I 
113TH CONGRESS 
1ST SESSION H. R. 2058 
To improve and enhance research and programs on childhood cancer 
survivorship, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 20, 2013 
Ms. SPEIER (for herself, Mr. RANGEL, Ms. LEE of California, Mr. MORAN, 
Ms. BORDALLO, Mr. MCCAUL, and Mr. VAN HOLLEN) introduced the fol-
lowing bill; which was referred to the Committee on Energy and Com-
merce 
A BILL 
To improve and enhance research and programs on childhood 
cancer survivorship, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Childhood Cancer Sur-
vivors’ Quality of Life Act of 2013’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
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(1) An estimated 13,500 children and adoles-
cents under age 20 are diagnosed with cancer each 
year. 
(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) The population of survivors of childhood 
cancers has grown dramatically, to over 360,000 in-
dividuals of all ages as of 2012. 
(4) As many as two-thirds of childhood cancer 
survivors are likely to experience at least one late ef-
fect of treatment, with as many as one-fourth expe-
riencing a late effect that is serious or life-threat-
ening. The most common late effects of childhood 
cancer are neurocognitive, psychological, cardio-
pulmonary, endocrine, and musculoskeletal effects 
and secondary malignancies. 
(5) As a result of disparities in the delivery of 
cancer care, minority, low-income, and other medi-
cally underserved children are more likely to be diag-
nosed 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. 
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(6) 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. 
(7) Despite the intense stress caused by child-
hood cancer, there is a lack of standardized and co-
ordinated psychosocial care for the children and 
their families, from the date of diagnosis through 
treatment and survivorship. 
(8) The Institute of Medicine, in its report on 
cancer survivorship entitled ‘‘Childhood Cancer Sur-
vivorship: Improving Care and Quality of Life’’, 
states that an organized system of care and a meth-
od of care for pediatric cancer survivors is needed. 
(9) Focused and well-designed research and 
pilot health delivery programs can answer questions 
about the optimal ways to provide health care, fol-
low-up monitoring services, and survivorship care to 
those diagnosed with childhood cancer and con-
tribute to improvements in the quality of care and 
quality of life of those individuals. 
SEC. 3. CANCER SURVIVORSHIP PROGRAMS. 
(a) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 
of part C of title IV of the Public Health Service Act (42 
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U.S.C. 285 et seq.) is amended by adding at the end the 
following: 
‘‘SEC. 417G. PILOT PROGRAMS TO EXPLORE MODEL SYS-
TEMS OF CARE FOR PEDIATRIC CANCER SUR-
VIVORS. 
‘‘(a) IN GENERAL.—The Secretary shall make grants 
to eligible entities to establish pilot programs to develop, 
study, or evaluate model systems for monitoring and car-
ing for childhood cancer survivors. 
‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 
‘eligible entity’ means— 
‘‘(1) a medical school; 
‘‘(2) a children’s hospital; 
‘‘(3) a cancer center; or 
‘‘(4) any other entity with significant experience 
and expertise in treating survivors of childhood can-
cers. 
‘‘(c) USE OF FUNDS.—The Secretary may make a 
grant under this section to an eligible entity only if the 
entity agrees— 
‘‘(1) to use the grant to establish a pilot pro-
gram to develop, study, or evaluate one or more 
model systems for monitoring and caring for cancer 
survivors; and 
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‘‘(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. 
‘‘(D) Development of support programs to 
improve the quality of life of cancer survivors. 
‘‘(E) Design of systems for the effective 
transfer of treatment information 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) 
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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. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $15,000,000 for each of fiscal years 2015 through 
2019. 
‘‘SEC. 
417G–1. 
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-
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 
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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 preservices cur-
ricula relevant to providing medical and psychosocial 
services to persons with 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 
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. 
‘‘(c) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
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priated $5,000,000 for each of fiscal years 2015 through 
2019.’’. 
(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. 4. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN-
CER SURVIVORS. 
Section 417E of the Public Health Service Act (42 
U.S.C. 285a–11) is amended— 
(1) in the heading, by striking ‘‘RESEARCH 
AND
AWARENESS’’ and inserting ‘‘RESEARCH, 
AWARENESS, AND SURVIVORSHIP’’; 
(2) in subsection (a)— 
(A) by redesignating paragraph (2) as 
paragraph (4); and 
(B) by inserting after paragraph (1) the 
following: 
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‘‘(2) RESEARCH ON CAUSES OF HEALTH DIS-
PARITIES IN PEDIATRIC CANCER SURVIVORSHIP.— 
‘‘(A) GRANTS.—The Director of NIH, act-
ing through the Director of the Institute, in co-
ordination with ongoing research activities, 
shall make grants to entities to conduct re-
search relating to— 
‘‘(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; and 
‘‘(iv) 
familial, 
socioeconomic, 
and 
other environmental factors and the impact 
of such factors on treatment outcomes and 
survivorship. 
‘‘(B) BALANCED
APPROACH.—In making 
grants for research under subparagraph (A)(i) 
on pediatric cancer survivors within minority or 
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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. 
‘‘(3) RESEARCH ON LATE EFFECTS AND FOL-
LOW-UP
CARE
FOR
PEDIATRIC
CANCER
SUR-
VIVORS.—The Director of NIH, in coordination with 
ongoing research activities, shall conduct or support 
research on follow-up care for pediatric cancer sur-
vivors, with special emphasis given to— 
‘‘(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 asso-
ciated with the late effects of cancer treatment; 
‘‘(C) the identification of predictors of 
neurocognitive and psychosocial outcomes; 
‘‘(D) initiatives to protect cancer survivors 
from the late effects of cancer treatment; 
‘‘(E) transitions in care for pediatric can-
cer survivors; 
‘‘(F) training of professionals to provide 
linguistically and culturally competent follow-up 
care to pediatric cancer survivors; and 
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‘‘(G) different models of follow-up care.’’; 
and 
(3) in subsection (d)— 
(A) by striking ‘‘this section and’’ and in-
serting ‘‘subsection (a)(1), subsection (b), and’’; 
(B) by striking ‘‘2013’’ and inserting 
‘‘2019’’; and 
(C) by inserting after the second sentence 
the following: ‘‘For purposes of carrying out 
subsections (a)(2) and (a)(3), there is author-
ized to be appropriated $10,000,000 for each of 
fiscal years 2015 through 2019.’’. 
SEC. 5. 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: 
‘‘SEC. 317U. CLINICS FOR COMPREHENSIVE LONG-TERM 
FOLLOW-UP SERVICES FOR PEDIATRIC CAN-
CER SURVIVORS. 
‘‘(a) IN GENERAL.—The Secretary shall make grants 
to eligible entities to establish and operate a clinic for com-
prehensive long-term follow-up services for pediatric can-
cer survivors. 
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‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 
‘eligible entity’ means— 
‘‘(1) a school of medicine; 
‘‘(2) a children’s hospital; 
‘‘(3) a cancer center; or 
‘‘(4) any other entity determined by the Sec-
retary to have significant experience and expertise 
in— 
‘‘(A) treating pediatric, adolescent, and 
young adult cancers; or 
‘‘(B) integrating medical and psychosocial 
services for pediatric, adolescent, and young 
adult cancer survivors and their families. 
‘‘(c) USE OF FUNDS.—The Secretary may make a 
grant under this section to an eligible entity only if the 
entity agrees to use the grant to pay costs incurred during 
the first 4 years of establishing and operating a clinic for 
comprehensive, long-term, follow-up services for pediatric 
cancer survivors, which may include the costs of— 
‘‘(1) providing medical and psychosocial follow- 
up services, including coordination with the patient’s 
primary care provider and oncologist in order to en-
sure that the medical needs of survivors are ad-
dressed, and providing linguistically and culturally 
competent information to survivors and families with 
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appropriate outreach to medically underserved popu-
lations; 
‘‘(2) the construction, expansion, and mod-
ernization of facilities; 
‘‘(3) acquiring and leasing facilities and equip-
ment (including paying the costs of amortizing the 
principal of, and paying the interest on, loans for 
such facilities and equipment) to support or further 
the operation of the grantee; and 
‘‘(4) the construction and structural modifica-
tion (including equipment acquisition) of facilities to 
permit the integrated delivery of ongoing medical 
and psychosocial care to pediatric cancer survivors 
and their families at a single service site. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $10,000,000 for each of fiscal years 2015 through 
2019.’’. 
Æ 
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