[Congressional Record Volume 149, Number 170 (Friday, November 21, 2003)]
[House]
[Pages H12157-H12159]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SUPPORTING NATIONAL MARROW DONOR PROGRAM AND OTHER BONE MARROW DONOR
PROGRAMS
Mr. WALDEN of Oregon. Mr. Speaker, I move to suspend the rules and
agree to the concurrent resolution (H. Con. Res. 206) supporting the
National Marrow Donor Program and other bone marrow donor programs and
encouraging Americans to learn about the importance of bone marrow
donation.
The Clerk read as follows:
H. Con. Res. 206
Whereas up to 30,000 people each year are diagnosed with
leukemia or other blood diseases and approximately 20,000
will not find a marrow donor match within their family and
must rely upon strangers;
Whereas diseases such as leukemia, aplastic anemia, and
defective immune systems can lead to a rapid deterioration in
an individual's health and ultimately the individual's death
if potential marrow donors are not identified;
Whereas volunteers in donor programs provide a life-saving
service to those that are afflicted with leukemia or other
blood diseases;
Whereas since the founding of the National Marrow Donor
Program in 1986, it has facilitated more than 15,000
unrelated transplants for patients with leukemia or other
blood diseases;
Whereas the National Marrow Donor Program provides
potential donors with information on how to become a bone
marrow donor;
Whereas the National Marrow Donor Program has a worldwide
reach and a large database of potential donors;
Whereas the National Marrow Donor Program currently
facilitates more than 160 transplants each month; and
Whereas the National Marrow Donor Program makes a positive
impact on the lives of thousands of Americans: Now,
therefore, be it
Resolved by the House of Representatives (the Senate
concurring), That the Congress--
(1) supports the goals and ideals of the National Marrow
Donor Program and other bone marrow donor programs; and
(2) encourages all Americans to learn about the importance
of bone marrow donation and to discuss such donation with
their families and friends.
The SPEAKER pro tempore (Mr. Simmons). Pursuant to the rule, the
gentleman from Oregon (Mr. Walden) and the gentleman from Ohio (Mr.
Brown) each will control 20 minutes.
The Chair recognizes the gentleman from Oregon (Mr. Walden).
General Leave
Mr. WALDEN of Oregon. Mr. Speaker, I ask unanimous consent that all
Members may have 5 legislative days within which to revise and extend
their remarks and to insert extraneous material on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Oregon?
There was no objection.
Mr. WALDEN of Oregon. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I am pleased that the House is considering House
Concurrent Resolution 206 introduced by the gentleman from Texas (Mr.
Burgess) to recognize the important work that the National Marrow Donor
Program and other bone marrow donor programs do to save lives.
Bone marrow transplants are often one of the last options available
to patients struggling to fight debilitating and often terminal
illnesses. Unfortunately, finding a bone marrow match is very
difficult. In fact, every year nearly two-thirds of patients in need of
a bone marrow transplant will not find a marrow donor match within
their family and, therefore, must rely on the help of strangers.
Each month the National Bone Marrow Registry coordinates more than
150 transplants. With a diverse registry of more than 4 million
potential bone marrow and cord blood donors, the National Bone Marrow
Registry offers hope to thousands of patients. Just last month, the
House approved H.R. 3034, the National Bone Marrow Donor Registry
Reauthorization Act, to reauthorize the national bone marrow registry
for an additional 5-year period.
Since 1986, the National Bone Marrow Donor Program has facilitated
more than 15,000 transplants for patients. I hope the Senate will join
us soon in extending this program to guarantee that thousands more will
benefit. This resolution will raise awareness about the bone marrow
donor programs, and will encourage more Americans to donate, and I urge
all of my colleagues to support this resolution today.
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 commend the gentleman from Texas (Mr. Burgess) for
raising awareness regarding the importance of bone marrow donation.
There are at least 20,000 Americans today who need a bone marrow
transplant but cannot find a compatible donor within their own family.
National Marrow Awareness Month is a vehicle for encouraging more
people to join the bone marrow registry, a noble goal, and it is right
that Congress acknowledge the importance of this month.
But, Mr. Speaker, the timing is unfortunate. The Republican majority
today is giving this body fewer than 24 hours to consider legislation
which will have a dramatic impact on the financial security of 39
million retirees and disabled Americans, as well as their families.
This bill takes $400 billion out of taxpayers' pockets and puts much of
that money in the pockets of the drug industry and the insurance
industry, the two industries that sat in back rooms with Republican
leaders and wrote this bill. Every American has a stake in the outcome
of this. Less than 24 hours to review, debate and vote on an 1,100-page
bill that erects a brand new private insurance system for stand-alone
drug coverage which replaces tried and true Medicare. The bill features
such a meager drug benefit that seniors will still be unable to afford
the medicines they need, a bill that creates a fast-track process to
expedite reductions in Medicare benefits, a bill that makes different
seniors pay different premiums for the exact same coverage, and a bill
that launches a private insurance experiment, privatizing Medicare,
forcing millions of seniors in this country to pay more or join an HMO.
We received that bill yesterday, that 1,100-page Medicare bill, and are
being forced to vote on that bill today.
With all due respect, I support this Burgess legislation and applaud
the gentleman's efforts, but we need every minute we can get to try to
get a handle on just how dramatically this Medicare privatization bill
will turn our world upside down.
Mr. Speaker, we all know what is going to happen tonight. We have
seen this same scenario play out month after month this year. In April,
it started where in the middle of the night Congress passed
contentious, important tax legislation by a handful of votes. Every
single month during the summer, Congress voted on important,
controversial legislation: Head Start, budget reconciliation, the tax
cut, Medicare, last year the trade promotion bill authority, always
between
[[Page H12158]]
12 midnight and four in the morning, always in the dead of night,
always on Thursday night so the papers did not pick it up until
Saturday, always when the media had gone to bed and the American public
had turned off their television sets, and never appearing in the paper
the next day, always held over to Saturday's paper because of that.
I hope, Mr. Speaker that does not happen with this Medicare bill
tonight. I hope we can actually debate it during the late afternoon and
early evening so people in this country can see what in fact is in it.
On this legislation we are considering today, I appreciate the
efforts of the gentleman from Texas (Mr. Burgess), but on a day when
this body is asked to participate in such remarkably irresponsible
decisionmaking on the most important health care vote of this session,
no Member right now can devote to this Burgess resolution the attention
it deserves.
Mr. Speaker, I reserve the balance of my time.
Mr. WALDEN of Oregon. Mr. Speaker, I yield such time as he may
consume to the gentleman from Texas (Mr. Burgess), the author of this
measure.
Mr. BURGESS. Mr. Speaker, I thank the gentleman from Louisiana (Mr.
Tauzin) and the gentleman from Oregon (Mr. Walden) for bringing this
resolution to the floor. I would like to thank the leadership for
allowing this resolution to come to the floor late in the session; and
I would disagree that the timing is unfortunate, I think the timing is
perfect. I would also like to thank the staff of the Committee on
Energy and Commerce for their hard work on this issue.
Bone marrow donation is critical to millions of cancer patients.
Every year, nearly 30,000 people are diagnosed with leukemia or other
treatable blood diseases. Oftentimes, the only course of treatment is
donation of bone marrow from one person to another.
The House Concurrent Resolution 206 urges Americans to register with
the National Marrow Donor Registry. Since the National Donor Registry
was founded some 16 years ago, it has facilitated the more than 15,000
donations for patients with blood disorders. The registry now has 5
million volunteers. I am one of those volunteers, having joined the
registry in 1999. The 15,000 volunteers that have been called on to
donate marrow to sick and dying patients have saved thousands of lives,
but they have impacted even thousands more by saving the lives of a
mother, a father, a brother, a sister, a son or a daughter, keeping
loving families whole and communities intact.
{time} 1330
On June 7 of this year, I had the opportunity to celebrate the life
of one of my constituents who had been diagnosed with non-Hodgkin's
lymphoma, Mr. Cliff Ackerman. A donor to the national marrow donor
registry program saved Mr. Ackerman's life. Mr. Ackerman was diagnosed
with cancer in March of 1998 and did not have a stem cell match in his
family. He was forced to find a match through the National Bone Marrow
Registry. A match was found from a donor in Washington, D.C., Mr. Perry
Apelbaum. Perry is a member of the House Judiciary Committee staff. Mr.
Apelbaum joined the registry in 1990. As fate would have it when Mr.
Ackerman got sick, Mr. Apelbaum turned out to be a perfect match. This
example underscores how important the program is: a congressional
staffer here in Washington, D.C. turned out to save the life of a man
in my district in Lewisville, Texas.
The marrow donor program has helped thousands of families who will
experience a second chance to enjoy life with a child, with a husband
or wife, or with a brother or sister. I thank the countless number of
heroes who have given the gift of life or who are waiting on the donor
list to provide a lifesaving service to those who are afflicted with
leukemia or other blood disorders.
The House has already reauthorized the marrow donor program this year
in a bipartisan manner. It is now up to the other body to complete this
work. We hope that they will. But in the meantime, we must continue to
raise the profile of this important program, and this resolution does
just that.
Mr. BROWN of Ohio. Mr. Speaker, I have no further requests for time,
and I yield back the balance of my time.
Mr. WALDEN of Oregon. Mr. Speaker, I yield myself the balance of my
time.
I urge my colleagues to support this resolution. I think it is
critically important that we do that to move this program forward.
Mr. YOUNG of Florida. Mr. Speaker, I rise in strong support of H.
Con. Res. 206, legislation expressing Congressional support for the
National Marrow Donor Program during this National Marrow Awareness
Month.
At the outset, let me thank my colleague from Texas, Mr. Burgess, for
sponsoring this legislation, and Chairman Tauzin of the Energy and
Commerce Committee, and the Chairman of the Subcommittee on Health, my
colleague and neighbor from Florida Mr. Bilirakis, for helping expedite
consideration of this legislation.
Mr. Speaker, the National Marrow Donor Program is a true modern
medical miracle that saves lives here and throughout the world every
single day of the year. Since its establishment more than 16 years ago,
the registry has grown to more than 5,000,000 volunteers. These are
true volunteers in every sense of the word. They have given of their
time to take a simple blood test to be listed in the national registry.
For the more than 17,000 volunteers who have been called upon to donate
marrow, they have undergone a relatively simple surgical procedure to
donate their bone marrow to save the life of a man, woman or child with
leukemia or one of 60 otherwise fatal blood disorders.
Earlier this year in a sign of strong Congressional support, the
House unanimously approved my legislation, H.R. 3034, the National Bone
Marrow Donor Registry Reauthorization Act, to continue the work of
registry's work for another five years. We look forward to its passage
in the other body.
The National Marrow Donor Program is a precious national resource,
and I want to pay tribute to the men and women there who work
tirelessly to ensure that Americans in need of life-saving transplants
receive the bone marrow, peripheral blood steam cells, or umbilical
cord blood they need.
Recognizing the need for a single source of information, Congress
endorsed by request in 1986 for a small appropriation to the United
States Navy to establish the National Bone Marrow Donor Registry. Our
goal was to improve the facilitation of bone marrow transplants by
coordinating adult, volunteer marrow donors as well as a full range of
supporting services to donors, patients and physicians. With the funded
I have provided every year since through appropriations bills for the
Navy and the Department of Health and Human Services, The National
Marrow Donor Program has operated the Registry first under contract
with the Navy and now under a competitively awarded contract with the
Department of Health and Human Services. During that time, I have
watched proudly as the Registry has developed into the international
leader in marrow, blood stem cell, and umbilical cord blood
transplantation.
Having had the great pleasure to meet with hundreds of donors and
patients, I can tell you that donating bone marrow is a true life-
changing experience. The experience of giving life to another human
being is beyond mere words. Today, the National Marrow Donor Program
remains the single source for physicians and patients searching for
marrow to treat a variety of diseases. Through a network of 91 Donor
Centers, 11 Cord Blood Banks, 150 Transplant Centers, and 19
International Cooperative Registries, it allows physicians to select
for the best matched source of adult stem cells whether it be from
volunteer marrow or blood donors or umbilical cord blood units. This
large network has made marrow donation a world-changing experience. On
any given day, bone marrow from our registry is being flown around the
world at the same time bone marrow is being flown to a U.S. hospital
through our formal relationship with the international registries.
A diverse Registry of volunteer bone marrow donors has been
recruited. And now the Registry also lists more than 28,000 units of
umbilical cord blood for potential transfer. Additionally, the National
Marrow Donor Program has helped more than 250 patients receive cord
blood transplants since the inclusion of umbilical cord blood units in
the Registry began in 1999. Working with the National Marrow Donor
Program and individually, the NMDP network of 11 cord blood banks have
provided more than 881 cord blood units for transplantation since 1997.
This network represents the single largest number of cord blood
donations in the U.S.--232--in the past year.
The National Marrow Donor Program also recognizes the importance of
maintaining an infrastructure that supports the Registry. To help
physicians maximize the time they spend with their patients and
minimize the time it takes to search the Registry, the Program has
developed a real-time, electronic searching
[[Page H12159]]
database that links more than 400 partnering organizations. The
resulting transplants are made possible through the efforts of millions
of volunteers and professionals, connected through an award-winning
integrated information system that quickly records, analyzes, and
electronically transmits millions of pieces of critical medical data
every day to and from hundreds of medical organizations.
There is more to providing marrow and other sources of blood stem
cells than simply helping physicians search the Registry. Patients also
need assistance. Therefore, the Program provides support services for
individual patients to help them through the transplant process. The
Patient Advocacy program provides patients with services such as
information about transplants, assistance in intervening with insurers
to determine coverage, and financial assistance. These efforts include
patients assistance funds, case management services, referring
physician education, consultation on the best match sources, and
accelerated searching to facilitate transplants with an urgent need.
The Program also provides support to patients after the transplant
occurs to ensure that they can return to a normal, healthy life.
Without this support, many patients would not be able to obtain life-
saving transplants.
Even with these wonderful successes, we all recognize that the number
of donors is not sufficient to meet the needs of every American. Each
year more than 30,000 children and adults are diagnosed with life-
threatening blood diseases, such as leukemia and plastic anemia, as
well as certain immune system and genetic disorders for which a marrow
or blood stem cell transplant can be a cure. These transplants require
matching certain tissue traits of the donor and patient. Because these
traits are inherited, a patient's most likely match is someone of the
same heritage. Thus, men and women of the National Marrow Donor Program
work continuously to recruit more donors, especially minorities who
historically have difficulty finding matches. Since 1995, the Program
has more than tripled the number of minority donors.
Mr. Speaker, at a time when our nation seeks to bring the nations and
the people of the world closer together, to live in peace, and better
understand each other, we can look to the National Marrow Donor Program
as one important way to achieve these goals. There is no greater cause
than to save a life, and with the ongoing support of every member of
this House we can adopt this Resolution today to support the many
heroes who have contributed to the work and vision of this program.
From the early days when we sought a home for the program, and had a
few doors slammed in our faces, there was Admiral Elmo Zumwalt, Jr. and
Dr. Bob Graves. There was Captain Bob Hartzman of the United States
Navy who connected us with the Navy Medical Command where we
appropriated the first small amount of funding to give birth to the
program. There were the early medical pioneers such as Dr. Robert Good,
Dr. John Hansen, Dr. Donnell Thomas, and Dr. Jerry Barbosa, all of whom
helped perfect the science of marrow transplantation and who assisted
us in our legislative quest to establish a federal registry.
There were the members of Congress, past and present, who stood by me
as I sought funding to start up the program, to recruit marrow donors,
and to perfect the marrow transplant procedures. There were my
colleagues on the Appropriations and Energy and Commerce Committees who
helped expedite these funding requests and the consideration of several
authorization bills.
There were the members of the board of the National Marrow Donor
Program and the Marrow Foundation, who have volunteered their time to
establish a finely tuned international registry that quickly and
efficiently matches marrow donors and patients to give them the best
chance of a successful transplant. There is the staff of the NMDP,
based in Minneapolis, Minnesota but with operations throughout our
nation, who manage the flow of information, marrow and cord blood
around the world. And there is the staff and medical teams at the
transplant and donor centers who use their medical expertise to
complete the transplantation procedures.
Finally, there are the true heroes of the program, the patients and
donors. Every patient that has sought a transplant has helped the
doctors and researchers perfect the marrow or cord blood transplant
procedure to improve the outcome for every future patient. And every
donor who has signed up for the national registry has given the
ultimate gift of life. They are the heroes without whom we would not
have this tremendously successful national and international life-
saving program.
Mr. Speaker, in closing, let me again thank the sponsors of this
Resolution. Let me thank every member of this House for their
partnership in helping us continue the work of the National Marrow
Donor Program. With your support, we are giving hope to thousands of
patients here and throughout the world today and into the future.
I call on my colleagues to continue their support for the National
Marrow Donor Program and its important mission. Whether it is working
with physicians and patients to find the best source for a transplant,
helping a patient navigate the complexities of the health care system
and insurance, or encouraging more Americans to become part of the
life-saving Registry, the Program has proven itself a critical part of
our Nation's health care infrastructure. Today, we proudly support the
work of the National Marrow Donor Program during National Marrow
Awareness Month and share in the celebration of the program's
successes. However, our work is not finished. We must continue to help
all Americans in need of umbilical cord blood, bone marrow, or
peripheral blood stem cells to have access to the life saving services
and the patient advocacy programs of the National Marrow Donor Program.
Ms. BORDALLO. Mr. Speaker, I wholeheartedly support House Concurrent
Resolution 206 supporting the National Marrow Donor Program and other
bone marrow donor programs and encouraging Americans to learn about the
importance of bone marrow donation. I commend Mr. Burgess for
introducing this legislation.
The importance of National Marrow Donor Program (NMDP) and other bone
marrow donor programs cannot be overstated. Each year thousands of
people are diagnosed with leukemia or other blood diseases which may be
cured through a blood stem cell transplant may be a cure. Some will
find a matched donor, but many others will have to rely on the kindness
of strangers. For those of African-American, Asian, Pacific Islander,
Hispanic, Native American, Native Alaskan descent, this is especially
challenging.
I commend NMDP and other on their education and outreach initiatives
particularly those programs aimed at recruiting donors from minority
populations. In 1993, the NMDP Registry included 37,601 donors of
African-American, Asian, Pacific Islander, Hispanic, Native American,
Native Alaskan heritage. As of August 2003, the number is now 1,145,000
donors. This an increase of approximately 3,000 percent. But there is
still a critical need for donors from minority populations.
Her name was Justice Taitague, She was one of the 70 percent who
could not find a matched donor from among her family members. Sadly,
the donor registry at the time could not provide a match. Through the
efforts of Dr. Thomas Shieh, the Guam Medical Society, and the National
and Hawaiian Marrow Donor Programs, the first ever marrow drive on Guam
was held on her behalf. This ``Drive for Justice'' registered thirty-
four hundred volunteers in just three days. But it was too late for
Justice, who passed away a few days after the drive.
Justice will never know the impact her life, her story has had on
others. She has given us a gift--the gift of understanding of the
importance of the National Marrow Donor Program and other bone marrow
donor programs and she has given hope to others of Asian/Pacific Island
descent searching for a donor.
Mr. Speaker, I fully support House Concurrent Resolution 206
supporting the National Marrow Donor Program and other bone marrow
donor programs and encouraging Americans to learn about the importance
of bone marrow donation. For me and the people of Guam, it's a matter
of Justice.
Mr. WALDEN of Oregon. Mr. Speaker, I yield back the balance of my
time.
The SPEAKER pro tempore (Mr. Simmons). The question is on the motion
offered by the gentleman from Oregon (Mr. Walden) that the House
suspend the rules and agree to the concurrent resolution, H. Con. Res.
206.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of
those present have voted in the affirmative.
Mr. WALDEN of Oregon. Mr. Speaker, on that I demand the yeas and
nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the
Chair's prior announcement, further proceedings on this motion will be
postponed.
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