H. R. 2202
One Hundred Fifth Congress
of the
United States of America
AT THE SECOND SESSION
Begun and held at the City of Washington on Tuesday,
the twenty-seventh day of January, one thousand nine hundred and ninety-eight
An Act
To amend the Public Health Service Act to revise and extend the bone marrow
donor program, and for other purposes.
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘National Bone Marrow Registry
Reauthorization Act of 1998’’.
SEC. 2. REAUTHORIZATION.
(a) ESTABLISHMENT OF REGISTRY.—Section 379(a) of the Public
Health Service Act (42 U.S.C. 274k(a)) is amended—
(1) by striking ‘‘(referred to in this part as the ‘Registry’)
that meets’’ and inserting ‘‘(referred to in this part as the
‘Registry’) that has the purpose of increasing the number of
transplants for recipients suitably matched to biologically unre-
lated donors of bone marrow, and that meets’’;
(2) by striking ‘‘under the direction of a board of directors
that shall include representatives of ’’ and all that follows and
inserting the following: ‘‘under the direction of a board of direc-
tors meeting the following requirements:
‘‘(1) Each member of the board shall serve for a term
of 2 years, and each such member may serve as many as
3 consecutive 2-year terms, except that such limitations shall
not apply to the Chair of the board (or the Chair-elect) or
to the member of the board who most recently served as the
Chair.
‘‘(2) A member of the board may continue to serve after
the expiration of the term of such member until a successor
is appointed.
‘‘(3) In order to ensure the continuity of the board, the
board shall be appointed so that each year the terms of approxi-
mately one-third of the members of the board expire.
‘‘(4) The membership of the board shall include representa-
tives of marrow donor centers and marrow transplant centers;
recipients of a bone marrow transplant; persons who require
or have required such a transplant; family members of such
a recipient or family members of a patient who has requested
the assistance of the Registry in searching for an unrelated
donor of bone marrow; persons with expertise in the social
sciences; and members of the general public; and in addition
nonvoting representatives from the Naval Medical Research
and Development Command and from the Division of Organ
H. R. 2202—2
Transplantation of the Health Resources and Services Adminis-
tration.’’.
(b) PROGRAM FOR UNRELATED MARROW TRANSPLANTS.—
(1) IN GENERAL.—Section 379(b) of the Public Health Serv-
ice Act (42 U.S.C. 274k(b)) is amended by redesignating para-
graph (7) as paragraph (8), and by striking paragraphs (2)
through (6) and inserting the following:
‘‘(2) carry out a program for the recruitment of bone marrow
donors in accordance with subsection (c), including with respect
to increasing the representation of racial and ethnic minority
groups (including persons of mixed ancestry) in the enrollment
of the Registry;
‘‘(3) carry out informational and educational activities in
accordance with subsection (c);
‘‘(4) annually update information to account for changes
in the status of individuals as potential donors of bone marrow;
‘‘(5) provide for a system of patient advocacy through the
office established under subsection (d);
‘‘(6) provide case management services for any potential
donor of bone marrow to whom the Registry has provided
a notice that the potential donor may be suitably matched
to a particular patient (which services shall be provided through
a mechanism other than the system of patient advocacy under
subsection (d)), and conduct surveys of donors and potential
donors to determine the extent of satisfaction with such services
and to identify ways in which the services can be improved;
‘‘(7) with respect to searches for unrelated donors of bone
marrow that are conducted through the system under para-
graph (1), collect and analyze and publish data on the number
and percentage of patients at each of the various stages of
the search process, including data regarding the furthest stage
reached; the number and percentage of patients who are unable
to complete the search process, and the reasons underlying
such circumstances; and comparisons of transplant centers
regarding search and other costs that prior to transplantation
are charged to patients by transplant centers; and’’.
(2) REPORT
OF
INSPECTOR
GENERAL; PLAN
REGARDING
RELATIONSHIP BETWEEN REGISTRY AND DONOR CENTERS.—The
Secretary of Health and Human Services shall ensure that,
not later than 1 year after the date of the enactment of this
Act, the National Bone Marrow Donor Registry (under section
379 of the Public Health Service Act) develops, evaluates, and
implements a plan to effectuate efficiencies in the relationship
between such Registry and donor centers. The plan shall incor-
porate, to the extent practicable, the findings and recommenda-
tions made in the inspection conducted by the Office of the
Inspector General (Department of Health and Human Services)
as of January 1997 and known as the Bone Marrow Program
Inspection.
(c) PROGRAM FOR INFORMATION AND EDUCATION.—Section 379
of the Public Health Service Act (42 U.S.C. 274k) is amended
by striking subsection (j), by redesignating subsections (c) through
(i) as subsections (e) through (k), respectively, and by inserting
after subsection (b) the following subsection:
‘‘(c) RECRUITMENT; PRIORITIES; INFORMATION AND EDUCATION.—
‘‘(1) RECRUITMENT; PRIORITIES.—The Registry shall carry
out a program for the recruitment of bone marrow donors.