108TH CONGRESS

1ST SESSION H. R. 3034

AN ACT

To amend the Public Health Service Act to reauthorize the National Bone Marrow Donor Registry, and for other purposes.

108TH CONGRESS

1ST SESSION H. R. 3034

AN ACT

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,
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1 SECTION 1. SHORT TITLE.

2 This Act may be cited as the ‘‘National Bone Marrow

3 Donor Registry Reauthorization Act’’.

4 SEC. 2. NATIONAL BONE MARROW DONOR REGISTRY.

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

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

7 (1) in subsection (a)—

8 (A) in paragraph (1), by striking ‘‘except

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

10 that—

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

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

13 member of the board who most recently served

14 as the Chair; and

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

16 may be served by any member of the board who

17 has no employment, governance, or financial af18 filiation with any donor center, recruitment

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

20 and

21 (B) in paragraph (4)—

22 (i) by striking ‘‘the Naval Medical Re23 search and Development Command’’ and

24 inserting ‘‘the Department of Defense

25 Marrow Donor Recruitment and Research
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1 Program operated by the Department of

2 the Navy’’; and

3 (ii) by striking ‘‘Organ’’ after ‘‘Divi4 sion of’’;

5 (2) in subsection (b)—

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

7 least’’ before ‘‘annually’’;

8 (B) in paragraph (7), by striking ‘‘and

9 comparisons of transplant centers regarding

10 search and other costs that prior to transplan11 tation are charged to patients by transplant

12 centers; and’’;

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

14 outreach’’ after ‘‘and demonstration’’;

15 (D) at the end of paragraph (8), by strik16 ing the period and inserting a semicolon;

17 (E) by redesignating paragraphs (3)

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

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

20 following:

21 ‘‘(3) maintain and expand medical emergency

22 contingency response capabilities in concert with

23 Federal programs for response to threats of use of

24 terrorist or military weapons that can damage mar25 row, such as ionizing radiation or chemical agents
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1 containing mustard, so that the capability of sup2 porting patients with marrow damage from disease

3 can be used to support casualties with marrow dam4 age;’’; and

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

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

7 the availability, efficiency, safety, and cost of trans8 plants from unrelated donors and the effectiveness

9 of Registry operations;

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

11 blood units listed in the Registry and assist cord

12 blood banks in the Registry program in accordance

13 with subsection (c); and

14 ‘‘(12) establish bylaws and procedures—

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

16 of directors of the Registry who has an employ17 ment, governance, or financial affiliation with a

18 donor center, recruitment group, transplant

19 center, or cord blood bank from participating in

20 any decision that materially affects the center,

21 recruitment group, transplant center, or cord

22 blood bank; and

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

24 the board with any such affiliation.’’;

25 (3) in subsection (c)—
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1 (A) in clause (ii) of paragraph (2)(A), by

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

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

4 availability, as a potential treatment option, of

5 receiving a transplant of bone marrow from an

6 unrelated donor’’ and inserting ‘‘transplants

7 from unrelated donors as a treatment option

8 and resources for identifying and evaluating

9 other therapeutic alternatives’’;

10 (4) in subsection (d)—

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

12 assist with information regarding third party

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

14 donor’’;

15 (B) in paragraph (2)(F)—

16 (i) by redesignating clause (v) as

17 clause (vi); and

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

19 following:

20 ‘‘(v) Information concerning issues

21 that patients may face after a transplant

22 regarding continuity of care and quality of

23 life.’’; and

24 (C) in paragraph (3)(B), by striking ‘‘Of25 fice may’’ and inserting ‘‘Office shall’’;
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1 (5) in subsection (g), by striking ‘‘the bone

2 marrow donor program of the Department of the

3 Navy’’ and inserting ‘‘the Department of Defense

4 Marrow Donor Recruitment and Research Program

5 operated by the Department of the Navy’’;

6 (6) in subsection (h)—

7 (A) by striking ‘‘APPLICATION.—’’ and in8 serting ‘‘CONTRACTS.—’’;

9 (B) by striking ‘‘To be eligible’’ and insert10 ing the following:

11 ‘‘(1) APPLICATION.—To be eligible’’; and

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

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

14 under this section, the Secretary shall give substan15 tial weight to the continued safety of donors and pa16 tients and other factors deemed appropriate by the

17 Secretary.’’;

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

19 inserting ‘‘be’’; and

20 (8) by striking subsection (l).

21 (b) BONE MARROW SCIENTIFIC REGISTRY.—Section

22 379A of the Public Health Service Act (42 U.S.C. 274l)

23 is amended—

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

25 following: ‘‘The scientific registry shall participate in
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1 medical research that has the potential to improve

2 transplant outcomes.’’;

3 (2) in subsection (c), by striking ‘‘Each such re4 port shall in addition include the data required in

5 section 379(l) (relating to pretransplant costs).’’;

6 and

7 (3) by adding after subsection (c) the following:

8 ‘‘(d) PUBLICLY AVAILABLE DATA.—The scientific

9 registry shall make relevant scientific information not con10 taining individually identifiable information available to

11 the public in the form of summaries and data sets to en12 courage medical research and to provide information to

13 transplant programs, physicians, and patients.’’.

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

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

16 274k et seq.) is amended—

17 (1) by redesignating section 379B as section

18 379C; and

19 (2) by inserting after section 379A the fol20 lowing:

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

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

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

24 of hematopoietic progenitor cells the acquisition or use of

25 which is not inconsistent with Federal law.’’.
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1 (d) AUTHORIZATION OF APPROPRIATIONS.—Section

2 379C of the Public Health Service Act, as redesignated

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

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

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

6 this part, there are authorized to be appropriated

7 $32,000,000 for fiscal year 2004, and such sums as may

8 be necessary for each of the fiscal years 2005 through

9 2008.

10 ‘‘(b) EMERGENCY CONTINGENCY RESPONSE CAPA11 BILITIES.—In addition to the amounts authorized to be

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

13 be appropriated such sums as may be necessary for the

14 maintenance and expansion of emergency contingency re15 sponse capabilities under section 379(b)(3).’’.

Passed the House of Representatives October 1,

2003.

Attest:

Clerk.