[Congressional Record Volume 157, Number 142 (Thursday, September 22, 2011)]
[Senate]
[Pages S5909-S5910]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. REED (for himself and Mrs. Hutchison):
  S. 1613. A bill to improve and enhance research and programs on 
childhood cancer survivorship, and for other purposes; to the Committee 
on Health, Education, Labor, and Pensions.
  Mr. REED. Mr. President, I am pleased to be joined today by Senator 
Hutchison in the introduction of the Pediatric, Adolescent, and Young 
Adult Cancer Survivorship Research and Quality of Life Act of 2011.
  The population of survivors of childhood cancer has grown 
exponentially over the years. In 1960, only 4 percent of children with 
cancer survived more than 5 years. Today, nearly 80 percent of children 
with cancer survive more than five years. While this is heartening 
news, as a result of their cancer and treatment, many of these children 
unfortunately have health complications, often life-threatening, for 
years to come. Indeed, after beating cancer, as many as \2/3\ of these 
children suffer from late effects of their disease or treatment, 
including second cancers and heart and lung damage. There are also 
serious psychosocial impacts that these survivors face.
  With so many facing the risk of these late effects, it is critical 
that resources are made available to help these survivors, especially 
those in underserved communities. Our legislation would enhance 
research on the late effects of childhood cancers and improve 
collaboration among providers so that doctors are better able to care 
for this population as they age. It would also establish a new pilot 
program to begin to explore models of care for childhood cancer 
survivors. Creating standard protocols and procedures will help 
providers, patients, and families know what to expect after beating 
cancer, including when to get certain check-ups and tests that guard 
against late effects.
  This bill is part of a continuing effort to focus greater attention 
on childhood cancers. In 2008, I worked on a bipartisan basis to enact, 
the Caroline Pryce Walker Conquer Childhood Cancer Act. This law has 
increased support for research on childhood cancers and improved 
treatment for patients. But we must not stop there.
  The legislation Senator Hutchison and I are introducing today to 
address the late effects of childhood cancer, will do more to help 
childhood cancer patients. I look forward to working with my colleagues 
to pass this legislation and help ensure that children who survive 
cancer live a long and healthy life.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the text of the bill was ordered to be 
printed in the Record, as follows:

                                S. 1613

       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).

[[Page S5910]]

     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''.
                                 ______