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Organ Donation System Set For Changes


If you need an organ transplant, your chances depend on where you live. And many patients die waiting. The national registry has been based on geography since 1984 when the United Network for Organ Sharing, or UNOS, won a federal contract to oversee the distribution of donor organs. For the first time since 2005, UNOS will have to compete for that federal contract. Many hope this might help bring about change to a system where 20 patients a day can die while waiting for an organ. Dr. Dorry Segev is an abdominal transplant surgeon at the Johns Hopkins Medical Institute in Baltimore. He joins us on the line. Thanks so much for being with us.

DORRY SEGEV: Thanks for having me.

SIMON: And help us understand how this system works. You stand a better chance of getting a transplant in some places and not so good a chance in others.

SEGEV: There are places in this country where if you have a certain severity of liver disease, let's say, you have a 15 percent chance of getting transplanted in the next month. And there are other places where the same person would have an 85 percent chance of getting transplanted in the next month. And with liver, that translates directly to life or death, which means if you live in one place, you would have an 85 percent chance of dying in the next month. And if you move to a different place, you would have a 15 percent chance of dying in the next month.

SIMON: And there are people who move, aren't there?

SEGEV: There are definitely people who move. People who have the awareness that you can move and the education that you can move and the financial resources to move will move so that they can reduce their waiting time and increase their chances of surviving.

SIMON: And at the same time, people that can't afford that increase their chances of dying.

SEGEV: Yeah, if you can't afford to move, then unfortunately you are stuck in your local area. And you - if you live in certain places in this country, that means your chances of death are very high.

SIMON: What about people on fixed incomes who rely on - exclusively on Medicaid? Where are they left in this donor registry?

SEGEV: Yeah, so if you're on Medicaid and you don't have the finances to travel, then you are where you are. And if you happen to be in a place like New York or California, you're waiting times are going to be longer. And so what happens is these geographic disparities become socioeconomic disparities, racial disparities, et cetera.

SIMON: This might be an ugly question, but are all donated organs the same?

SEGEV: All donated organs are definitely not the same. Again, if you're in an area where you don't have much access to donors like in New York, most of your transplants will involve organs that came from outside of your area, which means organs that were turned down by other places, which means organs that aren't going to last as long.

SIMON: Dr. Segev, how would you like to see the system change?

SEGEV: I and many other people in transplantation would like to see the current lines of distribution redrawn, reconsidered, so that everybody in the country has more equitable access to transplants. The problem is that the current map, the current lines of distribution, were not drawn to be equitable. They were drawn based on decades-old historical relationships between hospitals way before we had a sense of supply and demand. So it was never meant to work toward the goal of equity, but there is a stated goal of equity in our system.

SIMON: And is it your impression that the United Network for Organ Sharing is tied to these maps?

SEGEV: Well, UNOS has been working on improving, reducing geographic disparities for decades. The challenge is that the policies made in transplantation are meant to maximize consensus. And when you talk about something like taking organs from one area and moving them to another area, half the transplant community supports it and the other half of the transplant community is less likely to support it because you are taking organs away from them and from their patients.

SIMON: Has the situation gotten worse?

SEGEV: Our waiting list is getting longer. The demand for organs is getting higher. The organ supply is not meeting that demand. And in addition to that, the range of disparities is getting worse as well, meaning that not only is the list longer but the differences between the shortest waiting times and the longest waiting times are getting longer.

SIMON: Which means inequity is growing greater; potentially more people die waiting.

SEGEV: Right, which means more people are dying waiting in general, and there is greater geographic disparity in where people are dying.

SIMON: Dorry Segev is a transplant surgeon at the Johns Hopkins Medical Institute in Baltimore. Doctor, thanks so much for being with us.

SEGEV: Thank you.

SIMON: And tomorrow on Weekend Edition Sunday, The Call-In returns. We’ll hear from a mother and father - they are both former teachers - who have this career advice for their son - don’t teach. They worry that teaching no longer gets the respect and money that it once did. That story tomorrow morning on Weekend Edition Sunday with Lulu. You can listen by asking your smart speaker to play NPR or your station by name - KCUR, KBIA, whatever. Transcript provided by NPR, Copyright NPR.