[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]




 
   UTILIZING PUBLIC POLICY AND TECHNOLOGY TO STRENGTHEN ORGAN DONOR 
                                PROGRAMS

=======================================================================

                                HEARING

                               before the

                  SUBCOMMITTEE ON INFORMATION POLICY,
                     CENSUS, AND NATIONAL ARCHIVES

                                 of the

                         COMMITTEE ON OVERSIGHT
                         AND GOVERNMENT REFORM

                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED TENTH CONGRESS

                             FIRST SESSION

                               __________

                           SEPTEMBER 25, 2007

                               __________

                           Serial No. 110-57

                               __________

Printed for the use of the Committee on Oversight and Government Reform


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              COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM

                 HENRY A. WAXMAN, California, Chairman
TOM LANTOS, California               TOM DAVIS, Virginia
EDOLPHUS TOWNS, New York             DAN BURTON, Indiana
PAUL E. KANJORSKI, Pennsylvania      CHRISTOPHER SHAYS, Connecticut
CAROLYN B. MALONEY, New York         JOHN M. McHUGH, New York
ELIJAH E. CUMMINGS, Maryland         JOHN L. MICA, Florida
DENNIS J. KUCINICH, Ohio             MARK E. SOUDER, Indiana
DANNY K. DAVIS, Illinois             TODD RUSSELL PLATTS, Pennsylvania
JOHN F. TIERNEY, Massachusetts       CHRIS CANNON, Utah
WM. LACY CLAY, Missouri              JOHN J. DUNCAN, Jr., Tennessee
DIANE E. WATSON, California          MICHAEL R. TURNER, Ohio
STEPHEN F. LYNCH, Massachusetts      DARRELL E. ISSA, California
BRIAN HIGGINS, New York              KENNY MARCHANT, Texas
JOHN A. YARMUTH, Kentucky            LYNN A. WESTMORELAND, Georgia
BRUCE L. BRALEY, Iowa                PATRICK T. McHENRY, North Carolina
ELEANOR HOLMES NORTON, District of   VIRGINIA FOXX, North Carolina
    Columbia                         BRIAN P. BILBRAY, California
BETTY McCOLLUM, Minnesota            BILL SALI, Idaho
JIM COOPER, Tennessee                JIM JORDAN, Ohio
CHRIS VAN HOLLEN, Maryland
PAUL W. HODES, New Hampshire
CHRISTOPHER S. MURPHY, Connecticut
JOHN P. SARBANES, Maryland
PETER WELCH, Vermont

                     Phil Schiliro, Chief of Staff
                      Phil Barnett, Staff Director
                       Earley Green, Chief Clerk
                  David Marin, Minority Staff Director

   Subcommittee on Information Policy, Census, and National Archives

                   WM. LACY CLAY, Missouri, Chairman
PAUL E. KANJORSKI, Pennsylvania      MICHAEL R. TURNER, Ohio
CAROLYN B. MALONEY, New York         CHRIS CANNON, Utah
JOHN A. YARMUTH, Kentucky            BILL SALI, Idaho
PAUL W. HODES, New Hampshire
                      Tony Haywood, Staff Director


                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on September 25, 2007...............................     1
Statement of:
    Burdick, James, M.D., Director, Division of Transplantation, 
      U.S. Department of Health and Human Services; Timothy 
      Pruett, M.D., president, United Network for Organ Sharing; 
      Susan Dunn, president-elect, Association of Organ 
      Procurement Organizations; Clive O. Callender, M.D., 
      founder, Minority Organ Tissue Transplant Education 
      Program; Jeffrey S. Crippin, M.D., past president, American 
      Society of Transplantation; and Elizabeth M.P. Rubin.......    20
        Burdick, James, M.D......................................    20
        Callender, Clive O., M.D.................................    53
        Crippin, Jeffrey S., M.D.................................    69
        Dunn, Susan..............................................    39
        Pruett, Timothy, M.D.....................................    32
        Rubin, Elizabeth M.P.....................................    76
    Walls, Everson, kidney donor, former player, Dallas Cowboys..     6
Letters, statements, etc., submitted for the record by:
    Burdick, James, M.D., Director, Division of Transplantation, 
      U.S. Department of Health and Human Services, prepared 
      statement of...............................................    23
    Callender, Clive O., M.D., founder, Minority Organ Tissue 
      Transplant Education Program, prepared statement of........    55
    Clay, Hon. Wm. Lacy, a Representative in Congress from the 
      State of Missouri, prepared statement of...................     3
    Crippin, Jeffrey S., M.D., past president, American Society 
      of Transplantation, prepared statement of..................    71
    Dunn, Susan, president-elect, Association of Organ 
      Procurement Organizations, prepared statement of...........    41
    Pruett, Timothy, M.D., president, United Network for Organ 
      Sharing, prepared statement of.............................    35
    Rubin, Elizabeth M.P., prepared statement of.................    79
    Walls, Everson, kidney donor, former player, Dallas Cowboys, 
      prepared statement of......................................    10


   UTILIZING PUBLIC POLICY AND TECHNOLOGY TO STRENGTHEN ORGAN DONOR 
                                PROGRAMS

                              ----------                              


                      TUESDAY, SEPTEMBER 25, 2007

                  House of Representatives,
   Subcommittee on Information Policy, Census, and 
                                 National Archives,
              Committee on Oversight and Government Reform,
                                                    Washington, DC.
    The subcommittee met, pursuant to notice, at 2:08 p.m. in 
room 2247, Rayburn House Office Building, Hon. Wm. Lacy Clay 
(chairman of the subcommittee) presiding.
    Present: Representatives Clay, Reyes, and Turner.
    Also present: Representatives Lynch, and Costa.
    Staff present: Darryl Piggee, staff director/counsel; Jean 
Gosa, clerk; Adam C. Bordes, professional staff member; Nidia 
Salazar, staff assistant; Michelle Mitchell, legislative 
assistant, Office of William Lacy Clay; Allyson Blandford and 
Jay O'Callaghan, minority professional staff members; and 
Benjamin Chance, minority clerk.
    Mr. Clay. The Committee on Oversight and Government Reform, 
Subcommittee on Information Policy, Census, and National 
Archives will come to order.
    Let me say good afternoon and welcome to today's hearing 
examining ongoing efforts to increase public participation in 
organ donor programs. Organ donation is one of modern 
medicine's most effective life-saving therapies. In fact, over 
the last 20 years more than 390,000 organ transplants have been 
performed successfully. Unfortunately, during that same period 
of time, the waiting list for an organ transplant has more than 
doubled. Last year in the United States over 6,000 Americans 
died while waiting for their lives to be renewed through 
transplantation.
    As we convene this hearing, nearly 97,000 patients are 
waiting for an organ donation. This includes over 1,300 anxious 
men, women, and children from my District in Missouri. After 
personally witnessing the devastating effects of patients 
trapped on dialysis, I am convinced that Congress must play a 
vital role in elevating the issue of organ and tissue donation 
to become a National priority.
    Yesterday I introduced H.R. 3635, the Everson Walls and Ron 
Springs Gift for Life Act to raise awareness and increase organ 
donation. This legislation will provide assistance to State 
organ donor programs and track the long-term health of 
individuals generous enough to become organ donors.
    In addition, it establishes a national organ and tissue 
donor registry resource center charged with providing 
information, technical assistance, and grants to donor 
registries administered by the States.
    I would like to thank members of the transplant community 
for assisting me in crafting this legislation. Today we welcome 
a group of distinguished panelists from both the medical and 
patient communities. I look forward to their testimonies.
    I also want to welcome two guests to this committee, one 
being Representative Jim Costa of California, who is also part 
of the Organ and Tissue Donor Caucus here in the House. Thank 
you for being here, Mr. Costa. You may make an opening 
statement if you care.
    [The prepared statement of Hon. Wm. Lacy Clay follows:]
    [GRAPHIC] [TIFF OMITTED] T3028.001
    
    Mr. Costa. Thank you very much, Chairman Clay, for inviting 
me to participate in this afternoon's hearing. Your support and 
your passion for this issue is well known as an advocate on 
behalf of organ and tissue donation. Our collective efforts I 
believe will make a great difference.
    I am pleased that, along with you, other of our colleagues 
share in joining as Members of the Congressional Organ and 
Tissue Donation Awareness Caucus, a new caucus, a bipartisan 
caucus, to advocate on behalf of organ and tissue donations, 
which too often, as you noted in your opening statement, is a 
forgotten part of the health debate.
    It is great to see athletes here today like Mr. Everson 
Walls. We hope that he will be joined by Mr. Springs. We all 
know that football players--it is the season--are often 
idolized by their fans and revered for their athletic prowess, 
but Mr. Walls comes this afternoon and shares the passion with 
us because he is not just a holder of a Super Bowl Ring or one 
who mustered 57 career interceptions--I hope I got that 
correct.
    Sadly, I believe that a number of those interceptions were 
against the 49ers, my home team. But, nonetheless, with great 
respect, Mr. Walls is a hero in every sense of the word. His 
friend, Ron Springs, who we hope to acknowledge, as well, was 
the recipient of Mr. Walls' awareness and understanding that he 
had the gift of life.
    What we are talking about are over 100,000 people, as the 
chairman noted, who are on the waiting list for organ 
transplants. Nearly 6,000 of them pass away every year before a 
much-needed organ becomes available to them.
    So we as Members of Congress think we have to do more 
through our legislative efforts, through our advocacy in 
creating greater awareness of this issue, and support and 
encourage facilitating and collaborating organ and tissue 
donation process.
    We have a number of witnesses here who will testify in both 
the first and the second panel. I am pleased to see Eunice and 
the roundtable of support groups are an important part of this 
collective effort. We will hear later from Dr. Timothy Pruett 
and his predecessor, Dr. Sue McDiarmid, who is a long-time 
friend of mine who first brought my own awareness of the 
importance of the gift of life; that, in fact, we have so much 
that has been made in the way of progress in the way of medical 
science; and that we, as human beings, have the opportunity to 
expand and to extend others through that gift of life.
    So, Mr. Chairman, I am looking forward to the testimony. We 
have over 300,000 minorities in my District. Nearly 80,000 
nationwide are currently on the transplant list, yet too many 
of the minority donors still remain disproportionately low. I 
know that Mr. Walls, through your testimony and your efforts 
with us, you will help us expand that awareness. With the help 
of strong role models such as yourself, Congressman Clay, and 
Dr. Callender, I know that we stand to make great success and 
progress in our efforts.
    This is truly wonderful and potentially a great effort and 
a noble one that we embark upon today.
    Thank you very much, Mr. Chairman.
    Mr. Clay. Thank you very much, Mr. Costa, for that opening 
statement.
    Now I would like to recognize my colleague, who happens to 
be chairman of the House Intelligence Committee, Mr. Silvestre 
Reyes.
    Thank you for being here.
    Mr. Reyes. Thank you, Chairman Clay. Although I won't be 
able to stay for the hearing, because I just left one of my 
own, I did want to come by and thank publicly Everson Walls, or 
Cubby as he is known in Dallas, Cubby Walls, for really being 
the driving force behind the Everson Walls/Ron Springs Gift for 
Life Legislation. Thank you, Mr. Chairman, for forging that 
legislation, because it really has, I think, the ability to 
make a real difference in so many different communities around 
our country, and getting the message out, which is a very good 
news story that speaks volumes about not just friendship but 
commitment to a teammate.
    We are all so very proud of Everson Walls for what he did 
for Ron Springs, but, more than that, I think for what he is 
about to do through our collective efforts for organ donors and 
educating potential organ donors and so many, we hope, 
thousands and thousands of recipients that will benefit and 
enjoy a new, better quality of life through this legislation.
    I am proud to be here. Most of all, I am proud to know 
Everson Walls and the kind of character that he brings that is 
the springboard for this legislation.
    Thank you, Mr. Chairman.
    Mr. Clay. Thank you very much, Mr. Chairman.
    Now that the world and C-Span community knows that Everson 
Walls' nickname is Cubby, we welcome him, too.
    Let me say, without objection, Members and witnesses may 
have 5 legislative days to submit a written statement or 
extraneous materials for the record.
    Now, if there are no additional opening statements, the 
subcommittee will now receive testimony from the witnesses 
before us today.
    Ms. Rubin is on her way, so we will start with testimony 
with Mr. Walls. Let me first introduce him.
    Everson Walls is a retired NFL All-Pro cornerback, having 
played 14 seasons with the Dallas Cowboys, New York Giants, and 
Cleveland Browns. During his career he was a four-time Pro Bowl 
selection, three-time All-Pro selection, and was part of the 
New York Giants' 1990 Super Bowl championship team.
    More importantly, in February of this year he became a 
kidney donor to his long-time teammate and friend, Mr. Ron 
Springs. Together, Mr. Walls and Mr. Springs now lead the Gift 
of Life Foundation in order to promote awareness, early 
detection, and prevention of kidney disease and its associated 
illnesses.
    Let me thank you for being here today.
    It is the policy of the committee to swear in all witnesses 
before they testify. I would like you to please stand and raise 
your right hand.
    [Witness sworn.]
    Mr. Clay. Let the record reflect the witness answered in 
the affirmative.
    Thank you.
    I ask that you give us your statement. There is a 5-minute 
rule, and, of course, if you go over we will not flag you, Mr. 
Walls. [Laughter.]
    You may proceed.

STATEMENT OF EVERSON WALLS, KIDNEY DONOR, FORMER PLAYER, DALLAS 
                            COWBOYS

    Mr. Walls. Thank you, Congressman Lacy Clay. I want to also 
thank some of your staff that have been so helpful in preparing 
me for this hearing, as well as from the moment that I met 
you--I think that was back in July of this year. They have been 
very helpful in helping in, if nothing else, get the word out 
about becoming a living organ donor. That would be Michelle 
Mitchell, Darryl Piggee, Adam Bordes.
    Also I want to thank Congressman Silvestre Reyes and the 
people on his staff, Perry, Finney, I believe her name is, 
Brody. She was also very helpful. And Marvin Steel, who is also 
with Congressman Clay's staff, as well.
    The day that is so famous now in my life and in many other 
people's lives is February 28th. That was the day that I 
decided that I would lay down my life for a good friend of mine 
named Ron Springs. You know, whenever you make a decision as 
strong as this one that is as impactful as this one was, then 
there are just so many people that you have to consider, 
because, after all, any time you make this type of decision you 
don't really make it by yourself. You are always shaped by not 
just the experiences that you have had in life, but also the 
people that you have come across.
    My Mom--she is not here now, but she is back in Dallas--as 
well as my father, I must give some notice to them. My father 
is Weldon Walls. My mother is Weila Walls. They would obviously 
be extremely proud to be here right now but they couldn't make 
it. But as soon as I get back home, I am sure they are going to 
want to hear everything blow by blow on exactly what happened 
here.
    And yes, Mr. Costa, I did get a lot of interceptions 
against the San Francisco 49ers, but, in defense of the 49ers, 
I got more against the Washington Redskins. [Laughter.]
    Mr. Costas. I like to hear that.
    Mr. Walls. So if there are any Cowboy fans out there, I am 
sure they really appreciate maybe my presence, as well as Mr. 
Spring's spirit being here, as well, with us.
    You know, any time you talk about making a life-changing 
decision, as I said, there are so many people that are involved 
with that. I am just a young man from Dallas, TX, from a small 
community called Hamilton Park. It is an all-African-American 
community in Dallas that has been established since 1954. We 
have had a lot of great men and women come out of that 
community. I think they would all be so proud of the fact that 
I am here right now speaking on this bill that you are trying 
to pass.
    One person I would have to say, Ron Springs wants to thank 
anyone for what I have done for him. It is a long line of other 
people that he should thank. No. 1 is, obviously, my wife 
Shreill. Shreill is a person that is great friends with Ron's 
wife Adriene. They are the kind of people that they could hang 
together all day in any event, whether it is a cookout, family 
reunion, graduation, or whatever. They can be with each other 
for 8 hours, and when they come home they are going to give 
each other a call and talk about what went on at that 
particular event. She loves Ron as if he was a brother, and I 
knew that without her support that there is no way I would be 
able to do this for Ron.
    You look at the people that have really shaped my character 
in the past. You spoke of character, Congressman Clay. I would 
be remiss if I did not bring up the late Coach Eddie Robinson 
from Grambling State University. At the age of 17 I met this 
man, and his influence on my life was just astronomical. 
Obviously I was raised well by my parents, but when you start 
talking about raising a child, you have to go back to the old 
adage of it takes a village to raise a child, and Coach 
Robinson was aware of that. He was always a person that didn't 
care much about how a person played football, because he always 
wanted you first to emulate an American citizen in life, and if 
he knew that you were going to be a great American citizen in 
life, then he would always feel that he could make you into a 
good football player. Consequently, we had championship years 
there, but that pales in comparison to the lessons that Coach 
Robinson taught me going through life.
    I have been associated with so many different types of 
coaches. Obviously, playing for 13, 14 years in the League you 
should be associated with some good players and good coaches. 
Tom Landry from the Dallas Cowboys in the 1980's was one of the 
most stern and disciplined and successful coaches to come 
through the NFL. I went off from the Cowboys to play with the 
New York Giants, Coach Bill Parcels, who was one of the most 
personable, as well as stern coaches I have ever been around. 
Being around such intelligent coaches such as Bill Belichick 
with the Cleveland Browns, as well.
    Any time you associate with these type of people, then you 
would have to be a fool not to really learn something from 
them, not just for football but also in life.
    My kids are also very proud of me, as well as I am very 
proud of them. My oldest daughter, Charis Walls, she is a 
graduate of Southern University. My son, Cameron Walls, is now 
attending Texas Southern University. These are my kids, and 
they are people that really, really care so much for what I did 
for Ron, as well.
    Our families are so close that it was a really easy 
decision for me to make. Everyone always asks me, well, how 
could you lay down your life for someone who is not a family 
member. When you look at Ron Springs and you look at the 
dynamics of both of our families, it is as if we are related, 
because we are not only close through the careers that Ron and 
I had, but also through our wives, as well as our offspring. 
His daughter Era and my daughter Charis are best friends. His 
younger daughter Ashley and my son Cameron are also very good 
friends. So when you talk about something that I did, it is 
almost as if he is a family member.
    The one thing that we realize about organ donation is that 
it affects everyone. It can positively affect anyone in the 
future who may have any types of problems from kidney disease 
on up to type II diabetes.
    Ron's situation was as unique as anyone's. He is just like 
anyone else, except that he is as stubborn a football player 
that you want to meet. He is a guy that felt that, once he 
found out that he had chronic kidney disease, he ignored it, 
just as any normal person would do. He was in denial about it, 
just as any normal person would be. But the one thing about it 
was, as he started to realize how his body was being affected 
and afflicted by chronic kidney disease and type II diabetes, 
by that time it was almost too late. He had an amputation of 
his right foot. All of his toes on his left foot are also 
amputated. He was on dialysis for 3\1/2\ years.
    As I talked to his transplant doctor, Dr. Dick Dickerman, 
Dr. Dickerman noted to me that Ron would not make it to his 5th 
year of dialysis. If anyone knows anything about dialysis, it 
is a process that is extremely invasive and literally draining 
to the human body. All of your blood is drained from your body, 
it goes through a filter, and it goes back inside your body. 
You are talking about a process that takes up to 4 to 5 hours a 
day. Well, Ron Springs was going through that for 3 days a week 
for 3\1/2\ years. He was on that kidney waiting list for 3\1/2\ 
years, as well. When it came down to his family trying to help 
him out, trying to give him aid, he had a niece that was 
willing to help, he had a nephew that also was willing to help. 
Those two procedures were not successful.
    When you take a look at the peaks and valleys that anyone 
that is afflicted with chronic kidney disease and type II 
diabetes will go through, it is really trying not just on you 
physically, but it is trying on your spirit. I have to commend 
Ron, himself, for being so heroic in not giving up on life, 
because when you take a look at what could happen with anyone 
that goes through the peaks and valleys that Ron went through, 
he could have easily given up on the process. He could have 
easily given up on life. But because of his strong spiritual 
connection, he chose to hang in there. He chose to be strong, 
not just for himself, but also he realized that his family and 
friends cared so much about him.
    I think that is what prompted me, among other things, to 
help Ron Springs. You know, it is one thing about being called 
a hero. You are really put up on a pedestal. But what I want 
people to know is you don't want to put that pedestal up too 
high, because we want everyone to realize that as long as you 
have two good kidneys, that you could qualify to become a 
living organ donor.
    We don't want anyone out there to think that this is an 
unattainable feat. This is something that can be done by 
anyone, whether he is a football player, whether he is a 
Congressman. It doesn't matter. This is something that can be 
done by anyone.
    I just want to say that I was just fortunate to be the one 
to do that. We have felt that we owe it not just to our 
families, not just to our friends, but to our community to 
start the foundation that we started. It is called the Ron 
Springs and Everson Walls Gift for Life Foundation. That 
foundation is going to be there to not just provide access and 
awareness to the problems with chronic kidney disease and type 
II diabetes, but our long-term goal would be to bring the care 
and that awareness to the people.
    Obviously, it affects everyone in the country, but we want 
to really bring it to the under-served areas of the country and 
allow them to understand that, No. 1, you need to be tested 
frequently for chronic kidney disease, and, No. 2, if you are a 
candidate to be a donor, then you should really consider doing 
that?
    Mr. Clay. Let me stop you there, Mr. Walls, and say thank 
you. We just got word that we will shortly be taking votes on 
the floor, but what we want to do now is try to ask you some 
questions and get your comments.
    Mr. Walls. Sure.
    [The prepared statement of Mr. Walls follows:]

    [GRAPHIC] [TIFF OMITTED] T3028.002
    
    [GRAPHIC] [TIFF OMITTED] T3028.003
    
    [GRAPHIC] [TIFF OMITTED] T3028.004
    
    Mr. Clay. I will go out of order and recognize my colleague 
and friend, Jim Costa of California. You may proceed.
    Mr. Costa. Thank you very much, Mr. Chairman, again, for 
your collaboration and stepping up to the plate, as we say, to 
be one of the original co-chairs of the Organ Donor and Tissue 
Caucus. I think collectively we have great opportunity to do 
good things.
    Mr. Walls, I suspect your friend and colleague, Mr. 
Springs, will have an opportunity to see your testimony here if 
he is not watching it live, and smile a great deal for the 
passion with which you have spoken of your friendship and your 
families. Certainly, that is the type of information and the 
role model that we have to convey to others out there, because, 
as we know, the list is far too long and too many die each year 
waiting, as your friend Mr. Springs may have if it weren't for 
your willingness to do your part as a friend.
    But we know that as we try to deal with registry lists, as 
we try to pursue other efforts that are contained in this 
legislation that Congressman Clay has written, that I intend to 
support wholeheartedly, we need to figure out other ways that 
we can use forums, the media, the organizations, some that are 
reflected here today, to get that message out, and, as I noted 
in my testimony, especially within minority communities.
    I mean, I don't know how many here in the audience, but I 
carry, if I can find it here, my California driver's license, 
and on the back of the driver's license we have the option to 
determine whether or not we want to be listed on registry as a 
potential organ donor. This morning I saw on the Today Show 
where a family was interviewed in which their daughter had been 
tragically killed a year ago, and yet she had spoken, even as a 
16 year old, months earlier about wanting to be an organ donor 
if at some point something happened. Sadly, something did 
happen, but her parents spoke with great passion, as you do.
    More of this effort needs to take place.
    I want to ask you, because I have my own anecdotal stories, 
as we all do, when did you first become aware of the potential 
of, as we say, the gift of life, the potential that you and all 
of us have as an organ donor? Is it through your friendship 
with Ron Springs, or was there a previous awareness that came 
to you?
    Mr. Walls. Well, Congressman, I just have to say that 
diabetes, fortunately for my family, is nowhere in our history. 
That is what made what Ron and I went through pretty unique. I 
learned everything about chronic kidney disease and diabetes 
through my friendship with Ron and the problems that he was 
having.
    You know, Ron is typical as any football player, got a lot 
of pride. You know, when it comes to having these type of life-
changing problems, we try and sweep them under the rug.
    Mr. Costa. Right.
    Mr. Walls. But by listening to the conversations between my 
wife Shreill and his wife Adriene by listening to those 
conversations----
    Mr. Costa. It came home?
    Mr. Walls. It came home. The conversations would really 
upset my wife. I didn't really even get the original 
information from Ron, himself. But then, as I started to delve 
more into it, as I started to think about what can I do to help 
my friend, that is when I started to do my research.
    Mr. Costa. You did your homework?
    Mr. Walls. I did my homework. And it was so strange that, 
you know, they talk about diabetes being the silent killer.
    Mr. Costa. Yes.
    Mr. Walls. Well, I was typical of that, because no one 
really wants to talk about it. That is our goal here today, to 
make sure and get that out to the public as much as possible.
    Mr. Costa. Well, Mr. Walls, we look forward to your active 
participation as a partner in our collective effort. I know Mr. 
Clay and myself and other colleagues have visited dialysis 
units within our Districts, both with chronic and acute 
dialysis. I think you very, very vividly described what I have 
seen when these patients come to these clinics three times a 
week hoping against hope that there may be a better future for 
themselves and their families.
    This is very important work this afternoon. Mr. Clay, I 
look forward to continuing to work with your efforts.
    Mr. Clay. Thank you so much, Mr. Costa. Let me also thank 
you for your leadership on reviving our caucus. I am looking 
forward to working with you and the rest of our colleagues on 
issues like this that raise the level of awareness as far as 
organ donation and tissue donation are concerned. Thank you.
    Mr. Costa. Thank you.
    Mr. Clay. Mr. Walls, let me ask you. You know, we are all 
aware of health disparities, as Mr. Costa said, and barriers to 
adequate medical care facing the minority community. In your 
opinion, are community care providers such as community health 
clinics and others adequately focusing their attention on 
preventive measures in order to reduce the number of patients 
with chronic kidney disease? Do you think there is enough 
attention on it?
    Mr. Walls. You know, Congressman, I would have to say that 
the attention really needs to begin sooner than that. I think 
when you start talking about the food that we serve our kids in 
the elementary schools which leads to childhood obesity, when 
you start talking about the lack of interest in the nutrition 
of all Americans here in this country, I think to me that is at 
the root of what the problem is with chronic kidney disease and 
type II diabetes.
    If you want to talk about prevention, then it really needs 
to start first of all in the community. It needs to start in 
the home, and you need to be aware of what you feed your 
children, what is healthy for them, and be aware of the 
history, not only in all Americans, but especially in 
minorities, and that our culture, itself, sometimes allows us 
to be subject to these problems stemming from childhood 
obesity.
    Mr. Clay. Thank you for that response.
    One area of concern in the medical ethics community is the 
level of donor education provided to potential living donors. 
From your experience, did you feel as though your transplant 
team worked to provide you enough information about the 
potential risk and complications associated with organ 
donation?
    Mr. Walls. Well, I have to tell you, Congressman, when I 
first decided to do this I was involved with some Kidney 
Foundation programs and things of that nature, because Ron was 
involved with it and I wanted to see what was going on with 
that. I have to say that when I first walked into a room 
everyone knew I was going to donate a kidney to Ron, and I felt 
like I was steak on a plate because everyone was looking at me 
like, ah, fresh kidneys. [Laughter.]
    That is something that I just had to get over. That was my 
own stigmatism there that I was dealing with. But I will say 
that the process, itself, in my case was just extremely 
helpful. It was extremely supportive, because, as a donor, the 
medical community, the team that I dealt with, they wanted to 
make sure that the donor is the one that is pampered. That is 
the one that is really the important piece of this puzzle. The 
recipient, himself, of course they want him to receive a 
healthy kidney, but they want to make sure that the donor is 
perfectly comfortable with the process, because any time you 
talk about laying your life down for someone, having major 
surgery, they don't want any apprehensions from the potential 
donor, himself. That is the way they made me feel, and I was 
very happy about that, and that is what made me feel 
comfortable about going through with the entire process.
    Mr. Clay. Now when we initially met and you shared with me 
the fact that Ron Springs had no idea that you were going to 
donate your kidney to him, just how did you break the news to 
Mr. Springs?
    Mr. Walls. Well, that is a crazy story because I didn't 
break the news to him. I don't know if you are aware, but Ron's 
son, Shawn Springs, plays here in Washington for the Redskins.
    Mr. Clay. Yes.
    Mr. Walls. He wears my number 24 because I am his 
godfather.
    Mr. Clay. You don't hold that against him that he plays for 
the Redskins, do you?
    Mr. Walls. I don't hold it against him. It doesn't help him 
catch interceptions any, but it does help his reputation. 
[Laughter.]
    I will say that, you know, when you talk about a guy like 
Ron Springs, Ron is a guy that has been a very vocal person. He 
was always the lawyer of the locker room. Some would say he has 
a big mouth. Well, his son has a big mouth, as well. His son 
did a story in the Washington Post while I was trying to keep 
this whole thing under wraps, and as he was being interviewed 
about his father's health, because it was known that his father 
was in declining health, then he let it slip that Everson is 
considering becoming an organ donor to his father. Once that 
got out not only in the Washington Post, in the days of the 
Internet, in less than 30 minutes it was on the cover of 
ESPN.com. So Ron found out through the media that this was 
going to be done, and of course when he called me he was so 
excited about it. I said yes, Ron, after taking the information 
that you gave me I didn't tell you that I was a complete match. 
Of course, Ron says, ``Well, hell, let's get this done.'' 
[Laughter.]
    I said, ``When do you want to get it done?'' He said, 
``Let's do it tomorrow.'' I said, ``Ron, I need some time to 
tie down my family affairs. I have to have major surgery 
here.'' But after a little bit of negotiating and brow-beating 
on his part, we decided to not just come up with a date, but in 
our case, because of us being high-profile citizens, being 
former athletes in the city of Dallas, we had to give a false 
date, because if we didn't then the hospital would have been 
inundated with phone calls about when is this surgery going to 
happen, and you really can't have that when it comes to 
transplant surgery.
    What we did was gave a false date in March, and then we 
actually surprised everyone and came up with the surgery at the 
end of February on the 28th and it worked out well for 
everyone.
    Mr. Clay. And I am so glad it did.
    You were required to go through both a physical and mental 
screening process to ensure you were a suitable candidate for 
donating a kidney. I guess that was after you made up your mind 
that you were going to go through with this. What kind of 
experience was that? I mean, did they adequately prepare you 
mentally for, I guess, the pitfalls if anything went wrong?
    Mr. Walls. You know, one thing that concerned me then and 
still concerns me now, obviously, you know, when you give your 
kidney or any type of organ you are never sure exactly how long 
it is going to last. I have heard some stories out there from 
others who have received organ donations, and, of course, there 
is a time life to these parts. The kidney may last 20 years for 
Ron. It may only last 5 years for Mr. Springs. Those were 
always my concerns, No. 1.
    No. 2 is I was always in shape physically. I try to stay in 
shape. I jog. I work out a lot, swim, and do whatever I can do 
to try and stay physically fit, so I had no problems with the 
barrage of tests that came my way. They have a test called 
glowfill, where you actually have to swallow iodine and get 
shot up with a glowfill substance that is allowed to test. It 
allows your specimen to illuminate and they are able to better 
see exactly what is inside of you and just how healthy your 
kidneys are. It is a very invasive procedure that you just 
don't want to step into lightly. I had to take a CAT scan, 
itself, where they shoot you up with another substance that 
goes through your body, and it feels almost like mint going 
from your arm to the top of your head and it is very 
uncomfortable, and that was for the CAT scan, itself.
    Where Mr. Springs was afraid I might have a problem was on 
the mental exam. [Laughter.]
    There was a 500-question mental evaluation that he wasn't 
sure I was going to pass. Thank God I passed through that with 
flying colors.
    So in the midst of the little humor that we had while these 
tests were going on, it was still a process that I just will 
not forget.
    Mr. Clay. Physically and mentally, how is Mr. Ron Springs 
doing?
    Mr. Walls. Mr. Springs mentally has always had all his 
faculties. He has never changed his spirit and his approach to 
life. He was always the clown of the party, the guy that you 
just love to be around. That has always been there.
    Physically, after Ron received the kidney--and this is the 
amazing thing about it--immediately after the surgery, I mean 
the day after surgery, his eyes were more clear, his vision was 
better, his face, although ashen at the time before surgery, 
all of the sudden his color came to life. It was like if you 
didn't see him from the waist down, you would not know that Ron 
had any problems or side effects from his chronic kidney 
disease and type II diabetes. That is one thing that gives me 
joy as a donor is to see him, see how he looks. Every day that 
I see him is a good feeling for me that I feel that, if nothing 
else, I did all I could for my friend and he is much better off 
because of it.
    Mr. Clay. And you and your friend have started a new 
foundation. Tell me what you expect to accomplish with the 
Everson Walls, Ron Springs Gift for Life Foundation.
    Mr. Walls. Well, what we intend to do with this foundation 
is, first of all, make sure that no one has to go through what 
Ron Springs went through. Give them a support base, give them 
awareness of how you can be affected by chronic kidney disease 
and type II diabetes, and also, for those that have a trust 
factor when it comes to going to the doctors and getting 
tested, to make sure that we go into those under-served 
neighborhoods and give them their own test.
    We want to also bring in former NFL players, as well, and 
get the support from not only the NFL players but from the NFL 
and the NFL Players Association and give them a helping hand in 
bringing some of our fallen soldiers, so to speak, who are 
really ailing out there and have too much pride, really, to 
come to the doctor and be tested to see what kind of shape 
their kidneys are in.
    So along with helping out the retired players and all of 
those in the under-served communities, we want to make sure 
that the awareness is there for the entire community so they 
can realize that, before it is too late, they need to come in 
and get tested, because we don't want anyone to have to go 
through the dialysis process that Mr. Springs went through.
    Mr. Clay. I thank you for that. You can be assured that the 
Congressional Donor Caucus will be a partner with your and Mr. 
Springs' efforts.
    We also thank you for your testimony today. I believe that, 
Mr. Walls, you exemplify a new meaning of friend by what you 
did, that act of courage that you demonstrated by giving a 
piece of you to Mr. Springs in order to give him life. I am 
grateful for it. I am grateful that you brought this to the 
attention of this Nation because you are so high profile, and I 
certainly appreciate your being here today. Thank you.
    Let me say that this will conclude the testimony for panel 
one. Again, we thank you, Mr. Walls, for your testimony. You 
may be excused.
    At this time the subcommittee will recess and reconvene 
after the votes. I think it will be within about a half hour to 
40 minutes.
    Thank you so very much.
    [Recess.]
    Mr. Clay. The subcommittee will reconvene.
    We will now take the second panel.
    It is the policy of the subcommittee to swear in all 
witnesses. May I ask you all to rise and raise your right 
hands.
    [Witnesses sworn.]
    Mr. Clay. Let the record show that each has answered in the 
affirmative.
    We will begin the testimony of the second panel, but before 
we do that I would like to invite my friend and colleague from 
Massachusetts, Mr. Lynch, to make an opening statement.
    Mr. Lynch.
    Mr. Lynch. Thank you, Mr. Chairman. I appreciate your good 
work on this matter. It is no secret that the whole organ 
donation profession and effort has benefited my family. My 
brother-in-law is a live liver donor recipient, and he is doing 
quite well after a very serious operation back 6 years ago. He 
is doing great. You wouldn't know that he went through that, 
raising three young children with my sister, and he is doing 
fine.
    But I am aware of the pressures and anxieties that affect 
families who are in this position. I have become very familiar 
with the whole process and the waiting list and the pain and 
suffering that a lot of families go through who have family 
members who do not get a transplant in time and those who are 
currently waiting.
    So I think that there is a gap between what legislatively 
we can do to help and what science allows us to do. I believe 
that there is an education process that needs to go forward in 
this country. I think we have to redouble our efforts to help 
those families that are in need of transplants. I think that we 
can do much to expedite this process through our laws and 
regulations, and I think that the American people deserve 
better than what we are giving them right now, given the 
miracles of science that are allowing these donations to occur.
    The technology, the medicines, the anti-rejection medicines 
that are now available that make this all possible are going 
forward in leaps and bounds, and I don't think that our 
legislation and our regulatory framework allows us to reap the 
fullest benefit of the wonderful science that is being done in 
this country and around the world. I am well aware that some of 
the greatest gains in the early years of live organ donation 
came from overseas, and so we can benefit from those efforts 
and we can help them along, as well.
    But the bottom line, Mr. Chairman, I am just very happy 
that you are focusing on this. I know there are thousands and 
thousands and thousands of families that wish for your success 
in marshalling our efforts in this regard and strengthening our 
organ donor program.
    With that, I yield back.
    Mr. Clay. Thank you so much, Mr. Lynch.
    Let me also say I am thankful for you coming forward today 
and being a part of this hearing, as well as the other two 
Members who are not members of this committee but came forward 
because of their keen interest in this issue of organ and 
tissue donation. I appreciate your being here today.
    Mr. Lynch. Thank you, Mr. Chairman.
    Mr. Clay. On our second panel we have a distinguished group 
of individuals who are highly qualified to address issues 
associated with organ donation from a variety of important 
perspectives, and also included on this second panel is a 
witness that was supposed to be part of the first panel, but 
let me welcome Ms. Elizabeth Rubin.
    Thank you for being here. I understand you had a little 
difficulty, but we are glad you made it anyway.
    She is a former president and current board member of the 
Transplant Recipients International Organization [TRIO]. Ms. 
Rubin was diagnosed with liver disease nearly 15 years ago 
following the birth of her second child, but was fortunate 
enough to receive a liver transplant at the University of 
Pittsburgh Medical Center soon after. Since then, Ms. Rubin has 
dedicated her time and energy to volunteering for several non-
profits involving her two passions, music and organ donor 
awareness. What a mixture.
    Through her work with TRIO, she has become a highly 
distinguished public representative in the areas of donor 
awareness, education, support, and advocacy. In addition to 
TRIO, she also serves on the Speaker's Bureau of her local 
organ procurement organization and serves as president of a 
community music school in Media, PA.
    Ms. Rubin resides in the greater Philadelphia area with her 
husband, Bruce, and their two daughters, Isabel and Beatrice.
    Thank you for being here.
    Also we have Dr. James Burdick, who serves as Director of 
the Division of Transplantation at the Health Resources and 
Services Administration of HHS. Prior to his appointment, Dr. 
Burdick was a professor of surgery at Johns Hopkins School of 
Medicine, as well as a past president of the United Network for 
Organ Sharing [UNOS].
    Thank you for being here, Doctor.
    We also have Dr. Timothy L. Pruett, who is director of 
Transplantation at the University of Virginia Health System in 
Charlottesville and also serves as president of the Organ 
Procurement and Transplantation Network and the United Network 
for Organ Sharing. He previously chaired the open UNOS 
Membership and Professional Standards Committee as well as its 
Policy Compliance Subcommittee, and also served on its Ethics 
and Pediatric Transplantation Committees.
    We appreciate your time here today.
    Ms. Sue Dunn is the president-elect of the Association of 
Organ Procurement Organizations, as well as president and CEO 
of Donor Alliance, a federally designated organ procurement 
organization based in Denver, CO. Ms. Dunn serves on a variety 
of United Network for Organ Sharing committees, and continues 
to represent the donation community through her participation 
with the Association of Organ Procurement Organizations and the 
Donor Awareness Council.
    We are so glad to see you today.
    Dr. Clive O. Callender is the founder of the National 
Minority Organ Tissue Transplant Education Program [MOTTEP], 
which is dedicated to increasing minority donation rates 
nationally. MOTTEP is the first national organization to 
identify a twofold solution to the No. 1 problem in 
transplantation, the shortage of donors. The solution includes 
decreasing the number of persons being added to the national 
waiting list through a health promotion disease prevention 
campaign, while simultaneously increasing the number of 
minority donors.
    Dr. Callender serves as the chairman of the Department of 
Surgery at the Howard University Hospital and as a professor at 
the Howard University College of Medicine. He is a graduate of 
BW Hunter College and Mahari Medical College.
    Welcome, Doctor. I am so glad to get the opportunity to 
meet you.
    Dr. Jeffrey Crippin is the medical director of the Liver 
Transplant Program at Barnes Jewish Hospital and a professor of 
Medicine at the Washington University School of Medicine in St. 
Louis, which both facilities I represent proudly. He is a 
graduate of the University of Notre Dame and the University of 
Kansas School of Medicine and is the immediate past president 
of the American Society of Transplantation.
    I want to welcome you all to today's hearing.
    I will just ask each witness to be aware that you will have 
a 5-minute clock. Would you please try to observe it in your 
opening statements.
    We will start here with Dr. Burdick. You may proceed.

   STATEMENTS OF JAMES BURDICK, M.D., DIRECTOR, DIVISION OF 
TRANSPLANTATION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES; 
   TIMOTHY PRUETT, M.D., PRESIDENT, UNITED NETWORK FOR ORGAN 
  SHARING; SUSAN DUNN, PRESIDENT-ELECT, ASSOCIATION OF ORGAN 
 PROCUREMENT ORGANIZATIONS; CLIVE O. CALLENDER, M.D., FOUNDER, 
MINORITY ORGAN TISSUE TRANSPLANT EDUCATION PROGRAM; JEFFREY S. 
      CRIPPIN, M.D., PAST PRESIDENT, AMERICAN SOCIETY OF 
           TRANSPLANTATION; AND ELIZABETH M.P. RUBIN

                STATEMENT OF JAMES BURDICK, M.D.

    Dr. Burdick. Thank you very much. Good afternoon, Chairman 
Clay, Mr. Lynch. Thank you for the opportunity to meet with you 
today on behalf of the Health Resources and Services 
Administration [HRSA], to discuss the roles and 
responsibilities of the Division of Transplantation in 
strengthening our Nation's organ donor programs and awareness 
activities.
    I appreciate your continuing support of the organ donation 
and transplantation programs and your organization of this very 
heartwarming and wonderful hearing.
    The need for organ transplants continues to grow, and this 
demand continues to outpace the supply of transplantable 
organs. Nineteen people in this country will die every day 
because a life-saving organ does not become available to them. 
During the past decade, the number of deceased donors increased 
between 2 to 3 percent annually, while the annual growth rate 
in the number of individuals waiting for an organ transplant 
increased by approximately 8 percent. Even with the recent 
unprecedented 10.8 percent increase in the number of deceased 
donors in 2004, followed by a 6.2 percent increase in 2005 
related to the Donation Breakthrough Collaboratives, there 
still were about 97,000 individuals waiting for an organ 
transplant at the end of 2006, as you recognized, Chairman 
Clay, in your initial remarks.
    HRSA is responsible for administering a number of organ 
donation and transplantation programs. The National Organ 
Transplant Act [NOTA], Public Law 98-507, as amended, 
authorized the creation and operation of the Organ Procurement 
Transplant Network, the operation of the Scientific Registry of 
Transplant Recipients, and grants and contracts to conduct 
projects designed to increase the number of organ donations.
    Additional program authorities were provided by the Organ 
Donation and Recovery Improvement Act [ODRIA], some called the 
Frist bill, Public Law 108-216, which amended NOTA to help 
increase the number of organ donors and number of organs made 
available for transplantation.
    The key additional authorities under ODRIA include grants 
to States to support organ donation awareness; grants and 
contracts to support public education and outreach activities 
designed to increase the number of organ donors, including 
living donors; grants to qualified organ procurement 
organizations and hospitals to establish programs to increase 
the rate of organ donation; the expansion of grantmaking 
authority, to include public institutions; the development and 
dissemination of educational materials to inform health care 
professionals and other appropriate professionals about organ, 
tissue, and eye donation; financial assistance to living donors 
to help defray travel and other incidental, non-medical 
expenses; and mechanisms to evaluate the long-term effects of 
living organ donation.
    In 2006 a total of 28,923 organ transplant operations were 
performed nationwide, and that was up from 28,112 the year 
before, a little under 2,000 [sic] more. From these operations 
in the year 2006, 31,184 organs were transplanted. Of that 
number, about 78 percent were deceased donors, 22 percent 
living donors.
    At HRSA, one of the ways we are keeping donation efforts on 
the fast track is through our highly successful Organ Donation 
Breakthrough Collaborative. The Collaborative brings together 
donation professionals and hospital leaders to identify and 
share best practices to maximize organ donation in their 
facilities. The goal is to raise the number to 75 percent of 
eligible donors actually becoming donors. The results are most 
impressive. Since 2003, the number of hospitals that have 
achieved the 75 percent goal has increased from 55 to 301. The 
national average of donation has risen by 10 percent across the 
board, and we have over 20 percent more actual transplants.
    This year HHS joined with private companies and 
organizations across America in encouraging their employees to 
Give Five, Save Lives. The Give Five, Save Lives challenge 
asked employees to support donation by taking 5 minutes out of 
their work day to enroll in a State organ donor registry or 
sign a donor card.
    In February, HRSA announced the results of a 2005 Gallup 
Organization survey which indicates that Americans continue to 
strongly support the donation of organs and tissues for 
transplantation. More important, the survey also found that 52 
percent of Americans have taken personal actions to become 
organ donors, up from about 28 percent in a similar survey done 
in 1993.
    Despite these advances, HRSA is humbled by the fact that 
people are still dying because of the lack of available organs. 
In our vigilance, HRSA sustains support for other donation 
programs. The OPTN, which HRSA manages, continues to improve 
the efficiency of the organ transplantation system by improving 
organ allocation policies and monitoring policy compliance by 
transplant programs and OPOs. Grants were awarded to OPOs and 
hospitals to establish programs coordinating organ donation 
activities.
    In our outreach efforts, HRSA maintains support for public 
and professional education programs. Working together, we are 
making great strides, but we still have a long way to go.
    We recently celebrated 50 years since the first successful 
organ transplant, which was done in Massachusetts, and we have 
come a long way; however, while nearly 29,000 individuals 
received life-saving transplants in 2006, the need to increase 
the number of successful transplants remains critical.
    There are close to 97,000 patients on the national waiting 
list, and 19 will die every day because a life-saving organ 
does not become available to them. Working together, we can 
change these numbers. HRSA is proud of its leadership role in 
this most worthwhile effort, and there are clear signs we are 
moving in the right direction, but we must do everything we can 
to keep the momentum going.
    So, finally, thank you. Thank you for giving me the 
opportunity to come here today on behalf of all of those 
waiting for a transplant to discuss the organ donation and 
transplantation and for your dedication and interest to these 
vital programs.
    Eventually I would be happy to answer any questions.
    [The prepared statement of Dr. Burdick follows:]

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    Mr. Clay. Thank you so much, Doctor.
    Dr. Pruett, you may proceed.

               STATEMENT OF TIMOTHY PRUETT, M.D.

    Dr. Pruett. Mr. Chairman, Mr. Lynch, I appreciate the 
opportunity to come and speak to you today. I would also like 
to applaud the Congressional Organ Donor and Tissue Caucus for 
what it has done and what it will do in the future, and would 
also like to applaud you for the Everson Walls and Ron Springs 
Organ Donation Support Act of 2007. It speaks legions to what 
we can do for our citizens.
    My name is Timothy Pruett. I am the Strickler Family 
Professor of Transplantation and Surgery at the University of 
Virginia and the current president of the Organ Procurement and 
Transplantation Network and the United Network for Organ 
Sharing. For all that mouthful, the UNOS is a non-profit 
organization which operates the OPTM contract with HRSA, but it 
is not my intent today to speak as an official representative 
of the transplant community; rather, I would like to speak for 
the patients and families that I have seen as an individual 
providing transplant care for the past 20 years.
    For the most part, people of all ages with end-stage 
kidney, liver, heart, and lung problems will live longer and 
better with an organ transplant than with other forms of 
medical support. Unfortunately, the numbers of people waiting 
for the organs greatly outstrips organ availability from 
deceased individuals, and because of increased waiting time the 
continuing gap between the numbers of people waiting and organs 
available, the number of Americans like Mr. Walls earlier 
described today step forward every year to donate an organ to 
another person. And although many types of organs can be 
transplanted with live organs, this amazing act of generosity 
is most frequent with those that need and receive kidney 
transplants.
    From a systems perspective, a kidney from a live donor is 
best. It lasts longer in the recipient. It is an easier 
operation to plan for the recipient and the medical center. It 
functions more quickly and reliably than one from a deceased 
donor. In short, if you needed a kidney, you would want to 
receive one from someone that is alive and not dead.
    The first kidney transplant that was performed came from a 
live donor, as Dr. Burdick said. In 2006 over 30 percent of the 
kidneys transplanted in the United States came from live organ 
donors. It is a form of organ donation that our people have 
embraced for more than 50 years.
    The executive and legislative branches of the Government 
have recently weighed in regarding the value of live organ 
donation. Because there are so many instances where Americans 
are willing to donate but biology gets in the way, a variety of 
pair donation have been proposed to increase in this type of 
donation.
    Congress has recently addressed the issue through 
legislation, is on the verge of passing H.R. 710, the bill 
named for former Representative Charlie Norwood. That bill 
officially provides what the Department of Justice has recently 
approved in memo form, that pair donation between live donors 
and recipients does not constitute valuable consideration, is 
therefore legal under Section 301 of NOTA.
    In 2006 a directive was published in the Federal Register 
instructing the OPM to develop policies regarding living organ 
donors, living organ recipients, including policies for 
equitable allocation of living donor organs, in accordance with 
section 121.8 of the final rule.
    It is clear that the value of living organ donation and 
transplantation is an activity to be encouraged from the 
perspective of those who need to receive organs, the medical 
community, those that reimburse organ transplantation, and the 
Government and oversight community.
    The live donor does an extraordinary act, lying down on an 
operating room table, giving a piece of himself or herself for 
another person, placing one's health and safety in the hands of 
doctors and nurses when there is no direct medical benefit for 
that person. Our society and Treasury gets a great deal of 
benefit from this form of generosity. Unfortunately, the pain 
of recovery from the procedure of removing a kidney or any 
other organ is often not the only kind of pain that the donor 
suffers. Financial pain is also very common.
    Significant financial disincentive to be an organ donor 
exists in the United States. This comes in many forms: lost 
wages of the donor and the family support members, temporary 
change in the ability to perform one's job during the recovery 
period, travel costs incurred during the evaluation to be a 
donor, potential ability to obtain and collect insurance 
benefits as a consequence of the donation process.
    Parenthetically, Mr. Walls asked me to speak on this 
because he had difficulty obtaining life insurance after he was 
a donor for several months prior to convincing them that he 
would be able to live a long life.
    We have no safety net for those who want to donate organs. 
Unfortunately, the kidney donation is relatively safe, with a 
very low risk of death or minimal long-term morbidity, but 
there are multiple reports in the transplant and lay 
literature, and even more personal anecdotes of significant 
financial hardship associated with the live organ process which 
have been communicated to us. This is particularly true for 
those individuals with personal incomes at the lower end of our 
financial earnings spectrum.
    Although the costs of the medical workup are covered by the 
recipient's payer, for the person without means the personal 
savings, family, or employee's ability to help defray the 
additional expenses just do not exist.
    As a society, we gain much in the quality of life from 
recipients and financial benefits of the acts of generosity 
that occur daily through organ donation.
    I recently gave a talk entitled, The Ethical Aspects of 
Live Organ Donation, and during the discussion at this 
international meeting there was unanimous agreement that live 
organ donation was not cost neutral for any donor in any 
country. Not only did the donation cost the organ, or the part 
thereof, but it usually costs sums of moneys in lost wages and 
out-of-pocket expenses.
    In this forum, the international community felt that we 
should be able to do better. In fact, if we can create a model 
that minimizes the personal cost to the live organ donor and 
its family, we are likely to see more donors from people at the 
lower end of the financial spectrum step forward to donate for 
the benefit of their loved ones.
    An important point of the goal is that the projected cost 
of making organ donation cost neutral would not be more than 
the savings to the system, as it costs more to keep someone on 
dialysis than to transplant them.
    The major areas to be addressed should include health 
insurance, automatic Medicare eligible or some such variant in 
the event that the organ donor develops a medical condition 
requiring treatment, short-term disability and life insurance 
for those people who are either unable to return to work or 
have significant catastrophic events, reimbursement for out-of-
pocket expenses, and a variety of methods are available to 
accomplish this means.
    Mr. Clay. Doctor, may I ask you to summarize, please?
    Dr. Pruett. Yes.
    The financial benefits of our society are real, and we need 
to continue to develop new methods and systems that increase 
the numbers of organs from deceased donors. Simply to look at 
the live organ donation system, we penalize the patient who 
wants to donate an organ. We can do better.
    Thank you.
    [The prepared statement of Dr. Pruett follows:]

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    Mr. Clay. Thank you so much.
    Let me now recognize Ms. Dunn. You may proceed with your 
testimony, please.

                    STATEMENT OF SUSAN DUNN

    Ms. Dunn. Thank you, Chairman Clay, Mr. Lynch. My name is 
Sue Dunn, and I am president-elect of the Association of Organ 
Procurement Organizations [AOPO]. I am also president and CEO 
of Donor Alliance, the non-profit, federally designated organ 
procurement organization [OPO], that serves Colorado and most 
of Wyoming.
    It is my privilege to offer you my perspective today as a 
donation professional, one of thousands across the country who 
honor the decisions of deceased individuals and families to 
save lives as organ and tissue donors.
    OPOs are responsible for the identification and care of 
organ donors and their families, organ recovery and 
preservation, transportation, and data collection regarding 
deceased organ donors. OPO's staff work with donor families and 
educate medical staff and the general public about organ 
donation. The priority of OPOs has always been to respect 
donors' wishes and to provide support to donor families during 
the most difficult time of their lives.
    Since starting my career as a donor coordinator over 23 
years ago, I have been continually inspired by the capacity of 
individuals and families to give the gift of life. Thanks to 
these organ donors and the partnership of Federal and State 
government, OPOs, the Nation's largest hospitals and transplant 
programs, Colorado, Wyoming, and the rest of the Nation have 
seen unprecedented gains in saving lives through 
transplantation.
    In the donation service area that I am responsible for of 
Colorado and Wyoming, the number of deceased organ donors 
increased by 40 percent from 2003 to 2006, and this also marked 
with a 25 percent increase nationwide.
    Given that only 1 percent of all hospital deaths occur 
under circumstances that medically allow for organ donation, 
every single donation opportunity is crucial. Several factors 
have helped Colorado, Wyoming, and the rest of the Nation 
convert more opportunities into gifts of life than ever before.
    First, we made the responsibility for every organ donation 
opportunity a shared one, with Government, donor hospitals, 
OPOs, transplant centers, medical examiners, and all others 
equally being accountable for success. In Colorado and Wyoming, 
hospitals took ownership of their critical role in the process 
by working collaboratively with us in adopting nationally 
recognized best practices.
    Second, our focus on data-driven performance measures has 
helped all parties involved focus on every donor and every 
organ every single time. When the Organ Donation and 
Transplantation Breakthrough Collaborative set goals of 75 
percent conversion rate and 3.75 organs transplanted per donor, 
I have to say we were all in disbelief. The bar was set very 
high. But no more.
    I want to share with you our experience at Donor Alliance. 
Over the past 2 years, our conversion rates have consistently 
been at 80 percent. That means 8 out of every 10 eligible 
donor's organs are transplanted. Many factors have contributed 
to this success: an early referral system, trained family 
support coordinators, an effective donor registry, an 
organizational focus of placing all organs in active local 
transplant programs.
    The organs transplanted per donor metric has proven a bit 
more of a challenge. In certain demographic groups we are 
placing 4.0 organs per donor; however, our overall average is 
only 3.3. The demographic mix, the nature of injuries, and the 
overall health of the donor does impact organ placement. 
Rigorous post-donor reviews are conducted with our staff and 
our medical director to see how we can improve those practices 
after every case.
    Third, OPOs have benefited from the active involvement of 
hospital leadership. By developing relationships with senior 
leadership at large donor hospitals, hospital systems, and the 
State hospital associations, donation becomes an institution-
wide effort, not simply the responsibility of critical care 
nurses or physicians. Most hospitals now include some sort of 
measure of donation on their organizational dashboards that are 
circulated to the executive team, as well as their boards of 
directors.
    With this momentum and extraordinary results, the OPO 
community has worked to sustain and expand the efforts of the 
Joint Commission accreditation standards, implementing the 
Centers for Medicare and Medicaid services conditions of 
participation for OPOs, spreading the Collaborative, and 
championing the revised Uniform Anatomical Gift Act. The UAGA, 
which, as of September 21st, had been adopted by 20 States and 
had legislation pending in others, the UAGA represents a 
significant, far-reaching effect, and it is important to note 
that it only relates to deceased donors.
    In general, the UAGA incorporates a number of important 
features. Most importantly for this discussion today is the 
creation of State donor registries, which allow individuals to 
enroll in State-authorized computer donor registries. Most of 
these are managed under the Department of Motor Vehicles.
    Donor registries have several key benefits. First, by 
recording one's wishes in a searchable data base, it makes sure 
that the donor's wish is honored. Second, we also know that 
obtaining consent at the very front end of the case allows us 
to move to organ placement in a much quicker fashion.
    In Colorado and Wyoming, along with other parts of the 
United States, more than 40 percent of our organ donors are off 
of the registry, and 50 percent of our tissue donors.
    To sum up, Colorado and Wyoming and the rest of the Nation 
have benefited from the concerted efforts of the past several 
years. As you know, an increase in donor organs not only saves 
lives, but also saves the Federal Government millions of 
dollars in dialysis and other health care costs.
    Thank you for helping us sustain and build our mission to 
honor donors' wishes, support donor families, and save lives.
    [The prepared statement of Ms. Dunn follows:]

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    Mr. Clay. Thank you so much, Ms. Dunn, for your testimony.
    Now we will go to Dr. Callender. Please proceed.

             STATEMENT OF CLIVE O. CALLENDER, M.D.

    Dr. Callender. I am Dr. Clive Callender, transplant surgeon 
at Howard University Hospital, and the founder and principal 
investigator of MOTTEP.
    MOTTEP is addressing the No. 1 problem in transplantation 
today, the shortage of organ donors. Because of this shortage, 
nearly 20 people die every day, and taxpayers spend $40,000 per 
patient per year for kidney dialysis treatments. The MOTTEP 
program provides organs, which saves lives and over time 
decreases health care expenditures on dialysis by $235 million 
for kidneys, alone.
    Since 1982, 25 years ago, we have participated in the 
growth and development of a national donor education program 
which relies on a grassroots strategy that emphasizes community 
education and empowerment, requiring the community to be an 
efficient and economically appropriate change agent.
    The methodology we use provides compelling evidence of the 
efficiency of a community-based, grassroots approach, 
delivering a two-pronged message aimed at increasing donation 
rates and promoting the adoption of healthy lifestyle behaviors 
and practices.
    The key for its success is utilizing a methodology that 
emphasizes the use of culturally sensitive and ethnically 
similar community individuals who are transplant recipients, 
donors, and their family members as messengers.
    When we started this effort in the African American 
community in 1982, it was stated to me that Blacks don't and 
won't donate organs. Ten years later, our success in the 
African American community resulted in the conceptualization of 
MOTTEP and expanded our effort into all minority populations. 
Ten years after this, as table one demonstrates, minorities now 
donate in proportion to their population distribution.
    When we look at our second table, the Scientific Transplant 
Registry has data that demonstrates that when MOTTEP sites are 
involved, when compared and contrasted with non-MOTTEP sites, 
we have significantly improved donation rates when compared to 
regions in which there were no MOTTEP sites.
    Our final table shows that the number of donors, the organ 
donors per million, and donation percentages have statistically 
increased in all minority groups. In fact, while minorities 
represent 25 percent of the American population, the number of 
minority donation percentages has increased over that 10 year 
period from 15 percent to 30 percent.
    Since 50 percent of all kidney transplants' survival ranges 
from 5.3 to 12.2 years, and most more than 9 years, it is clear 
that the financial benefit to the Government supporting a 
national donor education program such as we talk about would 
save millions of dollars. We break it down. Since dialysis 
costs in excess of $40,000 per patient per year, much of which 
are taxpayers' dollars, and transplants break even after 3 
years, this would provide an average savings of at least 
$30,000 per year for each year the organ survives over 3 years. 
Assuming an organ survival rate of 6 years, each donor organ 
would save at least $135,000 per donor.
    Assuming a kidney transplant's cost after 3 years would be 
$10,000, looking at the graphics that we just talked about, it 
is clear that the cost/benefit ratio is one that is a worthy 
investment when we consider the benefits greatly outweigh the 
under-funded support that is provided to national donor 
education programs.
    Now, these data are based upon the current census that 
identifies 25 percent of the American population as minorities. 
The MOTTEP goal is by 2010 to have 35 percent of the donors 
being minorities and to have African Americans and Latinos to 
increase from 41 organ donors per million to 50 organ donors 
per million. Should this occur, we would recover 1,750 minority 
donor organs and save the Government $236 million.
    While MOTTEP has received a total of $16 million from the 
Federal Government between 1992 and now, none of these dollars 
have been allocated for organ donation after 2007. This would 
mean this unique program, which has made a national 
contribution to the donor shortage, would cease to exist after 
mid-year 2008. Currently, MOTTEP exists at 11 sites, only 5 of 
which are partially funded. To optimize this unique community 
grassroots education program, funding for 15 to 25 sites would 
require $3 million to $5 million per year for an additional 5 
years, a small amount when compared to the $236 million saved 
from kidney transplants, alone, and the more than $1 billion 
saved when kidneys, livers, hearts, and other organs are 
combined.
    [The prepared statement of Dr. Callender follows:]

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    Mr. Clay. Thank you so much for that testimony, Doctor.
    Now we will go to Dr. Crippin. You may proceed.

             STATEMENT OF JEFFREY S. CRIPPIN, M.D.

    Dr. Crippin. Good afternoon, Chairman Clay, Mr. Lynch. On 
behalf of the American Society of Transplantation, representing 
the majority of our Nation's professionals engaged in solid 
organ transplantation, we applaud your leadership for convening 
this forum today to focus on organ donation and our Nation's 
ability to deliver the gift of life to the thousands of 
patients currently awaiting a life-saving donor organ.
    Again, my name is Dr. Jeff Crippin, and I am the immediate 
past president of the American Society of Transplantation and 
the medical director of the liver transplant program at Barnes 
Jewish Hospital in St. Louis.
    I would like to focus very briefly on the efforts of our 
society on a national level, as well as two efforts that we 
focus on back home in St. Louis.
    The American Society of Transplantation knows the education 
and awareness of patients and physicians, alike, is crucial to 
the delivery of effective health care. The Society has 
developed several educational programs to provide updated 
information on issues regarding organ failure and its 
complications, the transplant evaluation, and the transplant 
procedure, itself. We have also crafted a program devoted to 
the care and maintenance of the transplant after it has 
occurred.
    Through these efforts, the AST strives to minimize and 
eliminate any questions or confusion that may arise as a 
patient is considering this life-saving surgery, before and 
after the transplant.
    In our own institution in Missouri at Barnes Jewish 
Hospital in Washington University School of Medicine, Dr. Amy 
Waterman, a social psychologist and assistant professor of 
medicine in the Division of General Medical Sciences, is 
conducting ground-breaking work examining increased patient 
awareness regarding kidney transplantation. Dr. Waterman is 
currently developing living kidney donation materials focusing 
on racial differences and attitudes about diabetes and organ 
donations. Part of her work is actually funded by the Health 
Resources and Services Administration through a grant looking 
at educating patients at kidney dialysis centers about the 
availability of kidney transplantation.
    The data obtained by Dr. Waterman and her colleagues will 
hopefully lay the groundwork for similar programs across 
America as we continue to fight the battle against mis-
information and the lack of information regarding this life-
saving therapy.
    In an effort to reach patients in areas that remain under-
served in our State and areas not necessarily knowledgeable 
about transplantation, I have spent the last 4\1/2\ years 
conducting the patient outreach clinic in rural areas, and 
particularly in southeast Missouri.
    The city of Cape Gerardo is a town of approximately 35,000, 
as you know, about 120 miles southeast of the St. Louis area. 
As I have found, for various reasons, many of the town's 
citizens do not like to leave or travel to large urban settings 
and often refuse a referral to the big city, in spite of a 
defined need. My presence has allowed these patients and their 
physicians to see the need for solid organ transplantation and 
simplified their need.
    Finally, in 1999 the American Society of Transplantation 
and other transplant organizations worked closely with Congress 
to pass and enact legislation providing up to 6 weeks of paid 
leave for Federal employees seeking to donate a life-saving 
donor organ. Congressman Elijah Cummings of Maryland 
spearheaded this initiative in the House of Representatives.
    In addition to these Federal laws, the American Society of 
Transplantation has initiated its own private campaign entitled 
the AST Employee Leave and Donation Program. The purpose of 
this campaign is for our transplant physician members to reach 
out to corporate America and encourage them to amend their 
employee leave policies to allow adequate time for employees to 
serve as a living donor. This has resulted in many companies 
changing their rules and removing a financial disincentive to 
donation.
    Mr. Chairman and members of the subcommittee, the American 
Society of Transplantation thanks you for the opportunity to 
participate in today's forum. We applaud and commend your 
leadership and efforts on this important issue. Of note, the 
American Society of Transplantation endorsed H.R. 3635 last 
evening. We look forward to your efforts in getting the bill 
passed.
    The gift of life, though often surrounded by tragic 
circumstances, can prolong the lives of affected Americans, 
allowing them to maintain their roles as active and productive 
citizens of our great Nation.
    Thank you.
    [The prepared statement of Dr. Crippin follows:]

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    Mr. Clay. I thank you very much, Dr. Crippin. Thank you for 
the endorsement of the legislation.
    Ms. Rubin, you will be the final witness of this panel, and 
then we will get to the question period. Please proceed.

               STATEMENT OF ELIZABETH M.P. RUBIN

    Ms. Rubin. Good afternoon. Thank you very much for allowing 
me to speak today. My name is Elizabeth Rubin, and I am here to 
represent transplant recipients and patient advocacy groups.
    As Chairman Clay already reported, I had a liver transplant 
15 years ago. At the time, I had a very young family--a 4 year 
old daughter and a newborn. I took my good health for granted, 
and when I suddenly learned that my liver was not functioning 
properly I did not take it seriously. I chose to ignore the 
symptoms of lethargy and nausea to continue with my daily 
activities. After my gastroenterologist had done all the 
testing he could, coming up with no clear diagnosis, the test 
for hepatitis and other known liver diseases came back 
negative. He called my husband and told him, ``You need to get 
her to a hospital that can handle this, like the University of 
Pittsburgh, immediately.''
    So we did, complete with little children in tow, much to 
the chagrin of my in-laws, and within 5 days I was listed for a 
liver transplant, entering into that cavern of the unknown, 
because in those days there wasn't much published information 
on what to expect while waiting for or going through a 
transplant.
    This was the picture that sold my story, the one the 
doctors used to argue MetLife Benefit to get me on the 
transplant waiting list. I spent close to 5 months in 
Pittsburgh for them in and out of the hospital under the 
watchful eyes of Dr. Starsal and his protegee John Fung, and 
spent the remainder of the time trying to get my body to accept 
the foreign organ.
    The diagnosis that I was finally given for my liver failure 
was Cryptogenic Cirrhosis, which had no cause and therefore 
should not repeat itself in my system.
    There were some complications along the way, and it was not 
until my 4th year post-transplant that things started to level 
off and I could finally return to my life, my new, normal life.
    Talk about a lesson in mortality.
    The increase in the number of patients on the transplant 
waiting list is both a positive and negative sign of what has 
occurred in the transplant world--positive because improvements 
in medical technology have made it possible for more patients 
to be listed for transplant, but negative because the number of 
donors has not increased at the same pace as the number of 
candidates.
    It is imperative that we come up with recommendations on 
how to increase the number of donors to regulate this country's 
organ and tissue donor system so that no transplant candidate 
will be turned away, forced to die rather than to celebrate a 
second chance at life, as I have been so fortunate to be able 
to do.
    In preparing my testimony today, I consulted with several 
of my transplant friends to get their input. As a member of the 
Board of TRIO, serving in many positions, including President 
of the Board, as well as a transplant recipient, myself, I feel 
as though I represent the heart of the transplant community. 
TRIO's mission is to improve the quality of lives touched by 
the miracle of transplantation through support, advocacy, 
education, and awareness. As a non-profit, international 
organization, TRIO has been in existence for over 20 years. 
Many of our members are transplant recipients. We are proof 
that transplantation works.
    You can read more about what TRIO has done to improve the 
awareness of the need for donors in my full testimony.
    The efforts of TRIO members and other patient advocacy 
groups over the past decade have improved the rate of donation, 
but not enough. There are five areas in which I recommend we 
concentrate our efforts in tackling the donor shortage.
    First of all, for anatomical donors, we should continue to 
expand the criteria for viable donation. Research should be 
continued to determine what other categories of potential 
donors may be acceptable. This may include the use of extended 
donors and cardiac death patients. I would also suggest that we 
support and promote stem cell research.
    Second, we need to push for a standardization of State 
registries in all States of this country. It has already been 
proven that the number of donors has increased in States where 
registries exist, but not all States have passed laws that 
favor donor registries. Perhaps in addition to drivers license 
centers, people should be given the option to sign up on line, 
as well. Nationwide practice of this and a national data base 
would allow OPOs throughout the country to access the donor 
list no matter where a potential donor was at the time he was 
declared brain dead.
    In addition, regulations need to be standardized and 
regulated across the United States with regard to the 
integration of organ donation responsibilities among hospital 
staff, OPOs, and State registries. The Organ Donation 
Breakthrough Collaborative has already proven that this will 
increase the percentage of organ donors, but this collaborative 
needs to be extended to all hospitals, OPOs, and State 
registries in the United States.
    Another recommendation is that we seriously examine the 
possibility of presumed consent as a law of the land. If an 
examination of the data available from countries using this 
approach indicates that this could be feasible in the United 
States, we could then enlist technology to allow for online 
opting out or allow people to go to State registry locations to 
physically opt out.
    If presumed consent is not deemed feasible, then we should 
dedicate some time and resources to finding acceptable methods 
of offering incentives to people who are considering signing up 
to be organ donors.
    My final recommendation for deceased donors at this time is 
that more effort and funding be put into educating the public 
on the need and reasonableness of organ donation. Organizations 
such as TRIO that are successful at doing this should be 
awarded grants to continue and expand their programs.
    Two areas where I can see expansion of donor awareness 
education are driver's education courses and Web sites on the 
Internet. Websites are an excellent example of technology's use 
to provide public access to a wealth of information and reports 
for patients and the general public.
    For living donors, I also have a few recommendations.
    Among the new programs aimed at increasing the use of 
living donors has been the establishment, as previously stated, 
by some OPTM members of directed donation programs. List and 
pair programs should be universally accepted at all transplant 
centers. Regulations need to be established and followed, thus 
removing the question of preferential treatment.
    Another suggestion for living donors is to offer each and 
every one of them health and life insurance policies and long-
term care and followup post donation. Even though transplant 
surgery has become less risky, living organ donation still 
requires one to go through unnecessary surgery, which may cause 
problems during or after surgery.
    I have one more recommendation which, although it may not 
directly impact the number of donors, does impact the longevity 
of the lives of transplant recipients. It is crucial that we 
push through the bill promoting lifetime immunosuppressive 
coverage that has been sitting in Congress for years.
    It is economically short-sighted to be pushing for 
improvements in the U.S. organ donor program if we do not 
concern ourselves with the fact that transplant recipients who 
cannot afford to pay for their transplant medications once 
their coverage runs out are dying. If they don't die, they may 
be fortunate to receive a second transplant, which is just 
stupid when there is already such a shortage of organs.
    In closing, I would like to thank this committee once again 
for holding this hearing to discuss the potential opportunities 
for strengthening and improving our Nation's organ donor 
programs. I am honored to have been invited, and I hope that 
some of my recommendations will be considered. I also hope that 
discussions such as these will continue so that those of us 
living in the world of transplantation can help to continually 
update and improve the procedures and regulations by which 
transplant candidates live or die.
    Finally, I hope that everyone in this room who is attending 
this hearing has signed up to be an organ donor and has passed 
this information on to all their family and friends and anyone 
else they know.
    Thank you very much.
    [The prepared statement of Ms. Rubin follows:]

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    Mr. Clay. Thank you so much, Ms. Rubin.
    Let me thank the entire panel for their expert testimony.
    Since you have had the last word as part of the panel, I am 
going to let you start off with the questioning. Ms. Rubin, I 
understand you moved to the Pittsburgh area temporarily in 
order to have your transplant done at the University of 
Pittsburgh Medical Center. I am wondering if you feel having to 
move, albeit temporarily, was a significant disruption to you 
and your family's quality of life? More specifically, do you 
feel there are enough transplant programs nationwide that are 
able to serve the population adequately?
    Ms. Rubin. Well, remember this was 15 years ago. If I were 
to need a transplant now, I think I probably would have stayed 
in Philadelphia, but at the time Pittsburgh was the best-known 
for treating unknown diseases that required transplant.
    It was inconvenient for us to move to Pittsburgh; however, 
my husband's company was very understanding and we did get a 
lot of help from family and friends and people we met out there 
as far as finding a place to live and care for our children, 
etc.
    Mr. Clay. You know, your testimony also brought out the 
fact of availability. I know a few years back I read about some 
programs in several States that offered prisoners the 
opportunity to be organ donors. What are your thoughts about 
prisoners being allowed to be organ donors?
    Ms. Rubin. Well, I actually am in favor of it, speaking 
personally. I don't know that other members of TRIO or other 
patient advocacy groups would agree, but I am in favor of it. 
If a prisoner wishes to donate, I think is a wonderful way for 
them to give back. I think that it will be a hard thing to sell 
to the general public, and I think it is going to be hard for 
some potential recipients, some candidates, to accept an organ 
from a prisoner, because there are people who believe that they 
adopt certain physical and mental characteristics from their 
donor.
    Mr. Clay. But you would have accepted the organ?
    Ms. Rubin. I would have accepted. I mean, we were getting 
to the point where Pittsburgh was doing research on pigs and we 
would have accepted that, too.
    Mr. Clay. I see. Well, thank you for that.
    The next question is for both Drs. Crippin and Callender. 
It relates to cost analysis, cost of keeping a patient on 
dialysis versus the transplantation surgery and the cost of 
that, who those costs weigh out at the end. Go ahead, Dr. 
Callender. You can start.
    Dr. Callender. OK. Well, this was an issue that I looked at 
because it was clear that dialysis costs about $40,000 per 
patient per year, and many may not realize that the only place 
in this country where we have universal health is actually in 
end-stage renal disease, because we have Medicare and we have 
Medicaid, so well over 90 percent of patients that have end-
stage renal disease actually have health coverage, so therefore 
we can get the data. The data does reflect that it costs about 
$40,000 per patient per year for dialysis, as contrasted with 
what you would pay for a transplant where you may have some 
cost in the first couple of years, but after the third year you 
are talking about break-even. That is why I made the comment.
    Since most transplants would survive, based upon our 
studies over the half life, most of them would survive for more 
than 6 years. We are talking about a savings for each increased 
donor that you get of maybe $135,000 per donor because of the 
fact that it is only about $10,000 a year for taking care of a 
patient for a transplant after the third year, which means that 
every time you have a donor you have a positive situation. When 
you take somebody off of the dialysis list and get them 
transplanted, you have effectively saved the taxpayers and the 
Government a significant amount of money.
    When we costed it out and looked at it, assuming that you 
saved $135,000 per organ and you then had that period of time, 
and if you are talking about just kidneys, alone, we figured it 
was about $236 million. But then if you looked at kidneys, if 
you looked at hearts, if you looked at deceased donors which 
could provide, for example, two kidneys, and a live donor one 
kidney, if you look at a deceased donor and you look at the 
heart, the liver, the pancreas, the small intestine, and you 
look at all of that, you can recognize that by transplantation 
and donation, when spending money for donation efforts, that 
you would save the taxpayers, the Government, millions of 
dollars just for kidneys, alone, and then billions of dollars 
if we talk about deceased donors who gave, let's say, the 3.5 
organs per donor that is the goal for the Breakthrough 
Collaborative.
    Mr. Clay. And not to sound awfully cold, hard stats, so to 
say, but our colleagues would want to know what are the costs 
and effects of a bill like ours.
    Dr. Crippin.
    Dr. Crippin. Mr. Chairman, I was going to give it a 
slightly different spin, and it gets back to Ms. Rubin's 
comments about immunosuppression running out after 36 months 
and patients covered under Medicare. There is a study by Mark 
Schnetzler, a health economist at St. Louis University, who 
found that, in patients who lost their kidney transplant, the 
cost of maintaining them on immunosuppression on average was 
just over $13,000 a year.
    But to lose that transplant and have to go back on 
dialysis, the cost of the first year back on dialysis was a 
staggering $130,000. So by maintaining immunosuppression, 
again, for the lifetime of the allograft, at least for kidney 
patients where you don't have to incur the dialysis expense, it 
is a huge savings to our country.
    Mr. Clay. And is it true that the insurance industry, and I 
guess our Government, has this 36 month time limit of coverage?
    Dr. Crippin. No, it is not. The private insurers don't 
operate that way. I mean, it is has been explained to me that 
when this program was started years ago there was only so much 
money the Government could expend toward the cost of 
immunosuppressive medications. There have been studies looking 
at what if we paid for those medicines for the lifetime. Of 
course, it works into the hundreds of billions of dollars.
    Dr. Callender. And when you talk about the Medicare 
payment, initially it was for 36 months, and after 36 months 
coverage would end. I have a number of patients who are now 
back on dialysis because they couldn't afford to pay anything 
after the 36 months. That is the time period at which we are 
breaking even, so it is a disastrous situation where you have a 
situation which they both talked about, where after a period of 
time there is no payment for immunosuppressive medication.
    Mr. Clay. And the policy ought to be changed.
    Dr. Callender. Yes.
    Mr. Clay. Thank you for that.
    Ms. Dunn, I would like to spend a little time on the areas 
of family notification procedures and presumed consent of 
donors. What are the procedures for tracking down next of kin 
in a situation where the potential donor did not indicate 
whether a gift was intended? And what role does the OPO 
community play in determining the accuracy and validity of a 
deceased donor's choice?
    Ms. Dunn. Thank you. That is an in-depth question 
certainly, with many parts to it.
    The process that is in place based on conditions and 
participation in the Medicare program is that all hospitals in 
the country are required to do death notifications when someone 
is near death or death has occurred, and those phone calls come 
in to the OPO. At that case, in the case of brain death the OPO 
physically sends someone to the hospital to make a 
determination on donor suitability from the chart, to huddle 
with the hospital team--the nurses and physicians--to determine 
that brain death has actually been declared or is imminent, and 
then at that point to talk with the family about their options 
for donation.
    If the person is on the registry, it is at that point that 
we search the registry to see if they are on it. If they are 
not on the registry, then a skilled team of professionals who 
have been trained in family interactions and bereavement care 
interact with the next of kin that has been identified by the 
hospital. Most of the time someone is at the hospital or they 
are reachable by phone. That conversation then takes place 
about that death has occurred, what the options are for 
donation, and how long the process will take.
    That is, in a nutshell, how the process goes. Does that 
answer the specifics to your question?
    Mr. Clay. It certainly does. I was just wondering what 
other steps could be taken to improve contact with family? I 
mean, sometimes it is probably perceived as pretty cold when 
your representative shows up.
    Ms. Dunn. You know, it is really a very fine line. You 
know, it is crucial that we have a good partnership with the 
hospital staff, the nurses and physicians, because they are the 
ones that have been with the family since the time of admission 
through the event that has led up to the point of brain death. 
If we don't have that relationship with them, it is difficult 
for us to have a meaningful conversation with the family about 
their options.
    The fine line that we walk is if we are there too early, 
quite frankly, the reputation that a lot of OPO colleagues have 
is that we are vultures when we are in the intensive care unit, 
and we don't want to create a conflict of interest by being 
there too prematurely, so it really is a fine line.
    I think the short answer is to continue to develop really 
strong relationships with hospital systems so that we are there 
appropriately talking with the care providers.
    Mr. Clay. And according to your testimony, you do a lot as 
far as looking for live donors, as well as getting people to 
declare, I guess, on the back of their driver's licenses?
    Ms. Dunn. Yes, with registry drives that really is. With 28 
States now having active registries that are registries of 
consent, all our efforts are to drive people to the registry.
    Mr. Clay. Thank you so much for that.
    Dr. Pruett, would you please explain for us how UNOS is 
funded by its members and the policymaking functions it derives 
through its OPTN charter? How much Federal funding does the 
OPTN receive annually?
    Dr. Pruett. Thank you. The majority of the UNOS budget and 
the OPTN budget comes through the registration fees of putting 
a person who is waiting for a transplantation on the waiting 
list. That constitutes the vast majority of the moneys of the 
$30 million budget that is required to run the allocation 
system in this country.
    The amount of money that is coming through Federal funding 
was capped in the initial NOTA authorization back in 1984 at $2 
million and has never exceeded that degree of dollars, so the 
burden of the cost of running the OPTN is basically on the 
patients and the centers which goes through.
    With respect to the policymaking functions, through the 
charter and through the final rule, there are a variety of 
areas. The first and foremost policy area that we are supposed 
to have policy about is equitable organ allocation. The second 
one is to reduce the risk of transmission of diseases through 
transplantation to potential recipients. We are to address the 
issues of socio-economic disparities which occur through 
transplantation and try to minimize those, and then there are 
some issues related to policy. The Secretary recently came with 
the notion that the OPTNs should have policy pertaining to the 
performance of live organ donation in this country.
    Those are the charger areas that we are to address, and a 
variety of functions come up as time goes on which we also do, 
but those are the core areas that we are to address.
    Mr. Clay. In general, what are the demographics of 
individuals who make organ donations, both living and 
anatomical donation? Do they tend to be better educated or 
economically advantaged?
    Dr. Pruett. The donors or the recipients? I'm sorry.
    Mr. Clay. The donors.
    Dr. Pruett. The people who donate tend to be, in a large 
part, like Mr. Walls--educated and motivated to do such. And 
the people who are disadvantaged in our society who do not feel 
much of the motivation have a hard time sometimes generating 
the goodness of their hearts to think that they need to donate 
back to the system. It is not that it doesn't occur, clearly. 
There are clearly wonderful people throughout the entire 
system. It is our job as an organization and as a community of 
transplantation to embrace the good values of what we as human 
beings can do for each other to try and make that work, but on 
the whole there are disparities.
    Mr. Clay. And, in general, the initial reaction of family 
members when that option is brought to them? What have you 
witnessed?
    Dr. Pruett. I usually don't witness much of the donation 
process. We try, obviously, to separate from the transplant 
surgeon's side. But just being a physician in the hospital, I 
have certainly seen plenty of folks die, and certainly have 
seen people who have been requested, and the people who feel 
like they have been given a short shrift in that they have not 
been treated fairly are oftentimes quite angry at the time of 
death, and oftentimes the concept of donation is just not in 
their parlance.
    Mr. Clay. Thank you for that.
    Dr. Burdick, finally, is there reliable data available on 
the number of organs that are available to the listed patient 
population each year but are never transplanted due to the 
inability of a transplant center to confirm a donor's intent in 
a timely fashion?
    Dr. Burdick. I am not aware of specific data on that score. 
I think that the implication that one can draw from comments 
you have already heard, that organ donation has clearly been 
affected in a very positive way by State registries which 
facilitate just the concern that you have expressed in that 
question. It is an indirect way of indicating that system could 
use more facility, and it shows the benefit of it when the 
registry is in place.
    Mr. Clay. Let me ask you to what extent would increasing 
our donor pool help close the gap between the number of 
patients on the waiting list and the number of transplantable 
organs that are recovered? I am assuming that it will never be 
a perfect one-to-one ratio.
    Dr. Burdick. We did 26,000 transplants last year, and we 
can show that if we were to achieve the national average of the 
Collaborative goals of 75 percent conversion rate, and rounding 
off to four organs per donor, we would move that to just over 
35,000. That is our goal now for our Collaborative for this 
coming year, with 97,000 patients on the list.
    There are patients who are added, there are patients who 
die waiting, as we have talked about, but we can definitely 
begin to really turn around deaths on the waiting list and 
eventually begin to show an annual decrease in the number of 
patients waiting for this life-saving therapy if we can reach 
that level. So we are 9,000 donors a year away from having 
that, and it is a doable proposition.
    Mr. Clay. Thank you so much for that response.
    Representative Lynch.
    Mr. Lynch. Thank you, Mr. Chairman.
    I just want to ask one question and one comment before I 
ask it. With regard to the prospect of cultivating the prison 
population as possible donors, I do have some knowledge in this 
area. I know that there are some Asian countries that are very 
aggressive, to put it mildly, very aggressive in cultivating 
their prison population for organ donation. Creepy is a good 
word. But I think it also lends a stigma that we do not want.
    From my own family's experience, I can say that organ 
donation, once it is understood--I remember Dr. Jenkins from 
the Leahy Clinic in Massachusetts explaining to me that the 
liver grows back after 60 percent of it is cut out for 
donation, and I kept saying, go over that part again. I am an 
attorney and considered myself fairly educated at that point, 
but I really honestly believe that education can do a lot of 
good in this area.
    I want to register my vote in opposition to looking at our 
prison population. I think that their incarceration and the 
appearance of coercion is just inescapable. As a civilized 
society, we do not want to go down that road.
    As strong a supporter as I am of organ donation, I think we 
can do it with well-educated and freely involved. I have the 
greatest faith in the goodness of humanity, and I have seen it 
so many times. We see it again here with Ms. Rubin and all of 
you.
    I think that is enough said. I don't think we want to go 
down that road.
    Second, I was struck by, Ms. Dunn, the difference in the 
increase that you saw in the Colorado/Wyoming example was a 40 
percent increase, while the United States generally experienced 
a 25 percent increase. That is statistically significant, I 
think, and I wanted to know if there are any, besides your 
wonderful work, approach. What is causing that? What is 
bringing the results that you see in terms of greater 
willingness to donate?
    Ms. Dunn. Well, it is really directly attributable to the 
work of the Collaborative, and partnering with the donor 
hospitals as well as the transplant programs for shared 
accountability. If you have a better partnership with the nurse 
at the bedside and the intensivist and hospital administration, 
donation becomes part of the fabric of the hospital so that it 
is always in the forefront of someone's mind, not in lieu of 
saving lives, but when all is done, there is nothing more that 
can be done, when donation becomes a question, then families 
have been treated well by the hospital and they are more 
inclined to say yes.
    Mr. Lynch. Well, I would be remiss if I didn't say thank 
you to all of you for your wonderful work and your continuing 
involvement in this issue. Certainly, we have a great leader in 
the chairman. I am sure that he will stay on this. I will be 
there to help him.
    Thank you. I yield back.
    Mr. Clay. Thank you so much, Mr. Lynch. We heard you loud 
and clear about the prisons.
    Let me ask a panel-wide question, and anyone can tackle it 
as you see fit. An area where we have identified significant 
potential for improving donor/recipient outcomes is in the area 
of paired and list donations. We can just start at this end of 
the table. Can you describe some of the systems or networks in 
place that offer paired or list donation programs? And are 
these simply demonstration programs that need more study, or 
are they being implemented nationally? We will start on this 
end of the table and move down.
    Dr. Burdick. At present the active systems are mainly 
programs that have their own local activity. There are one or 
two other regional, I think you would say, systems that involve 
multiple centers, and I don't have really a lot of specific 
information about this.
    There has been some very excellent statistical work done to 
determine to what level the existence of a national system for 
paired donation in settings in which it is not possible for a 
given donor to provide an organ to a given, chosen recipient, 
but rather could to some other in an exchange way. This could 
be extended to produce the possibility of hundreds more 
transplants per year.
    This system is mathematically quite clear. It has not yet 
been put into practice, but the activity of the OPTN in this 
area has only recently begun to be directed toward these things 
because of the issues that have been barring Federal activity 
as a contractor of HRSA. Now that we are in a position to be 
able to give the green light to working on that system, the 
process is going to be worked on and explored, and we think it 
is very promising.
    Mr. Clay. Thank you.
    Dr. Pruett.
    Dr. Pruett. Yes. It is an area that we are very enthused 
about. It is a potential. I don't even know the number of 
people who would like to donate who can't because of blood 
groups or sensitization or whatever reasons.
    The major concern for us on the OPTN side and the UNOS side 
is to keep our enthusiasm inside of the notion of patient 
safety in that we want to make sure that whatever systems that 
we embark on is that we are setting up a system that is safe 
for the people who do it, that the organs go to the intended 
way that they want it to be done, that they are fully informed, 
and that, in fact, we can do this in the best possible way that 
we can.
    So we are sort of on both sides. We recognize the 
tremendous potential and are tremendously enthused about that 
potential, and at the other side, we are on the cautious side 
as to say, as Dr. Burdick said, we are just now getting into a 
large part of this business because of change in both 
perspective and law, and from the oversight side we are now 
just starting to get into the oversight of life organ donation 
as part of our mission, so that we are still working through 
our processes to set our priorities for patient safety and 
equitable allocation.
    Mr. Clay. Thank you.
    Ms. Dunn.
    Ms. Dunn. Certainly there are a handful of OPOs that are 
involved in coordinating the live donation or the paired 
exchange program. I would say there are probably some 
differences of philosophy within OPOs that if we really turn 
our attention to facilitating paired exchange programs that it 
takes our eye off the increase in deceased donor donations, so 
that is where we sit.
    Mr. Clay. I see. Thank you.
    Anything to add?
    [No response.]
    Mr. Clay. OK. Let me ask another panel-wide question. I 
would like to address some of the issues regarding living 
donation. We can begin with Dr. Burdick and proceed from there. 
When screening living donors, are there standards established 
by stakeholders for the medical and mental screening of 
potential donors? And are there adequate counseling or 
information services provided to potential living donors?
    Dr. Burdick. As Dr. Pruett mentioned, this has recently 
been put into the expectations for our contractor, to have 
criteria for membership, for appropriateness of a program to be 
able to do living donation, and the criteria for consent. In 
fact, these have recently been established as policy by the 
OPTN.
    There have been extensive discussions about much of the 
rest of what you asked about--that is, how well the counseling 
is done, how it is done, and, in fact, this is also an element 
in the regulations for transplant programs now put out by CMS.
    The level of detail that one needs to get to in terms of 
medical practice, which is not exactly what HRSA oversees, is 
something that is under very careful discussion by the 
community now, and there will be further actual specific policy 
from HRSA's contractor, the OPTN, on this topic shortly, I 
think.
    Mr. Clay. Thank you.
    Dr. Pruett.
    Dr. Pruett. I would just reiterate that there are a number 
of different guidelines and recommendations which have been put 
out by international transplant societies about what 
constitutes the kind of workup which needs to be done. It is in 
our literature. What we are trying to do in terms of the OPTN 
is set some resource documents for our members that they can 
both have for making sure that they are complete in the way 
they do things, but, more importantly for the people who are 
entering into live donation, to understand what the purpose of 
what we are to do in this endeavor.
    What we really want is to make sure it is as safe as it can 
be done, that people can have the optimal amount of information 
that they need to make a good decision, and then to make that 
decision. It may be not to donate. It may be to donate. But we 
want to make sure that they have the information that they can 
use to come up with a good decision.
    Mr. Clay. Thank you.
    Ms. Dunn, any thoughts? Doctors. Ms. Rubin.
    [No response.]
    Mr. Clay. OK. I will allow anyone who wants to make a 
closing statement, a brief one, you can have at it.
    [No response.]
    Mr. Clay. I see we have no takers. I will conclude by 
saying thank you to this panel, as well as Mr. Walls. We think 
this will be the first in a series of hearings on this subject. 
I think that any national discuss on health care should include 
organ and tissue donation, as well as how we make the process 
more efficient.
    I want to thank you all again for being here, and that 
concludes this hearing. Hearing adjourned.
    [Whereupon, at 5:05 p.m., the subcommittee was adjourned.]

                                 
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