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.