[House Hearing, 117 Congress]
[From the U.S. Government Publishing Office]


                  THE URGENT NEED TO REFORM THE ORGAN
                    TRANSPLANTATION SYSTEM TO SECURE
                    MORE ORGANS FOR WAITING, AILING,
                           AND DYING PATIENTS

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

                                HEARING

                               BEFORE THE

              SUBCOMMITTEE ON ECONOMIC AND CONSUMER POLICY

                                 OF THE

                         COMMITTEE ON OVERSIGHT
                               AND REFORM

                        HOUSE OF REPRESENTATIVES

                    ONE HUNDRED SEVENTEENTH CONGRESS

                             FIRST SESSION

                               __________

                              MAY 4, 2021

                               __________

                           Serial No. 117-18

                               __________

      Printed for the use of the Committee on Oversight and Reform
      
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]      


                       Available on: govinfo.gov
                         oversight.house.gov or
                             docs.house.gov
                             
                               __________
                               

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
44-569 PDF                  WASHINGTON : 2021                     
          
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                   COMMITTEE ON OVERSIGHT AND REFORM

                CAROLYN B. MALONEY, New York, Chairwoman

Eleanor Holmes Norton, District of   James Comer, Kentucky, Ranking 
    Columbia                             Minority Member
Stephen F. Lynch, Massachusetts      Jim Jordan, Ohio
Jim Cooper, Tennessee                Paul A. Gosar, Arizona
Gerald E. Connolly, Virginia         Virginia Foxx, North Carolina
Raja Krishnamoorthi, Illinois        Jody B. Hice, Georgia
Jamie Raskin, Maryland               Glenn Grothman, Wisconsin
Ro Khanna, California                Michael Cloud, Texas
Kweisi Mfume, Maryland               Bob Gibbs, Ohio
Alexandria Ocasio-Cortez, New York   Clay Higgins, Louisiana
Rashida Tlaib, Michigan              Ralph Norman, South Carolina
Katie Porter, California             Pete Sessions, Texas
Cori Bush, Missouri                  Fred Keller, Pennsylvania
Danny K. Davis, Illinois             Andy Biggs, Arizona
Debbie Wasserman Schultz, Florida    Andrew Clyde, Georgia
Peter Welch, Vermont                 Nancy Mace, South Carolina
Henry C. ``Hank'' Johnson, Jr.,      Scott Franklin, Florida
    Georgia                          Jake LaTurner, Kansas
John P. Sarbanes, Maryland           Pat Fallon, Texas
Jackie Speier, California            Yvette Herrell, New Mexico
Robin L. Kelly, Illinois             Byron Donalds, Florida
Brenda L. Lawrence, Michigan
Mark DeSaulnier, California
Jimmy Gomez, California
Ayanna Pressley, Massachusetts
Mike Quigley, Illinois

                     David Rapallo, Staff Director
              Richard Trumka, Subcommittee Staff Director
                        Ryan Galisewski, Counsel
                          Amy Stratton, Clerk
                      Contact Number: 202-225-5051

                  Mark Marin, Minority Staff Director
                                 ------                                

              Subcommittee on Economic and Consumer Policy

                Raja Krishnamoorthi, Illinois, Chairman
Katie Porter, California,            Michael Cloud, Texas, Ranking 
Cori Bush, Missouri                      Minority Member
Jackie Speier, California            Fred Keller, Pennsylvania
Henry C. ``Hank'' Johnson, Jr.,      Scott Franklin, Florida
    Georgia                          Andrew Clyde, Georgia
Mark DeSaulnier, California          Byron Donalds, Florida
Ayanna Pressley, Massachussetts
                         
                         
                         C  O  N  T  E  N  T  S

                              ----------                              
                                                                   Page
Hearing held on May 4, 2021......................................     1

                               Witnesses

Panel 1
Tonya Ingram, Patient Waiting for a Transplant
    Oral Statement...............................................     2
Dr. Dara Kass, Living Donor and Mother of Transplant Recipient
    Oral Statement...............................................     3
LaQuayia Goldring, Patient Waiting for a Transplant
    Oral Statement...............................................     5

Panel 2
Donna Cryer, President and Chief Executive Officer, Global Liver 
  Institute
    Oral Statement...............................................    12
Dr. Seth Karp, Director, Vanderbilt Transplant Center
    Oral Statement...............................................    14
Steve Miller, Chief Executive Officer, Association for Organ 
  Procurement Organizations
    Oral Statement...............................................    16
Joe Ferreira, President, Association for Organ Procurement 
  Organizations
    Oral Statement...............................................    16
Matt Wadsworth, President and Chief Executive Officer, Life 
  Connection of Ohio
    Oral Statement...............................................    17

Written opening statements and statements for the witnesses are 
  available on the U.S. House of Representatives Document 
  Repository at: docs.house.gov.

                           INDEX OF DOCUMENTS

                              ----------                              
Documents entered during the hearing by Unanimous Consent are 
  listed below.

  * National Council on Disability Statement; submitted by Rep. 
  Krishnamoorthi.

  * American Society of Nephrology Statement; submitted by Rep. 
  Krishnamoorthi.

Documents are available at: docs.house.gov.

 
                  THE URGENT NEED TO REFORM THE ORGAN
                    TRANSPLANTATION SYSTEM TO SECURE
                    MORE ORGANS FOR WAITING, AILING,
                           AND DYING PATIENTS

                              ----------                              


                          Tuesday, May 4, 2021

                  House of Representatives,
                 Committee on Oversight and Reform,
              Subcommittee on Economic and Consumer Policy,
                                                   Washington, D.C.
    The subcommittee met, pursuant to notice, at 12:11 p.m., 
via Zoom, Hon. Raja Krishnamoorthi (chairman of the 
subcommittee) presiding.
    Present: Representatives Krishnamoorthi, Porter, Bush, 
Johnson, DeSaulnier, Pressley, Maloney (ex officio), Cloud, and 
Clyde.
    Mr. Krishnamoorthi. The committee will come to order. 
Without objection, the chair is authorized to declare a recess 
of the committee at any time.
    I would like to welcome everyone to the Subcommittee on 
Economic and Consumer Policy's first hearing of the 117th 
Congress. It is an incredibly important one because, today, we 
are literally covering matters of life and death for many 
Americans.
    This hearing will address, quote, ``The Urgent Need to 
Reform the Organ Transplantation System to Secure More Organs 
for Waiting, Ailing, and Dying Patients,'' close quote.
    We will begin with a panel of witnesses who will share 
their personal experiences with the organ transplant system in 
America.
    Now I will introduce our witnesses. Our first witness today 
is Tonya Ingram. Tonya is currently waiting for an organ.
    Then we will hear from Dr. Dara Kass. Dr. Kass is uniquely 
acquainted with organ transplants, as she is the mother of a 
transplant recipient and she was a living organ donor to her 
child, and she's an emergency medical doctor.
    And we will hear from LaQuayia Goldring. LaQuayia is also 
waiting for a transplant.
    The witnesses will be unmuted so we can swear them in.
    Very good. Please raise your right hands.
    Do you swear or affirm that the testimony you are about to 
give is the truth, the whole truth, and nothing but the truth, 
so help you God?
    Very good. Thank you.
    Let the record show that the witnesses all answered in the 
affirmative. Thank you.
    Without objection, your written statements will be made 
part of the record.
    With that, Ms. Ingram, you are now recognized for your 
testimony.

  STATEMENT OF TONYA INGRAM, PATIENT WAITING FOR A TRANSPLANT

    Ms. Ingram. Thank you.
    Good morning. My name is Tonya Ingram. I am a poet, 
Cincinnati native, Bronx-bred introvert, Los Angeles resident, 
mental health advocate, cat auntie, Tom Hardy lover, and ``The 
Office'' fanatic, and I need a kidney transplant.
    I was diagnosed with lupus at 22 years old, and as a result 
of that, in October 2018, I was diagnosed with end-stage kidney 
failure. My entire world collapsed.
    Since then, I have lived on dialysis just waiting to 
receive this new form of life. My health is my job. That is my 
main, primary focus. I have to be aware of the energy I have. I 
have to take all these medications. I am exhausted most days.
    I started telling my story because I have to take my health 
into my own hands. I have to be my own advocate. I just knew 
that I would get more out of Instagram than from the actual 
healthcare system.
    Last night, I hooked myself up to a dialysis machine at 9 
o'clock at night for the eight hours it would take for a 
machine to clean my blood. At the age of 29, that's a lot to 
deal with, and I still have to wait for an organ to be able to 
have a second chance at living a healthy and long life.
    It is a very exhausting process waiting for a transplant. 
Because of my rare blood type, being on the list could mean 
that I have to wait 10 years before I can receive a transplant. 
Ten years is a very long time for anyone. I can't even think 10 
years into the future right now, and to know that I won't have 
a kidney until then is a very daunting and heavy thing.
    I know I'm not unique in that sense. That just is what it 
is. It's waiting. It's hard to know that I'm waiting for life. 
I'm waiting to live. And I'm standing alongside more than 
100,000 Americans, most of whom are waiting for kidneys, though 
others need hearts, lungs, livers, and other organs.
    Imagine reading about a broken system when you are still 
waiting, to read investigative reporting about literally 
hundreds of organs going mishandled and lost in transit. Every 
one of those organs is a shot at life, and yet they're being 
treated like old luggage.
    As I've learned, this is just one problem in a horribly 
broken organ donation system. To learn that 28,000 organs go 
transplanted every year, including more than 17,000 kidneys, 
almost 8,000 livers, 1,500 hearts, and 1,500 lungs, that is 
unconscionable.
    The organ procurement organization that serves Los Angeles 
where I live is failing, according to the Federal Government. 
In fact, it's one of the worst in the country. One analysis 
showed it only recovered 31 percent of potential organ donors. 
Audits in previous years found that L.A.'s OPO has misspent 
taxpayer dollars on retreats to five-star hotels and Rose Bowl 
tickets. The CEO makes more than $900,000. Even still, the L.A. 
OPO has not lost its government contract, and it has five more 
years to go.
    And so I wait. And I hope--I hope that it doesn't always 
have to be like this. Sometimes when you're in this diagnosis, 
it kind of feels like this is it and I will just be waiting 
forever until I'm no longer here, but I think this is the 
reform that will bring true hope. It's to say that you will get 
it. I will get this organ. I will get this new chance at life 
at continuing, knowing that the chapter doesn't have to end 
here and there is this whole other story that I get to engage 
with because now I have a second chance at life.
    My dream is to have a healthy body, a working kidney, and a 
life that is mine.
    To Congress and the Biden administration, please remember 
that I am a person with a story before kidney failure, and I'll 
have a life after kidney failure. Every other patient on the 
organ waiting list has their own story, their own life to live, 
if the system will let them. We have so much to live for, and 
that's why we're fighting for this opportunity to do that--to 
live.
    Please don't make us wait.
    Thank you.
    Mr. Johnson. Mr. Chairman, you should unmute.
    Mr. Krishnamoorthi. I thought I--can you hear me now, Hank?
    OK. I'm sorry.
    Mr. Johnson. Yes.
    Mr. Krishnamoorthi. I said thank you, Ms. Ingram.
    I wanted to recognize Dr. Kass for her testimony. Thank 
you.

    STATEMENT OF DR. DARA KASS, LIVING DONOR AND MOTHER OF 
                      TRANSPLANT RECIPIENT

    Dr. Kass. Thank you to the committee for having us today. 
This is a critically important topic.
    Sammy Kass is our youngest son. He was born smaller than 
our other children at just over five pounds.
    Babies lose weight right after they're born, but most gain 
it back in the first couple of weeks. When they don't, we 
looked for clues to say that something might be wrong.
    When Sammy was eight weeks old, we found that he had a 
condition called alpha-1 antitrypsin deficiency. This is a 
recessively inherited disorder that neither my husband nor I 
knew we carried.
    Being a doctor and his mom, I was devastated. His liver--
his disease was causing him liver damage, which was, in turn, 
preventing him from gaining weight. We spent the next few 
months seeing doctors and supporting his needs, watching him 
closely, aware that a small percentage of babies with this type 
of liver damage would not get better but would get worse, and 
would ultimately potentially need a liver transplant.
    One afternoon, just shy of Sammy's first birthday, we had 
to take him to the emergency department because he had a fever. 
We needed to know if he had an infection in his belly near his 
liver. After the workup was finished, his doctor pulled me 
aside and said, Today, he is going to be OK, but he's headed 
for a transplant. He then looked at me and said, Would you 
consider being his living liver donor?
    At that moment, after nearly a dozen years of being a 
doctor and a few less being a mom, images raced through my 
head. I saw patients getting sicker waiting for an organ, and 
their families exhausted, knowing that the call could come at 
any time, often in the middle of the night, and sometimes not 
at all.
    I remembered the delays and the frustrations I had 
personally communicating with the organizations responsible for 
this process, and I knew in an instant that I could bypass that 
entire system by becoming a living donor and saving my own 
son's life. In that moment, the overwhelming fear that I had 
that Sammy would never receive a new liver vanished.
    Living donation is a privilege, and it is not without its 
risks and complications. The socioeconomic burdens of living 
donation, like unpaid time off of work; multiple family members 
becoming patients in one family; and the inability of the 
donor, like me, to serve as the primary care provider for the 
transplant patient means that families without means or support 
or resources may not be able to pursue this route even if it's 
medically possible.
    And living donation is, of course, not possible for all 
patients, like those who need a heart or a pair of lungs. It 
was a saving grace for our family, but by no means should be 
considered the scalable solution.
    The backbone of organ transplantation in America is 
deceased donation, which means--which is managed by a network 
of organ procurement organizations, or OPOs. We cannot 
overstate the urgency upon us in reforming the OPO system to 
ensure that it is functioning and accountable.
    As an ER doctor, I had witnessed repeatedly OPOs 
mismanaging families, communicating poorly, and ultimately 
leaving organ transplant patients languishing on the waiting 
list. OPO treatment of communities of color has been deeply 
substandard, leading to worse outcomes for Black and Brown 
patients needing transplants as well. And never--not once--has 
a single OPO in this country lost its government contract 
despite these very deep breaches in public trust.
    While my family's transplant experience reinforced my 
understanding of the need to support OPO reform, living through 
this last year of the COVID pandemic has accelerated the 
urgency for this system to work for all patients. While we've 
lost over half a million Americans to COVID, millions more who 
have recovered will have long-term effects from their 
infection.
    Acute COVID infection sets off an inflammatory response in 
your body that can affect your lungs, your heart, your kidneys, 
or your liver. And communities of color have been decimated by 
this pandemic. The fact that COVID infection could cause organ 
failure leading to transplant means that Black and Brown 
patients, who are already hardest hit by their COVID infection, 
will be further harmed by the broken organ procurement system 
that hurts these patients the most.
    You don't have to take my word for it. As Chairman 
Krishnamoorthi and Representative Porter wrote in February, we 
must move urgently to implement OPO reforms today to serve 
COVID-19 survivors tomorrow.
    In conclusion, I will reiterate that my family is one of 
the lucky ones. Even in the face of a devastating diagnosis and 
a life-altering path for our child, we knew we were in a 
position of privilege. And now, almost seven years later, my 
son and I will be able to share--split one chopped liver, and 
we're here to fight for those who still need their chance.
    Thank you very much.
    Mr. Krishnamoorthi. Thank you, Dr. Kass.
    I'd like to now recognize Ms. Goldring for your testimony.

     STATEMENT OF LAQUAYIA GOLDRING, PATIENT WAITING FOR A 
                           TRANSPLANT

    Ms. Goldring. Good morning. Thank you, Mr. Chairman, 
Ranking Member Cloud, and subcommittee members, for the chance 
to testify.
    My name is LaQuayia Goldring. I'm 31 years old. I'm in the 
waiting category of waiting and ailing patient, and I'm trying 
desperately to avoid becoming a dying patient.
    As a toddler, I was diagnosed with a rare kidney cancer 
called Wilms tumor that took my left kidney. And at the age of 
17, I went into complete renal failure and had to get a right 
kidney transplant.
    Unfortunately, in 2017, at the age of 25, I went back into 
complete renal failure. I'm now--I've now been waiting six 
years for a second kidney transplant, and every day that I'm 
waiting, I'm closer to becoming one of 12 Americans who die 
each day waiting for a kidney transplant.
    The only treatment keeping me alive is going to the 
dialysis clinic three times a week--every Tuesday, Thursday, 
and Saturday--just to live. And each time, I'm stuck with two 
needles.
    I am currently at the dialysis clinic undergoing treatment 
as we speak today. I can't miss dialysis ever. Even when COVID-
19 hit, I still had to come.
    And, of course, I'm grateful for the opportunity to come to 
dialysis and that it's keeping me alive, but it isn't easy. 
Each day that I come in here, I undergo changes to my blood 
pressure, and I get to a point to where I can barely talk, I 
can barely see, or even be able to walk.
    Many a days that I come out of here, I have to be helped or 
aided to my car, and many a times carried into my home. With my 
poor kidney function, the many changes causes depression, 
anxiety, nausea, vomiting, and changes to my appetite and my 
mood. The longer I wait for a kidney, the longer I feel like my 
life is hanging in the balance, even though there are plenty of 
willing donors ready to help. And I know this is the story of 
many Americans across the Nation.
    I look forward to the day that my donor has--the donor 
calls me and tells me that they have the gift of life just for 
me, just like when I was 17. I live to honor my first donor's 
life by being a big sister, advocating for the need of 
transplantation, and becoming a doctor one day.
    Thank you for this opportunity.
    And I just want to reiterate we need these organs now. The 
longer that we sit and wait is the longer that we're closer to 
death. I've had to undergo many a treatments, and I've been in 
heart failure twice and have had to recover. It's not much 
longer that my body will be able to undergo dialysis.
    Thank you.
    Mr. Krishnamoorthi. Well, thank you, Ms. Goldring, for your 
testimony.
    By agreement with the ranking member, the chair and the 
ranking member will each take up to two minutes for questions.
    With that, I now recognize myself for two minutes of 
questions.
    Dr. Kass, I'm moved by your courageous act of love and 
selflessness. What did you know about OPOs that made you think 
that the organ wait list was not an option for you and your 
child?
    Dr. Kass. So, unfortunately, as an emergency medicine 
doctor, every time a patient comes in who won't make it, it 
could be an opportunity to initiate the conversation around 
organ transplant. And that's the beginning of the frustration 
oftentimes. Getting that communication started in a timely 
fashion that also respects the fact that a family has just come 
in, usually unexpectedly, for the worst day of their life, but 
you know that there might be a chance to turn that into a gift 
to somebody else that's been living through that hardship for 
months or years on end.
    I had been a doctor in the ER for about 10 years before I 
realized that my own child would need a transplant, and I just 
saw all those conversations not happening when there was a 
possibility, and I just knew that, especially for a child, who 
is really, at that point, one year old, knowing the devastation 
families go through in that moment when they lose a baby that 
small, I just wasn't necessarily going to--I was going to try 
to except myself out of that circumstance if possible, because 
I knew that that process was frustrating, it was flawed, and it 
often failed. And I just was--you know, the opportunity to 
bypass that was one I was going to take, even if it meant 
becoming a patient myself.
    Mr. Krishnamoorthi. Wow.
    Ms. Ingram, you know, thank you for sharing your story. You 
know, your resolve is inspiring. You know, what do you plan to 
do after you get your transplant?
    Ms. Ingram. Thank you. Well, once I get my transplant, I 
plan to live. As I said in my testimony, I have to perform 
dialysis every night for eight hours, and that--that's a lot. 
That's exhausting. I can't do simple things like take a bath. 
And I think just having a transplant gives that--just new life. 
It gives me the simple things that most people don't have to 
worry about.
    And at the age of 29, there's so much life ahead of me, and 
I want to be able to enjoy that and wake up to that every day 
and not have to worry about, you know, doing dialysis or being 
exhausted or having to fight my mental health to believe that 
I'm worthy of living. And so having that transplant is truly, 
is truly another opportunity to just live the life that--that I 
want.
    Mr. Krishnamoorthi. Thank you so much.
    Finally, Ms. Goldring, let me just ask you one short 
question, which is: Do you feel that as a woman of color, that 
you are in an especially tough situation trying to get an organ 
transplant?
    Ms. Goldring. Yes, I do. It just seems like I've been let 
down by the system, because I'm having to advocate for myself. 
And as a Black woman, it feels like there's not enough 
education that's available on organ donation for people that 
look like me, Brown and Black people.
    I think that the OPOs could be doing a better job by 
getting out into the communities and speaking to communities of 
color and going into the hospital and educating
    [inaudible] who could possibly be possible donors and 
talking to those families and allowing them to know the 
importance of organ donation and the urgency to--for somebody 
else to be able to be saved and just what that gift of life 
could do for somebody else's life.
    Mr. Krishnamoorthi. Very good. Thank you.
    Mr. Cloud, you're recognized. I went over a little bit, so 
I apologize. You can have the same amount of time.
    Mr. Cloud. Well, thank you, Chairman, and I appreciate it.
    Let me just, first of all, say thank you all for being 
here. Your courage truly is inspiring, not only in just being 
willing to come before Congress in a national audience and 
share your very personal story, but the courage you live with 
each and every day and the challenges that you face each and 
every day. It's truly inspiring and, certainly, I'm thankful 
for the opportunity that we've been able to work together on 
this issue, and we'll hopefully begin to see some progress on 
it.
    Dr. Kass, I wanted to ask you. You've had some experience 
in interacting with OPOs, and I know we're going to kind of get 
some--into the nuts and bolts in the next panel, but just your 
recommendations, it seems like the incentive structure was all 
kind of messed up. We maybe have made some progress, but if you 
could speak to what would be the right things we should be 
looking at from Congress when it comes to accountability in 
regards to OPO----
    Dr. Kass. So I think----
    Mr. Cloud [continuing]. With your experience.
    Dr. Kass. So from my experience, I think the first step 
obviously is accountability and really objective measures that 
have to be lived up to by the over 50 OPOs around the country, 
to say, this is the standard you need to meet, whether it's in 
the initiation of the conversation, the community outreach and, 
more importantly, delivery of those organs to patients that 
need them.
    It's really about the fact that this is basically a system 
that has not had oversight for decades, and we need to start 
getting to the process of--point where we say, you are not 
performing, and you're going to lose your contract; that your 
spending and your reporting can't just be your word, but it has 
to be objectively measured and it has to be accountable. And 
then it will translate to lives saved every single day.
    The delays in those conversations, the delays in us finding 
these people to come to the hospital and start those 
conversations, and then make sure that we get to the point of 
donation is actual people dying, waiting for those organs. And 
I can't----
    Mr. Cloud. Right.
    Dr. Kass [continuing]. Stress enough that, as an emergency 
medicine doctor who's there when there's already been one 
tragedy, the idea that there might be a second due to the delay 
in the process, because the linchpin of the entire organ 
donation system rests with the OPOs, is the actual tragedy we 
need to solve right now.
    Mr. Cloud. Yes. Well, thank you.
    Ms. Ingram and Ms. Goldring, really the question I have for 
you is: What--this is an opportunity to speak to people, both 
on the committee, but beyond the committee. What would you want 
people to know who are--either haven't even--it hasn't crossed 
their mind to consider organ donation? What would you want just 
people to know when they're thinking about this issue, 
considering what they should or should not do in relation to 
this?
    If you want to go first, Ms. Ingram.
    Ms. Ingram. Sure. Well, I mean, for me, it kind of boils 
down to the simple fact of keeping people alive and just the--
what that holds, like, we get to----
    Mr. Cloud. Right.
    Ms. Ingram [continuing]. Sit here right now, and this is 
living. We get to--right now, I'm looking into the ocean and, 
like, I just--I get to live. And I feel like there's so many 
words to, like, describe that, but essentially that's just the 
gift of being able to have an organ, is to be able to engage 
and like--and live this beautiful, full life.
    And I just--honestly, like, I don't want to die. And that 
may sound, you know, really intense, but living--just having 
this diagnosis with lupus has, like, done so much to me that, 
like, I understand if I had this organ, I can--I can just be. I 
can tell my story. I can write poems. I can be just a full 
person, and I want that for myself.
    And I'm not just speaking for me, but for everyone who just 
doesn't want to die. And I just--yes. I think it just boils 
down to that, just the beauty of life and not taking that for 
granted.
    Mr. Cloud. Yes, ma'am.
    Ms. Goldring?
    Ms. Goldring. Yes. So I would like to tell everybody that 
it really is the gift of life. Just to reiterate, you get an 
opportunity to go from being hooked up to a machine like a dog, 
whether it's every night or three times a week, to having the 
freedom to travel with your family once again, to just--to 
really go--to even go to the bathroom. I mean, we take that for 
advantage. We take the fact that our hearts and our kidneys 
work together, or, you know, what our liver does for our body, 
or just other organs.
    By being an organ donor, you give that person or persons a 
chance to have a life that they've dreamed of, just like you've 
dreamed of. It's an opportunity to be able to educate other 
people and to help other families. Like, for me, kidney disease 
runs in my family, and four of my family members have passed 
away waiting on kidneys when, you know, somebody else in my 
town or somebody else even across the Nation knew that organ 
donation was an option for them, they could have been saved. 
Somebody else could sign up.
    And me, even being a past transplant recipient, I actually 
signed up to be an organ donor at the age of 16, because I 
educated myself and I made sure that the day that I go from 
this Earth, that I'm still able to pass along my--excuse me--my 
organs so that I can save a life. You know, if I could be 
selfless like that, anybody else can as well.
    Mr. Cloud. Yes, ma'am.
    Thank you, Chairman.
    Mr. Krishnamoorthi. Thank you. Thank you, Congressman 
Cloud. I really appreciate your questions. And thank you to the 
witnesses.
    I also want to recognize my chairwoman, Carolyn Maloney, 
who's joining us today, and thank you for her incredible 
leadership on this and other issues. We're so grateful for your 
presence.
    Now we're going to move to opening statements.
    I recognize myself for an opening statement, and then Mr. 
Cloud will follow.
    We just heard from Tonya and LaQuayia how painful it is to 
wait for an organ transplant, knowing that on the day that 
organ comes, if it ever comes, their life will be transformed. 
Too many Americans--over 107,000--are on an organ wait list. 
Too many--33 every day--pass away before an organ becomes 
available.
    The pandemic is putting further pressure on the strained 
system as COVID-19 further ravages organs. Simply put, we need 
to get better at recovering every viable organ. Each one saves 
a life, and there is one group of people that could step up to 
save the day.
    You may not have heard of organ procurement organizations, 
known as OPOs, but they play a key role in organ transplants. 
Today's hearing will explore the dysfunctional system that has 
allowed OPOs to fail the communities they serve.
    OPOs are responsible for organs obtained from deceased 
donors, which account for over 80 percent of transplants. When 
a hospital has a potential donor, they call the regional OPO, 
which is then supposed to retrieve any viable organ and deliver 
it to a transplant surgeon with a patient ready to receive it.
    Given their central role in the transplant process, OPOs 
need to strive for perfection in their public mission, but 
unfortunately they've been falling short.
    For years, OPOs have faced no outside incentive to perform. 
They evaded public scrutiny, refusing to reveal data showing 
their success and failure, hiding behind a wall of jargon and 
obfuscation.
    Each OPO enjoys a regional monopoly under the law with no 
competition whatsoever. No OPO has ever lost its certification, 
no matter how poorly it has ever performed. They set for 
themselves disappointingly low expectations, then congratulate 
each other for lackluster results with high executive salaries 
and mutual--and invitations to lavish board retreats.
    An effort spanning the Obama, Trump, and Biden 
administrations has resulted in a rule that will enforce 
objective performance metrics and create competitive pressure 
for OPOs to succeed. This bipartisan rule will result in at 
least 7,300 more transplants each year.
    Not only do OPOs fail at their mission to secure organs, 
they are rife with waste and mismanagement. Unusual among 
Medicare programs, their costs are 100 percent reimbursed, even 
costs unrelated to care. So, extravagant executive compensation 
and luxury perks may be passed off onto the taxpayer. 
Meanwhile, frontline OPO workers are overworked and underpaid, 
hurting their ability to recover every organ possible.
    Some OPO failures have been disastrous. Kaiser Health found 
evidence of hundreds of organs delayed, damaged, or lost in 
transit. Last year, an OPO delivered lungs for transplant, but 
never tested a sample they collected for COVID. The lungs were 
infected with COVID, which killed the transplant patient.
    In another case involving two organs, the donor's blood 
type was incorrectly identified. Tragically, one transplant 
recipient died, and the other was gravely injured.
    OPO reform is an urgent health equity issue. Patients of 
color are more likely to need an organ for transplant, but 
unfortunately they are less likely to be referred for 
consideration, less likely to get on the wait list, and less 
likely to receive an organ.
    OPOs could better serve their patients by engaging with 
communities of color for donation, but unfortunately OPOs are 
more likely to approach a potential White donor, and that White 
organ is more likely to go to a White patient.
    OPOs have been blamed, but OPOs have blamed communities of 
color in return for not donating. But unfortunately they're 
resting on unfounded stereotypes to justify not trying.
    The San Francisco OPO is a model of how it's done. Under 
the leadership of the first Black female CEO of an OPO, 
diversity has become a priority, and patients benefited. Total 
donations went up 29 percent, including 70 percent among Black 
donors.
    OPOs have resisted oversight, and some OPOs have brazenly 
tried to thwart our investigation here. For the patients that 
are ailing, I will not let OPOs keep failing them. Saving lives 
is above politics, and OPO reform is a bipartisan issue.
    I want to thank Ranking Member Cloud and my Republican 
colleagues for joining with us in this effort. We join in a 
bicameral, bipartisan effort in support of the final OPO 
performance rule which was arrived at in the Trump 
administration. Fortunately, the Biden-Harris administration 
heeded our call to begin in implementing that rule.
    I look forward to working with my friends across the aisle 
in continued oversight and reform that will secure more organs 
and save more lives.
    With that, I recognize Ranking Member Cloud for his opening 
statement.
    Mr. Cloud. Thank you, Chairman Krishnamoorthi.
    It's great that we get to be here today to work on an issue 
like this, especially in the context of how we've seen Congress 
working oftentimes. It's great to be able to come together on 
an issue and work for the--what's best for people.
    I do want to thank the witnesses for being here today. As I 
mentioned before, it's amazing for you to have the courage to 
come here today and to share your stories. I really, really 
appreciate it. It helps put a face on the issues that we're 
dealing with today.
    I want to thank also, as I mentioned before, the chairman 
and colleagues on the other side of the aisle, as well as those 
who have joined in this effort, on keeping this a bipartisan 
issue that we can focus on. It's been refreshing. I'm excited 
to see what we can accomplish as we continue to work on this.
    Organ procurement and transplants are not something most 
people think or talk about every day, yet every day there are 
107,000 people who are currently on the national transplant 
waiting list, and their families cling to the hope that today 
will be the day they get the call that their life-saving organ 
is available.
    The U.S. system for organ donation and recovery is among 
the best in the world, but there is a lot of work to be done to 
make it better. In a perfect system, it's estimated that we can 
recover up to an additional 28,000 organs per year. That means, 
of course, thousands more lives saved each year, and the hopes 
and dreams of so many able to be put in--into motion.
    Though perfection isn't possible, striving to ensure we 
recover and successfully transplant as many organs as possible 
is literally a matter of life and death for many Americans. 
Reports of underperforming organ procurement organizations, or 
OPOs, began exposing what we now know is a very broken system.
    In response to President Trump's executive order calling 
for more reforms of the organ procurement system, the Centers 
for Medicare and Medicaid Services issued a final rule in 
December, which, after a brief pause from the Biden 
administration and thanks to the chairman and the work of this 
committee, the Biden administration re-issued just about a 
month ago.
    This rule aims to increase performance standards for OPOs 
and threatens decertification for lackluster performance. 
Finalization and implementation of this rule is an important 
step.
    However, OPOs are not the only actor in the system and 
certainly not the only problem. Hospitals which identify 
potential donors are inconsistent in how frequently they refer 
in-hospital deaths to OPOs for evaluation and recovery. We need 
to ensure hospitals know when and how to identify potential 
donors and who they need to contact to coordinate successful 
transplants.
    We also need to work to ensure that overlooked people in 
overlooked places have greater access, including increasing 
diversity of organ availability within the minority communities 
especially and improve access, and addressing many of the 
logistical challenges of access for rural communities as well.
    Of course, we know there's an ever-growing wait list for 
organs, and it's complex at times to get on to them, way too 
complex. We need to ensure that individuals who are eligible to 
get onto wait lists are on the list so when potential donor is 
identified, a recipient can be matched.
    Transplant centers face complications with insurance 
companies and certification for making medically sound 
decisions for their parent--for their patients, and that makes 
these centers understandably risk adverse, but that means 
viable organs are being discarded rather than utilized, which 
of course we know means lives lost. We need to change that.
    We need to ensure transplant centers are able to quickly 
and accurately assess each organ offered to their patients for 
potential transplant. Perhaps today, with patients, OPOs, and 
transplant centers represented on our witness panel, we can 
begin to examine how to fix the system. We must scrutinize the 
system in its entirety in order to truly bring about meaningful 
reform.
    Again, thanks to the chairman and thanks to this committee 
for tackling this issue. And thank you very much for the 
witnesses for being here to, first, share your stories, and for 
the ones to come for helping us dig into the nuts and bolts of 
this issue.
    I yield back.
    Mr. Krishnamoorthi. Thank you, Ranking Member Cloud.
    Now, I would like to introduce our second panel of 
witnesses.
    Our first witness today is Donna Cryer. Donna is the 
president and CEO of the Global Liver Institute, and she's a 
transplant recipient.
    Then we will hear from Dr. Seth Karp. He is the director of 
the Vanderbilt University Transfer Center.
    Next, we will hear from two witnesses from the association 
of organ procurement--I'm sorry--Association of Organ 
Procurement Organizations, also known as AOPO, its CEO, Steve 
Miller, and its president, Joe Ferreira.
    Finally, we will hear from Matt Wadsworth. Matt is the 
president and CEO of an OPO, namely, Life Connection of Ohio.
    The witnesses will all be unmuted so we can swear them in.
    Mr. Ferreira and Mr. Wadsworth?
    OK. Very good.
    Please raise your right hands.
    Do you swear or affirm that the testimony you're about to 
give is the truth, the whole truth, and nothing but the truth, 
so help you God?
    Very good. Let the record show that the witnesses answered 
in the affirmative. Thank you.
    Without objection, your written statements will be made 
part of the record.
    With that, Ms. Cryer, you are now recognized for your 
testimony.

    STATEMENT OF DONNA CRYER, PRESIDENT AND CHIEF EXECUTIVE 
                OFFICER, GLOBAL LIVER INSTITUTE

    Ms. Cryer. Thank you.
    Good morning. My name is Donna Cryer, and I am the 
president and CEO of Global Liver Institute.
    Thank you so much, Chairman Krishnamoorthi and Ranking 
Member Cloud and subcommittee members, for your bipartisan 
support and commitment to solutions to save the lives of the 
more than 100,000--107,000 Americans who are in need of an 
organ transplant right now.
    I was once one of these people. Because of an autoimmune 
disease that was diagnosed when I was in eighth grade, my 
entire digestive tract has been affected. Shortly after I 
graduated from college, I was told that I had so little liver 
function left that I would not survive two years without a 
liver transplant.
    Over the course of four months, I experienced multiorgan 
system failure, lost clotting factors, bleeding out repeatedly, 
and spent time in both medical and surgical intensive care.
    Ultimately, my parents, both school teachers, my mom at my 
bedside and my father at home taking care of my little brother, 
were told that I had fewer than seven days to live. 
Fortunately, an organ was donated within those seven days. But 
for 33 patients today and every day, that will not be the case. 
They will die waiting.
    Just last week, professional football player Geno Hayes 
died while waiting for a liver donation. He was only 33 years 
old. His loss reminds us that neither fame nor money nor status 
can ever substitute for a system that works efficiently to 
connect patients with precious life-saving organs. In fact, if 
we act today, the entire liver transplant waiting list could be 
completely eliminated, but that can only be accomplished by 
holding OPOs fully accountable.
    Since the transplant system relies on organ donation and, 
yes, while we need a holistic solution and everyone striving 
for excellence, changing allocation policies or tinkering with 
the other parts is like changing deck chairs on the Titanic. 
Only solving the organ donage crisis can really solve this 
problem for people.
    So that is why in this era of COVID, where we have seen 
just the disease ravaging organs and creating new patients in 
organ failure, we must act with even greater urgency.
    Together, patient organizations like the Global Liver 
Institute, the National Kidney Foundation, the American 
Association for Kidney Patients, organized medical societies, 
like the American Society for Nephrology--basically, every 
patient and medical organization was on one side of this issue 
with only AOPO on the other. I hope, today, you will go into 
and explore why that was the case.
    All the rest of us worked productively with HHS under both 
previous and current administrations to enact greater measures 
for transparency, accountability, and equity in the organ 
donation system.
    Equity matters. Ethically, scientifically, and by law, 
people of color are 1.5 to 4 times more likely to have 
conditions leading to kidney and liver failure, but less likely 
to receive transplants.
    Multiple studies have shown that OPO staff are less likely 
to approach families of color, families who look like mine. 
They are less likely to have the frequent conversations, the 
in-depth conversations, to spend time in those conversations 
that we know leads to successful agreement to donate. And they 
demonstrate bias in the assumptions of who would be willing to 
donate. I know from my personal and professional experience 
that that is simply not the case.
    My family's experience attempting to donate is just one 
example, but unfortunately it's all too common. Despite my 
father's death in a hospital from a car accident, with all the 
right decisions by my family with his doctor to keep his organs 
viable, his organs were not recovered. We brought our whole 
family and our pastor to be able to communicate our decision to 
donate, only to be told, rather perfunctorily, that there was 
nothing we could do; there was nothing to donate. It was 
devastating to us.
    Years of uncorrected poor performance--and I have been 
working in this transplant community since my own transplant, 
so I have seen this across 25 years, and I have certainly seen 
the behavior over the past two years. These activities, this 
poor performance, have created inequities because some 
patients, recognizing their low chances of getting a deceased 
donor organ where they live, travel and list at multiple 
centers.
    Most people can't afford to do this. Basically, patients 
feel they have to do the work of the OPO, because they can't 
rely on the organizations paid to find donors.
    I will simply end my time today saying that we need to act 
now. The OPO final rule was only a first step, a critical one, 
but patients can't wait, and we need to do more.
    Currently waiting in all of your home states are 3,888 
people in Illinois, 9,899 people in Texas, 21,146 people in 
California, 1,668 people in Missouri, 4,218 people in Georgia, 
4,621 people in Massachusetts, 6,817 people in Pennsylvania, 
and 4,962 people in Florida. On behalf of these patients, your 
constituents, and all of those waiting, on behalf of donor 
families who hope to give the gift of life out of death, and 
myself, I thank you, and I look forward to your questions.
    Mr. Krishnamoorthi.
    [Inaudible] Center. You are now recognized for your 
testimony.
    Dr. Karp. I'm sorry. That's me? I couldn't hear part of 
that.
    Mr. Krishnamoorthi. I said Dr. Karp----
    Dr. Karp. Yes.
    Mr. Krishnamoorthi [continuing]. I'd like to recognize you 
for your testimony.

  STATEMENT OF DR. SETH KARP, DIRECTOR, VANDERBILT TRANSPLANT 
                             CENTER

    Dr. Karp. Thank you so much.
    Chairman Krishnamoorthi, Ranking Member Cloud, members of 
the committee, thank you so much for the opportunity to testify 
today, and thank you so much for taking up this issue.
    My name is Seth Karp, and I am the director of the 
Vanderbilt Transplant Center in Nashville, Tennessee, and 
surgeon-in-chief of Vanderbilt University Medical Center. These 
remarks will express how important it is to continue to move 
quickly forward with the bipartisan effort to increase the 
number of life-saving transplants performed in the United 
States.
    A great honor of my professional life has been to be the 
surgeon for patients who need a liver or kidney transplant. In 
this role, I am part of a team that cares for and, in many 
cases, cures patients with end-stage organ disease. This team 
includes the donors and donor families, who in acts of kindness 
and courage, offer life-saving gifts during a time of immense 
sadness; the organ donation professionals who help families 
through the donation process; and the nurses, doctors, 
pharmacists, social workers, psychologists, psychiatrists, 
administrators, and all the other essential people who make 
every transplant possible.
    I tell the residents and medical students who want to learn 
about this wonderful field, in transplantation, time matters. 
We have 10 hours to get a liver from the donor to the recipient 
and about one hour to sew it in. For a heart, we have about six 
hours. Time matters. Transplant surgeons are always thinking 
about time.
    Of course, time also matters in a different way for our 
patients on the waiting list. Every hour of every day, as we've 
heard, on average, a patient will die waiting for an organ 
transplant in the United States.
    One of the patients I cared for in the hospital last week 
and who was waiting for a liver transplant asked me when I 
thought an organ would become available. That's the question 
that patients ask, but I know what they're really wondering is 
whether an organ will become available soon enough. Is there 
enough time? Time matters in transplantation.
    At Vanderbilt, more than a thousand patients wait for an 
organ. And as we've heard, across the United States, the number 
is close to 110,000. As Ms. Goldring, Ingram, and Cryer so 
eloquently testified, time matters.
    I studied the United States organ donation system, and 
aspects of what I see alarm me. Last year, I had the 
opportunity to cowrite a viewpoint in one of the journals of 
the American Medical Association with D.J. Patil, former chief 
data scientist of the United States.
    In that article, we provided evidence that the metrics used 
to judge the performance of organ procurement organizations 
were basically useless. Until a recent OPO final rule, 
performance was self-reported, and OPO employees admitted to 
having gaming the system. When threatened with decertification, 
one of the OPOs themselves successfully argued that because the 
performance data was self-reported and unaudited, they failed 
to meet a reasonable standard, and the OPO should not be held 
accountable.
    In other words, for decades, the metrics supposed to 
measure performance didn't measure performance, and the results 
have been disastrous, as you have heard. Using objective data, 
there is a 400 percent difference in performance between the 
best-and worst-performing OPOs.
    Many OPOs have experienced dramatic increase in their 
performance with targeted interventions or new CEO hires, and 
yet, importantly, these OPOs were not flagged as being 
underperforming.
    The only conclusion is that lives have been lost in the 
unaccountable system. I'm grateful that the culmination of 
bipartisan work produced a new rule to objectively measure OPO 
performance. It is imperative this effort be urgently followed 
with strong regulatory oversight to ensure the number of 
transplants is increased as quickly as possible. Time matters 
in transplantation.
    The tragedy of organ failure disproportionately affects 
communities of color in the United States, as we've heard. 
Black patients comprise 20 percent of the current organ 
transplant waiting list, despite being only 12 percent of the 
population. Therefore, the shortage of organs 
disproportionately--of organ donors disproportionately affects 
Black Americans. COVID-19 and its differential effect on 
communities of color will further exacerbate this disparity. On 
the other hand, increasing the organ supply will help address 
this disparity.
    Whenever I or, quite frankly, most everyone else in the 
field gives a talk on transplantation, we usually make two 
points. The first is that organ transplantation is a miracle of 
modern medicine. The second is the tragedy that there are not 
enough organs for everyone who needs one.
    I no longer use this second point, because I don't believe 
it. Based on my work, I believe that there are enough organs 
for patients who require hearts, lungs, and probably livers, 
and we can make a huge improvement in the number of kidneys 
available. In addition to improving OPO performance, new 
technologies already exist to dramatically increase the organ 
supply. We need a structure to drive rapid improvement in our 
system.
    The new bipartisan rule revising outcome measures for OPOs 
is an important first step in increasing the number of 
transplants, but it must be implemented quickly and 
effectively. Through your attention, we have had an historic 
opportunity to save more lives through transplantation. I hope 
significant progress can be made before the published 2026 step 
timeline. The urgency is now, and I implore you to act quickly, 
because, in transplantation, time matters.
    Mr. Krishnamoorthi. Thank you, Dr. Karp.
    Very powerful testimony from Ms. Cryer and Dr. Karp.
    Now I'd like to turn to Mr. Miller and Mr. Ferreira. By 
previous agreement, you have a combined five minutes to allot 
between the two of you as you see fit.
    You are now recognized for your testimony.

  STATEMENT OF JOE FERREIRA, PRESIDENT, ASSOCIATION FOR ORGAN 
   PROCUREMENT ORGANIZATIONS; JOINED BY STEVE MILLER, CHIEF 
     EXECUTIVE OFFICER, ASSOCIATION FOR ORGAN PROCUREMENT 
                         ORGANIZATIONS

    Mr. Ferreira. Thank you, Chairman Krishnamoorthi, Ranking 
Member Cloud, and members of the subcommittee. Thank you for 
inviting the Association of Organ Procurement Organizations to 
testify at this hearing.
    AOPO is a nonprofit organization that leads the organ 
donation community through innovation, advocacy, and education 
to pursue the day when every donation opportunity results in 
lives saved.
    My name is Joe Ferreira, and I am the president of AOPO. I 
am joined today by Steve Miller, who is the AOPO's chief 
executive officer.
    I am also the president and CEO of the Nevada Donor 
Network, a national and world-leading OPO serving most of the 
state of Nevada.
    As a first-generation American son of parents who 
immigrated to the U.S. in the 1960's in pursuit of the American 
Dream, I consider it a true honor to address you, the leaders 
of our great country.
    My mother is a former schoolteacher from Brazil, who runs 
my father's medical practice. My father, who was also born and 
raised in Brazil, has been practicing as a physician in the 
United States for more than 40 years, and at 81 years young, is 
still on the front lines of the pandemic, taking care of his 
patients, despite losing several colleagues and friends to the 
virus.
    As my parents have dedicated their lives to healthcare, I 
have followed in their passions and devoted more than half of 
my life to facilitate hope and healing to those who suffer and 
are faced with life and death.
    Last year, our amazing team at Nevada Donor Network made 
the gift of life possible for more than 400 grateful organ 
transplant recipients. I consider it a true blessing and 
privilege every day to work with our team on behalf of the 
heroic donors and those who desperately wait, some of which 
we've heard from today.
    OPO teams have been on the healthcare front lines for 
decades ensuring organ donation is possible. OPOs serve as a 
vital link between donors, their grieving families, and 
patients waiting for a life-saving organ transplant.
    The primary role of an OPO is to coordinate, recover, and 
allocate organs for transplantation. As well, OPOs educate 
communities to help people make informed decisions about 
donation, with the goal of increasing donor registrations. OPOs 
also provide families compassionate care and grief support 
before, during, and after donation occurs.
    One common misconception is that OPOs are solely 
responsible for the entire donation and transplantation system 
when, in fact, OPOs are the intermediary entity, and their 
success is highly dependent on collaborations with hospitals 
and transplant programs.
    At the start of the donation process, hospitals are 
responsible for notifying any OPO in a timely manner when a 
patient is on a ventilator and meets medical criteria to be an 
organ donor. Additionally, transplant centers must make the 
decision whether to accept or decline the organs offered by 
OPOs. It is important to understand the varying roles each of 
these system partners play to ensure every donation opportunity 
is optimized to save another life on the transplant waiting 
list. Working together, we are better.
    With sustained incremental growth in donation and 
transplantation rates over the past decade, continued success 
relies on an integrated system to save more lives. The 
subcommittee is right to point out that the donation and 
transplantation system has room to improve. AOPO is committing 
to helping OPOs do their part better and launched an aggressive 
new campaign to deliver 50,000 organ transplants annually by 
2026.
    The campaign institutes a series of objectives to expand 
collaboration, reduce health inequities, maximize organ 
utilization, and drive innovation and research. This effort 
will complement and exceed the rule expectations leading to 
more system accountability and stakeholder alignment.
    We are proud of what the OPO community has helped 
accomplish. At the same time, we can and must do better. That 
is why AOPO supports HHS' efforts to reform metrics used to 
assess the effectiveness of OPOs.
    While AOPO has concerns with some of the metrics 
introduced, it remains fully committed to using independently 
verifiable metrics based on sound data to make the organ 
donation and transplant system more efficient.
    In closing, AOPO is ready to work with Congress, CMS, and 
all stakeholders to leverage our community knowledge, 
experience, and relationships to further improve the organ 
donation and transplantation system for the heroic donors, 
their courageous families, and the patients waiting.
    Thank you, and we look forward to your questions.
    Mr. Krishnamoorthi. Thank you, Mr. Ferreira.
    Now I'd like to recognize Mr. Wadsworth for your testimony.

  STATEMENT OF MATT WADSWORTH, PRESIDENT AND CHIEF EXECUTIVE 
                OFFICER, LIFE CONNECTION OF OHIO

    Mr. Wadsworth. Thank you.
    Chairman Krishnamoorthi, Ranking Member Cloud, members of 
the committee, my name is Matthew Wadsworth, and I serve as the 
president and CEO of Life Connection of Ohio, the organ 
procurement organization responsible for facilitating organ 
donation in northwest and west central Ohio. I consider it a 
privilege to be able to show up every day and help members of 
my community, just as I find it a privilege to appear before 
you today.
    The OPO industry is broken, which is to say that all too 
often it does not serve patients. OPOs are grossly inefficient 
and unaccountable, and tens of thousands of patients, 
disproportionately patients of color, die unnecessarily as a 
result.
    For patients, we've turned the organ donor waiting lists 
into the hunger games, a deadly arena of our own making, in 
which we watch 33 Americans die every day. The single biggest 
problem is that patients across the country have absolutely no 
assurances that they will be served by a high-performing OPO.
    Data shows that OPO varies by almost 500 percent, meaning 
many OPOs are severely failing. But because of regulatory 
failures, not a single OPO has ever lost a government contract 
for poor performance in almost 40 years. Simply put, there's 
been no consequence to OPOs for allowing patients to die.
    As geographic monopolies, OPOs are not subject to any 
competitive pressure to provide high service. As the only major 
program in all of healthcare 100 percent reimbursed for all 
costs, we do not face financial pressures to allocate resources 
intelligently. OPOs are given blank checks with participation 
trophies as patients are given death sentences.
    It is truly hard to find a more important system with less 
accountability. Leadership matters. If patients need Congress 
and the Department of Health and Human Services to demand the 
very best leadership from OPOs across the country, historically 
they have not.
    I became CEO of Life Connection of Ohio in January 2020. 
Since then, we are on track to nearly double organ recovery in 
our service area within a two-year period, propelling us to be 
one of the best OPOs in the country. These numbers demonstrate 
how rapidly an OPO can improve with motivated leadership.
    When I arrived to Life Connection, I was welcomed by 32 of 
the most committed people you will ever meet, but they are 
overworked and understaffed. By being transparent with the 
supportive board of directors, we were able to transform the 
organization during a pandemic and experience rapid growth. We 
now have almost 90 team members dedicated to serving our 
families, hospitals, and donor heroes.
    My fear is that these same opportunities for growth exist 
all over the country, but we won't see them until after the 
2026 recertification cycle. By then, more than 60,000 Americans 
will have died on the organ waiting list.
    We at Life Connection of Ohio consider it our 
responsibility to bid on failing OPO territories, and I'm here 
to tell you that several of my high-performing peers are ready 
to expand their service areas as well. There are better options 
available for patients currently saddled with failing OPOs.
    When oversight bodies began to awaken to system failures, 
the Association of Organ Procurement Organizations, or AOPO, 
architected a misinformation campaign to confuse Congress and 
our regulators that can only be described as antipatient and 
antiaccountability. AOPO wrongly lobbied against the OPO rule, 
including arguing that holding failing OPOs accountable would 
be destabilizing, but this paradigm is exactly wrong.
    Too many OPOs are failing, and the greatest danger to 
patients would be if the status quo were perpetuated. Take, for 
example, AOPO's recent launch of a social media campaign 
eliciting patients to hashtag support OPOs. This is a perfect 
encapsulation of the problem with our industry. Far too many 
OPOs believe patients exist to support them when the exact 
inverse should be true.
    As of this morning, I, along with five other OPO CEOs, have 
withdrawn as AOPO members and are committing to principles of 
transparency, accountability, and patient-centric performance 
improvement.
    But the fundamental problem is that such commitments from 
OPOs are still optional. Most patients in need of transplant 
will not survive another five years until the 2026 
accountability cycle. Too many patients are dying today, and I 
appreciate everything this committee is doing on their behalf.
    Thank you.
    Mr. Krishnamoorthi. Thank you. Thank you, Mr. Wadsworth.
    Now we are going to start with member questions, and I now 
recognize myself for questions as well.
    Mr. Wadsworth, you just announced that your OPO and at 
least five other OPOs are leaving AOPO. I presume your decision 
is in part because, as you said today in your opening 
statement, quote, AOPO is investing heavily in anti-
accountability, lobbying, and misinformation campaigns designed 
to stall reform, correct?
    Mr. Wadsworth. Correct.
    Mr. Krishnamoorthi. I presume your decision is also 
because, as you said in your statement, quote, AOPO's actions 
are so antipatient and antiscience, right?
    Mr. Wadsworth. Correct.
    Mr. Krishnamoorthi. And as you said in your January letter 
to our subcommittee, you support the new oversight measures of 
OPOs because none of the current oversight is, quote/unquote, 
functionally effective, right?
    Mr. Wadsworth. Absolutely, yes.
    Mr. Krishnamoorthi. Well, it appears you support oversight 
and, unfortunately, AOPO does not.
    Mr. Ferreria, I would like to turn to you. You run the OPO 
called the Nevada Donor Network. I have your OPO's 2019 
financial statement filed with the CMS. It appears that your 
OPO spent roughly $6 million in 2019 on administrative and 
general expenses. Interestingly, in 2019, I see your OPO spent 
approximately $146,000 on travel meetings and seminars alone, 
and your itemization of administrative and general has an 
interesting line item for $576,000 for, quote/unquote, A&G. It 
took me a minute, but that means you have an administrative and 
general subcategory in your administrative and general 
category. Very vague.
    Now, Mr. Ferreria, I was informed by Mr. Wadsworth, a 
former executive of yours at the Nevada Donor Network, that 
your OPO has season tickets to the NHL's Las Vegas Golden 
Knights. Isn't that correct?
    Mr. Ferreria. That is correct, Mr. Chairman.
    Mr. Krishnamoorthi. And you also have season tickets to the 
Las Vegas Raiders too, right?
    Mr. Ferreria. That is correct.
    Mr. Krishnamoorthi. And according to Mr. Wadsworth and 
others, your OPO took a board retreat to Napa Valley in 2018?
    Mr. Ferreria. That is correct.
    Mr. Krishnamoorthi. And Sonoma in 2019, right?
    Mr. Ferreria. That is correct.
    Mr. Krishnamoorthi. Mr. Ferreria, what you're spending on 
the Raiders, the Golden Knights, Napa Valley, and Sonoma have 
one thing in common: They have nothing to do with recovering 
organs for ailing and dying patients on the organ transplant 
list. You know, Medicare covers all of the costs of OPOs. We 
want our taxpayer money to be spent on collecting organs, not 
on an extravagance. And so I'm going to be asking this 
committee to direct Mr. Miller and you, as the president of the 
AOPO, to provide us with five years of itemized general and 
administrative expenses.
    Mr. Ferreria, according to the project on government 
oversight, quote, behind closed doors OPO executives have 
impugned individual Members of Congress, amid discussions of a, 
quote, drip, drip, drip strategy to delay or, quote/unquote, 
slow roll our congressional investigation.
    Mr. Ferreria, you're not trying to obstruct my committee's 
investigation, are you, sir?
    Mr. Ferreria. No, I am not, Mr. Chairman.
    Mr. Krishnamoorthi. Mr. Ferreria, I want to bring up 
something called exhibit A.
    Can you please put up exhibit A, clerks?
    This exhibit A is an email that my committee received from 
some whistleblower folks, and in it it describes a call in 
which you participated in mid-January of this year. You see 
your name highlighted at the top, Joe Ferreria, CEO of Nevada 
OPO.
    I want to direct your attention to the bottom parts that 
are highlighted, which was a readout of this call. It says: The 
counsel that the OPOs hired to assist with the COR response has 
advised them that the OPOs should send slow and incomplete 
answers so that his team--namely me, my team--gets distracted 
and moves on.
    Mr. Ferreria, after what you've heard and seen this 
morning, you don't think that I'm going to be moving on from 
this investigation, do you?
    Mr. Ferreria. No, Mr. Chairman.
    Mr. Krishnamoorthi. That's good, because I'm not moving on. 
I'm going to stay focused on making sure that OPOs and AOPO 
live up to the standards that they should live up to and that 
our Medicare tax dollars are spent properly.
    I yield to Mr. Cloud for his five minutes of questioning.
    Mr. Cloud. Thank you, Chairman. Appreciate it.
    Mr. Wadsworth, could you discuss the effect of the warp 
incentive? It's been said that the past rule was--it warps the 
incentive mechanism for OPOs. Could you speak to that and talk 
about what the benchmarks could be--should be?
    It's been stated, I think Ms. Cryer pointed out that, you 
know, the new rule is a good first step, but there's still a 
lot of work to be done. What could we do--what should be done 
to ensure that that incentive structure is--aligns with what 
should be the proper motivations for organizations like 
yourself and OPOs?
    Mr. Wadsworth. Yes, absolutely. I think the steps that have 
been taken with this new rule--although, you know, it's not 
perfect, right? We're never going to get it perfect--is already 
motivating for OPOs to perform better. You know, the work that 
Dr. Goldberg and Dr. Lynch did with determining this CALC 
metric was really instrumental in the improvements we at Life 
Connection of Ohio.
    As far as incentives to perform, I'm not sure what 
incentive would be better than, you know, hearing from 
recipients like we have today. You know, it is life and death, 
like they've shared, and we get up every day ready to do 
everything we can to try to save as many lives as we can. I 
don't--I'm not sure what other incentive there needs to be, 
honestly.
    Mr. Cloud. I agree that should be. But as we're looking at 
oversight and accountability, I'm guessing, what are the 
measurables that we should have? Because they obviously--first 
of all, nobody was looking at them. You know, when you're self-
analyzing yourself, you're going to look great in the mirror. 
But, you know, as we're looking to bring oversight and 
accountability to this, what should those metrics be?
    Mr. Wadsworth. Yes. Using something that we can't 
manipulate, like the ICD-10 codes is good. I mean, if we look 
at donors per million population, organs transplant per million 
population like they do in other countries, that's great as 
well, but you're not taking into account varying death rates 
across the country.
    So I think the ICD-10 codes is a great start. I know 
there's been conversations about ventilated deaths possibly 
being a good metric. That'd be great as well. The conversion 
rate, which we've used in the past, is easily manipulated and 
completely inappropriate, which we've seen--which we've now 
seen.
    Mr. Cloud. Right. I appreciate it.
    Dr. Karp, you spoke to the fact that you said the 
measurables were basically useless, and then you also spoke of 
new technologies and improvements in the system because time is 
so critical. Could you speak to some of the same things Mr. 
Wadsworth did, but then also talk maybe about some of those new 
technologies that are available and what improvements we can 
make to the system?
    Dr. Karp. I thank you, Ranking Member Cloud. So I 
appreciate the question very much. I'm going to give you just a 
kind of a quick story about some work that was done by 
colleagues of mine, Dr. Brianna Doby, Malay Shah, and Ray 
Lynch. And what they did was they took this new CALC metric and 
they looked at the Indiana OPO. They went there and they did 
some targeted interventions, and over a very short period of 
time, they were able to increase the donation rate by about 44 
percent.
    But the key there is that if you look at their performance 
reports prior to the intervention, they were not seen as 
underperforming.
    Mr. Cloud. Right.
    Dr. Karp. So you've got a huge increase in this group and--
--
    Mr. Cloud. Yes.
    Dr. Karp [continuing]. Everybody wins. The Indiana OPO, 
they are super happy because they get to do what they love to 
do, which is to give organs, get more organs. The patients in 
Indiana are happy, and the researchers are happy. This is a win 
for--and Medicare happy because it saves money. People's lives 
are saved. So everybody wins when we put these metrics in 
place, and it can be done, and this is evidence that that's the 
case.
    And then the second question was, technology----
    Mr. Cloud. Just some of the, yes, technologies and 
improvements in the system, just----
    Dr. Karp. Yes. So this is pro---this is incredibly 
important as well. In 2019, there were six heart transplants 
that were performed using donors after circulatory 
determination of death. And I don't want to get into the 
technical aspects of that, but in 2019, that number was six. In 
2020, that number was 126. This is a new technology. This is a 
way that we can increase the number of heart transplants done 
in the United States dramatically.
    And if we think that there were 500 patients in the United 
States waiting for a heart in 2020, 500 patients that either 
died or were delisted because they were too sick, and you think 
in one year using a technology, we got another 100 transplants, 
if we could get another 500 transplants out of that technology, 
we could almost eliminate deaths on the heart transplant 
waiting list. That technology exists. It exists today, but we 
don't have a mechanism for getting it out to everybody that 
could use it, and it's going to run itself through the system. 
It's going to take too much time.
    Mr. Cloud. You mentioned that there was a 44 percent 
increase in a short amount of time.
    Dr. Karp. Right.
    Mr. Cloud. What was that time? Are we talking months? Year? 
Years?
    Dr. Karp. In less than a year.
    Mr. Cloud. Less than a year.
    Dr. Karp. Yes.
    Mr. Cloud. So, Mr. Ferreria, Mr. Miller, the question that 
I have for you then, you have a goal to improve 50,000 organ 
transplants by 2026, but we're talking about we need 
substantial improvement pretty quick, and obviously people are 
dying every day every time we don't see improvement. What can 
we do to have improvement on a much faster pace than 2026?
    Mr. Ferreria. Thank you very much for that question, 
Congressman.
    Mr. Cloud. What obstacles are in the way?
    Mr. Ferreria. Sure. And I--just to be clear, the goal is to 
reach 50,000 annual transplants by 2026, but the work to be 
able to do that and possibly exceed that begins right away. And 
so we've already set about mobilizing the AOPO members and 
collaborations with the stakeholder associations to begin that 
work today, and that actually started when we decided to launch 
this campaign and complement HHS' and CMS' work.
    And so I just want to be clear to the committee and the 
leaders of the committee and the general public that it doesn't 
necessarily mean that we are going to wait till 2026 to 
improve. We've already taken the initiative to support this 
role and are going to improve the system before that time, so 
that once we get to 2026, we are transplanting more people that 
are in critical need.
    Mr. Cloud. I would just, you know, continue to point out, 
there's some people--some organizations obviously able to do--
make great gains very quickly, and urgency is of the essence. 
So thank you.
    I yield back, Chairman.
    Mr. Ferreria. I couldn't agree with you more, Congressman.
    Mr. Miller. Ranking Member Cloud?
    Mr. Krishnamoorthi. I'm going to have to now go to the next 
member.
    Chairwoman Maloney, you are recognized for five minutes.
    Mrs. Maloney. Thank you.
    Thank you so much, Chairman Krishnamoorthi and also Ranking 
Member Cloud, for your leadership on this very important 
bipartisan issue.
    Mr. Wadsworth, I commend you and other OPO leaders who have 
announced you are leaving the Association of Organ Procurement 
Organizations to join a new innovation cohort committed to data 
transparency, collaboration on best practices, and health 
equity. These OPOs are doing the right thing by putting 
patients first. Among them is LiveOnNY, which covers my home 
district.
    Mr. Wadsworth, do you believe that increased data sharing 
through the innovation cohort will help improve their 
performance?
    Mr. Wadsworth. Absolutely, yes.
    Mrs. Maloney. The innovation cohort has committed to 
publicly releasing a vast trove of valuable data, including 
detailed referral data about potential donors, OPO financials, 
and OPO staffing models. As a result, researchers in the public 
will finally have insight into the inner workings of OPOs.
    Mr. Miller, will you commit that the Association of Organ 
Procurement Organizations will follow the innovation cohort and 
share the same data from all its OPO members?
    Mr. Miller. Congresswoman, I'm not familiar with the data 
you're talking about, but we have
    [inaudible] internal where we are--we've revamped our 
accreditation program to focus on data-driven performance 
improvement, and that is what we're committed to. It's similar 
to what the cohort is speaking about. I can't commit right now 
to providing that to the public, but that is something we will 
consider. We will take your request under consideration.
    Mrs. Maloney. Well, we'll be following up with you. Because 
OPOs provide a public service, their data should be public. 
UNOS, the entity that manages the U.S. transplant list under 
contract with the government, stores valuable OPO data, but 
UNOS prohibits OPOs from sharing performance data with the 
public and only allows some data to be distributed publicly.
    Mr. Miller, would you help OPOs to perform better--or don't 
you think it would help, that they would perform better, if 
UNOS made more of its data public?
    Mr. Miller. I can't speak to the UNOS data, Madam 
Chairwoman. What I can say is that we'll commit to following up 
with you on our transparency efforts. So I can't speak on 
behalf of another organization.
    Mrs. Maloney. OK. Let's now turn to you, Dr. Karp. As a 
transplant surgeon, you need the best and most accurate 
information about an organ that's going to be put into a 
patient. And I was horrified to hear about a case in which an 
OPO incorrectly identified a donor's blood type, affecting two 
organs. Tragically, one transplant recipient died and the other 
one was gravely, gravely hurt.
    Should the government take a more improved look, a closer 
look at improving the technology used for tracking donations 
and transplants?
    Dr. Karp. Yes, absolutely.
    Mrs. Maloney. It's awful to consider that someone so close 
to a life-saving operation can have their procedure delayed, 
become injured or worse because of lack of care by an OPO, 
which we heard from our prior witnesses.
    My time has expired, and I yield back to the chairman and 
ranking member on this very excellent hearing. Thank you for 
including me.
    Mr. Krishnamoorthi. Thank you, Chairwoman.
    Is Congressman Clyde with us?
    He may have stepped away for a moment, in which case, let 
me recognize Congresswoman Cori Bush for five minutes.
    Ms. Bush. OK. Thank you. I'm having a little bit of a small 
issue. OK. There we go.
    All right. Thank you so much, Mr. Chairman, for convening 
this important hearing, and to the ranking member as well. St. 
Louis and I absolutely thank you.
    So as a former transplant nurse myself, kidney/liver and 
kidney/pancreas, I personally treated and counseled patients 
suffering through chronic and severe illnesses. Black and Brown 
patients are more likely to suffer from illnesses like kidney 
failure and less likely to get an organ transplant. For them, 
the promise of receiving an organ is too often delayed or 
denied because there aren't enough organs available.
    I've watched this system fail dying patients. Time and time 
again, I watched this. I've watched the system fail young 
people, older adults, and far too many Black and Brown people. 
Our failing organ donation system is a death sentence for 
thousands.
    My time treating transplant patients has stayed with me, 
and I cannot overstate the urgency of this issue. We must do 
everything in our power to fix this system.
    In St. Louis, nearly 1,100 people are currently waiting for 
a life-saving organ transplant that may never come. Each OPO is 
solely responsible in its region for obtaining organs for 
transplant from deceased donors and facilitating transplants. 
Each OPO is a monopoly. If the OPO fails at securing organs, no 
one else can provide this service. Like, that's the thing, no 
one else can do this work. It's so critical that OPOs pursue 
every potential organ. They must invest resources to build 
relationships with hospitals and communities.
    Mr. Wadsworth, in a letter to this subcommittee, AOPO 
complained it was unrealistic to pursue 100 percent of organs. 
Yes or no, if OPOs invest in staff and built the right 
relationships with hospitals, shouldn't that be their goal?
    Mr. Wadsworth. Yes.
    Ms. Bush. Thank you. I agree.
    I would rather hear solutions from OPOs than excuses. It's 
outrageous that providers would make referrals for potential 
donor patients to an OPO, and yet the OPO will not go to the 
hospital to assess the patient and speak with the patient's 
family about donation. Like, showing up seems like it would be 
the bear minimum.
    I've had patients who have waited for years to go on 
donation lists. They turned their lives upside down to make 
dialysis appointments, to be there three days a week, altering 
their diets, fell into depression, and were traumatized because 
OPOs refused to show up.
    Dr. Karp, AOPO's own documents show that one OPO only 
approached 11 percent of the families of potential donors 
referred by hospitals. That means they ignored nearly 90 
percent of those families? That's a shocking gap between 
referrals and followup.
    So if OPOs approached more families of potential donors, do 
you think it would increase the number of organ donations? Yes 
or no.
    Dr. Karp. I'm proud to say that Vanderbilt is the largest 
donor hospital in the country, and we have OPO staff onsite 24/
7, and it makes a huge difference.
    Ms. Bush. Huge difference; oh, my gosh.
    How would the lives of patients on organ donation waiting 
lists, especially patients of color, improve if OPOs were 
required to operate under these higher standards?
    Dr. Karp. Everybody wins.
    Ms. Bush. Everybody wins. Thank you.
    Mr. Miller, many of your OPOs keep millions of dollars 
sitting around. Based on recent tax filings, OneLegacy in Los 
Angeles has over $110 million in net assets and in a related 
foundation. Mr. Miller, instead of sitting on massive piles of 
cash, shouldn't OPOs be deploying that money to train staff on 
outreach, best practices, and ensuring staffing is sufficient 
to visit potential donor families?
    Mr. Miller. Congresswoman, what I would respond by saying 
is those decisions are made with the board of OneLegacy. I 
can't speak to their decisions on what they do. I can only 
speak to what we at AOPO would do.
    Ms. Bush. OK. All right. This issue is literally a matter 
of life or death. I came to Congress to save lives because too 
many of my neighbors, my loved ones, and my community members 
are dying because of broken systems and broken processes, and 
it's somebody else's fault and it's somebody else's job, and in 
between that, people actually die, like, lives are lost; all 
reasons that could be prevented. We must not wait to ensure 
that we're doing the absolute most to protect and save lives.
    Thank you, and I yield back, says this nurse.
    Mr. Krishnamoorthi. Thank you, Congresswoman Bush.
    I'd like to now recognize Congressman Clyde for five 
minutes.
    Mr. Clyde. Thank you.
    Thank you, Mr. Chairman. Thank you for holding this very 
important hearing. And I want to thank all the witnesses who 
are here today to discuss this very important issue. I'm sure 
we all recognize the goal of the OPOs is to save lives. Life is 
a very precious thing, and I'm sure everyone here would agree 
with that.
    I just wish there was as much support for saving the lives 
of unborn children as there was for everyone who has already 
been born. Whether it's the life of someone who has a Social 
Security number already or won't get one for 6 to 9 more 
months. Life is just precious. And I certainly want everyone 
who needs a life-saving transplant to get one and to get one in 
a timely manner. I think that's very, very important, and I 
think that's all a goal--or that's a goal that we all share.
    You know, I am a little disappointed that we're discussing 
race as a factor in organ transplant. We're all one race, in my 
opinion. Color makes no difference to me. We're the human race 
and, to me, the interjection of race into this discussion is 
very concerning. Discrimination based on race was outlawed 
almost 60 years ago through the Civil Rights Act of 1964.
    Now, I'm not a medical doctor. I have very little knowledge 
of medicine. But last year, there was an article that came out 
in LifeSource, and it says, Does My Race &
    Ethnicity Matter in Organ Donation?
    And so my question here is for Dr. Karp. In your 
experience, would you agree that a donor's organs are more 
likely to be a clinical match for a recipient of the same 
ethnicity? Could you comment on that? Is that actually a factor 
or not? I mean, we're all human beings. We're all--you know, 
have similar bodies.
    Dr. Karp. Yes. So there definitely are certain HLA types 
that are more common that is race based, so the answer to that 
question is yes.
    Mr. Clyde. OK. All right. And so if you have more of one 
particular race--more donations of one particular race then, 
naturally, you would have more actual matches of that 
particular race. Is that--would--is that correct?
    Dr. Karp. That would tend to be the case.
    Mr. Clyde. OK. All right. All right. OK. That's just a 
question that I wanted to clear up here. So that's all I have.
    And I yield back, Mr. Chairman.
    Mr. Krishnamoorthi. Thank you, Congressman Clyde.
    I'd like to now recognize Congressman Johnson, also from 
Georgia, for five minutes.
    Congressman Johnson, are you still with us?
    OK. Maybe Mr. Johnson stepped away.
    I think I should be recognizing Mr. DeSaulnier, Congressman 
DeSaulnier for five minutes.
    Mr. DeSaulnier. Thank you, Mr. Chairman. I want to thank 
you and the ranking member for this hearing.
    I want to thank the whistleblowers and the advocates for 
better performance.
    Mr. Miller, it seems clear from the evidence that, in the 
instance of Watergate, there were people who said that the 
coverup was worse than the crime. It's hard to believe that in 
this instance. But it seems as if you moved in a direction to 
increase lobbying, as the chairman indicated in his opening 
comments, when the Congress started to provide more interest in 
oversight and deficiencies.
    Mr. Chairman, do you hear me OK?
    Mr. Miller. Congressman----
    Mr. Krishnamoorthi. I can hear you now.
    Mr. DeSaulnier. OK. Sorry. Let me just try to quickly--Mr. 
Miller, the questions are directed at you.
    And, again, I want to thank the chairman and the ranking 
member and all the people who have come forward to push for 
greater performance standards on the OPOs.
    And I'll tell you, this is my first experience. When I was 
in the state senate in California, I carried a bill for a 
constituent whose daughter couldn't get a transplant because of 
her ethnicity.
    It provided for paid leave for folks who are getting 
transplants and was signed by Governor Schwarzenegger, with 
Steve Jobs in attendance. It was a celebration, but it left me 
with a very bad taste in my mouth because it became clear to me 
that many of the people in this industry were less interested 
in saving lives than in making money.
    Mr. Miller, a question of lobbying, inappropriate lobbying, 
particularly the timing. You changed the tax status of your 
organization in 2020 when it was becoming evident that the 
Congress was pursuing more oversight, and it seems as if you 
were raising membership fees in order to pay for that. Is that 
true?
    Mr. Miller. No, Congressman. We were--when I was hired 14 
months ago, part of what I was focused on, and when I--during 
the hiring process was increasing advocacy. That was what the 
search committee made clear to me.
    But as part of--when you spoke about this change to its 
501(c)(6), when I came on board, I wanted to ensure that we had 
best in practices government's practices. And so I hired an 
outside law firm that specializes in nonprofit corporate 
governance, and they have been doing the review, and that 
review continues ongoing.
    And as part of their review, they noted that a 501(c)(6) is 
more appropriate for the activities at AOPO will--wants to 
undertake. So that is what drove that decision. And to be 
clear, when this process is over, we will still have a 
501(c)(3), which will be a foundation, and a 501(c)(6). That's 
a common practice among trade associations and membership 
associations.
    Mr. DeSaulnier. So just let the record show that Mr. 
Miller, in his answer, did not answer the question about 
raising more fees. It seems like an amazing coincidence that 
while you were doing this, you were raising more money at the 
same time we were looking at more oversight. Not inappropriate 
that you want to advocate, but I think very telling that you're 
raising funds to, it appears to me, to protect CEOs, for 
instance, that were making almost $600,000 a year, even though 
they were poor-performing OPOs.
    Mr. Ferreria, may I ask you a question? Is it true that, 
directly or individually, you personally have an ownership 
interest in Origin Biologics?
    Mr. Ferreria. Me personally, that is incorrect, 
Congressman.
    Mr. DeSaulnier. Do you have any prospective conflict of 
interest with Origin Biologics or any other organization?
    Mr. Ferreria. I do not, not that I'm aware of, Congressman.
    Mr. DeSaulnier. OK. Appreciate that.
    Mr. Chairman, thank you again for your oversight. I 
appreciate the witnesses' answers. And I look forward to you 
continuing, along with the ranking member, to provide rigorous 
oversight so that people can live longer and better lives. 
Thank you so much. I yield back.
    Mr. Krishnamoorthi. Thank you, Mr. DeSaulnier. I'm going to 
use your 30 seconds left and ask Mr. Wadsworth a question.
    Do you agree with me that lobbying by AOPO has increased 
fivefold over just the past few years?
    Mr. Wadsworth. I'm not familiar. I mean, I know they've 
increased the amount of money that they've spent toward it, but 
I'm not familiar with what the lobbying efforts have been over 
that period of time.
    Mr. Krishnamoorthi. It's gone up five times, to $1.5 
million as an industry.
    And, Mr. Wadsworth, I want to just say one other thing, 
which is, isn't it true that the reason why the number of 
organs transplanted each year over the past several years is 
not because of an improved performance but because of the 
national opioid epidemic?
    Mr. Wadsworth. I believe so, yes.
    Mr. Krishnamoorthi. So more people have died because of the 
opioid epidemic, leading to more organs being available for 
transplantation. It's not because of improved performance.
    Now, let's go to Congressman Johnson. You are recognized 
for five minutes.
    Mr. Johnson. Thank you, Mr. Chairman, and thank you for 
holding this very important hearing today. And I'm proud to be 
a part of this subcommittee, as it delves into issues of life 
and death such as this.
    People of color face disproportionate need for organ 
transplantation, and they also face disproportionate challenges 
at each stage of the organ transplantation process, and they 
suffer worse health outcomes as a result.
    Black Americans are three times more likely than White 
Americans to have a kidney failure. Despite this, Black kidney 
patients are less likely to be identified as transplant 
candidates, less likely to be put on a wait list, and less 
likely to receive a transplant. And even when Black Americans 
do receive a transplant, they receive lower quality kidneys.
    Ms. Cryer, studies show significant bias in the medical 
field toward Black patients when determining whether they are a 
suitable candidate for transplant. In your personal experience 
and in your work in patient advocacy, what kinds of 
discrepancies have you seen in how patients of color are 
assessed for potential organ transplant?
    Ms. Cryer. Thank you so much for that question, Mr. 
Johnson. As you are well aware, there are multiple studies in 
peer review journals that speak to the fact that not only 
African Americans, Hispanics, Native Americans, Asian and 
Pacific Islanders experience racial bias and setbacks in every 
part of the transplant system, whether it's being placed on the 
donor list. Certainly, families are not approached 
appropriately in many cases by OPO staff when they do show up.
    And I'll speak particularly to that point and what I'd like 
to see moving forward in the OPO reform. We would like to see 
investments in languages that are spoken by the community. 
Educational resources should be, as required by law, for those 
with English--limited English proficiency. They should be in 
the languages spoken by the community. They should be hiring 
diverse staff to have those most crucial conversations with 
families. The data shows, and certainly experience and 
commonsense shows as well, that having people of color 
approaching families of color result in more donations. 
Families want to donate.
    In my time on staff at UNOS, certainly, speaking to groups 
in churches and baseball stadiums and everywhere in between 
about organ donation, increasing the trust of communities, the 
awareness of the effects of organ donation and transplantation 
for people within their own communities, for friends and 
neighbors.
    When you work with organizations in Black fraternities, in 
sororities, and organizations like Links for Life, which 
created an organ donation community-based program, those are 
the types of investments that high-practicing, high-performing, 
best-practicing OPOs should be investing in to reduce the 
number of patients who are left waiting or, unfortunately, die 
waiting for a transplant. And those are the----
    Mr. Johnson. OK. Thank you.
    Ms. Cryer. Thank you.
    Mr. Johnson. This past year, I had a meeting with an OPO in 
my state, LifeLink of Georgia, which is under investigation. In 
our conversations, they asserted that Black Americans had equal 
access to organs and experienced no disparities in the 
transplantation process, something that we know to be 
categorically false. OPOs are failing people of color at every 
step of this process, and the numbers show it.
    Data from HHS indicates that, while White people on the 
wait list have 50 percent--or have a 50 percent chance of 
getting a transplant each year, the number is closer to 25 
percent for Black people.
    Ms. Cryer, apart from clear physical costs, what is the 
emotional toll that the waiting for organ transplant takes on 
patients and also on their families?
    Ms. Cryer. The emotional cost is huge. My parents waited 
outside my door in intensive care for weeks, for months, 
thinking of losing their oldest daughter. I talk now to 
patients who are in similar situations. The rates of anxiety, 
of depression are compa---that are faced by everyone waiting on 
the transplant list are confounded by the feeling that the 
system does not work for us, by never having met an organ 
procurement staff. For those who are transplant recipients but 
are then again in the position of waiting for an organ, never 
asked to be on a speaker's bureau to talk to their community to 
be leveraged and to be asked to be part of the solution.
    It is doubly devastating to not only have a life-
threatening condition, but to believe there is no one on your 
side helping you to succeed and move on to successful 
transplant.
    Mr. Johnson. Thank you, Ms. Cryer.
    And thank you, Mr. Chairman. I yield back.
    Mr. Krishnamoorthi. Thank you, Congressman Johnson.
    Now I just seek unanimous consent to introduce a couple 
statements for the record, one from the National Council on 
Disability and one from the American Society of Nephrology.
    Without objection, so entered.
    Mr. Krishnamoorthi. Now I'd like to recognize Congresswoman 
Ayanna Pressley for five minutes.
    Ms. Pressley. Thank you, Mr. Chairman, for convening 
today's hearing on the need to reform our country's organ 
transplant system.
    The facts are certainly damning, and the testimony from 
today's first panel illustrates the heartache, the distress, 
and the consequences of inaction.
    In my district, the Massachusetts Seventh, we have six 
transplant centers, and the majority of my constituents are 
people of color. We must confront the racial injustices in our 
organ transplantation system as a matter of life and death, 
because it quite literally is. So, in the spirit of our former 
chairman, Elijah Cummings, it is my duty to remain in efficient 
and effective pursuit of the truth, and so I'll dive right in.
    Mr. Wadsworth, the American Journal of Public Health 
published a study finding, quote, the odds that a family of a 
White patient was approached for donation were nearly twice 
those for a family of an African American, unquote. Mr. 
Wadsworth, when a hospital refers a potential donor to an OPO, 
does the OPO report to anyone whether they approach that 
potential donor's family about donation and the conversations 
they have?
    Mr. Wadsworth. They would report to the administrator on 
call likely, oversee the dispatch of that staff member to go 
have that conversation and guide whether they're ready to have 
that conversation or not, hopefully in collaboration with the 
hospital.
    Ms. Pressley. Is it true that OPOs likely have that data 
which would show how well they engage with communities of 
color? I'm a firm believer in that which gets measured gets 
done, so that data collection and that transparency is so 
important.
    Mr. Wadsworth. Yes, absolutely. That data is easily pulled 
from our EMR.
    Ms. Pressley. Well, definitely, I think we need greater 
transparency to know when OPOs are disregarding potential 
donors simply because of their race. That will tell the story.
    So, Ms. Cryer, could you tell us about your personal 
experience with OPOs failing to approach Black families?
    Ms. Cryer. Yes, absolutely. I think the issue that you just 
raised is the reason why we wanted to have the rules changed to 
transparent, objective, verifiable, publicly available data, 
because before, they could have just said that, you know, there 
were no patients of color that they approached and given 
themselves perfect marks for reporting everyone.
    Moving forward, that can't happen, and that's what we want 
to keep a spotlight. There will be more objective data and 
people--OPOs measured based on the entire donor potential 
objectively found from hospital records and ICD-10 codes and 
death certificates, CDC data, for example.
    And so we will be better able to address disparity and 
inequities in transplant with--even better than we have now and 
fewer anecdotes and, well, in my case, personal observations 
over close to a quarter of a century of working in this 
community and hearing directly from families who wanted to 
donate were not approached, seeing missed calls and missed 
staff not being onsite reported from my OPO colleagues as I 
visited them around the country. And so we know this to be 
true. Now we have an opportunity to have more objective, 
publicly verifiable data for us all know the extent of the 
problem and to be able to act.
    Ms. Pressley. That's right. Thank you.
    And, Mr. Miller, why are Black people being routinely 
ignored by OPOs when it comes to donating organs?
    Mr. Miller. Congresswoman, I can't speak to the specific 
case of Ms. Cryer or specifics. What I will tell you is what 
we're working on. And I would agree with Ms. Cryer, we need to 
get better. The system needs to get better. And what we have 
done is convened a
    [inaudible] diversity, equity, and inclusion task force. 
And what they are--they are finalizing their recommendations, 
and part of that is setting standards and setting metrics of 
how do we look at OPOs and how can we as AOPO and the OPO 
community get better in our outreach to communities of color.
    Ms. Pressley. All right. Reclaiming my time.
    There's really just--there's not an answer because there's 
no justifiable answer for this discrimination. The San 
Francisco OPO has made significant progress in including the 
Black community in the organ donation and transplant process, 
and the OPO there is led by Janice Whaley.
    In fact, she's the first Black woman CEO of an OPO who 
rejected the racist tropes that communities of color wouldn't 
donate, and in a single year, donations rates went up by 29 
percent, including an increase of 95 percent among Asian 
donors, and 70 percent among Black donors, and 40 percent among 
Latinx donors.
    Mr. Wadsworth, when OPOs invest the proper resources into 
ensuring all communities are included in the organ donation 
process, have they seen results?
    Mr. Wadsworth. Absolutely, yes.
    Ms. Pressley. So some OPOs objected to the CMS rule because 
it stopped them, in my opinion, from using racist metrics to 
obscure failures in serving communities of color. Let's look at 
exhibit B, showing comments from several OPOs.
    L.A.'s failing OPO, OneLegacy--I'm not sure if you can see 
that--at the bottom it blames the diverse communities in L.A. 
for its failure to serve them. The director suggested it was, 
quote, racially discriminatory, unquote, if expectations were 
not lowered because they serve a diverse population.
    Mr. Miller, did you subject these AOPO members to 
discipline for that irrational, irresponsible, and biased 
approach? Yes or no.
    Mr. Miller. Congresswoman, this is the first I'm seeing 
this.
    Ms. Pressley. OK. Will--and what's your reaction? Will they 
be disciplined for that irrational, irresponsible, and biased 
response?
    Mr. Miller. I would have to--need time to review this 
document. As I said, this is the first time I'm seeing this.
    Ms. Pressley. OK. I'll reclaim my time then. OK.
    Well, look, in the data that is before you in exhibit C, in 
fact, Mr. Miller, we see AOPO supported the efforts of its 
members to risk adjust for race, which is unacceptable. CMS 
rejected OPO's racist request to lower expectations for OPOs 
serving diverse communities stating that, quote, we are not 
aware of a biological reason why race, as an independent 
factor, would affect the decision to be an organ donor or the 
number of organs transplanted, unquote.
    Mr. Miller, will AOPO commit today to stop advocating for 
racial risk adjustments? Yes or no.
    Mr. Miller. Yes, Congresswoman.
    Ms. Pressley. Well, I think today's hearing shows how we 
have to be intentional in rooting out racist methodologies in 
our organ procurement process and throughout healthcare. It is 
exactly why, in partnership with Representative Barbara Lee, 
I've introduced the Antiracism and Public Health Act, in order 
to confront racism and public health head on. It declares 
racism a public health crisis, because it is, and it helps us 
to put an end to these disparities, like the ones that we've 
seen play out in our organ transplantation system.
    Thank you, and I yield.
    Mr. Krishnamoorthi. Thank you, Congresswoman.
    Now I'd like to recognize Katie Porter, Congresswoman Katie 
Porter, and thank her for her incredible partnership with the 
committee on this very, very important issue.
    Ms. Porter. Thank you very much, Mr. Chair.
    This hearing is about saving lives, not partisan politics. 
We're here because organ procurement organizations, called 
OPOs, are trusted by the government and by the American people 
to honor the wishes of donors and save the lives of patients.
    Mr. Miller, I want to talk to you about the conversion rate 
metric that OPOs have used to report their work to the 
government. This is a rate of how, quote, successful, quote, 
OPOs are in transplanting those organs that have been available 
from eligible donors. Is that right?
    Mr. Krishnamoorthi. You need to unmute.
    Mr. Miller. Sorry. It took me a second to unmute.
    Congresswoman, in my time, I'm not aware of the conversion 
rate. Obviously, that's the current metrics. In my time, we've 
been focused on the new metrics. So you can----
    Ms. Porter. You don't understand the metrics that were in 
use until a couple weeks ago?
    Mr. Miller. They are in use. What I'm saying is I don't 
have a deep understanding of them. So----
    Ms. Porter. You have a shallow understanding of how we 
measure whether or not we're saving lives or not?
    Mr. Miller. No, I'm not saying that. I don't have a deep 
understanding, is what I'm saying.
    Ms. Porter. OK. Well, let's find out what your 
understanding is, because you're compensated to do this job. 
The way this works is there is an numerator in the question--in 
the conversion rate metric. There's an numerator that the 
number of donors from whom the OPO actually recovers organs, 
and then there's a denominator, which is eligible deaths. So 
let's say that OPO ``A'' was able to get 60 organs out of 80 
eligible deaths.
    Mr. Miller. OK.
    Ms. Porter. OK?
    Mr. Miller. Yep.
    Ms. Porter. Of this, this comes to 75 percent. You 
following the math so far?
    Mr. Miller. I'm following your math, Congresswoman.
    Ms. Porter. Great. Now, let's say that OPO ``B'' was able 
to get 70 donors out of 100 eligible deaths.
    Mr. Miller. Right.
    Ms. Porter. Can you reduce this to a percentage for me, 70 
over 100?
    Mr. Miller. Seventy percent.
    Ms. Porter. Seventy percent. All right. So under this 
conversion rate metric, which has been in effect, then it looks 
to me like this is the more successful OPO, OPO ``A.'' They 
have a higher conversion rate. They would be rated as more 
successful.
    Mr. Miller. Correct.
    Ms. Porter. Has there been, in the prior rules, a standard 
definition of what counts as an eligible death?
    Mr. Miller. It's my understanding, no, there has not, and 
that is part of the new----
    Ms. Porter. So if an OPO didn't want to count certain 
eligible deaths, certain possible donors, they didn't have to. 
They could essentially define eligible deaths for themselves. 
Is that correct?
    Mr. Miller. That is my understanding, Congresswoman.
    Ms. Porter. And, Mr. Miller, that means they might miss out 
on another 10 donors. I mean, this OPO went after 20 more 
people, and as a result, got 10 more donors. But under this 
prior metric, they look like they're performing worse. Why 
would you ever defend this kind of metric?
    Mr. Miller. I have not defended that metric. I----
    Ms. Porter. Reclaiming my time.
    Mr. Miller, I don't want to humiliate you today by reading 
your emails to my office into the record in which you argued 
against the new metric. Would you like to restate whether or 
not you lobbied for or against the new metric? Did you lobby 
against the new metric? Yes or no. You are--yes or no.
    Mr. Miller. We lobbied for improvements to the new metrics. 
We were not lobbying against the new metrics. We were simply--
Congresswoman, you--what you're saying is correct, we want 
common definitions. You are completely correct, and that is----
    Ms. Porter. Right. So you want a common definition, that's 
what the new rules deliver, but you didn't like the new rules 
because you had other--apparently other issues with it. My 
point here is that you were defending a system in which OPOs--
you were operating under a system in which OPO ``B'' looks like 
they're much worse than OPO ``A'', but in reality, it could 
just be the case that OPO ``B'' is going after every possible 
donor, regardless of race, regardless of whether it's hard, 
regardless of whether they might not get turned down, 
regardless of whether or not it might be easy. They are trying 
to honor the wish of every donor and save every life.
    OPO ``A'', on the other hand, they only had 80 eligible 
deaths because, say, maybe the CEO of that OPO wanted to go on 
vacation and they took the OPO's private jet, which is supposed 
to be used for transporting organs, and therefore that jet 
wasn't available to go pick up the organs from these other 
deaths. Could that have happened under this scenario?
    Mr. Miller. That, I'm not aware of, Congresswoman. I can't 
respond to that specific allegation.
    Ms. Porter. Well, that is an actual--that literally 
happened. An OPO CEO went literally on vacation. This is not a 
hypothetical story with the jet. They literally jetted off to 
vacation and left donors who were unable to honor others with 
the gift of life and left patients to die because they weren't 
pursuing every possible eligible death, every possible donor. 
That's what actually happened.
    And you have fought the changes in these rules every step 
of the way. We have the correspondence from our office, and I 
would be happy to introduce it into the record.
    Mr. Wadsworth, as an OPO CEO, would you say that these new 
metrics recently set into law are more accurate, that they 
address the problem that I've identified here?
    Mr. Wadsworth. Would, yes.
    Ms. Porter. And are these realistic metrics that an OPO, if 
they're doing their job, could achieve?
    Mr. Wadsworth. Absolutely, yes.
    Ms. Porter. And will these new metrics increase the number 
of organs transplanted annually and encourage OPOs to go after 
every possible organ, to take every opportunity to honor what 
donors wanted and to help save patients' lives?
    Mr. Wadsworth. Absolutely, which is why I think it's so 
important to expedite this and implement it right way in terms 
of the----
    Ms. Porter. So glad you asked that. Mr. Wadsworth, how 
quickly could you implement this new system?
    Mr. Wadsworth. I could get to work right away, right now.
    Ms. Porter. Tomorrow?
    Mr. Wadsworth. Yes, absolutely.
    Ms. Porter. That is so good to hear, Mr. Wadsworth, because 
tomorrow, somebody is at risk of dying in this country, 
somebody will die in this country while they're waiting for an 
organ. Thousands of patients waiting on a life-saving organ 
cannot wait while the Association of Organ Procurement 
Organizations lobbies and tries to stop rules and procedures 
just to make it simply clear whether an OPO is doing the life-
saving work of retrieving organs and putting them into patients 
in need.
    Thank you so much. I yield back.
    Mr. Krishnamoorthi. Thank you so much, Congresswoman 
Porter.
    We are now--have concluded with the questions. In closing, 
I'd like to thank our panelists for their remarks. I want to 
commend my colleagues on both sides for participating on this 
important conversation. I want to thank Ranking Member Cloud 
for his partnership and, of course, as I said, Congresswoman 
Porter, for her partnership with me in furthering this 
investigation.
    I'll just close with this. In the Project On Government 
Oversight, they're called POGO, they quoted a set of meetings 
that members of AOPO recently had, basically saying they were 
going to continue to slow roll and prevent fulsome cooperation 
with this investigation. And they said, quote/unquote, 
Krishnamoorthi would go away.
    I want to make it very clear to AOPO, as well as all the 
OPOs, I'm not going away, and we are not going away. The issues 
here are about life and death, and because of that, you can 
expect more and more inquiries from us the more and more you 
obstruct our investigation. We are going to pursue every avenue 
to implement this rule even faster than what the Biden 
administration has proposed, and we are going to try to reward 
those OPOs that actually try to fulfill their mission and try 
to save lives.
    And so please convey this to all your OPO colleagues: This 
committee is on the case and we're not going away, we are 
actually going to accelerate our efforts, and we're going to 
pursue this as far as we can. Thank you so much.
    With that and, without objection, all members will have 
five legislative days within which to submit additional written 
questions for the witnesses to the chair, namely me, which will 
be forwarded to the witnesses for their response. I ask our 
witnesses to please respond as promptly as you are able.
    This meeting is adjourned. Thank you.
    [Whereupon, at 1:06 p.m., the subcommittee was adjourned.]

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