110TH CONGRESS 

2D SESSION H. R. 1553 

AN ACT 

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, establish a national childhood cancer registry, 

and promote public awareness of pediatric cancer. 
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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 be11 tween 1 and 20 years of age than asthma, diabetes, 

12 cystic fibrosis, and AIDS, combined. 

13 (3) Every year, over 12,500 young people are 

14 diagnosed with cancer. 

15 (4) Each year about 2,300 children and teen16 agers die from cancer. 

17 (5) One in every 330 Americans develops cancer 

18 before age 20. 

19 (6) Some forms of childhood cancer have proven 

20 to be so resistant that even in spite of the great re21 search strides made, most of those children die. Up 

22 to 75 percent of the children with cancer can now 

23 be cured. 

24 (7) The causes of most childhood cancers are 

25 not yet known. 
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1 (8) Childhood cancers are mostly those of the 

2 white blood cells (leukemias), brain, bone, the lym3 phatic system, and tumors of the muscles, kidneys, 

4 and nervous system. Each of these behaves dif5 ferently, but all are characterized by an uncontrolled 

6 proliferation of abnormal cells. 

7 (9) Eighty percent of the children who are diag8 nosed with cancer have disease which has already 

9 spread to distant sites in the body. 

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

11 pediatric cancer are treated at one of the more than 

12 200 Children’s Oncology Group member institutions 

13 throughout the United States. 

14 SEC. 3. PURPOSES. 

15 It is the purpose of this Act to authorize appropria16 tions to— 

17 (1) encourage the support for pediatric cancer 

18 research and other activities related to pediatric can19 cer; 

20 (2) establish a comprehensive national child21 hood cancer registry; and 

22 (3) provide informational services to patients 

23 and families affected by childhood cancer. 
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1 SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; 

2 NATIONAL CHILDHOOD CANCER REGISTRY. 

3 (a) PEDIATRIC CANCER RESEARCH AND AWARE4 NESS.—Subpart 1 of part C of title IV of the Public 

5 Health Service Act (42 U.S.C. 285 et seq.) is amended 

6 by adding at the end the following: 

7 ‘‘SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARE8 NESS. 

9 ‘‘(a) PEDIATRIC CANCER RESEARCH.— 

10 ‘‘(1) PROGRAMS OF RESEARCH EXCELLENCE IN

11 PEDIATRIC CANCER.—The Secretary, in collabora12 tion with the Director of NIH and other Federal 

13 agencies with interest in prevention and treatment of 

14 pediatric cancer, shall continue to enhance, expand, 

15 and intensify pediatric cancer research and other ac16 tivities related to pediatric cancer, including thera17 peutically applicable research to generate effective 

18 treatments, pediatric preclinical testing, and pedi19 atric clinical trials through National Cancer Insti20 tute-supported pediatric cancer clinical trial groups 

21 and their member institutions. In enhancing, ex22 panding, and intensifying such research and other 

23 activities, the Secretary is encouraged to take into 

24 consideration the application of such research and 

25 other activities for minority, health disparity, and 

26 medically underserved communities. For purposes of 
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1 this section, the term ‘pediatric cancer research’ 

2 means research on the causes, prevention, diagnosis, 

3 recognition, treatment, and long-term effects of pedi4 atric cancer. 

5 ‘‘(2) PEER REVIEW REQUIREMENTS.—All 

6 grants awarded under this subsection shall be 

7 awarded in accordance with section 492. 

8 ‘‘(b) PUBLIC AWARENESS OF PEDIATRIC CANCERS

9 AND AVAILABLE TREATMENTS AND RESEARCH.— 

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

11 grants to childhood cancer professional and direct 

12 service organizations for the expansion and wide13 spread implementation of— 

14 ‘‘(A) activities that provide available infor15 mation on treatment protocols to ensure early 

16 access to the best available therapies and clin17 ical trials for pediatric cancers; 

18 ‘‘(B) activities that provide available infor19 mation on the late effects of pediatric cancer 

20 treatment to ensure access to necessary long21 term medical and psychological care; and 

22 ‘‘(C) direct resource services such as edu23 cational outreach for parents, peer-to-peer and 

24 parent-to-parent support networks, information 

25 on school re-entry and postsecondary education, 
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1 and resource directories or referral services for 

2 financial assistance, psychological counseling, 

3 and other support services. 

4 In awarding grants under this paragraph, the Sec5 retary is encouraged to take into consideration the 

6 extent to which an entity would use such grant for 

7 purposes of making activities and services described 

8 in this paragraph available to minority, health dis9 parity, and medically underserved communities. 

10 ‘‘(2) PERFORMANCE MEASUREMENT, TRANS11 PARENCY, AND ACCOUNTABILITY.—For each grant 

12 awarded under this subsection, the Secretary shall 

13 develop and implement metrics-based performance 

14 measures to assess the effectiveness of activities 

15 funded under such grant. 

16 ‘‘(3) INFORMATIONAL REQUIREMENTS.—Any 

17 information made available pursuant to a grant 

18 awarded under paragraph (1) shall be— 

19 ‘‘(A) culturally and linguistically appro20 priate as needed by patients and families af21 fected by childhood cancer; and 

22 ‘‘(B) approved by the Secretary. 

23 ‘‘(c) RULE OF CONSTRUCTION.—Nothing in this sec24 tion shall be construed as being inconsistent with the goals 

25 and purposes of the Minority Health and Health Dispari-
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1 ties Research and Education Act of 2000 (42 U.S.C. 202 

2 note). 

3 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For 

4 purposes of carrying out this section and section 399E– 

5 1, there are authorized to be appropriated $30,000,000 

6 for each of fiscal years 2009 through 2013. Such author7 ization of appropriations is in addition to the authoriza8 tion of appropriations established in section 402A with re9 spect to such purpose. Funds appropriated under this sub10 section shall remain available until expended.’’. 

11 (b) NATIONAL CHILDHOOD CANCER REGISTRY.— 

12 Part M of title III of the Public Health Service Act (42 

13 U.S.C. 280e et seq.) is amended— 

14 (1) by inserting after section 399E the fol15 lowing: 

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

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

18 the Director of the Centers for Disease Control and Pre19 vention, shall award a grant to enhance and expand infra20 structure to track the epidemiology of pediatric cancer into 

21 a comprehensive nationwide registry of actual occurrences 

22 of pediatric cancer. Such registry shall be updated to in23 clude an actual occurrence within weeks of the date of 

24 such occurrence. 
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1 ‘‘(b) INFORMED CONSENT AND PRIVACY REQUIRE2 MENTS AND COORDINATION WITH EXISTING PRO3 GRAMS.—The registry established pursuant to subsection 

4 (a) shall be subject to section 552a of title 5, United 

5 States Code, the regulations promulgated under section 

6 264(c) of the Health Insurance Portability and Account7 ability Act of 1996, applicable Federal and State informed 

8 consent regulations, any other applicable Federal and 

9 State laws relating to the privacy of patient information, 

10 and section 399B(d)(4) of this Act.’’; and 

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

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

Passed the House of Representatives June 12, 2008. 

Attest: 

Clerk. 

110TH CONGRESS 

2D SESSION H. R. 1553 

AN ACT 

To amend the Public Health Service Act to advance 

public awareness of pediatric cancer. national childhood cancer registry, and promote current treatments for such cancers, establish a to information regarding pediatric cancers and cancers, ensure patients and families have access medical research and treatments into pediatric