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<dc:title>114 HR 3381 : Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2016</dc:title>
<dc:publisher>U.S. House of Representatives</dc:publisher>
<dc:date></dc:date>
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<dc:language>EN</dc:language>
<dc:rights>Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.</dc:rights>
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<form>
		<distribution-code display="yes">II</distribution-code>
		<congress>114th CONGRESS</congress>
		<session>2d Session</session>
		<legis-num>H. R. 3381</legis-num>
		<current-chamber display="yes">IN THE SENATE OF THE UNITED STATES</current-chamber>
		<action><action-date>December 7, 2016</action-date><action-desc>Received</action-desc></action><legis-type>AN ACT</legis-type>
		<official-title display="yes">To maximize discovery, and accelerate development and availability, of promising childhood cancer
			 treatments, and for other purposes.</official-title>
	</form>
	<legis-body id="H773D2D7B28FB47DDB5C510E4054E5856" style="OLC">
		<section id="H23522E671B0B4C1CBCD0B29CE3225A9F" section-type="section-one"><enum>1.</enum><header>Short title; table of contents</header>
 <subsection id="H96DD9AFD8A7F4CCEA50A308E77AA2ABD"><enum>(a)</enum><header>Short title</header><text display-inline="yes-display-inline">This Act may be cited as the <quote><short-title>Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2016</short-title></quote> or the <quote><short-title>Childhood Cancer STAR Act</short-title></quote>.</text> </subsection><subsection id="H3609F4C9791A4262A348849F95762D45"><enum>(b)</enum><header>Table of contents</header><text>The table of contents for this Act is as follows:</text>
				<toc container-level="legis-body-container" lowest-bolded-level="division-lowest-bolded" lowest-level="section" quoted-block="no-quoted-block" regeneration="yes-regeneration">
					<toc-entry idref="H23522E671B0B4C1CBCD0B29CE3225A9F" level="section">Sec. 1. Short title; table of contents.</toc-entry>
					<toc-entry idref="HC701854CBEDF494CB9CB3490C1405952" level="section">Sec. 2. Findings.</toc-entry>
					<toc-entry idref="HE118B52D28864BAEA00E8C6BC5E2EFDD" level="title">Title I—MAXIMIZING RESEARCH THROUGH DISCOVERY</toc-entry>
					<toc-entry idref="H58CF63374EB742CD9601D0D6ACBB02E9" level="subtitle">Subtitle A—Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act</toc-entry>
					<toc-entry idref="H3E2CEEAB61E548F8A282952E4BE128E5" level="section">Sec. 101. Children’s cancer biorepositories and biospecimen research.</toc-entry>
					<toc-entry idref="H21D3354830784B3099EB6525A599B79B" level="section">Sec. 102. Improving Childhood Cancer Surveillance.</toc-entry>
					<toc-entry idref="H43DB5D9144B644CBBD1BA0206062566F" level="subtitle">Subtitle B—Pediatric Expertise at NIH</toc-entry>
					<toc-entry idref="H8709D16546D54147BE35070BFDFCE404" level="section">Sec. 111. Inclusion of at least one pediatric oncologist on the National Cancer Advisory Board.</toc-entry>
					<toc-entry idref="H2DBC9E8B656D40B391C698A002A63A6F" level="section">Sec. 112. Sense of Congress regarding pediatric expertise at the National Cancer Institute.</toc-entry>
					<toc-entry idref="H46812035918E41C9B34383ED3E6A8BE4" level="subtitle">Subtitle C—NIH Report on Childhood Cancer Activities</toc-entry>
					<toc-entry idref="H1683EC823E384EEDB881CBA65E299045" level="section">Sec. 121. Reporting on childhood cancer research projects.</toc-entry>
					<toc-entry idref="H3412CBA74E2747269E1F5C896CB4306B" level="title">Title II—MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND CAREGIVER SUPPORT</toc-entry>
					<toc-entry idref="H5E6260D69D1D454BB0A4D25DD58068D6" level="subtitle">Subtitle A—Childhood Cancer Survivors’ Quality of Life Act</toc-entry>
					<toc-entry idref="H4B3B65DE5E304F23B6FFFF7EA9FCA9C5" level="section">Sec. 201. Cancer survivorship programs.</toc-entry>
					<toc-entry idref="H8609E67BCA8A4ADEA75D02E6FF7E942F" level="section">Sec. 202. Grants to improve care for pediatric cancer survivors.</toc-entry>
					<toc-entry idref="HD36A7AEA21F94E2ABD326622F82F0D79" level="section">Sec. 203. Comprehensive long-term follow-up services for pediatric cancer survivors.</toc-entry>
					<toc-entry idref="H4FEA985CEBD94D7CBFEB4282B74EB579" level="section">Sec. 204. Survivorship demonstration project.</toc-entry>
					<toc-entry idref="H9462FD1A2D5A41CBA93627E078647A0D" level="subtitle">Subtitle B—Coverage and Payment of High Quality Care</toc-entry>
					<toc-entry idref="H405C64AC8AEF42DAA3C38C00BDD36483" level="section">Sec. 211. Report by the Comptroller General.</toc-entry>
				</toc>
 </subsection></section><section id="HC701854CBEDF494CB9CB3490C1405952"><enum>2.</enum><header>Findings</header><text display-inline="no-display-inline">Congress makes the following findings:</text> <paragraph id="H1B5624CF1A2B497EA6201FC6DDDCF01D"><enum>(1)</enum><text>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.</text>
 </paragraph><paragraph id="H180C58DE12274D29A4DCC8445135E265"><enum>(2)</enum><text>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.</text>
 </paragraph><paragraph id="H65B3D32DB248481F844C8C5652A010BC"><enum>(3)</enum><text>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.</text>
 </paragraph><paragraph id="H51A7C19BAFB141ADB8A9DF7DD85D2145"><enum>(4)</enum><text>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.</text>
 </paragraph><paragraph id="H7E88D73DE6454D4B9F2F9C22EC8E9517"><enum>(5)</enum><text>By 2020, the population of childhood cancers survivors is expected to be 500,000 individuals.</text> </paragraph><paragraph id="H4BF841E11FC64EBC850BA94D8063EC35"><enum>(6)</enum><text>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.</text>
 </paragraph><paragraph id="H1BA8EEC915EB4B7E99D2AD8EAA2B6058"><enum>(7)</enum><text>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.</text>
 </paragraph><paragraph id="H94F79066ECE74F1D841489F43282651A"><enum>(8)</enum><text display-inline="yes-display-inline">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.</text>
 </paragraph><paragraph id="H40CD9765566844CB820E6315E41B2E55"><enum>(9)</enum><text>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.</text>
 </paragraph><paragraph id="HBF17058EC772487FA55123C8C7FAB455"><enum>(10)</enum><text>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.</text>
 </paragraph><paragraph id="H82ADA495DCCC40CAB93EDFC269FBD5A5"><enum>(11)</enum><text>The Institute of Medicine, in its report on cancer survivorship entitled <quote>Childhood Cancer Survivorship: Improving Care and Quality of Life</quote>, states that an organized system of care and a method of care for pediatric cancer survivors is needed.</text>
 </paragraph><paragraph id="HCAB404CC1920466E8F94E5747B0B2326"><enum>(12)</enum><text>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.</text>
 </paragraph><paragraph id="HFB36164CEA474346996800618DFF915D"><enum>(13)</enum><text>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.</text>
 </paragraph><paragraph id="H6F5EF608473F45A6A20755373D8BD80C"><enum>(14)</enum><text display-inline="yes-display-inline">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).</text>
			</paragraph></section><title id="HE118B52D28864BAEA00E8C6BC5E2EFDD"><enum>I</enum><header>MAXIMIZING RESEARCH THROUGH DISCOVERY</header>
			<subtitle id="H58CF63374EB742CD9601D0D6ACBB02E9"><enum>A</enum><header>Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act</header>
 <section id="H3E2CEEAB61E548F8A282952E4BE128E5"><enum>101.</enum><header>Children’s cancer biorepositories and biospecimen research</header><text display-inline="no-display-inline">Section 417E of the Public Health Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/285a-11">42 U.S.C. 285a–11</external-xref>) is amended—</text> <paragraph id="HD06F9824F3294EEA8921B61758AF9BC5"><enum>(1)</enum><text display-inline="yes-display-inline">by striking subsection (a) and inserting the following:</text>
						<quoted-block display-inline="no-display-inline" id="H7F0224D632BB4379BDA0C94E6BE13212" style="OLC">
							<subsection id="H0CAACB8423124A859FF04B94290915B9"><enum>(a)</enum><header>Children's cancer biorepositories</header>
 <paragraph id="HC5BF3512CF204DB781E47E4942309DEE"><enum>(1)</enum><header>Award</header><text display-inline="yes-display-inline">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.</text>
 </paragraph><paragraph id="H5BE1246DDBAC4722A2A8B08A7310BDD8"><enum>(2)</enum><header>Use of funds</header><text>Amounts received under an award under paragraph (1) may be used to carry out the following:</text> <subparagraph id="HED6255BA90A54295A319155B6F660924"><enum>(A)</enum><text display-inline="yes-display-inline">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.</text>
 </subparagraph><subparagraph id="HDC898B4D821143E5B98CADF355196A43"><enum>(B)</enum><text>Make such information publicly available, including the repositories described in subparagraph (A).</text> </subparagraph><subparagraph id="H2372C0824DFC408691F0FF94547B4FA5"><enum>(C)</enum><text>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.</text>
 </subparagraph><subparagraph id="H5BA18B70DD884FF2A2A5D853150C4003"><enum>(D)</enum><text>Establish procedures for evaluating applications for access to such biospecimens and clinical and demographic data from researchers and other qualified health care professionals.</text>
 </subparagraph><subparagraph id="H01C9E7A5DEDD431DA3B8D4BFA31C6FC9"><enum>(E)</enum><text>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.</text>
 </subparagraph></paragraph><paragraph id="HA5E025B08F3443C09FC776A609D8B5F4"><enum>(3)</enum><header>No requirement</header><text>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.</text>
								</paragraph><paragraph id="H8B70BBF306B843F5A26530089B0832DF"><enum>(4)</enum><header>Application; considerations</header>
 <subparagraph id="H2C4E8017FDA7475FBD10F84C446C6E19"><enum>(A)</enum><header>Application</header><text>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.</text>
 </subparagraph><subparagraph id="H6384D1D041BA4CD8A615B50C9B7E673E"><enum>(B)</enum><header>Considerations</header><text>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.</text>
									</subparagraph></paragraph><paragraph id="H31C1F9B723D549FAA0FB9EBAA1D96F17"><enum>(5)</enum><header>Privacy protections; consent</header>
 <subparagraph id="H5B045745E6BF436CA21A0EAA771E29E3"><enum>(A)</enum><header>In general</header><text>The Secretary may not make an award under paragraph (1) to an entity unless the Secretary ensures that such entity—</text>
 <clause id="HB25AFFEA008E4BA48625CDABDE9D1628"><enum>(i)</enum><text>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</text>
 </clause><clause id="HAD03B35111104F5AA15EBFE114574458"><enum>(ii)</enum><text>adheres to strict confidentiality to protect the identity and privacy of patients in accordance with Federal and State law.</text>
 </clause></subparagraph><subparagraph id="H266C7444D9FC4FAE892CFFEDF3AD01A6"><enum>(B)</enum><header>Consent</header><text>The Secretary shall establish an appropriate process for achieving consent from the patient, parent, or legal guardian.</text>
									</subparagraph></paragraph><paragraph id="H520C208263624CEFB7BF94F284E57C0D"><enum>(6)</enum><header>Single point of access; standard data; guidelines and oversight</header>
 <subparagraph id="HCBF107036C354CB48DBFB0ACE2C30340"><enum>(A)</enum><header>Single point of access</header><text>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.</text>
 </subparagraph><subparagraph id="H1BCBCF6C92864D3EB623F87DC438A91C"><enum>(B)</enum><header>Standard data</header><text>The Secretary shall require all recipients of an award under this section 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.</text>
 </subparagraph><subparagraph id="HB8643403CC244CCD8D63E255E6D0EB76"><enum>(C)</enum><header>Guidelines and oversight</header><text>The Secretary shall develop and disseminate appropriate guidelines for the development and maintenance of the biorepositories supported under this section, including appropriate oversight.</text>
 </subparagraph></paragraph><paragraph id="H3188B8DEE4C5465EBBDA2E8E523A5E1F"><enum>(7)</enum><header>Coordination</header><text>The Secretary shall ensure that clinical and demographic information collected in accordance with this section is collected in coordination with the information collected under section 399E–1.</text>
 </paragraph><paragraph id="HF3F04B2DEA444B43A475DCBDBF2E620F"><enum>(8)</enum><header>Prohibition on use of funds</header><text>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.</text>
 </paragraph><paragraph id="H62A8015C263249ACB2977DE35F8B3497"><enum>(9)</enum><header>Report</header><text>Not later than 4 years after the date of enactment of the <short-title>Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2016</short-title>, the Secretary shall submit to Congress a report on—</text> <subparagraph id="H621F653EA8034B9188F907BE6B4D92CD"><enum>(A)</enum><text display-inline="yes-display-inline">the number of biospecimens and corresponding clinical demographic data collected through the biospecimen research efforts supported under paragraph (1);</text>
 </subparagraph><subparagraph id="HF5D6D6091CB94494A8A278ACC03C1646"><enum>(B)</enum><text>the number of biospecimens and corresponding clinical demographic data requested for use by researchers;</text>
 </subparagraph><subparagraph id="H88A34272B30C419E92A3D033C03F7785"><enum>(C)</enum><text>any barriers to the collection of biospecimens and corresponding clinical demographic data;</text> </subparagraph><subparagraph id="H1D56C49CC3BF4026804E1E81B9CF82E8"><enum>(D)</enum><text>any barriers experienced by researchers or health care professionals in accessing the biospecimens and corresponding clinical demographic data necessary for use in research; and</text>
 </subparagraph><subparagraph id="HBCBB4C125FB64AB18D5CD3FD4E030067"><enum>(E)</enum><text display-inline="yes-display-inline">any recommendations with respect to improving the biospecimen and biorepository research efforts under this subsection.</text>
 </subparagraph></paragraph><paragraph id="HE409F526B7F449018F5B58FD804AFC5C"><enum>(10)</enum><header>Definitions</header><text>For purposes of this subsection:</text> <subparagraph display-inline="no-display-inline" id="H2D758CD2C5804C91A82154846DE1DE74"><enum>(A)</enum><header>Award</header><text display-inline="yes-display-inline">The term <term>award</term> includes a grant, contract, cooperative agreement, or other transaction determined by the Secretary.</text>
 </subparagraph><subparagraph id="H8CBCDF002A824230938FC2785ADA9731"><enum>(B)</enum><header>Biospecimen</header><text>The term <term>biospecimen</term> includes—</text> <clause id="HCE316B262B444155BD98F9151314DFAD"><enum>(i)</enum><text>solid tumor tissue or bone marrow;</text>
 </clause><clause id="HA8E53259D7614FF8AC4EF2E8913C84D7"><enum>(ii)</enum><text>normal or control tissue;</text> </clause><clause id="H33B55190864C493D8ADF46BDAC64473A"><enum>(iii)</enum><text>blood and plasma;</text>
 </clause><clause id="H36D08CB598A046E59FA56DB8BAA21F1B"><enum>(iv)</enum><text>DNA and RNA extractions;</text> </clause><clause id="H94A5B5721B4F470CBCB27852A9DB73E7"><enum>(v)</enum><text>familial DNA; and</text>
 </clause><clause id="H2440CC3FF0FB48B79ADAF04C4CACB60D"><enum>(vi)</enum><text>any other sample required by the Secretary.</text> </clause></subparagraph><subparagraph id="HB27B5531D15B481DB6D6E057FC26028C"><enum>(C)</enum><header>Clinical and demographic information</header><text>The term <term>clinical and demographic information</term> includes—</text>
 <clause id="HD7A2028CA4F74F72B7165003018FD1E1"><enum>(i)</enum><text>date of diagnosis;</text> </clause><clause id="HB595F5DF7DA649439E998375B5F3FCBC"><enum>(ii)</enum><text>age at diagnosis;</text>
 </clause><clause id="H587F88F7E8C047C99223EC93A61E1DDD"><enum>(iii)</enum><text display-inline="yes-display-inline">the patient’s gender, race, ethnicity, and environmental exposures;</text> </clause><clause id="H4639E9E61277432DA78CAB1DC0C2C955"><enum>(iv)</enum><text>extent of disease at enrollment;</text>
 </clause><clause id="H0514729DBA244D9CA9D844BF241D66C7"><enum>(v)</enum><text>site of metastases;</text> </clause><clause id="HB63F114378BE4442B3D3FEC51E500E70"><enum>(vi)</enum><text>location of primary tumor coded;</text>
 </clause><clause id="H208ECAA8CEBA4E679C8386EBF9F5F503"><enum>(vii)</enum><text>histologic diagnosis;</text> </clause><clause id="H97382DF5F6CF4DD6A18CA0AFBFAD1F31"><enum>(viii)</enum><text>tumor marker data when available;</text>
 </clause><clause id="H8D7132373C05407A9708447D607F1394"><enum>(ix)</enum><text>treatment and outcome data;</text> </clause><clause id="H234C34E9CB8B4B42BCDD82394DCDDE9A"><enum>(x)</enum><text>information related to specimen quality; and</text>
 </clause><clause id="H98FC1965719C4096A6880462113BA793"><enum>(xi)</enum><text>any other information required by the Secretary.</text></clause></subparagraph></paragraph></subsection><after-quoted-block>; and</after-quoted-block></quoted-block> </paragraph><paragraph id="HAFF77A52CC9B45CDA5616C9E471779E2"><enum>(2)</enum><text>in subsection (d)—</text>
 <subparagraph id="H9B6F11BA0A944FF9909300BBCAF9A5F5"><enum>(A)</enum><text>by striking <quote>and section 399E–1</quote> and inserting <quote>and sections 317U, 399E–1, 417H, and 417H–1</quote>;</text> </subparagraph><subparagraph id="HA1BEF1B3447447589EF39DE058A1E545"><enum>(B)</enum><text>by striking <quote>2009 through 2013</quote> and inserting <quote>2017 through 2021</quote>; and</text>
 </subparagraph><subparagraph id="H7438B59A890B461EBAB432543C62112D"><enum>(C)</enum><text>by striking <quote>such purpose</quote> and inserting <quote>such purposes</quote>.</text> </subparagraph></paragraph></section><section id="H21D3354830784B3099EB6525A599B79B"><enum>102.</enum><header>Improving Childhood Cancer Surveillance</header><text display-inline="no-display-inline">Section 399E–1 of the Public Health Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/280e-3a">42 U.S.C. 280e–3a</external-xref>) is amended—</text>
 <paragraph id="H99D2AD9E63964F1D94593C17A4245075"><enum>(1)</enum><text>by redesignating subsection (b) as subsection (d); and</text> </paragraph><paragraph id="H8477A3DA896B486396EF0272BEE74EA8"><enum>(2)</enum><text>by striking subsection (a) and inserting the following:</text>
						<quoted-block display-inline="no-display-inline" id="H37745AE4468E4D8E9524A4D3D29E69C4" style="OLC">
 <subsection id="HB6D6F2EA34E24E36B1AF91026C742CC1"><enum>(a)</enum><header>In general</header><text display-inline="yes-display-inline">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.</text>
 </subsection><subsection id="H7AABCF7A3031495A8F0C14F5FAD069B5"><enum>(b)</enum><header>Activities</header><text>The grants described in subsection (a) may be used for—</text> <paragraph id="H6A24E46ACF49472B9454A950E230D308"><enum>(1)</enum><text>identifying, recruiting, and training all potential sources for reporting childhood, adolescent, and young adult cancer cases;</text>
 </paragraph><paragraph id="H49AD8F67F9A94FE0AB7FDEA3742C1331"><enum>(2)</enum><text>developing procedures to implement early inclusion of childhood, adolescent, and young adult cancer cases on State cancer registries through the use of electronic reporting;</text>
 </paragraph><paragraph id="H8C7828EA3E34492F9438C1C0FBE7B4CD"><enum>(3)</enum><text>purchasing infrastructure to support the early inclusion of childhood, adolescent, and young adult cancer cases on such registries;</text>
 </paragraph><paragraph id="H252A5A37EF564258944EAB857D7B60E9"><enum>(4)</enum><text>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</text>
 </paragraph><paragraph id="H68D59A21F43F4E85A1DC67EA3DED242C"><enum>(5)</enum><text>tracking the late effects of childhood, adolescent, and young adult cancers.</text> </paragraph></subsection><subsection id="H665318A2D3F64DEA87AD9C9EAD217EBA"><enum>(c)</enum><header>Coordination</header><text display-inline="yes-display-inline">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.</text></subsection><after-quoted-block>.</after-quoted-block></quoted-block>
					</paragraph></section></subtitle><subtitle id="H43DB5D9144B644CBBD1BA0206062566F"><enum>B</enum><header>Pediatric Expertise at NIH</header>
 <section id="H8709D16546D54147BE35070BFDFCE404"><enum>111.</enum><header>Inclusion of at least one pediatric oncologist on the National Cancer Advisory Board</header><text display-inline="no-display-inline">Clause (iii) of section 406(h)(2)(A) of the Public Health and Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/284a">42 U.S.C. 284a(h)(2)(A)</external-xref>) is amended to read as follows:</text>
					<quoted-block id="H783B575739A443CAAED8728D90F413A2" style="OLC">
 <clause id="H726EFBD59D9D46FB920177C638E941DF" indent="up2"><enum>(iii)</enum><text>of the members appointed to the Board—</text> <subclause id="H734C5AF6D09E40BFA9BE9753D1072933"><enum>(I)</enum><text>not less than five members shall be individuals knowledgeable in environmental carcinogenesis (including carcinogenesis involving occupational and dietary factors); and</text>
 </subclause><subclause id="HE72BD5E5DB3F402CA1E61D647D0F50AE"><enum>(II)</enum><text>not less than one member shall be an individual knowledgeable in pediatric oncology;</text></subclause></clause><after-quoted-block>.</after-quoted-block></quoted-block> </section><section id="H2DBC9E8B656D40B391C698A002A63A6F"><enum>112.</enum><header>Sense of Congress regarding pediatric expertise at the National Cancer Institute</header><text display-inline="no-display-inline">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.</text>
				</section></subtitle><subtitle id="H46812035918E41C9B34383ED3E6A8BE4" style="OLC"><enum>C</enum><header>NIH Report on Childhood Cancer Activities</header>
 <section id="H1683EC823E384EEDB881CBA65E299045"><enum>121.</enum><header>Reporting on childhood cancer research projects</header><text display-inline="no-display-inline">Section 409D(c)(3) of the Public Health Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/284h">42 U.S.C. 284h(c)(3)</external-xref>) is amended by—</text> <paragraph id="HD9F80307B0D648C59D1F9BBE07ECFAC5"><enum>(1)</enum><text display-inline="yes-display-inline">striking <quote>public on</quote> and inserting “public on—</text>
						<quoted-block display-inline="no-display-inline" id="H3529F67F30804728B6D878151DF4F154" style="OLC">
							<subparagraph id="H46EDAFC3564C4E6DA1508995040284A7"><enum>(A)</enum></subparagraph><after-quoted-block>; </after-quoted-block></quoted-block>
 </paragraph><paragraph id="HD3BBDE9BA495472286F848EBA05072C3"><enum>(2)</enum><text>striking the period at the end and inserting <quote>; and</quote>; and</text> </paragraph><paragraph id="H93AC988B51B941D29589095B41E0F9A7"><enum>(3)</enum><text>inserting at the end the following:</text>
						<quoted-block display-inline="no-display-inline" id="H614DEE83FEA74874A365C306AC33C1C5" style="OLC">
 <subparagraph id="H094CD30347DC496D8A7021C593AB3F92"><enum>(B)</enum><text display-inline="yes-display-inline">childhood cancer research projects conducted or supported by the National Institutes of Health.</text></subparagraph><after-quoted-block>.</after-quoted-block></quoted-block> </paragraph></section></subtitle></title><title id="H3412CBA74E2747269E1F5C896CB4306B"><enum>II</enum><header>MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND CAREGIVER SUPPORT</header> <subtitle id="H5E6260D69D1D454BB0A4D25DD58068D6"><enum>A</enum><header>Childhood Cancer Survivors’ Quality of Life Act</header> <section id="H4B3B65DE5E304F23B6FFFF7EA9FCA9C5"><enum>201.</enum><header>Cancer survivorship programs</header> <subsection id="H7C0C643B6E92429F9CEF9CA1736F2D26"><enum>(a)</enum><header>Cancer survivorship programs</header><text>The Public Health Service Act is amended by inserting after section 399N of such Act (<external-xref legal-doc="usc" parsable-cite="usc/42/280g-2">42 U.S.C. 280g–2</external-xref>) the following:</text>
						<quoted-block id="H329D9D7F114E45E4A0C2E466ED6C0712" style="OLC">
							<section id="HA779216C9860422BA12F1F2BB11FD21B"><enum>399N–1.</enum><header>Pilot programs to explore model systems of care for pediatric cancer survivors</header>
 <subsection id="H9536B813D0AF4B95A5DB57C518C5D443"><enum>(a)</enum><header>In general</header><text display-inline="yes-display-inline">Not later than 1 year after the date of enactment of this section, 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.</text>
 </subsection><subsection id="HCF6C278F17FA4561B5F329987A784337"><enum>(b)</enum><header>Eligible entities</header><text>In this section, the term <term>eligible entity</term> means—</text> <paragraph id="HFE524578494D4A3F807F47708ED88264"><enum>(1)</enum><text>a medical school;</text>
 </paragraph><paragraph id="HE26C9AABDFE74BBCA081F7C2CB8622C2"><enum>(2)</enum><text>a children’s hospital;</text> </paragraph><paragraph id="H2896DC4059EB45DBAC93EF7A90C6F2B6"><enum>(3)</enum><text>a cancer center;</text>
 </paragraph><paragraph id="H2B3E355AFEF84EDBAC87B44C940B283B"><enum>(4)</enum><text>a community-based medical facility; or</text> </paragraph><paragraph id="H5EC21E195D3940FA9AAC5CDCAE85EE74"><enum>(5)</enum><text>any other entity with significant experience and expertise in treating survivors of childhood cancers.</text>
 </paragraph></subsection><subsection id="H93F424AB25A344C99CABA7EA4EA4700D"><enum>(c)</enum><header>Use of funds</header><text display-inline="yes-display-inline">The Secretary may make an award under this section to an eligible entity only if the entity agrees—</text> <paragraph id="HC059669517EF43E8B21AC2EC99070F69"><enum>(1)</enum><text>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</text>
 </paragraph><paragraph id="H76019186541947629430B4575BC2FF24"><enum>(2)</enum><text>in developing, studying, and evaluating such systems, to give special emphasis to the following:</text> <subparagraph id="H130EEAFDDDF94FA9BB141E02A214AFCF"><enum>(A)</enum><text>Design of protocols for different models of follow-up care, monitoring, and other survivorship programs (including peer support and mentoring programs).</text>
 </subparagraph><subparagraph id="H444E6BE6066F41A09B87374B257F8BEB"><enum>(B)</enum><text>Development of various models for providing multidisciplinary care.</text> </subparagraph><subparagraph id="H1B082B58232B4B0C913E31F849736457"><enum>(C)</enum><text>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.</text>
 </subparagraph><subparagraph id="H408CE8C461A349CEB8FCCDE78F7B7EC7"><enum>(D)</enum><text display-inline="yes-display-inline">Development of psychosocial interventions and support programs to improve the quality of life of cancer survivors and their families.</text>
 </subparagraph><subparagraph id="H86DD67938363407397DB518B5E66A311"><enum>(E)</enum><text>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).</text>
 </subparagraph><subparagraph id="HEEA9068657774D639D35F9BA3A778B76"><enum>(F)</enum><text>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.</text>
 </subparagraph><subparagraph id="H8DC1ED94B2014D80A329D6C4799C462D"><enum>(G)</enum><text>Development of initiatives that promote the coordination and effective transition of care between cancer care providers, primary care physicians, and mental health professionals.</text>
										</subparagraph></paragraph></subsection></section><section id="H0590BB95036B44E788D8CD0F658D8EAD"><enum>399N–2.</enum><header>Workforce development collaborative on medical and psychosocial care for childhood cancer survivors</header>
 <subsection id="H92E341E526FF45F485E608445DA81F99"><enum>(a)</enum><header>In general</header><text>The Secretary shall, not later than 1 year after the date of enactment of this Act, convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors (referred to in this paragraph as the <term>Collaborative</term>). The Collaborative shall be a cross-specialty, multidisciplinary group composed of educators, consumer and family advocates, and providers of psychosocial and biomedical health services.</text>
 </subsection><subsection id="H1AD78CD7E7964C1FA3288238306082ED"><enum>(b)</enum><header>Goals and reports</header><text>The Collaborative shall submit to the Secretary a report establishing a plan to meet the following objectives for medical and psychosocial care workforce development:</text>
 <paragraph id="H0F94E6E5EC994DBE847A6DDAA9395F93"><enum>(1)</enum><text>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.</text>
 </paragraph><paragraph id="H628CA53D6BB24C69A8EDE9D495CBB4BB"><enum>(2)</enum><text>Adapting curricula for continuing education of the existing workforce using efficient workplace-based learning approaches.</text>
 </paragraph><paragraph id="HBA2A1409D59E4EC3A6155DEAE5EDA263"><enum>(3)</enum><text>Developing the skills of faculty and other trainers in teaching psychosocial health care using evidence-based teaching strategies.</text>
 </paragraph><paragraph id="H19350C53EC0C459783DACCD0AB54971F"><enum>(4)</enum><text>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.</text>
 </paragraph><paragraph id="HCF8E8FF29BCD46A28A44DF6B35EA7322"><enum>(5)</enum><text>Evaluating the effectiveness of patient navigators in pediatric cancer survivorship care.</text> </paragraph><paragraph id="HABC89810B0434F87AB098E5EDC7B2830"><enum>(6)</enum><text>Evaluating the effectiveness of peer support programs in the psychosocial care of pediatric cancer patients and survivors.</text></paragraph></subsection></section><after-quoted-block>.</after-quoted-block></quoted-block>
					</subsection><subsection commented="no" id="HE1D6CF6DAE21420ABD72205692D5BF10"><enum>(b)</enum><header>Technical amendment</header>
 <paragraph commented="no" id="H3EA4794C559143FE887DC0CA9C725796"><enum>(1)</enum><header>In general</header><text>Section 3 of the Hematological Cancer Research Investment and Education Act of 2002 (<external-xref legal-doc="public-law" parsable-cite="pl/107/172">Public Law 107–172</external-xref>; 116 Stat. 541) is amended by striking <quote>section 419C</quote> and inserting <quote>section 417C</quote>.</text>
 </paragraph><paragraph commented="no" id="HB665D9DFD55545AC96F0364F7EC43E44"><enum>(2)</enum><header>Effective date</header><text>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 (<external-xref legal-doc="public-law" parsable-cite="pl/107/172">Public Law 107–172</external-xref>; 116 Stat. 541).</text>
						</paragraph></subsection></section><section commented="no" id="H8609E67BCA8A4ADEA75D02E6FF7E942F"><enum>202.</enum><header>Grants to improve care for pediatric cancer survivors</header>
 <subsection id="H85EDD15C9C2645399EA47530F99640FC"><enum>(a)</enum><header>In general</header><text display-inline="yes-display-inline">Section 417E of the Public Health Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/285a-11">42 U.S.C. 285a–11</external-xref>), as amended by section 101, is further amended—</text>
 <paragraph commented="no" id="H0C29D63284F0449B907048DA4559A4AA"><enum>(1)</enum><text>in the section heading, by striking <quote><header-in-text level="section" style="OLC">research and awareness</header-in-text></quote> and inserting <quote><header-in-text level="section" style="OLC">research, awareness, and survivorship</header-in-text></quote>; and</text> </paragraph><paragraph commented="no" id="H7C6212EBC6CD4A83B2FA3403FDF62020"><enum>(2)</enum><text>by striking subsection (b) and inserting the following:</text>
							<quoted-block display-inline="no-display-inline" id="H41C747EB2C27475DBE4288BF93615C48" style="OLC">
								<subsection id="HB8ED5AD7A6ED498AAD8CAA8118980F7A"><enum>(b)</enum><header>Improving care for pediatric cancer survivors</header>
									<paragraph id="H2D99CDD07D6A4940991B6A0492782020"><enum>(1)</enum><header>Research on causes of health disparities in pediatric cancer survivorship</header>
 <subparagraph id="H068F43588C174A658B4F02E7296BC7D7"><enum>(A)</enum><header>Research awards</header><text display-inline="yes-display-inline">The Director of NIH, in coordination with ongoing research activities, may conduct or support pediatric cancer survivorship research including any of the following areas:</text>
 <clause id="H53F8AD4E37B0449CAC44120B9A8EF425"><enum>(i)</enum><text>Needs and outcomes of pediatric cancer survivors within minority or other medically underserved populations.</text>
 </clause><clause id="H6F7E9D75B8C04897BFCD1E764E053CCF"><enum>(ii)</enum><text>Health disparities in pediatric cancer survivorship outcomes within minority or other medically underserved populations.</text>
 </clause><clause id="H5B7D2AE2864E4444B44A938598387037"><enum>(iii)</enum><text>Barriers that pediatric cancer survivors within minority or other medically underserved populations face in receiving follow-up care.</text>
 </clause><clause id="HC30EEDA25F0547149ED7588CC4F59C84"><enum>(iv)</enum><text>Familial, socioeconomic, and other environmental factors and the impact of such factors on treatment outcomes and survivorship.</text>
 </clause></subparagraph><subparagraph id="HC240920A84E34AEDB85305A210E437AD"><enum>(B)</enum><header>Balanced approach</header><text>In 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.</text>
 </subparagraph></paragraph><paragraph id="H724640445B2C4B29AEC7DECFB6E70D00"><enum>(2)</enum><header>Research on late effects and follow-up care for pediatric cancer survivors</header><text display-inline="yes-display-inline">The Director of NIH, in coordination with ongoing research activities, may conduct or support research on follow-up care for pediatric cancer survivors, including any of the following areas:</text>
 <subparagraph id="H9349F24D217F4A51B591237A3A6A63E1"><enum>(A)</enum><text>The development of indicators used for long-term patient tracking and analysis of the late effects of cancer treatment for pediatric cancer survivors.</text>
 </subparagraph><subparagraph id="HAE65CA822C7140FDBBAC75866157B10D"><enum>(B)</enum><text>The identification of risk factors associated with the late effects of cancer treatment.</text> </subparagraph><subparagraph id="HB5C815F350524F38A9A750C8174E6711"><enum>(C)</enum><text display-inline="yes-display-inline">The identification of predictors of adverse neurocognitive and psychosocial outcomes.</text>
 </subparagraph><subparagraph id="H110E55624ADA4265BD10CDC44B224EEF"><enum>(D)</enum><text>The identification of the molecular underpinnings of long-term complications.</text> </subparagraph><subparagraph id="H25975D4D62D245828B4506887800AC3C"><enum>(E)</enum><text>The development of risk prediction models to identify those at highest risk of long-term complications.</text>
 </subparagraph><subparagraph id="H40B71372A19648C2A6D99A1A6D6BD847"><enum>(F)</enum><text>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.</text>
 </subparagraph><subparagraph id="HADBB62FF6B874C3086F5BC5DDDE07077"><enum>(G)</enum><text>Transitions in care for pediatric cancer survivors.</text> </subparagraph><subparagraph id="H5C5AA19FF35F4E91937197635AFA1C4D"><enum>(H)</enum><text>Training of professionals to provide linguistically and culturally competent follow-up care to pediatric cancer survivors.</text>
 </subparagraph><subparagraph id="H0DBF61AE200A4FCB8CD822099B50BA7C"><enum>(I)</enum><text>Different models of follow-up care.</text> </subparagraph><subparagraph id="H3DF56AC19D6742B0A0F728D25E6ED4D4"><enum>(J)</enum><text>Examining the cost-effectiveness of the different models of follow-up care.</text></subparagraph></paragraph></subsection><after-quoted-block>.</after-quoted-block></quoted-block>
 </paragraph></subsection></section><section id="HD36A7AEA21F94E2ABD326622F82F0D79"><enum>203.</enum><header>Comprehensive long-term follow-up services for pediatric cancer survivors</header><text display-inline="no-display-inline">Part B of title III of the Public Health Service Act (<external-xref legal-doc="usc" parsable-cite="usc/42/243">42 U.S.C. 243 et seq.</external-xref>) is amended by inserting after section 317T the following:</text>
					<quoted-block id="HEF8E15AD97A44C578CEEBB14D33C23C3" style="OLC">
 <section id="HDD6E4F24DE834CA6ACDCB2231734900E"><enum>317U.</enum><header>Standards for comprehensive long-term care for pediatric cancer survivors through the lifespan</header><text display-inline="no-display-inline">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—</text>
 <paragraph id="H26CE97268CBD4B68B342E4F4EEFDC963"><enum>(1)</enum><text>oncologists who treat children and adolescents;</text> </paragraph><paragraph id="HA541F8CBCABD4C85A0011E0E0EEF603D"><enum>(2)</enum><text>oncologists who treat adults;</text>
 </paragraph><paragraph id="HDBD611766EFE48E7981662BFE7532396"><enum>(3)</enum><text>primary care providers engaged in survivorship care;</text> </paragraph><paragraph id="H238C7FD9ACAC494592482E260D1EEEA9"><enum>(4)</enum><text>survivors of childhood cancer;</text>
 </paragraph><paragraph id="H266CB21C1C3A486487B6EEFD03BCD35E"><enum>(5)</enum><text display-inline="yes-display-inline">parents of children who have been diagnosed with and treated for cancer and parents of long-term survivors;</text>
 </paragraph><paragraph id="HAEA7396D691044B79652457CCAC22593"><enum>(6)</enum><text>professionals who are engaged in the development of clinical practice guidelines;</text> </paragraph><paragraph id="HF615DB651D024F14A3A07B7BE346197D"><enum>(7)</enum><text>nurses and social workers;</text>
 </paragraph><paragraph id="HA1747C71B3B14DD58DAC48C93D7F1576"><enum>(8)</enum><text>mental health professionals;</text> </paragraph><paragraph id="H18A34A19A53B4910864C8A2C0D70AF38"><enum>(9)</enum><text>allied health professionals, including physical therapists and occupational therapists;</text>
 </paragraph><paragraph id="H4F3D4FB3051448D9BC3CE9D9B691862D"><enum>(10)</enum><text>experts in health care quality measurement and improvement; and</text> </paragraph><paragraph id="H209B3B3718024E3F994D3D251A1066FF"><enum>(11)</enum><text>others, as the Secretary determines appropriate.</text></paragraph></section><after-quoted-block>.</after-quoted-block></quoted-block>
				</section><section id="H4FEA985CEBD94D7CBFEB4282B74EB579"><enum>204.</enum><header>Survivorship demonstration project</header>
 <subsection id="H2552B94DAB444DCC9A93DDF658585368"><enum>(a)</enum><header>In general</header><text>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 <quote>Secretary</quote>) 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.</text>
					</subsection><subsection id="HA9D94A3BF9BC468782811E81E95F8C49"><enum>(b)</enum><header>Selection of demonstration sites</header>
 <paragraph id="HA30137789E384A97AEA12CCEDBA166CE"><enum>(1)</enum><header>Maximum number of sites</header><text display-inline="yes-display-inline">The maximum number of sites at which the demonstration project under subsection (a) is carried out may not exceed 10.</text>
 </paragraph><paragraph id="H1D6A616781AB4FAE9754097A6DA4E66B"><enum>(2)</enum><header>Diversity of sites</header><text display-inline="yes-display-inline">In selecting entities to participate in the demonstration project, the Secretary may, to the extent practicable, include in such selection—</text>
 <subparagraph id="H72C2B4E67C904061B9865DD9F9211E16"><enum>(A)</enum><text>small-, medium-, and large-sized sites; and</text> </subparagraph><subparagraph id="H598D4E8D07484E889499B09E5ECAACBE"><enum>(B)</enum><text>sites located in different geographic areas.</text>
 </subparagraph></paragraph></subsection><subsection id="H4B01CFF05F504507A1AA7A1D9A363954"><enum>(c)</enum><header>Activities under demonstration project</header><text>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:</text>
 <paragraph id="HBB7CD5C9600E407D9D21A57BE6611D06"><enum>(1)</enum><text>Coordination of care and transitions of care between cancer care providers, primary care physicians, mental health professionals and any other relevant providers.</text>
 </paragraph><paragraph id="HA8221DBA99424048B2C039588F6B7857"><enum>(2)</enum><text>Dissemination of information to, and training of, health care providers about linguistically and culturally competent follow-up care specific to cancer survivors.</text>
 </paragraph><paragraph id="H32610C51DCA04D1DB87BFFC2DC33857D"><enum>(3)</enum><text>Development of monitoring programs for cancer survivors and their families.</text> </paragraph><paragraph id="HF0A91F26B99C433A9AD98BC7EF1244A9"><enum>(4)</enum><text>Incorporation of peer support and mentoring programs to improve the quality of life of cancer survivors.</text>
 </paragraph><paragraph id="H9B4A201EBAE64460A02AB805AB4B3086"><enum>(5)</enum><text>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).</text>
 </paragraph><paragraph id="HAACAE41CFDAC473B9B35A54BDFDA1FB2"><enum>(6)</enum><text>Evaluation of functional status and incorporation of specific functional needs into the care planning process.</text>
 </paragraph><paragraph id="H5AFD6FD0CFA747EE9D24A81580FBC1AF"><enum>(7)</enum><text>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.</text>
 </paragraph><paragraph id="H101CC5D109754CA2859A7C90870E2067"><enum>(8)</enum><text>Other items determined by the Secretary.</text> </paragraph></subsection><subsection id="H24B1DC94DD104042998FAB43C0779A83"><enum>(d)</enum><header>Measures</header><text>The Secretary may use the following measures to assess the performance of each site:</text>
 <paragraph id="H98FC2C0355F547EA8F54F0EF99820087"><enum>(1)</enum><text display-inline="yes-display-inline">Patient care and patient/family satisfaction measures.</text> </paragraph><paragraph id="H97273F21C9E844A2B8B60B46B2DD3DBF"><enum>(2)</enum><text>Resource utilization measures.</text>
 </paragraph><paragraph id="H46204077939848ABB6C33FA9F8B5C904"><enum>(3)</enum><text>Adult survivorship measures, as appropriate.</text> </paragraph></subsection><subsection id="HCD3629A38DFE49C3882E9BFEFB58DBBD"><enum>(e)</enum><header>GAO Report</header><text>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.</text>
					</subsection></section></subtitle><subtitle id="H9462FD1A2D5A41CBA93627E078647A0D"><enum>B</enum><header>Coverage and Payment of High Quality Care</header>
				<section id="H405C64AC8AEF42DAA3C38C00BDD36483"><enum>211.</enum><header>Report by the Comptroller General</header>
 <subsection id="HB9904AE3B7ED4BC4B584FED8E7C1CAF4"><enum>(a)</enum><header>In general</header><text>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.</text>
 </subsection><subsection id="H8D69DB6A655B45CA81DD49CD233EFB86"><enum>(b)</enum><header>Considerations</header><text>In carrying out the review and formulating recommendations under subsection (a), the Comptroller General shall—</text>
 <paragraph id="HFB0F40082F4148A6843516378956CC7F"><enum>(1)</enum><text>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—</text>
 <subparagraph id="HC15EBB8A72BE4C489F84D75FCBF3D5E1"><enum>(A)</enum><text>understanding and education among patients, health care providers, regulators, and third-party payors;</text>
 </subparagraph><subparagraph id="H613D89A4FFFC440DA522C088E879BFAD"><enum>(B)</enum><text>adequacy of payment codes to cover necessary survivorship services;</text> </subparagraph><subparagraph id="H4B4CF3D996164BAF8B05FFB2C6BDB7A9"><enum>(C)</enum><text>access to necessary medical and other services for such survivors, including the services described in subsection (c); and</text>
 </subparagraph><subparagraph id="H971BFF5DAC7849BE9051C0107E2C4248"><enum>(D)</enum><text display-inline="yes-display-inline">lack of pediatric palliative care across all stages of illness and hospice services for patients approaching the end of life; and</text>
 </subparagraph></paragraph><paragraph id="H8F4EC0A4F12F4CAAB33EBB6920621071"><enum>(2)</enum><text>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.</text>
 </paragraph></subsection><subsection id="H22299B165C154E2C9FEB90AD05CC7678"><enum>(c)</enum><header>Services described</header><text>The services described in this subsection are the following:</text> <paragraph id="HE3F7E0D7452640E28C28ACFC5F7BCCD9"><enum>(1)</enum><text>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.</text>
 </paragraph><paragraph id="H0280D29B0F734BC7A2399C129D028016"><enum>(2)</enum><text>Appropriate organ function testing (particularly screening for potential problems at much younger ages than usually indicated in the general population) and treatment, including—</text>
 <subparagraph id="HE5B238016E544C189F5B5262826291D9"><enum>(A)</enum><text>neuropsychological testing and mental health services;</text> </subparagraph><subparagraph id="HFCC3134B413D439B9DB7D23E48589D26"><enum>(B)</enum><text>fertility testing and treatment;</text>
 </subparagraph><subparagraph id="H111C344ED29F47F7B3A8F960EDBA3E8D"><enum>(C)</enum><text>evaluation and treatment for endocrine disorders including growth hormone and testosterone replacement;</text>
 </subparagraph><subparagraph id="HFC244F3C95DC41F9BACF7526F2597259"><enum>(D)</enum><text display-inline="yes-display-inline">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;</text>
 </subparagraph><subparagraph id="H5086F8F20F284A31BC37425C2FE42292"><enum>(E)</enum><text>screening for cardiac problems, such as echocardiograms;</text> </subparagraph><subparagraph display-inline="no-display-inline" id="H92C00E60BE1F4996BA80D1483A0FB688"><enum>(F)</enum><text display-inline="yes-display-inline">screening for osteoporosis with bone densitometry, including duel x-ray absorptiometry and monitoring 25 hydroxyvitamin D levels;</text>
 </subparagraph><subparagraph id="H7308F5A8A31F413FBE4E900138D06140"><enum>(G)</enum><text>dental coverage and necessary dental implants;</text> </subparagraph><subparagraph id="H7D394F30F28E4F9BB6D8126E7E5819A2"><enum>(H)</enum><text display-inline="yes-display-inline">hearing aids and other prosthetic devices; and</text>
 </subparagraph><subparagraph id="HAB09A20107C940E795D3836C445A3AA8"><enum>(I)</enum><text>screening for lung problems, such as pulmonary function testing.</text> </subparagraph></paragraph></subsection></section></subtitle></title></legis-body> <attestation><attestation-group><attestation-date chamber="House" date="20161206">Passed the House of Representatives December 6, 2016.</attestation-date><attestor display="yes">Karen L. Haas,</attestor><role>Clerk</role></attestation-group></attestation> </bill> 

