[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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