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Feb 8, 2020

Lost in Transplantation

Co-produced with PRX Logo

Delivering donated organs quickly to patients waiting for a transplant is a matter of life and death. Yet transportation errors are leading to delays in surgeries that put patients in danger and make some organs unusable. This week, we look at weaknesses in the nation’s system for transporting organs and solutions for making it work better. 

More than any other organ, donated kidneys are put on commercial flights so they can get to waiting patients. In collaboration with Kaiser Health News, we look at the system for transporting kidneys and how a lack of tracking and accountability can result in waylaid or misplaced kidneys.

We then look at the broader issues affecting organ procurement in the U.S. with Jennifer Erickson, who worked at the White House Office of Science and Technology Policy under the Obama administration. She says one of the system’s weaknesses is that not enough organs are recovered from deceased people – not nearly as many as there could be.

We end with an audio postcard about honor walks, a new ritual that hospitals are adopting to honor the gift of life that dying people are giving to patients who will receive their organs. We follow the story of one young man who was killed in a car accident over the summer.

Dig Deeper

Credits

This week’s show was reported and produced by Emily Harris and edited by Taki Telonidis.

Partners included JoNel Aleccia, Taunya English, Diane Weber, Elizabeth Lucas and Kelly Johnson from Kaiser Health News and independent producer Tina Antolini. 

Special thanks to Dexter Criss and Taunya English. 

Our production manager is Najib Aminy. Original score and sound design by Jim Briggs and Fernando Arruda, who had help from Kaitlin Benz and Katherine Rae Mondo. 

Support for Reveal is provided by the Reva and David Logan Foundation, the Ford Foundation, the John D. and Catherine T. MacArthur Foundation, the John S. And James L. Knight Foundation, the Heising-Simons Foundation and the Ethics and Excellence in Journalism Foundation.

Transcript

Reveal transcripts are produced by a third-party transcription service and may contain errors. Please be aware that the official record for Reveal's radio stories is the audio.
Al Letson: Before we get started with today's show, we wanted to let you know that a story that started right here on Reveal is now heading over to TV. Reveal reporter Trey Bundy has been exposing a child abuse cover up inside the Jehovah's Witnesses religion since 2015. The result is The Witnesses, a two night television event that shows what happens when a powerful institution protects its reputation instead of protecting kids.

 

Al Letson: You can see it on the Oxygen Network. The Witnesses premieres Saturday and Sunday, February 8th and 9th at 7:00 and 6:00, Central. For more information about how to watch, go to revealnews.org/witnesses.

 

Al Letson: For the Center for Investigative Reporting and PRX, this is Reveal. I'm AL Letson. I want to start the show today by telling you about a friend of mine, an engineer and a music producer, Maurice Ricks, but everybody calls him Mo.

 

Al Letson: I think we met ... I know it was over 20 years ago.

 

Maurice Ricks: Big Band Theory.

 

Al Letson: Yeah, Big Band Theory. The Big Band Theory was a 15 piece hip hop band with this conscious vibe. In the 90s, they were huge in my hometown of Jacksonville, Florida. They would pack out every club that they played.

 

Al Letson: Please correct me if I'm wrong, but back in the time of Big Band Theory I remember that you had gotten sick because I remember being worried about you. Everybody was like, Mo is in the hospital, and I knew that it had something to do with your heart and that you had some heart problems.

 

Al Letson: That was, like, 20 years ago. Can you take us back to the beginning?

 

Maurice Ricks: Yeah. I was born with kidney problems, so I've been dealing with that my whole life, and as the kidney problems progressed the heart stuff progressed, as well. I finally ended up in congestive heart failure.

 

Al Letson: Congestive heart failure, then, is different than, say, a heart attack, right?

 

Maurice Ricks: Right. It's the weakening of your heart, basically, and from there it progressed to the heart failure and then to the point we're at now, needing a transplant, a kidney transplant and a heart transplant.

 

Al Letson: There are at least half a million people like Mo in the US who need new organs, but fewer than 25% of them meet the criteria to get on the waiting list. Mo remembers the mixed emotions he felt when he learned he made it.

 

Maurice Ricks: I want to hurry up. I want to get this heart and kidney and blah, blah, blah, but then you sit there and think about it. Somebody has to pass away for you to get what you need.

 

Al Letson: Mo needed someone whose heart and kidney would make a good match. Last July, he was in the hospital in Gainesville, he'd been there for months, when his doctor walked in and told him a heart and kidney were available, a match for Mo.

 

Maurice Ricks: Wow. I guess, I can't even describe that feeling, man. It's like lightning strike, because I just wasn't expecting it.

 

Al Letson: But there's no time to reflect. Surgery prep starts immediately, and as the nurses are cleaning Mo's body and sterilizing instruments, a small medical team jumps on a private plane to retrieve the heart and bring it back. The team is led by Dr. Mark Staples.

 

Dr. Mark Staple...: This was a beautiful heart. It was strong and it squeezed very vigorously and it was just the right size. It stopped when we put the preservative solution in it, exactly like it was supposed to.

 

Al Letson: Time is critical. As soon as the heart was out, the team races back to the airport. They have just four hours or it'll be too old to transplant. Mo's new kidney will come later. Kidneys last a lot longer on ice.

 

Dr. Mark Staple...: We left the kidneys behind when we left the operating room and those were going to be transported potentially even with a commercial jet.

 

Al Letson: Mo has to be ready when his new heart arrives, so as Dr. Staples starts the return trip with Mo's new heart in a cooler, Surgeons are opening him up on the operating room back in Gainesville.

 

Dr. Mark Staple...: When we got to the airport, they were probably just cutting through his sternum.

 

Al Letson: The small plane takes off, and almost instantly it hits a flock of birds.

 

Dr. Mark Staple...: The plane really shook.

 

Al Letson: At first, the pilot keeps on climbing.

 

Dr. Mark Staple...: We got above the cloud layer at above 8,000 feet and smoke came into the cabin.

 

Al Letson: The plane makes an emergency landing at a small airfield near Atlanta. Dr. Staples jumps out. Pilots and Other private planes are sitting around on the tarmac. The clock is ticking.

 

Dr. Mark Staple...: I had a white coat and scrubs on, literally running from plane to plane with a cooler saying, "Can you take this? Please." Then it was a little more anger. "Why can't you take this heart?"

 

Al Letson: Nobody will take it, and pretty soon, in Gainesville, Mo starts to wake up.

 

Maurice Ricks: Thinks are clinking and clanking around in the operating room. I opened my eyes and I just kind of laid there, but I could tell something was off.

 

Al Letson: He doesn't recognize any of the hospital staff around him and they won't tell him anything.

 

Maurice Ricks: I was like, maybe I died and you're transitioning me to go to heaven or hell and they don't just tell you right away that you're dead. They kind of ease you into it.

 

Al Letson: He's obviously not dead, but he's shocked when he hears what happened. He gets through it, just like he's overcome a lot of challenges in his life, with a great sense of humor.

 

Maurice Ricks: Well, then they told me what happened, and conspiracy theories went, and I'm like, no, there's no way.

 

Al Letson: I should also tell you, if nobody else has told you, that everybody in Jacksonville had conspiracy theories, as well. Everybody was like, man.

 

Maurice Ricks: Like, no way.

 

Al Letson: Man, really?

 

Maurice Ricks: Yeah, me too. Me too.

 

Al Letson: Really?

 

Maurice Ricks: As the patient, I was doing the same thing.

 

Al Letson: But underneath the laughter, I think there's got to be a lot of fear, because Mo is still waiting for a new heart and kidney.

 

Maurice Ricks: It's a huge deal, man. It's organs. You're taking a piece of one person and putting it into another person. You don't want to waste that because there's so many people out there waiting.

 

Al Letson: Dr. Staples says the heart he was trying to get to Mo was eventually used for research purposes. A flock of birds taking down a small plane carrying a human heart has got to be super rare. We couldn't find another case like this, but sometimes organs fly on commercial flights which made us curious to know how often they have problems. It's a question reporter JoNel Aleccia of Kaiser Health News has been asking ever since December, 2018, when a human heart was accidentally left on a commercial flight.

 

JoNel Aleccia: A Southwest Airlines flight had to turn around because someone left a human heart onboard.

 

Al Letson: When JoNel heard this, she started wondering, which organs fly commercial and how often do they get lost, just like your luggage might? We teamed up with JoNel and Kaiser Health News to find out, and along the way we stumble onto an open secret in organ donation. Here's JoNel.

 

JoNel Aleccia: That heart left on a Southwest flight made me curious, because in more than a decade of reporting on organ transplants, it was the first time I'd heard such a story. It was all over the news.

 

Speaker 6: The issue was left behind, just like a suitcase.

 

JoNel Aleccia: It seemed like even the experts were surprised.

 

Speaker 6: In 30 years in the field, the director of Sierra Donor Services says she's never seen anything like this happen.

 

JoNel Aleccia: Hearts going to patients for transplant never fly commercial. This heart was headed to a processing center where its valves and tissues would be kept for later use. Still, I wondered if losing organs when they fly commercial really is rare, and my curiosity eventually took me to Orlando, Florida, and the offices of Our Legacy, a nonprofit organization that manages organ donations in this region.

 

Jenny McBride: Hi.

 

JoNel Aleccia: Hi.

 

Jenny McBride: Great to meet you.

 

JoNel Aleccia: Nice to meet you in person.

 

Jenny McBride: Come on in, sorry.

 

JoNel Aleccia: Jenny McBride is the executive director. Her organization mostly works with kidneys and keeps them behind this locked door along with the supplies preserve them.

 

Jenny McBride: I forgot the stupid number. 8-4-7 ...

 

Speaker 7: 8-4-7-2.

 

Jenny McBride: Thank you. This is where the guys keep all the supplies for organ recovery. There's preservation solutions in there, some blood from previous cases.

 

JoNel Aleccia: Oh, okay, so we have a freezer full of ...

 

Jenny McBride: Ice. It's just sterile ice.

 

JoNel Aleccia: Sterile ice, wow.

 

Jenny McBride: Sterile saline ice.

 

JoNel Aleccia: Sterile saline ice. Jenny Starts her career as an intensive care nurse working with families whose loved ones were dying. That's where she first learned about organ donation.

 

Jenny McBride: It just resonated, the fact that you could do something good out of such a bad situation and help a family and help someone else at the same time. It was just a natural connection.

 

JoNel Aleccia: Such a connection, she left nursing for this. Our Legacy is one of 58 groups in the US called organ procurement organizations. Each covers a different geographic area. People here talk to families whose loved ones are dying about organ donation and then make sure that if their hearts, lungs, livers and kidneys can be transplanted, they get to the patients who need them.

 

Jenny McBride: Where's the light? There it is.

 

JoNel Aleccia: Jenny leads me to a back room with machines about the size of a home office printer. They've got lots of tubes and buttons.

 

Jenny McBride: Those are pumps that the kidneys are put on. We assess them.

 

JoNel Aleccia: They profuse the kidneys with ...

 

Jenny McBride: It's just a normal preservation solution.

 

JoNel Aleccia: That would extend a kidney's ...

 

Jenny McBride: It makes them transplantable for about 30 hours.

 

JoNel Aleccia: This is why kidneys can fly commercial. They can last a pretty long time outside a human body. Last year, Jenny's organization shipped out 173 kidneys.

 

Jenny McBride: You also hold your breath and kind of say a little prayer that everybody does what they're supposed to do along the way.

 

JoNel Aleccia: I asked Jenny, "How often are kidneys affected by commercial flight problems?"

 

Jenny McBride: We've been unaware of how many kids have gotten waylaid over the years. That's not a number that's transparent to us.

 

JoNel Aleccia: Jenny's not the only one who doesn't know. The industry doesn't keep track, nor does any government agency responsible for either health or transportation. Kim Young works with Jenny and oversees a lot of the organ shipments.

 

Kim Young: I'm a registered nurse and I am the organ recovery coordinator at Our Legacy and I have been here almost 10 years total.

 

JoNel Aleccia: One Saturday last October, Kim was in charge of a kidney that had been donated.

 

Kim Young: As the team lead, I took over the kidney allocation. The surgery was over.

 

JoNel Aleccia: Now, the clock is ticking. They have about 30 hours to find a recipient, transport the kidney to the hospital, and transplant it. First, her team tries to find someone nearby.

 

Kim Young: We went through our local centers and they did not accept the kidney.

 

JoNel Aleccia: When Kim can't find a recipient in the same region as the donor, she follows protocol and calls a national coordination center called UNOS, the United Network for Organ Sharing. It's the federal contractor that oversees organizations like Jenny's. A few hours later, a UNOS coordinator calls her back.

 

Kim Young: I remember getting the call. She told me that she had placed the kidney, and I said, "Okay," and I went back to sleep.

 

JoNel Aleccia: Kim has worked three 24 hour shifts this week. She's catching any rest she can. UNOS takes over managing the transportation and the kidney gets on the first leg of its journey, leaving Orlando at 7:00 PM.

 

Speaker 9: Ladies and gentleman, [inaudible 00:12:16], we're number two for departure.

 

JoNel Aleccia: It has 12 hours to get to its final destination, North Carolina.

 

Speaker 9: ... Orlando. Flight attendants, please secure the cabin [inaudible 00:12:23].

 

JoNel Aleccia: The kidney is supposed to make a connecting flight in Atlanta.

 

Kim Young: I just remember the phone ringing and I answered it and she said, "The kidney did not get on the flight."

 

JoNel Aleccia: Instead of being put on the next flight to Greensboro, the kidney is still sitting in Atlanta.

 

Kim Young: She said, "The surgeon in North Carolina is having a fit," and then I called Jenny.

 

Jenny McBride: Kim's words were, "We have a problem."

 

JoNel Aleccia: Jenny's out of town on a camping trip and she knows there isn't a lot she can do from there.

 

Jenny McBride: Well, your heart sinks, because you know it's 11:00 at night. You know it's Atlanta. You know there aren't any other commercial flight options, and so Kim's words were, "What do we do now?" I said, "We're going to have to figure out how to get it out of there."

 

JoNel Aleccia: The organ is flying on delta which is based in Atlanta. Delta advertises a special service for organ transportation.

 

Speaker 10: Delta Cargo is the trusted carrier for many critical and time-sensitive shipments. When human transplant organs need to get somewhere in a hurry, Dash Critical makes it happen on the very next Delta nonstop flight.

 

JoNel Aleccia: But just from talking to surgeons, I learn about another kidney that had a problem flying Delta just two weeks earlier. That time, the surgeon says he was told at first that the kidney had missed its connection in Atlanta. As it turns out, it had actually gotten to its final destination. How exactly that happened is not clear, but the kidney sat in the airport for three hours.

 

Speaker 10: It's another way Delta Cargo delivers every day for our customers.

 

JoNel Aleccia: I talked to nearly a dozen transplant surgeons around the country. They all knew about transportation troubles. Here's Dr. David Axelrod who does transplants at the University of Iowa.

 

Dr. David Axelr...: Last week, I turned down a kidney that I would have taken because it missed the last flight out that night and it was going to go from having 12 hours of cold time to having 28 hours of cold time.

 

Dr. Christie Go...: Some of these organs end up getting trashed.

 

JoNel Aleccia: Dr. Christie Gooden is a transplant surgeon in Dallas.

 

Dr. Christie Go...: That's just ridiculously frustrating. We have way too many people on the list, way too many people waiting, to lose an organ just because of logistics.

 

JoNel Aleccia: Some delayed organs can be rerouted for research, but David Axelrod says kidneys shouldn't be missing those flights in the first place.

 

Dr. David Axelr...: If Amazon can figure out when your paper towels and your dog food is going to arrive, it certainly should be reasonable that we ought to track life saving organs which are in chronic shortages.

 

JoNel Aleccia: Here is one big difference. Amazon controls every aspect of its system. Organ distribution relies on multiple partners, nonprofits like Jenny's that recover the organs, doctors, career services, and, of course, the airlines. It's not just Delta. Southwest, American, United, and Alaska, all fly human organs and tissue. Because it's not a centralized system, nobody keeps comprehensive records, but as I'm researching, I discover that UNOS has been quietly collecting numbers on transportation problems. I head to their headquarters in Richmond, Virginia.

 

Lauren: Organ center, this is Lauren.

 

JoNel Aleccia: On the outside, it's a sleek concrete and glass building. Inside, the offices and hallways look down into the call center. It's like a fish bowl.

 

Lauren: Is this liver primary or backup?

 

JoNel Aleccia: This is where Kim Young called when she needed help finding someone to take that kidney, and where the organ coordinator told her it had missed the flight. UNOS coordinates some 1800 organ and tissue transplants every year. Of those, more than 1400 are kidneys. Roger Brown runs the place.

 

Roger Brown: We are placing up to 24 to 30 plus organs in a 24 hour period, so we're quite busy.

 

JoNel Aleccia: Roger is 48 and has worked here since college, after his father got a heart transplant.

 

Roger Brown: It kind of me motivated me a little more to look into this field, so I found this job in the classifieds section. Right after church organist was organ placement specialist, and I'm like, this is a job I have to have.

 

JoNel Aleccia: UNOS is all about logistics but it only switched from using clipboards and paper trails to a computer system in 2016. With that switch, Roger unintentionally created a system that can count how often transportation problems crop up each year. More than half the time, it's the airline or airport. It could also be problems with couriers or with the OPOs or hospitals on either end.

 

JoNel Aleccia: I think your data shows, like, 6.5% of the shipments had a transportation problem.

 

Roger Brown: Yes. That data's correct. The majority of those problem areas are delays.

 

JoNel Aleccia: That, in the data, is called a near miss.

 

Roger Brown: Yeah, and it's just a label, but yeah, we chose to use near miss as a label for a delay of two or more hours where the organ ended up still being transplanted at the original intended destination.

 

JoNel Aleccia: UNOS also tracks what it calls failures. This means that the person waiting for that organ didn't get it. Someone else might have, or it might not have been transplanted at all. Roger says his data doesn't show whether transportation problems are the only reason.

 

Roger Brown: It's important to know that a delay could be a primary reason that an organ was not transplanted. It could be a contributing factor or it could have nothing to do with the reason that the organ is transplanted.

 

JoNel Aleccia: UNOS handles only a portion of all the organs transported nationally, usually ones that are hard to place. Out of just over 8800 UNOS shipments of organs and tissue over roughly four years, more than 7% had transportation problems. Roger's numbers also show nearly 170 organs never got transplanted and almost 370 were delayed between 2 and 12 hours.

 

JoNel Aleccia: One of those near misses is the kidney Jenny and Kim were tracking late that Saturday night, last October. It missed its connecting flight in Atlanta and they've got to figure out how to get it to North Carolina. They now have nine more hours until the transplant surgeon says he won't use it.

 

JoNel Aleccia: Jenny's at a campground. Kim is in her spare bedroom at home waiting for UNOS to tell her how much a charter flight will cost.

 

Kim Young: She called me back and said, "It's going to be $15,000 and it will only get there an hour before if we drive it."

 

Jenny McBride: I said, "Okay, then send it on the ground."

 

Kim Young: That's what we did.

 

Jenny McBride: Then you just worry, was that the right thing? I didn't sleep the rest of the night.

 

JoNel Aleccia: Jenny and Kim worry about every organ they send off, but talking about transportation problems like missed flights is a sensitive topic in the transplant community. In one of my earliest conversations with Jenny, on the phone she admitted it's hard to talk about.

 

Jenny McBride: I, myself, feel reluctant, but I'm going to try and push through. Any time that you cast any doubt that this system isn't working perfectly, you feel like you risk having people take themselves off the donor registry.

 

JoNel Aleccia: Many leaders in the organ procurement organizations downplay the losses of kidneys on commercial flights.

 

Kevin O'Connor: My name is Kevin O'Connor. I am the president and CEO of Life Center Northwest.

 

JoNel Aleccia: Life Center Northwest recovers organs from Washington, Montana, parts of Idaho, sometimes even remote areas of Alaska, and ships them for transplant. Kevin says he doesn't think transportation problems are a big issue.

 

Kevin O'Connor: For over 30 years, and literally tens of thousands of organs being transported, I can count on the fingers of one hand the number of times that, because of a transportation glitch, that an organ was ultimately not transplanted.

 

JoNel Aleccia: I tell Kevin what the UNOS data shows. Dozens of kidneys discarded and hundreds of near misses. What do you make of that? Is that acceptable?

 

Kevin O'Connor: No. In fact, I think even one kidney being thrown away because of transportation errors is not acceptable.

 

JoNel Aleccia: Kevin points out that organs don't get transplanted for a lot of reasons. For example, a surgeon might discover an organ is lower quality than expected or it just might not fit the patient physically.

 

Kevin O'Connor: In spite of our best efforts, there will always be occasions where an opportunity for a transplant will be missed.

 

JoNel Aleccia: Without more complete numbers, it's impossible to know how transportation problems compare to the other reasons, but when Kim Young, Jenny's organ coordinator, learns that more than 7% of shipments handled by UNOS have some kind of transportation problem, she gets mad.

 

Jenny McBride: Well, we work so hard. Our motto here at Our Legacy is, "Every organ, every time." It sickens me to think that organs are being lost and recipients aren't getting them and they're going to have to go on dialysis. It just sickens me.

 

JoNel Aleccia: That kidney Kim was tracking to North Carolina, a courier picked it up at Delta Cargo in Atlanta, drove it through the night, and got it to the transplant center at 6:14 AM. It's one of the near misses in the data. It arrived with just 46 minutes to spare.

 

Kim Young: It was 29 hours old when he transplanted it, and it should never have happened. The kidney should have been there by 2:00, yeah.

 

JoNel Aleccia: Kim and Jenny are relieved that the kidney got transplanted into the patient who was expecting it, but they still want to know why it missed its connection in the first place. A month later, all they've heard from Delta is that a cargo employee in Atlanta set the box aside.

 

Jenny McBride: Somebody made an independent decision to not put the kidney on the plane.

 

JoNel Aleccia: The boxes say, really clearly, human organ.

 

Jenny McBride: Yeah. It's very clear, yeah.

 

JoNel Aleccia: I try asking Delta.

 

Speaker 16: You have reached the voicemail of Adrian Gee, corporate communications at Delta Airlines. Unfortunately, I was unable to take your call.

 

JoNel Aleccia: After multiple calls and emails, I never get a callback. I wrote a letter to Delta laying out the incident in full detail. No one replied. Jenny finally receives written internal reports about what went wrong, from Delta Cargo and from Sterling, the courier service that got the kidney on the first flight. She shows me copies. Delta advertises that it uses GPS trackers to ship human organs, but two problems cropped up in this instance.

 

JoNel Aleccia: First, the kidney was allowed to leave Orlando without a GPS. Then, Delta says the reason it was bumped from the connecting flight was there was no tracker available.

 

Jenny McBride: It was interesting to me that Delta seemed very focused on the GPS.

 

JoNel Aleccia: Delta concluded, and I'm reading from the report here, that they should assess the business justification to buy more GPS units and develop a more robust inventory management process. Jenny's not satisfied.

 

Jenny McBride: I'd like to know from Delta why they didn't call the number on the box. I would like to know from Delta why it was more important to have the GPS tracker in place than it was to keep the kidney on its route and get it there in the timeframe that it was expected. I just think there's a total absence of understanding what is in that box and why it needs to be treated so delicately.

 

JoNel Aleccia: But getting those answers about this one kidney isn't as important to her as fixing the system, making sure transportation problems don't get in the way of saving lives.

 

Jenny McBride: There's a framework for how patients are referred to us. There are laws and regulations to guide the allocation of organs, but it's becoming more apparent that we have to assure that when a kidney embarks on a journey, that it gets to its final destination the way that destination is intended.

 

JoNel Aleccia: Figuring out just how that should work, though, is still an open question, and this logistics problem is affecting other efforts to improve the system. For example, last year, the transplant community suggested regularly shipping kidneys farther to reach more people and make distribution more fair, but the suggested distance got cut in half because many people, including surgeons, some patients, and OPOs like Jenny's, were worried about transportation.

 

Al Letson: Many thanks to JoNel Aleccia of Kaiser Health News for bringing us that story. For policymakers who've looked at the big picture of organ donation, transportation is just one of the many things that aren't working as they should.

 

Jennifer Ericks...: For those organ procurement organizations that are doing a good job, they should keep doing it, and if they're not, they need to be held accountable immediately.

 

Al Letson: When we come back, how the system could work better. One last thing before we move on, my friend Mo, who didn't get a new heart transplanted because the plane carrying it hit a flock of birds, he got a temporary heart pump implanted. This means he has to haul a big battery pack around and take care of an open wound where the wires run inside, but he's fairly stable and he's still hoping for a new heart. You're listening to Reveal.

 

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Al Letson: For the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson. Today, we're looking at organ donation and the ways the system could be working better. On any given day, there are about 113,000 people in the US who need a replacement for a kidney, a heart, liver or lungs.

 

Al Letson: Each day, almost 20 of them die waiting because an organ isn't found in time. Shortening that waiting list is a problem Jennifer Erickson has been trying to solve for years. Under President Obama, she worked on organ donation at the White House Office of Science and Technology Policy.

 

Jennifer Ericks...: We started from science and technology and thinking about how we could bioengineer our way out of this in the future, but what was really revelatory to us was realizing how many things could be done to help patients now.

 

Al Letson: In looking at the system up close, Jennifer saw a lot of things that alarmed her. So much so, that she changed her will, and a couple months ago, decided to write about it. I read your op-ed in the Washington Post saying that you put a clause in your will that when you die, a colleague has to track down what happened to your organs to make sure they got put to good use. Why do you doubt that they would?

 

Jennifer Ericks...: It's interesting. I knew when I was in the White House that there was inefficiency, that we weren't doing everything we could, but then after I left I saw data that came out from groundbreaking research at the University of Pennsylvania that showed that up to 28,000 organs go unrecovered every year. That's 17,000 kidneys, almost 8,000 livers, 1500 lungs, 1500 hearts, and you think about what that means for patients and for people who love them.

 

Jennifer Ericks...: You think about what that means for the tax payers who are paying billions of dollars in Medicare to keep patients alive on dialysis when a much better treatment for most of them would be a transplant. You're right. I did update my will. I am still an organ donor and it's so important to me, I just want to make sure that if I die in an organ donation eligible way, that we know whether or not that happened.

 

Al Letson: The story we heard at the beginning of the show is about how organs are lost or delayed when they're being transported and here's what we found. Over roughly four years, more than 7% of shipments have a transportation problem, and when we counted that up, that included nearly 170 organs that never got transplanted and almost 370 that were delayed between 2 to 12 hours.

 

Al Letson: This isn't a full picture. The data is from just one government contractor that moves human organs around, but what do you think? Do those numbers surprise you?

 

Jennifer Ericks...: They horrify me. You're talking about hundreds of organs that have been recovered, donors and their families that have made this amazing gift, and then they either don't make it in time and quite literally are thrown away, or even the numbers you mentioned, Al, about getting there late, if an organ comes hours later, let's be clear. That has an implication for that patient. They could die years sooner because that organ was stuck on a plane or in transit, and they'll never know.

 

Al Letson: No one currently tracks organs. Should there be someone doing that? Should there be a government agency that looks into that?

 

Jennifer Ericks...: There's a web of organ procurement organizations or OPOs that are around the country. They're responsible for a lot of the tracking, and then there's a government contractor that's supposed to oversee all those 58 other government contractors that's called UNOS. Clearly, something is going wrong if we're losing hundreds of organs a year, either because they've been thrown away or because they've gotten there so late that it's also going to affect patient outcomes.

 

Jennifer Ericks...: You can talk to surgeons. I talked to a surgeon recently who got a kidney not long ago and it arrived to her in a box with tire marks on it. When she opened it up it was the consistency of ground meat. She couldn't use that. She had a patient on the table waiting for it. I talked to another surgeon recently who was waiting for an organ and it went to a completely different airport in a completely different state. In the past, to be honest, I thought those were edge cases.

 

Jennifer Ericks...: I was more concerned about the organs not being recovered at all. On the back of your reporting, I have two concerns. One, them being recovered, and then two, them getting to patients in an way that can save their life and maximize their life by getting there as quickly as possible.

 

Al Letson: I think what people who work for OPOs would say is that those numbers are relatively low, that there are about 23,000 kidneys transplanted every year overall, and they're not saying it's not a problem but it's not a priority problem. What do you think?

 

Jennifer Ericks...: Tell that to the 113,000 American families that are waiting to get a phone call about an organ transplant.

 

Al Letson: Yeah. Bigger picture, what do you want to change about the system?

 

Jennifer Ericks...: Accountability. I mentioned there's this network of 58 government contractors, and none of them, not one, has lost a contract in decades. This is a life and death issue. For those organ procurement organizations that are doing a good job, they should keep doing it. If they're not, they need to be held accountable immediately. The government needs to pull those contracts, needs to demand changes.

 

Jennifer Ericks...: I'll give credit to the current administration. They have acknowledged that there's a big problem. Right before the holidays, they published proposed changes to accountability here that actually said the majority of the country is currently served by contractors that are failing in organ donation.

 

Al Letson: Do you have a sense of which OPOs do a good job and which don't?

 

Jennifer Ericks...: Yeah, the government told us, and when they actually moved to objective data, what they showed in the proposed rule is that the majority are failing. Those who are failing include, like I said, my home state of Virginia, New York City, Los Angeles, Kentucky, South Carolina, Oregon, Iowa. The list is out there for the public to see and the secretary of health and human services, Alex Azar, actually said that the government is not going to stand aside any longer while patients die and government contractors don't do their job.

 

Al Letson: When you say objective data, as I understand it, you're talking about how many people should count as eligible to donate organs once they've passed away, because the success of OPOs is measured by how many organs they recover from eligible donors, and as I understand it, right now OPOs decide what deaths are eligible, so they influence their own success rate. The administration has used a more objective number from the Centers for Disease Control to figure out who is failing, but not everyone who wants to donate can, right? What's an eligible death?

 

Jennifer Ericks...: You're right. You have to die in a way that your organs could still be used. There's a small set of ways that that could happen. You have to be otherwise, generally speaking, healthy, so for example, strokes, overdoses, car and motorcycle accidents. These are the kinds of things, ski accidents we see sometimes, that lead people to be able to be organ donors, but you raise a really good point because saying that only a small segment of Americans die in an organ donation eligible way means it's even more important that those wishes be honored.

 

Al Letson: What are the other ways that OPOs need to improve?

 

Jennifer Ericks...: Sometimes they just don't show up, and I mean that quite literally. It's a tough job. You are talking to people on what is often the worst day of their life, as they lose a loved one, often in tragic circumstances. I'm in no way minimizing the importance and the difficulties of that job. That makes it all the more important, and we know this from the research, that if the OPO personnel show up in a timely and compassionate way, then the vast majority of families will donate.

 

Jennifer Ericks...: If they don't show up at all, they can't donate. If they show up late, if they show up and their tone isn't so compassionate ... Again, it sounds so obvious, but it's so important what they do, and far too often it's failing.

 

Al Letson: How often do they really not show up? Do you have any idea?

 

Jennifer Ericks...: I don't know from the data to be able to tell you when they never showed up, when they showed up late, when they showed up in a way that the family found un-compassionate. I don't know the breakdowns of those things. What we know is that the performance around the country is wildly variable. I'll give you an example. In Nevada, the OPO used to be one of the worst performing OPOs in the country.

 

Jennifer Ericks...: The board finally woke up, fired the leadership, hired new leadership, and by the way, fired them for financial improprieties, not just for not recovering organs, although they were doing a bad job of that, too, and within three years the new leadership team turned it around and they were recovering 67% more organs.

 

Jennifer Ericks...: What's really alarming to me about that example is, think about this, you could have a 67% difference in a life and death issue, and the government still didn't pull the contract.

 

Al Letson: Your dad, I understand, needs a kidney transplant, so this isn't just policy for you. This is personal.

 

Jennifer Ericks...: My father, he lost his kidneys due to high grade cancer. He was a helicopter pilot in Vietnam, and so this is personal for me. I've seen what it's like to have someone with organ failure in the family and it's horrific. I'm sure many of your listeners can relate to that. Again, just knowing that thousand of Americans don't have to be in that situation, that's what's kept me involved.

 

Al Letson: Jennifer Erickson, thank you so much for joining me.

 

Jennifer Ericks...: Thank you.

 

Al Letson: Jennifer Erickson served in the White House Office of Science and Technology Policy under President Obama. She continues to work on organ donation policy. It's a matter of life and death. It's one of those expressions we throw around pretty loosely, but when it comes to organ donation, those are the stakes. The promise of life for patients who are waiting for organs means someone else has to die. Often, those deaths are unexpected and tragic and they devastate the families who are losing a loved on.

 

Al Letson: In an effort to honor the gift of life made by dying patients and to bring comfort to their families, hospitals that recover organs are adopting a new ritual. It's called an honor walk.

 

Speaker 20: You see uniforms from all across the hospital.

 

Speaker 21: From housekeeping, to folks who work in the cafeterias, to doctors, to nurses and residents from all over the hospital.

 

Speaker 22: To walk those steps behind your son, and you realize it's literally 2 or 300 people in those halls, now that was amazing.

 

Al Letson: We'll bring you this story in a special podcast coming Wednesday, February 12th. Don't miss it, and thanks for subscribing to Reveal. Our lead producer for this week's show is Emily Harris. It was edited by Taki Telonidis. Special thanks to our Kaiser Health News partners including JoNel Aleccia, Tanya English, Diane Weber, Elizabeth Lucas, Kelly Johnson, and a special shout out to Mac, also known as Mary Agnes Carey.

 

Al Letson: Kavya Sukumar of the Bad Idea Factory worked on our data analysis. Victoria Baranetsky is Reveal's General Counsel. Our production manager's Mwende Hinojosa. Original score and sound design by the Dynamic Duo, J. Breezy, Mr. Jim Briggs and Fernando my man yo, Arruda. They had help this week from Amy Mostafa and Najib Aminy. Our CEO is Christa Scharfenberg. Matt Thompson is our editor-in-chief, and our executive producer is Kevin Sullivan.

 

Al Letson: Our theme music is by Camerado, Lightning. Support for Reveal is provided by the Reva and David Logan Foundation, the John D. and Katherine T. McArthur Foundation, the Jonathan Logan Family Foundation, the Ford Foundation, the Heising-Simons Foundation, the Democracy Fund, and the Ethics and Excellence in Journalism Foundation.

 

Al Letson: Reveal is a co-production of the Center for Investigative Reporting and PRX. I'm Al Letson, and remember, there is always more to the story.

 

Speaker 23: From PRX.