I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Cancer Survivorship 

5 Research and Quality of Life Act of 2006’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds as follows: 


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1 (1) There are more than 10 million cancer sur2 vivors (those living with, through, and beyond can3 cer) in the United States. 

4 (2) One out of two men and one out of three 

5 women will receive a cancer diagnosis during their 

6 lifetime. 

7 (3) One of every four deaths in the United 

8 States is from cancer. In 2005, 570,000 Americans, 

9 or more than 1,500 a day, will die from cancer. 

10 (4) Despite the significant annual burden of 

11 cancer deaths, improvements in detection and treat12 ment have prolonged the lives of many cancer sur13 vivors or resulted in cures for others. As a result of 

14 these developments, the number of survivors con15 tinues to grow. 

16 (5) More than three-fifths of adults diagnosed 

17 with cancer today will be alive five years from now. 

18 (6) In 1960, only four percent of children with 

19 cancer survived more than five years, but treatment 

20 advances have changed the outlook for many chil21 dren diagnosed with cancer. 

22 (7) The five-year survival rate for children with 

23 cancer improved from 56 percent for those diag24 nosed between 1974 and 1976 to 79 percent for 

25 those diagnosed between 1995 and 2000. 


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1 (8) The size of the population of survivors of 

2 childhood cancers has grown dramatically, to 

3 270,000 individuals of all ages as of 1997, which 

4 means that 1 in 640 adults from age 20 to 39 has 

5 a history of cancer. 

6 (9) Adults who are treated for cancer may have 

7 complex and long-term effects from their treatment, 

8 resulting in unique health care needs. 

9 (10) Some effects of treatment may be experi10 enced at the time of treatment or soon after, while 

11 others may not be noticed until the patient ages or 

12 develops other health conditions. 

13 (11) As many as two-thirds of childhood cancer 

14 survivors are likely to experience at least one late ef15 fect of treatment, with as many as one-fourth expe16 riencing a late effect that is serious or life-threat17 ening. 

18 (12) Some late effects are identified early in 

19 follow-up and are easily resolved, while others may 

20 become chronic problems in adulthood and may have 

21 serious consequences. 

22 (13) The late effects of treatment may change 

23 as treatments evolve, which means that the moni24 toring and treatment of late effects may need to be 

25 modified on a routine basis. 


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1 (14) The Institute of Medicine, in its reports on 

2 cancer survivorship entitled ‘‘Childhood Cancer Sur3 vivorship: Improving Care and Quality of Life’’ and 

4 ‘‘From Cancer Patient to Cancer Survivor: Lost in 

5 Transition,’’ has offered a number of recommenda6 tions for improving the monitoring and follow-up 

7 care for cancer survivors and enhancing the cancer 

8 survivorship research agenda. 

9 (15) The Institute of Medicine has also noted 

10 the significant health insurance problems that may 

11 be experienced by survivors of childhood cancer as 

12 well as adult cancer survivors and has recommended 

13 that policy makers take action to ensure access to 

14 care, including appropriate follow-up care, by all 

15 cancer survivors. 

16 (16) The annual cost of cancer in the United 

17 States is almost $190 billion in direct and indirect 

18 costs. 

19 SEC. 3. CANCER CONTROL PROGRAMS. 

20 Section 412 of the Public Health Service Act (42 

21 U.S.C. 285a–1) is amended— 

22 (1) in the first sentence, by inserting ‘‘, for sur23 vivorship,’’ after ‘‘treatment of cancer’’; 

24 (2) in paragraph (1)(B), by striking ‘‘cancer 

25 patients’’ and all that follows and inserting ‘‘cancer 


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1 patients, families of cancer patients, and cancer sur2 vivors; and’’; and 

3 (3) in paragraph (3), by inserting ‘‘and con4 cerning cancer survivorship programs,’’ after ‘‘con5 trol of cancer’’. 

6 SEC. 4. EXPANSION AND COORDINATION OF ACTIVITIES OF 

7 NATIONAL INSTITUTES OF HEALTH WITH RE8 SPECT TO CANCER SURVIVORSHIP RE9 SEARCH. 

10 (a) IN GENERAL.— 

11 (1) TECHNICAL AMENDMENT.—Section 3 of 

12 Public Law 107–172 (116 Stat. 541) is amended by 

13 striking ‘‘section 419C’’ and inserting ‘‘section 

14 417C’’. 

15 (2) NEW SECTION.—Subpart 1 of part C of 

16 title IV of the Public Health Service Act (42 U.S.C. 

17 285 et seq.), as amended pursuant to paragraph (1) 

18 of this subsection, is amended by adding at the end 

19 the following section: 

20 ‘‘SEC. 417E. CANCER SURVIVORSHIP. 

21 ‘‘(a) EXPANSION AND COORDINATION OF RE22 SEARCH.— 

23 ‘‘(1) IN GENERAL.—The Director of NIH shall 

24 expand and coordinate the activities of the National 


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1 Institutes of Health with respect to cancer survivor2 ship research. 

3 ‘‘(2) PRIORITIES.—In carrying out this sub4 section, the Director of NIH, in coordination with 

5 the Director of the Centers for Disease Control and 

6 Prevention and nonprofit organizations that focus on 

7 cancer survivorship, shall establish cancer survivor8 ship research priorities. 

9 ‘‘(3) COLLABORATION.—In carrying out this 

10 subsection, the Director of NIH may collaborate 

11 with such other agencies as the Director determines 

12 appropriate. 

13 ‘‘(b) DIVISION OF CANCER SURVIVORSHIP.— 

14 ‘‘(1) ESTABLISHMENT.—In carrying out sub15 section (a), the Director of NIH shall establish a Di16 vision of Cancer Survivorship within the National 

17 Cancer Institute through which the research activi18 ties under subsection (a) shall be implemented and 

19 directed. 

20 ‘‘(2) DIRECTOR; APPOINTMENT.—The Director 

21 of NIH shall appoint a Director to head the Divi22 sion. The Director of the Division shall be selected 

23 from among individuals who, because of their profes24 sional training or experience, are equipped to adVerDate Aug 31 2005 00:31 May 20, 2006 Jkt 049200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H5390.IH H5390

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1 dress the breadth of needs associated with cancer 

2 survivorship. 

3 ‘‘(3) COORDINATION.—The Director of NIH, 

4 acting through the Director of the Division, shall co5 ordinate and promote the programs of the National 

6 Institutes of Health concerning cancer survivorship 

7 research. 

8 ‘‘(4) DEFINITIONS.—In this subsection: 

9 ‘‘(A) The term ‘Director of NIH’ means 

10 the Director of NIH, acting through the Direc11 tor of the National Cancer Institute. 

12 ‘‘(B) The term ‘Division’ means the Divi13 sion of Cancer Survivorship established under 

14 paragraph (1). 

15 ‘‘(c) NCI-DESIGNATED CANCER CENTERS.— 

16 ‘‘(1) IN GENERAL.—In carrying out subsection 

17 (a), the Director of NIH shall provide for the expan18 sion and coordination of cancer survivorship re19 search activities at National Cancer Institute-des20 ignated cancer centers. 

21 ‘‘(2) COMPREHENSIVE CANCER SURVIVORSHIP

22 CENTERS.— 

23 ‘‘(A) IN GENERAL.—The Director of NIH 

24 shall provide assistance to National Cancer In25 stitute-designated cancer centers for the purVerDate Aug 31 2005 00:31 May 20, 2006 Jkt 049200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H5390.IH H5390

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1 pose of establishing or improving comprehensive 

2 cancer survivorship centers described in sub3 paragraph (B). 

4 ‘‘(B) CENTER DESCRIPTION.—A com5 prehensive cancer survivorship center described 

6 in this subparagraph is a center within a Na7 tional Cancer Institute-designated cancer center 

8 designed to serve as a comprehensive, one-stop 

9 source of information, care, and services for 

10 cancer survivors, family members, and service 

11 providers. 

12 ‘‘(3) EVALUATION OF MODELS OF SURVIVOR13 SHIP CARE.—The Director of NIH shall provide as14 sistance to one or more National Cancer Institute15 designated cancer centers for research to evaluate 

16 models of survivorship care. 

17 ‘‘(4) DEFINITION.—In this subsection, the term 

18 ‘Director of NIH’ means the Director of NIH, act19 ing through the Director of the National Cancer In20 stitute.’’. 

21 (b) FUNDING.—Section 417B of the Public Health 

22 Service Act (42 U.S.C. 285a–8) is amended by adding at 

23 the end the following subsection: 

24 ‘‘(e) CANCER SURVIVORSHIP RESEARCH.—Of the 

25 amounts appropriated for the National Cancer Institute 


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1 for a fiscal year, the Director of the Institute shall reserve 

2 not less than $50,000,000 to the Division of Cancer Survi3 vorship to carry out section 417E (other than section 

4 417E(c)). 

5 ‘‘(f) NCI-DESIGNATED CANCER CENTERS.—For the 

6 purpose of carrying out section 417E(c), there are author7 ized to be appropriated $61,000,000 for each of fiscal 

8 years 2007 through 2011.’’. 

9 SEC. 5. NATIONAL COMPREHENSIVE CANCER CONTROL 

10 PROGRAM. 

11 Part B of title III of the Public Health Service Act 

12 (42 U.S.C. 243 et seq.) is amended by inserting after sec13 tion 317S the following: 

14 ‘‘SEC. 317T. NATIONAL COMPREHENSIVE CANCER CONTROL 

15 PROGRAM. 

16 ‘‘(a) EXPANSION OF PROGRAM.—The Secretary, act17 ing through the Director of the Centers for Disease Con18 trol and Prevention, shall expand and update the National 

19 Comprehensive Cancer Control Program. 

20 ‘‘(b) IMPLEMENTATION GRANTS.— 

21 ‘‘(1) AUTHORIZATION.—In carrying out the Na22 tional Comprehensive Cancer Control Program, the 

23 Secretary may make grants to eligible entities to es24 tablish and implement plans for an integrated and 

25 coordinated approach to reducing cancer incidence, 


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1 morbidity, and mortality through prevention, early 

2 detection, treatment, rehabilitation, palliation, and 

3 quality-of-life interventions. 

4 ‘‘(2) SUBMISSION OF PLANS.—To seek a grant 

5 under this subsection, an eligible entity shall submit 

6 a plan for an integrated and coordinated approach 

7 to reducing cancer incidence, morbidity, and mor8 tality. Such plan shall— 

9 ‘‘(A) identify priorities, strategies, and pro10 grams through which communities and their 

11 partners may pool resources to reduce cancer 

12 risk, promote cancer prevention, improve cancer 

13 detection, increase access to health and social 

14 services, address disparities in specific popu15 lations, improve cancer treatment, reduce the 

16 burden of cancer, enhance quality of life for 

17 cancer patients, and address survivorship needs; 

18 and 

19 ‘‘(B) provide for collection, evaluation, and 

20 submission to the Secretary of data on the de21 livery and quality of cancer care, screening and 

22 early detection rates, and the quality of life for 

23 survivors and their families. 

24 ‘‘(3) DATA ANALYSIS.—The Secretary shall 

25 analyze the data submitted under this section to enVerDate Aug 31 2005 00:31 May 20, 2006 Jkt 049200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H5390.IH H5390

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1 sure that plans funded under this subsection have a 

2 systematic, nationwide, positive impact on the deliv3 ery and quality of cancer care, including by— 

4 ‘‘(A) increasing screening and early detec5 tion rates; and 

6 ‘‘(B) improving the quality of life for can7 cer survivors and their families. 

8 ‘‘(4) DEFINITION.—In this section, the term 

9 ‘eligible entity’ includes a State, a territory, a tribal 

10 organization, and the District of Columbia. 

11 ‘‘(c) ADDITIONAL ACTIVITIES.—In carrying out the 

12 National Comprehensive Cancer Control Program, in ad13 dition to making grants under subsection (b), the Sec14 retary shall— 

15 ‘‘(1) establish programs that demonstrate how 

16 to prevent and control cancer and improve access to 

17 and the quality of cancer care among racial and eth18 nic minority and medically underserved populations 

19 with disproportionate incidence of or death from 

20 cancer; 

21 ‘‘(2) promote cancer education, prevention, and 

22 early detection of cancer; and 

23 ‘‘(3) award grants to public and nonprofit orga24 nizations for cancer control and prevention. 


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1 ‘‘(d) CANCER SURVIVORSHIP GRANTS.—In carrying 

2 out the National Comprehensive Cancer Control Program, 

3 in addition to the activities described in subsections (b) 

4 and (c) the Secretary may award grants to community5 based programs, nonprofit organizations, and other enti6 ties for the purpose of providing programs and direct serv7 ices to improve cancer survivorship and the quality of life 

8 of cancer survivors. 

9 ‘‘(e) CERTAIN STUDIES AND PROGRAMS.— 

10 ‘‘(1) IN GENERAL.—The Secretary, acting 

11 through the Director of the Centers for Disease 

12 Control and Prevention and in collaboration with the 

13 Director of the Division of Cancer Survivorship in 

14 the National Cancer Institute, shall— 

15 ‘‘(A) study the unique health challenges 

16 associated with cancer survivorship; and 

17 ‘‘(B) carry out (directly or through the 

18 award of grants or contracts) projects and 

19 interventions to improve the long-term health 

20 status of cancer survivors. 

21 ‘‘(2) CERTAIN ACTIVITIES.—Activities under 

22 paragraph (1) may include— 

23 ‘‘(A) the expansion, in collaboration with 

24 the Surveillance, Epidemiology, and End Re25 sults (SEER) Program at the National Cancer 


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1 Institute, the National Program of Cancer Reg2 istries at the Centers for Disease Control and 

3 Prevention, and the Agency for Healthcare Re4 search and Quality, of current cancer surveil5 lance systems to track the health status of can6 cer survivors and determine whether cancer sur7 vivors are at-risk for other chronic and dis8 abling conditions; 

9 ‘‘(B) the assessment of the unique public 

10 health challenges associated with cancer survi11 vorship; and 

12 ‘‘(C) the implementation and evaluation of 

13 the national public health cancer survivorship 

14 action plan, in partnership with health organi15 zations focused on cancer survivorship, to be 

16 carried out in coordination with the State pro17 grams funded under subsection (b), in collabo18 ration with the Associate Director for Cancer 

19 Survivorship, and in consultation with other ap20 propriate entities, to support and advance can21 cer survivorship through— 

22 ‘‘(i) surveillance and research; 

23 ‘‘(ii) communication, education, and 

24 training; 


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1 ‘‘(iii) program, policies, and infra2 structure; and 

3 ‘‘(iv) access to quality care and serv4 ices. 

5 ‘‘(f) COORDINATION OF ACTIVITIES.—The Secretary 

6 shall assure that activities of the Centers for Disease Con7 trol and Prevention under this section are coordinated as 

8 appropriate with other agencies of the Public Health Serv9 ice. 

10 ‘‘(g) REPORT TO CONGRESS.—Not later than October 

11 1, 2007, the Secretary shall submit to the Congress a re12 port describing the results of activities carried out under 

13 this section. 

14 ‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—There 

15 are authorized to be appropriated— 

16 ‘‘(1) for purposes of this section (other than 

17 subsections (b) and (d)), such sums as may be nec18 essary for each of the fiscal years 2007 through 

19 2011; 

20 ‘‘(2) for purposes of subsection (b), 

21 $50,000,000 for fiscal year 2007 and a total of 

22 $200,000,000 for the period of fiscal years 2008 

23 through 2011; and 

24 ‘‘(3) for purposes of subsection (d), $6,000,000 

25 for fiscal year 2007, $7,000,000 for fiscal year 


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1 2008, $8,000,000 for fiscal year 2009, $9,000,000 

2 for fiscal year 2010, and $10,000,000 for fiscal year 

3 2011.’’. 

4 SEC. 6. MONITORING AND EVALUATING QUALITY CANCER 

5 CARE AND CANCER SURVIVORSHIP. 

6 (a) IN GENERAL.—Part M of title III of the Public 

7 Health Service Act (42 U.S.C. 280e et seq.) is amended 

8 by inserting after section 399E the following section: 

9 ‘‘SEC. 399E–1. MONITORING AND EVALUATING QUALITY 

10 CANCER CARE AND CANCER SURVIVORSHIP. 

11 ‘‘(a) IN GENERAL.—The Secretary shall make grants 

12 to eligible entities for the purpose of enabling such entities 

13 to monitor and evaluate the quality of cancer care, develop 

14 information concerning the quality of cancer care, and 

15 monitor cancer survivorship. The Secretary shall carry out 

16 this section jointly through the Director of the Centers 

17 for Disease Control and Prevention and the Director of 

18 the National Cancer Institute. 

19 ‘‘(b) ELIGIBLE ENTITIES.—For purposes of this sec20 tion, an entity is an eligible entity for a fiscal year if the 

21 entity— 

22 ‘‘(1) operates a statewide cancer registry with 

23 funds from a grant made under section 399B for 

24 such fiscal year; 


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1 ‘‘(2) is certified by the North American Asso2 ciation of Central Cancer Registries; 

3 ‘‘(3) has personnel scientifically qualified to 

4 conduct population-based epidemiology or analyze 

5 health services or outcomes research; and 

6 ‘‘(4) has access to a broad-based clinical re7 search cohort or an established clinical case base. 

8 ‘‘(c) CONTRACTING AUTHORITY.—In carrying out the 

9 purpose described in subsection (a), an eligible entity may 

10 expend a grant under such subsection to enter into con11 tracts with academic institutions, cancer centers, and 

12 other entities, when determined appropriate by the Sec13 retary. 

14 ‘‘(d) APPLICATION FOR GRANT.—A grant may be 

15 made under subsection (a) only if an application for the 

16 grant is submitted to the Secretary and the application 

17 is in such form, is made in such manner, and contains 

18 such agreements, assurances, and information as the Sec19 retary determines to be necessary to carry out this section. 

20 ‘‘(e) AUTHORITY OF SECRETARY REGARDING USE OF

21 GRANT.—The Secretary shall determine the appropriate 

22 uses of grants under subsection (a) to achieve the purpose 

23 described in such subsection. 

24 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—For the 

25 purpose of carrying out this section, there are authorized 


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1 to be appropriated $5,000,000 for each of the fiscal years 

2 2007 through 2011.’’. 

3 (b) CONFORMING AMENDMENT REGARDING AU4 THORIZATION OF APPROPRIATIONS.—Section 399F(a) of 

5 the Public Health Service Act (42 U.S.C. 280e–4(a)) is 

6 amended in the first sentence by striking ‘‘this part,’’ and 

7 inserting ‘‘this part (other than section 399E–1),’’. 

8 SEC. 7. NATIONAL COMMISSION ON CANCER SURVIVOR9 SHIP. 

10 (a) IN GENERAL.—The Secretary of Health and 

11 Human Services shall establish a National Commission on 

12 Cancer Survivorship (referred to in this section as the 

13 ‘‘Commission’’) to coordinate the activities of the Depart14 ment of Health and Human Services related to cancer sur15 vivorship with such activities of other governmental agen16 cies and private entities. 

17 (b) COMPOSITION.—The Commission shall consist of 

18 not more than 15 members to be appointed by the Sec19 retary, of which— 

(1) 2 20 ⁄3 of such members shall be representatives 

21 of governmental agencies conducting activities with 

22 respect to cancer survivorship, including the Na23 tional Institutes of Health, the National Cancer In24 stitute, the Centers for Disease Control and Preven25 tion, the Centers for Medicare & Medicaid Services, 


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1 the Health Resources and Services Administration, 

2 the Agency for the Healthcare Research and Qual3 ity, the Department of Defense, and the Department 

4 of Veterans Affairs; and 

(2) 1 5 ⁄3 of such members shall be representatives 

6 of private organizations and patient representatives. 

7 (c) TERMS.— 

8 (1) IN GENERAL.—Except as provided in para9 graphs (2) and (3), members of the Commission 

10 shall be appointed for a term of 3 years, and may 

11 serve an unlimited number of terms if reappointed. 

12 (2) TERMS OF INITIAL APPOINTEES.—As des13 ignated by the Secretary at the time of appointment, 

14 of the 15 members first appointed— 

15 (A) 5 shall be appointed for a term of 3 

16 years; 

17 (B) 5 shall be appointed for a term of 4 

18 years; and 

19 (C) 5 shall be appointed for a term of 5 

20 years. 

21 (3) VACANCIES.—Any member of the Commis22 sion appointed to fill a vacancy occurring before the 

23 expiration of the term for which the member’s pred24 ecessor was appointed shall be appointed only for 

25 the remainder of that term. A member may serve 


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1 after the expiration of that member’s term until a 

2 successor has taken office. 

3 (d) CHAIR.—The Chair of the Commission shall be 

4 appointed by the Secretary of Health and Human Services 

5 from among the 15 members of the Commission. The 

6 Chair of the Commission shall be directly responsible to 

7 the Secretary. The Chair of the Commission shall be ap8 pointed for a term of 2 years and may be reappointed. 

9 (e) ANNUAL REPORT.—The Commission shall pre10 pare an annual report to Congress on cancer survivor11 ship— 

12 (1) identifying cross-agency activities and pub13 lic-private partnerships that support or improve can14 cer survivorship; and 

15 (2) listing existing and ongoing gaps in care for 

16 cancer survivors. 

17 (f) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; 

18 OTHER PROVISIONS.—The following shall apply with re19 spect to the Commission: 

20 (1) The Commission shall receive necessary and 

21 appropriate administrative support from the Depart22 ment of Health and Human Services. 

23 (2) The Commission shall meet as determined 

24 appropriate by the Secretary, in consultation with 


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1 the Chair of the Commission, but not less than 3 

2 times each year. 

Æ 


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