[Congressional Record Volume 144, Number 65 (Wednesday, May 20, 1998)]
[Extensions of Remarks]
[Pages E914-E915]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


       NATIONAL BONE MARROW REGISTRY REAUTHORIZATION ACT OF 1998

                                 ______
                                 

                          HON. C.W. BILL YOUNG

                               of Florida

                    in the house of representatives

                        Wednesday, May 20, 1998

  Mr. YOUNG. of Florida. Mr. Speaker, I submit for the record, this 
statement which should have followed my remarks in the House yesterday 
during Consideration of H.R. 2202, to Reauthorize the National Bone 
Marrow Donor Registry. Mr. Speaker, I rise in support of this measure 
and thank the Chairman of the Commerce Committee, Mr. Bliley, and the 
Health Subcommittee Chairman, Mr. Bilirakis, for their efforts to help 
bring this legislation reauthorizing the lifesaving work of the 
National Marrow Donor Program to the floor for consideration.
  H.R. 2202 will guide the National Marrow Donor Program into the next 
century by reauthorizing the program's core function of maintaining a 
bone marrow donor registry, strengthening efforts to increase minority 
recruitment, and improving patient and donor advocacy.
  Mr. Speaker, with 218 cosponsors this bill enjoys the broad 
bipartisan support of our colleagues, as well as the support of the 
National Marrow Donor Program, the American Red Cross, the American 
Association of Blood Banks, the National Heart Lung and Blood 
Institute, and the Department of Health and Human Services.
  The National Bone Marrow Donor Registry is an outstanding program 
that was created by the Congress to give hope to families where none 
would have otherwise existed. Since its establishment a little more 
than 10 years ago, this program has given life to thousands of people 
here and around the world.
  It was on April 2, 1987 that I first testified before the House 
Commerce Committee on this issue. That was very early in my search for 
a home for a national bone marrow registry. In fact, that was very 
early in my education on the many issues that surrounded bone marrow 
transplantation. What I knew at the time, though, was that without a 
national registry, men, women, and children with leukemia and other 
fatal blood disorders would continue to die because there was no way to 
find unrelated marrow donors for them.
  What I remember from that hearing 11 years ago was that there was 
nowhere within the Department of Health and Human Services to call home 
for a national registry. In fact, the Director of the National 
Institutes of Health testified after me that day saying there was no 
way that a national registry of unrelated volunteer donors would ever 
succeed. He told the Committee we would never find more than 50,000 
people willing to take the simple blood test required to enter such a 
registry.
  Mr. Speaker, while I already felt personally challenged to do 
something about creating a national registry, those remarks that day 
gave me the final incentive I needed to do all within my power to make 
this program a success.
  A little over six months after that hearing, with a small 
appropriation I requested for the United States Navy, we activated 
National Marrow Donor Program. And on my birthday, December 16, 1987, 
an airplane took off from a snowy airfield in Milwaukee to deliver the 
first bone marrow to a dying child from North Carolina.
  Today, Mr. Speaker, I proudly report to you that we proved those 
skeptics wrong. We now have a national registry of 3,134,601 people 
willing to donate their bone marrow to save a life. In addition, our 
national registry is linked with 14 other similar registries around the 
world to allow us to ship bone marrow across the oceans to save lives.
  There are so many heroes that have made this program such a success 
that my time today does not allow me to name them all. There are my 
colleagues in the House and Senate who were willing to take a chance 
and support this program when the so-called experts said it couldn't be 
done. A number of our colleagues have been personally touched by the 
success of this program when they were called to donate bone marrow or 
when one or family members received the tragic news that they would die 
without a bone marrow transplantation.
  There are many other heroes, some such as Admiral Bud Zumwalt. It was 
Admiral Zumwalt that I bumped into in the early months of 1987 when he 
was working the halls of Congress searching for the same thing as I 
was, a home for this national registry. Together we joined as a team 
with Dr. Bob Graves, a cattle rancher from Colorado, Dr. John Hansen, a 
rising young physician and researcher from Seattle, and Captain Bob 
Hartzman, a Navy doctor from Bethesda. Together we found a willing 
partner in the United States Navy whose Surgeon General said he would 
give us a federal home for this great national program.
  Then Mr. Speaker, there are the countless heroes around our nation 
who are the volunteers willing to be a part of the national registry 
and the patients who have undergone bone marrow transplants and have 
helped us learn and improve the process with each and every procedure. 
There are the families who have given us the support and the energy to 
push ahead. And there are those who have sponsored the thousands upon 
thousands of recruiting drives all around our nation to help us build 
such a large and diverse registry.

  The result of our work is a program that saves lives every day by 
matching patients and donors. Few federal programs have been as 
successful in such a short period of time and it is the involvement of 
the federal government that has been the key to this success. Prior to 
our establishment of a national registry, there was only a piecemeal 
network of independent local registries of all sizes, with very little 
intercommunication. With the support of Congress, we activated a 
national registry in September 1987 that now links together more than 
98 donor centers, through which donors are recruited and entered into 
the registry, and 112 transplant centers, which work with the patients 
to complete the transplants. From a small, fragmented system of 
individual donor centers was born a true national and international 
treasure that is the National Marrow Donor Program and links the United 
States with eight foreign donor centers, 23 foreign transplant centers, 
and 14 national registries in foreign nations.
  With the support of Congress, the United States Navy, and the 
Department of Health and Human Services, we have come a long way these 
past 11 years, but there is still a ways to go. With the number of bone 
marrow transplants using unrelated donors still increasing dramatically 
from year to year, it is obvious that we must continue to grow the size 
of the registry to save lives and give the largest number of children 
and adults the best possible opportunity to find a matched donor. While 
the likelihood of a patient identifying a fully matched unrelated donor 
has increased dramatically from 30 percent in 1989, to nearly 80 
percent today, our continued commitment can help bring that figure 
closer and closer to 100 percent.
  Much of the federal support we provide each year is for donor 
recruitment and education activities. With this federal support, we are 
maintaining the registry's remarkable rate of growth. Last year the 
donor rolls increased 17 percent by a total of more than 450,000.
  Still, despite all of our good work, we have a ways to go to ensure 
that all ethnic groups have the best possible chance of finding a 
matched donor. The federal resources we began earmarking for minority 
recruitment beginning in 1991 have made a tremendous difference in the 
rate at which we have been able to increase minority participation in 
the program. In fact, the number of minority donors in the national 
registry have increased by 140 percent in the past four years, a rate 
far greater than the growth of the overall registry. As a result, there 
has been a corresponding 140 percent increase in the number of minority 
patients receiving life-saving transplants over the past four years. 
More minority patients received transplants last year then in the 
program's first seven years combined.
  Mr. Speaker, as I have said time and time again, the key to the 
success of the National Marrow Donor Program is people--people who are 
willing to save a life by donating a small amount of their bone marrow. 
Unfortunately, people alone have not made this program the success that 
it is today. Without the federal support Congress has provided the 
National Marrow Donor Program over the past 11 years, we would still 
have a fragmented network of donor centers each sponsoring bake sales 
and other fund raising drives to pay for the testing of donors. Without 
federal support, it would be virtually impossible to maintain, let 
alone continue to increase the donor rolls of the national registry. 
With an attrition rate of just 5 percent, the national program will 
have to recruit more than 150,000 donors per year just to maintain the 
current size of the national registry.
  Suffering the greatest from any reduction in our federal support for 
this program, would be the minority groups that we are working so hard 
to recruit and continue to be underrepresented in the national 
registry.
  Our efforts here and now must build on our success, taking what we 
have learned since the program's establishment and applying this to 
improve our future. Likewise, we must recognize that we have learned of 
ways in which the program could do a better job. This is the goal of 
H.R. 2202.
  The program's success is grounded in the more than 3 million donors 
who have volunteered to donate their bone marrow, in the coordinated 
system of donor, transplant and recruiting centers that has grown 
around the registry, and in the increased awareness of bone marrow 
transplantation. My legislation

[[Page E915]]

will continue this by supporting further recruitment, coordination and 
educational activities.
  However, if there is one thing we can agree on above all else, it is 
the fact that without continuing to increase the numbers of minority 
donors on the Registry, patients of these groups will continue to face 
a greater difficulty in finding a matched unrelated donor. For this 
reason, H.R. 2202 places a special emphasis on the need to increase 
potential donors of racial and ethnic minority heritage and makes this 
the priority of the program's recruitment efforts.

  We have also learned a lot about the needs of patients and their 
families as they face the challenge of finding an unrelated donor match 
for their loved one. H.R. 2202 formally establishes an Office of 
Patient Advocacy and Case Management within the program to provide 
individualized services for patients requesting assistance. The office 
will provide information and coordinate all aspects of the search and 
transplantation process to ensure the needs of the patient are being 
met. While much of this work is already being done by an office within 
the program, H.R. 2202 builds on these efforts by codifying the office 
and granting it additional authority recommended by the Senate in 
legislation approved by that body in 1996.
  My wife Beverly and I have met with and befriended hundreds of 
donors, patients, and their families from all over our nation. To each 
of these patients, I promise that I will continue to do all that I can 
to ensure that they have the best possible chance to find a donor. 
Unfortunately, some of these families never found a donor before it was 
too late. Many others, however, found their miracle match and they are 
alive and doing well today because of the living medical miracle that 
is this national registry.
  There is nothing I have done in public service that I am more proud 
of than establishing the National Marrow Donor Program. Every member of 
Congress should share that pride as they are a part of a great federal 
program that works. The measure of this program's value is the lives it 
saves throughout our nation and throughout our world. As we continue to 
increase the number of life-saving transplants that take place each 
year, we know that our work is not yet finished and that there are more 
lives to save. In making tough budgetary decisions, Congress must 
measure the value of each and every program to the American taxpayer. 
With that as our test, their can be no disputing the success of the 
National Marrow Donor Program because there is no higher priority then 
giving someone back their life.
  Mr. Speaker, I appreciate the Congress' strong support for this 
program and for my legislation that will enable us to continue on with 
our life-saving work for the next five years. That commitment to this 
program is evident from the special joint House-Senate hearing recently 
held and by the willingness to work together, House and Senate, to 
expedite the passage and enactment of H.R. 2202. On behalf of all those 
donors and patients still awaiting their opportunity to unite in the 
most special of ways, I say thank you to all my colleagues. And on 
behalf of those families who will experience the second chance to enjoy 
their life with a child, with a husband or wife, or with a brother or 
sister, I say thank you for being one of the countless heroes 
throughout the short history of this program. Together, day after day, 
we will continue to give the most precious gift of all, here and 
abroad, the living gift of life.

                          ____________________