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[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5390 Introduced in House (IH)]

109th CONGRESS
  2d Session
                                H. R. 5390

  To provide for the expansion and coordination of activities of the 
 National Institutes of Health and the Centers for Disease Control and 
      Prevention with respect to research and programs on cancer 
                 survivorship, and for other purposes.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                              May 16, 2006

 Mr. Wicker (for himself and Mr. Hoyer) introduced the following bill; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL

 
  To provide for the expansion and coordination of activities of the 
 National Institutes of Health and the Centers for Disease Control and 
      Prevention with respect to research and programs on 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 ``Cancer Survivorship Research and 
Quality of Life Act of 2006''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) There are more than 10 million cancer survivors (those 
        living with, through, and beyond cancer) in the United States.
            (2) One out of two men and one out of three women will 
        receive a cancer diagnosis during their lifetime.
            (3) One of every four deaths in the United States is from 
        cancer. In 2005, 570,000 Americans, or more than 1,500 a day, 
        will die from cancer.
            (4) Despite the significant annual burden of cancer deaths, 
        improvements in detection and treatment have prolonged the 
        lives of many cancer survivors or resulted in cures for others. 
        As a result of these developments, the number of survivors 
        continues to grow.
            (5) More than three-fifths of adults diagnosed with cancer 
        today will be alive five years from now.
            (6) In 1960, only four percent of children with cancer 
        survived more than five years, but treatment advances have 
        changed the outlook for many children diagnosed with cancer.
            (7) The five-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.
            (8) The size of the population of survivors of childhood 
        cancers has grown dramatically, to 270,000 individuals of all 
        ages as of 1997, which means that 1 in 640 adults from age 20 
        to 39 has a history of cancer.
            (9) Adults who are treated for cancer may have complex and 
        long-term effects from their treatment, resulting in unique 
        health care needs.
            (10) Some effects of treatment may be experienced at the 
        time of treatment or soon after, while others may not be 
        noticed until the patient ages or develops other health 
        conditions.
            (11) 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.
            (12) 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.
            (13) 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.
            (14) 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 the monitoring and follow-up 
        care for cancer survivors and enhancing the cancer survivorship 
        research agenda.
            (15) 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.
            (16) The annual cost of cancer in the United States is 
        almost $190 billion in direct and indirect costs.

SEC. 3. CANCER CONTROL PROGRAMS.

    Section 412 of the Public Health Service Act (42 U.S.C. 285a-1) is 
amended--
            (1) in the first sentence, by inserting ``, for 
        survivorship,'' after ``treatment of cancer'';
            (2) in paragraph (1)(B), by striking ``cancer patients'' 
        and all that follows and inserting ``cancer patients, families 
        of cancer patients, and cancer survivors; and''; and
            (3) in paragraph (3), by inserting ``and concerning cancer 
        survivorship programs,'' after ``control of cancer''.

SEC. 4. EXPANSION AND COORDINATION OF ACTIVITIES OF NATIONAL INSTITUTES 
              OF HEALTH WITH RESPECT TO CANCER SURVIVORSHIP RESEARCH.

    (a) In General.--
            (1) Technical amendment.--Section 3 of Public Law 107-172 
        (116 Stat. 541) is amended by striking ``section 419C'' and 
        inserting ``section 417C''.
            (2) New section.--Subpart 1 of part C of title IV of the 
        Public Health Service Act (42 U.S.C. 285 et seq.), as amended 
        pursuant to paragraph (1) of this subsection, is amended by 
        adding at the end the following section:

``SEC. 417E. CANCER SURVIVORSHIP.

    ``(a) Expansion and Coordination of Research.--
            ``(1) In general.--The Director of NIH shall expand and 
        coordinate the activities of the National Institutes of Health 
        with respect to cancer survivorship research.
            ``(2) Priorities.--In carrying out this subsection, the 
        Director of NIH, in coordination with the Director of the 
        Centers for Disease Control and Prevention and nonprofit 
        organizations that focus on cancer survivorship, shall 
        establish cancer survivorship research priorities.
            ``(3) Collaboration.--In carrying out this subsection, the 
        Director of NIH may collaborate with such other agencies as the 
        Director determines appropriate.
    ``(b) Division of Cancer Survivorship.--
            ``(1) Establishment.--In carrying out subsection (a), the 
        Director of NIH shall establish a Division of Cancer 
        Survivorship within the National Cancer Institute through which 
        the research activities under subsection (a) shall be 
        implemented and directed.
            ``(2) Director; appointment.--The Director of NIH shall 
        appoint a Director to head the Division. The Director of the 
        Division shall be selected from among individuals who, because 
        of their professional training or experience, are equipped to 
        address the breadth of needs associated with cancer 
        survivorship.
            ``(3) Coordination.--The Director of NIH, acting through 
        the Director of the Division, shall coordinate and promote the 
        programs of the National Institutes of Health concerning cancer 
        survivorship research.
            ``(4) Definitions.--In this subsection:
                    ``(A) The term `Director of NIH' means the Director 
                of NIH, acting through the Director of the National 
                Cancer Institute.
                    ``(B) The term `Division' means the Division of 
                Cancer Survivorship established under paragraph (1).
    ``(c) NCI-Designated Cancer Centers.--
            ``(1) In general.--In carrying out subsection (a), the 
        Director of NIH shall provide for the expansion and 
        coordination of cancer survivorship research activities at 
        National Cancer Institute-designated cancer centers.
            ``(2) Comprehensive cancer survivorship centers.--
                    ``(A) In general.--The Director of NIH shall 
                provide assistance to National Cancer Institute-
                designated cancer centers for the purpose of 
                establishing or improving comprehensive cancer 
                survivorship centers described in subparagraph (B).
                    ``(B) Center description.--A comprehensive cancer 
                survivorship center described in this subparagraph is a 
                center within a National Cancer Institute-designated 
                cancer center designed to serve as a comprehensive, 
                one-stop source of information, care, and services for 
                cancer survivors, family members, and service 
                providers.
            ``(3) Evaluation of models of survivorship care.--The 
        Director of NIH shall provide assistance to one or more 
        National Cancer Institute-designated cancer centers for 
        research to evaluate models of survivorship care.
            ``(4) Definition.--In this subsection, the term `Director 
        of NIH' means the Director of NIH, acting through the Director 
        of the National Cancer Institute.''.
    (b) Funding.--Section 417B of the Public Health Service Act (42 
U.S.C. 285a-8) is amended by adding at the end the following 
subsection:
    ``(e) Cancer Survivorship Research.--Of the amounts appropriated 
for the National Cancer Institute for a fiscal year, the Director of 
the Institute shall reserve not less than $50,000,000 to the Division 
of Cancer Survivorship to carry out section 417E (other than section 
417E(c)).
    ``(f) NCI-Designated Cancer Centers.--For the purpose of carrying 
out section 417E(c), there are authorized to be appropriated 
$61,000,000 for each of fiscal years 2007 through 2011.''.

SEC. 5. NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM.

    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:

``SEC. 317T. NATIONAL COMPREHENSIVE CANCER CONTROL PROGRAM.

    ``(a) Expansion of Program.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, shall 
expand and update the National Comprehensive Cancer Control Program.
    ``(b) Implementation Grants.--
            ``(1) Authorization.--In carrying out the National 
        Comprehensive Cancer Control Program, the Secretary may make 
        grants to eligible entities to establish and implement plans 
        for an integrated and coordinated approach to reducing cancer 
        incidence, morbidity, and mortality through prevention, early 
        detection, treatment, rehabilitation, palliation, and quality-
        of-life interventions.
            ``(2) Submission of plans.--To seek a grant under this 
        subsection, an eligible entity shall submit a plan for an 
        integrated and coordinated approach to reducing cancer 
        incidence, morbidity, and mortality. Such plan shall--
                    ``(A) identify priorities, strategies, and programs 
                through which communities and their partners may pool 
                resources to reduce cancer risk, promote cancer 
                prevention, improve cancer detection, increase access 
                to health and social services, address disparities in 
                specific populations, improve cancer treatment, reduce 
                the burden of cancer, enhance quality of life for 
                cancer patients, and address survivorship needs; and
                    ``(B) provide for collection, evaluation, and 
                submission to the Secretary of data on the delivery and 
                quality of cancer care, screening and early detection 
                rates, and the quality of life for survivors and their 
                families.
            ``(3) Data analysis.--The Secretary shall analyze the data 
        submitted under this section to ensure that plans funded under 
        this subsection have a systematic, nationwide, positive impact 
        on the delivery and quality of cancer care, including by--
                    ``(A) increasing screening and early detection 
                rates; and
                    ``(B) improving the quality of life for cancer 
                survivors and their families.
            ``(4) Definition.--In this section, the term `eligible 
        entity' includes a State, a territory, a tribal organization, 
        and the District of Columbia.
    ``(c) Additional Activities.--In carrying out the National 
Comprehensive Cancer Control Program, in addition to making grants 
under subsection (b), the Secretary shall--
            ``(1) establish programs that demonstrate how to prevent 
        and control cancer and improve access to and the quality of 
        cancer care among racial and ethnic minority and medically 
        underserved populations with disproportionate incidence of or 
        death from cancer;
            ``(2) promote cancer education, prevention, and early 
        detection of cancer; and
            ``(3) award grants to public and nonprofit organizations 
        for cancer control and prevention.
    ``(d) Cancer Survivorship Grants.--In carrying out the National 
Comprehensive Cancer Control Program, in addition to the activities 
described in subsections (b) and (c) the Secretary may award grants to 
community-based programs, nonprofit organizations, and other entities 
for the purpose of providing programs and direct services to improve 
cancer survivorship and the quality of life of cancer survivors.
    ``(e) Certain Studies and Programs.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and Prevention and 
        in collaboration with the Director of the Division of Cancer 
        Survivorship in the National Cancer Institute, shall--
                    ``(A) study the unique health challenges associated 
                with cancer survivorship; and
                    ``(B) carry out (directly or through the award of 
                grants or contracts) projects and interventions to 
                improve the long-term health status of cancer 
                survivors.
            ``(2) Certain activities.--Activities under paragraph (1) 
        may include--
                    ``(A) the expansion, in collaboration with the 
                Surveillance, Epidemiology, and End Results (SEER) 
                Program at the National Cancer Institute, the National 
                Program of Cancer Registries at the Centers for Disease 
                Control and Prevention, and the Agency for Healthcare 
                Research and Quality, of current cancer surveillance 
                systems to track the health status of cancer survivors 
                and determine whether cancer survivors are at-risk for 
                other chronic and disabling conditions;
                    ``(B) the assessment of the unique public health 
                challenges associated with cancer survivorship; and
                    ``(C) the implementation and evaluation of the 
                national public health cancer survivorship action plan, 
                in partnership with health organizations focused on 
                cancer survivorship, to be carried out in coordination 
                with the State programs funded under subsection (b), in 
                collaboration with the Associate Director for Cancer 
                Survivorship, and in consultation with other 
                appropriate entities, to support and advance cancer 
                survivorship through--
                            ``(i) surveillance and research;
                            ``(ii) communication, education, and 
                        training;
                            ``(iii) program, policies, and 
                        infrastructure; and
                            ``(iv) access to quality care and services.
    ``(f) Coordination of Activities.--The Secretary shall assure that 
activities of the Centers for Disease Control and Prevention under this 
section are coordinated as appropriate with other agencies of the 
Public Health Service.
    ``(g) Report to Congress.--Not later than October 1, 2007, the 
Secretary shall submit to the Congress a report describing the results 
of activities carried out under this section.
    ``(h) Authorization of Appropriations.--There are authorized to be 
appropriated--
            ``(1) for purposes of this section (other than subsections 
        (b) and (d)), such sums as may be necessary for each of the 
        fiscal years 2007 through 2011;
            ``(2) for purposes of subsection (b), $50,000,000 for 
        fiscal year 2007 and a total of $200,000,000 for the period of 
        fiscal years 2008 through 2011; and
            ``(3) for purposes of subsection (d), $6,000,000 for fiscal 
        year 2007, $7,000,000 for fiscal year 2008, $8,000,000 for 
        fiscal year 2009, $9,000,000 for fiscal year 2010, and 
        $10,000,000 for fiscal year 2011.''.

SEC. 6. MONITORING AND EVALUATING QUALITY CANCER CARE AND CANCER 
              SURVIVORSHIP.

    (a) In General.--Part M of title III of the Public Health Service 
Act (42 U.S.C. 280e et seq.) is amended by inserting after section 399E 
the following section:

``SEC. 399E-1. MONITORING AND EVALUATING QUALITY CANCER CARE AND CANCER 
              SURVIVORSHIP.

    ``(a) In General.--The Secretary shall make grants to eligible 
entities for the purpose of enabling such entities to monitor and 
evaluate the quality of cancer care, develop information concerning the 
quality of cancer care, and monitor cancer survivorship. The Secretary 
shall carry out this section jointly through the Director of the 
Centers for Disease Control and Prevention and the Director of the 
National Cancer Institute.
    ``(b) Eligible Entities.--For purposes of this section, an entity 
is an eligible entity for a fiscal year if the entity--
            ``(1) operates a statewide cancer registry with funds from 
        a grant made under section 399B for such fiscal year;
            ``(2) is certified by the North American Association of 
        Central Cancer Registries;
            ``(3) has personnel scientifically qualified to conduct 
        population-based epidemiology or analyze health services or 
        outcomes research; and
            ``(4) has access to a broad-based clinical research cohort 
        or an established clinical case base.
    ``(c) Contracting Authority.--In carrying out the purpose described 
in subsection (a), an eligible entity may expend a grant under such 
subsection to enter into contracts with academic institutions, cancer 
centers, and other entities, when determined appropriate by the 
Secretary.
    ``(d) Application for Grant.--A grant may be made under subsection 
(a) only if an application for the grant is submitted to the Secretary 
and the application is in such form, is made in such manner, and 
contains such agreements, assurances, and information as the Secretary 
determines to be necessary to carry out this section.
    ``(e) Authority of Secretary Regarding Use of Grant.--The Secretary 
shall determine the appropriate uses of grants under subsection (a) to 
achieve the purpose described in such subsection.
    ``(f) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $5,000,000 
for each of the fiscal years 2007 through 2011.''.
    (b) Conforming Amendment Regarding Authorization of 
Appropriations.--Section 399F(a) of the Public Health Service Act (42 
U.S.C. 280e-4(a)) is amended in the first sentence by striking ``this 
part,'' and inserting ``this part (other than section 399E-1),''.

SEC. 7. NATIONAL COMMISSION ON CANCER SURVIVORSHIP.

    (a) In General.--The Secretary of Health and Human Services shall 
establish a National Commission on Cancer Survivorship (referred to in 
this section as the ``Commission'') to coordinate the activities of the 
Department of Health and Human Services related to cancer survivorship 
with such activities of other governmental agencies and private 
entities.
    (b) Composition.--The Commission shall consist of not more than 15 
members to be appointed by the Secretary, of which--
            (1) \2/3\ of such members shall be representatives of 
        governmental agencies conducting activities with respect to 
        cancer survivorship, including the National Institutes of 
        Health, the National Cancer Institute, the Centers for Disease 
        Control and Prevention, the Centers for Medicare & Medicaid 
        Services, the Health Resources and Services Administration, the 
        Agency for the Healthcare Research and Quality, the Department 
        of Defense, and the Department of Veterans Affairs; and
            (2) \1/3\ of such members shall be representatives of 
        private organizations and patient representatives.
    (c) Terms.--
            (1) In general.--Except as provided in paragraphs (2) and 
        (3), members of the Commission shall be appointed for a term of 
        3 years, and may serve an unlimited number of terms if 
        reappointed.
            (2) Terms of initial appointees.--As designated by the 
        Secretary at the time of appointment, of the 15 members first 
        appointed--
                    (A) 5 shall be appointed for a term of 3 years;
                    (B) 5 shall be appointed for a term of 4 years; and
                    (C) 5 shall be appointed for a term of 5 years.
            (3) Vacancies.--Any member of the Commission appointed to 
        fill a vacancy occurring before the expiration of the term for 
        which the member's predecessor was appointed shall be appointed 
        only for the remainder of that term. A member may serve after 
        the expiration of that member's term until a successor has 
        taken office.
    (d) Chair.--The Chair of the Commission shall be appointed by the 
Secretary of Health and Human Services from among the 15 members of the 
Commission. The Chair of the Commission shall be directly responsible 
to the Secretary. The Chair of the Commission shall be appointed for a 
term of 2 years and may be reappointed.
    (e) Annual Report.--The Commission shall prepare an annual report 
to Congress on cancer survivorship--
            (1) identifying cross-agency activities and public-private 
        partnerships that support or improve cancer survivorship; and
            (2) listing existing and ongoing gaps in care for cancer 
        survivors.
    (f) Administrative Support; Terms of Service; Other Provisions.--
The following shall apply with respect to the Commission:
            (1) The Commission shall receive necessary and appropriate 
        administrative support from the Department of Health and Human 
        Services.
            (2) The Commission shall meet as determined appropriate by 
        the Secretary, in consultation with the Chair of the 
        Commission, but not less than 3 times each year.
                                 <all>
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