[110th Congress Public Law 285]
[From the U.S. Government Printing Office]

[DOCID: f:publ285.110]

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Public Law 110-285
110th Congress

                                 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. <<NOTE: July 29, 
                         2008 -  [H.R. 1553]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress <<NOTE: Caroline Pryce Walker 
Conquer Childhood Cancer Act of 2008. 42 USC 201 note.>> assembled,

    This Act may be cited as the ``Caroline Pryce Walker Conquer 
Childhood Cancer Act of 2008''.
SEC. 2. <<NOTE: 42 USC 280e-3a note.>>  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, 
            (3) Every year, over 12,500 young people are diagnosed with 
            (4) Each year about 2,300 children and teenagers die from 
            (5) One in every 330 Americans develops cancer before age 
            (6) Some forms of childhood cancer have proven to be so 
        resistant that even in spite of the great research 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 lymphatic system, and tumors 
        of the muscles, kidneys, and nervous system. Each of these 
        behaves differently, but all are characterized by an 
        uncontrolled proliferation of abnormal cells.
            (9) Eighty percent of the children who are diagnosed 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.
SEC. 3. <<NOTE: 42 USC 280e-3a note.>>  PURPOSES.

    It is the purpose of this Act to authorize appropriations to--

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            (1) encourage the support for pediatric cancer research and 
        other activities related to pediatric cancer;
            (2) establish a comprehensive national childhood cancer 
        registry; and
            (3) provide informational services to patients and families 
        affected by childhood cancer.
                    CHILDHOOD CANCER REGISTRY.

    (a) Pediatric Cancer Research and Awareness.--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:
                          AND AWARENESS.

    ``(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 
        intensify pediatric cancer research and other activities related 
        to pediatric cancer, including therapeutically 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 member institutions. In enhancing, expanding, and 
        intensifying such research and other activities, the Secretary 
        is encouraged to take into consideration the application of such 
        research and other activities for minority, health disparity, 
        and medically underserved 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 accordance 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 widespread implementation of--
                    ``(A) activities that provide available information 
                on treatment protocols to ensure early access to the 
                best available therapies and clinical trials for 
                pediatric cancers;
                    ``(B) activities that provide available information 
                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 educational 
                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 financial assistance, 
                psychological counseling, and other support services.
        In awarding grants under this paragraph, the Secretary is 
        encouraged to take into consideration the extent to which an 
        entity would use such grant for purposes of making activities 
        and services described in this paragraph available to minority, 
        health disparity, and medically underserved communities.

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            ``(2) Performance measurement, transparency, and 
        accountability.--For each grant awarded under this subsection, 
        the Secretary shall develop and implement metrics-based 
        performance measures to assess the effectiveness of activities 
        funded under such grant.
            ``(3) Informational requirements.--Any information made 
        available pursuant to a grant awarded under paragraph (1) shall 
                    ``(A) culturally and linguistically appropriate as 
                needed by patients and families affected by childhood 
                cancer; and
                    ``(B) approved by the Secretary.

    ``(c) Rule of Construction.--Nothing in this section shall be 
construed as being inconsistent with the goals and purposes of the 
Minority Health and Health Disparities Research and Education Act of 
2000 (42 U.S.C. 202 note).
    ``(d) Authorization of Appropriations.--For purposes 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 appropriations is in addition to the authorization of 
appropriations established in section 402A with respect to such purpose. 
Funds appropriated under this subsection shall remain available until 
    (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:
``SEC. 399E-1. <<NOTE: 42 USC 280e-3a.>>  NATIONAL CHILDHOOD 
                              CANCER REGISTRY.

    ``(a) In General.--The <<NOTE: Grants.>>  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 comprehensive nationwide 
registry of actual occurrences of pediatric cancer. Such registry shall 
be updated to include an actual occurrence within weeks of the date of 
such occurrence.

    ``(b) Informed Consent and Privacy Requirements 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, applicable 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

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            (2) in section 399F(a), <<NOTE: 42 USC 280e-4.>>  by 
        inserting ``(other than section 399E-1)'' after ``this part''.

    Approved July 29, 2008.


HOUSE REPORTS: No. 110-706 (Comm. on Energy and Commerce).
            June 11, 12, considered and passed House.
            July 16, considered and passed Senate.