[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 292 Reported in Senate (RS)]

<DOC>





                                                       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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

<DELETED>SECTION 1. SHORT TITLE; TABLE OF CONTENTS.</DELETED>

<DELETED>    (a) Short Title.--This Act may be cited as the ``Childhood 
Cancer Survivorship, Treatment, Access, and Research Act of 2017'' or 
the ``Childhood Cancer STAR Act''.</DELETED>
<DELETED>    (b) Table of Contents.--The table of contents for this Act 
is as follows:</DELETED>

<DELETED>Sec. 1. Short title; table of contents.
<DELETED>Sec. 2. Findings.
        <DELETED>TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY

  <DELETED>Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer 
                          Reauthorization Act

<DELETED>Sec. 101. Children's cancer biorepositories and biospecimen 
                            research.
<DELETED>Sec. 102. Improving Childhood Cancer Surveillance.
            <DELETED>Subtitle B--Pediatric Expertise at NIH

<DELETED>Sec. 111. Inclusion of at least one pediatric oncologist on 
                            the National Cancer Advisory Board.
<DELETED>Sec. 112. Sense of Congress regarding pediatric expertise at 
                            the National Cancer Institute.
     <DELETED>Subtitle C--NIH Report on Childhood Cancer Activities

<DELETED>Sec. 121. Reporting on childhood cancer research projects.
    <DELETED>TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, 
                  SURVIVORSHIP, AND CAREGIVER SUPPORT

  <DELETED>Subtitle A--Childhood Cancer Survivors' Quality of Life Act

<DELETED>Sec. 201. Cancer survivorship programs.
<DELETED>Sec. 202. Grants to improve care for pediatric cancer 
                            survivors.
<DELETED>Sec. 203. Comprehensive long-term follow-up services for 
                            pediatric cancer survivors.
<DELETED>Sec. 204. Survivorship demonstration project.
     <DELETED>Subtitle B--Coverage and Payment of High Quality Care

<DELETED>Sec. 211. Report by the Comptroller General.

<DELETED>SEC. 2. FINDINGS.</DELETED>

<DELETED>    Congress makes the following findings:</DELETED>
        <DELETED>    (1) Each year in the United States there are an 
        estimated 15,780 children between birth and the age of 19 
        diagnosed with cancer. Approximately 1 in 285 children in the 
        United States will be diagnosed with cancer before their 20th 
        birthday.</DELETED>
        <DELETED>    (2) In 1960, only 4 percent of children with 
        cancer survived more than 5 years, but today, cure rates have 
        increased to over 80 percent for children and adolescents under 
        age 20.</DELETED>
        <DELETED>    (3) While the cure rates for some childhood 
        cancers are now over 80 percent, the survival rates for many 
        types of cancers in children remain extremely low.</DELETED>
        <DELETED>    (4) According to the Centers for Disease Control 
        and Prevention, cancer continues to be the leading cause of 
        death by disease in children and adolescents under the age of 
        14.</DELETED>
        <DELETED>    (5) By 2020, the population of childhood cancers 
        survivors is expected to be 500,000 individuals.</DELETED>
        <DELETED>    (6) As many as two-thirds of childhood cancer 
        survivors are likely to experience at least one late effect of 
        treatment, with as many as one-fourth experiencing a late 
        effect that is serious or life-threatening. Common late effects 
        of childhood cancer are neurocognitive, psychological, 
        cardiopulmonary, endocrine, and musculoskeletal effects, 
        secondary malignancies, and early death.</DELETED>
        <DELETED>    (7) As a result of disparities in the delivery of 
        cancer care, minority, low-income, and other medically 
        underserved children are more likely to be diagnosed with late 
        stage disease, experience poorer treatment outcomes, have 
        shorter survival time with less quality of life, and experience 
        a substantially greater likelihood of cancer death.</DELETED>
        <DELETED>    (8) Collection of biospecimens, along with 
        clinical and outcome data, on children and adolescents with 
        cancer in the United States is necessary to improve childhood 
        and adolescent cancer treatments and cures. Currently 
        biospecimens, and clinical and outcome data, are collected for 
        less than half of children in the United States with 
        cancer.</DELETED>
        <DELETED>    (9) The late effects of cancer treatment may 
        change as therapies evolve, which means that the monitoring and 
        care of cancer survivors may need to be modified on a routine 
        basis.</DELETED>
        <DELETED>    (10) Despite the intense stress caused by 
        childhood cancer, there is a lack of standardized and 
        coordinated psychosocial care for the children and their 
        families, from the date of diagnosis through treatment and 
        survivorship.</DELETED>
        <DELETED>    (11) The National Academy of Medicine, in its 
        report on cancer survivorship entitled ``Childhood Cancer 
        Survivorship: Improving Care and Quality of Life'', states that 
        an organized system of care and a method of care for pediatric 
        cancer survivors is needed.</DELETED>
        <DELETED>    (12) Focused and well-designed research and pilot 
        health delivery programs can answer questions about the optimal 
        ways to provide health care, follow-up monitoring services, and 
        survivorship care to those diagnosed with childhood cancer and 
        contribute to improvements in the quality of care and quality 
        of life of those individuals through adulthood.</DELETED>
        <DELETED>    (13) The National Institutes of Health, including 
        the National Cancer Institute, invest approximately half of 
        their annual appropriations to support basic research that 
        serves as the foundation for translational and clinical 
        research for all diseases and conditions, with the potential to 
        lead to breakthroughs for children with cancer. Virtually all 
        progress against cancer--in both children and adults--has been 
        founded in basic research, often in areas not directly related 
        to the disease.</DELETED>
        <DELETED>    (14) The National Cancer Institute supports a 
        number of key research programs specifically to advance 
        childhood cancer care, including precision medicine clinical 
        trials for children with cancer, the Children's Oncology Group 
        (part of the National Clinical Trials Network of the National 
        Cancer Institute), the Pediatric Preclinical Testing 
        Consortium, the Pediatric Brain Tumor Consortium, the Childhood 
        Cancer Survivor Study, the Therapeutically Applicable Research 
        to Generate Effective Treatments program and related pediatric 
        cancer genomics research (including the Pediatric MATCH 
        Precision Medicine trial), and the Pediatric Oncology Branch 
        (part of the intramural program of the National Cancer 
        Institute, whose mission is to develop new treatments for 
        pediatric cancer).</DELETED>

   <DELETED>TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY</DELETED>

  <DELETED>Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer 
                     Reauthorization Act</DELETED>

<DELETED>SEC. 101. CHILDREN'S CANCER BIOREPOSITORIES AND BIOSPECIMEN 
              RESEARCH.</DELETED>

<DELETED>    Section 417E of the Public Health Service Act (42 U.S.C. 
285a-11) is amended--</DELETED>
        <DELETED>    (1) by striking subsection (a) and inserting the 
        following:</DELETED>
<DELETED>    ``(a) Children's Cancer Biorepositories.--</DELETED>
        <DELETED>    ``(1) Award.--The Secretary, acting through the 
        Director of NIH, may make awards to an entity or entities 
        described in paragraph (4) to build upon existing initiatives 
        to collect biospecimens and clinical and demographic 
        information with a goal of collection for the vast majority of 
        all children, adolescents, and young adults with selected 
        cancer subtypes (and their recurrences) for which current 
        treatments are least effective, through one or more biospecimen 
        research efforts designed to achieve a better understanding of 
        the cause of such cancers (and their recurrences) and the 
        effects of treatments for such cancers.</DELETED>
        <DELETED>    ``(2) Use of funds.--Amounts received under an 
        award under paragraph (1) may be used to carry out the 
        following:</DELETED>
                <DELETED>    ``(A) Acquire, preserve, and store high-
                quality, donated biospecimens and associated clinical 
                and demographic information on children, adolescents, 
                and young adults diagnosed with cancer in the United 
                States, focusing on children and adolescents enrolled 
                in clinical trials for whom current treatments are 
                least effective. Activities under this subparagraph may 
                include storage of biospecimens and associated clinical 
                and demographic data at biorepositories supported by 
                the National Cancer Institute, such as the Children's 
                Oncology Group Biorepository and the Pediatric 
                Cooperative Human Tissue Network as well as through 
                biorepositories established as appropriate to support 
                the scientific needs of future research 
                efforts.</DELETED>
                <DELETED>    ``(B) Make such information publicly 
                available, including the repositories described in 
                subparagraph (A).</DELETED>
                <DELETED>    ``(C) Maintain a secure searchable 
                database on stored biospecimens and associated clinical 
                and demographic data from children, adolescents, and 
                young adults with cancer for the conduct of research by 
                scientists and qualified health care 
                professionals.</DELETED>
                <DELETED>    ``(D) Establish procedures for evaluating 
                applications for access to such biospecimens and 
                clinical and demographic data from researchers and 
                other qualified health care professionals.</DELETED>
                <DELETED>    ``(E) Make available and distribute 
                biospecimens and clinical and demographic data from 
                children, adolescents, and young adults with cancer to 
                researchers and qualified health care professionals for 
                peer-reviewed research at a minimal cost.</DELETED>
        <DELETED>    ``(3) No requirement.--No child, adolescent, or 
        young adult with cancer shall be required under this subsection 
        to contribute a specimen to a biorepository or share clinical 
        or demographic data.</DELETED>
        <DELETED>    ``(4) Application; considerations.--</DELETED>
                <DELETED>    ``(A) Application.--To be eligible to 
                receive an award under paragraph (1) an entity shall 
                submit an application to the Secretary at such a time, 
                in such manner, and containing such information as the 
                Secretary may reasonably require.</DELETED>
                <DELETED>    ``(B) Considerations.--In evaluating the 
                applications in subparagraph (A), the Secretary shall 
                consider the existing infrastructure of the entity that 
                would allow for the timely capture of biospecimens and 
                related clinical and demographic information for 
                children, adolescents, and young adults with 
                cancer.</DELETED>
        <DELETED>    ``(5) Privacy protections; consent.--</DELETED>
                <DELETED>    ``(A) In general.--The Secretary may not 
                make an award under paragraph (1) to an entity unless 
                the Secretary ensures that such entity--</DELETED>
                        <DELETED>    ``(i) collects biospecimens and 
                        associated clinical and demographic information 
                        from children and adolescents with appropriate 
                        permission from parents or legal guardians in 
                        accordance with Federal and State law; 
                        and</DELETED>
                        <DELETED>    ``(ii) adheres to strict 
                        confidentiality to protect the identity and 
                        privacy of patients in accordance with Federal 
                        and State law.</DELETED>
                <DELETED>    ``(B) Consent.--The Secretary shall 
                establish an appropriate process for achieving consent 
                from the patient, parent, or legal guardian.</DELETED>
        <DELETED>    ``(6) Single point of access; standard data; 
        guidelines and oversight.--</DELETED>
                <DELETED>    ``(A) Single point of access.--The 
                Secretary shall ensure that each biorepository 
                supported under paragraph (1) has electronically 
                searchable data for use by researchers and other 
                qualified health care professionals in the manner and 
                to the extent defined by the Secretary.</DELETED>
                <DELETED>    ``(B) Standard data.--The Secretary shall 
                require all recipients of an award under paragraph (1) 
                to make available a standard dataset for the purposes 
                of subparagraph (A) in a standard electronic format 
                that enables researchers and qualified health care 
                professionals to search.</DELETED>
                <DELETED>    ``(C) Guidelines and oversight.--The 
                Secretary shall develop and disseminate appropriate 
                guidelines for the development and maintenance of the 
                biorepositories supported under this subsection, 
                including appropriate oversight.</DELETED>
        <DELETED>    ``(7) Coordination.--The Secretary shall ensure 
        that clinical and demographic information collected in 
        accordance with this subsection is collected in coordination 
        with the information collected under section 399E-1.</DELETED>
        <DELETED>    ``(8) Prohibition on use of funds.--Funds made 
        available to carry out this subsection shall not be used to 
        acquire, preserve, or maintain a biospecimen collected from a 
        patient if such activity is already covered by funds available 
        from the National Cancer Institute for such purpose.</DELETED>
        <DELETED>    ``(9) Report.--Not later than 4 years after the 
        date of enactment of the Childhood Cancer Survivorship, 
        Treatment, Access, and Research Act of 2017, the Secretary 
        shall submit to Congress a report on--</DELETED>
                <DELETED>    ``(A) the number of biospecimens and 
                corresponding clinical demographic data collected 
                through the biospecimen research efforts supported 
                under paragraph (1);</DELETED>
                <DELETED>    ``(B) the number of biospecimens and 
                corresponding clinical demographic data requested for 
                use by researchers;</DELETED>
                <DELETED>    ``(C) any barriers to the collection of 
                biospecimens and corresponding clinical demographic 
                data;</DELETED>
                <DELETED>    ``(D) any barriers experienced by 
                researchers or health care professionals in accessing 
                the biospecimens and corresponding clinical demographic 
                data necessary for use in research; and</DELETED>
                <DELETED>    ``(E) any recommendations with respect to 
                improving the biospecimen and biorepository research 
                efforts under this subsection.</DELETED>
        <DELETED>    ``(10) Definitions.--For purposes of this 
        subsection:</DELETED>
                <DELETED>    ``(A) Award.--The term `award' includes a 
                grant, contract, cooperative agreement, or other 
                transaction determined by the Secretary.</DELETED>
                <DELETED>    ``(B) Biospecimen.--The term `biospecimen' 
                includes--</DELETED>
                        <DELETED>    ``(i) solid tumor tissue or bone 
                        marrow;</DELETED>
                        <DELETED>    ``(ii) normal or control 
                        tissue;</DELETED>
                        <DELETED>    ``(iii) blood and 
                        plasma;</DELETED>
                        <DELETED>    ``(iv) DNA and RNA 
                        extractions;</DELETED>
                        <DELETED>    ``(v) familial DNA; and</DELETED>
                        <DELETED>    ``(vi) any other sample required 
                        by the Secretary.</DELETED>
                <DELETED>    ``(C) Clinical and demographic 
                information.--The term `clinical and demographic 
                information' includes--</DELETED>
                        <DELETED>    ``(i) date of diagnosis;</DELETED>
                        <DELETED>    ``(ii) age at diagnosis;</DELETED>
                        <DELETED>    ``(iii) the patient's gender, 
                        race, ethnicity, and environmental 
                        exposures;</DELETED>
                        <DELETED>    ``(iv) extent of disease at 
                        enrollment;</DELETED>
                        <DELETED>    ``(v) site of 
                        metastases;</DELETED>
                        <DELETED>    ``(vi) location of primary tumor 
                        coded;</DELETED>
                        <DELETED>    ``(vii) histologic 
                        diagnosis;</DELETED>
                        <DELETED>    ``(viii) tumor marker data when 
                        available;</DELETED>
                        <DELETED>    ``(ix) treatment and outcome 
                        data;</DELETED>
                        <DELETED>    ``(x) information related to 
                        specimen quality; and</DELETED>
                        <DELETED>    ``(xi) any other information 
                        required by the Secretary.''; and</DELETED>
        <DELETED>    (2) in subsection (d)--</DELETED>
                <DELETED>    (A) by striking ``and section 399E-1'' and 
                inserting ``and sections 317U, 399E-1, 417H, and 417H-
                1'';</DELETED>
                <DELETED>    (B) by striking ``2009 through 2013'' and 
                inserting ``2018 through 2022''; and</DELETED>
                <DELETED>    (C) by striking ``such purpose'' and 
                inserting ``such purposes''.</DELETED>

<DELETED>SEC. 102. IMPROVING CHILDHOOD CANCER SURVEILLANCE.</DELETED>

<DELETED>    Section 399E-1 of the Public Health Service Act (42 U.S.C. 
280e-3a) is amended--</DELETED>
        <DELETED>    (1) by redesignating subsection (b) as subsection 
        (d); and</DELETED>
        <DELETED>    (2) by striking subsection (a) and inserting the 
        following:</DELETED>
<DELETED>    ``(a) In General.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, may make 
awards to State cancer registries to enhance and expand infrastructure 
to track the epidemiology of cancer in children, adolescents, and young 
adults. Such registries may be updated to include each occurrence of 
such cancers within a period of time designated by the 
Secretary.</DELETED>
<DELETED>    ``(b) Activities.--The grants described in subsection (a) 
may be used for--</DELETED>
        <DELETED>    ``(1) identifying, recruiting, and training all 
        potential sources for reporting childhood, adolescent, and 
        young adult cancer cases;</DELETED>
        <DELETED>    ``(2) developing procedures to implement early 
        inclusion of childhood, adolescent, and young adult cancer 
        cases on State cancer registries through the use of electronic 
        reporting;</DELETED>
        <DELETED>    ``(3) purchasing infrastructure to support the 
        early inclusion of childhood, adolescent, and young adult 
        cancer cases on such registries;</DELETED>
        <DELETED>    ``(4) submitting deidentified data to the Centers 
        for Disease Control and Prevention for inclusion in a national 
        database of childhood, adolescent, and young adult cancers; 
        and</DELETED>
        <DELETED>    ``(5) tracking the late effects of childhood, 
        adolescent, and young adult cancers.</DELETED>
<DELETED>    ``(c) Coordination.--The Secretary shall ensure that 
information collected through State cancer registries under this 
section is collected in coordination with clinical and demographic 
information collected under section 417E(a), as 
appropriate.''.</DELETED>

       <DELETED>Subtitle B--Pediatric Expertise at NIH</DELETED>

<DELETED>SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC ONCOLOGIST ON 
              THE NATIONAL CANCER ADVISORY BOARD.</DELETED>

<DELETED>    Clause (iii) of section 406(h)(2)(A) of the Public Health 
Service Act (42 U.S.C. 284a(h)(2)(A)) is amended to read as 
follows:</DELETED>
        <DELETED>    ``(iii) of the members appointed to the Board--
        </DELETED>
                <DELETED>    ``(I) not less than 5 members shall be 
                individuals knowledgeable in environmental 
                carcinogenesis (including carcinogenesis involving 
                occupational and dietary factors); and</DELETED>
                <DELETED>    ``(II) not less than one member shall be 
                an individual knowledgeable in pediatric 
                oncology;''.</DELETED>

<DELETED>SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EXPERTISE AT 
              THE NATIONAL CANCER INSTITUTE.</DELETED>

<DELETED>    It is the sense of Congress that the Director of the 
National Cancer Institute should ensure that all applicable study 
sections, committees, advisory groups, and panels at the National 
Cancer Institute include one or more qualified pediatric oncologists, 
as appropriate.</DELETED>

          <DELETED>Subtitle C--NIH Report on Childhood Cancer 
                          Activities</DELETED>

<DELETED>SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH 
              PROJECTS.</DELETED>

<DELETED>    Section 409D(c)(3) of the Public Health Service Act (42 
U.S.C. 284h(c)(3)) is amended by--</DELETED>
        <DELETED>    (1) striking ``public on'' and inserting ``public 
        on--</DELETED>
                <DELETED>    ``(A)'';</DELETED>
        <DELETED>    (2) striking the period at the end and inserting 
        ``; and''; and</DELETED>
        <DELETED>    (3) inserting at the end the following:</DELETED>
                <DELETED>    ``(B) childhood cancer research projects 
                conducted or supported by the National Institutes of 
                Health.''.</DELETED>

    <DELETED>TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, 
             SURVIVORSHIP, AND CAREGIVER SUPPORT</DELETED>

   <DELETED>Subtitle A--Childhood Cancer Survivors' Quality of Life 
                             Act</DELETED>

<DELETED>SEC. 201. CANCER SURVIVORSHIP PROGRAMS.</DELETED>

<DELETED>    (a) Cancer Survivorship Programs.--The Public Health 
Service Act is amended by inserting after section 399N of such Act (42 
U.S.C. 280g-2) the following:</DELETED>

<DELETED>``SEC. 399N-1. PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS OF CARE 
              FOR PEDIATRIC CANCER SURVIVORS.</DELETED>

<DELETED>    ``(a) In General.--Not later than 1 year after the date of 
enactment of the Childhood Cancer Survivorship, Treatment, Access, and 
Research Act of 2017, the Secretary may make awards to eligible 
entities to establish pilot programs to develop, study, or evaluate 
model systems for monitoring and caring for childhood cancer survivors 
throughout their lifespan, including evaluation of shared care and 
medical home and clinic based models for transition to adult 
care.</DELETED>
<DELETED>    ``(b) Eligible Entities.--In this section, the term 
`eligible entity' means--</DELETED>
        <DELETED>    ``(1) a medical school;</DELETED>
        <DELETED>    ``(2) a children's hospital;</DELETED>
        <DELETED>    ``(3) a cancer center;</DELETED>
        <DELETED>    ``(4) a community-based medical facility; 
        or</DELETED>
        <DELETED>    ``(5) any other entity with significant experience 
        and expertise in treating survivors of childhood 
        cancers.</DELETED>
<DELETED>    ``(c) Use of Funds.--The Secretary may make an award under 
this section to an eligible entity only if the entity agrees--
</DELETED>
        <DELETED>    ``(1) to use the award to establish a pilot 
        program to develop, study, or evaluate one or more model 
        systems for monitoring and caring for cancer survivors; 
        and</DELETED>
        <DELETED>    ``(2) in developing, studying, and evaluating such 
        systems, to give special emphasis to--</DELETED>
                <DELETED>    ``(A) design of protocols for different 
                models of follow-up care, monitoring, and other 
                survivorship programs (including peer support and 
                mentoring programs);</DELETED>
                <DELETED>    ``(B) development of various models for 
                providing multidisciplinary care;</DELETED>
                <DELETED>    ``(C) dissemination of information and the 
                provision of training to health care providers about 
                how to provide linguistically and culturally competent 
                follow-up care and monitoring to cancer survivors and 
                their families;</DELETED>
                <DELETED>    ``(D) development of psychosocial 
                interventions and support programs to improve the 
                quality of life of cancer survivors and their 
                families;</DELETED>
                <DELETED>    ``(E) design of systems for the effective 
                transfer of treatment information and care summaries 
                from cancer care providers to other health care 
                providers (including risk factors and a plan for 
                recommended follow-up care);</DELETED>
                <DELETED>    ``(F) dissemination of the information and 
                programs described in subparagraphs (A) through (E) to 
                other health care providers (including primary care 
                physicians and internists) and to cancer survivors and 
                their families, where appropriate; and</DELETED>
                <DELETED>    ``(G) development of initiatives that 
                promote the coordination and effective transition of 
                care between cancer care providers, primary care 
                physicians, and mental health professionals.</DELETED>

<DELETED>``SEC. 399N-2. WORKFORCE DEVELOPMENT COLLABORATIVE ON MEDICAL 
              AND PSYCHOSOCIAL CARE FOR CHILDHOOD CANCER 
              SURVIVORS.</DELETED>

<DELETED>    ``(a) In General.--The Secretary shall, not later than 1 
year after the date of enactment of the Childhood Cancer Survivorship, 
Treatment, Access, and Research Act of 2017, convene a Workforce 
Development Collaborative on Medical and Psychosocial Care for 
Pediatric Cancer Survivors (referred to in this section as the 
`Collaborative'). The Collaborative shall be a cross-specialty, 
multidisciplinary group composed of educators, consumer and family 
advocates, and providers of psychosocial and biomedical health 
services.</DELETED>
<DELETED>    ``(b) Goals and Reports.--The Collaborative shall submit 
to the Secretary a report establishing a plan to meet the following 
objectives for medical and psychosocial care workforce 
development:</DELETED>
        <DELETED>    ``(1) Identifying, refining, and broadly 
        disseminating to health care educators information about 
        workforce competencies, models, and curricula relevant to 
        providing medical and psychosocial services to persons 
        surviving pediatric cancers.</DELETED>
        <DELETED>    ``(2) Adapting curricula for continuing education 
        of the existing workforce using efficient workplace-based 
        learning approaches.</DELETED>
        <DELETED>    ``(3) Developing the skills of faculty and other 
        trainers in teaching psychosocial health care using evidence-
        based teaching strategies.</DELETED>
        <DELETED>    ``(4) Strengthening the emphasis on psychosocial 
        health care in educational accreditation standards and 
        professional licensing and certification exams by recommending 
        revisions to the relevant oversight organizations.</DELETED>
        <DELETED>    ``(5) Evaluating the effectiveness of patient 
        navigators in pediatric cancer survivorship care.</DELETED>
        <DELETED>    ``(6) Evaluating the effectiveness of peer support 
        programs in the psychosocial care of pediatric cancer patients 
        and survivors.''.</DELETED>
<DELETED>    (b) Technical Amendment.--</DELETED>
        <DELETED>    (1) In general.--Section 3 of the Hematological 
        Cancer Research Investment and Education Act of 2002 (Public 
        Law 107-172; 116 Stat. 541) is amended by striking ``section 
        419C'' and inserting ``section 417C''.</DELETED>
        <DELETED>    (2) Effective date.--The amendment made by 
        paragraph (1) shall take effect as if included in section 3 of 
        the Hematological Cancer Research Investment and Education Act 
        of 2002 (Public Law 107-172; 116 Stat. 541).</DELETED>

<DELETED>SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CANCER 
              SURVIVORS.</DELETED>

<DELETED>    (a) In General.--Section 417E of the Public Health Service 
Act (42 U.S.C. 285a-11), as amended by section 101, is further 
amended--</DELETED>
        <DELETED>    (1) in the section heading, by striking ``research 
        and awareness'' and inserting ``research, awareness, and 
        survivorship''; and</DELETED>
        <DELETED>    (2) by striking subsection (b) and inserting the 
        following:</DELETED>
<DELETED>    ``(b) Improving Care for Pediatric Cancer Survivors.--
</DELETED>
        <DELETED>    ``(1) Research on causes of health disparities in 
        pediatric cancer survivorship.--</DELETED>
                <DELETED>    ``(A) Research awards.--The Director of 
                NIH, in coordination with ongoing research activities, 
                may conduct or support pediatric cancer survivorship 
                research including in any of the following 
                areas:</DELETED>
                        <DELETED>    ``(i) Needs and outcomes of 
                        pediatric cancer survivors within minority or 
                        other medically underserved 
                        populations.</DELETED>
                        <DELETED>    ``(ii) Health disparities in 
                        pediatric cancer survivorship outcomes within 
                        minority or other medically underserved 
                        populations.</DELETED>
                        <DELETED>    ``(iii) Barriers that pediatric 
                        cancer survivors within minority or other 
                        medically underserved populations face in 
                        receiving follow-up care.</DELETED>
                        <DELETED>    ``(iv) Familial, socioeconomic, 
                        and other environmental factors and the impact 
                        of such factors on treatment outcomes and 
                        survivorship.</DELETED>
                <DELETED>    ``(B) Balanced approach.--In conducting or 
                supporting research under subparagraph (A)(i) on 
                pediatric cancer survivors within minority or other 
                medically underserved populations, the Director of NIH 
                shall ensure that such research addresses both the 
                physical and the psychological needs of such survivors, 
                as appropriate.</DELETED>
        <DELETED>    ``(2) Research on late effects and follow-up care 
        for pediatric cancer survivors.--The Director of NIH, in 
        coordination with ongoing research activities, may conduct or 
        support research on follow-up care for pediatric cancer 
        survivors, including in any of the following areas:</DELETED>
                <DELETED>    ``(A) The development of indicators used 
                for long-term patient tracking and analysis of the late 
                effects of cancer treatment for pediatric cancer 
                survivors.</DELETED>
                <DELETED>    ``(B) The identification of risk factors 
                associated with the late effects of cancer 
                treatment.</DELETED>
                <DELETED>    ``(C) The identification of predictors of 
                adverse neurocognitive and psychosocial 
                outcomes.</DELETED>
                <DELETED>    ``(D) The identification of the molecular 
                underpinnings of long-term complications.</DELETED>
                <DELETED>    ``(E) The development of risk prediction 
                models to identify those at highest risk of long-term 
                complications.</DELETED>
                <DELETED>    ``(F) Initiatives to protect cancer 
                survivors from the late effects of cancer treatment, by 
                developing targeted interventions to reduce the burden 
                of morbidity borne by cancer survivors.</DELETED>
                <DELETED>    ``(G) Transitions in care for pediatric 
                cancer survivors.</DELETED>
                <DELETED>    ``(H) Training of professionals to provide 
                linguistically and culturally competent follow-up care 
                to pediatric cancer survivors.</DELETED>
                <DELETED>    ``(I) Different models of follow-up 
                care.</DELETED>
                <DELETED>    ``(J) Examining the cost-effectiveness of 
                the different models of follow-up care.''.</DELETED>

<DELETED>SEC. 203. COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR 
              PEDIATRIC CANCER SURVIVORS.</DELETED>

<DELETED>    Part B of title III of the Public Health Service Act (42 
U.S.C. 243 et seq.) is amended by inserting after section 317T the 
following:</DELETED>

<DELETED>``SEC. 317U. STANDARDS FOR COMPREHENSIVE LONG-TERM CARE FOR 
              PEDIATRIC CANCER SURVIVORS THROUGH THE 
              LIFESPAN.</DELETED>

<DELETED>    ``The Secretary may establish a task force to develop and 
test standards, outcomes, and metrics for high-quality childhood cancer 
survivorship care in consultation with a full spectrum of 
representation of experts in late effects of disease and treatment of 
childhood cancers, including--</DELETED>
        <DELETED>    ``(1) oncologists who treat children and 
        adolescents;</DELETED>
        <DELETED>    ``(2) oncologists who treat adults;</DELETED>
        <DELETED>    ``(3) primary care providers engaged in 
        survivorship care;</DELETED>
        <DELETED>    ``(4) survivors of childhood cancer;</DELETED>
        <DELETED>    ``(5) parents of children who have been diagnosed 
        with and treated for cancer and parents of long-term 
        survivors;</DELETED>
        <DELETED>    ``(6) professionals who are engaged in the 
        development of clinical practice guidelines;</DELETED>
        <DELETED>    ``(7) nurses and social workers;</DELETED>
        <DELETED>    ``(8) mental health professionals;</DELETED>
        <DELETED>    ``(9) allied health professionals, including 
        physical therapists and occupational therapists;</DELETED>
        <DELETED>    ``(10) experts in health care quality measurement 
        and improvement; and</DELETED>
        <DELETED>    ``(11) others, as the Secretary determines 
        appropriate.''.</DELETED>

<DELETED>SEC. 204. SURVIVORSHIP DEMONSTRATION PROJECT.</DELETED>

<DELETED>    (a) In General.--Not later than 1 year after the date of 
the enactment of this Act, the Secretary of Health and Human Services 
(referred to in this section as the ``Secretary'') may carry out a 
demonstration project over a 3-year period, designed to improve the 
quality and efficiency of care provided to childhood cancer survivors 
throughout their lifespan, through improved care coordination as 
survivors transitions to adult care.</DELETED>
<DELETED>    (b) Selection of Demonstration Sites.--</DELETED>
        <DELETED>    (1) Maximum number of sites.--The maximum number 
        of sites at which the demonstration project under subsection 
        (a) is carried out may not exceed 10.</DELETED>
        <DELETED>    (2) Diversity of sites.--In selecting entities to 
        participate in the demonstration project, the Secretary may, to 
        the extent practicable, include in such selection--</DELETED>
                <DELETED>    (A) small-, medium-, and large-sized 
                sites; and</DELETED>
                <DELETED>    (B) sites located in different geographic 
                areas.</DELETED>
<DELETED>    (c) Activities Under Demonstration Project.--The 
activities conducted under the demonstration project under subsection 
(a) may, in addition to any other activity specified by the Secretary, 
include activities that seek to develop different models of care 
coordination, including transitions of care, follow-up care, 
monitoring, and other survivorship related programs that utilize a 
multidisciplinary, team based approach to care, including any of the 
following activities:</DELETED>
        <DELETED>    (1) Coordination of care and transitions of care 
        between cancer care providers, primary care physicians, mental 
        health professionals and any other relevant 
        providers.</DELETED>
        <DELETED>    (2) Dissemination of information to, and training 
        of, health care providers about linguistically and culturally 
        competent follow-up care specific to cancer 
        survivors.</DELETED>
        <DELETED>    (3) Development of monitoring programs for cancer 
        survivors and their families.</DELETED>
        <DELETED>    (4) Incorporation of peer support and mentoring 
        programs to improve the quality of life of cancer 
        survivors.</DELETED>
        <DELETED>    (5) Designing systems and models for the effective 
        transfer of treatment information and care summaries from 
        cancer care providers to other health care providers (including 
        risk factors and a care plan).</DELETED>
        <DELETED>    (6) Evaluation of functional status and 
        incorporation of specific functional needs into the care 
        planning process.</DELETED>
        <DELETED>    (7) Dissemination of the information on activities 
        and programs conducted under this section to other health care 
        providers (including primary care physicians) and to cancer 
        survivors and their families, where appropriate.</DELETED>
        <DELETED>    (8) Other items determined by the 
        Secretary.</DELETED>
<DELETED>    (d) Measures.--The Secretary may use the following 
measures to assess the performance of each site:</DELETED>
        <DELETED>    (1) Patient care and patient/family satisfaction 
        measures.</DELETED>
        <DELETED>    (2) Resource utilization measures.</DELETED>
        <DELETED>    (3) Adult survivorship measures, as 
        appropriate.</DELETED>
<DELETED>    (e) GAO Report.--The Comptroller General of the United 
States shall submit a report to Congress evaluating the success of the 
demonstration project. Such report shall include an assessment of the 
impact of the project upon the quality and cost-efficiency of services 
furnished to individuals under this title, including an assessment of 
the satisfaction of such individuals with respect to such services that 
were furnished under such project. Such report shall include 
recommendations regarding the possible expansion of the demonstration 
project.</DELETED>

       <DELETED>Subtitle B--Coverage and Payment of High Quality 
                             Care</DELETED>

<DELETED>SEC. 211. REPORT BY THE COMPTROLLER GENERAL.</DELETED>

<DELETED>    (a) In General.--The Comptroller General of the United 
States shall conduct a review and submit recommendations to Congress on 
existing barriers to obtaining and paying for adequate medical care for 
survivors of childhood cancer.</DELETED>
<DELETED>    (b) Considerations.--In carrying out the review and 
formulating recommendations under subsection (a), the Comptroller 
General shall--</DELETED>
        <DELETED>    (1) identify existing barriers to the availability 
        of complete and coordinated survivorship care for survivors of 
        childhood cancer and to the availability of expert pediatric 
        palliative care, including consideration of--</DELETED>
                <DELETED>    (A) understanding and education among 
                patients, health care providers, regulators, and third-
                party payors;</DELETED>
                <DELETED>    (B) adequacy of payment codes to cover 
                necessary survivorship services;</DELETED>
                <DELETED>    (C) access to necessary medical and other 
                services for such survivors, including the services 
                described in subsection (c); and</DELETED>
                <DELETED>    (D) lack of pediatric palliative care 
                across all stages of illness and hospice services for 
                patients approaching the end of life; and</DELETED>
        <DELETED>    (2) make recommendations to provide improved 
        access and payment plans for childhood cancer survivorship 
        programs and palliative care, including psychosocial services 
        and coverage of such services.</DELETED>
<DELETED>    (c) Services Described.--The services described in this 
subsection are the following:</DELETED>
        <DELETED>    (1) Coordinated multidisciplinary long-term 
        follow-up care with access to appropriate pediatric 
        subspecialists and adult subspecialists with specific expertise 
        in survivorship, including subspecialists with expertise in 
        oncology, radiation oncology, surgery, cardiology, psychiatry 
        or psychology, endocrinology, pulmonology, nephrology, 
        dermatology, gynecology, and urology.</DELETED>
        <DELETED>    (2) Appropriate organ function testing 
        (particularly screening for potential problems at much younger 
        ages than usually indicated in the general population) and 
        treatment, including--</DELETED>
                <DELETED>    (A) neuropsychological testing and mental 
                health services;</DELETED>
                <DELETED>    (B) fertility testing and 
                treatment;</DELETED>
                <DELETED>    (C) evaluation and treatment for endocrine 
                disorders including growth hormone and testosterone 
                replacement;</DELETED>
                <DELETED>    (D) diagnostic imaging to screen for late 
                effects of treatment (including subsequent cancers), 
                such as mammograms and magnetic resonance imaging 
                testing to screen for possible breast cancer;</DELETED>
                <DELETED>    (E) screening for cardiac problems, such 
                as echocardiograms;</DELETED>
                <DELETED>    (F) screening for osteoporosis with bone 
                densitometry, including duel x-ray absorptiometry and 
                monitoring 25-hydroxyvitamin D levels;</DELETED>
                <DELETED>    (G) dental coverage and necessary dental 
                implants;</DELETED>
                <DELETED>    (H) hearing aids and other prosthetic 
                devices; and</DELETED>
                <DELETED>    (I) screening for lung problems, such as 
                pulmonary function testing.</DELETED>

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Childhood Cancer 
Survivorship, Treatment, Access, and Research Act of 2018'' or the 
``Childhood Cancer STAR Act''.
    (b) Table of Contents.--The table of contents for 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.

             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.

    Section 417E of the Public Health Service Act (42 U.S.C. 285a-11) 
is amended--
            (1) in the section heading, by striking ``research and 
        awareness'' and inserting ``research, awareness, and 
        survivorship'';
            (2) by striking subsection (a) and inserting the following:
    ``(a) Children's Cancer Biorepositories.--
            ``(1) Award.--The Secretary, acting through the Director of 
        NIH, may make awards to an entity or entities described in 
        paragraph (4) to build upon existing research efforts to 
        collect biospecimens and clinical and demographic information 
        of children, adolescents, and young adults with selected cancer 
        subtypes (and their recurrences) for which current treatments 
        are least effective, in order to achieve a better understanding 
        of the causes of such cancer subtypes (and their recurrences), 
        and the effects and outcomes of treatments for such cancers.
            ``(2) Use of funds.--Amounts received under an award under 
        paragraph (1) may be used to carry out the following:
                    ``(A) Collect and store high-quality, donated 
                biospecimens and associated clinical and demographic 
                information on children, adolescents, and young adults 
                diagnosed with cancer in the United States, focusing on 
                children, adolescents, and young adults with cancer 
                enrolled in clinical trials for whom current treatments 
                are least effective. Activities under this subparagraph 
                may include storage of biospecimens and associated 
                clinical and demographic data at existing 
                biorepositories supported by the National Cancer 
                Institute.
                    ``(B) Maintain an interoperable, secure, and 
                searchable database on stored biospecimens and 
                associated clinical and demographic data from children, 
                adolescents, and young adults with cancer for the 
                purposes of research by scientists and qualified health 
                care professionals.
                    ``(C) Establish and implement procedures for 
                evaluating applications for access to such biospecimens 
                and clinical and demographic data from researchers and 
                other qualified health care professionals.
                    ``(D) Provide access to biospecimens and clinical 
                and demographic data from children, adolescents, and 
                young adults with cancer to researchers and qualified 
                health care professionals for peer-reviewed research--
                            ``(i) consistent with the procedures 
                        established pursuant to subparagraph (C);
                            ``(ii) only to the extent permitted by 
                        applicable Federal and State law; and
                            ``(iii) in a manner that protects personal 
                        privacy to the extent required by applicable 
                        Federal and State privacy law, at minimum.
            ``(3) No requirement.--No child, adolescent, or young adult 
        with cancer shall be required under this subsection to 
        contribute a specimen to a biorepository or share clinical or 
        demographic data.
            ``(4) Application; considerations.--
                    ``(A) Application.--To be eligible to receive an 
                award under paragraph (1) an entity shall submit an 
                application to the Secretary at such a time, in such 
                manner, and containing such information as the 
                Secretary may reasonably require.
                    ``(B) Considerations.--In evaluating applications 
                submitted under subparagraph (A), the Secretary shall 
                consider the existing infrastructure of the entity that 
                would allow for the timely capture of biospecimens and 
                related clinical and demographic information for 
                children, adolescents, and young adults with cancer for 
                whom current treatments are least effective.
            ``(5) Privacy protections and informed consent.--
                    ``(A) In general.--The Secretary may not make an 
                award under paragraph (1) to an entity unless the 
                Secretary ensures that such entity--
                            ``(i) collects biospecimens and associated 
                        clinical and demographic information only from 
                        participants who have given their informed 
                        consent in accordance with Federal and State 
                        law; and
                            ``(ii) protects personal privacy to the 
                        extent required by applicable Federal and State 
                        law, at minimum.
                    ``(B) Informed consent.--The Secretary shall ensure 
                biospecimens and associated clinical and demographic 
                information are collected with informed consent, as 
                described in subparagraph (A)(i).
            ``(6) Guidelines and oversight.--The Secretary shall 
        develop and disseminate appropriate guidelines for the 
        development and maintenance of the biorepositories supported 
        under this subsection, including appropriate oversight, to 
        facilitate further research on select cancer subtypes (and 
        their recurrences) in children, adolescents, and young adults 
        with such cancers (and their recurrences).
            ``(7) Coordination.--To encourage the greatest possible 
        efficiency and effectiveness of federally supported efforts 
        with respect to the activities described in this subsection, 
        the Secretary shall ensure the appropriate coordination of 
        programs supported under this section with existing federally 
        supported cancer registry programs and the activities under 
        section 399E-1, as appropriate.
            ``(8) Supplement not supplant.--Funds provided under this 
        subsection shall be used to supplement, and not supplant, 
        Federal and non-Federal funds available for carrying out the 
        activities described in this subsection.
            ``(9) Report.--Not later than 4 years after the date of 
        enactment of the Childhood Cancer Survivorship, Treatment, 
        Access, and Research Act of 2018, the Secretary shall submit to 
        Congress a report on--
                    ``(A) the number of biospecimens and corresponding 
                clinical demographic data collected through the 
                biospecimen research efforts supported under paragraph 
                (1);
                    ``(B) the number of biospecimens and corresponding 
                clinical demographic data requested for use by 
                researchers;
                    ``(C) barriers to the collection of biospecimens 
                and corresponding clinical demographic data;
                    ``(D) barriers experienced by researchers or health 
                care professionals in accessing the biospecimens and 
                corresponding clinical demographic data necessary for 
                use in research; and
                    ``(E) recommendations with respect to improving the 
                biospecimen and biorepository research efforts under 
                this subsection.
            ``(10) Definitions.--For purposes of this subsection:
                    ``(A) Award.--The term `award' includes a grant, 
                contract, or cooperative agreement determined by the 
                Secretary.
                    ``(B) Biospecimen.--The term `biospecimen' 
                includes--
                            ``(i) solid tumor tissue or bone marrow;
                            ``(ii) normal or control tissue;
                            ``(iii) blood and plasma;
                            ``(iv) DNA and RNA extractions;
                            ``(v) familial DNA; and
                            ``(vi) any other sample relevant to cancer 
                        research, as required by the Secretary.
                    ``(C) Clinical and demographic information.--The 
                term `clinical and demographic information' includes--
                            ``(i) date of diagnosis;
                            ``(ii) age at diagnosis;
                            ``(iii) the patient's sex, race, ethnicity, 
                        and environmental exposures;
                            ``(iv) extent of disease at enrollment;
                            ``(v) site of metastases;
                            ``(vi) location of primary tumor coded;
                            ``(vii) histologic diagnosis;
                            ``(viii) tumor marker data when available;
                            ``(ix) treatment and outcome data;
                            ``(x) information related to specimen 
                        quality; and
                            ``(xi) any other applicable information 
                        required by the Secretary.''; and
            (3) in subsection (c), by striking ``(42 U.S.C. 202 
        note)''.

SEC. 102. IMPROVING CHILDHOOD CANCER SURVEILLANCE.

    (a) In General.--Section 399E-1 of the Public Health Service Act 
(42 U.S.C. 280e-3a) is amended--
            (1) in subsection (a)--
                    (A) by striking ``shall award a grant'' and 
                inserting ``may make awards to State cancer 
                registries''; and
                    (B) by striking ``track the epidemiology of 
                pediatric cancer into a comprehensive nationwide 
                registry of actual occurrences of pediatric cancer'' 
                and inserting ``collect information to better 
                understand the epidemiology of cancer in children, 
                adolescents, and young adults''; and
                    (C) by striking the second sentence and inserting 
                ``Such registries may be updated to include each 
                occurrence of such cancers within a period of time 
                designated by the Secretary.'';
            (2) by redesignating subsection (b) as subsection (d);
            (3) by inserting after subsection (a) the following:
    ``(b) Activities.--The grants described in subsection (a) may be 
used for--
            ``(1) identifying, recruiting, and training potential 
        sources for reporting childhood, adolescent, and young adult 
        cancer cases;
            ``(2) developing practices to ensure early inclusion of 
        childhood, adolescent, and young adult cancer cases in State 
        cancer registries through the use of electronic reporting;
            ``(3) collecting and submitting deidentified data to the 
        Centers for Disease Control and Prevention for inclusion in a 
        national database that includes information on childhood, 
        adolescent, and young adult cancers; and
            ``(4) improving State cancer registries and the database 
        described in paragraph (3), as appropriate, including to 
        support the early inclusion of childhood, adolescent, and young 
        adult cancer cases.
    ``(c) Coordination.--To encourage the greatest possible efficiency 
and effectiveness of federally supported efforts with respect to the 
activities described in this section, the Secretary shall ensure the 
appropriate coordination of programs supported under this section with 
other federally supported cancer registry programs and the activities 
under section 417E(a), as appropriate.''; and
            (4) in subsection (d), as so redesignated, by striking 
        ``registry established pursuant to subsection (a)'' and 
        inserting ``activities described in this section''.
    (b) Authorization of Appropriations.--Section 417E(d) of the Public 
Health Service Act (42 U.S.C. 285a-11(d)) is amended--
            (1) by striking ``2009 through 2013'' and inserting ``2019 
        through 2023''; and
            (2) by striking the second sentence.

                 Subtitle B--Pediatric Expertise at NIH

SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC ONCOLOGIST ON THE 
              NATIONAL CANCER ADVISORY BOARD.

    Clause (iii) of section 406(h)(2)(A) of the Public Health Service 
Act (42 U.S.C. 284a(h)(2)(A)) is amended--
            (1) by striking ``Board not less than five'' and inserting 
        ``Board--
                    ``(I) not less than 5'';
            (2) by inserting ``and'' after the semicolon; and
            (3) by adding at the end the following:
                    ``(II) not less than one member shall be an 
                individual knowledgeable in pediatric oncology;''.

SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EXPERTISE AT THE 
              NATIONAL CANCER INSTITUTE.

    It is the sense of Congress that the Director of the National 
Cancer Institute should ensure that all applicable study sections, 
committees, advisory groups, and panels at the National Cancer 
Institute include one or more qualified pediatric oncologists, as 
appropriate.

        Subtitle C--NIH Reporting on Childhood Cancer Activities

SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH PROJECTS.

    The Director of the National Institutes of Health shall ensure that 
childhood cancer research projects conducted or supported by the 
National Institutes of Health are included in appropriate reports to 
Congress, which may include the Pediatric Research Initiative report.

TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND 
                           CAREGIVER SUPPORT

SEC. 201. CANCER SURVIVORSHIP PROGRAMS.

    (a) Pilot Programs to Explore Model Systems of Care for Pediatric 
Cancer Survivors.--
            (1) In general.--The Secretary of Health and Human Services 
        (referred to in this section as the ``Secretary'') may make 
        awards to eligible entities to establish pilot programs to 
        develop, study, or evaluate model systems for monitoring and 
        caring for childhood cancer survivors throughout their 
        lifespan, including evaluation of models for transition to 
        adult care and care coordination.
            (2) Awards.--
                    (A) Types of entities.--In making awards under this 
                subsection, the Secretary shall, to the extent 
                practicable, include--
                            (i) small, medium, and large-sized eligible 
                        entities; and
                            (ii) sites located in different geographic 
                        areas, including rural and urban areas.
                    (B) Eligible entities.--In this subsection, the 
                term ``eligible entity'' means--
                            (i) a medical school;
                            (ii) a children's hospital;
                            (iii) a cancer center;
                            (iv) a community-based medical facility; or
                            (v) any other entity with significant 
                        experience and expertise in treating survivors 
                        of childhood cancers.
            (3) Use of funds.--Funds awarded under this subsection may 
        be used--
                    (A) to develop, study, or evaluate one or more 
                models for monitoring and caring for cancer survivors; 
                and
                    (B) in developing, studying, and evaluating such 
                models, to give special emphasis to--
                            (i) design of models of follow-up care, 
                        monitoring, and other survivorship programs 
                        (including peer support and mentoring 
                        programs);
                            (ii) development of models for providing 
                        multidisciplinary care;
                            (iii) dissemination of information to 
                        health care providers about culturally and 
                        linguistically appropriate follow-up care for 
                        cancer survivors and their families, as 
                        appropriate and practicable;
                            (iv) development of psychosocial and 
                        support programs to improve the quality of life 
                        of cancer survivors and their families, which 
                        may include peer support and mentoring 
                        programs;
                            (v) design of systems for the effective 
                        transfer of treatment information and care 
                        summaries from cancer care providers to other 
                        health care providers (including risk factors 
                        and a plan for recommended follow-up care);
                            (vi) dissemination of the information and 
                        programs described in clauses (i) through (v) 
                        to other health care providers (including 
                        primary care physicians and internists) and to 
                        cancer survivors and their families, where 
                        appropriate and in accordance with Federal and 
                        State law; and
                            (vii) development of initiatives that 
                        promote the coordination and effective 
                        transition of care between cancer care 
                        providers, primary care physicians, mental 
                        health professionals, and other health care 
                        professionals, as appropriate, including models 
                        that use a team-based or multi-disciplinary 
                        approach to care.
    (b) Workforce Development for Health Care Providers on Medical and 
Psychosocial Care for Childhood Cancer Survivors.--
            (1) In general.--The Secretary shall, not later than 1 year 
        after the date of enactment of this Act, conduct a review of 
        the activities of the Department of Health and Human Services 
        related to workforce development for health care providers who 
        treat pediatric cancer patients and survivors. Such review 
        shall include--
                    (A) an assessment of the effectiveness of 
                supportive psychosocial care services for pediatric 
                cancer patients and survivors, including pediatric 
                cancer survivorship care patient navigators and peer 
                support programs;
                    (B) identification of existing models relevant to 
                providing medical and psychosocial services to 
                individuals surviving pediatric cancers, and programs 
                related to training for health professionals who 
                provide such services to individuals surviving 
                pediatric cancers; and
                    (C) recommendations for improving the provision of 
                psychosocial care for pediatric cancer survivors and 
                patients.
            (2) Report.--Not later than 2 years after the date of 
        enactment of this Act, the Secretary shall submit to the 
        Committee on Health, Education, Labor, and Pensions of the 
        Senate and Committee on Energy and Commerce of the House of 
        Representatives, a report concerning the findings and 
        recommendations from the review conducted under paragraph (1).

SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CANCER SURVIVORS.

    (a) In General.--Section 417E of the Public Health Service Act (42 
U.S.C. 285a-11), as amended by section 101, is further amended by 
striking subsection (b) and inserting the following:
    ``(b) Improving Care for Pediatric Cancer Survivors.--
            ``(1) Research on pediatric cancer survivorship.--The 
        Director of NIH, in coordination with ongoing research 
        activities, may continue to conduct or support pediatric cancer 
        survivorship research including in any of the following areas:
                    ``(A) Outcomes of pediatric cancer survivors, 
                including within minority or other medically 
                underserved populations and with respect to health 
                disparities of such outcomes.
                    ``(B) Barriers to follow-up care for pediatric 
                cancer survivors, including within minority or other 
                medically underserved populations.
                    ``(C) The impact of relevant factors, which may 
                include familial, socioeconomic, and other 
                environmental factors, on treatment outcomes and 
                survivorship.
                    ``(D) The development of indicators used for long-
                term follow-up and analysis of the late effects of 
                cancer treatment for pediatric cancer survivors.
                    ``(E) The identification of, as applicable--
                            ``(i) risk factors associated with the late 
                        effects of cancer treatment;
                            ``(ii) predictors of adverse neurocognitive 
                        and psychosocial outcomes; and
                            ``(iii) the molecular basis of long-term 
                        complications.
                    ``(F) The development of targeted interventions to 
                reduce the burden of morbidity borne by cancer 
                survivors in order to protect such cancer survivors 
                from the late effects of cancer.
            ``(2) Balanced approach.--In conducting or supporting 
        research under paragraph (1)(A)(i) on pediatric cancer 
        survivors within minority or other medically underserved 
        populations, the Director of NIH shall ensure that such 
        research addresses both the physical and the psychological 
        needs of such survivors, as appropriate.''.

SEC. 203. BEST PRACTICES FOR LONG-TERM FOLLOW-UP SERVICES FOR PEDIATRIC 
              CANCER SURVIVORS.

    The Secretary of Health and Human Services may facilitate the 
identification of best practices for childhood and adolescent cancer 
survivorship care, and, as appropriate, may consult with individuals 
who have expertise in late effects of disease and treatment of 
childhood and adolescent cancers, which may include--
            (1) oncologists, which may include pediatric oncologists;
            (2) primary care providers engaged in survivorship care;
            (3) survivors of childhood and adolescent cancer;
            (4) parents of children and adolescents who have been 
        diagnosed with and treated for cancer and parents of long-term 
        survivors;
            (5) nurses and social workers;
            (6) mental health professionals;
            (7) allied health professionals, including physical 
        therapists and occupational therapists; and
            (8) others, as the Secretary determines appropriate.

SEC. 204. TECHNICAL AMENDMENT.

    (a) In General.--Section 3 of the Hematological Cancer Research 
Investment and Education Act of 2002 (Public Law 107-172; 116 Stat. 
541) is amended by striking ``section 419C'' and inserting ``section 
417C''.
    (b) Effective Date.--The amendment made by subsection (a) shall 
take effect as if included in section 3 of the Hematological Cancer 
Research Investment and Education Act of 2002 (Public Law 107-172; 116 
Stat. 541).
                                                       Calendar No. 342

115th CONGRESS

  2d Session

                                 S. 292

_______________________________________________________________________

                                 A BILL

To maximize discovery, and accelerate development and availability, of 
     promising childhood cancer treatments, and for other purposes.

_______________________________________________________________________

                             March 12, 2018

                       Reported with an amendment