I 
112TH CONGRESS 
1ST SESSION H. R. 3015 
To improve and enhance research and programs on childhood cancer 
survivorship, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
SEPTEMBER 22, 2011 
Ms. SPEIER (for herself, Mr. LATHAM, Mr. MCCAUL, Mr. VAN HOLLEN, Mr. 
MORAN, Mr. KING of New York, Ms. BORDALLO, Ms. WOOLSEY, and Ms. 
FUDGE) introduced the following bill; which was referred to the Com-
mittee on Energy and Commerce 
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 ‘‘Pediatric, Adolescent, 
and Young Adult Cancer Survivorship Research and Qual-
ity of Life Act of 2011’’. 
SEC. 2. FINDINGS. 
Congress finds the following: 
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(1) An estimated 12,400 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 78 percent for children and 
adolescents under age 20. 
(3) The population of survivors of childhood 
cancers has grown dramatically, to over 300,000 in-
dividuals of all ages as of 2007. 
(4) Whereas as many as two-thirds of childhood 
cancer survivors are likely to experience at least one 
late effect of treatment, with as many as one-fourth 
experiencing a late effect that is serious or life- 
threatening. The most common late effects of child-
hood 
cancer 
are 
neurocognitive, 
psychological, 
cardiopulmonary, endocrine, and musculoskeletal ef-
fects and secondary malignancies. 
(5) According to the Intercultural Cancer Coun-
cil, because of disparities in health care delivery 
throughout the cancer care continuum, minority, 
poor, and other medically underserved communities 
are more likely to be diagnosed with late stage dis-
ease, experience poorer treatment outcomes, have 
shorter survival time with less quality of life, and ex-
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perience a substantially greater likelihood of cancer 
death. 
(6) The late effects of cancer treatment may 
change as treatments evolve, which means that the 
monitoring and treatment of cancer survivors may 
need to be modified on a routine basis. 
(7) Despite the trauma caused by childhood 
cancer, there is a lack of standardized and coordi-
nated psychosocial care for the children and their 
families, from the date of diagnosis through treat-
ment and survivorship. 
(8) The Institute of Medicine, in its reports 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. 
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SEC. 3. CANCER SURVIVORSHIP PROGRAMS. 
(a) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 
of part C of title IV of the Public Health Service Act (42 
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 
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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. 
‘‘(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) 
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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. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $15,000,000 for each of fiscal years 2013 through 
2017. 
‘‘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. 
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