109 HR 5390 IH: Cancer Survivorship Research and U.S. House of Representatives 2006-05-16 text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.

I 109th CONGRESS 2d Session H. R. 5390 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.

1.

Short title

This Act may be cited as the Cancer Survivorship Research and Quality of Life Act of 2006.

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.

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.

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:

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. .

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:

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.

.

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:

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),.

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.