II

103D CONGRESS

1ST SESSION S. 1774

To amend the Public Health Service Act to revise and extend the bone

marrow donor program, and for other purposes.

IN THE SENATE OF THE UNITED STATES

NOVEMBER 22, 1993

Mr. KENNEDY (for himself and Mrs. KASSEBAUM) introduced the following

bill; which was read twice, considered, read the third time, and passed

A BILL

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’’.

6 SEC. 2. REAUTHORIZATION.

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

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

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

10 respect to the board of directors—
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1 ‘‘(1) each member of the board shall serve for

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

3 member who is serving on the date of enactment of

4 the Bone Marrow Donor Program Reauthorization

5 Act of 1993 shall expire at times determined by the

6 Secretary, in consultation with the board;

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

8 serve after the expiration of the term of such mem9 ber until a successor is appointed; and

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

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

12 of newly appointed members each year.’’.

13 (b) PROGRAM FOR RECRUITMENT OF DONORS.—Sec14 tion 379(b) of such Act (42 U.S.C. 274k(b)) is amended—

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

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

17 bone marrow donors that includes the compilation

18 and distribution of informational materials and proc19 esses to educate and update potential donors;’’;

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

21 paragraphs (7) and (8), respectively; and

22 (3) by inserting after paragraph (5), the follow23 ing new paragraph:

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

25 for changes in potential donor status;’’.
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1 (c) INFORMATION AND EDUCATION PROGRAM.—Sec2 tion 379 of such Act (42 U.S.C. 274k) is amended—

3 (1) by redesignating subsection (j) as sub4 section (k);

5 (2) by inserting after subsection (i), the follow6 ing new subsection:

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

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

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

10 nonprofit private entities for the purpose of increas11 ing bone marrow donation by enabling such entities

12 to—

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

14 information and education to the public on the

15 need for donations of bone marrow;

16 ‘‘(B) train individuals in requesting such

17 donations; and

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

19 ‘‘(2) PRIORITIES.—In awarding grants and con20 tracts under paragraph (1), the Secretary shall give

21 priority to carrying out the purposes described in

22 such paragraph with respect to minority popu23 lations.’’; and

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

25 striking ‘‘1991’’ and all that follows and inserting
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1 ‘‘1994, and such sums as may be necessary for each

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

3 (d) PATIENT ADVOCACY AND CASE MANAGEMENT.—

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

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

6 amended—

7 (A) by redesignating subsection (k) as sub8 section (l); and

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

10 following new subsection:

11 ‘‘(k) PATIENT ADVOCACY AND CASE MANAGE12 MENT.—

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

14 grant or contract establish and maintain an office of

15 patient advocacy and case management that meets

16 the requirements of this subsection.

17 ‘‘(2) PROVISIONS RELATING TO GRANTS AND

18 CONTRACTS.—

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

20 grant or contract under this subsection an en21 tity shall prepare and submit to the Secretary

22 for approval an application that shall be in such

23 form, submitted in such manner, and contain

24 such information as the Secretary shall by regu25 lation prescribe.
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1 ‘‘(B) LIMITATIONS.—A grant or contract

2 under this subsection shall be for a period of 3

3 years. No grant or contract may exceed

4 $500,000 for any such year.

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

6 paragraph (1) shall—

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

8 serve as an advocate on behalf of—

9 ‘‘(i) individuals who are registered

10 with the Registry to search for a bio11 logically unrelated bone marrow donor; and

12 ‘‘(ii) the physicians involved;

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

14 patient advocacy that directly assists patients,

15 their families, and their physicians in a search

16 for an unrelated donor;

17 ‘‘(C) provide individual case management

18 services to directly assist individuals and physi19 cians referred to in subparagraph (A), includ20 ing—

21 ‘‘(i) individualized case assessment,

22 tracking of preliminary search through ac23 tivation, and followup when the search

24 process is interrupted or discontinued;
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1 ‘‘(ii) informing individuals and physi2 cians of progress made in searching for ap3 propriate donors; and

4 ‘‘(iii) identifying and resolving individ5 ual search problems or concerns;

6 ‘‘(D) collect and analyze data concerning

7 the number and percentage of individuals pro8 ceeding from preliminary to formal search and

9 the number and percentage of patients unable

10 to complete the search process; and

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

12 such patients are being served and make rec13 ommendations for streamlining the search proc14 ess.

15 ‘‘(4) EVALUATION.—

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

17 evaluate the system established under para18 graph (1) and make recommendations to Con19 gress concerning the success or failure of such

20 system in improving patient satisfaction, and

21 any impact the system has had on assisting in22 dividuals in proceeding to transplant.

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

24 1996, the Secretary shall prepare and submit to

25 the Committee on Energy and Commerce of the
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1 House of Representatives and the Committee

2 on Labor and Human Resources of the Senate

3 a report concerning the evaluation conducted

4 under subparagraph (A), including the rec5 ommendations developed under such subpara6 graph.’’.

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

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

9 striking ‘‘establish’’ and all that follows through ‘‘di10 rectly assists’’ and inserting ‘‘cooperate with the pa11 tient advocacy and case management office estab12 lished under subsection (j) and make available infor13 mation on (A) the resources available through the

14 National Bone Marrow Donor Program, (B) the

15 comparative costs incurred by patients prior to

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

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

18 and (d)(1), to assist’’.

19 (3) EFFECTIVE DATE.—The amendments made

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

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