II 

113TH CONGRESS 

1ST SESSION S. 1247 

To improve and enhance research and programs on childhood cancer 

survivorship, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

JUNE 27, 2013 

Mr. REED 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 2013’’. 

7 SEC. 2. FINDINGS. 

8 Congress finds as follows: 


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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 by 2011, 

6 cure rates have increased to 78 percent for children 

7 and adolescents under age 20. 

8 (3) As of June 2013, there are more than 

9 360,000 childhood cancer survivors living in the 

10 United States. 

(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 report 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. 417H. 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) AUTHORIZATION OF APPROPRIATIONS.—There 

13 are authorized to be appropriated to carry out this section 

14 $15,000,000 for each of fiscal years 2014 through 2018. 

15 ‘‘SEC. 417H–1. WORKFORCE DEVELOPMENT COLLABO16 RATIVE ON MEDICAL AND PSYCHOSOCIAL 

17 CARE FOR CHILDHOOD CANCER SURVIVORS. 

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

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

20 Adult Cancer Survivorship Research and Quality of Life 

21 Act of 2013, the Secretary may convene a Workforce De22 velopment Collaborative on Medical and Psychosocial Care 

23 for Pediatric Cancer Survivors (referred to in this section 

24 as the ‘Collaborative’). The Collaborative shall be a cross25 specialty, multidisciplinary group composed of educators, 


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1 consumer and family advocates, and providers of psycho2 social and biomedical health services. 

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

4 submit to the Secretary a report establishing a plan to 

5 meet the following objectives for medical and psychosocial 

6 care workforce development: 

7 ‘‘(1) Identifying, refining, and broadly dissemi8 nating to healthcare educators information about 

9 workforce competencies, models, and preservices cur10 ricula relevant to providing medical and psychosocial 

11 services to individuals with pediatric cancers. 

12 ‘‘(2) Adapting curricula for continuing edu13 cation of the existing workforce using efficient work14 place-based learning approaches. 

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

16 trainers in teaching psychosocial health care using 

17 evidence-based teaching strategies. 

18 ‘‘(4) Strengthening the emphasis on psycho19 social healthcare in educational accreditation stand20 ards and professional licensing and certification 

21 exams by recommending revisions to the relevant 

22 oversight organizations. 

23 ‘‘(5) Evaluating the effectiveness of patient 

24 navigators in pediatric cancer survivorship care. 


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1 ‘‘(6) Evaluating the effectiveness of peer sup2 port programs in the psychosocial care of pediatric 

3 cancer patients and survivors. 

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

5 are authorized to be appropriated to carry out this section 

6 $5,000,000 for each of fiscal years 2014 through 2018.’’. 

7 (b) TECHNICAL AMENDMENT.— 

8 (1) IN GENERAL.—Section 3 of the 

9 Hematological Cancer Research Investment and 

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

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

12 and inserting ‘‘section 417C’’. 

13 (2) EFFECTIVE DATE.—The amendment made 

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

15 section 3 of the Hematological Cancer Research In16 vestment and Education Act of 2002 (Public Law 

17 107–172; 116 Stat. 541). 

Æ 


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