II 112th CONGRESS 1st Session S. 1613 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.

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.

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.

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:

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.

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).

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.