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[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1230 Reported in House (RH)]

                                                 Union Calendar No. 377
111th CONGRESS
  2d Session
                                H. R. 1230

                          [Report No. 111-637]

To amend the Public Health Service Act to provide for the establishment 
    of a National Acquired Bone Marrow Failure Disease Registry, to 
 authorize research on acquired bone marrow failure diseases, and for 
                            other purposes.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                           February 26, 2009

    Ms. Matsui (for herself, Mr. Bishop of Georgia, Mr. Murtha, Mr. 
McDermott, Mrs. Emerson, Mr. Gene Green of Texas, Mr. Abercrombie, Ms. 
Schwartz, Mr. Conyers, Ms. Hirono, Ms. Bordallo, Mr. Lewis of Georgia, 
  Mr. Frank of Massachusetts, Mr. Wolf, Mr. King of New York, Mr. Van 
     Hollen, Mr. McGovern, Ms. DeGette, Mr. Arcuri, and Ms. Eshoo) 
 introduced the following bill; which was referred to the Committee on 
                          Energy and Commerce

                           September 28, 2010

Additional sponsors: Mr. Honda, Mr. Platts, Mr. Burgess, Mr. Gonzalez, 
   Mr. Bishop of New York, Mr. Sestak, Mr. Altmire, Ms. Baldwin, Mr. 
 Murphy of Connecticut, Mr. Barrow, Mr. Engel, Mr. Stark, Mr. Hinchey, 
   Mrs. Miller of Michigan, Mr. Braley of Iowa, Ms. Schakowsky, Mr. 
  McCotter, Mr. Butterfield, Mr. Snyder, Mr. Clay, Mr. Ellsworth, Mr. 
  Carnahan, Mr. Cleaver, Mrs. Bono Mack, Mr. Maffei, Mr. Latham, Mr. 
 Loebsack, Mr. Cohen, Mr. Ellison, Ms. Fudge, Mr. Chandler, Mr. Towns, 
Ms. Norton, Mr. Hall of Texas, Mr. Neal of Massachusetts, Mr. Hill, Mr. 
   Boucher, Mr. Faleomavaega, Mr. Olver, Mr. Pitts, Mr. Hastings of 
               Florida, Mr. Holden, and Mrs. Christensen

                           September 28, 2010

Reported with amendments, committed to the Committee of the Whole House 
          on the State of the Union, and ordered to be printed
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]
    [For text of introduced bill, see copy of bill as introduced on 
                           February 26, 2009]

_______________________________________________________________________

                                 A BILL

 
To amend the Public Health Service Act to provide for the establishment 
    of a National Acquired Bone Marrow Failure Disease Registry, to 
 authorize research on acquired bone marrow failure diseases, and for 
                            other purposes.

 

    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 ``Acquired Bone Marrow Failure Disease 
Research and Treatment Act of 2010''.

SEC. 2. ACQUIRED BONE MARROW FAILURE DISEASE RESEARCH.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.) is amended by inserting after section 317T the following:

``SEC. 317U. ACQUIRED BONE MARROW FAILURE DISEASE RESEARCH.

    ``(a) In General.--The Secretary may conduct research on acquired 
bone marrow failure diseases. Such research may address factors 
including--
            ``(1) trends in the characteristics of individuals who are 
        diagnosed with acquired bone marrow failure diseases, including 
        age, race and ethnicity, general geographic location, sex, 
        family history, and any other characteristics determined 
        appropriate by the Secretary;
            ``(2) the genetic and environmental factors, including 
        exposure to toxins, that may be associated with developing 
        acquired bone marrow failure diseases;
            ``(3) approaches to treating acquired bone marrow failure 
        diseases;
            ``(4) outcomes for individuals treated for acquired bone 
        marrow failure diseases, including outcomes for recipients of 
        stem cell therapeutic products; and
            ``(5) any other factors pertaining to acquired bone marrow 
        failure diseases determined appropriate by the Secretary.
    ``(b) Collaboration With the Radiation Injury Treatment Network.--
In carrying out subsection (a), the Secretary may collaborate with the 
Radiation Injury Treatment Network of the C.W. Bill Young Cell 
Transplantation Program established pursuant to section 379 to--
            ``(1) augment data for the studies under such subsection;
            ``(2) access technical assistance that may be provided by 
        the Radiation Injury Treatment Network; or
            ``(3) perform joint research projects.
    ``(c) Definition.--In this section, the term `acquired bone marrow 
failure disease' means--
            ``(1) myelodysplastic syndromes (MDS);
            ``(2) aplastic anemia;
            ``(3) paroxysmal nocturnal hemoglobinuria (PNH);
            ``(4) pure red cell aplasia;
            ``(5) acute myeloid leukemia that has progressed from 
        myelodysplastic syndromes;
            ``(6) large granular lymphocytic leukemia; or
            ``(7) any other bone marrow failure disease specified by 
        the Secretary, to the extent such disease is acquired and not 
        inherited, as determined by the Secretary.''.

SEC. 3. MINORITY-FOCUSED PROGRAMS ON ACQUIRED BONE MARROW FAILURE 
              DISEASES.

    Title XVII of the Public Health Service Act (42 U.S.C. 300u et 
seq.) is amended by inserting after section 1707A the following:

``SEC. 1707B. MINORITY-FOCUSED PROGRAMS ON ACQUIRED BONE MARROW FAILURE 
              DISEASES.

    ``(a) Information and Referral Services.--
            ``(1) In general.--The Secretary may establish and 
        coordinate outreach and informational programs targeted to 
        minority populations, including Hispanic, Asian-American, 
        Native Hawaiian, and Pacific Islander populations, that are 
        affected by acquired bone marrow failure diseases.
            ``(2) Program activities.--Programs under subsection (a) 
        may carry out activities that include--
                    ``(A) making information about treatment options 
                and clinical trials for acquired bone marrow failure 
                diseases publicly available; and
                    ``(B) providing referral services for treatment 
                options and clinical trials.
    ``(b) Definition.--In this section, the term `acquired bone marrow 
failure disease' has the meaning given such term in section 317U(c).''.

SEC. 4. BEST PRACTICES FOR DIAGNOSIS OF AND CARE FOR INDIVIDUALS WITH 
              ACQUIRED BONE MARROW FAILURE DISEASES.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.), as amended by section 2, is further amended by inserting 
after section 317U the following:

``SEC. 317V. BEST PRACTICES FOR DIAGNOSIS OF AND CARE FOR INDIVIDUALS 
              WITH ACQUIRED BONE MARROW FAILURE DISEASES.

    ``(a) Grants.--The Secretary, acting through the Director of the 
Agency for Healthcare Research and Quality, may award grants to 
researchers to study best practices with respect to diagnosing acquired 
bone marrow failure diseases and providing care to individuals with 
such diseases.
    ``(b) Definition.--In this section, the term `acquired bone marrow 
failure disease' has the meaning given such term in section 317U(c).''.
            Amend the title so as to read: ``A bill to amend the Public 
        Health Service Act to provide for research on acquired bone 
        marrow failure diseases, minority-focused programs on such 
        diseases, and the development of best practices for diagnosis 
        of and care for individuals with such diseases.''.
                                                 Union Calendar No. 377

111th CONGRESS

  2d Session

                               H. R. 1230

                          [Report No. 111-637]

_______________________________________________________________________

                                 A BILL

To amend the Public Health Service Act to provide for the establishment 
    of a National Acquired Bone Marrow Failure Disease Registry, to 
 authorize research on acquired bone marrow failure diseases, and for 
                            other purposes.

_______________________________________________________________________

                           September 28, 2010

Reported with amendments, committed to the Committee of the Whole House 
          on the State of the Union, and ordered to be printed
```