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 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 vivors’ Quality of Life Act of 2013’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds the following: 

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1 (1) An estimated 13,500 children and adoles2 cents under age 20 are diagnosed with cancer each 

3 year. 

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

5 cancer survived more than 5 years, but today, cure 

6 rates have increased to over 80 percent for children 

7 and adolescents under age 20. 

8 (3) The population of survivors of childhood 

9 cancers has grown dramatically, to over 360,000 in10 dividuals of all ages as of 2012. 

11 (4) As many as two-thirds of childhood cancer 

12 survivors are likely to experience at least one late ef13 fect of treatment, with as many as one-fourth expe14 riencing a late effect that is serious or life-threat15 ening. The most common late effects of childhood 

16 cancer are neurocognitive, psychological, cardio17 pulmonary, endocrine, and musculoskeletal effects 

18 and secondary malignancies. 

19 (5) As a result of disparities in the delivery of 

20 cancer care, minority, low-income, and other medi21 cally underserved children are more likely to be diag22 nosed with late stage disease, experience poorer 

23 treatment outcomes, have shorter survival time with 

24 less quality of life, and experience a substantially 

25 greater likelihood of cancer death. 

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1 (6) The late effects of cancer treatment may 

2 change as therapies evolve, which means that the 

3 monitoring and care of cancer survivors may need to 

4 be modified on a routine basis. 

5 (7) Despite the intense stress caused by child6 hood cancer, there is a lack of standardized and co7 ordinated psychosocial care for the children and 

8 their families, from the date of diagnosis through 

9 treatment and survivorship. 

10 (8) The Institute of Medicine, in its report on 

11 cancer survivorship entitled ‘‘Childhood Cancer Sur12 vivorship: Improving Care and Quality of Life’’, 

13 states that an organized system of care and a meth14 od of care for pediatric cancer survivors is needed. 

15 (9) Focused and well-designed research and 

16 pilot health delivery programs can answer questions 

17 about the optimal ways to provide health care, fol18 low-up monitoring services, and survivorship care to 

19 those diagnosed with childhood cancer and con20 tribute to improvements in the quality of care and 

21 quality of life of those individuals. 

22 SEC. 3. CANCER SURVIVORSHIP PROGRAMS. 

23 (a) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 

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

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1 U.S.C. 285 et seq.) is amended by adding at the end the 

2 following: 

3 ‘‘SEC. 417G. PILOT PROGRAMS TO EXPLORE MODEL SYS4 TEMS OF CARE FOR PEDIATRIC CANCER SUR5 VIVORS. 

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

7 to eligible entities to establish pilot programs to develop, 

8 study, or evaluate model systems for monitoring and car9 ing for childhood cancer survivors. 

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

11 ‘eligible entity’ means— 

12 ‘‘(1) a medical school; 

13 ‘‘(2) a children’s hospital; 

14 ‘‘(3) a cancer center; or 

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

16 and expertise in treating survivors of childhood can17 cers. 

18 ‘‘(c) USE OF FUNDS.—The Secretary may make a 

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

20 entity agrees— 

21 ‘‘(1) to use the grant to establish a pilot pro22 gram to develop, study, or evaluate one or more 

23 model systems for monitoring and caring for cancer 

24 survivors; and 

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

2 such systems, to give special emphasis to the fol3 lowing: 

4 ‘‘(A) Design of protocols for different mod5 els of follow-up care, monitoring, and other sur6 vivorship programs (including peer support and 

7 mentoring programs). 

8 ‘‘(B) Development of various models for 

9 providing multidisciplinary care. 

10 ‘‘(C) Dissemination of information and the 

11 provision of training to health care providers 

12 about how to provide linguistically and cul13 turally competent follow-up care and monitoring 

14 to cancer survivors and their families. 

15 ‘‘(D) Development of support programs to 

16 improve the quality of life of cancer survivors. 

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

18 transfer of treatment information and care 

19 summaries from cancer care providers to other 

20 health care providers (including risk factors and 

21 a plan for recommended follow-up care). 

22 ‘‘(F) Dissemination of the information and 

23 programs described in subparagraphs (A) 

24 through (E) to other health care providers (in25 cluding primary care physicians and internists) 

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1 and to cancer survivors and their families, 

2 where appropriate. 

3 ‘‘(G) Development of initiatives that pro4 mote the coordination and effective transition of 

5 care between cancer care providers, primary 

6 care physicians, and mental health profes7 sionals. 

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

9 carry out this section, there is authorized to be appro10 priated $15,000,000 for each of fiscal years 2015 through 

11 2019. 

12 ‘‘SEC. 417G–1. WORKFORCE DEVELOPMENT COLLABO13 RATIVE ON MEDICAL AND PSYCHOSOCIAL 

14 CARE FOR CHILDHOOD CANCER SURVIVORS. 

15 ‘‘(a) IN GENERAL.—The Secretary shall, not later 

16 than 1 year after the date of enactment of this Act, con17 vene a Workforce Development Collaborative on Medical 

18 and Psychosocial Care for Pediatric Cancer Survivors (re19 ferred to in this paragraph as the ‘Collaborative’). The 

20 Collaborative shall be a cross-specialty, multidisciplinary 

21 group composed of educators, consumer and family advo22 cates, and providers of psychosocial and biomedical health 

23 services. 

24 ‘‘(b) GOALS AND REPORTS.—The Collaborative shall 

25 submit to the Secretary a report establishing a plan to 

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1 meet the following objectives for medical and psychosocial 

2 care workforce development: 

3 ‘‘(1) Identifying, refining, and broadly dissemi4 nating to health care educators information about 

5 workforce competencies, models, and preservices cur6 ricula relevant to providing medical and psychosocial 

7 services to persons with pediatric cancers. 

8 ‘‘(2) Adapting curricula for continuing edu9 cation of the existing workforce using efficient work10 place-based learning approaches. 

11 ‘‘(3) Developing the skills of faculty and other 

12 trainers in teaching psychosocial health care using 

13 evidence-based teaching strategies. 

14 ‘‘(4) Strengthening the emphasis on psycho15 social health care in educational accreditation stand16 ards and professional licensing and certification 

17 exams by recommending revisions to the relevant 

18 oversight organizations. 

19 ‘‘(5) Evaluating the effectiveness of patient 

20 navigators in pediatric cancer survivorship care. 

21 ‘‘(6) Evaluating the effectiveness of peer sup22 port programs in the psychosocial care of pediatric 

23 cancer patients and survivors. 

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

25 carry out this section, there is authorized to be appromstockstill on DSK4VPTVN1PROD with BILLS

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1 priated $5,000,000 for each of fiscal years 2015 through 

2 2019.’’. 

3 (b) TECHNICAL AMENDMENT.— 

4 (1) IN GENERAL.—Section 3 of the 

5 Hematological Cancer Research Investment and 

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

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

8 and inserting ‘‘section 417C’’. 

9 (2) EFFECTIVE DATE.—The amendment made 

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

11 section 3 of the Hematological Cancer Research In12 vestment and Education Act of 2002 (Public Law 

13 107–172; 116 Stat. 541). 

14 SEC. 4. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN15 CER SURVIVORS. 

16 Section 417E of the Public Health Service Act (42 

17 U.S.C. 285a–11) is amended— 

18 (1) in the heading, by striking ‘‘RESEARCH

19 AND AWARENESS’’ and inserting ‘‘RESEARCH, 

20 AWARENESS, AND SURVIVORSHIP’’; 

21 (2) in subsection (a)— 

22 (A) by redesignating paragraph (2) as 

23 paragraph (4); and 

24 (B) by inserting after paragraph (1) the 

25 following: 

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1 ‘‘(2) RESEARCH ON CAUSES OF HEALTH DIS2 PARITIES IN PEDIATRIC CANCER SURVIVORSHIP.— 

3 ‘‘(A) GRANTS.—The Director of NIH, act4 ing through the Director of the Institute, in co5 ordination with ongoing research activities, 

6 shall make grants to entities to conduct re7 search relating to— 

8 ‘‘(i) needs and outcomes of pediatric 

9 cancer survivors within minority or other 

10 medically underserved populations; 

11 ‘‘(ii) health disparities in pediatric 

12 cancer survivorship outcomes within minor13 ity or other medically underserved popu14 lations; 

15 ‘‘(iii) barriers that pediatric cancer 

16 survivors within minority or other medi17 cally underserved populations face in re18 ceiving follow-up care; and 

19 ‘‘(iv) familial, socioeconomic, and 

20 other environmental factors and the impact 

21 of such factors on treatment outcomes and 

22 survivorship. 

23 ‘‘(B) BALANCED APPROACH.—In making 

24 grants for research under subparagraph (A)(i) 

25 on pediatric cancer survivors within minority or 

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1 other medically underserved populations, the 

2 Director of NIH shall ensure that such research 

3 addresses both the physical and the psycho4 logical needs of such survivors. 

5 ‘‘(3) RESEARCH ON LATE EFFECTS AND FOL6 LOW-UP CARE FOR PEDIATRIC CANCER SUR7 VIVORS.—The Director of NIH, in coordination with 

8 ongoing research activities, shall conduct or support 

9 research on follow-up care for pediatric cancer sur10 vivors, with special emphasis given to— 

11 ‘‘(A) the development of indicators used 

12 for long-term patient tracking and analysis of 

13 the late effects of cancer treatment for pediatric 

14 cancer survivors; 

15 ‘‘(B) the identification of risk factors asso16 ciated with the late effects of cancer treatment; 

17 ‘‘(C) the identification of predictors of 

18 neurocognitive and psychosocial outcomes; 

19 ‘‘(D) initiatives to protect cancer survivors 

20 from the late effects of cancer treatment; 

21 ‘‘(E) transitions in care for pediatric can22 cer survivors; 

23 ‘‘(F) training of professionals to provide 

24 linguistically and culturally competent follow-up 

25 care to pediatric cancer survivors; and 

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1 ‘‘(G) different models of follow-up care.’’; 

2 and 

3 (3) in subsection (d)— 

4 (A) by striking ‘‘this section and’’ and in5 serting ‘‘subsection (a)(1), subsection (b), and’’; 

6 (B) by striking ‘‘2013’’ and inserting 

7 ‘‘2019’’; and 

8 (C) by inserting after the second sentence 

9 the following: ‘‘For purposes of carrying out 

10 subsections (a)(2) and (a)(3), there is author11 ized to be appropriated $10,000,000 for each of 

12 fiscal years 2015 through 2019.’’. 

13 SEC. 5. COMPREHENSIVE LONG-TERM FOLLOW-UP SERV14 ICES FOR PEDIATRIC CANCER SURVIVORS. 

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

16 (42 U.S.C. 243 et seq.) is amended by inserting after sec17 tion 317T the following: 

18 ‘‘SEC. 317U. CLINICS FOR COMPREHENSIVE LONG-TERM 

19 FOLLOW-UP SERVICES FOR PEDIATRIC CAN20 CER SURVIVORS. 

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

22 to eligible entities to establish and operate a clinic for com23 prehensive long-term follow-up services for pediatric can24 cer survivors. 

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

2 ‘eligible entity’ means— 

3 ‘‘(1) a school of medicine; 

4 ‘‘(2) a children’s hospital; 

5 ‘‘(3) a cancer center; or 

6 ‘‘(4) any other entity determined by the Sec7 retary to have significant experience and expertise 

8 in— 

9 ‘‘(A) treating pediatric, adolescent, and 

10 young adult cancers; or 

11 ‘‘(B) integrating medical and psychosocial 

12 services for pediatric, adolescent, and young 

13 adult cancer survivors and their families. 

14 ‘‘(c) USE OF FUNDS.—The Secretary may make a 

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

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

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

18 comprehensive, long-term, follow-up services for pediatric 

19 cancer survivors, which may include the costs of— 

20 ‘‘(1) providing medical and psychosocial follow21 up services, including coordination with the patient’s 

22 primary care provider and oncologist in order to en23 sure that the medical needs of survivors are ad24 dressed, and providing linguistically and culturally 

25 competent information to survivors and families with 

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1 appropriate outreach to medically underserved popu2 lations; 

3 ‘‘(2) the construction, expansion, and mod4 ernization of facilities; 

5 ‘‘(3) acquiring and leasing facilities and equip6 ment (including paying the costs of amortizing the 

7 principal of, and paying the interest on, loans for 

8 such facilities and equipment) to support or further 

9 the operation of the grantee; and 

10 ‘‘(4) the construction and structural modifica11 tion (including equipment acquisition) of facilities to 

12 permit the integrated delivery of ongoing medical 

13 and psychosocial care to pediatric cancer survivors 

14 and their families at a single service site. 

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

16 carry out this section, there is authorized to be appro17 priated $10,000,000 for each of fiscal years 2015 through 

18 2019.’’. 

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