I 

112TH CONGRESS 

1ST SESSION H. R. 3015 

To improve and enhance research and programs on childhood cancer 

survivorship, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 22, 2011 

Ms. SPEIER (for herself, Mr. LATHAM, Mr. MCCAUL, Mr. VAN HOLLEN, Mr. 

MORAN, Mr. KING of New York, Ms. BORDALLO, Ms. WOOLSEY, and Ms. 

FUDGE) 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 ‘‘Pediatric, Adolescent, 

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

7 SEC. 2. FINDINGS. 

8 Congress finds the following: 


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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 today, cure 

6 rates have increased to 78 percent for children and 

7 adolescents under age 20. 

8 (3) The population of survivors of childhood 

9 cancers has grown dramatically, to over 300,000 in10 dividuals of all ages as of 2007. 

11 (4) Whereas as many as two-thirds of childhood 

12 cancer survivors are likely to experience at least one 

13 late effect of treatment, with as many as one-fourth 

14 experiencing a late effect that is serious or life15 threatening. The most common late effects of child16 hood cancer are neurocognitive, psychological, 

17 cardiopulmonary, endocrine, and musculoskeletal ef18 fects and secondary malignancies. 

19 (5) According to the Intercultural Cancer Coun20 cil, because of disparities in health care delivery 

21 throughout the cancer care continuum, minority, 

22 poor, and other medically underserved communities 

23 are more likely to be diagnosed with late stage dis24 ease, experience poorer treatment outcomes, have 

25 shorter survival time with less quality of life, and exVerDate Mar 15 2010 03:21 Sep 27, 2011 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H3015.IH H3015

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1 perience a substantially greater likelihood of cancer 

2 death. 

3 (6) The late effects of cancer treatment may 

4 change as treatments evolve, which means that the 

5 monitoring and treatment of cancer survivors may 

6 need to be modified on a routine basis. 

7 (7) Despite the trauma caused by childhood 

8 cancer, there is a lack of standardized and coordi9 nated psychosocial care for the children and their 

10 families, from the date of diagnosis through treat11 ment and survivorship. 

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

13 cancer survivorship entitled ‘‘Childhood Cancer Sur14 vivorship: Improving Care and Quality of Life’’, 

15 states that an organized system of care and a meth16 od of care for pediatric cancer survivors is needed. 

17 (9) Focused and well-designed research and 

18 pilot health delivery programs can answer questions 

19 about the optimal ways to provide health care, fol20 low-up monitoring services, and survivorship care to 

21 those diagnosed with childhood cancer and con22 tribute to improvements in the quality of care and 

23 quality of life of those individuals. 


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1 SEC. 3. CANCER SURVIVORSHIP PROGRAMS. 

2 (a) CANCER SURVIVORSHIP PROGRAMS.—Subpart 1 

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

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

5 following: 

6 ‘‘SEC. 417G. PILOT PROGRAMS TO EXPLORE MODEL SYS7 TEMS OF CARE FOR PEDIATRIC CANCER SUR8 VIVORS. 

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

10 to eligible entities to establish pilot programs to develop, 

11 study, or evaluate model systems for monitoring and car12 ing for childhood cancer survivors. 

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

14 ‘eligible entity’ means— 

15 ‘‘(1) a medical school; 

16 ‘‘(2) a children’s hospital; 

17 ‘‘(3) a cancer center; or 

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

19 and expertise in treating survivors of childhood can20 cers. 

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

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

23 entity agrees— 

24 ‘‘(1) to use the grant to establish a pilot pro25 gram to develop, study, or evaluate one or more 


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1 model systems for monitoring and caring for cancer 

2 survivors; and 

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

4 such systems, to give special emphasis to the fol5 lowing: 

6 ‘‘(A) Design of protocols for different mod7 els of follow-up care, monitoring, and other sur8 vivorship programs (including peer support and 

9 mentoring programs). 

10 ‘‘(B) Development of various models for 

11 providing multidisciplinary care. 

12 ‘‘(C) Dissemination of information and the 

13 provision of training to health care providers 

14 about how to provide linguistically and cul15 turally competent follow-up care and monitoring 

16 to cancer survivors and their families. 

17 ‘‘(D) Development of support programs to 

18 improve the quality of life of cancer survivors. 

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

20 transfer of treatment information and care 

21 summaries from cancer care providers to other 

22 health care providers (including risk factors and 

23 a plan for recommended follow-up care). 

24 ‘‘(F) Dissemination of the information and 

25 programs described in subparagraphs (A) 


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1 through (E) to other health care providers (in2 cluding primary care physicians and internists) 

3 and to cancer survivors and their families, 

4 where appropriate. 

5 ‘‘(G) Development of initiatives that pro6 mote the coordination and effective transition of 

7 care between cancer care providers, primary 

8 care physicians, and mental health profes9 sionals. 

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

11 carry out this section, there is authorized to be appro12 priated $15,000,000 for each of fiscal years 2013 through 

13 2017. 

14 ‘‘SEC. 417G–1. WORKFORCE DEVELOPMENT COLLABO15 RATIVE ON MEDICAL AND PSYCHOSOCIAL 

16 CARE FOR CHILDHOOD CANCER SURVIVORS. 

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

18 than 1 year after the date of enactment of this Act, con19 vene a Workforce Development Collaborative on Medical 

20 and Psychosocial Care for Pediatric Cancer Survivors (re21 ferred to in this paragraph as the ‘Collaborative’). The 

22 Collaborative shall be a cross-specialty, multidisciplinary 

23 group composed of educators, consumer and family advo24 cates, and providers of psychosocial and biomedical health 

25 services. 


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

2 submit to the Secretary a report establishing a plan to 

3 meet the following objectives for medical and psychosocial 

4 care workforce development: 

5 ‘‘(1) Identifying, refining, and broadly dissemi6 nating to health care educators information about 

7 workforce competencies, models, and preservices cur8 ricula relevant to providing medical and psychosocial 

9 services to persons with pediatric cancers. 

10 ‘‘(2) Adapting curricula for continuing edu11 cation of the existing workforce using efficient work12 place-based learning approaches. 

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

14 trainers in teaching psychosocial health care using 

15 evidence-based teaching strategies. 

16 ‘‘(4) Strengthening the emphasis on psycho17 social health care in educational accreditation stand18 ards and professional licensing and certification 

19 exams by recommending revisions to the relevant 

20 oversight organizations. 

21 ‘‘(5) Evaluating the effectiveness of patient 

22 navigators in pediatric cancer survivorship care. 

23 ‘‘(6) Evaluating the effectiveness of peer sup24 port programs in the psychosocial care of pediatric 

25 cancer patients and survivors. 


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

2 carry out this section, there is authorized to be appro3 priated $5,000,000 for each of fiscal years 2013 through 

4 2017.’’. 

5 (b) TECHNICAL AMENDMENT.— 

6 (1) IN GENERAL.—Section 3 of the 

7 Hematological Cancer Research Investment and 

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

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

10 and inserting ‘‘section 417C’’. 

11 (2) EFFECTIVE DATE.—The amendment made 

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

13 section 3 of the Hematological Cancer Research In14 vestment and Education Act of 2002 (Public Law 

15 107–172; 116 Stat. 541). 

16 SEC. 4. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN17 CER SURVIVORS. 

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

19 U.S.C. 285a–11) is amended— 

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

21 AND AWARENESS’’ and inserting ‘‘RESEARCH, 

22 AWARENESS, AND SURVIVORSHIP’’; 

23 (2) in subsection (a)— 

24 (A) by redesignating paragraph (2) as 

25 paragraph (4); and 


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

2 following: 

3 ‘‘(2) RESEARCH ON CAUSES OF HEALTH DIS4 PARITIES IN PEDIATRIC CANCER SURVIVORSHIP.— 

5 ‘‘(A) GRANTS.—The Director of NIH, act6 ing through the Director of the Institute, in co7 ordination with ongoing research activities, 

8 shall make grants to entities to conduct re9 search relating to— 

10 ‘‘(i) needs and outcomes of pediatric 

11 cancer survivors within minority or other 

12 medically underserved populations; 

13 ‘‘(ii) health disparities in pediatric 

14 cancer survivorship outcomes within minor15 ity or other medically underserved popu16 lations; 

17 ‘‘(iii) barriers that pediatric cancer 

18 survivors within minority or other medi19 cally underserved populations face in re20 ceiving follow-up care; and 

21 ‘‘(iv) familial, socioeconomic, and 

22 other environmental factors and the impact 

23 of such factors on treatment outcomes and 

24 survivorship. 


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1 ‘‘(B) BALANCED APPROACH.—In making 

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

3 on pediatric cancer survivors within minority or 

4 other medically underserved populations, the 

5 Director of NIH shall ensure that such research 

6 addresses both the physical and the psycho7 logical needs of such survivors. 

8 ‘‘(3) RESEARCH ON LATE EFFECTS AND FOL9 LOW-UP CARE FOR PEDIATRIC CANCER SUR10 VIVORS.—The Director of NIH, in coordination with 

11 ongoing research activities, shall conduct or support 

12 research on follow-up care for pediatric cancer sur13 vivors, with special emphasis given to— 

14 ‘‘(A) the development of indicators used 

15 for long-term patient tracking and analysis of 

16 the late effects of cancer treatment for pediatric 

17 cancer survivors; 

18 ‘‘(B) the identification of risk factors asso19 ciated with the late effects of cancer treatment; 

20 ‘‘(C) the identification of predictors of 

21 neurocognitive and psychosocial outcomes; 

22 ‘‘(D) initiatives to protect cancer survivors 

23 from the late effects of cancer treatment; 

24 ‘‘(E) transitions in care for pediatric can25 cer survivors; 


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1 ‘‘(F) training of professionals to provide 

2 linguistically and culturally competent follow-up 

3 care to pediatric cancer survivors; and 

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

5 and 

6 (3) in subsection (d)— 

7 (A) by striking ‘‘this section and’’ and in8 serting ‘‘subsection (a)(1), subsection (b), and’’; 

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

10 ‘‘2017’’; and 

11 (C) by inserting after the second sentence 

12 the following: ‘‘For purposes of carrying out 

13 subsections (a)(2) and (a)(3), there is author14 ized to be appropriated $10,000,000 for each of 

15 fiscal years 2013 through 2017.’’. 

16 SEC. 5. COMPREHENSIVE LONG-TERM FOLLOW-UP SERV17 ICES FOR PEDIATRIC CANCER SURVIVORS. 

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

19 (42 U.S.C. 243 et seq.) is amended by inserting after sec20 tion 317T the following: 

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

22 FOLLOW-UP SERVICES FOR PEDIATRIC CAN23 CER SURVIVORS. 

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

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1 prehensive long-term follow-up services for pediatric can2 cer survivors. 

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

4 ‘eligible entity’ means— 

5 ‘‘(1) a school of medicine; 

6 ‘‘(2) a children’s hospital; 

7 ‘‘(3) a cancer center; or 

8 ‘‘(4) any other entity determined by the Sec9 retary to have significant experience and expertise 

10 in— 

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

12 young adult cancers; or 

13 ‘‘(B) integrating medical and psychosocial 

14 services for pediatric, adolescent, and young 

15 adult cancer survivors and their families. 

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

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

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

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

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

21 cancer survivors, which may include the costs of— 

22 ‘‘(1) providing medical and psychosocial follow23 up services, including coordination with the patient’s 

24 primary care provider and oncologist in order to en25 sure that the medical needs of survivors are adVerDate Mar 15 2010 03:21 Sep 27, 2011 Jkt 099200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H3015.IH H3015

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1 dressed, and providing linguistically and culturally 

2 competent information to survivors and families with 

3 appropriate outreach to medically underserved popu4 lations; 

5 ‘‘(2) the construction, expansion, and mod6 ernization of facilities; 

7 ‘‘(3) acquiring and leasing facilities and equip8 ment (including paying the costs of amortizing the 

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

10 such facilities and equipment) to support or further 

11 the operation of the grantee; and 

12 ‘‘(4) the construction and structural modifica13 tion (including equipment acquisition) of facilities to 

14 permit the integrated delivery of ongoing medical 

15 and psychosocial care to pediatric cancer survivors 

16 and their families at a single service site. 

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

18 carry out this section, there is authorized to be appro19 priated $10,000,000 for each of fiscal years 2013 through 

20 2017.’’. 

Æ 


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