[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2109 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 2109

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


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 27, 2009

   Ms. Speier (for herself, Mrs. Bono Mack, Mrs. Capps, Mr. Moran of 
 Virginia, Ms. Kilroy, Ms. Schakowsky, and Mr. Sestak) 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 Survivorship 
Research and Quality of Life Act of 2009''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) There are almost 11,000,000 cancer survivors (those 
        living with, through, and beyond cancer) in the United States.
            (2) Three out of every four American families will have at 
        least one family member diagnosed with cancer.
            (3) The size of the population of survivors of childhood 
        cancers has grown dramatically, to 300,000 individuals of all 
        ages as of 2007.
            (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.
            (5) 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.
            (6) 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.
            (7) 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, as they account for approximately 13 
        percent of the United States population in 2000, but only 8 
        percent of the survivor population.
            (8) One in 640 adults from age 20 to 39 has a history of 
        cancer.
            (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, psychological, 
        cardiopulmonary, endocrine, and musculoskeletal effects and 
        second malignancies.
            (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.
            (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.
            (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.
            (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.
            (14) The annual cost of cancer in the United States is 
        almost $190,000,000,000 in direct and indirect costs.
            (15) In fiscal year 2001, the National Institutes of Health 
        invested $38,000,000 in survivorship, or less than $4.25 per 
        survivor.

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 317T the following:

``SEC. 317U. 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.
    ``(b) Certain Activities.--In carrying out subsection (a), the 
Secretary shall--
            ``(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;
            ``(2) encourage States to incorporate strategies for 
        improving systems of care for childhood cancer survivors and 
        their families into State comprehensive cancer plans; and
            ``(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.
    ``(c) Childhood Cancer Survivorship.--
            ``(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--
                    ``(A) to include a focus on childhood cancer 
                survivorship, including survivorship in minority and 
                other medically underserved populations; and
                    ``(B) to include childhood cancer survivorship 
                initiatives for improving--
                            ``(i) the monitoring of survivors of all 
                        forms of cancer; and
                            ``(ii) follow-up treatment for childhood 
                        cancer survivors.
            ``(2) Reliance on guidelines.--In carrying out this 
        subsection, the Secretary shall rely, where appropriate, on 
        existing guidelines for care of childhood cancer survivors.''.

SEC. 4. NIH CANCER SURVIVORSHIP PROGRAMS.

    (a) 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).
    (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:

``SEC. 417G. 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.
    ``(b) Priority Areas.--In carrying out subsection (a), the Director 
of the Institute shall give priority to the following:
            ``(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--
                    ``(A) development of a system for patient tracking 
                and analysis;
                    ``(B) establishment of a system of tissue 
                collection, banking, and analysis for childhood 
                cancers, using guidelines from the Office of 
                Biorepositories and Biospecimen Research; and
                    ``(C) coordination of, and resources for, 
                assessment and data collection.
            ``(2) Identification of risk and protective factors related 
        to the development of late effects of cancer.
            ``(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.
            ``(4) Development and implementation of intervention 
        studies for patients and families, including studies focusing 
        on--
                    ``(A) preventive interventions during treatment;
                    ``(B) interventions to lessen the impact of late 
                effects;
                    ``(C) rehabilitative or remediative interventions;
                    ``(D) interventions to promote health behaviors in 
                long-term survivors; and
                    ``(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.
    ``(c) Grants for Research on Causes of Health Disparities in 
Childhood Cancer Survivorship.--
            ``(1) Grants.--The Director of NIH, acting through the 
        Director of the Institute, shall make grants to entities to 
        conduct research relating to--
                    ``(A) childhood cancer survivors within minority 
                populations; and
                    ``(B) health disparities in cancer survivorship 
                outcomes within minority or other medically underserved 
                populations.
            ``(2) Balanced approach.--In making grants for research 
        under paragraph (1)(A) on childhood cancer survivors within 
        minority populations, the Director of NIH shall ensure that 
        such research addresses both the physical and the psychosocial 
        needs of such survivors.
            ``(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:
                    ``(A) Key adverse events after childhood cancer.
                    ``(B) Assessment of health and quality of life in 
                childhood cancer survivors.
                    ``(C) Barriers to follow-up care to childhood 
                cancer survivors.
    ``(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--
            ``(1) transitions in care for childhood cancer survivors;
            ``(2) those professionals who should be part of care teams 
        for childhood cancer survivors;
            ``(3) training of professionals to provide linguistically 
        and culturally competent follow-up care to childhood cancer 
        survivors; and
            ``(4) different models of follow-up care.

``SEC. 417G-1. IMPROVING THE QUALITY OF FOLLOW-UP CARE FOR SURVIVORS OF 
              CHILDHOOD 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)--
            ``(1) to improve the quality of immediate and long-term 
        follow-up care for survivors of childhood cancers and their 
        families; and
            ``(2) to ensure that such care is linguistically and 
        culturally competent.
    ``(b) Eligible Entities.--In this section, the term `eligible 
entity' means--
            ``(1) a medical school;
            ``(2) a children's hospital;
            ``(3) a cancer center;
            ``(4) a hospital with one or more residency programs that 
        serve a significant number of childhood cancer patients;
            ``(5) a graduate training program for health professionals 
        described in subsection (a) who will treat survivors of 
        childhood cancers; or
            ``(6) any other entity with significant experience and 
        expertise in treating survivors of childhood cancers.
    ``(c) Duration.--Each grant under this section shall be for a 
period of 2 years.
    ``(d) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $5,000,000 for each of fiscal 
years 2010 through 2014.

``SEC. 417G-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 
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 Director of NIH 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 follow-up care, 
                monitoring, and other survivorship programs (including 
                peer support and mentoring programs).
                    ``(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.
                    ``(C) Dissemination of other information, as 
                appropriate, to health care providers and 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 from cancer care providers to 
                other health care providers (including family practice 
                physicians and internists) and to cancer survivors and 
                their families, where appropriate.
                    ``(F) Development of various models for providing 
                multidisciplinary care.
    ``(d) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $10,000,000 for each of fiscal 
years 2010 through 2014.''.

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 317U the following:

``SEC. 317V. 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.
    ``(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 with significant experience and 
        expertise in treating survivors of childhood cancers.
    ``(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.
    ``(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--
            ``(1) purchasing or leasing facilities;
            ``(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;
            ``(3) conducting research to improve care for childhood 
        cancer survivors;
            ``(4) providing linguistically and culturally competent 
        information to childhood cancer survivors and their families; 
        and
            ``(5) improving access by minority or other medically 
        underserved populations to the best practices and care for 
        childhood cancer survivors.
    ``(e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $15,000,000 for each of fiscal 
years 2010 through 2014.''.

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 317V the following:

``SEC. 317W. 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.
    ``(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--
            ``(1) patient navigator programs;
            ``(2) peer support programs;
            ``(3) education and outreach for survivors and their 
        families, including developing bilingual materials;
            ``(4) follow-up care for uninsured and underinsured 
        survivors--
                    ``(A) to identify, prevent, or control side effects 
                associated with cancer and its treatment; and
                    ``(B) to screen for cancer recurrence; and
            ``(5) assistance with transportation necessary to receive 
        medical care for survivors and their families who lack adequate 
        transportation resources.
    ``(c) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $10,000,000 for each of fiscal 
years 2010 through 2014.''.
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