‘‘establish a program for the recruitment of
bone marrow donors in accordance with sub-
section (k);’’;
(2) by striking subsection (j); and
(3) by inserting after subsection (i) the follow-
ing subsections:
‘‘(j) PATIENT ADVOCACY.—For purposes of sub-
section (b)(2), a program for patient advocacy is estab-
lished in accordance with this subsection if—
‘‘(1) the program is headed by a director;
‘‘(2) with respect to the procurement of bone
marrow, the program provides that the Director is
to serve as an advocate on behalf of—
‘‘(A) individuals who are registered with
the Registry to become a recipient of a trans-
plant from a biologically unrelated donor;
‘‘(B) the families of such individuals; and
‘‘(C) the physicians involved;
‘‘(3) the program provides case management
services for such individuals, families, and physi-
cians; and
‘‘(4) meets such other criteria as the Secretary
may establish.
‘‘(k) RECRUITMENT OF DONORS.—For purposes of
subsection (b)(5), a program for the recruitment of bone
marrow donors is established in accordance with this sub-
section if—
‘‘(1) in the case of an individual who is enrolled
with the Registry, the program provides for annual
(or more frequent) informational mailings to each
such individual, which mailings concern the status of
the activities of the Registry;
‘‘(2) the program provides for the training of
counselors to meet individually with individuals who
are so enrolled and who, pursuant to the Registry,
have been requested to undergo supplemental testing
pursuant to a search for bone marrow for a particu-
lar patient;
‘‘(3) in the case of an individual described in
paragraph (2), provide to the individual a general
description of the medical condition of the patient
involved and an assessment of the possibility that
the individual is a medically appropriate donor for
the patient;
‘‘(4) with respect to each meeting that, pursu-
ant to the Registry, is held with an individual de-
scribed in paragraph (2), the program provides for
the provision to the individual at each such meeting
of information regarding the possibility that, if it is
determined that it is medically inappropriate for the
individual to be a donor for the patient involved, a
sibling of the individual may nevertheless be a medi-
cally appropriate donor for the patient; and
‘‘(5) meets such other criteria as the Secretary
may establish.’’.
SEC. 5. STUDY BY GENERAL ACCOUNTING OFFICE.
(a) IN GENERAL.—Section 379A(a) of the Public
Health Service Act (42 U.S.C. 274l(a)) is amended by
striking ‘‘conduct’’ in the matter preceding paragraph (1)
and all that follows and inserting the following: ‘‘conduct
a study for the purpose of—
‘‘(1) assessing the extent to which the program
carried out under section 379 maintains the con-
fidentiality of the identity of individuals who are en-
rolled with the Registry;
‘‘(2) assessing the extent to which such individ-
uals cooperate with the Registry when the Registry
requests the individuals to undergo supplemental
testing regarding the donation of bone marrow;
‘‘(3) assessing, in the case of such individuals
who have been determined to be medically appro-
priate donors of bone marrow for the patients in-
volved, the extent to which such individuals are will-
ing to make a donation of bone marrow;
‘‘(4) assessing the extent to which activities car-
ried out pursuant to section 379(k) provide informa-
tion to the individuals involved that is sufficient for
the individuals to make informed decisions regarding
the donation of bone marrow;
‘‘(5) assessing the extent to which the case
management 
services 
provided 
under 
section
379(j)(3) are effective in assisting patients in receiv-
ing the transplants involved; and
‘‘(6) developing recommendations on improving
the program of the Registry, including proposals to
increase the number of transplants with successful
outcomes while maintaining the confidentiality of the
identity of the individuals authorizing the donations
of bone marrow.’’.
(b) DATE CERTAIN FOR SUBMISSION OF REPORT.—
Section 379A(b) of the Public Health Service Act (42
U.S.C. 274l(b)) is amended by striking ‘‘1 year’’ and all
that follows through ‘‘this part’’ and inserting the follow-
ing: ‘‘2 years after the date of the enactment of the Organ
and Bone Marrow Transplantation Amendments of
1993’’.