II 

Calendar No. 342 

115TH CONGRESS 

2D SESSION S. 292 

To maximize discovery, and accelerate development and availability, of 

promising childhood cancer treatments, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 2, 2017 

Mr. REED (for himself, Mrs. CAPITO, Mr. VAN HOLLEN, Mr. ISAKSON, Mr. 

BLUNT, Mrs. SHAHEEN, Mr. RUBIO, Mrs. GILLIBRAND, Mr. BOOKER, 

Ms. COLLINS, Mr. KING, Mr. COONS, Mr. PERDUE, Mr. GRASSLEY, Ms. 

STABENOW, Mr. KENNEDY, Mr. WHITEHOUSE, Mr. CASSIDY, Mr. 

BLUMENTHAL, Mr. YOUNG, Mr. CASEY, Mr. MANCHIN, Mrs. ERNST, Mr. 

NELSON, Mr. PORTMAN, Mrs. FISCHER, Mr. FRANKEN, Mr. BROWN, Mr. 

HATCH, Mr. PETERS, Ms. MURKOWSKI, Ms. DUCKWORTH, Mr. MARKEY, 

Mr. HELLER, Ms. KLOBUCHAR, Mr. WICKER, Mr. MERKLEY, Mr. DONNELLY, Mrs. FEINSTEIN, Mr. SCHUMER, Mr. BENNET, Mr. LEAHY, Mr. 

KAINE, Ms. SMITH, Mr. TILLIS, Ms. CORTEZ MASTO, Mr. SANDERS, Mr. 

CARDIN, and Ms. BALDWIN) introduced the following bill; which was read 

twice and referred to the Committee on Health, Education, Labor, and 

Pensions 

MARCH 12, 2018 

Reported by Mr. ALEXANDER, with an amendment 

[Strike out all after the enacting clause and insert the part printed in italic] 

A BILL 

To maximize discovery, and accelerate development and availability, of promising childhood cancer treatments, and 

for other purposes. 


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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: 

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. 


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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 

10 rates have increased to over 80 percent for children 

11 and adolescents under age 20. 

12 (3) While the cure rates for some childhood 

13 cancers are now over 80 percent, the survival rates 

14 for many types of cancers in children remain ex15 tremely low. 

16 (4) According to the Centers for Disease Con17 trol and Prevention, cancer continues to be the lead18 ing cause of death by disease in children and adoles19 cents under the age of 14. 

20 (5) By 2020, the population of childhood can21 cers survivors is expected to be 500,000 individuals. 

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

23 survivors are likely to experience at least one late ef24 fect of treatment, with as many as one-fourth expe25 riencing a late effect that is serious or life-threat26 ening. Common late effects of childhood cancer are 


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1 neurocognitive, psychological, cardiopulmonary, en2 docrine, and musculoskeletal effects, secondary ma3 lignancies, and early death. 

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

5 cancer care, minority, low-income, and other medi6 cally underserved children are more likely to be diag7 nosed with late stage disease, experience poorer 

8 treatment outcomes, have shorter survival time with 

9 less quality of life, and experience a substantially 

10 greater likelihood of cancer death. 

11 (8) Collection of biospecimens, along with clin12 ical and outcome data, on children and adolescents 

13 with cancer in the United States is necessary to im14 prove childhood and adolescent cancer treatments 

15 and cures. Currently biospecimens, and clinical and 

16 outcome data, are collected for less than half of chil17 dren in the United States with cancer. 

18 (9) The late effects of cancer treatment may 

19 change as therapies evolve, which means that the 

20 monitoring and care of cancer survivors may need to 

21 be modified on a routine basis. 

22 (10) Despite the intense stress caused by child23 hood cancer, there is a lack of standardized and co24 ordinated psychosocial care for the children and 


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1 their families, from the date of diagnosis through 

2 treatment and survivorship. 

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

4 report on cancer survivorship entitled ‘‘Childhood 

5 Cancer Survivorship: Improving Care and Quality of 

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

7 a method of care for pediatric cancer survivors is 

8 needed. 

9 (12) Focused and well-designed research and 

10 pilot health delivery programs can answer questions 

11 about the optimal ways to provide health care, fol12 low-up monitoring services, and survivorship care to 

13 those diagnosed with childhood cancer and con14 tribute to improvements in the quality of care and 

15 quality of life of those individuals through adult16 hood. 

17 (13) The National Institutes of Health, includ18 ing the National Cancer Institute, invest approxi19 mately half of their annual appropriations to support 

20 basic research that serves as the foundation for 

21 translational and clinical research for all diseases 

22 and conditions, with the potential to lead to break23 throughs for children with cancer. Virtually all 

24 progress against cancer—in both children and 


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

2 areas not directly related to the disease. 

3 (14) The National Cancer Institute supports a 

4 number of key research programs specifically to ad5 vance childhood cancer care, including precision 

6 medicine clinical trials for children with cancer, the 

7 Children’s Oncology Group (part of the National 

8 Clinical Trials Network of the National Cancer In9 stitute), the Pediatric Preclinical Testing Consor10 tium, the Pediatric Brain Tumor Consortium, the 

11 Childhood Cancer Survivor Study, the Therapeuti12 cally Applicable Research to Generate Effective 

13 Treatments program and related pediatric cancer 

14 genomics research (including the Pediatric MATCH 

15 Precision Medicine trial), and the Pediatric Oncology 

16 Branch (part of the intramural program of the Na17 tional Cancer Institute, whose mission is to develop 

18 new treatments for pediatric cancer). 


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1 TITLE I—MAXIMIZING RE2 SEARCH THROUGH DIS3 COVERY 

4 Subtitle A—Caroline Pryce Walker 

5 Conquer Childhood Cancer Re6 authorization Act 

7 SEC. 101. CHILDREN’S CANCER BIOREPOSITORIES AND BIO8 SPECIMEN RESEARCH. 

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

10 U.S.C. 285a–11) is amended— 

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

12 following: 

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

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

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

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

17 existing initiatives to collect biospecimens and clin18 ical and demographic information with a goal of col19 lection for the vast majority of all children, adoles20 cents, and young adults with selected cancer 

21 subtypes (and their recurrences) for which current 

22 treatments are least effective, through one or more 

23 biospecimen research efforts designed to achieve a 

24 better understanding of the cause of such cancers 


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1 (and their recurrences) and the effects of treatments 

2 for such cancers. 

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

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

5 out the following: 

6 ‘‘(A) Acquire, preserve, and store high7 quality, donated biospecimens and associated 

8 clinical and demographic information on chil9 dren, adolescents, and young adults diagnosed 

10 with cancer in the United States, focusing on 

11 children and adolescents enrolled in clinical 

12 trials for whom current treatments are least ef13 fective. Activities under this subparagraph may 

14 include storage of biospecimens and associated 

15 clinical and demographic data at biorepositories 

16 supported by the National Cancer Institute, 

17 such as the Children’s Oncology Group Bio18 repository and the Pediatric Cooperative 

19 Human Tissue Network as well as through bio20 repositories established as appropriate to sup21 port the scientific needs of future research ef22 forts. 

23 ‘‘(B) Make such information publicly avail24 able, including the repositories described in sub25 paragraph (A). 


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1 ‘‘(C) Maintain a secure searchable data2 base on stored biospecimens and associated 

3 clinical and demographic data from children, 

4 adolescents, and young adults with cancer for 

5 the conduct of research by scientists and quali6 fied health care professionals. 

7 ‘‘(D) Establish procedures for evaluating 

8 applications for access to such biospecimens 

9 and clinical and demographic data from re10 searchers and other qualified health care pro11 fessionals. 

12 ‘‘(E) Make available and distribute bio13 specimens and clinical and demographic data 

14 from children, adolescents, and young adults 

15 with cancer to researchers and qualified health 

16 care professionals for peer-reviewed research at 

17 a minimal cost. 

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

19 or young adult with cancer shall be required under 

20 this subsection to contribute a specimen to a bio21 repository or share clinical or demographic data. 

22 ‘‘(4) APPLICATION; CONSIDERATIONS.— 

23 ‘‘(A) APPLICATION.—To be eligible to re24 ceive an award under paragraph (1) an entity 

25 shall submit an application to the Secretary at 


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1 such a time, in such manner, and containing 

2 such information as the Secretary may reason3 ably require. 

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

5 applications in subparagraph (A), the Secretary 

6 shall consider the existing infrastructure of the 

7 entity that would allow for the timely capture of 

8 biospecimens and related clinical and demo9 graphic information for children, adolescents, 

10 and young adults with cancer. 

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

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

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

14 entity unless the Secretary ensures that such 

15 entity— 

16 ‘‘(i) collects biospecimens and associ17 ated clinical and demographic information 

18 from children and adolescents with appro19 priate permission from parents or legal 

20 guardians in accordance with Federal and 

21 State law; and 

22 ‘‘(ii) adheres to strict confidentiality 

23 to protect the identity and privacy of pa24 tients in accordance with Federal and 

25 State law. 


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1 ‘‘(B) CONSENT.—The Secretary shall es2 tablish an appropriate process for achieving 

3 consent from the patient, parent, or legal 

4 guardian. 

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

6 DATA; GUIDELINES AND OVERSIGHT.— 

7 ‘‘(A) SINGLE POINT OF ACCESS.—The Sec8 retary shall ensure that each biorepository sup9 ported under paragraph (1) has electronically 

10 searchable data for use by researchers and 

11 other qualified health care professionals in the 

12 manner and to the extent defined by the Sec13 retary. 

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

15 shall require all recipients of an award under 

16 paragraph (1) to make available a standard 

17 dataset for the purposes of subparagraph (A) in 

18 a standard electronic format that enables re19 searchers and qualified health care professionals 

20 to search. 

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

22 Secretary shall develop and disseminate appro23 priate guidelines for the development and main24 tenance of the biorepositories supported under 

25 this subsection, including appropriate oversight. 


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1 ‘‘(7) COORDINATION.—The Secretary shall en2 sure that clinical and demographic information col3 lected in accordance with this subsection is collected 

4 in coordination with the information collected under 

5 section 399E–1. 

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

7 made available to carry out this subsection shall not 

8 be used to acquire, preserve, or maintain a biospeci9 men collected from a patient if such activity is al10 ready covered by funds available from the National 

11 Cancer Institute for such purpose. 

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

13 date of enactment of the Childhood Cancer Survivor14 ship, Treatment, Access, and Research Act of 2017, 

15 the Secretary shall submit to Congress a report on— 

16 ‘‘(A) the number of biospecimens and cor17 responding clinical demographic data collected 

18 through the biospecimen research efforts sup19 ported under paragraph (1); 

20 ‘‘(B) the number of biospecimens and cor21 responding clinical demographic data requested 

22 for use by researchers; 

23 ‘‘(C) any barriers to the collection of bio24 specimens and corresponding clinical demo25 graphic data; 


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1 ‘‘(D) any barriers experienced by research2 ers or health care professionals in accessing the 

3 biospecimens and corresponding clinical demo4 graphic data necessary for use in research; and 

5 ‘‘(E) any recommendations with respect to 

6 improving the biospecimen and biorepository re7 search efforts under this subsection. 

8 ‘‘(10) DEFINITIONS.—For purposes of this sub9 section: 

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

11 a grant, contract, cooperative agreement, or 

12 other transaction determined by the Secretary. 

13 ‘‘(B) BIOSPECIMEN.—The term ‘biospeci14 men’ includes— 

15 ‘‘(i) solid tumor tissue or bone mar16 row; 

17 ‘‘(ii) normal or control tissue; 

18 ‘‘(iii) blood and plasma; 

19 ‘‘(iv) DNA and RNA extractions; 

20 ‘‘(v) familial DNA; and 

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

22 Secretary. 

23 ‘‘(C) CLINICAL AND DEMOGRAPHIC INFOR24 MATION.—The term ‘clinical and demographic 

25 information’ includes— 


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1 ‘‘(i) date of diagnosis; 

2 ‘‘(ii) age at diagnosis; 

3 ‘‘(iii) the patient’s gender, race, eth4 nicity, and environmental exposures; 

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

6 ‘‘(v) site of metastases; 

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

8 ‘‘(vii) histologic diagnosis; 

9 ‘‘(viii) tumor marker data when avail10 able; 

11 ‘‘(ix) treatment and outcome data; 

12 ‘‘(x) information related to specimen 

13 quality; and 

14 ‘‘(xi) any other information required 

15 by the Secretary.’’; and 

16 (2) in subsection (d)— 

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

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

19 and 417H–1’’; 

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

21 inserting ‘‘2018 through 2022’’; and 

22 (C) by striking ‘‘such purpose’’ and insert23 ing ‘‘such purposes’’. 


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1 SEC. 102. IMPROVING CHILDHOOD CANCER SURVEIL2 LANCE. 

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

4 U.S.C. 280e–3a) is amended— 

5 (1) by redesignating subsection (b) as sub6 section (d); and 

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

8 following: 

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

10 the Director of the Centers for Disease Control and Pre11 vention, may make awards to State cancer registries to 

12 enhance and expand infrastructure to track the epidemi13 ology of cancer in children, adolescents, and young adults. 

14 Such registries may be updated to include each occurrence 

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

16 Secretary. 

17 ‘‘(b) ACTIVITIES.—The grants described in sub18 section (a) may be used for— 

19 ‘‘(1) identifying, recruiting, and training all po20 tential sources for reporting childhood, adolescent, 

21 and young adult cancer cases; 

22 ‘‘(2) developing procedures to implement early 

23 inclusion of childhood, adolescent, and young adult 

24 cancer cases on State cancer registries through the 

25 use of electronic reporting; 


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1 ‘‘(3) purchasing infrastructure to support the 

2 early inclusion of childhood, adolescent, and young 

3 adult cancer cases on such registries; 

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

5 for Disease Control and Prevention for inclusion in 

6 a national database of childhood, adolescent, and 

7 young adult cancers; and 

8 ‘‘(5) tracking the late effects of childhood, ado9 lescent, and young adult cancers. 

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

11 that information collected through State cancer registries 

12 under this section is collected in coordination with clinical 

13 and demographic information collected under section 

14 417E(a), as appropriate.’’. 

15 Subtitle B—Pediatric Expertise at 

16 NIH 

17 SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC 

18 ONCOLOGIST ON THE NATIONAL CANCER AD19 VISORY BOARD. 

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

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

22 to read as follows: 

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

24 ‘‘(I) not less than 5 members shall be indi25 viduals knowledgeable in environmental carcinoVerDate Sep 11 2014 21:39 Mar 12, 2018 Jkt 079200 PO 00000 Frm 00016 Fmt 6652 Sfmt 6401 E:\BILLS\S292.RS S292

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1 genesis (including carcinogenesis involving occu2 pational and dietary factors); and 

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

4 individual knowledgeable in pediatric oncol5 ogy;’’. 

6 SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EX7 PERTISE AT THE NATIONAL CANCER INSTI8 TUTE. 

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

10 National Cancer Institute should ensure that all applicable 

11 study sections, committees, advisory groups, and panels 

12 at the National Cancer Institute include one or more 

13 qualified pediatric oncologists, as appropriate. 

14 Subtitle C—NIH Report on 

15 Childhood Cancer Activities 

16 SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH 

17 PROJECTS. 

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

19 (42 U.S.C. 284h(c)(3)) is amended by— 

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

21 on— 

22 ‘‘(A)’’; 

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

24 ‘‘; and’’; and 

25 (3) inserting at the end the following: 


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1 ‘‘(B) childhood cancer research projects 

2 conducted or supported by the National Insti3 tutes of Health.’’. 

4 TITLE II—MAXIMIZING DELIV5 ERY: CARE, QUALITY OF LIFE, 

6 SURVIVORSHIP, AND CARE7 GIVER SUPPORT 

8 Subtitle A—Childhood Cancer 

9 Survivors’ Quality of Life Act 

10 SEC. 201. CANCER SURVIVORSHIP PROGRAMS. 

11 (a) CANCER SURVIVORSHIP PROGRAMS.—The Public 

12 Health Service Act is amended by inserting after section 

13 399N of such Act (42 U.S.C. 280g–2) the following: 

14 ‘‘SEC. 399N–1. PILOT PROGRAMS TO EXPLORE MODEL SYS15 TEMS OF CARE FOR PEDIATRIC CANCER SUR16 VIVORS. 

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

18 date of enactment of the Childhood Cancer Survivorship, 

19 Treatment, Access, and Research Act of 2017, the Sec20 retary may make awards to eligible entities to establish 

21 pilot programs to develop, study, or evaluate model sys22 tems for monitoring and caring for childhood cancer sur23 vivors throughout their lifespan, including evaluation of 

24 shared care and medical home and clinic based models for 

25 transition to adult care. 


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

2 ‘eligible entity’ means— 

3 ‘‘(1) a medical school; 

4 ‘‘(2) a children’s hospital; 

5 ‘‘(3) a cancer center; 

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

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

8 and expertise in treating survivors of childhood can9 cers. 

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

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

12 entity agrees— 

13 ‘‘(1) to use the award to establish a pilot pro14 gram to develop, study, or evaluate one or more 

15 model systems for monitoring and caring for cancer 

16 survivors; and 

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

18 such systems, to give special emphasis to— 

19 ‘‘(A) design of protocols for different mod20 els of follow-up care, monitoring, and other sur21 vivorship programs (including peer support and 

22 mentoring programs); 

23 ‘‘(B) development of various models for 

24 providing multidisciplinary care; 


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1 ‘‘(C) dissemination of information and the 

2 provision of training to health care providers 

3 about how to provide linguistically and cul4 turally competent follow-up care and monitoring 

5 to cancer survivors and their families; 

6 ‘‘(D) development of psychosocial interven7 tions and support programs to improve the 

8 quality of life of cancer survivors and their fam9 ilies; 

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

11 transfer of treatment information and care 

12 summaries from cancer care providers to other 

13 health care providers (including risk factors and 

14 a plan for recommended follow-up care); 

15 ‘‘(F) dissemination of the information and 

16 programs described in subparagraphs (A) 

17 through (E) to other health care providers (in18 cluding primary care physicians and internists) 

19 and to cancer survivors and their families, 

20 where appropriate; and 

21 ‘‘(G) development of initiatives that pro22 mote the coordination and effective transition of 

23 care between cancer care providers, primary 

24 care physicians, and mental health profes25 sionals. 


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1 ‘‘SEC. 399N–2. WORKFORCE DEVELOPMENT COLLABO2 RATIVE ON MEDICAL AND PSYCHOSOCIAL 

3 CARE FOR CHILDHOOD CANCER SURVIVORS. 

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

5 than 1 year after the date of enactment of the Childhood 

6 Cancer Survivorship, Treatment, Access, and Research 

7 Act of 2017, convene a Workforce Development Collabo8 rative on Medical and Psychosocial Care for Pediatric 

9 Cancer Survivors (referred to in this section as the ‘Col10 laborative’). The Collaborative shall be a cross-specialty, 

11 multidisciplinary group composed of educators, consumer 

12 and family advocates, and providers of psychosocial and 

13 biomedical health services. 

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

15 submit to the Secretary a report establishing a plan to 

16 meet the following objectives for medical and psychosocial 

17 care workforce development: 

18 ‘‘(1) Identifying, refining, and broadly dissemi19 nating to health care educators information about 

20 workforce competencies, models, and curricula rel21 evant to providing medical and psychosocial services 

22 to persons surviving pediatric cancers. 

23 ‘‘(2) Adapting curricula for continuing edu24 cation of the existing workforce using efficient work25 place-based learning approaches. 


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

2 trainers in teaching psychosocial health care using 

3 evidence-based teaching strategies. 

4 ‘‘(4) Strengthening the emphasis on psycho5 social health care in educational accreditation stand6 ards and professional licensing and certification 

7 exams by recommending revisions to the relevant 

8 oversight organizations. 

9 ‘‘(5) Evaluating the effectiveness of patient 

10 navigators in pediatric cancer survivorship care. 

11 ‘‘(6) Evaluating the effectiveness of peer sup12 port programs in the psychosocial care of pediatric 

13 cancer patients and survivors.’’. 

14 (b) TECHNICAL AMENDMENT.— 

15 (1) IN GENERAL.—Section 3 of the 

16 Hematological Cancer Research Investment and 

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

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

19 and inserting ‘‘section 417C’’. 

20 (2) EFFECTIVE DATE.—The amendment made 

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

22 section 3 of the Hematological Cancer Research In23 vestment and Education Act of 2002 (Public Law 

24 107–172; 116 Stat. 541). 


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1 SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN2 CER SURVIVORS. 

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

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

5 section 101, is further amended— 

6 (1) in the section heading, by striking ‘‘RE7 SEARCH AND AWARENESS’’ and inserting ‘‘RE8 SEARCH, AWARENESS, AND SURVIVORSHIP’’; 

9 and 

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

11 following: 

12 ‘‘(b) IMPROVING CARE FOR PEDIATRIC CANCER SUR13 VIVORS.— 

14 ‘‘(1) RESEARCH ON CAUSES OF HEALTH DIS15 PARITIES IN PEDIATRIC CANCER SURVIVORSHIP.— 

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

17 of NIH, in coordination with ongoing research 

18 activities, may conduct or support pediatric 

19 cancer survivorship research including in any of 

20 the following areas: 

21 ‘‘(i) Needs and outcomes of pediatric 

22 cancer survivors within minority or other 

23 medically underserved populations. 

24 ‘‘(ii) Health disparities in pediatric 

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1 ity or other medically underserved popu2 lations. 

3 ‘‘(iii) Barriers that pediatric cancer 

4 survivors within minority or other medi5 cally underserved populations face in re6 ceiving follow-up care. 

7 ‘‘(iv) Familial, socioeconomic, and 

8 other environmental factors and the impact 

9 of such factors on treatment outcomes and 

10 survivorship. 

11 ‘‘(B) BALANCED APPROACH.—In con12 ducting or supporting research under subpara13 graph (A)(i) on pediatric cancer survivors with14 in minority or other medically underserved pop15 ulations, the Director of NIH shall ensure that 

16 such research addresses both the physical and 

17 the psychological needs of such survivors, as ap18 propriate. 

19 ‘‘(2) RESEARCH ON LATE EFFECTS AND FOL20 LOW-UP CARE FOR PEDIATRIC CANCER SUR21 VIVORS.—The Director of NIH, in coordination with 

22 ongoing research activities, may conduct or support 

23 research on follow-up care for pediatric cancer sur24 vivors, including in any of the following areas: 


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1 ‘‘(A) The development of indicators used 

2 for long-term patient tracking and analysis of 

3 the late effects of cancer treatment for pediatric 

4 cancer survivors. 

5 ‘‘(B) The identification of risk factors as6 sociated with the late effects of cancer treat7 ment. 

8 ‘‘(C) The identification of predictors of ad9 verse neurocognitive and psychosocial outcomes. 

10 ‘‘(D) The identification of the molecular 

11 underpinnings of long-term complications. 

12 ‘‘(E) The development of risk prediction 

13 models to identify those at highest risk of long14 term complications. 

15 ‘‘(F) Initiatives to protect cancer survivors 

16 from the late effects of cancer treatment, by de17 veloping targeted interventions to reduce the 

18 burden of morbidity borne by cancer survivors. 

19 ‘‘(G) Transitions in care for pediatric can20 cer survivors. 

21 ‘‘(H) Training of professionals to provide 

22 linguistically and culturally competent follow-up 

23 care to pediatric cancer survivors. 

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


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

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

3 SEC. 203. COMPREHENSIVE LONG-TERM FOLLOW-UP SERV4 ICES FOR PEDIATRIC CANCER SURVIVORS. 

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

6 (42 U.S.C. 243 et seq.) is amended by inserting after sec7 tion 317T the following: 

8 ‘‘SEC. 317U. STANDARDS FOR COMPREHENSIVE LONG-TERM 

9 CARE FOR PEDIATRIC CANCER SURVIVORS 

10 THROUGH THE LIFESPAN. 

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

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

13 childhood cancer survivorship care in consultation with a 

14 full spectrum of representation of experts in late effects 

15 of disease and treatment of childhood cancers, including— 

16 ‘‘(1) oncologists who treat children and adoles17 cents; 

18 ‘‘(2) oncologists who treat adults; 

19 ‘‘(3) primary care providers engaged in survi20 vorship care; 

21 ‘‘(4) survivors of childhood cancer; 

22 ‘‘(5) parents of children who have been diag23 nosed with and treated for cancer and parents of 

24 long-term survivors; 


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1 ‘‘(6) professionals who are engaged in the devel2 opment of clinical practice guidelines; 

3 ‘‘(7) nurses and social workers; 

4 ‘‘(8) mental health professionals; 

5 ‘‘(9) allied health professionals, including phys6 ical therapists and occupational therapists; 

7 ‘‘(10) experts in health care quality measure8 ment and improvement; and 

9 ‘‘(11) others, as the Secretary determines ap10 propriate.’’. 

11 SEC. 204. SURVIVORSHIP DEMONSTRATION PROJECT. 

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

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

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

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

16 a 3-year period, designed to improve the quality and effi17 ciency of care provided to childhood cancer survivors 

18 throughout their lifespan, through improved care coordi19 nation as survivors transitions to adult care. 

20 (b) SELECTION OF DEMONSTRATION SITES.— 

21 (1) MAXIMUM NUMBER OF SITES.—The max22 imum number of sites at which the demonstration 

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

24 exceed 10. 


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

2 to participate in the demonstration project, the Sec3 retary may, to the extent practicable, include in such 

4 selection— 

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

6 and 

7 (B) sites located in different geographic 

8 areas. 

9 (c) ACTIVITIES UNDER DEMONSTRATION

10 PROJECT.—The activities conducted under the demonstra11 tion project under subsection (a) may, in addition to any 

12 other activity specified by the Secretary, include activities 

13 that seek to develop different models of care coordination, 

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

15 and other survivorship related programs that utilize a 

16 multidisciplinary, team based approach to care, including 

17 any of the following activities: 

18 (1) Coordination of care and transitions of care 

19 between cancer care providers, primary care physi20 cians, mental health professionals and any other rel21 evant providers. 

22 (2) Dissemination of information to, and train23 ing of, health care providers about linguistically and 

24 culturally competent follow-up care specific to cancer 

25 survivors. 


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1 (3) Development of monitoring programs for 

2 cancer survivors and their families. 

3 (4) Incorporation of peer support and men4 toring programs to improve the quality of life of can5 cer survivors. 

6 (5) Designing systems and models for the effec7 tive transfer of treatment information and care sum8 maries from cancer care providers to other health 

9 care providers (including risk factors and a care 

10 plan). 

11 (6) Evaluation of functional status and incorpo12 ration of specific functional needs into the care plan13 ning process. 

14 (7) Dissemination of the information on activi15 ties and programs conducted under this section to 

16 other health care providers (including primary care 

17 physicians) and to cancer survivors and their fami18 lies, where appropriate. 

19 (8) Other items determined by the Secretary. 

20 (d) MEASURES.—The Secretary may use the fol21 lowing measures to assess the performance of each site: 

22 (1) Patient care and patient/family satisfaction 

23 measures. 

24 (2) Resource utilization measures. 


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1 (3) Adult survivorship measures, as appro2 priate. 

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

4 United States shall submit a report to Congress evaluating 

5 the success of the demonstration project. Such report shall 

6 include an assessment of the impact of the project upon 

7 the quality and cost-efficiency of services furnished to indi8 viduals under this title, including an assessment of the sat9 isfaction of such individuals with respect to such services 

10 that were furnished under such project. Such report shall 

11 include recommendations regarding the possible expansion 

12 of the demonstration project. 

13 Subtitle B—Coverage and Payment 

14 of High Quality Care 

15 SEC. 211. REPORT BY THE COMPTROLLER GENERAL. 

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

17 United States shall conduct a review and submit rec18 ommendations to Congress on existing barriers to obtain19 ing and paying for adequate medical care for survivors of 

20 childhood cancer. 

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

22 and formulating recommendations under subsection (a), 

23 the Comptroller General shall— 

24 (1) identify existing barriers to the availability 

25 of complete and coordinated survivorship care for 


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1 survivors of childhood cancer and to the availability 

2 of expert pediatric palliative care, including consider3 ation of— 

4 (A) understanding and education among 

5 patients, health care providers, regulators, and 

6 third-party payors; 

7 (B) adequacy of payment codes to cover 

8 necessary survivorship services; 

9 (C) access to necessary medical and other 

10 services for such survivors, including the serv11 ices described in subsection (c); and 

12 (D) lack of pediatric palliative care across 

13 all stages of illness and hospice services for pa14 tients approaching the end of life; and 

15 (2) make recommendations to provide improved 

16 access and payment plans for childhood cancer sur17 vivorship programs and palliative care, including 

18 psychosocial services and coverage of such services. 

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

20 this subsection are the following: 

21 (1) Coordinated multidisciplinary long-term fol22 low-up care with access to appropriate pediatric sub23 specialists and adult subspecialists with specific ex24 pertise in survivorship, including subspecialists with 

25 expertise in oncology, radiation oncology, surgery, 


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1 cardiology, psychiatry or psychology, endocrinology, 

2 pulmonology, nephrology, dermatology, gynecology, 

3 and urology. 

4 (2) Appropriate organ function testing (particu5 larly screening for potential problems at much 

6 younger ages than usually indicated in the general 

7 population) and treatment, including— 

8 (A) neuropsychological testing and mental 

9 health services; 

10 (B) fertility testing and treatment; 

11 (C) evaluation and treatment for endocrine 

12 disorders including growth hormone and testos13 terone replacement; 

14 (D) diagnostic imaging to screen for late 

15 effects of treatment (including subsequent can16 cers), such as mammograms and magnetic reso17 nance imaging testing to screen for possible 

18 breast cancer; 

19 (E) screening for cardiac problems, such 

20 as echocardiograms; 

21 (F) screening for osteoporosis with bone 

22 densitometry, including duel x-ray absorptiom23 etry and monitoring 25-hydroxyvitamin D lev24 els; 


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1 (G) dental coverage and necessary dental 

2 implants; 

3 (H) hearing aids and other prosthetic de4 vices; and 

5 (I) screening for lung problems, such as 

6 pulmonary function testing. 

7 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

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

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

10 Research Act of 2018’’ or the ‘‘Childhood Cancer STAR 

11 Act’’. 

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

13 this Act is as follows: 

Sec. 1. Short title; table of contents. 

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 Reporting on Childhood Cancer Activities 

Sec. 121. Reporting on childhood cancer research projects. 

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

SURVIVORSHIP, AND CAREGIVER SUPPORT 

Sec. 201. Cancer survivorship programs. 

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

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

Sec. 204. Technical amendment. 


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1 TITLE I—MAXIMIZING RESEARCH 

2 THROUGH DISCOVERY 

3 Subtitle A—Caroline Pryce Walker 

4 Conquer Childhood Cancer Re5 authorization Act 

6 SEC. 101. CHILDREN’S CANCER BIOREPOSITORIES AND BIO7 SPECIMEN RESEARCH. 

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

9 U.S.C. 285a–11) is amended— 

10 (1) in the section heading, by striking ‘‘RE11 SEARCH AND AWARENESS’’ and inserting ‘‘RE12 SEARCH, AWARENESS, AND SURVIVORSHIP’’; 

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

14 following: 

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

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

17 Director of NIH, may make awards to an entity or 

18 entities described in paragraph (4) to build upon ex19 isting research efforts to collect biospecimens and clin20 ical and demographic information of children, adoles21 cents, and young adults with selected cancer subtypes 

22 (and their recurrences) for which current treatments 

23 are least effective, in order to achieve a better under24 standing of the causes of such cancer subtypes (and 


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1 their recurrences), and the effects and outcomes of 

2 treatments for such cancers. 

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

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

5 out the following: 

6 ‘‘(A) Collect and store high-quality, donated 

7 biospecimens and associated clinical and demo8 graphic information on children, adolescents, 

9 and young adults diagnosed with cancer in the 

10 United States, focusing on children, adolescents, 

11 and young adults with cancer enrolled in clin12 ical trials for whom current treatments are least 

13 effective. Activities under this subparagraph may 

14 include storage of biospecimens and associated 

15 clinical and demographic data at existing bio16 repositories supported by the National Cancer 

17 Institute. 

18 ‘‘(B) Maintain an interoperable, secure, and 

19 searchable database on stored biospecimens and 

20 associated clinical and demographic data from 

21 children, adolescents, and young adults with can22 cer for the purposes of research by scientists and 

23 qualified health care professionals. 

24 ‘‘(C) Establish and implement procedures 

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1 specimens and clinical and demographic data 

2 from researchers and other qualified health care 

3 professionals. 

4 ‘‘(D) Provide access to biospecimens and 

5 clinical and demographic data from children, 

6 adolescents, and young adults with cancer to re7 searchers and qualified health care professionals 

8 for peer-reviewed research— 

9 ‘‘(i) consistent with the procedures es10 tablished pursuant to subparagraph (C); 

11 ‘‘(ii) only to the extent permitted by 

12 applicable Federal and State law; and 

13 ‘‘(iii) in a manner that protects per14 sonal privacy to the extent required by ap15 plicable Federal and State privacy law, at 

16 minimum. 

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

18 young adult with cancer shall be required under this 

19 subsection to contribute a specimen to a biorepository 

20 or share clinical or demographic data. 

21 ‘‘(4) APPLICATION; CONSIDERATIONS.— 

22 ‘‘(A) APPLICATION.—To be eligible to re23 ceive an award under paragraph (1) an entity 

24 shall submit an application to the Secretary at 

25 such a time, in such manner, and containing 


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1 such information as the Secretary may reason2 ably require. 

3 ‘‘(B) CONSIDERATIONS.—In evaluating ap4 plications submitted under subparagraph (A), 

5 the Secretary shall consider the existing infra6 structure of the entity that would allow for the 

7 timely capture of biospecimens and related clin8 ical and demographic information for children, 

9 adolescents, and young adults with cancer for 

10 whom current treatments are least effective. 

11 ‘‘(5) PRIVACY PROTECTIONS AND INFORMED CON12 SENT.— 

13 ‘‘(A) IN GENERAL.—The Secretary may not 

14 make an award under paragraph (1) to an enti15 ty unless the Secretary ensures that such enti16 ty— 

17 ‘‘(i) collects biospecimens and associ18 ated clinical and demographic information 

19 only from participants who have given their 

20 informed consent in accordance with Fed21 eral and State law; and 

22 ‘‘(ii) protects personal privacy to the 

23 extent required by applicable Federal and 

24 State law, at minimum. 


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1 ‘‘(B) INFORMED CONSENT.—The Secretary 

2 shall ensure biospecimens and associated clinical 

3 and demographic information are collected with 

4 informed consent, as described in subparagraph 

5 (A)(i). 

6 ‘‘(6) GUIDELINES AND OVERSIGHT.—The Sec7 retary shall develop and disseminate appropriate 

8 guidelines for the development and maintenance of the 

9 biorepositories supported under this subsection, in10 cluding appropriate oversight, to facilitate further re11 search on select cancer subtypes (and their 

12 recurrences) in children, adolescents, and young 

13 adults with such cancers (and their recurrences). 

14 ‘‘(7) COORDINATION.—To encourage the greatest 

15 possible efficiency and effectiveness of federally sup16 ported efforts with respect to the activities described 

17 in this subsection, the Secretary shall ensure the ap18 propriate coordination of programs supported under 

19 this section with existing federally supported cancer 

20 registry programs and the activities under section 

21 399E–1, as appropriate. 

22 ‘‘(8) SUPPLEMENT NOT SUPPLANT.—Funds pro23 vided under this subsection shall be used to supple24 ment, and not supplant, Federal and non-Federal 


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1 funds available for carrying out the activities de2 scribed in this subsection. 

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

4 date of enactment of the Childhood Cancer Survivor5 ship, Treatment, Access, and Research Act of 2018, 

6 the Secretary shall submit to Congress a report on— 

7 ‘‘(A) the number of biospecimens and cor8 responding clinical demographic data collected 

9 through the biospecimen research efforts sup10 ported under paragraph (1); 

11 ‘‘(B) the number of biospecimens and cor12 responding clinical demographic data requested 

13 for use by researchers; 

14 ‘‘(C) barriers to the collection of biospeci15 mens and corresponding clinical demographic 

16 data; 

17 ‘‘(D) barriers experienced by researchers or 

18 health care professionals in accessing the bio19 specimens and corresponding clinical demo20 graphic data necessary for use in research; and 

21 ‘‘(E) recommendations with respect to im22 proving the biospecimen and biorepository re23 search efforts under this subsection. 

24 ‘‘(10) DEFINITIONS.—For purposes of this sub25 section: 


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

2 grant, contract, or cooperative agreement deter3 mined by the Secretary. 

4 ‘‘(B) BIOSPECIMEN.—The term ‘biospeci5 men’ includes— 

6 ‘‘(i) solid tumor tissue or bone marrow; 

7 ‘‘(ii) normal or control tissue; 

8 ‘‘(iii) blood and plasma; 

9 ‘‘(iv) DNA and RNA extractions; 

10 ‘‘(v) familial DNA; and 

11 ‘‘(vi) any other sample relevant to can12 cer research, as required by the Secretary. 

13 ‘‘(C) CLINICAL AND DEMOGRAPHIC INFOR14 MATION.—The term ‘clinical and demographic 

15 information’ includes— 

16 ‘‘(i) date of diagnosis; 

17 ‘‘(ii) age at diagnosis; 

18 ‘‘(iii) the patient’s sex, race, ethnicity, 

19 and environmental exposures; 

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

21 ‘‘(v) site of metastases; 

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

23 ‘‘(vii) histologic diagnosis; 

24 ‘‘(viii) tumor marker data when avail25 able; 


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1 ‘‘(ix) treatment and outcome data; 

2 ‘‘(x) information related to specimen 

3 quality; and 

4 ‘‘(xi) any other applicable information 

5 required by the Secretary.’’; and 

6 (3) in subsection (c), by striking ‘‘(42 U.S.C. 202 

7 note)’’. 

8 SEC. 102. IMPROVING CHILDHOOD CANCER SURVEILLANCE. 

9 (a) IN GENERAL.—Section 399E–1 of the Public 

10 Health Service Act (42 U.S.C. 280e–3a) is amended— 

11 (1) in subsection (a)— 

12 (A) by striking ‘‘shall award a grant’’ and 

13 inserting ‘‘may make awards to State cancer 

14 registries’’; and 

15 (B) by striking ‘‘track the epidemiology of 

16 pediatric cancer into a comprehensive nation17 wide registry of actual occurrences of pediatric 

18 cancer’’ and inserting ‘‘collect information to 

19 better understand the epidemiology of cancer in 

20 children, adolescents, and young adults’’; and 

21 (C) by striking the second sentence and in22 serting ‘‘Such registries may be updated to in23 clude each occurrence of such cancers within a 

24 period of time designated by the Secretary.’’; 


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1 (2) by redesignating subsection (b) as subsection 

2 (d); 

3 (3) by inserting after subsection (a) the fol4 lowing: 

5 ‘‘(b) ACTIVITIES.—The grants described in subsection 

6 (a) may be used for— 

7 ‘‘(1) identifying, recruiting, and training poten8 tial sources for reporting childhood, adolescent, and 

9 young adult cancer cases; 

10 ‘‘(2) developing practices to ensure early inclu11 sion of childhood, adolescent, and young adult cancer 

12 cases in State cancer registries through the use of elec13 tronic reporting; 

14 ‘‘(3) collecting and submitting deidentified data 

15 to the Centers for Disease Control and Prevention for 

16 inclusion in a national database that includes infor17 mation on childhood, adolescent, and young adult 

18 cancers; and 

19 ‘‘(4) improving State cancer registries and the 

20 database described in paragraph (3), as appropriate, 

21 including to support the early inclusion of childhood, 

22 adolescent, and young adult cancer cases. 

23 ‘‘(c) COORDINATION.—To encourage the greatest pos24 sible efficiency and effectiveness of federally supported ef25 forts with respect to the activities described in this section, 


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1 the Secretary shall ensure the appropriate coordination of 

2 programs supported under this section with other federally 

3 supported cancer registry programs and the activities under 

4 section 417E(a), as appropriate.’’; and 

5 (4) in subsection (d), as so redesignated, by 

6 striking ‘‘registry established pursuant to subsection 

7 (a)’’ and inserting ‘‘activities described in this sec8 tion’’. 

9 (b) AUTHORIZATION OF APPROPRIATIONS.—Section 

10 417E(d) of the Public Health Service Act (42 U.S.C. 285a– 

11 11(d)) is amended— 

12 (1) by striking ‘‘2009 through 2013’’ and insert13 ing ‘‘2019 through 2023’’; and 

14 (2) by striking the second sentence. 

15 Subtitle B—Pediatric Expertise at 

16 NIH 

17 SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC 

18 ONCOLOGIST ON THE NATIONAL CANCER AD19 VISORY BOARD. 

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

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

22 (1) by striking ‘‘Board not less than five’’ and 

23 inserting ‘‘Board— 

24 ‘‘(I) not less than 5’’; 

25 (2) by inserting ‘‘and’’ after the semicolon; and 


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1 (3) by adding at the end the following: 

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

3 individual knowledgeable in pediatric oncology;’’. 

4 SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EX5 PERTISE AT THE NATIONAL CANCER INSTI6 TUTE. 

7 It is the sense of Congress that the Director of the Na8 tional Cancer Institute should ensure that all applicable 

9 study sections, committees, advisory groups, and panels at 

10 the National Cancer Institute include one or more qualified 

11 pediatric oncologists, as appropriate. 

12 Subtitle C—NIH Reporting on 

13 Childhood Cancer Activities 

14 SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH 

15 PROJECTS. 

16 The Director of the National Institutes of Health shall 

17 ensure that childhood cancer research projects conducted or 

18 supported by the National Institutes of Health are included 

19 in appropriate reports to Congress, which may include the 

20 Pediatric Research Initiative report. 


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1 TITLE II—MAXIMIZING DELIV2 ERY: CARE, QUALITY OF LIFE, 

3 SURVIVORSHIP, AND CARE4 GIVER SUPPORT 

5 SEC. 201. CANCER SURVIVORSHIP PROGRAMS. 

6 (a) PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS

7 OF CARE FOR PEDIATRIC CANCER SURVIVORS.— 

8 (1) IN GENERAL.—The Secretary of Health and 

9 Human Services (referred to in this section as the 

10 ‘‘Secretary’’) may make awards to eligible entities to 

11 establish pilot programs to develop, study, or evaluate 

12 model systems for monitoring and caring for child13 hood cancer survivors throughout their lifespan, in14 cluding evaluation of models for transition to adult 

15 care and care coordination. 

16 (2) AWARDS.— 

17 (A) TYPES OF ENTITIES.—In making 

18 awards under this subsection, the Secretary 

19 shall, to the extent practicable, include— 

20 (i) small, medium, and large-sized eli21 gible entities; and 

22 (ii) sites located in different geographic 

23 areas, including rural and urban areas. 

24 (B) ELIGIBLE ENTITIES.—In this sub25 section, the term ‘‘eligible entity’’ means— 


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1 (i) a medical school; 

2 (ii) a children’s hospital; 

3 (iii) a cancer center; 

4 (iv) a community-based medical facil5 ity; or 

6 (v) any other entity with significant 

7 experience and expertise in treating sur8 vivors of childhood cancers. 

9 (3) USE OF FUNDS.—Funds awarded under this 

10 subsection may be used— 

11 (A) to develop, study, or evaluate one or 

12 more models for monitoring and caring for can13 cer survivors; and 

14 (B) in developing, studying, and evaluating 

15 such models, to give special emphasis to— 

16 (i) design of models of follow-up care, 

17 monitoring, and other survivorship pro18 grams (including peer support and men19 toring programs); 

20 (ii) development of models for pro21 viding multidisciplinary care; 

22 (iii) dissemination of information to 

23 health care providers about culturally and 

24 linguistically appropriate follow-up care for 


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1 cancer survivors and their families, as ap2 propriate and practicable; 

3 (iv) development of psychosocial and 

4 support programs to improve the quality of 

5 life of cancer survivors and their families, 

6 which may include peer support and men7 toring programs; 

8 (v) design of systems for the effective 

9 transfer of treatment information and care 

10 summaries from cancer care providers to 

11 other health care providers (including risk 

12 factors and a plan for recommended follow13 up care); 

14 (vi) dissemination of the information 

15 and programs described in clauses (i) 

16 through (v) to other health care providers 

17 (including primary care physicians and in18 ternists) and to cancer survivors and their 

19 families, where appropriate and in accord20 ance with Federal and State law; and 

21 (vii) development of initiatives that 

22 promote the coordination and effective tran23 sition of care between cancer care providers, 

24 primary care physicians, mental health 

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1 sionals, as appropriate, including models 

2 that use a team-based or multi-disciplinary 

3 approach to care. 

4 (b) WORKFORCE DEVELOPMENT FOR HEALTH CARE

5 PROVIDERS ON MEDICAL AND PSYCHOSOCIAL CARE FOR

6 CHILDHOOD CANCER SURVIVORS.— 

7 (1) IN GENERAL.—The Secretary shall, not later 

8 than 1 year after the date of enactment of this Act, 

9 conduct a review of the activities of the Department 

10 of Health and Human Services related to workforce 

11 development for health care providers who treat pedi12 atric cancer patients and survivors. Such review shall 

13 include— 

14 (A) an assessment of the effectiveness of sup15 portive psychosocial care services for pediatric 

16 cancer patients and survivors, including pedi17 atric cancer survivorship care patient navigators 

18 and peer support programs; 

19 (B) identification of existing models rel20 evant to providing medical and psychosocial 

21 services to individuals surviving pediatric can22 cers, and programs related to training for health 

23 professionals who provide such services to indi24 viduals surviving pediatric cancers; and 


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1 (C) recommendations for improving the 

2 provision of psychosocial care for pediatric can3 cer survivors and patients. 

4 (2) REPORT.—Not later than 2 years after the 

5 date of enactment of this Act, the Secretary shall sub6 mit to the Committee on Health, Education, Labor, 

7 and Pensions of the Senate and Committee on Energy 

8 and Commerce of the House of Representatives, a re9 port concerning the findings and recommendations 

10 from the review conducted under paragraph (1). 

11 SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CAN12 CER SURVIVORS. 

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

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

15 101, is further amended by striking subsection (b) and in16 serting the following: 

17 ‘‘(b) IMPROVING CARE FOR PEDIATRIC CANCER SUR18 VIVORS.— 

19 ‘‘(1) RESEARCH ON PEDIATRIC CANCER SURVI20 VORSHIP.—The Director of NIH, in coordination 

21 with ongoing research activities, may continue to con22 duct or support pediatric cancer survivorship research 

23 including in any of the following areas: 

24 ‘‘(A) Outcomes of pediatric cancer sur25 vivors, including within minority or other mediVerDate Sep 11 2014 21:39 Mar 12, 2018 Jkt 079200 PO 00000 Frm 00049 Fmt 6652 Sfmt 6203 E:\BILLS\S292.RS S292

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1 cally underserved populations and with respect 

2 to health disparities of such outcomes. 

3 ‘‘(B) Barriers to follow-up care for pedi4 atric cancer survivors, including within minor5 ity or other medically underserved populations. 

6 ‘‘(C) The impact of relevant factors, which 

7 may include familial, socioeconomic, and other 

8 environmental factors, on treatment outcomes 

9 and survivorship. 

10 ‘‘(D) The development of indicators used for 

11 long-term follow-up and analysis of the late ef12 fects of cancer treatment for pediatric cancer 

13 survivors. 

14 ‘‘(E) The identification of, as applicable— 

15 ‘‘(i) risk factors associated with the 

16 late effects of cancer treatment; 

17 ‘‘(ii) predictors of adverse 

18 neurocognitive and psychosocial outcomes; 

19 and 

20 ‘‘(iii) the molecular basis of long-term 

21 complications. 

22 ‘‘(F) The development of targeted interven23 tions to reduce the burden of morbidity borne by 

24 cancer survivors in order to protect such cancer 

25 survivors from the late effects of cancer. 


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1 ‘‘(2) BALANCED APPROACH.—In conducting or 

2 supporting research under paragraph (1)(A)(i) on pe3 diatric cancer survivors within minority or other 

4 medically underserved populations, the Director of 

5 NIH shall ensure that such research addresses both the 

6 physical and the psychological needs of such sur7 vivors, as appropriate.’’. 

8 SEC. 203. BEST PRACTICES FOR LONG-TERM FOLLOW-UP 

9 SERVICES FOR PEDIATRIC CANCER SUR10 VIVORS. 

11 The Secretary of Health and Human Services may fa12 cilitate the identification of best practices for childhood and 

13 adolescent cancer survivorship care, and, as appropriate, 

14 may consult with individuals who have expertise in late 

15 effects of disease and treatment of childhood and adolescent 

16 cancers, which may include— 

17 (1) oncologists, which may include pediatric 

18 oncologists; 

19 (2) primary care providers engaged in survivor20 ship care; 

21 (3) survivors of childhood and adolescent cancer; 

22 (4) parents of children and adolescents who have 

23 been diagnosed with and treated for cancer and par24 ents of long-term survivors; 

25 (5) nurses and social workers; 


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1 (6) mental health professionals; 

2 (7) allied health professionals, including physical 

3 therapists and occupational therapists; and 

4 (8) others, as the Secretary determines appro5 priate. 

6 SEC. 204. TECHNICAL AMENDMENT. 

7 (a) IN GENERAL.—Section 3 of the Hematological 

8 Cancer Research Investment and Education Act of 2002 

9 (Public Law 107–172; 116 Stat. 541) is amended by strik10 ing ‘‘section 419C’’ and inserting ‘‘section 417C’’. 

11 (b) EFFECTIVE DATE.—The amendment made by sub12 section (a) shall take effect as if included in section 3 of 

13 the Hematological Cancer Research Investment and Edu14 cation Act of 2002 (Public Law 107–172; 116 Stat. 541). 


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daltland on DSKBBV9HB2PROD with BILLS
Calendar No. 342 

115TH CONGRESS 

2D SESSION S. 292 

A BILL 

To maximize discovery, and accelerate development 

treatments, and for other purposes. and availability, of promising childhood cancer 

MARCH 12, 2018 

Reported with an amendment 


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