IB 
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 ac-
cess to the current treatments and information regarding pediatric can-
cers, 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. SUT-
TON, 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. BOS-
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00001
Fmt 6652
Sfmt 6652
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
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 Mex-
ico, 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. JACKSON- 
LEE
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. AN-
DREWS, 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 Illi-
nois, Mr. GINGREY, Ms. WASSERMAN SCHULTZ, Mrs. EMERSON, Mr. BU-
CHANAN, 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 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6652
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
[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 treat-
ments and information regarding pediatric cancers, es-
tablish a population-based national childhood cancer 
database, and promote public awareness of pediatric can-
cers. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Caroline Pryce Walker 
Conquer Childhood Cancer Act of 2008’’. 
SEC. 2. FINDINGS. 
Congress makes the following findings: 
(1) Cancer kills more children than any other 
disease. 
(2) Each year cancer kills more children between 
1 and 20 years of age than asthma, diabetes, cystic 
fibrosis, and AIDS, combined. 
(3) Every year, over 12,500 young people are di-
agnosed with cancer. 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
(4) Each year, about 2,300 children and teen-
agers die from cancer. 
(5) One in every 330 Americans develops cancer 
before age 20. 
(6) Some forms of childhood cancer have proven 
to be so resistant that even in spite of the great re-
search strides made, most of those children die. Up to 
75 percent of the children with cancer can now be 
cured. 
(7) The causes of most childhood cancers are not 
yet known. 
(8) Childhood cancers are mostly those of the 
white blood cells (leukemias), brain, bone, the lym-
phatic system, and tumors of the muscles, kidneys, 
and nervous system. Each of these behaves differently, 
but all are characterized by an uncontrolled prolifera-
tion of abnormal cells. 
(9) Eighty percent of the children who are diag-
nosed with cancer have disease which has already 
spread to distant sites in the body. 
(10) Ninety percent of children with a form of 
pediatric cancer are treated at one of the more than 
200 Children’s Oncology Group member institutions 
throughout the United States. 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
SEC. 3. PURPOSES. 
It is the purpose of this Act to authorize appropria-
tions to— 
(1) encourage the support for pediatric cancer 
research and other activities related to pediatric can-
cer; 
(2) establish a comprehensive national childhood 
cancer registry; and 
(3) provide informational services to patients 
and families affected by childhood cancer. 
SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; 
NATIONAL CHILDHOOD CANCER REGISTRY. 
(a) PEDIATRIC CANCER RESEARCH
AND AWARE-
NESS.—Subpart 1 of part C of title IV of the Public Health 
Service Act (42 U.S.C. 285 et seq.) is amended by adding 
at the end the following: 
‘‘SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARE-
NESS. 
‘‘(a) PEDIATRIC CANCER RESEARCH.— 
‘‘(1) PROGRAMS OF RESEARCH EXCELLENCE IN 
PEDIATRIC CANCER.—The Secretary, in collaboration 
with the Director of NIH and other Federal agencies 
with interest in prevention and treatment of pediatric 
cancer, shall continue to enhance, expand, and inten-
sify pediatric cancer research and other activities re-
lated to pediatric cancer, including therapeutically 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
applicable research to generate effective treatments, 
pediatric preclinical testing, and pediatric clinical 
trials through National Cancer Institute-supported 
pediatric cancer clinical trial groups and their mem-
ber institutions. In enhancing, expanding, and inten-
sifying such research and other activities, the Sec-
retary is encouraged to take into consideration the 
application of such research and other activities for 
minority, health disparity, and medically under-
served communities. For purposes of this section, the 
term ‘pediatric cancer research’ means research on the 
causes, prevention, diagnosis, recognition, treatment, 
and long-term effects of pediatric cancer. 
‘‘(2) PEER REVIEW REQUIREMENTS.—All grants 
awarded under this subsection shall be awarded in ac-
cordance with section 492. 
‘‘(b) PUBLIC AWARENESS OF PEDIATRIC CANCERS AND 
AVAILABLE TREATMENTS AND RESEARCH.— 
‘‘(1) IN GENERAL.—The Secretary may award 
grants to childhood cancer professional and direct 
service organizations for the expansion and wide-
spread implementation of— 
‘‘(A) activities that provide available infor-
mation on treatment protocols to ensure early 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
access to the best available therapies and clinical 
trials for pediatric cancers; 
‘‘(B) activities that provide available infor-
mation on the late effects of pediatric cancer 
treatment to ensure access to necessary long-term 
medical and psychological care; and 
‘‘(C) direct resource services such as edu-
cational outreach for parents, peer-to-peer and 
parent-to-parent support networks, information 
on school re-entry and postsecondary education, 
and resource directories or referral services for fi-
nancial assistance, psychological counseling, and 
other support services. 
In awarding grants under this paragraph, the Sec-
retary is encouraged to take into consideration the ex-
tent to which an entity would use such grant for pur-
poses of making activities and services described in 
this paragraph available to minority, health dis-
parity, and medically underserved communities. 
‘‘(2) 
PERFORMANCE
MEASUREMENT, 
TRANS-
PARENCY, AND
ACCOUNTABILITY.—For each grant 
awarded under this subsection, the Secretary shall de-
velop and implement metrics-based performance 
measures to assess the effectiveness of activities funded 
under such grant. 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
‘‘(3) INFORMATIONAL REQUIREMENTS.—Any in-
formation made available pursuant to a grant award-
ed under paragraph (1) shall be— 
‘‘(A) culturally and linguistically appro-
priate as needed by patients and families af-
fected by childhood cancer; and 
‘‘(B) approved by the Secretary. 
‘‘(c) RULE OF CONSTRUCTION.—Nothing in this sec-
tion shall be construed as being inconsistent with the goals 
and purposes of the Minority Health and Health Dispari-
ties Research and Education Act of 2000 (42 U.S.C. 202 
note). 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For pur-
poses of carrying out this section and section 399E–1, there 
are authorized to be appropriated $30,000,000 for each of 
fiscal years 2009 through 2013. Such authorization of ap-
propriations is in addition to the authorization of appro-
priations established in section 402A with respect to such 
purpose. Funds appropriated under this subsection shall re-
main available until expended.’’. 
(b) NATIONAL CHILDHOOD CANCER REGISTRY.—Part 
M of title III of the Public Health Service Act (42 U.S.C. 
280e et seq.) is amended— 
(1) by inserting after section 399E the following: 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6203
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
‘‘SEC. 399E–1. NATIONAL CHILDHOOD CANCER REGISTRY. 
‘‘(a) IN GENERAL.—The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, 
shall award a grant to enhance and expand infrastructure 
to track the epidemiology of pediatric cancer into a com-
prehensive nationwide registry of actual occurrences of pe-
diatric cancer. Such registry shall be updated to include 
an actual occurrence within weeks of the date of such occur-
rence. 
‘‘(b) INFORMED CONSENT
AND PRIVACY REQUIRE-
MENTS AND COORDINATION WITH EXISTING PROGRAMS.— 
The registry established pursuant to subsection (a) shall be 
subject to section 552a of title 5, United States Code, the 
regulations promulgated under section 264(c) of the Health 
Insurance Portability and Accountability Act of 1996, ap-
plicable Federal and State informed consent regulations, 
any other applicable Federal and State laws relating to the 
privacy of patient information, and section 399B(d)(4) of 
this Act.’’; and 
(2) in section 399F(a), by inserting ‘‘(other than 
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 pedi-
atric cancers and current treatments for such cancers, es-
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6201
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
tablish a national childhood cancer registry, and promote 
public awareness of pediatric cancer.’’. 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00010
Fmt 6652
Sfmt 6201
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00011
Fmt 6652
Sfmt 6201
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS
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 
medical research and treatments into pediatric 
cancers, ensure patients and families have access 
to the current treatments and information re-
garding pediatric cancers, establish a population- 
based national childhood cancer database, and 
promote public awareness of pediatric cancers. 
JUNE 10, 2008 
Reported with amendments, committed to the Committee 
of the Whole House on the State of the Union, and or-
dered to be printed 
VerDate Aug 31 2005 
00:43 Jun 11, 2008
Jkt 069200
PO 00000
Frm 00012
Fmt 6651
Sfmt 6651
E:\BILLS\H1553.RH
H1553
erowe on PRODPC61 with BILLS