[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 911 Reported in Senate (RS)]






                                                       Calendar No. 535
110th CONGRESS
  1st Session
                                 S. 911

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 regarding pediatric 
    cancers, establish a population-based national childhood cancer 
      database, and promote public awareness of pediatric cancers.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             March 19, 2007

   Mr. Reed (for himself, Mr. Coleman, Mr. Hagel, Mr. Chambliss, Mr. 
    Lugar, Mr. Isakson, Mr. Bunning, Mr. Graham, Ms. Stabenow, Mr. 
   Whitehouse, Mr. Lautenberg, Mr. Kerry, Mr. Brown, Mr. Carper, Mr. 
   Johnson, Mr. Wyden, Mr. McConnell, Mr. Bayh, Mr. Lieberman, Mrs. 
   Feinstein, Mr. Cochran, Mr. Cornyn, Mrs. Boxer, Mrs. Clinton, Mr. 
Cardin, Mr. Sanders, Mr. Akaka, Mr. Bingaman, Mr. Schumer, Mr. Inouye, 
    Mr. Menendez, Mr. Domenici, Mr. Burr, Mr. Leahy, Mr. Casey, Ms. 
  Klobuchar, Mr. Pryor, Ms. Mikulski, Mr. Kennedy, Ms. Landrieu, Mr. 
 Biden, Mr. Reid, Mr. Dodd, Mrs. Lincoln, and Mrs. Murray) introduced 
the following bill; which was read twice and referred to the Committee 
               on Health, Education, Labor, and Pensions

                           December 12, 2007

               Reported by Mr. Kennedy, with an amendment
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]

_______________________________________________________________________

                                 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 regarding pediatric 
    cancers, establish a population-based national childhood cancer 
      database, and promote public awareness of pediatric cancers.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

<DELETED>SECTION 1. SHORT TITLE.</DELETED>

<DELETED>    This Act may be cited as the ``Conquer Childhood Cancer 
Act of 2007''.</DELETED>

<DELETED>SEC. 2. FINDINGS.</DELETED>

<DELETED>    Congress makes the following findings:</DELETED>
        <DELETED>    (1) Cancer kills more children than any other 
        disease.</DELETED>
        <DELETED>    (2) Each year cancer kills more children between 1 
        and 20 years of age than asthma, diabetes, cystic fibrosis, and 
        AIDS, combined.</DELETED>
        <DELETED>    (3) Every year, over 12,500 young people are 
        diagnosed with cancer.</DELETED>
        <DELETED>    (4) Each year about 2,300 children and teenagers 
        die from cancer.</DELETED>
        <DELETED>    (5) One in every 330 Americans develops cancer 
        before age 20.</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (7) The causes of most childhood cancers are not 
        yet known.</DELETED>
        <DELETED>    (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.</DELETED>
        <DELETED>    (9) Eighty percent of the children who are 
        diagnosed with cancer have disease which has already spread to 
        distant sites in the body.</DELETED>
        <DELETED>    (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.</DELETED>

<DELETED>SEC. 3. PURPOSES.</DELETED>

<DELETED>    It is the purpose of this Act to authorize appropriations 
to--</DELETED>
        <DELETED>    (1) encourage and expand the support for 
        biomedical research programs of the existing National Cancer 
        Institute-designated multicenter national infrastructure for 
        pediatric cancer research;</DELETED>
        <DELETED>    (2) establish a population-based national 
        childhood cancer database (the Children's Cancer Research 
        Network) to evaluate incidence trends of childhood cancers and 
        to enable the investigations of genetic epidemiology in order 
        to identify causes to aid in development of prevention 
        strategies;</DELETED>
        <DELETED>    (3) provide informational services to patients and 
        families affected by childhood cancer;</DELETED>
        <DELETED>    (4) support the development, construction, and 
        operation of a comprehensive online public information system 
        on childhood cancers and services available to families; 
        and</DELETED>
        <DELETED>    (5) establish a fellowship program in pediatric 
        cancer research to foster clinical and translational research 
        career development in pediatric oncologists in the early stages 
        of their career.</DELETED>

<DELETED>SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS.</DELETED>

<DELETED>    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:</DELETED>

<DELETED>``SEC. 417E. PEDIATRIC CANCER RESEARCH AND 
              AWARENESS.</DELETED>

<DELETED>    ``(a) Pediatric Cancer Research.--</DELETED>
        <DELETED>    ``(1) Special programs of research excellence in 
        pediatric cancers.--The Director of NIH, acting through the 
        National Cancer Institute, shall establish special programs of 
        research excellence in the area of pediatric cancers. Such 
        programs shall demonstrate a balanced approach to research 
        cause, prognosis, prevention, diagnosis, and treatment of 
        pediatric cancers that foster translation of basic research 
        findings into innovative interventions applied to 
        patients.</DELETED>
        <DELETED>    ``(2) Fellowship of excellence in pediatric cancer 
        research.--The Secretary shall develop a grant mechanism for 
        the establishment, in cooperation with the National Cancer 
        Institute-supported pediatric cancer clinical trial groups, of 
        Research Fellowships in Pediatric Cancer to support adequate 
        numbers of pediatric focused clinical and translational 
        investigators thereby facilitating continuous momentum of 
        research excellence.</DELETED>
<DELETED>    ``(b) National Childhood Cancer Registry.--The Director of 
NIH shall award a grant for the operation of a population-based 
national childhood cancer database, the Childhood Cancer Research 
Network (CCRN), of the Children's Oncology Group, in cooperation with 
the National Cancer Institute.</DELETED>
<DELETED>    ``(c) Public Awareness of Pediatric Cancers and Available 
Treatments and Research.--The Secretary shall award grants to 
recognized childhood cancer professional and advocacy organizations for 
the expansion and widespread implementation of activities to raise 
public awareness of currently available information, treatment, and 
research with the intent to ensure access to best available therapies 
for pediatric cancers.</DELETED>
<DELETED>    ``(d) Authorization of Appropriations.--There are 
authorized to be appropriated to carry out this section, $30,000,000 
for each of fiscal years 2008 through 2012. Funds appropriated under 
this section shall remain available until expended.''.</DELETED>

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Conquer Childhood Cancer Act of 
2007''.

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 1 of the more than 200 Children's 
        Oncology Group member institutions throughout the United 
        States.

SEC. 3. 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, acting through the Director of NIH, in 
        collaboration with other Federal agencies with interest in 
        prevention and treatment of pediatric cancer, shall enhance, 
        expand, and intensify pediatric cancer research, 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. 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) Fellowship of excellence in pediatric cancer 
        research.--The Secretary, acting through the Director of NIH, 
        shall award grants to enhance and expand cancer research 
        fellowships to train and develop clinical investigators focused 
        on pediatric cancer research.
            ``(3) 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.
            ``(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.
    ``(c) 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 2008 through 2012. 
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 Federal 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''.
                                                       Calendar No. 535

110th CONGRESS

  1st Session

                                 S. 911

_______________________________________________________________________

                                 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 regarding pediatric 
    cancers, establish a population-based national childhood cancer 
      database, and promote public awareness of pediatric cancers.

_______________________________________________________________________

                           December 12, 2007

                       Reported with an amendment