I

103D CONGRESS

2D SESSION S. 1774

IN THE HOUSE OF REPRESENTATIVES

NOVEMBER 29, 1994

Referred to the Committee on Energy and Commerce

AN ACT

To amend the Public Health Service Act to revise and extend

the bone marrow donor program, 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 ‘‘Bone Marrow Donor

5 Program Reauthorization Act of 1993’’.
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1 SEC. 2. REAUTHORIZATION.

2 (a) ESTABLISHMENT OF REGISTRY.—Section 379(a)

3 of the Public Health Service Act (42 U.S.C. 274k(a)) is

4 amended by adding at the end thereof the following: ‘‘With

5 respect to the board of directors—

6 ‘‘(1) each member of the board shall serve for

7 a term of 5 years, except that the terms of each

8 member who is serving on the date of enactment of

9 the Bone Marrow Donor Program Reauthorization

10 Act of 1993 shall expire at times determined by the

11 Secretary, in consultation with the board;

12 ‘‘(2) a member of the board may continue to

13 serve after the expiration of the term of such mem14 ber until a successor is appointed; and

15 ‘‘(3) to ensure the continuity of the board, not

16 more than one-fifth of the board shall be composed

17 of newly appointed members each year.’’.

18 (b) PROGRAM FOR RECRUITMENT OF DONORS.—Sec19 tion 379(b) of such Act (42 U.S.C. 274k(b)) is amended—

20 (1) in paragraph (5) to read as follows:

21 ‘‘(5) establish a program for the recruitment of

22 bone marrow donors that includes the compilation

23 and distribution of informational materials and proc24 esses to educate and update potential donors;’’;

25 (2) by redesignating paragraphs (6) and (7) as

26 paragraphs (7) and (8), respectively; and
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1 (3) by inserting after paragraph (5), the follow2 ing new paragraph:

3 ‘‘(6) regularly update the Registry to account

4 for changes in potential donor status;’’.

5 (c) INFORMATION AND EDUCATION PROGRAM.—Sec6 tion 379 of such Act (42 U.S.C. 274k) is amended—

7 (1) by redesignating subsection (j) as sub8 section (k);

9 (2) by inserting after subsection (i), the follow10 ing new subsection:

11 ‘‘(j) INFORMATION AND EDUCATION PROGRAM.—

12 ‘‘(1) IN GENERAL.—The Secretary may award

13 grants to, and enter into contracts with, public or

14 nonprofit private entities for the purpose of increas15 ing bone marrow donation by enabling such entities

16 to—

17 ‘‘(A) plan and conduct programs to provide

18 information and education to the public on the

19 need for donations of bone marrow;

20 ‘‘(B) train individuals in requesting such

21 donations; and

22 ‘‘(C) test and enroll marrow donors.

23 ‘‘(2) PRIORITIES.—In awarding grants and con24 tracts under paragraph (1), the Secretary shall give

25 priority to carrying out the purposes described in
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1 such paragraph with respect to minority popu2 lations.’’; and

3 (3) in subsection (k) (as so redesignated), by

4 striking ‘‘1991’’ and all that follows and inserting

5 ‘‘1994, and such sums as may be necessary for each

6 of the fiscal years 1995 and 1996.’’.

7 (d) PATIENT ADVOCACY AND CASE MANAGEMENT.—

8 (1) IN GENERAL.—Section 379 of such Act (42

9 U.S.C. 274k), as amended by subsection (c), is

10 amended—

11 (A) by redesignating subsection (k) as sub12 section (l); and

13 (B) by inserting after subsection (j), the

14 following new subsection:

15 ‘‘(k) PATIENT ADVOCACY AND CASE MANAGE16 MENT.—

17 ‘‘(1) ESTABLISHMENT.—The Secretary shall by

18 grant or contract establish and maintain an office of

19 patient advocacy and case management that meets

20 the requirements of this subsection.

21 ‘‘(2) PROVISIONS RELATING TO GRANTS AND

22 CONTRACTS.—

23 ‘‘(A) APPLICATION.—To be eligible for a

24 grant or contract under this subsection an en25 tity shall prepare and submit to the Secretary
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1 for approval an application that shall be in such

2 form, submitted in such manner, and contain

3 such information as the Secretary shall by regu4 lation prescribe.

5 ‘‘(B) LIMITATIONS.—A grant or contract

6 under this subsection shall be for a period of 3

7 years. No grant or contract may exceed

8 $500,000 for any such year.

9 ‘‘(3) FUNCTIONS.—The office established under

10 paragraph (1) shall—

11 ‘‘(A) be headed by a director who shall

12 serve as an advocate on behalf of—

13 ‘‘(i) individuals who are registered

14 with the Registry to search for a bio15 logically unrelated bone marrow donor; and

16 ‘‘(ii) the physicians involved;

17 ‘‘(B) establish and maintain a system for

18 patient advocacy that directly assists patients,

19 their families, and their physicians in a search

20 for an unrelated donor;

21 ‘‘(C) provide individual case management

22 services to directly assist individuals and physi23 cians referred to in subparagraph (A), includ24 ing—
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1 ‘‘(i) individualized case assessment,

2 tracking of preliminary search through ac3 tivation, and follow up when the search

4 process is interrupted or discontinued;

5 ‘‘(ii) informing individuals and physi6 cians of progress made in searching for ap7 propriate donors; and

8 ‘‘(iii) identifying and resolving individ9 ual search problems or concerns;

10 ‘‘(D) collect and analyze data concerning

11 the number and percentage of individuals pro12 ceeding from preliminary to formal search and

13 the number and percentage of patients unable

14 to complete the search process; and

15 ‘‘(E) survey patients to evaluate how well

16 such patients are being served and make rec17 ommendations for streamlining the search proc18 ess.

19 ‘‘(4) EVALUATION.—

20 ‘‘(A) IN GENERAL.—The Secretary shall

21 evaluate the system established under para22 graph (1) and make recommendations to Con23 gress concerning the success or failure of such

24 system in improving patient satisfaction, and
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1 any impact the system has had on assisting in2 dividuals in proceeding to transplant.

3 ‘‘(B) REPORT.—Not later than April 1,

4 1996, the Secretary shall prepare and submit to

5 the Committee on Energy and Commerce of the

6 House of Representatives and the Committee

7 on Labor and Human Resources of the Senate

8 a report concerning the evaluation conducted

9 under subparagraph (A), including the rec10 ommendations developed under such subpara11 graph.’’.

12 (2) REGISTRY FUNCTIONS.—Section 379(b)(2)

13 of such Act (42 U.S.C. 274k(b)(2)) is amended by

14 striking ‘‘establish’’ and all that follows through ‘‘di15 rectly assists’’ and inserting ‘‘cooperate with the pa16 tient advocacy and case management office estab17 lished under subsection (j) and make available infor18 mation on (A) the resources available through the

19 National Bone Marrow Donor Program, (B) the

20 comparative costs incurred by patients prior to

21 transplant, and (C) the marrow donor registries that

22 meet the standards described in subsection (c)(3)

23 and (d)(1), to assist’’.
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1 (3) EFFECTIVE DATE.—The amendments made

2 by this subsection shall take effect on April 1, 1995.

Passed the Senate November 22, 1993.

Attest: MARTHA S. POPE,

Secretary.