II

103D CONGRESS

1ST SESSION S. 1595

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

OCTOBER 27 (legislative day, OCTOBER 13), 1993

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

bill; which was read twice and referred to the Committee on Labor and

Human Resources

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 Section 379 of the Public Health Service Act (42

8 U.S.C. 274k) is amended—
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1 (1) in subsection (a), by adding at the end

2 thereof the following: ‘‘With respect to the board of

3 directors—

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

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

6 member who is serving on the date of enactment of

7 the Organ Transplant Program Reauthorization Act

8 of 1993 shall expire at times determined by the Sec9 retary, in consultation with the board;

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

11 serve after the expiration of the term of such mem12 ber until a successor is appointed; and

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

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

15 of newly appointed members each year.’’;

16 (2) in subsection (b)—

17 (A) in paragraph (2), by striking ‘‘estab18 lish’’ and all that follows through ‘‘directly as19 sists’’ and inserting ‘‘cooperate with the patient

20 advocacy and case management office estab21 lished under subsection (j) and make available

22 information on (A) the resources available

23 through the National Bone Marrow Donor Pro24 gram, (B) the comparative costs incurred by

25 patients prior to transplant, and (C) the mar-
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1 row donor registries that meet the standards

2 described in subsection (c)(3) and (d)(1), to as3 sist’’;

4 (B) in paragraph (5), to read as follows:

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

6 bone marrow donors that includes the compilation

7 and distribution of informational materials and proc8 esses to educate and update potential donors;’’;

9 (C) by redesignating paragraphs (6) and

10 (7) as paragraphs (7) and (8), respectively; and

11 (D) by inserting after paragraph (5), the

12 following new paragraph:

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

14 for changes in potential donor status;’’;

15 (3) by redesignating subsection (j) as sub16 section (l);

17 (4) by inserting after subsection (i), the follow18 ing new subsections:

19 ‘‘(j) PATIENT ADVOCACY AND CASE MANAGE20 MENT.—

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

22 grant or contract establish and maintain an office of

23 patient advocacy and case management that meets

24 the requirements of this subsection.
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1 ‘‘(2) PROVISIONS RELATING TO GRANTS AND

2 CONTRACTS.—

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

4 grant or contract under this subsection an en5 tity shall prepare and submit to the Secretary

6 for approval an application that shall be in such

7 form, submitted in such manner, and contain

8 such information as the Secretary shall by regu9 lation prescribe.

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

11 under this subsection shall be for a period of 3

12 years. No grant or contract may exceed

13 $500,000 for any such year.

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

15 paragraph (1) shall—

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

17 serve as an advocate on behalf of—

18 ‘‘(i) individuals who are registered

19 with the Registry to search for a bio20 logically unrelated bone marrow donor; and

21 ‘‘(ii) the physicians involved;

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

23 patient advocacy that directly assists patients,

24 their families, and their physicians in a search

25 for an unrelated donor;
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1 ‘‘(C) provide individual case management

2 services to directly assist individuals and physi3 cians referred to in subparagraph (A), includ4 ing—

5 ‘‘(i) individualized case assessment,

6 tracking of preliminary search through ac7 tivation, and follow up when the search

8 process is interrupted or discontinued;

9 ‘‘(ii) informing individuals and physi10 cians of progress made in searching for ap11 propriate donors; and

12 ‘‘(iii) identifying and resolving individ13 ual search problems or concerns;

14 ‘‘(D) collect and analyze data concerning

15 the number and percentage of individuals pro16 ceeding from preliminary to formal search and

17 the number and percentage of patients unable

18 to complete the search process; and

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

20 such patients are being served and make rec21 ommendations for streamlining the search proc22 ess.

23 ‘‘(4) EVALUATION.—

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

25 evaluate the system established under para-
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1 graph (1) and make recommendations to Con2 gress concerning the success or failure of such

3 system in improving patient satisfaction, and

4 any impact the system has had on assisting in5 dividuals in proceeding to transplant.

6 ‘‘(B) REPORT.—Not later than January 1,

7 1995, the Secretary shall prepare and submit to

8 the Committee on Energy and Commerce of the

9 House of Representatives and the Committee

10 on Labor and Human Resources of the Senate

11 a report concerning the evaluation conducted

12 under subparagraph (A), including the rec13 ommendations developed under such subpara14 graph.

15 ‘‘(k) INFORMATION AND EDUCATION PROGRAM.—

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

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

18 nonprofit private entities for the purpose of increas19 ing bone marrow donation by enabling such entities

20 to—

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

22 information and education to the public on the

23 need for donations of bone marrow;

24 ‘‘(B) train individuals in requesting such

25 donations; and
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1 ‘‘(C) test and enroll marrow donors.

2 ‘‘(2) ENROLLMENT.—Donors enrolled under

3 this subsection with Federal Government funds must

4 be enrolled with the Registry described in section

5 379. Such donors may be enrolled at other reg6 istries.

7 ‘‘(3) PRIORITIES.—In awarding grants and con8 tracts under paragraph (1), the Secretary shall give

9 priority to carrying out the purposes described in

10 such paragraph with respect to minority populations

11 and other populations that donate at a rate lower

12 than that of the general public.’’; and

13 (5) in subsection (l) (as so redesignated), by

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

15 ‘‘1994, and such sums as may be necessary for each

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

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