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 Virginia, Ms. KILROY, Ms. SCHAKOWSKY, and Mr. SESTAK) introduced the 

following bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To improve and enhance research and programs on childhood 

cancer survivorship, and for other purposes. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Childhood Cancer Sur5 vivorship Research and Quality of Life Act of 2009’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds as follows: 


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1 (1) There are almost 11,000,000 cancer sur2 vivors (those living with, through, and beyond can3 cer) in the United States. 

4 (2) Three out of every four American families 

5 will have at least one family member diagnosed with 

6 cancer. 

7 (3) The size of the population of survivors of 

8 childhood cancers has grown dramatically, to 

9 300,000 individuals of all ages as of 2007. 

10 (4) In 1960, only 4 percent of children with 

11 cancer survived more than 5 years, but treatment 

12 advances have changed the outlook for many chil13 dren diagnosed with cancer. 

14 (5) The 5-year survival rate for children with 

15 cancer improved from 56 percent for those diag16 nosed between 1974 and 1976 to 79 percent for 

17 those diagnosed between 1995 and 2000. 

18 (6) According to the Intercultural Cancer Coun19 cil, because of disparities in health care delivery 

20 throughout the cancer care continuum—from pre21 vention, screening, and diagnosis through cancer 

22 treatment, follow-up, and end-of-life care—minority, 

23 poor, and other medically underserved communities 

24 are more likely to be diagnosed with late stage dis25 ease, experience poorer treatment outcomes, have 


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1 shorter survival time with less quality of life, and ex2 perience a substantially greater likelihood of cancer 

3 death. 

4 (7) The Institute of Medicine, in its report enti5 tled ‘‘From Cancer Patient to Cancer Survivor: Lost 

6 in Transition’’, states that there are disparities in 

7 cancer survivorship. For instance, African-Ameri8 cans are underrepresented in the cancer survivor 

9 population, as they account for approximately 13 

10 percent of the United States population in 2000, but 

11 only 8 percent of the survivor population. 

12 (8) One in 640 adults from age 20 to 39 has 

13 a history of cancer. 

14 (9) As many as two-thirds of childhood cancer 

15 survivors are likely to experience at least one late ef16 fect of treatment, with as many as one-fourth expe17 riencing a late effect that is serious or life-threat18 ening. The most common late effects of childhood 

19 cancer are neurocognitive, psychological, cardiopul20 monary, endocrine, and musculoskeletal effects and 

21 second malignancies. 

22 (10) Some late effects are identified early in 

23 follow-up and are easily resolved, while others may 

24 become chronic problems in adulthood and may have 

25 serious consequences. 


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1 (11) The late effects of treatment may change 

2 as treatments evolve, which means that the moni3 toring and treatment of late effects may need to be 

4 modified on a routine basis. 

5 (12) The Institute of Medicine, in its reports on 

6 cancer survivorship entitled ‘‘Childhood Cancer Sur7 vivorship: Improving Care and Quality of Life’’ and 

8 ‘‘From Cancer Patient to Cancer Survivor: Lost in 

9 Transition’’, has offered a number of recommenda10 tions for improving monitoring and follow-up care 

11 for cancer survivors and enhancing the cancer survi12 vorship research agenda. 

13 (13) The Institute of Medicine has also noted 

14 the significant health insurance problems that may 

15 be experienced by survivors of childhood cancer as 

16 well as adult cancer survivors and has recommended 

17 that policy makers take action to ensure access to 

18 care, including appropriate follow-up care, by all 

19 cancer survivors. 

20 (14) The annual cost of cancer in the United 

21 States is almost $190,000,000,000 in direct and in22 direct costs. 

23 (15) In fiscal year 2001, the National Institutes 

24 of Health invested $38,000,000 in survivorship, or 

25 less than $4.25 per survivor. 


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1 SEC. 3. CDC CANCER CONTROL PROGRAMS. 

2 Part B of title III of the Public Health Service Act 

3 (42 U.S.C. 243 et seq.) is amended by inserting after sec4 tion 317T the following: 

5 ‘‘SEC. 317U. CANCER CONTROL PROGRAMS. 

6 ‘‘(a) IN GENERAL.—The Secretary, acting through 

7 the Director of the Centers for Disease Control and Pre8 vention, shall expand and intensify the cancer control pro9 grams of the Centers, including programs for conducting 

10 surveillance activities or supporting State comprehensive 

11 cancer control plans. 

12 ‘‘(b) CERTAIN ACTIVITIES.—In carrying out sub13 section (a), the Secretary shall— 

14 ‘‘(1) in collaboration with the Director of the 

15 National Cancer Institute, provide guidance to 

16 States on projects and interventions that may be in17 corporated into State comprehensive cancer control 

18 programs to improve the long-term health status of 

19 childhood cancer survivors, including childhood can20 cer survivors in minority and other medically under21 served populations; 

22 ‘‘(2) encourage States to incorporate strategies 

23 for improving systems of care for childhood cancer 

24 survivors and their families into State comprehensive 

25 cancer plans; and 


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1 ‘‘(3) collaborate with the Director of the Na2 tional Cancer Institute to improve existing surveil3 lance systems or develop appropriate new systems 

4 for tracking cancer survivors and assessing their 

5 health status and risk for other chronic and dis6 abling conditions. 

7 ‘‘(c) CHILDHOOD CANCER SURVIVORSHIP.— 

8 ‘‘(1) FOCUS ON CHILDHOOD CANCER SURVIVOR9 SHIP.—In conducting or supporting national, State, 

10 and local comprehensive cancer control programs 

11 through the Centers for Disease Control and Preven12 tion, the Secretary shall enhance such programs— 

13 ‘‘(A) to include a focus on childhood cancer 

14 survivorship, including survivorship in minority 

15 and other medically underserved populations; 

16 and 

17 ‘‘(B) to include childhood cancer survivor18 ship initiatives for improving— 

19 ‘‘(i) the monitoring of survivors of all 

20 forms of cancer; and 

21 ‘‘(ii) follow-up treatment for childhood 

22 cancer survivors. 

23 ‘‘(2) RELIANCE ON GUIDELINES.—In carrying 

24 out this subsection, the Secretary shall rely, where 


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1 appropriate, on existing guidelines for care of child2 hood cancer survivors.’’. 

3 SEC. 4. NIH CANCER SURVIVORSHIP PROGRAMS. 

4 (a) TECHNICAL AMENDMENT.— 

5 (1) IN GENERAL.—Section 3 of the 

6 Hematological Cancer Research Investment and 

7 Education Act of 2002 (Public Law 107–172; 116 

8 Stat. 541) is amended by striking ‘‘section 419C’’ 

9 and inserting ‘‘section 417C’’. 

10 (2) EFFECTIVE DATE.—The amendment made 

11 by paragraph (1) shall take effect as if included in 

12 section 3 of the Hematological Cancer Research In13 vestment and Education Act of 2002 (Public Law 

14 107–172; 116 Stat. 541). 

15 (b) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 

16 of part C of title IV of the Public Health Service Act (42 

17 U.S.C. 285 et seq.), as amended by subsection (a), is 

18 amended by adding at the end the following: 

19 ‘‘SEC. 417G. EXPANSION OF CANCER SURVIVORSHIP ACTIVI20 TIES. 

21 ‘‘(a) EXPANSION OF ACTIVITIES.—The Director of 

22 the Institute shall coordinate the activities of the National 

23 Institutes of Health with respect to cancer survivorship, 

24 including childhood cancer survivorship. 


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1 ‘‘(b) PRIORITY AREAS.—In carrying out subsection 

2 (a), the Director of the Institute shall give priority to the 

3 following: 

4 ‘‘(1) Comprehensive assessment of the preva5 lence and etiology of late effects of cancer and its 

6 treatment, including physical, neurocognitive, and 

7 psychosocial late effects. Such assessment shall in8 clude— 

9 ‘‘(A) development of a system for patient 

10 tracking and analysis; 

11 ‘‘(B) establishment of a system of tissue 

12 collection, banking, and analysis for childhood 

13 cancers, using guidelines from the Office of 

14 Biorepositories and Biospecimen Research; and 

15 ‘‘(C) coordination of, and resources for, as16 sessment and data collection. 

17 ‘‘(2) Identification of risk and protective factors 

18 related to the development of late effects of cancer. 

19 ‘‘(3) Identification of predictors of neu20 rocognitive and psychosocial outcomes, including 

21 quality of life, in cancer survivors and identification 

22 of qualify of life and other outcomes in family mem23 bers. 


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1 ‘‘(4) Development and implementation of inter2 vention studies for patients and families, including 

3 studies focusing on— 

4 ‘‘(A) preventive interventions during treat5 ment; 

6 ‘‘(B) interventions to lessen the impact of 

7 late effects; 

8 ‘‘(C) rehabilitative or remediative interven9 tions; 

10 ‘‘(D) interventions to promote health be11 haviors in long-term survivors; and 

12 ‘‘(E) interventions to improve health care 

13 utilization and access to linguistically and cul14 turally competent long-term follow-up care for 

15 childhood cancer survivors in minority and 

16 other medically underserved populations. 

17 ‘‘(c) GRANTS FOR RESEARCH ON CAUSES OF

18 HEALTH DISPARITIES IN CHILDHOOD CANCER SURVI19 VORSHIP.— 

20 ‘‘(1) GRANTS.—The Director of NIH, acting 

21 through the Director of the Institute, shall make 

22 grants to entities to conduct research relating to— 

23 ‘‘(A) childhood cancer survivors within mi24 nority populations; and 


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1 ‘‘(B) health disparities in cancer survivor2 ship outcomes within minority or other medi3 cally underserved populations. 

4 ‘‘(2) BALANCED APPROACH.—In making grants 

5 for research under paragraph (1)(A) on childhood 

6 cancer survivors within minority populations, the Di7 rector of NIH shall ensure that such research ad8 dresses both the physical and the psychosocial needs 

9 of such survivors. 

10 ‘‘(3) HEALTH DISPARITIES.—In making grants 

11 for research under paragraph (1)(B) on health dis12 parities in cancer survivorship outcomes within mi13 nority populations, the Director of NIH shall ensure 

14 that such research examines each of the following: 

15 ‘‘(A) Key adverse events after childhood 

16 cancer. 

17 ‘‘(B) Assessment of health and quality of 

18 life in childhood cancer survivors. 

19 ‘‘(C) Barriers to follow-up care to child20 hood cancer survivors. 

21 ‘‘(d) RESEARCH TO EVALUATE FOLLOW-UP CARE

22 FOR CHILDHOOD CANCER SURVIVORS.—The Director of 

23 NIH shall conduct or support research to evaluate systems 

24 of follow-up care for childhood cancer survivors, with spe25 cial emphasis given to— 


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1 ‘‘(1) transitions in care for childhood cancer 

2 survivors; 

3 ‘‘(2) those professionals who should be part of 

4 care teams for childhood cancer survivors; 

5 ‘‘(3) training of professionals to provide linguis6 tically and culturally competent follow-up care to 

7 childhood cancer survivors; and 

8 ‘‘(4) different models of follow-up care. 

9 ‘‘SEC. 417G–1. IMPROVING THE QUALITY OF FOLLOW-UP 

10 CARE FOR SURVIVORS OF CHILDHOOD CAN11 CERS AND THEIR FAMILIES. 

12 ‘‘(a) IN GENERAL.—The Secretary, in consultation 

13 with the Director of NIH, shall make grants to eligible 

14 entities to establish or improve training programs for 

15 health care professionals (including physicians, nurses, 

16 physician assistants, and mental health professionals)— 

17 ‘‘(1) to improve the quality of immediate and 

18 long-term follow-up care for survivors of childhood 

19 cancers and their families; and 

20 ‘‘(2) to ensure that such care is linguistically 

21 and culturally competent. 

22 ‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 

23 ‘eligible entity’ means— 

24 ‘‘(1) a medical school; 

25 ‘‘(2) a children’s hospital; 


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1 ‘‘(3) a cancer center; 

2 ‘‘(4) a hospital with one or more residency pro3 grams that serve a significant number of childhood 

4 cancer patients; 

5 ‘‘(5) a graduate training program for health 

6 professionals described in subsection (a) who will 

7 treat survivors of childhood cancers; or 

8 ‘‘(6) any other entity with significant experience 

9 and expertise in treating survivors of childhood can10 cers. 

11 ‘‘(c) DURATION.—Each grant under this section shall 

12 be for a period of 2 years. 

13 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

14 carry out this section, there is authorized to be appro15 priated $5,000,000 for each of fiscal years 2010 through 

16 2014. 

17 ‘‘SEC. 417G–2. STUDY OF PILOT PROGRAMS TO EXPLORE 

18 MODEL SYSTEMS OF CARE. 

19 ‘‘(a) IN GENERAL.—The Director of NIH, in con20 sultation with the Administrator of the Health Resources 

21 and Services Administration, shall make grants to eligible 

22 entities to establish pilot programs to develop, study, or 

23 evaluate model systems for monitoring and caring for 

24 childhood cancer survivors. 


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1 ‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 

2 ‘eligible entity’ means— 

3 ‘‘(1) a medical school; 

4 ‘‘(2) a children’s hospital; 

5 ‘‘(3) a cancer center; or 

6 ‘‘(4) any other entity with significant experience 

7 and expertise in treating survivors of childhood can8 cers. 

9 ‘‘(c) USE OF FUNDS.—The Director of NIH may 

10 make a grant under this section to an eligible entity only 

11 if the entity agrees— 

12 ‘‘(1) to use the grant to establish a pilot pro13 gram to develop, study, or evaluate one or more 

14 model systems for monitoring and caring for cancer 

15 survivors; and 

16 ‘‘(2) in developing, studying, and evaluating 

17 such systems, to give special emphasis to the fol18 lowing: 

19 ‘‘(A) Design of protocols for follow-up 

20 care, monitoring, and other survivorship pro21 grams (including peer support and mentoring 

22 programs). 

23 ‘‘(B) Dissemination of information to 

24 health care providers about how to provide lin25 guistically and culturally competent follow-up 


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1 care and monitoring to cancer survivors and 

2 their families. 

3 ‘‘(C) Dissemination of other information, 

4 as appropriate, to health care providers and to 

5 cancer survivors and their families. 

6 ‘‘(D) Development of support programs to 

7 improve the quality of life of cancer survivors. 

8 ‘‘(E) Design of systems for the effective 

9 transfer of treatment information from cancer 

10 care providers to other health care providers 

11 (including family practice physicians and inter12 nists) and to cancer survivors and their fami13 lies, where appropriate. 

14 ‘‘(F) Development of various models for 

15 providing multidisciplinary care. 

16 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

17 carry out this section, there is authorized to be appro18 priated $10,000,000 for each of fiscal years 2010 through 

19 2014.’’. 

20 SEC. 5. CLINICS FOR COMPREHENSIVE LONG-TERM FOL21 LOW-UP SERVICES FOR CHILDHOOD CANCER 

22 SURVIVORS. 

23 Part B of title III of the Public Health Service Act 

24 (42 U.S.C. 243 et seq.), as amended by section 3, is 

25 amended by inserting after section 317U the following: 


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1 ‘‘SEC. 317V. CLINICS FOR COMPREHENSIVE LONG-TERM 

2 FOLLOW-UP SERVICES FOR CHILDHOOD CAN3 CER SURVIVORS. 

4 ‘‘(a) IN GENERAL.—The Secretary shall make grants 

5 to eligible entities to pay all or a portion of the costs in6 curred during the first 4 years of establishing and oper7 ating a clinic for comprehensive long-term follow-up serv8 ices for childhood cancer survivors. 

9 ‘‘(b) ELIGIBLE ENTITIES.—In this section, the term 

10 ‘eligible entity’ means— 

11 ‘‘(1) a school of medicine; 

12 ‘‘(2) a children’s hospital; 

13 ‘‘(3) a cancer center; or 

14 ‘‘(4) any other entity with significant experience 

15 and expertise in treating survivors of childhood can16 cers. 

17 ‘‘(c) PRIORITY.—In making grants under this sec18 tion, the Secretary shall give priority to any eligible entity 

19 that demonstrates an expertise in improving access to care 

20 for minority and other medically underserved populations. 

21 ‘‘(d) USE OF FUNDS.—The Secretary may make a 

22 grant under this section to an eligible entity only if the 

23 entity agrees to use the grant to pay costs incurred during 

24 the first 4 years of establishing and operating a clinic for 

25 comprehensive long-term follow-up services for childhood 

26 cancer survivors. Such costs may include the costs of— 


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1 ‘‘(1) purchasing or leasing facilities; 

2 ‘‘(2) providing medical and psychosocial follow3 up services, including coordination with the patient’s 

4 primary care provider and oncologist in order to en5 sure that the unique medical needs of survivors are 

6 addressed; 

7 ‘‘(3) conducting research to improve care for 

8 childhood cancer survivors; 

9 ‘‘(4) providing linguistically and culturally com10 petent information to childhood cancer survivors and 

11 their families; and 

12 ‘‘(5) improving access by minority or other 

13 medically underserved populations to the best prac14 tices and care for childhood cancer survivors. 

15 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To 

16 carry out this section, there is authorized to be appro17 priated $15,000,000 for each of fiscal years 2010 through 

18 2014.’’. 

19 SEC. 6. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILD20 HOOD CANCER SURVIVORS. 

21 Part B of title III of the Public Health Service Act 

22 (42 U.S.C. 243 et seq.), as amended by section 5, is 

23 amended by inserting after section 317V the following: 


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1 ‘‘SEC. 317W. GRANTS TO IMPROVE ACCESS TO CARE FOR 

2 CHILDHOOD CANCER SURVIVORS. 

3 ‘‘(a) GRANTS.—The Secretary shall make grants to 

4 recognized childhood cancer professional and advocacy or5 ganizations to improve physical and psychosocial care for 

6 childhood cancer survivors, especially childhood cancer 

7 survivors in minority or other medically underserved popu8 lations. 

9 ‘‘(b) USE OF FUNDS.—The Secretary may make a 

10 grant under this section to an organization only if the or11 ganization agrees to use the grant to improve physical and 

12 psychosocial care for childhood cancer survivors, especially 

13 childhood cancer survivors in minority or other medically 

14 underserved populations. Such care may include— 

15 ‘‘(1) patient navigator programs; 

16 ‘‘(2) peer support programs; 

17 ‘‘(3) education and outreach for survivors and 

18 their families, including developing bilingual mate19 rials; 

20 ‘‘(4) follow-up care for uninsured and under21 insured survivors— 

22 ‘‘(A) to identify, prevent, or control side ef23 fects associated with cancer and its treatment; 

24 and 

25 ‘‘(B) to screen for cancer recurrence; and 


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1 ‘‘(5) assistance with transportation necessary to 

2 receive medical care for survivors and their families 

3 who lack adequate transportation resources. 

4 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—To 

5 carry out this section, there is authorized to be appro6 priated $10,000,000 for each of fiscal years 2010 through 

7 2014.’’. 

Æ 


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