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[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1553 Enrolled Bill (ENR)]

        H.R.1553

                       One Hundred Tenth Congress

                                 of the

                        United States of America

                          AT THE SECOND SESSION

          Begun and held at the City of Washington on Thursday,
            the third day of January, two thousand and eight

                                 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.

    Be it enacted by the Senate and House of Representatives 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 diagnosed with 
    cancer.
        (4) Each year about 2,300 children and teenagers 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 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. PURPOSES.
    It is the purpose of this Act to authorize appropriations to--
        (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.
SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; NATIONAL 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:
``SEC. 417E. PEDIATRIC CANCER RESEARCH 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.
        ``(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 
    be--
            ``(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 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:
``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 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
        (2) in section 399F(a), by inserting ``(other than section 
    399E-1)'' after ``this part''.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.
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