[Congressional Record Volume 149, Number 137 (Wednesday, October 1, 2003)]
[House]
[Pages H9051-H9054]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
NATIONAL BONE MARROW DONOR REGISTRY REAUTHORIZATION ACT
Mr. UPTON. Mr. Speaker, I move to suspend the rules and pass the bill
(H.R. 3034) to amend the Public Health Service Act to reauthorize the
National Bone Marrow Donor Registry, and for other purposes, as
amended.
The Clerk read as follows:
H.R. 3034
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 Donor
Registry Reauthorization Act''.
SEC. 2. NATIONAL BONE MARROW DONOR REGISTRY.
(a) National Registry.--Section 379 of the Public Health
Service Act (42 U.S.C. 274k) is amended--
(1) in subsection (a)--
(A) in paragraph (1), by striking ``except that'' and all
that follows and inserting ``except that--
``(A) 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; and
``(B) 1 additional consecutive 2-year term may be served by
any member of the board who has no employment, governance, or
financial affiliation with any donor center, recruitment
group, transplant center, or cord blood bank.''; and
(B) in paragraph (4)--
(i) by striking ``the Naval Medical Research and
Development Command'' and inserting ``the Department of
Defense Marrow Donor Recruitment and Research Program
operated by the Department of the Navy''; and
(ii) by striking ``Organ'' after ``Division of'';
(2) in subsection (b)--
(A) in paragraph (4), by inserting ``at least'' before
``annually'';
(B) in paragraph (7), by striking ``and comparisons of
transplant centers regarding search and other costs that
prior to transplantation are charged to patients by
transplant centers; and'';
(C) in paragraph (8), by inserting ``and outreach'' after
``and demonstration'';
(D) at the end of paragraph (8), by striking the period and
inserting a semicolon;
(E) by redesignating paragraphs (3) through (8) as
paragraphs (4) through (9);
(F) by inserting after paragraph (2), the following:
``(3) maintain and expand medical emergency contingency
response capabilities in concert with Federal programs for
response to threats of use of terrorist or military weapons
that can damage marrow, such as ionizing radiation or
chemical agents containing mustard, so that the capability of
supporting patients with marrow damage from disease can be
used to support casualties with marrow damage;''; and
(G) by adding at the end the following:
``(10) conduct and support research to improve the
availability, efficiency, safety, and cost of transplants
from unrelated donors and the effectiveness of Registry
operations;
``(11) increase the number of umbilical cord blood units
listed in the Registry and assist cord blood banks in the
Registry program in accordance with subsection (c); and
``(12) establish bylaws and procedures--
``(A) to prohibit any member of the board of directors of
the Registry who has an employment, governance, or financial
affiliation with a donor center, recruitment group,
transplant center, or cord blood bank from participating in
any decision that materially affects the center, recruitment
group, transplant center, or cord blood bank; and
``(B) to limit the number of members of the board with any
such affiliation.'';
[[Page H9052]]
(3) in subsection (c)--
(A) in clause (ii) of paragraph (2)(A), by striking ``,
including providing updates''; and
(B) in paragraph (3), by striking ``the availability, as a
potential treatment option, of receiving a transplant of bone
marrow from an unrelated donor'' and inserting ``transplants
from unrelated donors as a treatment option and resources for
identifying and evaluating other therapeutic alternatives'';
(4) in subsection (d)--
(A) in paragraph (2)(C), by inserting ``and assist with
information regarding third party payor matters'' after
``ongoing search for a donor'';
(B) in paragraph (2)(F)--
(i) by redesignating clause (v) as clause (vi); and
(ii) by inserting after clause (iv) the following:
``(v) Information concerning issues that patients may face
after a transplant regarding continuity of care and quality
of life.''; and
(C) in paragraph (3)(B), by striking ``Office may'' and
inserting ``Office shall'';
(5) in subsection (g), by striking ``the bone marrow donor
program of the Department of the Navy'' and inserting ``the
Department of Defense Marrow Donor Recruitment and Research
Program operated by the Department of the Navy'';
(6) in subsection (h)--
(A) by striking ``Application.--'' and inserting
``Contracts.--'';
(B) by striking ``To be eligible'' and inserting the
following:
``(1) Application.--To be eligible''; and
(C) by adding at the end the following:
``(2) Considerations.--In awarding contracts under this
section, the Secretary shall give substantial weight to the
continued safety of donors and patients and other factors
deemed appropriate by the Secretary.'';
(7) in subsection (i), by striking ``include'' and
inserting ``be''; and
(8) by striking subsection (l).
(b) Bone Marrow Scientific Registry.--Section 379A of the
Public Health Service Act (42 U.S.C. 274l) is amended--
(1) in subsection (a), by adding at the end the following:
``The scientific registry shall participate in medical
research that has the potential to improve transplant
outcomes.'';
(2) in subsection (c), by striking ``Each such report shall
in addition include the data required in section 379(l)
(relating to pretransplant costs).''; and
(3) by adding after subsection (c) the following:
``(d) Publicly Available Data.--The scientific registry
shall make relevant scientific information not containing
individually identifiable information available to the public
in the form of summaries and data sets to encourage medical
research and to provide information to transplant programs,
physicians, and patients.''.
(c) Bone Marrow and Marrow Defined.--Part I of title III of
the Public Health Service Act (42 U.S.C. 274k et seq.) is
amended--
(1) by redesignating section 379B as section 379C; and
(2) by inserting after section 379A the following:
``SEC. 379B. BONE MARROW AND MARROW DEFINED.
``For purposes of this part, the terms `bone marrow' and
`marrow' include bone marrow and any other source of
hematopoietic progenitor cells the acquisition or use of
which is not inconsistent with Federal law.''.
(d) Authorization of Appropriations.--Section 379C of the
Public Health Service Act, as redesignated by subsection (c),
is amended to read as follows:
``SEC. 379C. AUTHORIZATION OF APPROPRIATIONS.
``(a) In General.--For the purpose of carrying out this
part, there are authorized to be appropriated $32,000,000 for
fiscal year 2004, and such sums as may be necessary for each
of the fiscal years 2005 through 2008.
``(b) Emergency Contingency Response Capabilities.--In
addition to the amounts authorized to be appropriated under
subsection (a), there are authorized to be appropriated such
sums as may be necessary for the maintenance and expansion of
emergency contingency response capabilities under section
379(b)(3).''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Michigan (Mr. Upton) and the gentleman from Ohio (Mr. Brown) each will
control 20 minutes.
The Chair recognizes the gentleman from Michigan (Mr. Upton).
General Leave
Mr. UPTON. Mr. Speaker, I ask unanimous consent that all Members may
have 5 legislative days within which to revise and extend their remarks
on this legislation and to insert extraneous material on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Michigan?
There was no objection.
Mr. UPTON. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I am pleased that the House is considering today H.R.
3034, the National Bone Marrow Donor Registry Reauthorization Act to
extend Federal support for a national bone marrow registry for an
additional 5 years.
Bone marrow transplants are often one of the last options available
to patients struggling to fight debilitating and often terminal
diseases. Sadly, finding a bone marrow match is most 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
must rely on the help of strangers. The National Bone Marrow Donor
Registry facilitates marrow and cord blood transplants for patients
with life-threatening diseases who do not have matching donors in their
families.
In addition to the 5-year reauthorization period, H.R. 3034 amends
the functions of the National Bone Marrow Donor Registry to reflect new
directions that the National Bone Marrow Donor Registry is undertaking
to improve its capabilities. Notably, the legislation directs the
registry to maintain and expand medical response capabilities, in
concert with Federal programs, for responding to terrorist threats that
can damage marrow. The registry is also directed to increase the number
of umbilical cord blood units listed in the registry and assist cord
blood banks in the registry program. This is of special importance to
many minority populations who are less likely to find a bone marrow
match.
H.R. 3034 also includes provisions to improve data collection and
facilitate information sharing with physicians, other health care
professionals and the public regarding transplants from unrelated
donors.
Each month, the National Bone Marrow Donor Registry coordinates more
than 150 transplants. With a diverse registry of more than 4 million
potential volunteer bone marrow and cord blood donors, the National
Bone Marrow Donor Registry offers hope to thousands and thousands of
patients. It is important that we reauthorize this successful program.
Mr. Speaker, I urge my colleagues to support this piece of
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.
The National Bone Marrow Donor Registry Reauthorization Act offers
significant improvements to a very successful public health initiative.
I commend the gentleman from Florida (Mr. Bilirakis) and the gentleman
from New York (Mr. Towns), the gentleman from Georgia (Mr. Lewis) and
my colleagues in the Congressional Black Caucus for taking lead roles
in advancing this legislation.
Tragically, Americans in need of lifesaving bone marrow transplants
often face daunting odds. In fact, the chance of finding a compatible
unrelated donor is only about one in 20,000. As the largest and most
diverse list of potential donors, the registry is America's best chance
to improve those odds. With a database of roughly 4 million potential
donors, it offers hope to the thousands of Americans diagnosed every
year with blood, metabolism or immune system disorders.
The registry has facilitated over 14,000 transplants since 1987, but
there is much work that needs to be done. The legislation before us
today permits that work to continue and expand with enhanced efforts to
educate the general public about the registry, as well as significant
outreach to minority populations. The bill also creates important new
authority to apply the knowledge gained in treating marrow diseases to
the task of preparing the Nation for radiological and chemical attacks.
I would be remiss if I did not also thank the gentleman from Florida
(Mr. Young), who has done remarkable work on this issue for as long as
I have been in Congress. I thank him for his participation and urge my
colleagues to support this legislation.
Mr. Speaker, I reserve the balance of my time.
Mr. UPTON. Mr. Speaker, I yield myself 1 minute.
Mr. Speaker, I would just like to say that the gentleman from Florida
(Mr. Young) not only has a great legacy in this House for so many
different issues, particularly as chairman of the Committee on
Appropriations, but one of the issues that bonded our friendship early
on was his direction and sponsorship of this issue.
I would like to say that when I was, I think, a freshman or a
sophomore Member in this House, because of the battle he helped lead, I
joined with so many other Members of this body to actually register
myself with the National Bone Marrow Donor Registry. I
[[Page H9053]]
hope someday that I will be called. Thus far, I have not, but I am one
of those that has voluntarily registered. I would love the afternoon
that I might get a phone call to say, ``Come on down; I want to draw a
sample.''
Mr. Speaker, I yield 3 minutes to the gentleman from Florida (Mr.
Young).
Mr. YOUNG of Florida. Mr. Speaker, I thank the gentleman very much
for yielding me the time, and I appreciate his management of this bill
and also the gentleman from Ohio (Mr. Brown).
This is an important piece of legislation. We actually got this
program started without an authorization bill by working it through an
appropriations bill back in 1985. It has been an ongoing program and an
ongoing commitment of mine for a long time.
I appreciate also the gentleman from Louisiana (Mr. Tauzin), the
chairman of the committee, and the gentleman from Florida (Mr.
Bilirakis), the chairman of the subcommittee, for moving this bill and
working with us to make sure that it meets all of the new, modern
requirements of the bone marrow program.
I will be very brief, Mr. Speaker, and say that back in the 1980s
when we determined that it was necessary to have a program of this
type, those in our government who dealt with health issues said, It
can't be done. They said, You'll never get maybe 20-, 30-, 40,000
people willing to be a bone marrow donor and that wouldn't work because
the chances of finding a donor are about one in 20,000 of finding a
donor that will actually match the patient. It is critical that the
bone marrow of the patient and the donor match.
And so I am happy to report that although they said it could not be
done, we have 5 million people in the registry today, and we are
exchanging bone marrow and patients across the oceans with 14 other
countries that have patterned bone marrow programs like ours to join
with us.
It is a very successful program. We are learning more about it every
day. We are saving lives every day. As the gentleman from Michigan
said, this is the last resort. You do not go to a bone marrow
transplant unless your disease is terminal. This procedure can be used
in 60 or more types of blood diseases.
There are thousands and thousands of heroes out there who have
actually made donations of their bone marrow to help save a life. It is
a life-changing experience to become a bone marrow donor and know that
you personally have saved the life of a young child or even an adult,
and you have at least given them a second chance for life.
I would like to include in my remarks some of the early heroes like
Admiral Zumwalt, who was one of the real soldiers in this battle to
make this happen.
Again, I just thank the Congress for the tremendous support that we
have had all the way through as we create this program, as we
appropriate the money to keep it funded.
Mr. Speaker, I rise in strong support of H.R. 3034, legislation I
have introduced to reauthorize the National Bone Marrow Donor Registry.
At the outset, let me thank the Chairman of the Energy and Commerce
Committee, my colleague from Louisiana Mr. Tauzin, and the Chairman of
the Subcommittee on Health, my colleague and neighbor from Florida Mr.
Bilirakis, for helping expedite the consideration of this legislation.
I have worked closely with them and with their staffs throughout the
drafting of H.R. 3034 to ensure its timely and smooth passage through
both the House and Senate.
Mr. Speaker, the National Marrow Donor Program is a true modern
medical miracle that save 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 more than 16,000 who have been called upon to donate bone 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.
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.
Through the National Marrow Donor Program, we have also 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 14 other international registries.
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
then to save a life, and with the ongoing support of every member of
this House we can adopt this legislation today to continue to work of
this program for the next 5 years.
There are 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 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 and marrow 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
procedure.
Finally, there are the true heroes of the program, the patients and
donors. Every patient that has sought a marrow transplant has helped
the doctors and researchers perfect the marrow transplant procedure to
improve the outcome for every future patient. And every donor who has
rolled up his or her sleeve to sign up for the national registry and
ultimately give a bit of their bone marrow 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 Chairmen Tauzin and
Bilirakis for their ongoing support and for the support of the members
of the Energy and Commerce Committee in moving this legislation so
quickly. Finally, 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.
Mr. TOWNS. Mr. Speaker, The National Bone Marrow Donor Registry,
operated by the National Marrow Donor Program (NMDP), is a precious
national resource that we must continue to support. I was happy to join
my colleagues, Chairman Bill Young and Chairman Mike Bilirakis, in
introducing H.R. 3034, ``The National Bond Marrow Registry
Reauthorization Act.'' In particular, I am extremely pleased that we
are considering this bill in an expeditious manner to ensure that there
is no gap in the continuation of this important program. I am also
pleased that my colleagues, Mr. Ford of Tennessee and Mr. Lewis of
Georgia have indicated their endorsement for this legislation.
Since its inception, the NMDP has worked tirelessly to build a
Registry that helps Americans in need. I applaud the donors who are
true American heroes. They are willing to help individuals who they do
not even know by taking the time to donate their marrow, blood, or cord
blood. We can all hope to emulate their generosity and selflessness.
We honor these men and women, of all races and ethnicities, by
reauthorizing the Registry. Since 1986, there have been many scientific
advances in the area of bone marrow transplants. The NMDP continues to
work diligently to improve the odds of every American being able to
find a match through the Registry. Its efforts have led to an increase
of the number of minority donors who participate in the Registry, as
well as the number of minorities who have access to these life-saving
transplants.
Today, I call on my colleagues to continue their support of the NMDP
and its important
[[Page H9054]]
mission. We should approve H.R. 3034 today so that we can ensure a
timely reauthorization of the Bone Marrow Registry.
Ms. McCARTHY of Missouri. Mr. Speaker, I rise today in support of
H.R. 3034, the National Bone Marrow Donor Registry Reauthorization Act.
I want to commend the work of the co-sponsors of this legislation,
the Representative of Florida, and Representative of New York. Your
leadership on this issue has been remarkable and I commend your
efforts.
It is a tragedy for Americans in need of bone marrow or stem cell
donation to remain unconnected with willing donors. The National Bone
Marrow Donor Registry has helped connect thousands of Americans in need
of assistance with donors across the country. The additional resources
this bill authorizes will help us expand this network and save even
more lives.
I want to particularly commend the Registry's effort to recruit
minority donors for their database. Blood diseases extract an
especially heavy toll on minority populations, and improving the
diversity of the donor pool should be an important part of our response
to this problem.
Mr. Speaker, I want to commend the efforts of St. Luke's Hospital in
Kansas City. Their Kansas City Blood and Marrow transplant program
recruits new donors, finds matches, and coordinates the donation
process. Since its inception in 1996, the Transplant Center at St.
Lukes has performed over 450 transplants and connected thousands in our
region with needed care. As a result of their hard work, the Center has
been named a member of the United Resource Network centers of
excellence program. These courageous efforts save thousands of lives
each year. I congratulate them for being a model to our Nation.
Mr. Speaker, this bipartisan legislation is vital. I urge my
colleagues to join me today in support of H.R. 3034.
Mr. TOM DAVIS of Virginia. Mr. Speaker, I rise today in strong
support of H.R. 3034, the National Bone Marrow Donor Registry
Reauthorization Act.
Today we are able to prolong hope for so many individuals waiting for
a match to their bone marrow by reauthorizing the National Bone Marrow
Donor Registry for another five years. For many people waiting for a
transplant due to various illnesses, the task of finding a donor is a
long and costly process. Each year two-thirds of patients awaiting bone
marrow transplants are unsuccessful in finding a match within their
family. This is why the establishment of a national registry was
crucial.
About seventy percent of leukemia and other blood disorder patients
do not find a match within their family. A match would be someone with
certain white blood cells, called antigens, which are similar or
identical to the patient's. These transplants enable patients the
opportunity to live a full life, whereas without the transplant they
would have little or no chance of survival.
From the organization of a donor registry through the United States
Navy in 1986 to this current extension of the National Registry, it is
clear that Congress takes this issue to heart. Each member of this
House has someone in their district who has been touched by one of the
debilitating diseases that need a bone marrow transplant, often as a
last option.
Mr. Speaker, in closing, I would like to thank Chairman Young for his
leadership on the National Bone Marrow Donor Registry Reauthorization
Act. Because of his family's own experience with the seriousness of
bone marrow transplants, he has emerged as a leader in the issue and is
committed to the cause. I urge all my colleagues to support this
important reauthorization.
Ms. BORDALLO. Mr. Speaker, I rise today in support of H.R. 3034 which
reauthorizes the National Bone Marrow Donor Registry. I commend
Chairman Young for his leadership in this critical program. Through his
efforts in establishing the National Bone Marrow Donor Registry he has
given countless people another chance at life.
Through the recruitment of the National Marrow Donor Program (NMDP),
which manages the Registry, patients there are over 5 million potential
donors. Through NMDP outreach efforts in 19 countries, patients have
access to an additional 2.5 million potential donors. In fact,
approximately 40 percent of transplants facilitated by NMDP involves a
U.S. patient receiving stem cells from an international donor or an
international donor receiving stems cells from a U.S. donor.
The importance of the Registry cannot be overstated and I commend and
fully support the efforts of the National Marrow Donor Program for
their recruitment efforts, especially for their efforts to recruit
potential donors from diverse racial or ethnic groups.
The critical need for donors of African-American, Asian/Pacific
Islander, Hispanic, American Indian/Alaska Native descent was made
clear to me by the story of a five-year-old little girl from Guam whose
life was cut short by leukemia.
Her name was Justice Taitague. Her best chance for life was a marrow
transplant from a member of her ethnic group. The donor list at the
time could not provide a match, but everyone involved in her care would
not give up. 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.
Tragically, she passed away less than a week after the drive. But her
life has given hope to others of Asian/Pacific Island descent needing a
stem-cell transplant and helped us to understand the importance of the
National Marrow Donor Program.
Mr. Speaker, I fully support H.R. 3034 to reauthorize the National
Marrow Donor Registry. There is still a critical need for donors from
the Asian, Pacific Islander and other minority communities to give the
gift of life. Join the Registry.
Mr. BROWN of Ohio. Mr. Speaker, I yield back the balance of my time.
Mr. UPTON. Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Michigan (Mr. Upton) that the House suspend the rules
and pass the bill, H.R. 3034, 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.
____________________