[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1553 Engrossed in House (EH)]

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
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.

    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''.

            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 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.