,i #aacth ,,congress #ast ,session ,h4 ,r4 #bjeh ,,in ,,the ,,house ,,of ,,representatives ,may #bj1 #bjac ,ms4 ,speier 7for herself1 ,mr4 ,rangel1 ,ms4 ,lee of ,california1 ,mr4 ,moran1 ,ms4 ,bordallo1 ,mr4 ,mc,caul1 and ,mr4 ,van ,hollen7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to improve and enhance research and programs on childhood cancer survivorship1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,childhood ,cancer ,survivors' ,quality of ,life ,act of #bjac4 #b4 ,findings ,congress finds the following3 7#a7 ,an estimated #ac1ejj children and adolescents under age #bj are diagnosed with cancer each year4 7#b7 ,in #aifj1 only #d percent of children with cancer survived more than #e years1 but today1 cure rates have increased to over #hj percent for children and adolescents under age #bj4 7#c7 ,the population of survivors of childhood cancers has grown dramatically1 to over #cfj1jjj individuals of all ages as of #bjab4 7#d7 ,as many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment1 with as many as one-fourth experiencing a late effect that is serious or life-threatening4 ,the most common late effects of childhood cancer are neurocognitive1 psychological1 cardiopulmonary1 endocrine1 and musculoskeletal effects and secondary malignancies4 7#e7 ,as a result of disparities in the delivery of cancer care1 minority1 low-income1 and other medically underserved children are more likely to be diagnosed with late stage disease1 experience poorer treatment outcomes1 have shorter survival time with less quality of life1 and experience a substantially greater likelihood of cancer death4 7#f7 ,the late effects of cancer treatment may change as therapies evolve1 which means that the monitoring and care of cancer survivors may need to be modified on a routine basis4 7#g7 ,despite the intense stress caused by childhood cancer1 there is a lack of standardized and coordinated psychosocial care for the children and their families1 from the date of diagnosis through treatment and survivorship4 7#h7 ,the ,institute of ,medicine1 in its report on cancer survivorship entitled ,childhood ,cancer ,survivorship3 ,improving ,care and ,quality of ,life1 states that an organized system of care and a method of care for pediatric cancer survivors is needed4 7#i7 ,focused and well-designed research and pilot health delivery programs can answer questions about the optimal ways to provide health care1 follow-up monitoring services1 and survivorship care to those diagnosed with childhood cancer and contribute to improvements in the quality of care and quality of life of those individuals4 #c4 ,cancer survivorship programs 7a7 ,cancer survivorship programs ,subpart #a of part ,c of title ,,iv of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhe et seq47 is amended by adding at the end the following3 #dag;,g4 ,pilot programs to explore model systems of care for pediatric cancer survivors 7a7 ,in general ,the ,secretary shall make grants to eligible entities to establish pilot programs to develop1 study1 or evaluate model systems for monitoring and caring for childhood cancer survivors4 7b7 ,eligible entities ,in this section1 the term eligible entity means-- 7#a7 a medical school2 7#b7 a children's hospital2 7#c7 a cancer center2 or 7#d7 any other entity with significant experience and expertise in treating survivors of childhood cancers4 7c7 ,use of funds ,the ,secretary may make a grant under this section to an eligible entity only if the entity agrees-- 7#a7 to use the grant to establish a pilot program to develop1 study1 or evaluate one or more model systems for monitoring and caring for cancer survivors2 and 7#b7 in developing1 studying1 and evaluating such systems1 to give special emphasis to the following3 7,a7 ,design of protocols for different models of follow-up care1 monitoring1 and other survivorship programs 7including peer support and mentoring programs74 7,b7 ,development of various models for providing multidisciplinary care4 7,c7 ,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 families4 7,d7 ,development of support programs to improve the quality of life of cancer survivors4 7,e7 ,design of systems for the effective transfer of treatment information and care summaries from cancer care providers to other health care providers 7including risk factors and a plan for recommended follow-up care74 7,f7 ,dissemination of the information and programs described in subparagraphs 7,a7 through 7,e7 to other health care providers 7including primary care physicians and internists7 and to cancer survivors and their families1 where appropriate4 7,g7 ,development of initiatives that promote the coordination and effective transition of care between cancer care providers1 primary care physicians1 and mental health professionals4 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #ae1jjj1jjj for each of fiscal years #bjae through #bjai4 #dag;,g-#a4 ,workforce development collaborative on medical and psychosocial care for childhood cancer survivors 7a7 ,in general ,the ,secretary shall1 not later than #a year after the date of enactment of this ,act1 convene a ,workforce ,development ,collaborative on ,medical and ,psychosocial ,care for ,pediatric ,cancer ,survivors 7referred to in this paragraph as the ,collaborative74 ,the ,collaborative shall be a cross-specialty1 multidisciplinary group composed of educators1 consumer and family advocates1 and providers of psychosocial and biomedical health services4 7b7 ,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 development3 7#a7 ,identifying1 refining1 and broadly disseminating to health care educators information about workforce competencies1 models1 and preservices curricula relevant to providing medical and psychosocial services to persons with pediatric cancers4 7#b7 ,adapting curricula for continuing education of the existing workforce using efficient workplace-based learning approaches4 7#c7 ,developing the skills of faculty and other trainers in teaching psychosocial health care using evidence-based teaching strategies4 7#d7 ,strengthening the emphasis on psychosocial health care in educational accreditation standards and professional licensing and certification exams by recommending revisions to the relevant oversight organizations4 7#e7 ,evaluating the effectiveness of patient navigators in pediatric cancer survivorship care4 7#f7 ,evaluating the effectiveness of peer support programs in the psychosocial care of pediatric cancer patients and survivors4 7c7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #e1jjj1jjj for each of fiscal years #bjae through #bjai4 4 7b7 ,technical amendment 7#a7 ,in general ,section #c of the ,hematological ,cancer ,research ,investment and ,education ,act of #bjjb 7,public ,law #ajg-agb2 #aaf ,stat4 #eda7 is amended by striking section #dai;,c and inserting section #dag;,c4 7#b7 ,effective date ,the amendment made by paragraph 7#a7 shall take effect as if included in section #c of the ,hematological ,cancer ,research ,investment and ,education ,act of #bjjb 7,public ,law #ajg-agb2 #aaf ,stat4 #eda74 #d4 ,grants to improve care for pediatric cancer survivors ,section #dag;,e of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhe;a-#aa7 is amended-- 7#a7 in the heading1 by striking research and awareness and inserting research1 awareness1 and survivorship2 7#b7 in subsection 7a7-- 7,a7 by redesignating paragraph 7#b7 as paragraph 7#d72 and 7,b7 by inserting after paragraph 7#a7 the following3 7#b7 ,research on causes of health disparities in pediatric cancer survivorship 7,a7 ,grants ,the ,director of ,,nih1 acting through the ,director of the ,institute1 in coordination with ongoing research activities1 shall make grants to entities to conduct research relating to-- 7i7 needs and outcomes of pediatric cancer survivors within minority or other medically underserved populations2 7ii7 health disparities in pediatric cancer survivorship outcomes within minority or other medically underserved populations2 7iii7 barriers that pediatric cancer survivors within minority or other medically underserved populations face in receiving follow-up care2 and 7iv7 familial1 socioeconomic1 and other environmental factors and the impact of such factors on treatment outcomes and survivorship4 7,b7 ,balanced approach ,in making grants for research under subparagraph 7,a77i7 on pediatric cancer survivors within minority or other medically underserved populations1 the ,director of ,,nih shall ensure that such research addresses both the physical and the psychological needs of such survivors4 7#c7 ,research on late effects and follow-up care for pediatric cancer survivors ,the ,director of ,,nih1 in coordination with ongoing research activities1 shall conduct or support research on follow-up care for pediatric cancer survivors1 with special emphasis given to-- 7,a7 the development of indicators used for long-term patient tracking and analysis of the late effects of cancer treatment for pediatric cancer survivors2 7,b7 the identification of risk factors associated with the late effects of cancer treatment2 7,c7 the identification of predictors of neurocognitive and psychosocial outcomes2 7,d7 initiatives to protect cancer survivors from the late effects of cancer treatment2 7,e7 transitions in care for pediatric cancer survivors2 7,f7 training of professionals to provide linguistically and culturally competent follow-up care to pediatric cancer survivors2 and 7,g7 different models of follow-up care4 2 and 7#c7 in subsection 7d7-- 7,a7 by striking this section and and inserting subsection 7a77#a71 subsection 7b71 and2 7,b7 by striking #bjac and inserting #bjai2 and 7,c7 by inserting after the second sentence the following3 ,for purposes of carrying out subsections 7a77#b7 and 7a77#c71 there is authorized to be appropriated #aj1jjj1jjj for each of fiscal years #bjae through #bjai44 #e4 ,comprehensive long-term follow-up services for pediatric cancer survivors ,part ,b of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bdc et seq47 is amended by inserting after section #cag,t the following3 #cag,u4 ,clinics for comprehensive long-term follow-up services for pediatric cancer survivors 7a7 ,in ,general ,the ,secretary shall make grants to eligible entities to establish and operate a clinic for comprehensive long-term follow-up services for pediatric cancer survivors4 7b7 ,eligible entities ,in this section1 the term eligible entity means-- 7#a7 a school of medicine2 7#b7 a children's hospital2 7#c7 a cancer center2 or 7#d7 any other entity determined by the ,secretary to have significant experience and expertise in-- 7,a7 treating pediatric1 adolescent1 and young adult cancers2 or 7,b7 integrating medical and psychosocial services for pediatric1 adolescent1 and young adult cancer survivors and their families4 7c7 ,use of funds ,the ,secretary may make a grant under this section to an eligible entity only if the entity agrees to use the grant to pay costs incurred during the first #d years of establishing and operating a clinic for comprehensive1 long-term1 follow-up services for pediatric cancer survivors1 which may include the costs of-- 7#a7 providing medical and psychosocial follow-up services1 including coordination with the patient's primary care provider and oncologist in order to ensure that the medical needs of survivors are addressed1 and providing linguistically and culturally competent information to survivors and families with appropriate outreach to medically underserved populations2 7#b7 the construction1 expansion1 and modernization of facilities2 7#c7 acquiring and leasing facilities and equipment 7including paying the costs of amortizing the principal of1 and paying the interest on1 loans for such facilities and equipment7 to support or further the operation of the grantee2 and 7#d7 the construction and structural modification 7including equipment acquisition7 of facilities to permit the integrated delivery of ongoing medical and psychosocial care to pediatric cancer survivors and their families at a single service site4 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #aj1jjj1jjj for each of fiscal years #bjae through #bjai4 4