S 2877 ISCommentsClose CommentsPermalink

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

April 17, 2008

Mr. REID (for Mrs. CLINTON) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and PensionsCommentsClose CommentsPermalink

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

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

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 2008.'CommentsClose CommentsPermalink

SEC. 2. FINDINGS.

The Congress finds as follows:CommentsClose CommentsPermalink





(1) There are more than 10,000,000 cancer survivors (those living with, through, and beyond cancer) in the United States.CommentsClose CommentsPermalink





(2) Three out of every four American families will have at least one family member diagnosed with cancer.CommentsClose CommentsPermalink





(3) The size of the population of survivors of childhood cancers has grown dramatically, to 270,000 individuals of all ages as of 1997.CommentsClose CommentsPermalink





(4) In 1960, only 4 percent of children with cancer survived more than 5 years, but treatment advances have changed the outlook for many children diagnosed with cancer.CommentsClose CommentsPermalink





(5) According to the Intercultural Cancer Council, because of disparities in health care delivery throughout the cancer care continuum--from prevention, screening, and diagnosis through cancer treatment, follow-up, and end-of-life care--minority, poor, and other medically underserved communities 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.CommentsClose CommentsPermalink





(6) The Institute of Medicine, in its report entitled `From Cancer Patient to Cancer Survivor: Lost in Transition', states that there are disparities in cancer survivorship. For instance, African-Americans are underrepresented in the cancer survivor population--they made up approximately 13 percent of the United States population in 2000, but only 8 percent of the survivor population.CommentsClose CommentsPermalink





(7) The 5-year survival rate for children with cancer improved from 56 percent for those diagnosed between 1974 and 1976 to 79 percent for those diagnosed between 1995 and 2000.CommentsClose CommentsPermalink





(8) One in 640 adults from age 20 to 39 has a history of cancer.CommentsClose CommentsPermalink





(9) 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 and psychological, cardiopulmonary, endocrine and musculoskeletal, and second malignancies.CommentsClose CommentsPermalink





(10) Some late effects are identified early in follow-up and are easily resolved, while others may become chronic problems in adulthood and may have serious consequences.CommentsClose CommentsPermalink





(11) The late effects of treatment may change as treatments evolve, which means that the monitoring and treatment of late effects may need to be modified on a routine basis.CommentsClose CommentsPermalink





(12) The Institute of Medicine, in its reports on cancer survivorship entitled `Childhood Cancer Survivorship: Improving Care and Quality of Life' and `From Cancer Patient to Cancer Survivor: Lost in Transition', has offered a number of recommendations for improving monitoring and follow-up care for cancer survivors and enhancing the cancer survivorship research agenda.CommentsClose CommentsPermalink





(13) The Institute of Medicine has also noted the significant health insurance problems that may be experienced by survivors of childhood cancer as well as adult cancer survivors and has recommended that policy makers take action to ensure access to care, including appropriate follow-up care, by all cancer survivors.CommentsClose CommentsPermalink





(14) The annual cost of cancer in the United States is more than $190,000,000,000 in direct and indirect costs.CommentsClose CommentsPermalink

SEC. 3. CDC CANCER CONTROL PROGRAMS.

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended by inserting after section 317S the following:CommentsClose CommentsPermalink

`SEC. 317T. CANCER CONTROL PROGRAMS.

`(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall expand and intensify the cancer control programs of the Centers, including programs for conducting surveillance activities or supporting State comprehensive cancer control plans.CommentsClose CommentsPermalink





`(b) Certain Activities- In carrying out subsection (a), the Secretary shall--CommentsClose CommentsPermalink





`(1) in collaboration with the Director of the National Cancer Institute, provide guidance to States on projects and interventions that may be incorporated into State comprehensive cancer control programs to improve the long-term health status of childhood cancer survivors, including childhood cancer survivors in minority and other medically underserved populations;CommentsClose CommentsPermalink





`(2) encourage States to incorporate strategies for improving systems of care for childhood cancer survivors and their families into State comprehensive cancer plans; andCommentsClose CommentsPermalink





`(3) collaborate with the Director of the National Cancer Institute to improve existing surveillance systems or develop appropriate new systems for tracking cancer survivors and assessing their health status and risk for other chronic and disabling conditions.CommentsClose CommentsPermalink





`(c) Childhood Cancer Survivorship-CommentsClose CommentsPermalink





`(1) FOCUS ON CHILDHOOD CANCER SURVIVORSHIP- In conducting or supporting national, State, and local comprehensive cancer control programs through the Centers for Disease Control and Prevention, the Secretary shall enhance such programs--CommentsClose CommentsPermalink





`(A) to include a focus on childhood cancer survivorship, including survivorship in minority and other medically underserved populations; andCommentsClose CommentsPermalink





`(B) to include childhood cancer survivorship initiatives for improving--CommentsClose CommentsPermalink





`(i) the monitoring of survivors of all forms of cancer; andCommentsClose CommentsPermalink





`(ii) follow-up treatment for survivors.CommentsClose CommentsPermalink





`(2) RELIANCE ON GUIDELINES- In carrying out this subsection, the Secretary shall rely, where appropriate, on existing guidelines for care of childhood cancer survivors.'.CommentsClose CommentsPermalink

SEC. 4. NIH CANCER SURVIVORSHIP PROGRAMS.

(a) Technical Amendment-CommentsClose CommentsPermalink





(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'.CommentsClose CommentsPermalink





(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).CommentsClose CommentsPermalink





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

`SEC. 417E. EXPANSION OF CANCER SURVIVORSHIP ACTIVITIES.

`(a) Expansion of Activities- The Director of the Institute shall coordinate the activities of the National Institutes of Health with respect to cancer survivorship, including childhood cancer survivorship.CommentsClose CommentsPermalink





`(b) Priority Areas- In carrying out subsection (a), the Director of the Institute shall give priority to the following:CommentsClose CommentsPermalink





`(1) Comprehensive assessment of the prevalence and etiology of late effects of cancer and its treatment, including physical, neurocognitive, and psychosocial late effects. Such assessment shall include--CommentsClose CommentsPermalink





`(A) development of a system for patient tracking and analysis;CommentsClose CommentsPermalink





`(B) establishment of a system of tissue collection, banking, and analysis for childhood cancers, using guidelines from the Office of Biorepositories and Biospecimen Research; andCommentsClose CommentsPermalink





`(C) coordination of, and resources for, assessment and data collection.CommentsClose CommentsPermalink





`(2) Identification of risk and protective factors related to the development of late effects of cancer.CommentsClose CommentsPermalink





`(3) Identification of predictors of neurocognitive and psychosocial outcomes, including quality of life, in cancer survivors and identification of qualify of life and other outcomes in family members.CommentsClose CommentsPermalink





`(4) Development and implementation of intervention studies for patients and families, including studies focusing on--CommentsClose CommentsPermalink





`(A) preventive interventions during treatment;CommentsClose CommentsPermalink





`(B) interventions to lessen the impact of late effects;CommentsClose CommentsPermalink





`(C) rehabilitative or remediative interventions;CommentsClose CommentsPermalink





`(D) interventions to promote health behaviors in long-term survivors; andCommentsClose CommentsPermalink





`(E) interventions to improve health care utilization and access to linguistically and culturally competent long-term follow-up care for childhood cancer survivors in minority and other medically underserved populations.CommentsClose CommentsPermalink





`(c) Grants for Research on Causes of Health Disparities in Childhood Cancer Survivorship-CommentsClose CommentsPermalink





`(1) GRANTS- The Director of NIH, acting through the Director of the Institute, shall make grants to entities to conduct research relating to--CommentsClose CommentsPermalink





`(A) pediatric cancer survivors within minority populations; andCommentsClose CommentsPermalink





`(B) health disparities in cancer survivorship outcomes within minority or other medically underserved populations.CommentsClose CommentsPermalink





`(2) BALANCED APPROACH- In making grants for research under paragraph (1)(A) on pediatric cancer survivors within minority populations, the Director of NIH shall ensure that such research addresses both the physical and the psychological needs of such survivors.CommentsClose CommentsPermalink





`(3) HEALTH DISPARITIES- In making grants for research under paragraph (1)(B) on health disparities in cancer survivorship outcomes within minority populations, the Director of NIH shall ensure that such research examines each of the following:CommentsClose CommentsPermalink





`(A) Key adverse events after childhood cancer.CommentsClose CommentsPermalink





`(B) Assessment of health and quality of life in childhood cancer survivors.CommentsClose CommentsPermalink





`(C) Barriers to follow-up care to childhood cancer survivors.CommentsClose CommentsPermalink





`(d) Research To Evaluate Follow-up Care for Childhood Cancer Survivors- The Director of NIH shall conduct or support research to evaluate systems of follow-up care for childhood cancer survivors, with special emphasis given to--CommentsClose CommentsPermalink





`(1) transitions in care for childhood cancer survivors;CommentsClose CommentsPermalink





`(2) those professionals who should be part of care teams for childhood cancer survivors;CommentsClose CommentsPermalink





`(3) training of professionals to provide linguistically and culturally competent follow-up care to childhood cancer survivors; andCommentsClose CommentsPermalink





`(4) different models of follow-up care.CommentsClose CommentsPermalink

`SEC. 417E-1. IMPROVING THE QUALITY OF FOLLOW-UP CARE FOR SURVIVORS OF CHILDHOOD, ADOLESCENT, AND YOUNG ADULT CANCERS AND THEIR FAMILIES.

`(a) In General- The Secretary, in consultation with the Director of NIH, shall make grants to eligible entities to establish or improve training programs for health care professionals (including physicians, nurses, physician assistants, and mental health professionals)--CommentsClose CommentsPermalink





`(1) to improve the quality of immediate and long-term follow-up care for survivors of childhood, adolescent, and young adult cancers and their families; andCommentsClose CommentsPermalink





`(2) to ensure that such care is linguistically and culturally competent.CommentsClose CommentsPermalink





`(b) Eligible Entities- In this section, the term `eligible entity' means--CommentsClose CommentsPermalink





`(1) a medical school;CommentsClose CommentsPermalink





`(2) a children's hospital;CommentsClose CommentsPermalink





`(3) a cancer center;CommentsClose CommentsPermalink





`(4) a hospital with one or more residency programs that serve a significant number of pediatric cancer patients;CommentsClose CommentsPermalink





`(5) a graduate training program for health professionals described in subsection (a) who will treat survivors of childhood, adolescent, and young adult cancers; orCommentsClose CommentsPermalink





`(6) any other entity with significant experience and expertise in treating survivors of childhood, adolescent, and young adult cancers.CommentsClose CommentsPermalink





`(c) Duration- Each grant under this section shall be for a period of 2 years.CommentsClose CommentsPermalink





`(d) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated $5,000,000 for each of fiscal years 2009 through 2013.CommentsClose CommentsPermalink

`SEC. 417E-2. STUDY OF PILOT PROGRAMS TO EXPLORE MODEL SYSTEMS OF CARE.

`(a) In General- The Director of NIH, in consultation with the Administrator of the Health Resources and Services Administration, shall make grants to eligible entities to establish pilot programs to develop, study, or evaluate model systems for monitoring and caring for cancer survivors.CommentsClose CommentsPermalink





`(b) Eligible Entities- In this section, the term `eligible entity' means--CommentsClose CommentsPermalink





`(1) a medical school;CommentsClose CommentsPermalink





`(2) a children's hospital;CommentsClose CommentsPermalink





`(3) a cancer center; orCommentsClose CommentsPermalink





`(4) any other entity with significant experience and expertise in treating survivors of childhood, adolescent, and young adult cancers.CommentsClose CommentsPermalink





`(c) Use of Funds- The Director of NIH may make a grant under this section to an eligible entity only if the entity agrees--CommentsClose CommentsPermalink





`(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; andCommentsClose CommentsPermalink





`(2) in developing, studying, and evaluating such systems, to give special emphasis to the following:CommentsClose CommentsPermalink





`(A) Design of protocols for follow-up care, monitoring, and other survivorship programs (including peer support and mentoring programs).CommentsClose CommentsPermalink





`(B) Dissemination of information to health care providers about how to provide linguistically and culturally competent follow-up care and monitoring to cancer survivors and their families.CommentsClose CommentsPermalink





`(C) Dissemination of other information, as appropriate, to health care providers and to cancer survivors and their families.CommentsClose CommentsPermalink





`(D) Development of support programs to improve the quality of life of cancer survivors.CommentsClose CommentsPermalink





`(E) Design of systems for the effective transfer of treatment information from cancer care providers to other health care providers (including family practice physicians and internists) and to cancer survivors and their families, where appropriate.CommentsClose CommentsPermalink





`(F) Development of various models for providing multidisciplinary care.CommentsClose CommentsPermalink





`(d) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated $8,000,000 for each of fiscal years 2009 through 2013.'.CommentsClose CommentsPermalink

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

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.), as amended by section 3, is amended by inserting after section 317T the following:CommentsClose CommentsPermalink

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

`(a) In General- The Secretary shall make grants to eligible entities to pay all or a portion of the costs incurred during the first 4 years of establishing and operating a clinic for comprehensive long-term follow-up services for childhood cancer survivors.CommentsClose CommentsPermalink





`(b) Eligible Entities- In this section, the term `eligible entity' means--CommentsClose CommentsPermalink





`(1) a school of medicine;CommentsClose CommentsPermalink





`(2) a children's hospital;CommentsClose CommentsPermalink





`(3) a cancer center; orCommentsClose CommentsPermalink





`(4) any other entity with significant experience and expertise in treating surviving childhood, adolescent, and young adult cancers.CommentsClose CommentsPermalink





`(c) Priority- In making grants under this section, the Secretary shall give priority to any eligible entity that demonstrates an expertise in improving access to care for minority and other medically underserved populations.CommentsClose CommentsPermalink





`(d) 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 childhood cancer survivors. Such costs may include the costs of--CommentsClose CommentsPermalink





`(1) purchasing or leasing facilities;CommentsClose CommentsPermalink





`(2) providing medical and psychosocial follow-up services, including coordination with the patient's primary care provider and oncologist in order to ensure that the unique medical needs of survivors are addressed;CommentsClose CommentsPermalink





`(3) conducting research to improve care for cancer survivors;CommentsClose CommentsPermalink





`(4) providing linguistically and culturally competent information to survivors and their families; andCommentsClose CommentsPermalink





`(5) improving access by minority or other medically underserved populations to the best practices and care for childhood cancer survivors.CommentsClose CommentsPermalink





`(e) Authorization of Appropriations- To carry out this section, there is authorized to be appropriated $12,000,000 for each of fiscal years 2009 through 2013.'.CommentsClose CommentsPermalink

SEC. 6. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILDHOOD CANCER SURVIVORS.

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.), as amended by section 5, is amended by inserting after section 317U the following:CommentsClose CommentsPermalink

`SEC. 317V. GRANTS TO IMPROVE ACCESS TO CARE FOR CHILDHOOD CANCER SURVIVORS.

`(a) Grants- The Secretary shall make grants to recognized childhood cancer professional and advocacy organizations to improve physical and psychosocial care for childhood cancer survivors, especially childhood cancer survivors in minority or other medically underserved populations.CommentsClose CommentsPermalink





`(b) Use of Funds- The Secretary may make a grant under this section to an organization only if the organization agrees to use the grant to improve physical and psychosocial care for childhood cancer survivors, especially childhood cancer survivors in minority or other medically underserved populations. Such care may include--CommentsClose CommentsPermalink





`(1) patient navigator programs;CommentsClose CommentsPermalink





`(2) peer support programs;CommentsClose CommentsPermalink





`(3) education and outreach for survivors and their families, including developing bilingual materials;CommentsClose CommentsPermalink





`(4) follow-up care for uninsured and underinsured survivors--CommentsClose CommentsPermalink





`(A) to identify, prevent, or control side effects associated with cancer and its treatment; andCommentsClose CommentsPermalink





`(B) to screen for cancer recurrence; andCommentsClose CommentsPermalink





`(5) assistance with transportation necessary to receive medical care for survivors and their families who lack adequate transportation resources.CommentsClose CommentsPermalink





`(c) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated $5,000,000 for each of fiscal years 2009 through 2013.'.CommentsClose CommentsPermalink