[Congressional Record Volume 144, Number 64 (Tuesday, May 19, 1998)]
[House]
[Pages H3425-H3429]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
NATIONAL BONE MARROW REGISTRY REAUTHORIZATION ACT OF 1998
Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 2202) to amend the Public Health Service Act to revise and
extend the bone marrow donor program, and for other purposes, as
amended.
The Clerk read as follows:
H.R. 2202
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 unrelated 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 directors meeting the following
requirements:
``(1) Each member of the board shall serve for a term of
two years, and each such member may serve as many as three
consecutive two-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
approximately \1/3\ of the members of the board expire.
``(4) The membership of the board shall include
representatives 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 Transplantation of the Health Resources and Services
Administration.''.
(b) Program for Unrelated Marrow Transplants.--
(1) In general.--Section 379(b) of the Public Health
Service Act (42 U.S.C. 274k(b)) is amended by redesignating
paragraph (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 paragraph
(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 one 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 incorporate, to the extent practicable, the
findings and recommendations made
[[Page H3426]]
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. Such
program shall identify populations that are underrepresented
among potential donors enrolled with the Registry. In the
case of populations that are identified under the preceding
sentence:
``(A) The Registry shall give priority to carrying out
activities under this part to increase representation for
such populations in order to enable a member of such a
population, to the extent practicable, to have a probability
of finding a suitable unrelated donor that is comparable to
the probability that an individual who is not a member of an
underrepresented population would have.
``(B) The Registry shall consider racial and ethnic
minority groups (including persons of mixed ancestry) to be
populations that have been identified for purposes of this
paragraph, and shall carry out subparagraph (A) with respect
to such populations.
``(2) Information and education regarding recruitment;
testing and enrollment.--
``(A) In general.--In carrying out the program under
paragraph (1), the Registry shall carry out informational and
educational activities for purposes of recruiting individuals
to serve as donors of bone marrow, and shall test and enroll
with the Registry potential donors. Such information and
educational activities shall include the following:
``(i) Making information available to the general public,
including information describing the needs of patients with
respect to donors of bone marrow.
``(ii) Educating and providing information to individuals
who are willing to serve as potential donors, including
providing updates.
``(iii) Training individuals in requesting individuals to
serve as potential donors.
``(B) Priorities.--In carrying out informational and
educational activities under subparagraph (A), the Registry
shall give priority to recruiting individuals to serve as
donors of bone marrow for populations that are identified
under paragraph (1).
``(3) Transplantation as treatment option.--In addition to
activities regarding recruitment, the program under paragraph
(1) shall provide information to physicians, other health
care professionals, and the public regarding the
availability, as a potential treatment option, of receiving a
transplant of bone marrow from an unrelated donor.''.
(d) Patient Advocacy and Case Management.--Section 379 of
the Public Health Service Act (42 U.S.C. 274k), as amended by
subsection (c) of this section, is amended by inserting after
subsection (c) the following subsection:
``(d) Patient Advocacy; Case Management.--
``(1) In general.--The Registry shall establish and
maintain an office of patient advocacy (in this subsection
referred to as the `Office').
``(2) General functions.--The Office shall meet the
following requirements:
``(A) The Office shall be headed by a director.
``(B) The Office shall operate a system for patient
advocacy, which shall be separate from mechanisms for donor
advocacy, and which shall serve patients for whom the
Registry is conducting, or has been requested to conduct, a
search for an unrelated donor of bone marrow.
``(C) In the case of such a patient, the Office shall serve
as an advocate for the patient by directly providing to the
patient (or family members, physicians, or other individuals
acting on behalf of the patient) individualized services with
respect to efficiently utilizing the system under subsection
(b)(1) to conduct an ongoing search for a donor.
``(D) In carrying out subparagraph (C), the Office shall
monitor the system under subsection (b)(1) to determine
whether the search needs of the patient involved are being
met, including with respect to the following:
``(i) Periodically providing to the patient (or an
individual acting on behalf of the patient) information
regarding donors who are suitability matched to the patient,
and other information regarding the progress being made in
the search.
``(ii) Informing the patient (or such other individual) if
the search has been interrupted or discontinued.
``(iii) Identifying and resolving problems in the search,
to the extent practicable.
``(E) In carrying out subparagraph (C), the Office shall
monitor the system under subsection (b)(1) to determine
whether the Registry, donor centers, transplant centers, and
other entities participating in the Registry program are
complying with standards issued under subsection (e)(4) for
the system for patient advocacy under this subsection.
``(F) The Office shall ensure that the following data are
made available to patients:
``(i) The resources available through the Registry.
``(ii) A comparison of transplant centers regarding search
and other costs that prior to transplantation are charged to
patients by transplant centers.
``(iii) A list of donor registries, transplant centers, and
other entities that meet the applicable standards, criteria,
and procedures under subsection (e).
``(iv) The posttransplant outcomes for individual
transplant centers.
``(v) Such other information as the Registry determines to
be appropriate.
``(G) The Office shall conduct surveys of patients (or
family members, physicians, or other individuals acting on
behalf of patients) to determine the extent of satisfaction
with the system for patient advocacy under this subsection,
and to identify ways in which the system can be improved.
``(3) Case management.--
``(A) In general.--In serving as an advocate for a patient
under paragraph (2), the Office shall provide individualized
case management services directly to the patient (or family
members, physicians, or other individuals acting on behalf of
the patient), including--
``(i) individualized case assessment; and
``(ii) the functions described in paragraph (2)(D)
(relating to progress in the search process).
``(B) Postsearch functions.--In addition to the case
management services described in paragraph (1) for patients,
the Office may, on behalf of patients who have completed the
search for an unrelated donor, provide information and
education on the process of receiving a transplant of bone
marrow, including the posttransplant process.''.
(e) Criteria, Standards, and Procedures.--Section 379(e) of
the Public Health Service Act (42 U.S.C. 274k), as
redesignated by subsection (c) of this section, is amended by
striking paragraph (4) and inserting the following:
``(4) standards for the system for patient advocacy
operated under subsection (d), including standards requiring
the provision of appropriate information (at the start of the
search process and throughout the process) to patients and
their families and physicians;''.
(f) Report.--Section 379 of the Public Health Service Act,
as amended by subsection (c) of this section, is amended by
adding at the end the following subsection:
``(l) Annual Report Regarding Pretransplant Costs.--The
Registry shall annually submit to the Secretary the data
collected under subsection (b)(7) on comparisons of
transplant centers regarding search and other costs that
prior to transplantation are charged to patients by
transplant centers. The data shall be submitted to the
Secretary through inclusion in the annual report required in
section 379A(c).''.
(g) Conforming Amendments.--Section 379 of the Public
Health Service Act, as amended by subsection (c) of this
section, is amended--
(1) in subsection (f), by striking ``subsection (c)'' and
inserting ``subsection (e)''; and
(2) in subsection (k), by striking ``subsection (c)(5)(A)''
and inserting ``subsection (e)(5)(A)'' and by striking
``subsection (c)(5)(B)'' and inserting ``subsection
(e)(5)(B)''.
SEC. 3. RECIPIENT REGISTRY.
Part I of title III of the Public Health Service Act (42
U.S.C. 274k et seq.) is amended by striking section 379A and
inserting the following:
``SEC. 379A. BONE MARROW SCIENTIFIC REGISTRY.
``(a) Establishment of Recipient Registry.--The Secretary,
acting through the Registry under section 379 (in this
section referred to as the `Registry'), shall establish and
maintain a scientific registry of information relating to
patients who have been recipients of a transplant of bone
marrow from a biologically unrelated donor.
``(b) Information.--The scientific registry under
subsection (a) shall include information with respect to
patients described in subsection (a), transplant procedures,
and such other information as the Secretary determines to be
appropriate to conduct an ongoing evaluation of the
scientific and clinical status of transplantation involving
recipients of bone marrow from biologically unrelated donors.
``(c) Annual Report on Patient Outcomes.--The Registry
shall annually submit to the Secretary a report concerning
patient outcomes with respect to each transplant center. Each
such report shall use data collected and maintained by the
scientific registry under subsection (a). Each such report
shall in addition include the data required in section 379(l)
(relating to pretransplant costs).''.
SEC. 4. AUTHORIZATION OF APPROPRIATIONS.
Title III of the Public Health Service Act (42 U.S.C. 241
et seq.) is amended--
(1) by transferring section 378 from the current placement
of the section and inserting the section after section 377;
and
(2) in part I, by inserting after section 379A the
following section:
``SEC. 379B. AUTHORIZATION OF APPROPRIATIONS.
``For the purpose of carrying out this part, there are
authorized to be appropriated $18,000,000 for fiscal year
1999, and such sums as may be necessary for each of the
fiscal years 2000 through 2003.''.
SEC. 5. STUDY BY GENERAL ACCOUNTING OFFICE.
(a) In General.--During the period indicated pursuant to
subsection (b), the Comptroller General of the United States
shall conduct a study of the National Bone Marrow Donor
Registry under section 379 of the Public Health Service Act
for purposes of making determinations of the following:
(1) The extent to which, relative to the effective date of
this Act, such Registry has increased the representation of
racial and ethnic minority groups (including persons of mixed
ancestry) among potential donors of bone marrow who are
enrolled with the Registry, and whether the extent of
increase results in a level of representation that meets the
standard established in subsection (c)(1)(A) of such section
379 (as added by section 2(c) of this Act).
(2) The extent to which patients in need of a transplant of
bone marrow from a biologically unrelated donor, and the
physicians of such patients, have been utilizing the Registry
in the search for such a donor.
[[Page H3427]]
(3) The number of such patients for whom the Registry began
a preliminary search but for whom the full search process was
not completed, and the reasons underlying such circumstances.
(4) The extent to which the plan required in section
2(b)(2) of this Act (relating to the relationship between the
Registry and donor centers) has been implemented.
(5) The extent to which the Registry, donor centers, donor
registries, collection centers, transplant centers, and other
appropriate entities have been complying with the standards,
criteria, and procedures under subsection (e) of such section
379 (as redesignated by section 2(c) of this Act).
(b) Report.--A report describing the findings of the study
under subsection (a) shall be submitted to the Congress not
later than October 1, 2001. The report may not be submitted
before January 1, 2001.
SEC. 6. COMPLIANCE WITH NEW REQUIREMENTS FOR OFFICE OF
PATIENT ADVOCACY.
With respect to requirements for the office of patient
advocacy under section 379(d) of the Public Health Service
Act, the Secretary of Health and Human Services shall ensure
that, not later than 180 days after the effective date of
this Act, such office is in compliance with all requirements
(established pursuant to the amendment made by section 2(d))
that are additional to the requirements that under section
379 of such Act were in effect with respect to patient
advocacy on the day before the date of the enactment of this
Act.
SEC. 7. EFFECTIVE DATE.
This Act takes effect October 1, 1998, or upon the date of
the enactment of this Act, whichever occurs later.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Brown) each
will control 20 minutes.
The Chair recognizes the gentleman from Florida (Mr. Bilirakis).
General Leave
Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days within which to revise and extend their
remarks on H.R. 2202 and to insert extraneous material on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Florida?
There was no objection.
(Mr. BILIRAKIS asked and was given permission to revise and extend
his remarks.)
Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I am delighted this afternoon, truly delighted, to ask
my colleagues in the House to support H.R. 2202, the National Bone
Marrow Registry Reauthorization Act of 1998. I would acknowledge the
hard work of Mr. Marc Wheat of the Majority staff, Mr. John Ford of the
Minority staff, and other staffers from Mr. Young's office and staffers
in the Senate in the process of working out this legislation.
I know that many of my colleagues in the House have heard from
individuals whose lives were saved by this program, but many Members
may not know that this legislation has been championed by a man whose
own daughter was saved by the program. Coincidentally, if that is a
proper word, he decided to go forward with this program quite a few
years ago, and it was after he decided to go through with this program
and put it into effect that his daughter was saved by the program.
{time} 1545
That, of course, I am referring to my friend and colleague, the
gentleman from Florida (Mr. Bill Young).
The gentleman from Florida (Mr. Young) secured the original
appropriation which established this important program in early 1987
through a grant to the Department of the Navy. In this Congress he has
worked tirelessly to secure reauthorization of the program, and I was
pleased to support his effort as a cosponsor of H.R. 2202.
In 1997 the National Marrow Donor Program was responsible for
facilitating 1,280 unrelated marrow transplants, men and women who
never met each other but knew that through the simple procedure of
marrow donation a life would be saved.
There are approximately 5,000 to 7,000 Americans who could benefit
from potentially lifesaving unrelated donor transplants, and yet for
many, matches cannot be found yet. But thanks to the great work of the
men and women in this program, over 3 million Americans have
volunteered to be listed confidentially in a registry of the national
marrow donor program.
Through innovative cooperation with programs in other countries,
including Germany, France, Israel, South Africa, Greece, among others,
patients can search for their tissue type through a worldwide network
of 37 registries in 29 countries. Through this network the National
Marrow Donor Program has direct access to over 4 million volunteer
donors worldwide.
The language in the bill under consideration today is identical to an
amendment approved by voice vote in the Subcommittee on Health and
Environment which I chair. My substitute amendment represented a
consensus position developed through long negotiations between the
majority and minority of the Committee on Commerce and the Committee on
Labor and Human Resources in the other body, the Department of Health
and Human Resources, the Food and Drug Administration, the National
Institutes of Health, the National Bone Marrow Donor Program itself,
and many associations and interested parties who want to see this
authorization pass this year.
Mr. Speaker, I want to again express my great appreciation on behalf
of all of us, and on behalf of the many people out there who have
benefited from this program and who will continue to benefit, and to
the gentleman from Florida (Mr. Young) for his efforts to secure this
reauthorization.
Mr. Speaker, I urge all of my colleagues to join me in expressing
their strong support for passage of this important legislation.
Mr. Speaker, I reserve the balance of my time.
Mr. BROWN of Ohio. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I rise in support of the legislation we are considering
today to reauthorize the National Bone Marrow Donor Registry Program.
This program has given thousands of patients suffering from diseases
like leukemia a second chance at life.
I would like to recognize the work of my chairman, the gentleman from
Florida (Mr. Mike Bilirakis) and the sponsor of this legislation, the
gentleman from Florida (Mr. Bill Young), in moving this important bill
to the floor.
I extend a special thanks to the gentlewoman from Southern California
(Ms. Juanita Millender-McDonald), who has worked tirelessly to include
provisions in the bill to help meet the needs of minority and mixed-
race patients. For patients who suffer from terminal diseases, such as
cancer and blood and immune system disorders, the transplantation of
bone marrow offers their only hope for a cure.
In 1987, with a small grant to the Department of the Navy, the
National Marrow Donor Program was established to help facilitate bone
marrow matches between patients and donors and maintain a registry of
individuals willing to donate marrow. I am pleased that since its
inception 12 years ago NMDP has facilitated over 6,500 marrow
transplants between unrelated patients and donors around the world.
Further, the annual number of transplants has increased by 53 percent
between 1994 and 1997, since NMDP was transferred to Health Resources
Services Administration.
I am pleased the legislation we are considering today builds upon
this success by fully funding current and new innovative educational
campaigns to increase the number of willing donors which will
obviously, in turn, increase the number of successful transplantations.
Working with patients and physicians, NMDP and its partners can improve
outreach and increase awareness of the importance of marrow donation.
This work is especially important if we are going to continue to
increase the number of minorities, such as African Americans and
Latinos, who are successfully matched with willing donors.
Mr. Speaker, we can all take pride in the accomplishments of this
lifesaving program. I am hopeful we can work together to ensure that
more sick patients have access to these lifesaving therapies by passing
this legislation today.
Mr. Speaker, I reserve the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I gladly yield such time as he may
consume to the gentleman from Florida (Mr. Bill Young), my friend,
neighbor, and colleague.
(Mr. YOUNG of Florida asked and was given permission to revise and
extend his remarks.)
Mr. YOUNG of Florida. Mr. Speaker, I thank the gentleman for yielding
me the time.
[[Page H3428]]
Mr. Speaker, I would have to say this is an exciting moment. This
legislation, we have worked long and hard to get it in a condition that
everybody could support. The basic idea here is that it extends the
authorization for the National Marrow Donor Program, which, as my
distinguished friends the gentleman from Florida (Mr. Bilirakis) and
the gentleman from Ohio (Mr. Brown) have said, is a lifesaver.
It is actually a miracle. This process allows people who really had
no chance for life, there was no outlook, they were not going to
survive, but when the opportunity to have a bone marrow transplant came
about and we were able to find enough donors to create a registry,
peoples' lives have been saved. People have had a second chance for
life where none existed before.
Mr. Speaker, I want to thank the gentleman from Florida (Mr.
Bilirakis) and the gentleman from Ohio (Mr. Brown) as the ranking
minority member, and every Member of this Congress. This program, from
when we began in 1985, we began to try to create this program, and we
hit a lot of doors that were not open to us. We were told by people
high up in the realm of medical research that this would never work. In
fact, one of our committees was told in testimony, well, you will be
lucky if you could ever get 50,000 people willing to be a bone marrow
donor.
Mr. Speaker, as we speak today, there are more than 3 million
Americans who are in that registry with their marrow typed and ready to
be a donor. In addition, as the gentleman from Florida (Mr. Bilirakis)
has pointed out, we have agreements with many other nations, and we are
exchanging patients and exchanging bone marrow across the ocean itself,
saving lives around the world.
I want to thank the many people in the Congress who have made it
possible to keep this program going. I want to thank the many people in
the medical community who have been heroes in this effort. I want to
thank the millions of donors who have been willing to give another
person a second chance for life. This Nation of ours is full of heroes,
and the list is lengthy. I wish we had time to mention all of them by
name, but obviously we do not.
Mr. BROWN of Ohio. Mr. Speaker, I yield 4 minutes to my friend, the
gentlewoman from California (Ms. Millender-McDonald), who has shown
great leadership in coming to our committee and on the floor on this
issue.
Ms. MILLENDER-McDONALD. Mr. Speaker, I thank the gentleman for
yielding me the time, and for his comments.
Mr. Speaker, I am so proud to be able to stand before the Members
today, a day when the House will finally vote on one of the most
important pieces of legislation affecting the health of minorities and
their families. For more than a year now I have been working to
increase the number of minorities and people of mixed ancestry on the
National Bone Marrow Registry, not only through legislation but through
coordinated outreach efforts throughout this country.
I would like to thank the gentleman from Florida for working so
closely with me to make sure that when we reauthorize this program, we
do everything possible to increase the number of minorities and people
of mixed ancestry.
Every year, Mr. Speaker, more than 30,000 people are diagnosed with
one of the 60 diseases that can be cured with a bone marrow transplant.
Of those, only 30 percent will have a family member who is a marrow
match. That means 20,000 people each year need to find an unrelated
marrow donor.
There are almost 2 million registered donors in this country, an
increase of more than 260 percent since the beginning of 1993. But of
these impressive numbers of transplants, Mr. Speaker, minorities
continue to receive far fewer transplants.
In fact, in 1997, only 65 African Americans received transplants, 105
Hispanic Americans received transplants, and approximately 37 people of
mixed ancestry received transplants. During that same year, however,
1,021 caucasians received transplants; so we can see, Mr. Speaker, the
critical need for this.
Again, let me thank the gentleman from Florida (Mr. Young) for his
leadership on this issue. I urge all of my colleagues to join me in
voting yes for H.R. 2202. The day has finally come to close the gap on
this critical minority health care disparity.
Mr. YOUNG of Florida. Mr. Speaker, will the gentlewoman yield?
Ms. MILLENDER-McDONALD. I yield to the gentleman from Florida.
Mr. YOUNG of Florida. I just wanted to express to the Speaker and the
Members, Mr. Speaker, my appreciation for the really hard work that the
gentlewoman has done in this effort.
We introduced the bill almost a year ago, as the gentlewoman is well
aware, and because of the bureaucracy involved, it has taken a while,
but the gentlewoman has stayed right there on track and helped keep it
moving. I mentioned many of the heroes, and the gentlewoman is one of
the heroes at the top of the list.
Ms. MILLENDER-McDONALD. Mr. Speaker, I thank the gentlemen from
Florida, Mr. Young and Mr. Bilirakis, for their leadership.
Mr. BILIRAKIS. Mr. Speaker, I yield such time as he may consume to
the gentleman from Michigan (Mr. Upton).
(Mr. UPTON asked and was given permission to revise and extend his
remarks.)
Mr. UPTON. Mr. Speaker, I rise this afternoon in strong support of
H.R. 2202, the National Bone Marrow Registry Reauthorization Act of
1998.
I want to also commend my good friend and colleague, the gentleman
from Florida (Mr. Young) for introducing and working hard and
diligently for the consideration of this legislation, and my
subcommittee chairman, the gentleman from Florida (Mr. Bilirakis) and
his ranking member, the gentleman from Ohio (Mr. Brown), for the smooth
passage through the committee process.
Mr. Speaker, this program is a vital one. This holds out promise for
nearly the approximately 12,000 people each year who are diagnosed with
diseases for which bone marrow transplantation may offer the
possibility of a cure.
The National Bone Marrow Donor Registry established by this program
provides for a central registry of bone marrow donors, linking a
network of 100 donor centers, 111 transplant centers, and 11
recruitment groups across the country.
The registry is also a research organization, studying the
effectiveness of unrelated marrow transplants. This program has been
effective in increasing the availability of unrelated bone marrow
transplants, which have grown in number from 200 in 1989 to almost
1,300 in 1997 last year.
In my State of Michigan our donor centers have, as of March of this
year, registered over 92,000 donors and facilitated some 291
transplants. However, estimates suggest that those who could benefit
from bone marrow transplants far outnumber the actual recipients by a
2- or 3-to-1 margin. All of us have individuals in our districts hoping
desperately that they will be successfully matched with a volunteer
donor. For too many, that hope will not be realized.
Mr. Speaker, this is particularly true for minority individuals, who
are underrepresented in the donor registry. This legislation that we
are considering this afternoon strengthens the program's focus on
minority recruitment.
I encourage all of us here to register as a volunteer donor. I did,
because of my relationship with the gentleman from Florida (Mr. Young).
The process is very simple. You have to go to a donor center and give a
blood sample. That is all it is. You can literally give the gift of
life to another individual through this simple act.
Mr. DELAHUNT. Mr. Speaker, I rise in strong support of H.R. 2202, the
National Bone Marrow Registry Reauthorization Act of 1998.
For over a decade, the National Bone Marrow Program has brought hope
to the over 30,000 patients diagnosed each year with leukemia and more
than 60 otherwise fatal blood disorders. From modest beginnings, the
program now maintains a registry of millions of potential donors.
H.R. 2202 will expand and improve the National Bone Marrow Registry,
establishing new services to help patients locate donors, redoubling
efforts to recruit donors within underserved populations, and
encouraging continued advances in the science of marrow
transplantation.
For me, this bill has very personal meaning. It calls to mind a very
special young woman and her family in Duxbury, Massachusetts, whom I
have had the honor of knowing since I learned of their story in the
local press.
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The young woman is Brittany Lambert, who suffers from a rare blood
disorder called myelodysplasia, for which she received a bone marrow
transplant from an unrelated donor found through the registry. When
Brittany's first transplant failed, she needed a second one. Through it
all, she has shown qualities of courage and tenacity that would make
any parent proud.
Brittany has been lucky in at least one respect: her parents, Jim and
Linda Haehnel, and her sister, Brianne, have been with her every step
of the way. In fact, when I met Jim Haehnel back in February of 1997,
he was organizing a screening drive for Brittany at an Air National
Guard base in my district. I was among the 300 people who registered as
potential donors on that occasion, and I promised Jim that I would do
everything I could to see that more people have the opportunity to join
in this effort.
The Haehnel family has shown tremendous fortitude in the face of
repeated setbacks. They have continued to do everything they can to see
that kids like Brittany get a second chance at life.
It is because of the heroism and selflessness of people like Brittany
and her family that this program exists. And it is because of them that
I feel so strongly about this effort. I am proud to join with my
colleague, Mr. Young, in cosponsoring this legislation, and I hope that
all of my colleagues will give it their support.
Mr. PORTER. Mr. Speaker, I rise to commend my good friend, Bill
Young, for his tireless efforts to promote and strengthen the National
Bone Marrow Donor Registry. There is no stronger advocate in the
Congress for this vital public policy initiative than Bill. His work
has provided a second chance at life for thousands of individuals who
suffer from debilitating illness and fatal blood disease. Because of
Bill's outstanding leadership, the registry has grown tremendously. I
am proud to cosponsor this vital legislation and I will continue to
support Bill's important efforts.
Mr. BROWN of Ohio. Mr. Speaker, I have no further requests for time,
and I yield back the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I have no further requests for time, and
I yield back the balance of my time.
The SPEAKER pro tempore (Mr. Shimkus). The question is on the motion
offered by the gentleman from Florida (Mr. Bilirakis) that the House
suspend the rules and pass the bill, H.R. 2202, as amended.
The question was taken; and (two-thirds having voted in favor
thereof) the rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
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