National Bone Marrow Donor Registry Reauthorization Act

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

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.

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. 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

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. Speaker, I have no further requests for time, and I yield back the balance of my time.

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.

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.

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. 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

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. Speaker, I yield back the balance of my time.

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.

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.