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.

July 30 (legislative day, July 21), 2003

Mrs. HUTCHISON (for herself, Mr. Kennedy, Mrs. Feinstein, and Mr. Harkin) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions

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 2003'.

SEC. 2. FINDINGS.

The Congress finds as follows:

(1) There are more than 9,600,000 individuals in the United States today who are cancer survivors (living with, through, and beyond cancer).

(2) 61 percent of cancer survivors are 65 years of age and older.

(3) 62 percent of adults diagnosed with cancer today will be alive 5 years from now.

(4) In 1960, 4 percent of children with cancer survived more than 5 years.

(5) 77 percent of children (age 0 through 14) diagnosed with cancer today will be living five years from now.

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

(7) 24 percent of adults with cancer are parents who have a child 18 years or younger living in the home.

(8) One of every four deaths in the United States is from cancer. In 2002, 556,500 Americans will die of cancer--more than 1,500 people a day.

(9) The annual cost of cancer in the United States is $180,000,000,000 in direct and indirect costs.

(10) In fiscal year 2001 the National Institutes of Health invested $38,000,000 in survivorship--less than $4.25 per survivor.

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 the following: `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:

`SEC. 417E. EXPANSION AND COORDINATION OF ACTIVITIES WITH RESPECT TO CANCER SURVIVORSHIP RESEARCH.

`(a) IN GENERAL-

`(1) EXPANSION OF ACTIVITIES- The Director of NIH shall expand and coordinate the activities of the National Institutes of Health with respect to cancer survivorship research.

`(2) ADMINISTRATION OF PROGRAM; COLLABORATION AMONG AGENCIES- The Director of NIH shall carry out this section acting through the Director of the National Cancer Institute and in collaboration with any other agencies that the Director determines appropriate.

`(b) OFFICE ON SURVIVORSHIP-

`(1) IN GENERAL- The Director of NIH shall establish an Office on Cancer Survivorship within the National Cancer Institute through which the activities under subsection (a)(1) shall be implemented and directed.

`(2) ASSOCIATE DIRECTOR FOR CANCER SURVIVORSHIP; APPOINTMENT; FUNCTION- There shall be in the National Cancer Institute an Associate Director for Cancer Survivorship to coordinate and promote the programs in the Institute concerning cancer survivorship research. The Associate Director shall be appointed by the Director of the Institute from among individuals who, because of their professional training or experience, are equipped to address the breadth of needs associated with cancer survivorship.'.

(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:

`(e) OFFICE ON CANCER SURVIVORSHIP- Of the amounts appropriated for the National Cancer Institute for a fiscal year, the Director of the Institute shall reserve an amount for the Office of Cancer Survivorship under section 417E(b)(1).'.

SEC. 5. EXPANSION OF CDC COMPREHENSIVE CANCER PROGRAMS; PROGRAMS TO IMPROVE CANCER SURVIVORSHIP.

(a) IN GENERAL- The Secretary of Health and Human Services (referred to in this section as the

`Secretary'), acting through the Director of the Centers for Disease Control and Prevention, shall--

(1) expand and update the National Comprehensive Cancer Control Program;

(2) assist States, territories, tribal organizations, and the District of Columbia in developing and implementing a cancer prevention and control program so that each entity will have an active plan in place and so that States, territories, tribal organizations, and the District of Columbia will conduct activities to prevent and control cancer and so that disparities in specific populations will be addressed;

(3) 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;

(4) promote cancer education, prevention, and early detection of cancer; and

(5) award grants to public and nonprofit organizations for cancer control and prevention.

(b) 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 Office of Cancer Survivorship within the National Cancer Institute, shall study the unique health challenges associated with cancer survivorship and carry out projects and interventions to improve the long-term health status of cancer survivors. Such projects shall be carried out directly and through the awards of grants or contracts.

(2) CERTAIN ACTIVITIES- Activities under paragraph (1) include--

(A) the expansion, in collaboration with the Surveillance, Epidemiology, and End Results Program (SEER) at the National Cancer Institute and with 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) assess the unique public health challenges associated with cancer survivorship; and

(C) the development and implementation of a 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-based comprehensive cancer control program of the Centers for Disease Control and Prevention, in collaboration with the Office of Cancer Survivorship at the National Cancer Institute, 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.

(c) COORDINATION OF ACTIVITIES- The Secretary shall assure that activities under this section are coordinated as appropriate with other agencies of the Public Health Service.

(d) REPORT TO CONGRESS- Not later than October 1, 2004, the Secretary shall submit to the Congress a report describing the results of the evaluation under subsection (a), and as applicable, the strategies developed under such subsection.

(e) AUTHORIZATION OF APPROPRIATIONS- For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of the fiscal years 2004 through 2008.

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:

`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 quality cancer care, develop information concerning quality 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 such sums as may be necessary for each of the fiscal years 2004 through 2008.'.

(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),'.

END