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Union Calendar No. 448 

110TH CONGRESS 

2D SESSION H. R. 1553 

[Report No. 110–706] 

To amend the Public Health Service Act to advance medical research and 

treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, 

and promote public awareness of pediatric cancers. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 15, 2007 

Ms. PRYCE of Ohio (for herself, Mr. VAN HOLLEN, Mr. MCCAUL of Texas, 

Mr. SESTAK, Mr. FERGUSON, Mr. CASTLE, Mr. YARMUTH, Mr. 

REICHERT, Mr. HASTINGS of Florida, Mr. SCHIFF, Mr. MICA, Mr. 

RUPPERSBERGER, Mrs. MUSGRAVE, Mr. LARSEN of Washington, Mr. 

GRAVES, Mr. PLATTS, Mr. CULBERSON, Mr. ENGEL, Mr. HIGGINS, Mr. 

BOUCHER, Mr. MORAN of Virginia, Mr. REYES, Mr. KILDEE, Mr. 

DREIER, Mr. CHANDLER, Mr. SESSIONS, Mr. GRIJALVA, Mr. SHUSTER, 

Mr. AL GREEN of Texas, and Mr. FORBES) introduced the following bill; 

which was referred to the Committee on Energy and Commerce 

JUNE 10, 2008 

Additional sponsors: Mr. GENE GREEN of Texas, Mr. ROGERS of Kentucky, 

Mr. CAPUANO, Mr. GERLACH, Mr. MOORE of Kansas, Mr. 

FORTENBERRY, Mr. DOYLE, Mr. TERRY, Mr. WEXLER, Mr. KENNEDY, 

Mrs. BOYDA of Kansas, Mr. HOLDEN, Mr. PICKERING, Mr. MCCOTTER, 

Mr. MARSHALL, Mr. PATRICK J. MURPHY of Pennsylvania, Mr. WOLF, 

Mr. TOM DAVIS of Virginia, Mr. EDWARDS, Mr. ETHERIDGE, Ms. SUTTON, Ms. MATSUI, Mr. UPTON, Mrs. JO ANN DAVIS of Virginia, Mr. 

WAXMAN, Mr. MARKEY, Mr. ROTHMAN, Mr. WILSON of South Carolina, 

Mr. WICKER, Mr. MORAN of Kansas, Mr. MCGOVERN, Mr. DELAHUNT, 

Mr. DOOLITTLE, Mr. ALLEN, Mrs. DRAKE, Mr. PETERSON of Minnesota, 

Mr. HINOJOSA, Mr. GONZALEZ, Mr. BURTON of Indiana, Mr. CUELLAR, 

Mr. CANTOR, Mr. MEEHAN, Mr. WU, Mr. ALEXANDER, Mr. GORDON of 

Tennessee, Mr. LATHAM, Mr. CRAMER, Mr. WHITFIELD of Kentucky, Mr. 

ALTMIRE, Mr. LEWIS of Kentucky, Mr. OLVER, Mr. WYNN, Mr. BOSVerDate Aug 31 2005 00:43 Jun 11, 2008 Jkt 069200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6652 E:\BILLS\H1553.RH H1553

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WELL, Ms. BERKLEY, Mrs. MYRICK, Mr. PORTER, Mr. LANGEVIN, Mr. 

SIRES, Mr. RODRIGUEZ, Mr. SAXTON, Mr. ORTIZ, Mrs. JONES of Ohio, 

Mr. CUMMINGS, Mr. RUSH, Mr. NEAL of Massachusetts, Mr. BISHOP of 

Georgia, Ms. LORETTA SANCHEZ of California, Mr. HOLT, Mr. BRALEY

of Iowa, Ms. EDDIE BERNICE JOHNSON of Texas, Mr. LYNCH, Mr. 

WAMP, Mr. MCDERMOTT, Mr. TIBERI, Mr. PRICE of North Carolina, Mr. 

JINDAL, Mr. BARROW, Mr. DAVIS of Illinois, Mr. FATTAH, Mr. FRANK

of Massachusetts, Mr. DAVIS of Kentucky, Ms. GRANGER, Ms. SOLIS, 

Mrs. MALONEY of New York, Mr. BRADY of Texas, Mr. RAHALL, Mr. 

ABERCROMBIE, Mr. WELCH of Vermont, Mr. KLEIN of Florida, Mr. 

SCOTT of Virginia, Mr. FILNER, Ms. ESHOO, Mr. GEORGE MILLER of 

California, Ms. HIRONO, Mr. HALL of Texas, Mrs. WILSON of New Mexico, Ms. KILPATRICK, Ms. MOORE of Wisconsin, Mrs. CAPPS, Mr. 

ISRAEL, Mr. FOSSELLA, Mr. KING of Iowa, Mr. LAMPSON, Mr. 

LOBIONDO, Mr. ELLISON, Ms. SCHAKOWSKY, Mr. LEWIS of Georgia, Mr. 

BARRETT of South Carolina, Mr. SHULER, Mr. KING of New York, Ms. 

ROS-LEHTINEN, Ms. ZOE LOFGREN of California, Mrs. LOWEY, Mr. 

BONNER, Mr. BERMAN, Ms. BALDWIN, Mr. PERLMUTTER, Ms. JACKSONLEE of Texas, Mr. LANTOS, Mr. BLUMENAUER, Mr. CLAY, Mr. 

GALLEGLY, Mr. JOHNSON of Georgia, Mr. TURNER, Ms. DEGETTE, Mr. 

MURTHA, Mrs. MCCARTHY of New York, Mr. DOGGETT, Mr. COLE of 

Oklahoma, Mr. MATHESON, Mr. LUCAS, Mr. SPRATT, Mr. BACHUS, Ms. 

FALLIN, Mr. JEFFERSON, Ms. BORDALLO, Mr. COHEN, Mr. ROSKAM, 

Mr. CALVERT, Mr. COURTNEY, Mr. YOUNG of Alaska, Mr. DUNCAN, Mr. 

WELDON of Florida, Mr. HARE, Mr. HONDA, Mr. CLYBURN, Mr. 

MELANCON, Mr. WALZ of Minnesota, Mr. OBERSTAR, Mr. KAGEN, Mr. 

HINCHEY, Mr. DAVID DAVIS of Tennessee, Mr. LATOURETTE, Mr. ANDREWS, Mr. BARTLETT of Maryland, Mr. SERRANO, Mr. RAMSTAD, Ms. 

WOOLSEY, Mr. MITCHELL, Mr. RYAN of Ohio, Mr. BOOZMAN, Mr. 

GILCHREST, Mr. WESTMORELAND, Mr. ADERHOLT, Mr. JACKSON of Illinois, Mr. GINGREY, Ms. WASSERMAN SCHULTZ, Mrs. EMERSON, Mr. BUCHANAN, Mr. UDALL of Colorado, Mrs. CUBIN, Mrs. GILLIBRAND, Mr. 

PASTOR, Mr. NADLER, Mrs. BLACKBURN, Mr. FRELINGHUYSEN, Mr. 

INSLEE, Mr. BROWN of South Carolina, Ms. MCCOLLUM of Minnesota, 

Mrs. BIGGERT, Mr. EMANUEL, Mr. TIERNEY, Mr. WITTMAN of Virginia, 

Mr. MILLER of Florida, Mr. BOREN, Mr. LOEBSACK, Mr. CARNEY, Mr. 

WILSON of Ohio, Mr. TIM MURPHY of Pennsylvania, Ms. BEAN, Mr. 

SHERMAN, Mr. KIRK, Mr. PETRI, Mr. CARSON, Mr. MEEKS of New York, 

Ms. DELAURO, Mr. MURPHY of Connecticut, Mr. HELLER of Nevada, 

Mr. KUHL of New York, and Mr. SMITH of New Jersey 

JUNE 10, 2008 

Reported with amendments, committed to the Committee of the Whole House 

on the State of the Union, and ordered to be printed 


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[Strike out all after the enacting clause and insert the part printed in italic] 

[For text of introduced bill, see copy of bill as introduced on March 15, 2007] 

A BILL 

To amend the Public Health Service Act to advance medical 

research and treatments into pediatric cancers, ensure 

patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer 

database, and promote public awareness of pediatric cancers. 

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 ‘‘Caroline Pryce Walker 

5 Conquer Childhood Cancer Act of 2008’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 

8 (1) Cancer kills more children than any other 

9 disease. 

10 (2) Each year cancer kills more children between 

11 1 and 20 years of age than asthma, diabetes, cystic 

12 fibrosis, and AIDS, combined. 

13 (3) Every year, over 12,500 young people are di14 agnosed with cancer. 


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1 (4) Each year, about 2,300 children and teen2 agers die from cancer. 

3 (5) One in every 330 Americans develops cancer 

4 before age 20. 

5 (6) Some forms of childhood cancer have proven 

6 to be so resistant that even in spite of the great re7 search strides made, most of those children die. Up to 

8 75 percent of the children with cancer can now be 

9 cured. 

10 (7) The causes of most childhood cancers are not 

11 yet known. 

12 (8) Childhood cancers are mostly those of the 

13 white blood cells (leukemias), brain, bone, the lym14 phatic system, and tumors of the muscles, kidneys, 

15 and nervous system. Each of these behaves differently, 

16 but all are characterized by an uncontrolled prolifera17 tion of abnormal cells. 

18 (9) Eighty percent of the children who are diag19 nosed with cancer have disease which has already 

20 spread to distant sites in the body. 

21 (10) Ninety percent of children with a form of 

22 pediatric cancer are treated at one of the more than 

23 200 Children’s Oncology Group member institutions 

24 throughout the United States. 


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1 SEC. 3. PURPOSES. 

2 It is the purpose of this Act to authorize appropria3 tions to— 

4 (1) encourage the support for pediatric cancer 

5 research and other activities related to pediatric can6 cer; 

7 (2) establish a comprehensive national childhood 

8 cancer registry; and 

9 (3) provide informational services to patients 

10 and families affected by childhood cancer. 

11 SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; 

12 NATIONAL CHILDHOOD CANCER REGISTRY. 

13 (a) PEDIATRIC CANCER RESEARCH AND AWARE14 NESS.—Subpart 1 of part C of title IV of the Public Health 

15 Service Act (42 U.S.C. 285 et seq.) is amended by adding 

16 at the end the following: 

17 ‘‘SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARE18 NESS. 

19 ‘‘(a) PEDIATRIC CANCER RESEARCH.— 

20 ‘‘(1) PROGRAMS OF RESEARCH EXCELLENCE IN

21 PEDIATRIC CANCER.—The Secretary, in collaboration 

22 with the Director of NIH and other Federal agencies 

23 with interest in prevention and treatment of pediatric 

24 cancer, shall continue to enhance, expand, and inten25 sify pediatric cancer research and other activities re26 lated to pediatric cancer, including therapeutically 


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1 applicable research to generate effective treatments, 

2 pediatric preclinical testing, and pediatric clinical 

3 trials through National Cancer Institute-supported 

4 pediatric cancer clinical trial groups and their mem5 ber institutions. In enhancing, expanding, and inten6 sifying such research and other activities, the Sec7 retary is encouraged to take into consideration the 

8 application of such research and other activities for 

9 minority, health disparity, and medically under10 served communities. For purposes of this section, the 

11 term ‘pediatric cancer research’ means research on the 

12 causes, prevention, diagnosis, recognition, treatment, 

13 and long-term effects of pediatric cancer. 

14 ‘‘(2) PEER REVIEW REQUIREMENTS.—All grants 

15 awarded under this subsection shall be awarded in ac16 cordance with section 492. 

17 ‘‘(b) PUBLIC AWARENESS OF PEDIATRIC CANCERS AND

18 AVAILABLE TREATMENTS AND RESEARCH.— 

19 ‘‘(1) IN GENERAL.—The Secretary may award 

20 grants to childhood cancer professional and direct 

21 service organizations for the expansion and wide22 spread implementation of— 

23 ‘‘(A) activities that provide available infor24 mation on treatment protocols to ensure early 


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1 access to the best available therapies and clinical 

2 trials for pediatric cancers; 

3 ‘‘(B) activities that provide available infor4 mation on the late effects of pediatric cancer 

5 treatment to ensure access to necessary long-term 

6 medical and psychological care; and 

7 ‘‘(C) direct resource services such as edu8 cational outreach for parents, peer-to-peer and 

9 parent-to-parent support networks, information 

10 on school re-entry and postsecondary education, 

11 and resource directories or referral services for fi12 nancial assistance, psychological counseling, and 

13 other support services. 

14 In awarding grants under this paragraph, the Sec15 retary is encouraged to take into consideration the ex16 tent to which an entity would use such grant for pur17 poses of making activities and services described in 

18 this paragraph available to minority, health dis19 parity, and medically underserved communities. 

20 ‘‘(2) PERFORMANCE MEASUREMENT, TRANS21 PARENCY, AND ACCOUNTABILITY.—For each grant 

22 awarded under this subsection, the Secretary shall de23 velop and implement metrics-based performance 

24 measures to assess the effectiveness of activities funded 

25 under such grant. 


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1 ‘‘(3) INFORMATIONAL REQUIREMENTS.—Any in2 formation made available pursuant to a grant award3 ed under paragraph (1) shall be— 

4 ‘‘(A) culturally and linguistically appro5 priate as needed by patients and families af6 fected by childhood cancer; and 

7 ‘‘(B) approved by the Secretary. 

8 ‘‘(c) RULE OF CONSTRUCTION.—Nothing in this sec9 tion shall be construed as being inconsistent with the goals 

10 and purposes of the Minority Health and Health Dispari11 ties Research and Education Act of 2000 (42 U.S.C. 202 

12 note). 

13 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For pur14 poses of carrying out this section and section 399E–1, there 

15 are authorized to be appropriated $30,000,000 for each of 

16 fiscal years 2009 through 2013. Such authorization of ap17 propriations is in addition to the authorization of appro18 priations established in section 402A with respect to such 

19 purpose. Funds appropriated under this subsection shall re20 main available until expended.’’. 

21 (b) NATIONAL CHILDHOOD CANCER REGISTRY.—Part 

22 M of title III of the Public Health Service Act (42 U.S.C. 

23 280e et seq.) is amended— 

24 (1) by inserting after section 399E the following: 


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1 ‘‘SEC. 399E–1. NATIONAL CHILDHOOD CANCER REGISTRY. 

2 ‘‘(a) IN GENERAL.—The Secretary, acting through the 

3 Director of the Centers for Disease Control and Prevention, 

4 shall award a grant to enhance and expand infrastructure 

5 to track the epidemiology of pediatric cancer into a com6 prehensive nationwide registry of actual occurrences of pe7 diatric cancer. Such registry shall be updated to include 

8 an actual occurrence within weeks of the date of such occur9 rence. 

10 ‘‘(b) INFORMED CONSENT AND PRIVACY REQUIRE11 MENTS AND COORDINATION WITH EXISTING PROGRAMS.— 

12 The registry established pursuant to subsection (a) shall be 

13 subject to section 552a of title 5, United States Code, the 

14 regulations promulgated under section 264(c) of the Health 

15 Insurance Portability and Accountability Act of 1996, ap16 plicable Federal and State informed consent regulations, 

17 any other applicable Federal and State laws relating to the 

18 privacy of patient information, and section 399B(d)(4) of 

19 this Act.’’; and 

20 (2) in section 399F(a), by inserting ‘‘(other than 

21 section 399E–1)’’ after ‘‘this part’’. 

Amend the title so as to read: ‘‘A bill to amend the 

Public Health Service Act to advance medical research 

and treatments into pediatric cancers, ensure patients 

and families have access to information regarding pediatric cancers and current treatments for such cancers, esVerDate Aug 31 2005 00:43 Jun 11, 2008 Jkt 069200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H1553.RH H1553

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tablish a national childhood cancer registry, and promote 

public awareness of pediatric cancer.’’. 


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Union Calendar No. 448 

110TH CONGRESS 

2D SESSION H. R. 1553 

[Report No. 110

–706] 

A BILL 

To amend the Public Health Service Act to advance 

promote public awareness of pediatric cancers. based national childhood cancer database, and garding pediatric cancers, establish a populationto the current treatments and information recancers, ensure patients and families have access medical research and treatments into pediatric 

JUNE 10, 2008 

Reported with amendments, committed to the Committee 

dered to be printed of the Whole House on the State of the Union, and orVerDate Aug 31 2005 00:43 Jun 11, 2008 Jkt 069200 PO 00000 Frm 00012 Fmt 6651 Sfmt 6651 E:\BILLS\H1553.RH H1553

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