I 
111TH CONGRESS 
1ST SESSION H. R. 2109 
To improve and enhance research and programs on childhood cancer 
survivorship, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
APRIL 27, 2009 
Ms. SPEIER (for herself, Mrs. BONO MACK, Mrs. CAPPS, Mr. MORAN of Vir-
ginia, Ms. KILROY, Ms. SCHAKOWSKY, and Mr. SESTAK) introduced the 
following 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-
vivorship Research and Quality of Life Act of 2009’’. 
SEC. 2. FINDINGS. 
The Congress finds as follows: 
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(1) There are almost 11,000,000 cancer sur-
vivors (those living with, through, and beyond can-
cer) in the United States. 
(2) Three out of every four American families 
will have at least one family member diagnosed with 
cancer. 
(3) The size of the population of survivors of 
childhood cancers has grown dramatically, to 
300,000 individuals of all ages as of 2007. 
(4) In 1960, only 4 percent of children with 
cancer survived more than 5 years, but treatment 
advances have changed the outlook for many chil-
dren diagnosed with cancer. 
(5) The 5-year survival rate for children with 
cancer improved from 56 percent for those diag-
nosed between 1974 and 1976 to 79 percent for 
those diagnosed between 1995 and 2000. 
(6) According to the Intercultural Cancer Coun-
cil, because of disparities in health care delivery 
throughout the cancer care continuum—from pre-
vention, screening, and diagnosis through cancer 
treatment, follow-up, and end-of-life care—minority, 
poor, and other medically underserved communities 
are more likely to be diagnosed with late stage dis-
ease, experience poorer treatment outcomes, have 
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shorter survival time with less quality of life, and ex-
perience a substantially greater likelihood of cancer 
death. 
(7) The Institute of Medicine, in its report enti-
tled ‘‘From Cancer Patient to Cancer Survivor: Lost 
in Transition’’, states that there are disparities in 
cancer survivorship. For instance, African-Ameri-
cans are underrepresented in the cancer survivor 
population, as they account for approximately 13 
percent of the United States population in 2000, but 
only 8 percent of the survivor population. 
(8) One in 640 adults from age 20 to 39 has 
a history of cancer. 
(9) 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, cardiopul-
monary, endocrine, and musculoskeletal effects and 
second malignancies. 
(10) Some late effects are identified early in 
follow-up and are easily resolved, while others may 
become chronic problems in adulthood and may have 
serious consequences. 
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(11) The late effects of treatment may change 
as treatments evolve, which means that the moni-
toring and treatment of late effects may need to be 
modified on a routine basis. 
(12) The Institute of Medicine, in its reports on 
cancer survivorship entitled ‘‘Childhood Cancer Sur-
vivorship: Improving Care and Quality of Life’’ and 
‘‘From Cancer Patient to Cancer Survivor: Lost in 
Transition’’, has offered a number of recommenda-
tions for improving monitoring and follow-up care 
for cancer survivors and enhancing the cancer survi-
vorship research agenda. 
(13) The Institute of Medicine has also noted 
the significant health insurance problems that may 
be experienced by survivors of childhood cancer as 
well as adult cancer survivors and has recommended 
that policy makers take action to ensure access to 
care, including appropriate follow-up care, by all 
cancer survivors. 
(14) The annual cost of cancer in the United 
States is almost $190,000,000,000 in direct and in-
direct costs. 
(15) In fiscal year 2001, the National Institutes 
of Health invested $38,000,000 in survivorship, or 
less than $4.25 per survivor. 
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SEC. 3. CDC CANCER CONTROL PROGRAMS. 
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. CANCER CONTROL PROGRAMS. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, shall expand and intensify the cancer control pro-
grams of the Centers, including programs for conducting 
surveillance activities or supporting State comprehensive 
cancer control plans. 
‘‘(b) CERTAIN ACTIVITIES.—In carrying out sub-
section (a), the Secretary shall— 
‘‘(1) in collaboration with the Director of the 
National Cancer Institute, provide guidance to 
States on projects and interventions that may be in-
corporated into State comprehensive cancer control 
programs to improve the long-term health status of 
childhood cancer survivors, including childhood can-
cer survivors in minority and other medically under-
served populations; 
‘‘(2) encourage States to incorporate strategies 
for improving systems of care for childhood cancer 
survivors and their families into State comprehensive 
cancer plans; and 
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‘‘(3) collaborate with the Director of the Na-
tional Cancer Institute to improve existing surveil-
lance systems or develop appropriate new systems 
for tracking cancer survivors and assessing their 
health status and risk for other chronic and dis-
abling conditions. 
‘‘(c) CHILDHOOD CANCER SURVIVORSHIP.— 
‘‘(1) FOCUS ON CHILDHOOD CANCER SURVIVOR-
SHIP.—In conducting or supporting national, State, 
and local comprehensive cancer control programs 
through the Centers for Disease Control and Preven-
tion, the Secretary shall enhance such programs— 
‘‘(A) to include a focus on childhood cancer 
survivorship, including survivorship in minority 
and other medically underserved populations; 
and 
‘‘(B) to include childhood cancer survivor-
ship initiatives for improving— 
‘‘(i) the monitoring of survivors of all 
forms of cancer; and 
‘‘(ii) follow-up treatment for childhood 
cancer survivors. 
‘‘(2) RELIANCE ON GUIDELINES.—In carrying 
out this subsection, the Secretary shall rely, where 
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appropriate, on existing guidelines for care of child-
hood cancer survivors.’’. 
SEC. 4. NIH CANCER SURVIVORSHIP PROGRAMS. 
(a) 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). 
(b) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 
of part C of title IV of the Public Health Service Act (42 
U.S.C. 285 et seq.), as amended by subsection (a), is 
amended by adding at the end the following: 
‘‘SEC. 417G. EXPANSION OF CANCER SURVIVORSHIP ACTIVI-
TIES. 
‘‘(a) EXPANSION OF ACTIVITIES.—The Director of 
the Institute shall coordinate the activities of the National 
Institutes of Health with respect to cancer survivorship, 
including childhood cancer survivorship. 
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‘‘(b) PRIORITY AREAS.—In carrying out subsection 
(a), the Director of the Institute shall give priority to the 
following: 
‘‘(1) Comprehensive assessment of the preva-
lence and etiology of late effects of cancer and its 
treatment, including physical, neurocognitive, and 
psychosocial late effects. Such assessment shall in-
clude— 
‘‘(A) development of a system for patient 
tracking and analysis; 
‘‘(B) establishment of a system of tissue 
collection, banking, and analysis for childhood 
cancers, using guidelines from the Office of 
Biorepositories and Biospecimen Research; and 
‘‘(C) coordination of, and resources for, as-
sessment and data collection. 
‘‘(2) Identification of risk and protective factors 
related to the development of late effects of cancer. 
‘‘(3) 
Identification 
of 
predictors 
of 
neu-
rocognitive and psychosocial outcomes, including 
quality of life, in cancer survivors and identification 
of qualify of life and other outcomes in family mem-
bers. 
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‘‘(4) Development and implementation of inter-
vention studies for patients and families, including 
studies focusing on— 
‘‘(A) preventive interventions during treat-
ment; 
‘‘(B) interventions to lessen the impact of 
late effects; 
‘‘(C) rehabilitative or remediative interven-
tions; 
‘‘(D) interventions to promote health be-
haviors in long-term survivors; and 
‘‘(E) interventions to improve health care 
utilization and access to linguistically and cul-
turally competent long-term follow-up care for 
childhood cancer survivors in minority and 
other medically underserved populations. 
‘‘(c) GRANTS
FOR
RESEARCH
ON
CAUSES
OF 
HEALTH DISPARITIES IN CHILDHOOD CANCER SURVI-
VORSHIP.— 
‘‘(1) GRANTS.—The Director of NIH, acting 
through the Director of the Institute, shall make 
grants to entities to conduct research relating to— 
‘‘(A) childhood cancer survivors within mi-
nority populations; and 
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‘‘(B) health disparities in cancer survivor-
ship outcomes within minority or other medi-
cally underserved populations. 
‘‘(2) BALANCED APPROACH.—In making grants 
for research under paragraph (1)(A) on childhood 
cancer survivors within minority populations, the Di-
rector of NIH shall ensure that such research ad-
dresses both the physical and the psychosocial needs 
of such survivors. 
‘‘(3) HEALTH DISPARITIES.—In making grants 
for research under paragraph (1)(B) on health dis-
parities in cancer survivorship outcomes within mi-
nority populations, the Director of NIH shall ensure 
that such research examines each of the following: 
‘‘(A) Key adverse events after childhood 
cancer. 
‘‘(B) Assessment of health and quality of 
life in childhood cancer survivors. 
‘‘(C) Barriers to follow-up care to child-
hood cancer survivors. 
‘‘(d) RESEARCH TO EVALUATE FOLLOW-UP CARE 
FOR CHILDHOOD CANCER SURVIVORS.—The Director of 
NIH shall conduct or support research to evaluate systems 
of follow-up care for childhood cancer survivors, with spe-
cial emphasis given to— 
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‘‘(1) transitions in care for childhood cancer 
survivors; 
‘‘(2) those professionals who should be part of 
care teams for childhood cancer survivors; 
‘‘(3) training of professionals to provide linguis-
tically and culturally competent follow-up care to 
childhood cancer survivors; and 
‘‘(4) different models of follow-up care. 
‘‘SEC. 417G–1. IMPROVING THE QUALITY OF FOLLOW-UP 
CARE FOR SURVIVORS OF CHILDHOOD CAN-
CERS AND THEIR FAMILIES. 
‘‘(a) IN GENERAL.—The Secretary, in consultation 
with the Director of NIH, shall make grants to eligible 
entities to establish or improve training programs for 
health care professionals (including physicians, nurses, 
physician assistants, and mental health professionals)— 
‘‘(1) to improve the quality of immediate and 
long-term follow-up care for survivors of childhood 
cancers and their families; and 
‘‘(2) to ensure that such care is linguistically 
and culturally competent. 
‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 
‘eligible entity’ means— 
‘‘(1) a medical school; 
‘‘(2) a children’s hospital; 
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‘‘(3) a cancer center; 
‘‘(4) a hospital with one or more residency pro-
grams that serve a significant number of childhood 
cancer patients; 
‘‘(5) a graduate training program for health 
professionals described in subsection (a) who will 
treat survivors of childhood cancers; or 
‘‘(6) any other entity with significant experience 
and expertise in treating survivors of childhood can-
cers. 
‘‘(c) DURATION.—Each grant under this section shall 
be for a period of 2 years. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $5,000,000 for each of fiscal years 2010 through 
2014. 
‘‘SEC. 417G–2. STUDY OF PILOT PROGRAMS TO EXPLORE 
MODEL SYSTEMS OF CARE. 
‘‘(a) IN GENERAL.—The Director of NIH, in con-
sultation with the Administrator of the Health Resources 
and Services Administration, shall make grants to eligible 
entities to establish pilot programs to develop, study, or 
evaluate model systems for monitoring and caring for 
childhood cancer survivors. 
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‘‘(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 Director of NIH 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 
‘‘(2) in developing, studying, and evaluating 
such systems, to give special emphasis to the fol-
lowing: 
‘‘(A) Design of protocols for follow-up 
care, monitoring, and other survivorship pro-
grams (including peer support and mentoring 
programs). 
‘‘(B) Dissemination of information to 
health care providers about how to provide lin-
guistically and culturally competent follow-up 
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care and monitoring to cancer survivors and 
their families. 
‘‘(C) Dissemination of other information, 
as appropriate, to health care providers and 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 from cancer 
care providers to other health care providers 
(including family practice physicians and inter-
nists) and to cancer survivors and their fami-
lies, where appropriate. 
‘‘(F) Development of various models for 
providing multidisciplinary care. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $10,000,000 for each of fiscal years 2010 through 
2014.’’. 
SEC. 5. CLINICS FOR COMPREHENSIVE LONG-TERM FOL-
LOW-UP SERVICES FOR CHILDHOOD CANCER 
SURVIVORS. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.), as amended by section 3, is 
amended by inserting after section 317U the following: 
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‘‘SEC. 317V. CLINICS FOR COMPREHENSIVE LONG-TERM 
FOLLOW-UP SERVICES FOR CHILDHOOD CAN-
CER SURVIVORS. 
‘‘(a) IN GENERAL.—The Secretary shall make grants 
to eligible entities to pay all or a portion of the costs in-
curred during the first 4 years of establishing and oper-
ating a clinic for comprehensive long-term follow-up serv-
ices for childhood cancer survivors. 
‘‘(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 with significant experience 
and expertise in treating survivors of childhood can-
cers. 
‘‘(c) PRIORITY.—In making grants under this sec-
tion, the Secretary shall give priority to any eligible entity 
that demonstrates an expertise in improving access to care 
for minority and other medically underserved populations. 
‘‘(d) 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 childhood 
cancer survivors. Such costs may include the costs of— 
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‘‘(1) purchasing or leasing facilities; 
‘‘(2) 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 unique medical needs of survivors are 
addressed; 
‘‘(3) conducting research to improve care for 
childhood cancer survivors; 
‘‘(4) providing linguistically and culturally com-
petent information to childhood cancer survivors and 
their families; and 
‘‘(5) improving access by minority or other 
medically underserved populations to the best prac-
tices and care for childhood cancer survivors. 
‘‘(e) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $15,000,000 for each of fiscal years 2010 through 
2014.’’. 
SEC. 6. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILD-
HOOD CANCER SURVIVORS. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.), as amended by section 5, is 
amended by inserting after section 317V the following: 
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‘‘SEC. 317W. GRANTS TO IMPROVE ACCESS TO CARE FOR 
CHILDHOOD CANCER SURVIVORS. 
‘‘(a) GRANTS.—The Secretary shall make grants to 
recognized childhood cancer professional and advocacy or-
ganizations to improve physical and psychosocial care for 
childhood cancer survivors, especially childhood cancer 
survivors in minority or other medically underserved popu-
lations. 
‘‘(b) USE OF FUNDS.—The Secretary may make a 
grant under this section to an organization only if the or-
ganization agrees to use the grant to improve physical and 
psychosocial care for childhood cancer survivors, especially 
childhood cancer survivors in minority or other medically 
underserved populations. Such care may include— 
‘‘(1) patient navigator programs; 
‘‘(2) peer support programs; 
‘‘(3) education and outreach for survivors and 
their families, including developing bilingual mate-
rials; 
‘‘(4) follow-up care for uninsured and under-
insured survivors— 
‘‘(A) to identify, prevent, or control side ef-
fects associated with cancer and its treatment; 
and 
‘‘(B) to screen for cancer recurrence; and 
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‘‘(5) assistance with transportation necessary to 
receive medical care for survivors and their families 
who lack adequate transportation resources. 
‘‘(c) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $10,000,000 for each of fiscal years 2010 through 
2014.’’. 
Æ 
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