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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] 


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•HR 1230 RH

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. 


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1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Acquired Bone Marrow 

5 Failure Disease Research and Treatment Act of 2010’’. 

6 SEC. 2. ACQUIRED BONE MARROW FAILURE DISEASE RE7 SEARCH. 

8 Part B of title III of the Public Health Service Act 

9 (42 U.S.C. 243 et seq.) is amended by inserting after section 

10 317T the following: 

11 ‘‘SEC. 317U. ACQUIRED BONE MARROW FAILURE DISEASE 

12 RESEARCH. 

13 ‘‘(a) IN GENERAL.—The Secretary may conduct re14 search on acquired bone marrow failure diseases. Such re15 search may address factors including— 

16 ‘‘(1) trends in the characteristics of individuals 

17 who are diagnosed with acquired bone marrow failure 

18 diseases, including age, race and ethnicity, general ge19 ographic location, sex, family history, and any other 

20 characteristics determined appropriate by the Sec21 retary; 

22 ‘‘(2) the genetic and environmental factors, in23 cluding exposure to toxins, that may be associated 

24 with developing acquired bone marrow failure dis25 eases; 


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1 ‘‘(3) approaches to treating acquired bone mar2 row failure diseases; 

3 ‘‘(4) outcomes for individuals treated for ac4 quired bone marrow failure diseases, including out5 comes for recipients of stem cell therapeutic products; 

6 and 

7 ‘‘(5) any other factors pertaining to acquired 

8 bone marrow failure diseases determined appropriate 

9 by the Secretary. 

10 ‘‘(b) COLLABORATION WITH THE RADIATION INJURY

11 TREATMENT NETWORK.—In carrying out subsection (a), 

12 the Secretary may collaborate with the Radiation Injury 

13 Treatment Network of the C.W. Bill Young Cell Transplan14 tation Program established pursuant to section 379 to— 

15 ‘‘(1) augment data for the studies under such 

16 subsection; 

17 ‘‘(2) access technical assistance that may be pro18 vided by the Radiation Injury Treatment Network; or 

19 ‘‘(3) perform joint research projects. 

20 ‘‘(c) DEFINITION.—In this section, the term ‘acquired 

21 bone marrow failure disease’ means— 

22 ‘‘(1) myelodysplastic syndromes (MDS); 

23 ‘‘(2) aplastic anemia; 

24 ‘‘(3) paroxysmal nocturnal hemoglobinuria 

25 (PNH); 


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1 ‘‘(4) pure red cell aplasia; 

2 ‘‘(5) acute myeloid leukemia that has progressed 

3 from myelodysplastic syndromes; 

4 ‘‘(6) large granular lymphocytic leukemia; or 

5 ‘‘(7) any other bone marrow failure disease spec6 ified by the Secretary, to the extent such disease is ac7 quired and not inherited, as determined by the Sec8 retary.’’. 

9 SEC. 3. MINORITY-FOCUSED PROGRAMS ON ACQUIRED 

10 BONE MARROW FAILURE DISEASES. 

11 Title XVII of the Public Health Service Act (42 U.S.C. 

12 300u et seq.) is amended by inserting after section 1707A 

13 the following: 

14 ‘‘SEC. 1707B. MINORITY-FOCUSED PROGRAMS ON ACQUIRED 

15 BONE MARROW FAILURE DISEASES. 

16 ‘‘(a) INFORMATION AND REFERRAL SERVICES.— 

17 ‘‘(1) IN GENERAL.—The Secretary may establish 

18 and coordinate outreach and informational programs 

19 targeted to minority populations, including Hispanic, 

20 Asian-American, Native Hawaiian, and Pacific Is21 lander populations, that are affected by acquired bone 

22 marrow failure diseases. 

23 ‘‘(2) PROGRAM ACTIVITIES.—Programs under 

24 subsection (a) may carry out activities that include— 


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1 ‘‘(A) making information about treatment 

2 options and clinical trials for acquired bone 

3 marrow failure diseases publicly available; and 

4 ‘‘(B) providing referral services for treat5 ment options and clinical trials. 

6 ‘‘(b) DEFINITION.—In this section, the term ‘acquired 

7 bone marrow failure disease’ has the meaning given such 

8 term in section 317U(c).’’. 

9 SEC. 4. BEST PRACTICES FOR DIAGNOSIS OF AND CARE FOR 

10 INDIVIDUALS WITH ACQUIRED BONE MAR11 ROW FAILURE DISEASES. 

12 Part B of title III of the Public Health Service Act 

13 (42 U.S.C. 243 et seq.), as amended by section 2, is further 

14 amended by inserting after section 317U the following: 

15 ‘‘SEC. 317V. BEST PRACTICES FOR DIAGNOSIS OF AND CARE 

16 FOR INDIVIDUALS WITH ACQUIRED BONE 

17 MARROW FAILURE DISEASES. 

18 ‘‘(a) GRANTS.—The Secretary, acting through the Di19 rector of the Agency for Healthcare Research and Quality, 

20 may award grants to researchers to study best practices 

21 with respect to diagnosing acquired bone marrow failure 

22 diseases and providing care to individuals with such dis23 eases. 


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1 ‘‘(b) DEFINITION.—In this section, the term ‘acquired 

2 bone marrow failure disease’ has the meaning given such 

3 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.’’. 


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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 

diseases, and for other purposes. thorize research on acquired bone marrow failure Bone Marrow Failure Disease Registry, to aufor the establishment of a National Acquired 

SEPTEMBER 28, 2010 

Reported with amendments, committed to the Committee 

dered to be printed of the Whole House on the State of the Union, and orVerDate Mar 15 2010 00:07 Sep 29, 2010 Jkt 089200 PO 00000 Frm 00008 Fmt 6651 Sfmt 6651 E:\BILLS\H1230.RH H1230

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