I 

115TH CONGRESS 

1ST SESSION H. R. 820 

To maximize discovery, and accelerate development and availability, of 

promising childhood cancer treatments, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 2, 2017 

Mr. MCCAUL (for himself, Ms. SPEIER, Mr. BUTTERFIELD, and Mr. KELLY

of Pennsylvania) introduced the following bill; which was referred to the 

Committee on Energy and Commerce 

A BILL 

To maximize discovery, and accelerate development and availability, of promising childhood cancer treatments, 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; TABLE OF CONTENTS. 

4 (a) SHORT TITLE.—This Act may be cited as the 

5 ‘‘Childhood Cancer Survivorship, Treatment, Access, and 

6 Research Act of 2017’’ or the ‘‘Childhood Cancer STAR 

7 Act’’. 

8 (b) TABLE OF CONTENTS.—The table of contents for 

9 this Act is as follows: 


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Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—MAXIMIZING RESEARCH THROUGH DISCOVERY 

Subtitle A—Caroline Pryce Walker Conquer Childhood Cancer 

Reauthorization Act 

Sec. 101. Children’s cancer biorepositories and biospecimen research. 

Sec. 102. Improving Childhood Cancer Surveillance. 

Subtitle B—Pediatric Expertise at NIH 

Sec. 111. Inclusion of at least one pediatric oncologist on the National Cancer 

Advisory Board. 

Sec. 112. Sense of Congress regarding pediatric expertise at the National Cancer Institute. 

Subtitle C—NIH Report on Childhood Cancer Activities 

Sec. 121. Reporting on childhood cancer research projects. 

TITLE II—MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, 

SURVIVORSHIP, AND CAREGIVER SUPPORT 

Subtitle A—Childhood Cancer Survivors’ Quality of Life Act 

Sec. 201. Cancer survivorship programs. 

Sec. 202. Grants to improve care for pediatric cancer survivors. 

Sec. 203. Comprehensive long-term follow-up services for pediatric cancer survivors. 

Sec. 204. Survivorship demonstration project. 

Subtitle B—Coverage and Payment of High Quality Care 

Sec. 211. Report by the Comptroller General. 

1 SEC. 2. FINDINGS. 

2 Congress makes the following findings: 

3 (1) Each year in the United States there are an 

4 estimated 15,780 children between birth and the age 

5 of 19 diagnosed with cancer. Approximately 1 in 285 

6 children in the United States will be diagnosed with 

7 cancer before their 20th birthday. 

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

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


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1 rates have increased to over 80 percent for children 

2 and adolescents under age 20. 

3 (3) While the cure rates for some childhood 

4 cancers are now over 80 percent, the survival rates 

5 for many types of cancers in children remain ex6 tremely low. 

7 (4) According to the Centers for Disease Con8 trol and Prevention, cancer continues to be the lead9 ing cause of death by disease in children and adoles10 cents under the age of 14. 

11 (5) By 2020, the population of childhood can12 cers survivors is expected to be 500,000 individuals. 

13 (6) As many as two-thirds of childhood cancer 

14 survivors are likely to experience at least one late ef15 fect of treatment, with as many as one-fourth expe16 riencing a late effect that is serious or life-threat17 ening. Common late effects of childhood cancer are 

18 neurocognitive, psychological, cardiopulmonary, en19 docrine, and musculoskeletal effects, secondary ma20 lignancies, and early death. 

21 (7) As a result of disparities in the delivery of 

22 cancer care, minority, low-income, and other medi23 cally underserved children are more likely to be diag24 nosed with late stage disease, experience poorer 

25 treatment outcomes, have shorter survival time with 


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1 less quality of life, and experience a substantially 

2 greater likelihood of cancer death. 

3 (8) Collection of biospecimens, along with clin4 ical and outcome data, on children and adolescents 

5 with cancer in the United States is necessary to im6 prove childhood and adolescent cancer treatments 

7 and cures. Currently biospecimens, and clinical and 

8 outcome data, are collected for less than half of chil9 dren in the United States with cancer. 

10 (9) The late effects of cancer treatment may 

11 change as therapies evolve, which means that the 

12 monitoring and care of cancer survivors may need to 

13 be modified on a routine basis. 

14 (10) Despite the intense stress caused by child15 hood cancer, there is a lack of standardized and co16 ordinated psychosocial care for the children and 

17 their families, from the date of diagnosis through 

18 treatment and survivorship. 

19 (11) The National Academy of Medicine, in its 

20 report on cancer survivorship entitled ‘‘Childhood 

21 Cancer Survivorship: Improving Care and Quality of 

22 Life’’, states that an organized system of care and 

23 a method of care for pediatric cancer survivors is 

24 needed. 


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1 (12) Focused and well-designed research and 

2 pilot health delivery programs can answer questions 

3 about the optimal ways to provide health care, fol4 low-up monitoring services, and survivorship care to 

5 those diagnosed with childhood cancer and con6 tribute to improvements in the quality of care and 

7 quality of life of those individuals through adult8 hood. 

9 (13) The National Institutes of Health, includ10 ing the National Cancer Institute, invest approxi11 mately half of their annual appropriations to support 

12 basic research that serves as the foundation for 

13 translational and clinical research for all diseases 

14 and conditions, with the potential to lead to break15 throughs for children with cancer. Virtually all 

16 progress against cancer—in both children and 

17 adults—has been founded in basic research, often in 

18 areas not directly related to the disease. 

19 (14) The National Cancer Institute supports a 

20 number of key research programs specifically to ad21 vance childhood cancer care, including precision 

22 medicine clinical trials for children with cancer, the 

23 Children’s Oncology Group (part of the National 

24 Clinical Trials Network of the National Cancer In25 stitute), the Pediatric Preclinical Testing ConsorVerDate Sep 11 2014 23:26 Feb 08, 2017 Jkt 069200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H820.IH H820

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1 tium, the Pediatric Brain Tumor Consortium, the 

2 Childhood Cancer Survivor Study, the Therapeuti3 cally Applicable Research to Generate Effective 

4 Treatments program and related pediatric cancer 

5 genomics research (including the Pediatric MATCH 

6 Precision Medicine trial), and the Pediatric Oncology 

7 Branch (part of the intramural program of the Na8 tional Cancer Institute, whose mission is to develop 

9 new treatments for pediatric cancer). 

10 TITLE I—MAXIMIZING RE11 SEARCH THROUGH DIS12 COVERY 

13 Subtitle A—Caroline Pryce Walker 

14 Conquer Childhood Cancer Re15 authorization Act 

16 SEC. 101. CHILDREN’S CANCER BIOREPOSITORIES AND BIO17 SPECIMEN RESEARCH. 

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

19 U.S.C. 285a–11) is amended— 

20 (1) by striking subsection (a) and inserting the 

21 following: 

22 ‘‘(a) CHILDREN’S CANCER BIOREPOSITORIES.— 

23 ‘‘(1) AWARD.—The Secretary, acting through 

24 the Director of NIH, may make awards to an entity 

25 or entities described in paragraph (4) to build upon 


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1 existing initiatives to collect biospecimens and clin2 ical and demographic information with a goal of col3 lection for the vast majority of all children, adoles4 cents, and young adults with selected cancer 

5 subtypes (and their recurrences) for which current 

6 treatments are least effective, through one or more 

7 biospecimen research efforts designed to achieve a 

8 better understanding of the cause of such cancers 

9 (and their recurrences) and the effects of treatments 

10 for such cancers. 

11 ‘‘(2) USE OF FUNDS.—Amounts received under 

12 an award under paragraph (1) may be used to carry 

13 out the following: 

14 ‘‘(A) Acquire, preserve, and store high15 quality, donated biospecimens and associated 

16 clinical and demographic information on chil17 dren, adolescents, and young adults diagnosed 

18 with cancer in the United States, focusing on 

19 children and adolescents enrolled in clinical 

20 trials for whom current treatments are least ef21 fective. Activities under this subparagraph may 

22 include storage of biospecimens and associated 

23 clinical and demographic data at biorepositories 

24 supported by the National Cancer Institute, 

25 such as the Children’s Oncology Group BioVerDate Sep 11 2014 23:26 Feb 08, 2017 Jkt 069200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H820.IH H820

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1 repository and the Pediatric Cooperative 

2 Human Tissue Network as well as through bio3 repositories established as appropriate to sup4 port the scientific needs of future research ef5 forts. 

6 ‘‘(B) Make such information publicly avail7 able, including the repositories described in sub8 paragraph (A). 

9 ‘‘(C) Maintain a secure searchable data10 base on stored biospecimens and associated 

11 clinical and demographic data from children, 

12 adolescents, and young adults with cancer for 

13 the conduct of research by scientists and quali14 fied health care professionals. 

15 ‘‘(D) Establish procedures for evaluating 

16 applications for access to such biospecimens 

17 and clinical and demographic data from re18 searchers and other qualified health care pro19 fessionals. 

20 ‘‘(E) Make available and distribute bio21 specimens and clinical and demographic data 

22 from children, adolescents, and young adults 

23 with cancer to researchers and qualified health 

24 care professionals for peer-reviewed research at 

25 a minimal cost. 


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1 ‘‘(3) NO REQUIREMENT.—No child, adolescent, 

2 or young adult with cancer shall be required under 

3 this subsection to contribute a specimen to a bio4 repository or share clinical or demographic data. 

5 ‘‘(4) APPLICATION; CONSIDERATIONS.— 

6 ‘‘(A) APPLICATION.—To be eligible to re7 ceive an award under paragraph (1) an entity 

8 shall submit an application to the Secretary at 

9 such a time, in such manner, and containing 

10 such information as the Secretary may reason11 ably require. 

12 ‘‘(B) CONSIDERATIONS.—In evaluating the 

13 applications in subparagraph (A), the Secretary 

14 shall consider the existing infrastructure of the 

15 entity that would allow for the timely capture of 

16 biospecimens and related clinical and demo17 graphic information for children, adolescents, 

18 and young adults with cancer. 

19 ‘‘(5) PRIVACY PROTECTIONS; CONSENT.— 

20 ‘‘(A) IN GENERAL.—The Secretary may 

21 not make an award under paragraph (1) to an 

22 entity unless the Secretary ensures that such 

23 entity— 

24 ‘‘(i) collects biospecimens and associ25 ated clinical and demographic information 


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1 from children and adolescents with appro2 priate permission from parents or legal 

3 guardians in accordance with Federal and 

4 State law; and 

5 ‘‘(ii) adheres to strict confidentiality 

6 to protect the identity and privacy of pa7 tients in accordance with Federal and 

8 State law. 

9 ‘‘(B) CONSENT.—The Secretary shall es10 tablish an appropriate process for achieving 

11 consent from the patient, parent, or legal 

12 guardian. 

13 ‘‘(6) SINGLE POINT OF ACCESS; STANDARD

14 DATA; GUIDELINES AND OVERSIGHT.— 

15 ‘‘(A) SINGLE POINT OF ACCESS.—The Sec16 retary shall ensure that each biorepository sup17 ported under paragraph (1) has electronically 

18 searchable data for use by researchers and 

19 other qualified health care professionals in the 

20 manner and to the extent defined by the Sec21 retary. 

22 ‘‘(B) STANDARD DATA.—The Secretary 

23 shall require all recipients of an award under 

24 paragraph (1) to make available a standard 

25 dataset for the purposes of subparagraph (A) in 


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1 a standard electronic format that enables re2 searchers and qualified health care professionals 

3 to search. 

4 ‘‘(C) GUIDELINES AND OVERSIGHT.—The 

5 Secretary shall develop and disseminate appro6 priate guidelines for the development and main7 tenance of the biorepositories supported under 

8 this subsection, including appropriate oversight. 

9 ‘‘(7) COORDINATION.—The Secretary shall en10 sure that clinical and demographic information col11 lected in accordance with this subsection is collected 

12 in coordination with the information collected under 

13 section 399E–1. 

14 ‘‘(8) PROHIBITION ON USE OF FUNDS.—Funds 

15 made available to carry out this subsection shall not 

16 be used to acquire, preserve, or maintain a biospeci17 men collected from a patient if such activity is al18 ready covered by funds available from the National 

19 Cancer Institute for such purpose. 

20 ‘‘(9) REPORT.—Not later than 4 years after the 

21 date of enactment of the Childhood Cancer Survivor22 ship, Treatment, Access, and Research Act of 2017, 

23 the Secretary shall submit to Congress a report on— 

24 ‘‘(A) the number of biospecimens and cor25 responding clinical demographic data collected 


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1 through the biospecimen research efforts sup2 ported under paragraph (1); 

3 ‘‘(B) the number of biospecimens and cor4 responding clinical demographic data requested 

5 for use by researchers; 

6 ‘‘(C) any barriers to the collection of bio7 specimens and corresponding clinical demo8 graphic data; 

9 ‘‘(D) any barriers experienced by research10 ers or health care professionals in accessing the 

11 biospecimens and corresponding clinical demo12 graphic data necessary for use in research; and 

13 ‘‘(E) any recommendations with respect to 

14 improving the biospecimen and biorepository re15 search efforts under this subsection. 

16 ‘‘(10) DEFINITIONS.—For purposes of this sub17 section: 

18 ‘‘(A) AWARD.—The term ‘award’ includes 

19 a grant, contract, cooperative agreement, or 

20 other transaction determined by the Secretary. 

21 ‘‘(B) BIOSPECIMEN.—The term ‘biospeci22 men’ includes— 

23 ‘‘(i) solid tumor tissue or bone mar24 row; 

25 ‘‘(ii) normal or control tissue; 


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1 ‘‘(iii) blood and plasma; 

2 ‘‘(iv) DNA and RNA extractions; 

3 ‘‘(v) familial DNA; and 

4 ‘‘(vi) any other sample required by the 

5 Secretary. 

6 ‘‘(C) CLINICAL AND DEMOGRAPHIC INFOR7 MATION.—The term ‘clinical and demographic 

8 information’ includes— 

9 ‘‘(i) date of diagnosis; 

10 ‘‘(ii) age at diagnosis; 

11 ‘‘(iii) the patient’s gender, race, eth12 nicity, and environmental exposures; 

13 ‘‘(iv) extent of disease at enrollment; 

14 ‘‘(v) site of metastases; 

15 ‘‘(vi) location of primary tumor coded; 

16 ‘‘(vii) histologic diagnosis; 

17 ‘‘(viii) tumor marker data when avail18 able; 

19 ‘‘(ix) treatment and outcome data; 

20 ‘‘(x) information related to specimen 

21 quality; and 

22 ‘‘(xi) any other information required 

23 by the Secretary.’’; and 

24 (2) in subsection (d)— 


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1 (A) by striking ‘‘and section 399E–1’’ and 

2 inserting ‘‘and sections 317U, 399E–1, 417H, 

3 and 417H–1’’; 

4 (B) by striking ‘‘2009 through 2013’’ and 

5 inserting ‘‘2018 through 2022’’; and 

6 (C) by striking ‘‘such purpose’’ and insert7 ing ‘‘such purposes’’. 

8 SEC. 102. IMPROVING CHILDHOOD CANCER SURVEIL9 LANCE. 

10 Section 399E–1 of the Public Health Service Act (42 

11 U.S.C. 280e–3a) is amended— 

12 (1) by redesignating subsection (b) as sub13 section (d); and 

14 (2) by striking subsection (a) and inserting the 

15 following: 

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

17 the Director of the Centers for Disease Control and Pre18 vention, may make awards to State cancer registries to 

19 enhance and expand infrastructure to track the epidemi20 ology of cancer in children, adolescents, and young adults. 

21 Such registries may be updated to include each occurrence 

22 of such cancers within a period of time designated by the 

23 Secretary. 

24 ‘‘(b) ACTIVITIES.—The grants described in sub25 section (a) may be used for— 


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1 ‘‘(1) identifying, recruiting, and training all po2 tential sources for reporting childhood, adolescent, 

3 and young adult cancer cases; 

4 ‘‘(2) developing procedures to implement early 

5 inclusion of childhood, adolescent, and young adult 

6 cancer cases on State cancer registries through the 

7 use of electronic reporting; 

8 ‘‘(3) purchasing infrastructure to support the 

9 early inclusion of childhood, adolescent, and young 

10 adult cancer cases on such registries; 

11 ‘‘(4) submitting deidentified data to the Centers 

12 for Disease Control and Prevention for inclusion in 

13 a national database of childhood, adolescent, and 

14 young adult cancers; and 

15 ‘‘(5) tracking the late effects of childhood, ado16 lescent, and young adult cancers. 

17 ‘‘(c) COORDINATION.—The Secretary shall ensure 

18 that information collected through State cancer registries 

19 under this section is collected in coordination with clinical 

20 and demographic information collected under section 

21 417E(a), as appropriate.’’. 


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1 Subtitle B—Pediatric Expertise at 

2 NIH 

3 SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC 

4 ONCOLOGIST ON THE NATIONAL CANCER AD5 VISORY BOARD. 

6 Clause (iii) of section 406(h)(2)(A) of the Public 

7 Health Service Act (42 U.S.C. 284a(h)(2)(A)) is amended 

8 to read as follows: 

9 ‘‘(iii) of the members appointed to the Board— 

10 ‘‘(I) not less than 5 members shall be indi11 viduals knowledgeable in environmental carcino12 genesis (including carcinogenesis involving occu13 pational and dietary factors); and 

14 ‘‘(II) not less than one member shall be an 

15 individual knowledgeable in pediatric oncol16 ogy;’’. 

17 SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EX18 PERTISE AT THE NATIONAL CANCER INSTI19 TUTE. 

20 It is the sense of Congress that the Director of the 

21 National Cancer Institute should ensure that all applicable 

22 study sections, committees, advisory groups, and panels 

23 at the National Cancer Institute include one or more 

24 qualified pediatric oncologists, as appropriate. 


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1 Subtitle C—NIH Report on 

2 Childhood Cancer Activities 

3 SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH 

4 PROJECTS. 

5 Section 409D(c)(3) of the Public Health Service Act 

6 (42 U.S.C. 284h(c)(3)) is amended by— 

7 (1) striking ‘‘public on’’ and inserting ‘‘public 

8 on— 

9 ‘‘(A)’’; 

10 (2) striking the period at the end and inserting 

11 ‘‘; and’’; and 

12 (3) inserting at the end the following: 

13 ‘‘(B) childhood cancer research projects 

14 conducted or supported by the National Insti15 tutes of Health.’’. 

16 TITLE II—MAXIMIZING DELIV17 ERY: CARE, QUALITY OF LIFE, 

18 SURVIVORSHIP, AND CARE19 GIVER SUPPORT 

20 Subtitle A—Childhood Cancer 

21 Survivors’ Quality of Life Act 

22 SEC. 201. CANCER SURVIVORSHIP PROGRAMS. 

23 (a) CANCER SURVIVORSHIP PROGRAMS.—The Public 

24 Health Service Act is amended by inserting after section 

25 399N of such Act (42 U.S.C. 280g–2) the following: 


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1 ‘‘SEC. 399N–1. PILOT PROGRAMS TO EXPLORE MODEL SYS2 TEMS OF CARE FOR PEDIATRIC CANCER SUR3 VIVORS. 

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

5 date of enactment of the Childhood Cancer Survivorship, 

6 Treatment, Access, and Research Act of 2017, the Sec7 retary may make awards to eligible entities to establish 

8 pilot programs to develop, study, or evaluate model sys9 tems for monitoring and caring for childhood cancer sur10 vivors throughout their lifespan, including evaluation of 

11 shared care and medical home and clinic based models for 

12 transition to adult care. 

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; 

18 ‘‘(4) a community-based medical facility; or 

19 ‘‘(5) any other entity with significant experience 

20 and expertise in treating survivors of childhood can21 cers. 

22 ‘‘(c) USE OF FUNDS.—The Secretary may make an 

23 award under this section to an eligible entity only if the 

24 entity agrees— 

25 ‘‘(1) to use the award to establish a pilot pro26 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— 

5 ‘‘(A) design of protocols for different mod6 els of follow-up care, monitoring, and other sur7 vivorship programs (including peer support and 

8 mentoring programs); 

9 ‘‘(B) development of various models for 

10 providing multidisciplinary care; 

11 ‘‘(C) dissemination of information and the 

12 provision of training to health care providers 

13 about how to provide linguistically and cul14 turally competent follow-up care and monitoring 

15 to cancer survivors and their families; 

16 ‘‘(D) development of psychosocial interven17 tions and support programs to improve the 

18 quality of life of cancer survivors and their fam19 ilies; 

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

21 transfer of treatment information and care 

22 summaries from cancer care providers to other 

23 health care providers (including risk factors and 

24 a plan for recommended follow-up care); 


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1 ‘‘(F) dissemination of the information and 

2 programs described in subparagraphs (A) 

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

5 and to cancer survivors and their families, 

6 where appropriate; and 

7 ‘‘(G) development of initiatives that pro8 mote the coordination and effective transition of 

9 care between cancer care providers, primary 

10 care physicians, and mental health profes11 sionals. 

12 ‘‘SEC. 399N–2. 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 the Childhood 

17 Cancer Survivorship, Treatment, Access, and Research 

18 Act of 2017, convene a Workforce Development Collabo19 rative on Medical and Psychosocial Care for Pediatric 

20 Cancer Survivors (referred to in this section as the ‘Col21 laborative’). The Collaborative shall be a cross-specialty, 

22 multidisciplinary group composed of educators, consumer 

23 and family advocates, and providers of psychosocial and 

24 biomedical health 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 curricula rel8 evant to providing medical and psychosocial services 

9 to persons surviving 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 (b) TECHNICAL AMENDMENT.— 

2 (1) IN GENERAL.—Section 3 of the 

3 Hematological Cancer Research Investment and 

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

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

6 and inserting ‘‘section 417C’’. 

7 (2) EFFECTIVE DATE.—The amendment made 

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

9 section 3 of the Hematological Cancer Research In10 vestment and Education Act of 2002 (Public Law 

11 107–172; 116 Stat. 541). 

12 SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN13 CER SURVIVORS. 

14 (a) IN GENERAL.—Section 417E of the Public 

15 Health Service Act (42 U.S.C. 285a–11), as amended by 

16 section 101, is further amended— 

17 (1) in the section heading, by striking ‘‘RE18 SEARCH AND AWARENESS’’ and inserting ‘‘RE19 SEARCH, AWARENESS, AND SURVIVORSHIP’’; 

20 and 

21 (2) by striking subsection (b) and inserting the 

22 following: 

23 ‘‘(b) IMPROVING CARE FOR PEDIATRIC CANCER SUR24 VIVORS.— 


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

3 ‘‘(A) RESEARCH AWARDS.—The Director 

4 of NIH, in coordination with ongoing research 

5 activities, may conduct or support pediatric 

6 cancer survivorship research including in any of 

7 the following areas: 

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. 

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 con24 ducting or supporting research under subpara25 graph (A)(i) on pediatric cancer survivors withVerDate Sep 11 2014 23:26 Feb 08, 2017 Jkt 069200 PO 00000 Frm 00023 Fmt 6652 Sfmt 6201 E:\BILLS\H820.IH H820

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1 in minority or other medically underserved pop2 ulations, the Director of NIH shall ensure that 

3 such research addresses both the physical and 

4 the psychological needs of such survivors, as ap5 propriate. 

6 ‘‘(2) RESEARCH ON LATE EFFECTS AND FOL7 LOW-UP CARE FOR PEDIATRIC CANCER SUR8 VIVORS.—The Director of NIH, in coordination with 

9 ongoing research activities, may conduct or support 

10 research on follow-up care for pediatric cancer sur11 vivors, including in any of the following areas: 

12 ‘‘(A) The development of indicators used 

13 for long-term patient tracking and analysis of 

14 the late effects of cancer treatment for pediatric 

15 cancer survivors. 

16 ‘‘(B) The identification of risk factors as17 sociated with the late effects of cancer treat18 ment. 

19 ‘‘(C) The identification of predictors of ad20 verse neurocognitive and psychosocial outcomes. 

21 ‘‘(D) The identification of the molecular 

22 underpinnings of long-term complications. 

23 ‘‘(E) The development of risk prediction 

24 models to identify those at highest risk of long25 term complications. 


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1 ‘‘(F) Initiatives to protect cancer survivors 

2 from the late effects of cancer treatment, by de3 veloping targeted interventions to reduce the 

4 burden of morbidity borne by cancer survivors. 

5 ‘‘(G) Transitions in care for pediatric can6 cer survivors. 

7 ‘‘(H) Training of professionals to provide 

8 linguistically and culturally competent follow-up 

9 care to pediatric cancer survivors. 

10 ‘‘(I) Different models of follow-up care. 

11 ‘‘(J) Examining the cost-effectiveness of 

12 the different models of follow-up care.’’. 

13 SEC. 203. 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. STANDARDS FOR COMPREHENSIVE LONG-TERM 

19 CARE FOR PEDIATRIC CANCER SURVIVORS 

20 THROUGH THE LIFESPAN. 

21 ‘‘The Secretary may establish a task force to develop 

22 and test standards, outcomes, and metrics for high-quality 

23 childhood cancer survivorship care in consultation with a 

24 full spectrum of representation of experts in late effects 

25 of disease and treatment of childhood cancers, including— 


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1 ‘‘(1) oncologists who treat children and adoles2 cents; 

3 ‘‘(2) oncologists who treat adults; 

4 ‘‘(3) primary care providers engaged in survi5 vorship care; 

6 ‘‘(4) survivors of childhood cancer; 

7 ‘‘(5) parents of children who have been diag8 nosed with and treated for cancer and parents of 

9 long-term survivors; 

10 ‘‘(6) professionals who are engaged in the devel11 opment of clinical practice guidelines; 

12 ‘‘(7) nurses and social workers; 

13 ‘‘(8) mental health professionals; 

14 ‘‘(9) allied health professionals, including phys15 ical therapists and occupational therapists; 

16 ‘‘(10) experts in health care quality measure17 ment and improvement; and 

18 ‘‘(11) others, as the Secretary determines ap19 propriate.’’. 

20 SEC. 204. SURVIVORSHIP DEMONSTRATION PROJECT. 

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

22 date of the enactment of this Act, the Secretary of Health 

23 and Human Services (referred to in this section as the 

24 ‘‘Secretary’’) may carry out a demonstration project over 

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1 ciency of care provided to childhood cancer survivors 

2 throughout their lifespan, through improved care coordi3 nation as survivors transitions to adult care. 

4 (b) SELECTION OF DEMONSTRATION SITES.— 

5 (1) MAXIMUM NUMBER OF SITES.—The max6 imum number of sites at which the demonstration 

7 project under subsection (a) is carried out may not 

8 exceed 10. 

9 (2) DIVERSITY OF SITES.—In selecting entities 

10 to participate in the demonstration project, the Sec11 retary may, to the extent practicable, include in such 

12 selection— 

13 (A) small-, medium-, and large-sized sites; 

14 and 

15 (B) sites located in different geographic 

16 areas. 

17 (c) ACTIVITIES UNDER DEMONSTRATION

18 PROJECT.—The activities conducted under the demonstra19 tion project under subsection (a) may, in addition to any 

20 other activity specified by the Secretary, include activities 

21 that seek to develop different models of care coordination, 

22 including transitions of care, follow-up care, monitoring, 

23 and other survivorship related programs that utilize a 

24 multidisciplinary, team based approach to care, including 

25 any of the following activities: 


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1 (1) Coordination of care and transitions of care 

2 between cancer care providers, primary care physi3 cians, mental health professionals and any other rel4 evant providers. 

5 (2) Dissemination of information to, and train6 ing of, health care providers about linguistically and 

7 culturally competent follow-up care specific to cancer 

8 survivors. 

9 (3) Development of monitoring programs for 

10 cancer survivors and their families. 

11 (4) Incorporation of peer support and men12 toring programs to improve the quality of life of can13 cer survivors. 

14 (5) Designing systems and models for the effec15 tive transfer of treatment information and care sum16 maries from cancer care providers to other health 

17 care providers (including risk factors and a care 

18 plan). 

19 (6) Evaluation of functional status and incorpo20 ration of specific functional needs into the care plan21 ning process. 

22 (7) Dissemination of the information on activi23 ties and programs conducted under this section to 

24 other health care providers (including primary care 


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1 physicians) and to cancer survivors and their fami2 lies, where appropriate. 

3 (8) Other items determined by the Secretary. 

4 (d) MEASURES.—The Secretary may use the fol5 lowing measures to assess the performance of each site: 

6 (1) Patient care and patient/family satisfaction 

7 measures. 

8 (2) Resource utilization measures. 

9 (3) Adult survivorship measures, as appro10 priate. 

11 (e) GAO REPORT.—The Comptroller General of the 

12 United States shall submit a report to Congress evaluating 

13 the success of the demonstration project. Such report shall 

14 include an assessment of the impact of the project upon 

15 the quality and cost-efficiency of services furnished to indi16 viduals under this title, including an assessment of the sat17 isfaction of such individuals with respect to such services 

18 that were furnished under such project. Such report shall 

19 include recommendations regarding the possible expansion 

20 of the demonstration project. 

21 Subtitle B—Coverage and Payment 

22 of High Quality Care 

23 SEC. 211. REPORT BY THE COMPTROLLER GENERAL. 

24 (a) IN GENERAL.—The Comptroller General of the 

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1 ommendations to Congress on existing barriers to obtain2 ing and paying for adequate medical care for survivors of 

3 childhood cancer. 

4 (b) CONSIDERATIONS.—In carrying out the review 

5 and formulating recommendations under subsection (a), 

6 the Comptroller General shall— 

7 (1) identify existing barriers to the availability 

8 of complete and coordinated survivorship care for 

9 survivors of childhood cancer and to the availability 

10 of expert pediatric palliative care, including consider11 ation of— 

12 (A) understanding and education among 

13 patients, health care providers, regulators, and 

14 third-party payors; 

15 (B) adequacy of payment codes to cover 

16 necessary survivorship services; 

17 (C) access to necessary medical and other 

18 services for such survivors, including the serv19 ices described in subsection (c); and 

20 (D) lack of pediatric palliative care across 

21 all stages of illness and hospice services for pa22 tients approaching the end of life; and 

23 (2) make recommendations to provide improved 

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1 vivorship programs and palliative care, including 

2 psychosocial services and coverage of such services. 

3 (c) SERVICES DESCRIBED.—The services described in 

4 this subsection are the following: 

5 (1) Coordinated multidisciplinary long-term fol6 low-up care with access to appropriate pediatric sub7 specialists and adult subspecialists with specific ex8 pertise in survivorship, including subspecialists with 

9 expertise in oncology, radiation oncology, surgery, 

10 cardiology, psychiatry or psychology, endocrinology, 

11 pulmonology, nephrology, dermatology, gynecology, 

12 and urology. 

13 (2) Appropriate organ function testing (particu14 larly screening for potential problems at much 

15 younger ages than usually indicated in the general 

16 population) and treatment, including— 

17 (A) neuropsychological testing and mental 

18 health services; 

19 (B) fertility testing and treatment; 

20 (C) evaluation and treatment for endocrine 

21 disorders including growth hormone and testos22 terone replacement; 

23 (D) diagnostic imaging to screen for late 

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1 nance imaging testing to screen for possible 

2 breast cancer; 

3 (E) screening for cardiac problems, such 

4 as echocardiograms; 

5 (F) screening for osteoporosis with bone 

6 densitometry, including duel x-ray absorptiome7 try and monitoring 25-hydroxyvitamin D levels; 

8 (G) dental coverage and necessary dental 

9 implants; 

10 (H) hearing aids and other prosthetic de11 vices; and 

12 (I) screening for lung problems, such as 

13 pulmonary function testing. 

Æ 


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