Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2013

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 2013''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) An estimated 13,500 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) As of June 2013, there are more than 360,000 childhood 
        cancer survivors living in the United States.
            (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 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.

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. 417H. 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) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $15,000,000 for each of fiscal 
years 2014 through 2018.

``SEC. 417H-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 2013, the Secretary 
may 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.
    ``(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) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $5,000,000 for each of fiscal 
years 2014 through 2018.''.
    (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).

Summary: Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2013 - Amends the Public Health Service Act to allow the Secretary of Health and Human Services (HHS) to make grants to eligible entities to establish pilot programs to develop, study, or evaluate model systems for monitoring and caring for childhood cancer survivors. Authorizes the Secretary to convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer to establish a plan to meet specified objectives relating to medical and psychosocial care workforce development, including: (1) disseminating to health care educators information relevant to providing medical and psychosocial services to individuals with pediatric cancers, (2) adapting curricula for continuing education of the existing workforce, and (3) strengthening the emphasis on psychosocial health care in educational accreditation standards and professional licensing and certification.