[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. 1613 Introduced in Senate (IS)]

112th CONGRESS
  1st Session
                                S. 1613

   To improve and enhance research and programs on childhood cancer 
                 survivorship, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 22, 2011

  Mr. Reed (for himself and Mrs. Hutchison) introduced the following 
  bill; which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
   To improve and enhance research and programs on childhood cancer 
                 survivorship, and for other purposes.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Pediatric, Adolescent, and Young 
Adult Cancer Survivorship Research and Quality of Life Act of 2011''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) An estimated 12,400 children and adolescents under age 
        20 are diagnosed with cancer each year.
            (2) In 1960, only 4 percent of children with cancer 
        survived more than 5 years, but by 2011, cure rates have 
        increased to 78 percent for children and adolescents under age 
        20.
            (3) The population of survivors of childhood cancers has 
        grown dramatically, to more than 300,000 individuals of all 
        ages as of 2007.
            (4) As many as \2/3\ of childhood cancer survivors are 
        likely to experience at least one late effect of treatment, 
        with as many as \1/4\ experiencing a late effect that is 
        serious or life-threatening. The most common late effects of 
        childhood cancer are neurocognitive, psychological, 
        cardiopulmonary, endocrine, and musculoskeletal effects and 
        secondary malignancies.
            (5) The late effects of cancer treatment may change as 
        treatments evolve, which means that the monitoring and 
        treatment of cancer survivors may need to be modified on a 
        routine basis.
            (6) The Institute of Medicine, in its reports 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.

SEC. 3. CANCER SURVIVORSHIP PROGRAMS.

    (a) Cancer Survivorship Programs.--Subpart 1 of part C of title IV 
of the Public Health Service Act (42 U.S.C. 285 et seq.) is amended by 
adding at the end the following:

``SEC. 417G. PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS OF CARE FOR 
              PEDIATRIC CANCER SURVIVORS.

    ``(a) In General.--The Secretary may make grants to eligible 
entities to establish pilot programs to develop, study, or evaluate 
model systems for monitoring and caring for childhood cancer survivors.
    ``(b) Eligible Entities.--In this section, the term `eligible 
entity' means--
            ``(1) a medical school;
            ``(2) a children's hospital;
            ``(3) a cancer center; or
            ``(4) any other entity with significant experience and 
        expertise in treating survivors of childhood cancers.
    ``(c) Use of Funds.--The Secretary may make a grant under this 
section to an eligible entity only if the entity agrees--
            ``(1) to use the grant to establish a pilot program to 
        develop, study, or evaluate one or more model systems for 
        monitoring and caring for cancer survivors; and
            ``(2) in developing, studying, and evaluating such systems, 
        to give special emphasis to--
                    ``(A) the design of protocols for different models 
                of follow-up care, monitoring, and other survivorship 
                programs (including peer support and mentoring 
                programs);
                    ``(B) the development of various models for 
                providing multidisciplinary care;
                    ``(C) the 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;
                    ``(D) the development of support programs to 
                improve the quality of life of cancer survivors;
                    ``(E) the 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);
                    ``(F) the dissemination of the information and 
                programs described in subparagraphs (A) through (E) to 
                other health care providers (including primary care 
                physicians and internists) to cancer survivors and 
                their families, where appropriate; and
                    ``(G) the development of initiatives that promote 
                the coordination and effective transition of care 
                between cancer care providers, primary care physicians, 
                and mental health professionals.
    ``(d) Funding.--For each of fiscal years 2013 through 2017, the 
Secretary may transfer out of funds otherwise appropriated to the 
Department of Health and Human Services for a fiscal year the amount 
necessary to carry out this section.

``SEC. 417G-1. WORKFORCE DEVELOPMENT COLLABORATIVE ON MEDICAL AND 
              PSYCHOSOCIAL CARE FOR CHILDHOOD CANCER SURVIVORS.

    ``(a) In General.--Not later than 1 year after the date of 
enactment of the Pediatric, Adolescent, and Young Adult Cancer 
Survivorship Research and Quality of Life Act of 2011, the Secretary 
may convene a Workforce Development Collaborative on Medical and 
Psychosocial Care for Pediatric Cancer Survivors (referred to in this 
paragraph 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.
    ``(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:
            ``(1) Identifying, refining, and broadly disseminating to 
        healthcare educators information about workforce competencies, 
        models, and preservices curricula relevant to providing medical 
        and psychosocial services to individuals with pediatric 
        cancers.
            ``(2) Adapting curricula for continuing education of the 
        existing workforce using efficient workplace-based learning 
        approaches.
            ``(3) Developing the skills of faculty and other trainers 
        in teaching psychosocial health care using evidence-based 
        teaching strategies.
            ``(4) Strengthening the emphasis on psychosocial healthcare 
        in educational accreditation standards and professional 
        licensing and certification exams by recommending revisions to 
        the relevant oversight organizations.
            ``(5) Evaluating the effectiveness of patient navigators in 
        pediatric cancer survivorship care.
            ``(6) Evaluating the effectiveness of peer support programs 
        in the psychosocial care of pediatric cancer patients and 
        survivors.
    ``(c) Funding.--For each of fiscal years 2013 through 2017, the 
Secretary may transfer out of funds otherwise appropriated to the 
Department of Health and Human Services for a fiscal year the amount 
necessary to carry out this section.''.
    (b) Technical Amendment.--
            (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''.
            (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).

SEC. 4. GRANTS TO IMPROVE CARE FOR PEDIATRIC CANCER SURVIVORS.

    Section 417E of the Public Health Service Act (42 U.S.C. 285a-11) 
is amended--
            (1) in the heading, by striking ``research and awareness'' 
        and inserting ``research, awareness, and survivorship'';
            (2) in subsection (a)--
                    (A) by redesignating paragraph (2) as paragraph 
                (4); and
                    (B) by inserting after paragraph (1) the following:
            ``(2) Research on causes of health disparities in pediatric 
        cancer survivorship.--
                    ``(A) Grants.--The Director of NIH, acting through 
                the Director of the Institute, in coordination with 
                ongoing research activities, may make grants to 
                entities to conduct research relating to--
                            ``(i) needs and outcomes of pediatric 
                        cancer survivors within minority or other 
                        medically underserved populations;
                            ``(ii) health disparities in pediatric 
                        cancer survivorship outcomes within minority or 
                        other medically underserved populations;
                            ``(iii) barriers that pediatric cancer 
                        survivors within minority or other medically 
                        underserved populations face in receiving 
                        follow-up care; and
                            ``(iv) familial, socioeconomic, and other 
                        environmental factors and the impact of such 
                        factors on treatment outcomes and survivorship.
                    ``(B) Balanced approach.--In making grants for 
                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.
            ``(3) Research on late effects and follow-up care for 
        pediatric cancer survivors.--The Director of NIH, in 
        coordination with ongoing research activities, shall conduct or 
        support research on follow-up care for pediatric cancer 
        survivors, with special emphasis given to--
                    ``(A) the development of indicators used for long-
                term patient tracking and analysis of the late effects 
                of cancer treatment for pediatric cancer survivors;
                    ``(B) the identification of risk factors associated 
                with the late effects of cancer treatment;
                    ``(C) the identification of predictors of 
                neurocognitive and psychosocial outcomes;
                    ``(D) initiatives to protect cancer survivors from 
                the late effects of cancer treatment;
                    ``(E) transitions in care for pediatric cancer 
                survivors;
                    ``(F) training of professionals to provide 
                linguistically and culturally competent follow-up care 
                to pediatric cancer survivors; and
                    ``(G) different models of follow-up care.''; and
            (3) in subsection (d), by striking ``2013'' and inserting 
        ``2017''.
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