I 

108TH CONGRESS 

1ST SESSION H. R. 3034

To amend the Public Health Service Act to reauthorize the National Bone 

Marrow Donor Registry, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 5, 2003

Mr. YOUNG of Florida (for himself, Mr. BILIRAKIS, and Mr. TOWNS) introduced the following bill; which was referred to the Committee on Energy 

and Commerce 

A BILL

To amend the Public Health Service Act to reauthorize the 

National Bone Marrow Donor Registry, and for other 

purposes.

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 ‘‘National Bone Marrow 

5 Donor Registry Reauthorization Act’’. 

6 SEC. 2. NATIONAL BONE MARROW DONOR REGISTRY. 

7 (a) NATIONAL REGISTRY.—Section 379 of the Public 

8 Health Service Act (42 U.S.C. 274k) is amended—

9 (1) in subsection (a)—
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1 (A) in paragraph (1), by striking ‘‘except 

2 that’’ and all that follows and inserting ‘‘except 

3 that—

4 ‘‘(A) such limitations shall not apply to the 

5 Chair of the board (or the Chair-elect) or to the 

6 member of the board who most recently served 

7 as the Chair; and 

8 ‘‘(B) 1 additional consecutive 2-year term 

9 may be served by any member of the board who 

10 has no employment, governance, or financial af11 filiation with any donor center, recruitment 

12 group, transplant center, or cord blood bank.’’; 

13 (B) in paragraph (4)—

14 (i) by striking ‘‘the Naval Medical Re15 search and Development Command’’ and 

16 inserting ‘‘Department of Defense Marrow 

17 Donor Recruitment and Research Program 

18 operated by the Department of the Navy’’; 

19 and 

20 (ii) by striking ‘‘Organ’’ after ‘‘Divi21 sion of’’; 

22 (2) in subsection (b)—

23 (A) in paragraph (4), by inserting ‘‘at 

24 least’’ before ‘‘annually’’; 
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1 (B) in paragraph (7), by striking ‘‘and 

2 comparisons of transplant centers regarding 

3 search and other costs that prior to transplan4 tation are charged to patients by transplant 

5 centers; and’’; 

6 (C) in paragraph (8), by inserting ‘‘and 

7 outreach’’ after ‘‘and demonstration’’; 

8 (D) at the end of paragraph (8), by strik9 ing the period and inserting a semicolon; 

10 (E) by redesignating paragraphs (3) 

11 through (8) as paragraphs (4) through (9); 

12 (F) by inserting after paragraph (2), the 

13 following: 

14 ‘‘(3) maintain and expand medical emergency 

15 contingency response capabilities in concert with 

16 Federal programs for response to threats of use of 

17 terrorist or military weapons that can damage mar18 row, such as ionizing radiation or chemical agents 

19 containing mustard, so that the capability of sup20 porting patients with marrow damage from disease 

21 can be used to support casualties with marrow dam22 age;’’; and 

23 (G) by adding at the end the following: 

24 ‘‘(10) conduct and support research to improve 

25 the availability, efficiency, safety, and cost of trans-
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1 plants from unrelated donors and the effectiveness 

2 of Registry operations; 

3 ‘‘(11) increase the number of umbilical cord 

4 blood units listed in the Registry and assist cord 

5 blood banks in the Registry program in accordance 

6 with subsection (c); and 

7 ‘‘(12) establish bylaws and procedures—

8 ‘‘(A) to prohibit any member of the board 

9 of directors of the Registry who has an employ10 ment, governance, or financial affiliation with a 

11 donor center, recruitment group, transplant 

12 center, or cord blood bank from participating in 

13 any decision that materially affects the center, 

14 recruitment group, or cord blood bank; and 

15 ‘‘(B) to limit the number of members of 

16 the board with any such affiliation.’’; 

17 (3) in subsection (c)—

18 (A) in clause (ii) of paragraph (2)(A), by 

19 striking ‘‘, including providing updates’’; and 

20 (B) in paragraph (3), by striking ‘‘the 

21 availability, as a potential treatment option, of 

22 receiving a transplant of bone marrow from an 

23 unrelated donor’’ and inserting ‘‘transplants 

24 from unrelated donors as a treatment option 
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1 and resources for identifying and evaluating 

2 other therapeutic alternatives’’; 

3 (4) in subsection (d)—

4 (A) in paragraph (2)(C), by inserting ‘‘and 

5 assist with information regarding third party 

6 payor matters’’ after ‘‘ongoing search for a 

7 donor’’; 

8 (B) in paragraph (2)(F)—

9 (i) by redesignating clause (v) as 

10 clause (vi); and 

11 (ii) by inserting after clause (iv) the 

12 following: 

13 ‘‘(v) Information concerning issues 

14 that patients may face after a transplant 

15 regarding continuity of care and quality of 

16 life.’’; and 

17 (C) in paragraph (3)(B), by striking ‘‘Of18 fice may’’ and inserting ‘‘Office shall’’; 

19 (5) in subsection (g), by striking ‘‘the bone 

20 marrow donor program of the Department of the 

21 Navy’’ and inserting ‘‘Department of Defense Mar22 row Donor Recruitment and Research Program op23 erated by the Department of Navy’’; 

24 (6) in subsection (h)—
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1 (A) by striking ‘‘APPLICATION.—’’ and in2 serting ‘‘CONTRACTS.—’’; 

3 (B) by striking ‘‘To be eligible’’ and insert4 ing the following: ‘‘(1) APPLICATION.—To be 

5 eligible’’; and 

6 (C) by adding at the end the following: 

7 ‘‘(2) CONSIDERATIONS.—In awarding contracts 

8 under this section, the Secretary shall give substan9 tial weight to the continued safety of donors and pa10 tients and other factors deemed appropriate by the 

11 Secretary.’’; 

12 (7) in subsection (i), by striking ‘‘include’’ and 

13 inserting ‘‘be’’; and 

14 (8) by striking subsection (l). 

15 (b) BONE MARROW SCIENTIFIC REGISTRY.—Section 

16 379A of the Public Health Service Act (42 U.S.C. 274l) 

17 is amended—

18 (1) in subsection (a), by adding at the end the 

19 following: ‘‘The scientific registry shall participate in 

20 medical research that has the potential to improve 

21 transplant outcomes.’’; 

22 (2) in subsection (c), by striking ‘‘Each such re23 port shall in addition include the data required in 

24 section 379(l) (relating to pretransplant costs)’’; and 

25 (3) adding after subsection (c): 
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1 ‘‘(d) PUBLICLY AVAILABLE DATA.—The scientific 

2 registry shall make relevant scientific information not con3 taining personal identifiers available to the public in the 

4 form of summaries and data sets to encourage medical re5 search and to provide information to transplant programs, 

6 physicians, and patients.’’

7 (c) BONE MARROW AND MARROW DEFINED.—Part 

8 I of title III of the Public Health Service Act (42 U.S.C. 

9 274k et seq.) is amended—

10 (1) by redesignating section 379B as section 

11 379C; and 

12 (2) by inserting after section 379A the fol13 lowing: 

14 ‘‘SEC. 379B. BONE MARROW AND MARROW DEFINED. 

15 ‘‘For purposes of this part, the terms ‘bone marrow’ 

16 and ‘marrow’ include bone marrow and any other source 

17 of hematopoietic progenitor cells the acquisition or use of 

18 which is not inconsistent with Federal law.’’. 

19 (d) AUTHORIZATION OF APPROPRIATIONS.—Section 

20 379C of the Public Health Service Act, as redesignated 

21 by subsection (c), is amended to read as follows: 

22 ‘‘SEC. 379C. AUTHORIZATION OF APPROPRIATIONS. 

23 ‘‘(a) IN GENERAL.—For the purpose of carrying out 

24 this part, there are authorized to be appropriated 

25 $32,000,000 for fiscal year 2004, and such sums as may 
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1 be necessary for each of the fiscal years 2005 through 

2 2008. 

3 ‘‘(b) EMERGENCY CONTINGENCY RESPONSE CAPA4 BILITIES.—In addition to any amounts authorized to be 

5 appropriated under subsection (a), there are authorized to 

6 be appropriated such sums as may be necessary for the 

7 maintenance and expansion of emergency contingency re8 sponse capabilities under section 379(b)(3).’’.

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