There are more than 100,000 people in the United
States waiting for an organ transplant as of October 2022. Roughly 90,000 of those people are specifically
waiting for a kidney. I was born type one diabetic. Whole life dealt with that. There was always the word transplant thrown
around, but I never thought it would be a possibility. It can be a long wait because of the organ
shortage. Only a little more than 50% of people waiting for
an organ will receive one within five years. What's extraordinary about this problem is that
kidneys can come from a living donor. And I even forget that I donated my kidney. Why wouldn't you? That's what I don't understand, is why people
don't do it. If more people do it, then more people will see
that it's easy. But the majority of organs are donated from
deceased donors. Even though you know for a fact that you're not
responsible for the death of that person, someone died for me. And you start questioning things, like why? Well, I think a lot of people think about organ
transplants and they think, oh, that's a problem for older folks. The donors are almost always young. If you increase the number of transplants that we
do, you can have a much more productive workforce. So it's a pocketbook issue for all of us. It's weird to say the surgery saved me money. The biggest equity challenge in transplant is the
same as it is for everyone in American health care. It's getting access to the hospital in the
first place. Even though we're all fascinated by transplant,
the ultimate goal is to get rid of it. So how does the organ donation system work in the
United States, and why is there such a scarcity of organs? The Organ Procurement and Transplantation
Network, or OPTN, is a public-private partnership that connects many
organizations across the country that are involved in the organ transplant process. The United Network for Organ Sharing, or UNOS,
manages the system. CNBC spoke with Brian Shepard before he stepped
down as UNOS CEO in September 2022. You know, this is really the engine that drives
organ donation and transplant in the United States. We are a nonprofit in Virginia that holds
a government contract that puts us sort of in the middle of all the entities in donation and
transplant that participate in the process. One of UNOS's responsibilities is to manage the
list of candidates waiting for a transplant. We call it wait list and people think about it
that way, but it really is more dynamic and a little more complicated than that. We've created that computer algorithm through
dozens of committees of doctors and patients and other professionals from across the country. We have a committee for kidney, we have a
committee for liver, we have a committee for heart and lung and pancreas. It is different for every
organ. Deceased donors must die under very specific
circumstances. Typically, this means the donor died in the
hospital while on a ventilator and there was still blood and oxygen flowing through the organs. That's when the organ procurement organization,
or OPO, steps in. They are the people who are trained to come and
make the approach. Once the treating team has declared deaths, there
are a bunch of rules that they use, primarily biology. Can't put a big heart in a little person
. Can't put the wrong blood type liver in a person
with a different blood type. The body won't accept it. I'm Patrick McGlone. I got a dual kidney and
pancreas transplant in June of 2021. I know for a fact, in my case, someone had to die
in order for me to receive these organs, and there's just nothing they can tell you that will
prepare you for it. Patrick was put on the waiting list to receive
both a kidney and a pancreas when he first started dialysis in 2019. I listed and even the hospitals were like, This
might happen very quick. So be prepared, is basically what they told me. Patrick was on the waiting list for about 18
months, which is less of a wait than average. When you're listed for two organs, so kidney and
pancreas, it's actually a much shorter list than a kidney only. Because the waitlist is so long for a kidney,
loved ones of people who need a transplant may decide to donate. I decided to donate my kidney to my mentor/family
friend. I would consider him my uncle. And I was not a match to my recipient, but I was
given the option of something called a paired kidney exchange that bumps my person, my loved
one up the list, and helping another person at the same time. I donated my kidney in August of 2020, and as of
October 2022, my recipient has still not gotten his kidney u
nfortunately. Once you get to the waiting list, the waiting list
is a pretty fair place to be, and the data on our equity tracker will show that. There's a hidden access point or rationing point
that goes on that we don't see. And what that is, is whether you get in the
hospital in the first place. In the United States, insurance plans can be
vastly different from person to person. An estimated 41 million American adults were not
adequately insured in the first half of 2020, according to a Commonwealth Fund report. Health care costs is a constant issue, right? Most transplant centers even have, they tell you,
if you can afford it, you call us. They pay for those things for patients that can't
afford it. You have to sign documents with a financial
coordinator prior to getting listed that they're saying, this is your estimated out-of-pocket
based upon the insurance you have right now. And so you have to sign the documents or you are
allowed to sign up for an assistance program. And I remember Mount Sinai specifically saying
never skip your medication because you cannot afford it. You call us and we will do what is
necessary to make sure you get it. Costs vary based on the organ being transplanted. The average total of billed charges for a kidney
and pancreas transplant like Patrick received are around $713,000. Those are the charges that initially get processed
through the system. It is not necessarily what what the insurer might
pay or what an individual might pay out of pocket. Organ transplants are really unique in
terms of needing that metric of another half of year post care, in terms of what's being done and
the amount of costs associated with that. Patients may have to pay for things such as
rehabilitation services, testing and anti-rejection drugs, which can frequently add up
to thousands of dollars a month. For Patrick, treating his diabetes was actually
more expensive than getting his transplant. He's now no longer an insulin-dependent diabetic
. Diabetes care, between the supplies and the
constant visits and the lab work and the special diets and all the other things, even with good
insurance, there's a lot of out-of-pocket costs. Living donor surgeries are covered by the
recipient's insurance. I didn't have to pay anything. I was reimbursed for my stay at a hotel after. I was reimbursed for the gas that I used to drive
to the hospital. My parking was validated. Katharine had a smooth experience, but there can
be expenses that donor's insurance must cover, such as any health concerns that arise during the
evaluation process, after care and post surgery complications. There are certain programs that
can assist living donors with out-of-pocket costs. If I had any issues, I would contact the
transplant team and they would get me to see a doctor all free of charge, I didn't pull my
insurance out at a single time. There are other issues with the organ transplant
system beyond affordability. People of color, people of lower socioeconomic
status and women receive transplants at a lower rate than the general population and are also
more likely to wait longer for an organ than other patients with similar medical issues. For example, even though black people in the
United States are three times more likely to experience kidney failure than white people, they
are less likely to receive a kidney transplant. These disparities arise from a very complicated
set of issues, but one reason is how race is factored into the medical decision making
process. There's a calculation that measures how well
someone's kidneys are working called the estimated GFR. That's the test that determines if a patient
will receive a diagnosis of end stage renal disease, which qualifies someone for a
transplant. When I got a low EGFR and got the ESRD, someone
who was African American who took my same blood test, got the same results, their kidney function
would have been deemed better and they may not have qualified for the transplant list. UNOS declared in July 2022 that the transplant
hospitals cannot use race-based calculations to determine kidney function. UNOS directly addresses this, like they don't
dance around it. So over the years, we have found different
inequities and been able to address some of them. For example, in kidney, it used to really be
primarily about when you were registered for a transplant. And as we realized that it was taking
some candidates longer to get from the beginning of dialysis to a transplant hospital through an
evaluation and onto the waitlist, some candidates just had better health information, had better
health coverage, had better access. And so the better date, to be fair to all
patients, was when they started dialysis, not when they got to the waitlist. And when we made that,
that reduced some racial inequity in the system. In an attempt to match organs perfectly, we
created a very sophisticated algorithm for histological matching of organs. And in the process, by matching so perfectly, we
created an inadvertent inequality. We sort of backed off from that. So we matched them well enough to work, but not
necessarily so well that it creates difficulty for some candidates to get a transplant. If the system itself was able to shrink wait
times, expand donation, expand the availability, I think it's reasonable to say that
we would expect some of those disparities to disappear. The biggest thing that could drive a difference in
your likelihood of getting a transplant once you're on the waiting list, it's geography. The U.S. was divided into 11 different regions in
1986 to help manage the national network, but geographical disparities developed around the
country, according to the Organ Donation and Transportation Alliance. Public health problems, sadly, do drive the rates
at which people die and can then be asked about organ donation. The states where the transplant programs have the
highest rates of death of people who can be organ donors want to keep them there. Other states say, Look, you shouldn't penalize us
because we are healthier. There are more people waiting in New York than
there are in Arkansas. So it's a national system we should share. And as morbid as it sounds, they told me to, if I
wanted to, list in a region where there were open carry allotments, because that means there's more
of an influx of donated organs. And I remember them telling me, this is going to
be very dark. It was a transplant coordinator who told me that,
someone whose job it is to get you listed. And they said, some people do it. And if you want to increase your chances, you
list in multiple regions. We've made changes in the last few years that make
it more likely that geography plays a smaller role in your likelihood of getting a transplant. One proposal is a framework known as continuous
distribution, which would eliminate hard geographic boundaries and prioritize the sickest
candidates and those with the best presumed outcomes. The goal is to create a more equitable
system for patients. There are physical limitations on being able to
transport an organ just anywhere for any amount of time, and that's important. We don't want a system that's theoretically fair
but wastes organs. So there is still some geographic decision making
in our process. One of the most in-demand organs is the kidney,
which can be donated by a living donor, like what Katharine did. I donated to someone in Wisconsin. It was just really easy for me. And I'm sure there are people out there who had a
terrible experience with it, but it was honestly the easiest process for me. You might think we could have a campaign and
encourage more people to do this. And you can. But in reality, most of us sitting
around are not going to give up a kidney to somebody we don't know. And there are two kinds of people who donate
kidneys, as I've studied it over the years. One is relatives. Your sister needs a kidney, you get biologically
tested, you're compatible, and you say, okay, you know, it's my sister, I'll do it. And then there are strangers. They see that somebody needs a kidney, maybe at
their mosque, and they do a speech and say, you know, I need a kidney. Please help me. And maybe someone from their
community steps forward and says, I'll do it. You're also asking that individual to take time
off from work, you know, perhaps be debilitated or at least reduced in how effectively they're
able to live their lives for some period of time and acknowledging that there are certain expenses
and certain needs that those individuals have. There have been a variety of proposals to address
the organ supply issue. One is a paid market to encourage living
donations. UNOS's position has always been that the ethical
challenges of creating a payment system are just too great. Even in a regulated market where there
was a fixed fee and the government made the arrangement and said, This is how much we can pay
for that, it certainly puts some people at greater risk because of their financial need. If you are to offer someone $5,000 for a kidney,
that number has a very different meaning for different people. Another suggestion is moving to a policy of
presumed consent for deceased donors. You know, we've seen states, the opt in versus opt
out from an organ donation perspective. And oftentimes people may not consider opting in
if they're given that choice. But the flip side is, is if they're told, you may
opt out of this, but otherwise we're going to proceed in this manner. I think people should do it because why not? You don't need two kidneys. There may even be a shift away from human
donations altogether. Back 20 years ago, we were talking about using
more living donors of kidneys. Now we're trying to wrestle with questions about
the use of animals, pig hearts, pig organs. And mechanical organs to try and substitute for
the scarcity that we still face. To be honest, that's a stopgap. The real answer is to do two other things: learn
how to grow organs artificially, maybe with bio printers, maybe with stem cells. What you want to do is either repair using cell
engineering or artificial organs that can just simply substitute for the natural organs that's
failed. It would change the world. Look at all the people who it could help. There's a lot of people on that list.
