[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2058 Introduced in House (IH)]

113th CONGRESS
  1st Session
                                H. R. 2058

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


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 20, 2013

Ms. Speier (for herself, Mr. Rangel, Ms. Lee of California, Mr. Moran, 
Ms. Bordallo, Mr. McCaul, and Mr. Van Hollen) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 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 ``Childhood Cancer Survivors' Quality 
of Life Act of 2013''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (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 today, cure rates have 
        increased to over 80 percent for children and adolescents under 
        age 20.
            (3) The population of survivors of childhood cancers has 
        grown dramatically, to over 360,000 individuals of all ages as 
        of 2012.
            (4) 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. The most common late effects of 
        childhood cancer are neurocognitive, psychological, 
        cardiopulmonary, endocrine, and musculoskeletal effects and 
        secondary malignancies.
            (5) 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.
            (6) 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.
            (7) 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.
            (8) 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.
            (9) 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.

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 shall 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 the following:
                    ``(A) Design of protocols for different models of 
                follow-up care, monitoring, and other survivorship 
                programs (including peer support and mentoring 
                programs).
                    ``(B) Development of various models for providing 
                multidisciplinary care.
                    ``(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.
                    ``(D) Development of support programs to improve 
                the quality of life of cancer survivors.
                    ``(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).
                    ``(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.
                    ``(G) 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.--To carry out this section, 
there is authorized to be appropriated $15,000,000 for each of fiscal 
years 2015 through 2019.

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

    ``(a) In General.--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 `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 
        health care educators information about workforce competencies, 
        models, and preservices curricula relevant to providing medical 
        and psychosocial services to persons 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 health 
        care 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.--To carry out this section, 
there is authorized to be appropriated $5,000,000 for each of fiscal 
years 2015 through 2019.''.
    (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, shall 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)--
                    (A) by striking ``this section and'' and inserting 
                ``subsection (a)(1), subsection (b), and'';
                    (B) by striking ``2013'' and inserting ``2019''; 
                and
                    (C) by inserting after the second sentence the 
                following: ``For purposes of carrying out subsections 
                (a)(2) and (a)(3), there is authorized to be 
                appropriated $10,000,000 for each of fiscal years 2015 
                through 2019.''.

SEC. 5. COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR PEDIATRIC CANCER 
              SURVIVORS.

    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:

``SEC. 317U. CLINICS FOR COMPREHENSIVE LONG-TERM FOLLOW-UP SERVICES FOR 
              PEDIATRIC CANCER SURVIVORS.

    ``(a) 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 survivors.
    ``(b) Eligible Entities.--In this section, the term `eligible 
entity' means--
            ``(1) a school of medicine;
            ``(2) a children's hospital;
            ``(3) a cancer center; or
            ``(4) any other entity determined by the Secretary to have 
        significant experience and expertise in--
                    ``(A) treating pediatric, adolescent, and young 
                adult cancers; or
                    ``(B) integrating medical and psychosocial services 
                for pediatric, adolescent, and young adult cancer 
                survivors and their families.
    ``(c) 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 4 years of establishing 
and operating a clinic for comprehensive, long-term, follow-up services 
for pediatric cancer survivors, which may include the costs of--
            ``(1) providing medical and psychosocial follow-up 
        services, including coordination with the patient's primary 
        care provider and oncologist in order to ensure that the 
        medical needs of survivors are addressed, and providing 
        linguistically and culturally competent information to 
        survivors and families with appropriate outreach to medically 
        underserved populations;
            ``(2) the construction, expansion, and modernization of 
        facilities;
            ``(3) acquiring and leasing facilities and equipment 
        (including paying the costs of amortizing the principal of, and 
        paying the interest on, loans for such facilities and 
        equipment) to support or further the operation of the grantee; 
        and
            ``(4) the construction and structural modification 
        (including equipment acquisition) of facilities to permit the 
        integrated delivery of ongoing medical and psychosocial care to 
        pediatric cancer survivors and their families at a single 
        service site.
    ``(d) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $10,000,000 for each of fiscal 
years 2015 through 2019.''.
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