[Congressional Record Volume 144, Number 64 (Tuesday, May 19, 1998)]
[House]
[Pages H3425-H3429]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       NATIONAL BONE MARROW REGISTRY REAUTHORIZATION ACT OF 1998

  Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the 
bill (H.R. 2202) to amend the Public Health Service Act to revise and 
extend the bone marrow donor program, and for other purposes, as 
amended.
  The Clerk read as follows:

                               H.R. 2202

       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 
     Registry Reauthorization Act of 1998''.

     SEC. 2. REAUTHORIZATION.

       (a) Establishment of Registry.--Section 379(a) of the 
     Public Health Service Act (42 U.S.C. 274k(a)) is amended--
       (1) by striking ``(referred to in this part as the 
     `Registry') that meets'' and inserting ``(referred to in this 
     part as the `Registry') that has the purpose of increasing 
     the number of transplants for recipients suitably matched to 
     biologically unrelated donors of bone marrow, and that 
     meets'';
       (2) by striking ``under the direction of a board of 
     directors that shall include representatives of'' and all 
     that follows and inserting the following: ``under the 
     direction of a board of directors meeting the following 
     requirements:
       ``(1) Each member of the board shall serve for a term of 
     two years, and each such member may serve as many as three 
     consecutive two-year terms, except that 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.
       ``(2) A member of the board may continue to serve after the 
     expiration of the term of such member until a successor is 
     appointed.
       ``(3) In order to ensure the continuity of the board, the 
     board shall be appointed so that each year the terms of 
     approximately \1/3\ of the members of the board expire.
       ``(4) The membership of the board shall include 
     representatives of marrow donor centers and marrow transplant 
     centers; recipients of a bone marrow transplant; persons who 
     require or have required such a transplant; family members of 
     such a recipient or family members of a patient who has 
     requested the assistance of the Registry in searching for an 
     unrelated donor of bone marrow; persons with expertise in the 
     social sciences; and members of the general public; and in 
     addition nonvoting representatives from the Naval Medical 
     Research and Development Command and from the Division of 
     Organ Transplantation of the Health Resources and Services 
     Administration.''.
       (b) Program for Unrelated Marrow Transplants.--
       (1) In general.--Section 379(b) of the Public Health 
     Service Act (42 U.S.C. 274k(b)) is amended by redesignating 
     paragraph (7) as paragraph (8), and by striking paragraphs 
     (2) through (6) and inserting the following:
       ``(2) carry out a program for the recruitment of bone 
     marrow donors in accordance with subsection (c), including 
     with respect to increasing the representation of racial and 
     ethnic minority groups (including persons of mixed ancestry) 
     in the enrollment of the Registry;
       ``(3) carry out informational and educational activities in 
     accordance with subsection (c);
       ``(4) annually update information to account for changes in 
     the status of individuals as potential donors of bone marrow;
       ``(5) provide for a system of patient advocacy through the 
     office established under subsection (d);
       ``(6) provide case management services for any potential 
     donor of bone marrow to whom the Registry has provided a 
     notice that the potential donor may be suitably matched to a 
     particular patient (which services shall be provided through 
     a mechanism other than the system of patient advocacy under 
     subsection (d)), and conduct surveys of donors and potential 
     donors to determine the extent of satisfaction with such 
     services and to identify ways in which the services can be 
     improved;
       ``(7) with respect to searches for unrelated donors of bone 
     marrow that are conducted through the system under paragraph 
     (1), collect and analyze and publish data on the number and 
     percentage of patients at each of the various stages of the 
     search process, including data regarding the furthest stage 
     reached; the number and percentage of patients who are unable 
     to complete the search process, and the reasons underlying 
     such circumstances; and comparisons of transplant centers 
     regarding search and other costs that prior to 
     transplantation are charged to patients by transplant 
     centers; and''.
       (2) Report of inspector general; plan regarding 
     relationship between registry and donor centers.--The 
     Secretary of Health and Human Services shall ensure that, not 
     later than one year after the date of the enactment of this 
     Act, the National Bone Marrow Donor Registry (under section 
     379 of the Public Health Service Act) develops, evaluates, 
     and implements a plan to effectuate efficiencies in the 
     relationship between such Registry and donor centers. The 
     plan shall incorporate, to the extent practicable, the 
     findings and recommendations made

[[Page H3426]]

     in the inspection conducted by the Office of the Inspector 
     General (Department of Health and Human Services) as of 
     January 1997 and known as the Bone Marrow Program Inspection.
       (c) Program for Information and Education.--Section 379 of 
     the Public Health Service Act (42 U.S.C. 274k) is amended by 
     striking subsection (j), by redesignating subsections (c) 
     through (i) as subsections (e) through (k), respectively, and 
     by inserting after subsection (b) the following subsection:
       ``(c) Recruitment; Priorities; Information and Education.--
       ``(1) Recruitment; priorities.--The Registry shall carry 
     out a program for the recruitment of bone marrow donors. Such 
     program shall identify populations that are underrepresented 
     among potential donors enrolled with the Registry. In the 
     case of populations that are identified under the preceding 
     sentence:
       ``(A) The Registry shall give priority to carrying out 
     activities under this part to increase representation for 
     such populations in order to enable a member of such a 
     population, to the extent practicable, to have a probability 
     of finding a suitable unrelated donor that is comparable to 
     the probability that an individual who is not a member of an 
     underrepresented population would have.
       ``(B) The Registry shall consider racial and ethnic 
     minority groups (including persons of mixed ancestry) to be 
     populations that have been identified for purposes of this 
     paragraph, and shall carry out subparagraph (A) with respect 
     to such populations.
       ``(2) Information and education regarding recruitment; 
     testing and enrollment.--
       ``(A) In general.--In carrying out the program under 
     paragraph (1), the Registry shall carry out informational and 
     educational activities for purposes of recruiting individuals 
     to serve as donors of bone marrow, and shall test and enroll 
     with the Registry potential donors. Such information and 
     educational activities shall include the following:
       ``(i) Making information available to the general public, 
     including information describing the needs of patients with 
     respect to donors of bone marrow.
       ``(ii) Educating and providing information to individuals 
     who are willing to serve as potential donors, including 
     providing updates.
       ``(iii) Training individuals in requesting individuals to 
     serve as potential donors.
       ``(B) Priorities.--In carrying out informational and 
     educational activities under subparagraph (A), the Registry 
     shall give priority to recruiting individuals to serve as 
     donors of bone marrow for populations that are identified 
     under paragraph (1).
       ``(3) Transplantation as treatment option.--In addition to 
     activities regarding recruitment, the program under paragraph 
     (1) shall provide information to physicians, other health 
     care professionals, and the public regarding the 
     availability, as a potential treatment option, of receiving a 
     transplant of bone marrow from an unrelated donor.''.
       (d) Patient Advocacy and Case Management.--Section 379 of 
     the Public Health Service Act (42 U.S.C. 274k), as amended by 
     subsection (c) of this section, is amended by inserting after 
     subsection (c) the following subsection:
       ``(d) Patient Advocacy; Case Management.--
       ``(1) In general.--The Registry shall establish and 
     maintain an office of patient advocacy (in this subsection 
     referred to as the `Office').
       ``(2) General functions.--The Office shall meet the 
     following requirements:
       ``(A) The Office shall be headed by a director.
       ``(B) The Office shall operate a system for patient 
     advocacy, which shall be separate from mechanisms for donor 
     advocacy, and which shall serve patients for whom the 
     Registry is conducting, or has been requested to conduct, a 
     search for an unrelated donor of bone marrow.
       ``(C) In the case of such a patient, the Office shall serve 
     as an advocate for the patient by directly providing to the 
     patient (or family members, physicians, or other individuals 
     acting on behalf of the patient) individualized services with 
     respect to efficiently utilizing the system under subsection 
     (b)(1) to conduct an ongoing search for a donor.
       ``(D) In carrying out subparagraph (C), the Office shall 
     monitor the system under subsection (b)(1) to determine 
     whether the search needs of the patient involved are being 
     met, including with respect to the following:
       ``(i) Periodically providing to the patient (or an 
     individual acting on behalf of the patient) information 
     regarding donors who are suitability matched to the patient, 
     and other information regarding the progress being made in 
     the search.
       ``(ii) Informing the patient (or such other individual) if 
     the search has been interrupted or discontinued.
       ``(iii) Identifying and resolving problems in the search, 
     to the extent practicable.
       ``(E) In carrying out subparagraph (C), the Office shall 
     monitor the system under subsection (b)(1) to determine 
     whether the Registry, donor centers, transplant centers, and 
     other entities participating in the Registry program are 
     complying with standards issued under subsection (e)(4) for 
     the system for patient advocacy under this subsection.
       ``(F) The Office shall ensure that the following data are 
     made available to patients:
       ``(i) The resources available through the Registry.
       ``(ii) A comparison of transplant centers regarding search 
     and other costs that prior to transplantation are charged to 
     patients by transplant centers.
       ``(iii) A list of donor registries, transplant centers, and 
     other entities that meet the applicable standards, criteria, 
     and procedures under subsection (e).
       ``(iv) The posttransplant outcomes for individual 
     transplant centers.
       ``(v) Such other information as the Registry determines to 
     be appropriate.
       ``(G) The Office shall conduct surveys of patients (or 
     family members, physicians, or other individuals acting on 
     behalf of patients) to determine the extent of satisfaction 
     with the system for patient advocacy under this subsection, 
     and to identify ways in which the system can be improved.
       ``(3) Case management.--
       ``(A) In general.--In serving as an advocate for a patient 
     under paragraph (2), the Office shall provide individualized 
     case management services directly to the patient (or family 
     members, physicians, or other individuals acting on behalf of 
     the patient), including--
       ``(i) individualized case assessment; and
       ``(ii) the functions described in paragraph (2)(D) 
     (relating to progress in the search process).
       ``(B) Postsearch functions.--In addition to the case 
     management services described in paragraph (1) for patients, 
     the Office may, on behalf of patients who have completed the 
     search for an unrelated donor, provide information and 
     education on the process of receiving a transplant of bone 
     marrow, including the posttransplant process.''.
       (e) Criteria, Standards, and Procedures.--Section 379(e) of 
     the Public Health Service Act (42 U.S.C. 274k), as 
     redesignated by subsection (c) of this section, is amended by 
     striking paragraph (4) and inserting the following:
       ``(4) standards for the system for patient advocacy 
     operated under subsection (d), including standards requiring 
     the provision of appropriate information (at the start of the 
     search process and throughout the process) to patients and 
     their families and physicians;''.
       (f) Report.--Section 379 of the Public Health Service Act, 
     as amended by subsection (c) of this section, is amended by 
     adding at the end the following subsection:
       ``(l) Annual Report Regarding Pretransplant Costs.--The 
     Registry shall annually submit to the Secretary the data 
     collected under subsection (b)(7) on comparisons of 
     transplant centers regarding search and other costs that 
     prior to transplantation are charged to patients by 
     transplant centers. The data shall be submitted to the 
     Secretary through inclusion in the annual report required in 
     section 379A(c).''.
       (g) Conforming Amendments.--Section 379 of the Public 
     Health Service Act, as amended by subsection (c) of this 
     section, is amended--
       (1) in subsection (f), by striking ``subsection (c)'' and 
     inserting ``subsection (e)''; and
       (2) in subsection (k), by striking ``subsection (c)(5)(A)'' 
     and inserting ``subsection (e)(5)(A)'' and by striking 
     ``subsection (c)(5)(B)'' and inserting ``subsection 
     (e)(5)(B)''.

     SEC. 3. RECIPIENT REGISTRY.

       Part I of title III of the Public Health Service Act (42 
     U.S.C. 274k et seq.) is amended by striking section 379A and 
     inserting the following:

     ``SEC. 379A. BONE MARROW SCIENTIFIC REGISTRY.

       ``(a) Establishment of Recipient Registry.--The Secretary, 
     acting through the Registry under section 379 (in this 
     section referred to as the `Registry'), shall establish and 
     maintain a scientific registry of information relating to 
     patients who have been recipients of a transplant of bone 
     marrow from a biologically unrelated donor.
       ``(b) Information.--The scientific registry under 
     subsection (a) shall include information with respect to 
     patients described in subsection (a), transplant procedures, 
     and such other information as the Secretary determines to be 
     appropriate to conduct an ongoing evaluation of the 
     scientific and clinical status of transplantation involving 
     recipients of bone marrow from biologically unrelated donors.
       ``(c) Annual Report on Patient Outcomes.--The Registry 
     shall annually submit to the Secretary a report concerning 
     patient outcomes with respect to each transplant center. Each 
     such report shall use data collected and maintained by the 
     scientific registry under subsection (a). Each such report 
     shall in addition include the data required in section 379(l) 
     (relating to pretransplant costs).''.

     SEC. 4. AUTHORIZATION OF APPROPRIATIONS.

       Title III of the Public Health Service Act (42 U.S.C. 241 
     et seq.) is amended--
       (1) by transferring section 378 from the current placement 
     of the section and inserting the section after section 377; 
     and
       (2) in part I, by inserting after section 379A the 
     following section:

     ``SEC. 379B. AUTHORIZATION OF APPROPRIATIONS.

       ``For the purpose of carrying out this part, there are 
     authorized to be appropriated $18,000,000 for fiscal year 
     1999, and such sums as may be necessary for each of the 
     fiscal years 2000 through 2003.''.

     SEC. 5. STUDY BY GENERAL ACCOUNTING OFFICE.

       (a) In General.--During the period indicated pursuant to 
     subsection (b), the Comptroller General of the United States 
     shall conduct a study of the National Bone Marrow Donor 
     Registry under section 379 of the Public Health Service Act 
     for purposes of making determinations of the following:
       (1) The extent to which, relative to the effective date of 
     this Act, such Registry has increased the representation of 
     racial and ethnic minority groups (including persons of mixed 
     ancestry) among potential donors of bone marrow who are 
     enrolled with the Registry, and whether the extent of 
     increase results in a level of representation that meets the 
     standard established in subsection (c)(1)(A) of such section 
     379 (as added by section 2(c) of this Act).
       (2) The extent to which patients in need of a transplant of 
     bone marrow from a biologically unrelated donor, and the 
     physicians of such patients, have been utilizing the Registry 
     in the search for such a donor.

[[Page H3427]]

       (3) The number of such patients for whom the Registry began 
     a preliminary search but for whom the full search process was 
     not completed, and the reasons underlying such circumstances.
       (4) The extent to which the plan required in section 
     2(b)(2) of this Act (relating to the relationship between the 
     Registry and donor centers) has been implemented.
       (5) The extent to which the Registry, donor centers, donor 
     registries, collection centers, transplant centers, and other 
     appropriate entities have been complying with the standards, 
     criteria, and procedures under subsection (e) of such section 
     379 (as redesignated by section 2(c) of this Act).
       (b) Report.--A report describing the findings of the study 
     under subsection (a) shall be submitted to the Congress not 
     later than October 1, 2001. The report may not be submitted 
     before January 1, 2001.

     SEC. 6. COMPLIANCE WITH NEW REQUIREMENTS FOR OFFICE OF 
                   PATIENT ADVOCACY.

       With respect to requirements for the office of patient 
     advocacy under section 379(d) of the Public Health Service 
     Act, the Secretary of Health and Human Services shall ensure 
     that, not later than 180 days after the effective date of 
     this Act, such office is in compliance with all requirements 
     (established pursuant to the amendment made by section 2(d)) 
     that are additional to the requirements that under section 
     379 of such Act were in effect with respect to patient 
     advocacy on the day before the date of the enactment of this 
     Act.

     SEC. 7. EFFECTIVE DATE.

       This Act takes effect October 1, 1998, or upon the date of 
     the enactment of this Act, whichever occurs later.
  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Brown) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Florida (Mr. Bilirakis).


                             General Leave

  Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days within which to revise and extend their 
remarks on H.R. 2202 and to insert extraneous material on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Florida?
  There was no objection.
  (Mr. BILIRAKIS asked and was given permission to revise and extend 
his remarks.)
  Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may 
consume.
  Mr. Speaker, I am delighted this afternoon, truly delighted, to ask 
my colleagues in the House to support H.R. 2202, the National Bone 
Marrow Registry Reauthorization Act of 1998. I would acknowledge the 
hard work of Mr. Marc Wheat of the Majority staff, Mr. John Ford of the 
Minority staff, and other staffers from Mr. Young's office and staffers 
in the Senate in the process of working out this legislation.
  I know that many of my colleagues in the House have heard from 
individuals whose lives were saved by this program, but many Members 
may not know that this legislation has been championed by a man whose 
own daughter was saved by the program. Coincidentally, if that is a 
proper word, he decided to go forward with this program quite a few 
years ago, and it was after he decided to go through with this program 
and put it into effect that his daughter was saved by the program.

                              {time}  1545

  That, of course, I am referring to my friend and colleague, the 
gentleman from Florida (Mr. Bill Young).
  The gentleman from Florida (Mr. Young) secured the original 
appropriation which established this important program in early 1987 
through a grant to the Department of the Navy. In this Congress he has 
worked tirelessly to secure reauthorization of the program, and I was 
pleased to support his effort as a cosponsor of H.R. 2202.
  In 1997 the National Marrow Donor Program was responsible for 
facilitating 1,280 unrelated marrow transplants, men and women who 
never met each other but knew that through the simple procedure of 
marrow donation a life would be saved.
  There are approximately 5,000 to 7,000 Americans who could benefit 
from potentially lifesaving unrelated donor transplants, and yet for 
many, matches cannot be found yet. But thanks to the great work of the 
men and women in this program, over 3 million Americans have 
volunteered to be listed confidentially in a registry of the national 
marrow donor program.
  Through innovative cooperation with programs in other countries, 
including Germany, France, Israel, South Africa, Greece, among others, 
patients can search for their tissue type through a worldwide network 
of 37 registries in 29 countries. Through this network the National 
Marrow Donor Program has direct access to over 4 million volunteer 
donors worldwide.
  The language in the bill under consideration today is identical to an 
amendment approved by voice vote in the Subcommittee on Health and 
Environment which I chair. My substitute amendment represented a 
consensus position developed through long negotiations between the 
majority and minority of the Committee on Commerce and the Committee on 
Labor and Human Resources in the other body, the Department of Health 
and Human Resources, the Food and Drug Administration, the National 
Institutes of Health, the National Bone Marrow Donor Program itself, 
and many associations and interested parties who want to see this 
authorization pass this year.
  Mr. Speaker, I want to again express my great appreciation on behalf 
of all of us, and on behalf of the many people out there who have 
benefited from this program and who will continue to benefit, and to 
the gentleman from Florida (Mr. Young) for his efforts to secure this 
reauthorization.
  Mr. Speaker, I urge all of my colleagues to join me in expressing 
their strong support for passage of this important 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.
  Mr. Speaker, I rise in support of the legislation we are considering 
today to reauthorize the National Bone Marrow Donor Registry Program. 
This program has given thousands of patients suffering from diseases 
like leukemia a second chance at life.
  I would like to recognize the work of my chairman, the gentleman from 
Florida (Mr. Mike Bilirakis) and the sponsor of this legislation, the 
gentleman from Florida (Mr. Bill Young), in moving this important bill 
to the floor.
  I extend a special thanks to the gentlewoman from Southern California 
(Ms. Juanita Millender-McDonald), who has worked tirelessly to include 
provisions in the bill to help meet the needs of minority and mixed-
race patients. For patients who suffer from terminal diseases, such as 
cancer and blood and immune system disorders, the transplantation of 
bone marrow offers their only hope for a cure.
  In 1987, with a small grant to the Department of the Navy, the 
National Marrow Donor Program was established to help facilitate bone 
marrow matches between patients and donors and maintain a registry of 
individuals willing to donate marrow. I am pleased that since its 
inception 12 years ago NMDP has facilitated over 6,500 marrow 
transplants between unrelated patients and donors around the world. 
Further, the annual number of transplants has increased by 53 percent 
between 1994 and 1997, since NMDP was transferred to Health Resources 
Services Administration.
  I am pleased the legislation we are considering today builds upon 
this success by fully funding current and new innovative educational 
campaigns to increase the number of willing donors which will 
obviously, in turn, increase the number of successful transplantations. 
Working with patients and physicians, NMDP and its partners can improve 
outreach and increase awareness of the importance of marrow donation. 
This work is especially important if we are going to continue to 
increase the number of minorities, such as African Americans and 
Latinos, who are successfully matched with willing donors.
  Mr. Speaker, we can all take pride in the accomplishments of this 
lifesaving program. I am hopeful we can work together to ensure that 
more sick patients have access to these lifesaving therapies by passing 
this legislation today.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I gladly yield such time as he may 
consume to the gentleman from Florida (Mr. Bill Young), my friend, 
neighbor, and colleague.
  (Mr. YOUNG of Florida asked and was given permission to revise and 
extend his remarks.)
  Mr. YOUNG of Florida. Mr. Speaker, I thank the gentleman for yielding 
me the time.

[[Page H3428]]

  Mr. Speaker, I would have to say this is an exciting moment. This 
legislation, we have worked long and hard to get it in a condition that 
everybody could support. The basic idea here is that it extends the 
authorization for the National Marrow Donor Program, which, as my 
distinguished friends the gentleman from Florida (Mr. Bilirakis) and 
the gentleman from Ohio (Mr. Brown) have said, is a lifesaver.
  It is actually a miracle. This process allows people who really had 
no chance for life, there was no outlook, they were not going to 
survive, but when the opportunity to have a bone marrow transplant came 
about and we were able to find enough donors to create a registry, 
peoples' lives have been saved. People have had a second chance for 
life where none existed before.
  Mr. Speaker, I want to thank the gentleman from Florida (Mr. 
Bilirakis) and the gentleman from Ohio (Mr. Brown) as the ranking 
minority member, and every Member of this Congress. This program, from 
when we began in 1985, we began to try to create this program, and we 
hit a lot of doors that were not open to us. We were told by people 
high up in the realm of medical research that this would never work. In 
fact, one of our committees was told in testimony, well, you will be 
lucky if you could ever get 50,000 people willing to be a bone marrow 
donor.
  Mr. Speaker, as we speak today, there are more than 3 million 
Americans who are in that registry with their marrow typed and ready to 
be a donor. In addition, as the gentleman from Florida (Mr. Bilirakis) 
has pointed out, we have agreements with many other nations, and we are 
exchanging patients and exchanging bone marrow across the ocean itself, 
saving lives around the world.
  I want to thank the many people in the Congress who have made it 
possible to keep this program going. I want to thank the many people in 
the medical community who have been heroes in this effort. I want to 
thank the millions of donors who have been willing to give another 
person a second chance for life. This Nation of ours is full of heroes, 
and the list is lengthy. I wish we had time to mention all of them by 
name, but obviously we do not.
  Mr. BROWN of Ohio. Mr. Speaker, I yield 4 minutes to my friend, the 
gentlewoman from California (Ms. Millender-McDonald), who has shown 
great leadership in coming to our committee and on the floor on this 
issue.
  Ms. MILLENDER-McDONALD. Mr. Speaker, I thank the gentleman for 
yielding me the time, and for his comments.
  Mr. Speaker, I am so proud to be able to stand before the Members 
today, a day when the House will finally vote on one of the most 
important pieces of legislation affecting the health of minorities and 
their families. For more than a year now I have been working to 
increase the number of minorities and people of mixed ancestry on the 
National Bone Marrow Registry, not only through legislation but through 
coordinated outreach efforts throughout this country.
  I would like to thank the gentleman from Florida for working so 
closely with me to make sure that when we reauthorize this program, we 
do everything possible to increase the number of minorities and people 
of mixed ancestry.
  Every year, Mr. Speaker, more than 30,000 people are diagnosed with 
one of the 60 diseases that can be cured with a bone marrow transplant. 
Of those, only 30 percent will have a family member who is a marrow 
match. That means 20,000 people each year need to find an unrelated 
marrow donor.
  There are almost 2 million registered donors in this country, an 
increase of more than 260 percent since the beginning of 1993. But of 
these impressive numbers of transplants, Mr. Speaker, minorities 
continue to receive far fewer transplants.
  In fact, in 1997, only 65 African Americans received transplants, 105 
Hispanic Americans received transplants, and approximately 37 people of 
mixed ancestry received transplants. During that same year, however, 
1,021 caucasians received transplants; so we can see, Mr. Speaker, the 
critical need for this.
  Again, let me thank the gentleman from Florida (Mr. Young) for his 
leadership on this issue. I urge all of my colleagues to join me in 
voting yes for H.R. 2202. The day has finally come to close the gap on 
this critical minority health care disparity.
  Mr. YOUNG of Florida. Mr. Speaker, will the gentlewoman yield?
  Ms. MILLENDER-McDONALD. I yield to the gentleman from Florida.
  Mr. YOUNG of Florida. I just wanted to express to the Speaker and the 
Members, Mr. Speaker, my appreciation for the really hard work that the 
gentlewoman has done in this effort.
  We introduced the bill almost a year ago, as the gentlewoman is well 
aware, and because of the bureaucracy involved, it has taken a while, 
but the gentlewoman has stayed right there on track and helped keep it 
moving. I mentioned many of the heroes, and the gentlewoman is one of 
the heroes at the top of the list.
  Ms. MILLENDER-McDONALD. Mr. Speaker, I thank the gentlemen from 
Florida, Mr. Young and Mr. Bilirakis, for their leadership.
  Mr. BILIRAKIS. Mr. Speaker, I yield such time as he may consume to 
the gentleman from Michigan (Mr. Upton).
  (Mr. UPTON asked and was given permission to revise and extend his 
remarks.)
  Mr. UPTON. Mr. Speaker, I rise this afternoon in strong support of 
H.R. 2202, the National Bone Marrow Registry Reauthorization Act of 
1998.
  I want to also commend my good friend and colleague, the gentleman 
from Florida (Mr. Young) for introducing and working hard and 
diligently for the consideration of this legislation, and my 
subcommittee chairman, the gentleman from Florida (Mr. Bilirakis) and 
his ranking member, the gentleman from Ohio (Mr. Brown), for the smooth 
passage through the committee process.
  Mr. Speaker, this program is a vital one. This holds out promise for 
nearly the approximately 12,000 people each year who are diagnosed with 
diseases for which bone marrow transplantation may offer the 
possibility of a cure.
  The National Bone Marrow Donor Registry established by this program 
provides for a central registry of bone marrow donors, linking a 
network of 100 donor centers, 111 transplant centers, and 11 
recruitment groups across the country.
  The registry is also a research organization, studying the 
effectiveness of unrelated marrow transplants. This program has been 
effective in increasing the availability of unrelated bone marrow 
transplants, which have grown in number from 200 in 1989 to almost 
1,300 in 1997 last year.
  In my State of Michigan our donor centers have, as of March of this 
year, registered over 92,000 donors and facilitated some 291 
transplants. However, estimates suggest that those who could benefit 
from bone marrow transplants far outnumber the actual recipients by a 
2- or 3-to-1 margin. All of us have individuals in our districts hoping 
desperately that they will be successfully matched with a volunteer 
donor. For too many, that hope will not be realized.
  Mr. Speaker, this is particularly true for minority individuals, who 
are underrepresented in the donor registry. This legislation that we 
are considering this afternoon strengthens the program's focus on 
minority recruitment.
  I encourage all of us here to register as a volunteer donor. I did, 
because of my relationship with the gentleman from Florida (Mr. Young). 
The process is very simple. You have to go to a donor center and give a 
blood sample. That is all it is. You can literally give the gift of 
life to another individual through this simple act.
  Mr. DELAHUNT. Mr. Speaker, I rise in strong support of H.R. 2202, the 
National Bone Marrow Registry Reauthorization Act of 1998.
  For over a decade, the National Bone Marrow Program has brought hope 
to the over 30,000 patients diagnosed each year with leukemia and more 
than 60 otherwise fatal blood disorders. From modest beginnings, the 
program now maintains a registry of millions of potential donors.
  H.R. 2202 will expand and improve the National Bone Marrow Registry, 
establishing new services to help patients locate donors, redoubling 
efforts to recruit donors within underserved populations, and 
encouraging continued advances in the science of marrow 
transplantation.
  For me, this bill has very personal meaning. It calls to mind a very 
special young woman and her family in Duxbury, Massachusetts, whom I 
have had the honor of knowing since I learned of their story in the 
local press.

[[Page H3429]]

  The young woman is Brittany Lambert, who suffers from a rare blood 
disorder called myelodysplasia, for which she received a bone marrow 
transplant from an unrelated donor found through the registry. When 
Brittany's first transplant failed, she needed a second one. Through it 
all, she has shown qualities of courage and tenacity that would make 
any parent proud.
  Brittany has been lucky in at least one respect: her parents, Jim and 
Linda Haehnel, and her sister, Brianne, have been with her every step 
of the way. In fact, when I met Jim Haehnel back in February of 1997, 
he was organizing a screening drive for Brittany at an Air National 
Guard base in my district. I was among the 300 people who registered as 
potential donors on that occasion, and I promised Jim that I would do 
everything I could to see that more people have the opportunity to join 
in this effort.
  The Haehnel family has shown tremendous fortitude in the face of 
repeated setbacks. They have continued to do everything they can to see 
that kids like Brittany get a second chance at life.
  It is because of the heroism and selflessness of people like Brittany 
and her family that this program exists. And it is because of them that 
I feel so strongly about this effort. I am proud to join with my 
colleague, Mr. Young, in cosponsoring this legislation, and I hope that 
all of my colleagues will give it their support.
  Mr. PORTER. Mr. Speaker, I rise to commend my good friend, Bill 
Young, for his tireless efforts to promote and strengthen the National 
Bone Marrow Donor Registry. There is no stronger advocate in the 
Congress for this vital public policy initiative than Bill. His work 
has provided a second chance at life for thousands of individuals who 
suffer from debilitating illness and fatal blood disease. Because of 
Bill's outstanding leadership, the registry has grown tremendously. I 
am proud to cosponsor this vital legislation and I will continue to 
support Bill's important efforts.
  Mr. BROWN of Ohio. Mr. Speaker, I have no further requests for time, 
and I yield back the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I have no further requests for time, and 
I yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Shimkus). The question is on the motion 
offered by the gentleman from Florida (Mr. Bilirakis) that the House 
suspend the rules and pass the bill, H.R. 2202, 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.

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