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‘‘(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 AD-
VISORY 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 in-
dividuals knowledgeable in environmental car-
cinogenesis (including carcinogenesis involving 
occupational and dietary factors); and 
‘‘(II) not less than one member shall be an 
individual knowledgeable in pediatric oncol-
ogy;’’. 
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SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EX-
PERTISE AT THE NATIONAL CANCER INSTI-
TUTE. 
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 Insti-
tutes of Health.’’. 
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TITLE 
II—MAXIMIZING 
DELIV-
ERY: CARE, QUALITY OF LIFE, 
SURVIVORSHIP, 
AND 
CARE-
GIVER 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 SYS-
TEMS OF CARE FOR PEDIATRIC CANCER SUR-
VIVORS. 
‘‘(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; 
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‘‘(4) a community-based medical facility; or 
‘‘(5) any other entity with significant experience 
and expertise in treating survivors of childhood can-
cers. 
‘‘(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 pro-
gram 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 fol-
lowing: 
‘‘(A) Design of protocols for different mod-
els of follow-up care, monitoring, and other sur-
vivorship 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 cul-
turally competent follow-up care and monitoring 
to cancer survivors and their families. 
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‘‘(D) Development of psychosocial inter-
ventions and support programs to improve the 
quality of life of cancer survivors and their fam-
ilies. 
‘‘(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 (in-
cluding primary care physicians and internists) 
and to cancer survivors and their families, 
where appropriate. 
‘‘(G) Development of initiatives that pro-
mote the coordination and effective transition of 
care between cancer care providers, primary 
care physicians, and mental health profes-
sionals. 
‘‘SEC. 
399N–2. 
WORKFORCE 
DEVELOPMENT 
COLLABO-
RATIVE 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, con-
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vene a Workforce Development Collaborative on Medical 
and Psychosocial Care for Pediatric Cancer Survivors (re-
ferred to in this paragraph as the ‘Collaborative’). The 
Collaborative shall be a cross-specialty, multidisciplinary 
group composed of educators, consumer and family advo-
cates, 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 dissemi-
nating to health care educators information about 
workforce competencies, models, and curricula rel-
evant to providing medical and psychosocial services 
to persons surviving pediatric cancers. 
‘‘(2) Adapting curricula for continuing edu-
cation of the existing workforce using efficient work-
place-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 psycho-
social health care in educational accreditation stand-
ards and professional licensing and certification 
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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 sup-
port programs in the psychosocial care of pediatric 
cancer patients and survivors.’’. 
(b) TECHNICAL AMENDMENT.— 
(1) 
IN
GENERAL.—Section 
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 In-
vestment and Education Act of 2002 (Public Law 
107–172; 116 Stat. 541). 
SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN-
CER 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 ‘‘RE-
SEARCH AND AWARENESS’’ and inserting ‘‘RE-
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SEARCH, AWARENESS, AND
SURVIVORSHIP’’; 
and 
(2) by striking subsection (b) and inserting the 
following: 
‘‘(b) IMPROVING CARE FOR PEDIATRIC CANCER SUR-
VIVORS.— 
‘‘(1) RESEARCH ON CAUSES OF HEALTH DIS-
PARITIES 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 minor-
ity or other medically underserved popu-
lations. 
‘‘(iii) Barriers that pediatric cancer 
survivors within minority or other medi-
cally underserved populations face in re-
ceiving follow-up care. 
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‘‘(iv) Familial, socioeconomic, and 
other environmental factors and the impact 
of such factors on treatment outcomes and 
survivorship. 
‘‘(B) 
BALANCED
APPROACH.—In 
sup-
porting 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 psycho-
logical needs of such survivors, as appropriate. 
‘‘(2) RESEARCH ON LATE EFFECTS AND FOL-
LOW-UP
CARE
FOR
PEDIATRIC
CANCER
SUR-
VIVORS.—The Director of NIH, in coordination with 
ongoing research activities, may conduct or support 
research on follow-up care for pediatric cancer sur-
vivors, 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 as-
sociated with the late effects of cancer treat-
ment. 
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‘‘(C) The identification of predictors of ad-
verse 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 de-
veloping targeted interventions to reduce the 
burden of morbidity borne by cancer survivors. 
‘‘(G) Transitions in care for pediatric can-
cer 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 SERV-
ICES 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 sec-
tion 317T the following: 
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‘‘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 adoles-
cents; 
‘‘(2) oncologists who treat adults; 
‘‘(3) primary care providers engaged in survi-
vorship care; 
‘‘(4) survivors of childhood cancer; 
‘‘(5) parents of children who have been diag-
nosed with and treated for cancer and parents of 
long-term survivors; 
‘‘(6) professionals who are engaged in the devel-
opment of clinical practice guidelines; 
‘‘(7) nurses and social workers; 
‘‘(8) mental health professionals; 
‘‘(9) allied health professionals, including phys-
ical therapists and occupational therapists; 
‘‘(10) experts in health care quality measure-
ment and improvement; and 
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‘‘(11) others, as the Secretary determines ap-
propriate.’’. 
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 effi-
ciency of care provided to childhood cancer survivors 
throughout their lifespan, through improved care coordi-
nation as survivors transitions to adult care. 
(b) SELECTION OF DEMONSTRATION SITES.— 
(1) MAXIMUM NUMBER OF SITES.—The max-
imum 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 Sec-
retary may, to the extent practicable, include in such 
selection— 
(A) small-, medium-, and large-sized sites; 
and 
(B) sites located in different geographic 
areas. 
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(c) 
ACTIVITIES
UNDER
DEMONSTRATION 
PROJECT.—The activities conducted under the demonstra-
tion 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 physi-
cians, mental health professionals and any other rel-
evant providers. 
(2) Dissemination of information to, and train-
ing 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 men-
toring programs to improve the quality of life of can-
cer survivors. 
(5) Designing systems and models for the effec-
tive transfer of treatment information and care sum-
maries from cancer care providers to other health 
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care providers (including risk factors and a care 
plan). 
(6) Evaluation of functional status and incorpo-
ration of specific functional needs into the care plan-
ning process. 
(7) Dissemination of the information on activi-
ties and programs conducted under this section to 
other health care providers (including primary care 
physicians) and to cancer survivors and their fami-
lies, where appropriate. 
(8) Other items determined by the Secretary. 
(d) MEASURES.—The Secretary may use the fol-
lowing 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 appro-
priate. 
(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 indi-
viduals under this title, including an assessment of the sat-
isfaction of such individuals with respect to such services 
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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 rec-
ommendations to Congress on existing barriers to obtain-
ing 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 consider-
ation 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; 
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(C) access to necessary medical and other 
services for such survivors, including the serv-
ices described in subsection (c); and 
(D) lack of pediatric palliative care across 
all stages of illness and hospice services for pa-
tients approaching the end of life; and 
(2) make recommendations to provide improved 
access and payment plans for childhood cancer sur-
vivorship 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 fol-
low-up care with access to appropriate pediatric sub-
specialists and adult subspecialists with specific ex-
pertise 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 (particu-
larly screening for potential problems at much 
younger ages than usually indicated in the general 
population) and treatment, including— 
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(A) neuropsychological testing and mental 
health services; 
(B) fertility testing and treatment; 
(C) evaluation and treatment for endocrine 
disorders including growth hormone and testos-
terone replacement; 
(D) diagnostic imaging to screen for late 
effects of treatment (including subsequent can-
cers), such as mammograms and magnetic reso-
nance 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 
hydroxyvitamin D levels; 
(G) dental coverage and necessary dental 
implants; 
(H) hearing aids and other prosthetic de-
vices; and 
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