health care providers about linguistically and culturally
competent follow-up care specific to cancer survivors.
(3) Development of monitoring programs for cancer survivors
and their families.
(4) Incorporation of peer support and mentoring programs to
improve the quality of life of cancer survivors.
(5) Designing systems and models for the effective transfer
of treatment information and care summaries from cancer care
providers to other health care providers (including risk
factors and a care plan).
(6) Evaluation of functional status and incorporation of
specific functional needs into the care planning process.
(7) Dissemination of the information on activities and
programs conducted under this section to other health care
providers (including primary care physicians) and to cancer
survivors and their families, where appropriate.
(8) Other items determined by the Secretary.
(d) Measures.--The Secretary may use the following measures
to assess the performance of each site:
(1) Patient care and patient/family satisfaction measures.
(2) Resource utilization measures.
(3) Adult survivorship measures, as appropriate.
(e) GAO Report.--The Comptroller General of the United
States shall submit a report to Congress evaluating the
success of the demonstration project. Such report shall
include an assessment of the impact of the project upon the
quality and cost-efficiency of services furnished to
individuals under this title, including an assessment of the
satisfaction of such individuals with respect to such
services that were furnished under such project. Such report
shall include recommendations regarding the possible
expansion of the demonstration project.
Subtitle B--Coverage and Payment of High Quality Care
SEC. 211. REPORT BY THE COMPTROLLER GENERAL.
(a) In General.--The Comptroller General of the United
States shall conduct a review and submit recommendations to
Congress on existing barriers to obtaining and paying for
adequate medical care for survivors of childhood cancer.
(b) Considerations.--In carrying out the review and
formulating recommendations under subsection (a), the
Comptroller General shall--
(1) identify existing barriers to the availability of
complete and coordinated survivorship care for survivors of
childhood cancer and to the availability of expert pediatric
palliative care, including consideration of--
(A) understanding and education among patients, health care
providers, regulators, and third-party payors;
(B) adequacy of payment codes to cover necessary
survivorship services;
(C) access to necessary medical and other services for such
survivors, including the services described in subsection
(c); and
(D) lack of pediatric palliative care across all stages of
illness and hospice services for patients approaching the end
of life; and
(2) make recommendations to provide improved access and
payment plans for childhood cancer survivorship programs and
palliative care, including psychosocial services and coverage
of such services.
(c) Services Described.--The services described in this
subsection are the following:
(1) Coordinated multidisciplinary long-term follow-up care
with access to appropriate pediatric subspecialists and adult
subspecialists with specific expertise in survivorship,
including subspecialists with expertise in oncology,
radiation oncology, surgery, cardiology, psychiatry or
psychology, endocrinology, pulmonology, nephrology,
dermatology, gynecology, and urology.
(2) Appropriate organ function testing (particularly
screening for potential problems at much younger ages than
usually indicated in the general population) and treatment,
including--
(A) neuropsychological testing and mental health services;
(B) fertility testing and treatment;
(C) evaluation and treatment for endocrine disorders
including growth hormone and testosterone replacement;
(D) diagnostic imaging to screen for late effects of
treatment (including subsequent cancers), such as mammograms
and magnetic resonance imaging testing to screen for possible
breast cancer;
(E) screening for cardiac problems, such as
echocardiograms;
(F) screening for osteoporosis with bone densitometry,
including duel x-ray absorptiometry and monitoring 25
hydroxyvitamin D levels;
(G) dental coverage and necessary dental implants;
(H) hearing aids and other prosthetic devices; and
(I) screening for lung problems, such as pulmonary function
testing.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Texas (Mr. Burgess) and the gentlewoman from California (Ms. Matsui)
each will control 20 minutes.
The Chair recognizes the gentleman from Texas.
General Leave
Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and insert extraneous materials into the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Texas?
There was no objection.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
I rise today in support of H.R. 3381, the Childhood Cancer
Survivorship, Treatment, Access, and Research Act of 2016, also known
as the Childhood Cancer STAR Act. This bill was introduced by my Texas
colleague, Representative Mike McCaul; Representative Chris Van Hollen;
and Representative Jackie Speier.
The legislation we are considering today is important for many young
Americans, as it is intended to help the most vulnerable among us:
children who have been diagnosed with cancer.
We have made progress in combating childhood cancer. In 1960, only 4
percent of children with cancer survived more than 5 years. Today, 80
percent of children with cancer survive, but there is work left to do.
H.R. 3381 will expand the opportunities for childhood cancer
research, improve childhood cancer surveillance, help improve the
quality of life for childhood cancer survivors, and help ensure that
there is proper pediatric cancer research within the National
Institutes of Health.
This legislation enjoys broad bipartisan support. It has 270
cosponsors, representing over 60 percent of the House of
Representatives.
Mr. Speaker, I urge my colleagues to vote ``yes'' on H.R. 3381.
I reserve the balance of my time.
Ms. MATSUI. Mr. Speaker, I yield myself such time as I may consume.
I rise today in support of H.R. 3381, the Childhood Cancer
Survivorship, Treatment, Access, and Research Act.
Nearly 16,000 children are diagnosed with cancer in the United States
each year. These children bravely battle disease and carry burdens that
no one their age should. The Childhood Cancer STAR Act gives those
children and their families hope by encouraging improved research,
development of treatments, and survivorship programs for children with
cancer.
This legislation urges the National Institutes of Health to find new
opportunities to expand research into pediatric cancer and
survivorship, including research on the causes of health disparities in
pediatric cancer survivors.
This legislation would also allow the Centers for Disease Control and
Prevention to award funding to help States better track pediatric
cancer. Improved information about childhood cancer will help guide
public health decisions and strategies as well as research.
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Expanding research that leads to treatments and cures is only part of
the solution for children diagnosed with cancer. This bill recognizes
that these children often require different care for the remainder of
their lives.
As many as two-thirds of pediatric cancer survivors suffer from the
effects of their disease and treatments long term, including secondary
cancers and organ damage.
To help children after they have beat pediatric cancer, this bill
would create a pilot program to explore model systems of care for
pediatric cancer survivors and to study barriers to adequate medical
care for survivors of childhood cancer.
I urge my colleagues to support this bill.
Mr. Speaker, I reserve the balance of my time.
{time} 1245
Mr. BURGESS. Mr. Speaker, I yield such time as he may consume to the
gentleman from Texas (Mr. McCaul), the chairman of the Committee on
Homeland Security, a true champion for all things pediatric.
Mr. McCAUL. Mr. Speaker, I want to also thank the gentleman from
Texas (Mr. Burgess) for his work on this effort as well. I chair the
Committee on Homeland Security, but I also chair the Congressional
Childhood Cancer Caucus. It is one of the biggest threats to our
children. It is the number one killer of our children.
Therefore, I rise in support of H.R. 3381, the Childhood Cancer STAR
Act, because it will address four major concerns facing the pediatric
cancer community: survivorship, treatment, access, and research. I
introduced this bill with my colleagues on the other side of the aisle,
Chris Van Hollen of Maryland and Ms. Jackie Speier of California, to be
the most comprehensive childhood cancer bill ever considered before
this House.
I cofounded, as I said, the Congressional Childhood Cancer Caucus 7
years ago as a platform to give children a voice, children who don't
have lobbyists, children who are dying, who have been impacted by this
life-altering diagnosis.
To better fight childhood cancer, we must know more about it, and
that is what the STAR Act does. It authorizes NIH to expand their
efforts to collect data on childhood cancer so we can better understand
its causes and the effects of treatment. It also builds on previous
work from cancer research groups to provide doctors with the resources
necessary to identify children who may be at risk for developing
cancer, preventing the worst outcomes from becoming a reality.
Finally, we must address the needs of two-thirds of childhood cancer
survivors facing serious lifelong medical conditions. Our bill will
improve collaboration among providers so doctors are better able to
care for survivors as they age.
I am pleased this bill has the strong support of the patient advocacy
community. I especially want to thank the St. Baldrick's Foundation for
their continued support and help and work on this important bill. Their
CEO, Kathleen Ruddy, as well as Kevin Mathis and Danielle Leach, have
been relentless advocates of this bill to make a difference in kids'
lives. I look forward to working with them in the future as we look to
further address the needs of the childhood cancer community.
Mr. Speaker, I close by stating that we are also very excited that
the Cures Act bill passed the House of Representatives, a very
important bill about curing not just childhood cancer, but all
diseases. We urge the Senate to pass that legislation as well. In that
bill was the Advancing Hope Act, which will make a difference in the
number of drugs that can be developed to cure childhood cancer.
In fact, it reauthorizes a bill that I introduced to the year 2020, a
bill that has already produced a childhood cancer drug, the first since
the 1980s, to cure neuroblastoma in children. When I went to meet with
Rex Ryan at Dell Children's Medical Center in Austin, Texas, in this
clinical trial, the idea, Mr. Speaker, that you can actually pass a
bill in this Congress and see that tangible result, a bill passed in
this great body that transforms into saving the life of a child, is
truly a tremendous and extraordinary experience.
Ms. MATSUI. Mr. Speaker, I yield 5 minutes to the gentlewoman from
California (Ms. Speier).
Ms. SPEIER. Mr. Speaker, let me first say what a joy it has been to
work with my colleague Mike McCaul on this issue, and with Chris Van
Hollen as well. Their passion, compassion, and commitment to this issue
is one that I have not seen replicated many times.
Let me comment by talking about the letter I received from Sylvia
DeCourcey in my district. Her son Tyler has been battling stage 4
neuroblastoma for about a year. She had written to me the following:
``As a parent of a pediatric cancer patient, I wanted to say thank you
for introducing the Childhood Cancer STAR Act. This has the potential
to make a huge difference for my son Tyler and his fellow warriors. In
August we lost two little buddies to the neuroblastoma monster. To
think that if this act was already in place, that may not have
happened, and the heartaches of their families and friends could be
prevented. I hope and pray that my son will beat this. Thank you again
for sponsoring the STAR Act. . . .''
On Friday I received a follow-up email from Sylvia, and it still
sends chills up and down my spine. Tyler has officially been in
remission for 2 weeks. It is only fitting that today we are taking up
the STAR Act.
The STAR Act would not have been possible without the perseverance of
families like Sylvia and Tyler and of the young people who are living
with the cancers. There have been more than 50 organizations that have
worked on this issue. Together they have managed to push even a
gridlocked Congress into action.
I would like to take a moment to highlight the personal importance of
the survivorship provisions of the STAR Act, which I have been working
on since 2011. Fifty years ago, only 4 percent of children with cancer
survived more than 5 years beyond their diagnosis. Today the cure rate
has increased to over 80 percent. It is a remarkable accomplishment.
Now we have some 500,000 young people who have survived childhood
cancer.
But, as many families know, the fight against childhood cancer
doesn't end with remission. As many as two-thirds of childhood cancer
survivors experience secondary cancers, and that is why this particular
provision of the bill is so important. It is imperative that the STAR
Act has a strategy to improve their care and quality of life, and it
would not have happened without the guidance of Susan Weiner and Sue
Emmer of Children's Cause for Cancer Advocacy. I would also like to
thank the staff of all of our offices who worked so hard on this
measure: Thomas Rice, Jessica Nalepa, Austin Carson, Kelly Cotner, and
Andy Taylor with Congressman McCaul; Ziky Ababiya and Erika Appel with
Congressman Van Hollen; Jill Brimmer with Senator Reed; Dana Richter
with Senator Moore Capito; Adrianna Simonelli with Chairman Upton;
Waverly Gordon with Ranking Member Pallone; Kelly Dixon with Majority
Leader McCarthy; Charlene MacDonald with Democratic Whip Hoyer; Holly
Gibbons and her team at the NIH; and Molly Fishman on my staff as well.
I want to thank my colleagues for the time, the leadership, and for
giving us an opportunity to do something to improve the lives of these
children living with cancer and their parents who are advocating for
them.
Mr. BURGESS. Mr. Speaker, I yield 2 minutes to the gentleman from
Georgia (Mr. Carter).
Mr. CARTER of Georgia. Mr. Speaker, I rise today in support of H.R.
3381, the Childhood Cancer STAR Act, which would allow the National
Institutes of Health and the Department of Health and Human Services to
expand their efforts to research treatments and care for childhood
cancer patients.
Each year, thousands of children are diagnosed with cancer, and far
too many children are lost to this horrible disease. Childhood cancer
survivors and their families still face an uphill battle after
remission, as the chances for recurrence can be higher for children.
Advances in treatment have greatly improved outcomes, but more must
be done to support patients, survivors, and their families. The bill
would help expand efforts to improve the lives of childhood cancer
survivors, develop new treatments, increase access to
[[Page H7198]]
care, and accelerate lifesaving research for those impacted by
childhood cancer.
Childhood cancer patients and survivors have unique needs, and this
bill will ensure that those needs are addressed through continued
child-focused research. We must continue the fight until no child is
lost to cancer. I urge my colleagues to support childhood cancer
patients, survivors, and families by supporting the Childhood Cancer
STAR Act.
Ms. MATSUI. Mr. Speaker, I urge my colleagues to support the
Childhood Cancer STAR Act.
I yield back the balance of my time.
Mr. BURGESS. Mr. Speaker, I urge all Members to vote in favor of H.R.
3381.
I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Texas (Mr. Burgess) that the House suspend the rules and
pass the bill, H.R. 3381, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
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