[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3381 Received in Senate (RDS)]
<DOC>
114th CONGRESS
2d Session
H. R. 3381
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
December 7, 2016
Received
_______________________________________________________________________
AN ACT
To maximize discovery, and accelerate development and availability, of
promising childhood cancer treatments, 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; 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).
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 five 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;''.
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;
``(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 1 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.
Passed the House of Representatives December 6, 2016.
Attest:
KAREN L. HAAS,
Clerk.