II 

112TH CONGRESS 

1ST SESSION S. 1613 

To improve and enhance research and programs on childhood cancer 

survivorship, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 22, 2011 

Mr. REED (for himself and Mrs. HUTCHISON) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

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 ‘‘Pediatric, Adolescent, 

5 and Young Adult Cancer Survivorship Research and Qual6 ity of Life Act of 2011’’. 

7 SEC. 2. FINDINGS. 

8 Congress finds as follows: 


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1 (1) An estimated 12,400 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 by 2011, 

6 cure rates have increased to 78 percent for children 

7 and adolescents under age 20. 

8 (3) The population of survivors of childhood 

9 cancers has grown dramatically, to more than 

10 300,000 individuals of all ages as of 2007. 

(4) As many as 2 11 ⁄3 of childhood cancer survivors 

12 are likely to experience at least one late effect of 

treatment, with as many as 1 13 ⁄4 experiencing a late 

14 effect that is serious or life-threatening. The most 

15 common late effects of childhood cancer are 

16 neurocognitive, psychological, cardiopulmonary, en17 docrine, and musculoskeletal effects and secondary 

18 malignancies. 

19 (5) The late effects of cancer treatment may 

20 change as treatments evolve, which means that the 

21 monitoring and treatment of cancer survivors may 

22 need to be modified on a routine basis. 

23 (6) The Institute of Medicine, in its reports on 

24 cancer survivorship entitled ‘‘Childhood Cancer Sur25 vivorship: Improving Care and Quality of Life’’, 


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1 states that an organized system of care and a meth2 od of care for pediatric cancer survivors is needed. 

3 SEC. 3. CANCER SURVIVORSHIP PROGRAMS. 

4 (a) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 

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

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

7 following: 

8 ‘‘SEC. 417G. PILOT PROGRAMS TO EXPLORE MODEL SYS9 TEMS OF CARE FOR PEDIATRIC CANCER SUR10 VIVORS. 

11 ‘‘(a) IN GENERAL.—The Secretary may make grants 

12 to eligible entities to establish pilot programs to develop, 

13 study, or evaluate model systems for monitoring and car14 ing for childhood cancer survivors. 

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

16 ‘eligible entity’ means— 

17 ‘‘(1) a medical school; 

18 ‘‘(2) a children’s hospital; 

19 ‘‘(3) a cancer center; or 

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

21 and expertise in treating survivors of childhood can22 cers. 

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

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

25 entity agrees— 


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1 ‘‘(1) to use the grant to establish a pilot pro2 gram to develop, study, or evaluate one or more 

3 model systems for monitoring and caring for cancer 

4 survivors; and 

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

6 such systems, to give special emphasis to— 

7 ‘‘(A) the design of protocols for different 

8 models of follow-up care, monitoring, and other 

9 survivorship programs (including peer support 

10 and mentoring programs); 

11 ‘‘(B) the development of various models for 

12 providing multidisciplinary care; 

13 ‘‘(C) the dissemination of information and 

14 the provision of training to health care pro15 viders about how to provide linguistically and 

16 culturally competent follow-up care and moni17 toring to cancer survivors and their families; 

18 ‘‘(D) the development of support programs 

19 to improve the quality of life of cancer sur20 vivors; 

21 ‘‘(E) the design of systems for the effective 

22 transfer of treatment information and care 

23 summaries from cancer care providers to other 

24 health care providers (including risk factors and 

25 a plan for recommended follow-up care); 


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1 ‘‘(F) the dissemination of the information 

2 and programs described in subparagraphs (A) 

3 through (E) to other health care providers (in4 cluding primary care physicians and internists) 

5 to cancer survivors and their families, where ap6 propriate; and 

7 ‘‘(G) the development of initiatives that 

8 promote the coordination and effective transi9 tion of care between cancer care providers, pri10 mary care physicians, and mental health profes11 sionals. 

12 ‘‘(d) FUNDING.—For each of fiscal years 2013 

13 through 2017, the Secretary may transfer out of funds 

14 otherwise appropriated to the Department of Health and 

15 Human Services for a fiscal year the amount necessary 

16 to carry out this section. 

17 ‘‘SEC. 417G–1. WORKFORCE DEVELOPMENT COLLABO18 RATIVE ON MEDICAL AND PSYCHOSOCIAL 

19 CARE FOR CHILDHOOD CANCER SURVIVORS. 

20 ‘‘(a) IN GENERAL.—Not later than 1 year after the 

21 date of enactment of the Pediatric, Adolescent, and Young 

22 Adult Cancer Survivorship Research and Quality of Life 

23 Act of 2011, the Secretary may convene a Workforce De24 velopment Collaborative on Medical and Psychosocial Care 

25 for Pediatric Cancer Survivors (referred to in this paraVerDate Mar 15 2010 03:53 Sep 24, 2011 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S1613.IS S1613

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1 graph as the ‘Collaborative’). The Collaborative shall be 

2 a cross-specialty, multidisciplinary group composed of edu3 cators, consumer and family advocates, and providers of 

4 psychosocial and biomedical health services. 

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

6 submit to the Secretary a report establishing a plan to 

7 meet the following objectives for medical and psychosocial 

8 care workforce development: 

9 ‘‘(1) Identifying, refining, and broadly dissemi10 nating to healthcare educators information about 

11 workforce competencies, models, and preservices cur12 ricula relevant to providing medical and psychosocial 

13 services to individuals with pediatric cancers. 

14 ‘‘(2) Adapting curricula for continuing edu15 cation of the existing workforce using efficient work16 place-based learning approaches. 

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

18 trainers in teaching psychosocial health care using 

19 evidence-based teaching strategies. 

20 ‘‘(4) Strengthening the emphasis on psycho21 social healthcare in educational accreditation stand22 ards and professional licensing and certification 

23 exams by recommending revisions to the relevant 

24 oversight organizations. 


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1 ‘‘(5) Evaluating the effectiveness of patient 

2 navigators in pediatric cancer survivorship care. 

3 ‘‘(6) Evaluating the effectiveness of peer sup4 port programs in the psychosocial care of pediatric 

5 cancer patients and survivors. 

6 ‘‘(c) FUNDING.—For each of fiscal years 2013 

7 through 2017, the Secretary may transfer out of funds 

8 otherwise appropriated to the Department of Health and 

9 Human Services for a fiscal year the amount necessary 

10 to carry out this section.’’. 

11 (b) TECHNICAL AMENDMENT.— 

12 (1) IN GENERAL.—Section 3 of the 

13 Hematological Cancer Research Investment and 

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

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

16 and inserting ‘‘section 417C’’. 

17 (2) EFFECTIVE DATE.—The amendment made 

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

19 section 3 of the Hematological Cancer Research In20 vestment and Education Act of 2002 (Public Law 

21 107–172; 116 Stat. 541). 

22 SEC. 4. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN23 CER SURVIVORS. 

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

25 U.S.C. 285a–11) is amended— 


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

2 AND AWARENESS’’ and inserting ‘‘RESEARCH, 

3 AWARENESS, AND SURVIVORSHIP’’; 

4 (2) in subsection (a)— 

5 (A) by redesignating paragraph (2) as 

6 paragraph (4); and 

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

8 following: 

9 ‘‘(2) RESEARCH ON CAUSES OF HEALTH DIS10 PARITIES IN PEDIATRIC CANCER SURVIVORSHIP.— 

11 ‘‘(A) GRANTS.—The Director of NIH, act12 ing through the Director of the Institute, in co13 ordination with ongoing research activities, may 

14 make grants to entities to conduct research re15 lating to— 

16 ‘‘(i) needs and outcomes of pediatric 

17 cancer survivors within minority or other 

18 medically underserved populations; 

19 ‘‘(ii) health disparities in pediatric 

20 cancer survivorship outcomes within minor21 ity or other medically underserved popu22 lations; 

23 ‘‘(iii) barriers that pediatric cancer 

24 survivors within minority or other mediVerDate Mar 15 2010 03:53 Sep 24, 2011 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S1613.IS S1613

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1 cally underserved populations face in re2 ceiving follow-up care; and 

3 ‘‘(iv) familial, socioeconomic, and 

4 other environmental factors and the impact 

5 of such factors on treatment outcomes and 

6 survivorship. 

7 ‘‘(B) BALANCED APPROACH.—In making 

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

9 on pediatric cancer survivors within minority or 

10 other medically underserved populations, the 

11 Director of NIH shall ensure that such research 

12 addresses both the physical and the psycho13 logical needs of such survivors. 

14 ‘‘(3) RESEARCH ON LATE EFFECTS AND FOL15 LOW-UP CARE FOR PEDIATRIC CANCER SUR16 VIVORS.—The Director of NIH, in coordination with 

17 ongoing research activities, shall conduct or support 

18 research on follow-up care for pediatric cancer sur19 vivors, with special emphasis given to— 

20 ‘‘(A) the development of indicators used 

21 for long-term patient tracking and analysis of 

22 the late effects of cancer treatment for pediatric 

23 cancer survivors; 

24 ‘‘(B) the identification of risk factors asso25 ciated with the late effects of cancer treatment; 


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1 ‘‘(C) the identification of predictors of 

2 neurocognitive and psychosocial outcomes; 

3 ‘‘(D) initiatives to protect cancer survivors 

4 from the late effects of cancer treatment; 

5 ‘‘(E) transitions in care for pediatric can6 cer survivors; 

7 ‘‘(F) training of professionals to provide 

8 linguistically and culturally competent follow-up 

9 care to pediatric cancer survivors; and 

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

11 and 

12 (3) in subsection (d), by striking ‘‘2013’’ and 

13 inserting ‘‘2017’’. 

Æ 


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