Welcome to the reboot of the Undark Podcast, which will deliver — once a month from September to May — a feature-length exploration of a single topic at the intersection of science and society. In this episode, join freelance audio producer Kaitlin Benz and podcast host Lydia Chain as they take a penetrating look at the uncertain and challenging paths of patients diagnosed with kidney failure, and chat with the doctors working to make more lifesaving transplants possible.
Kaitlin Benz: Three and a half years ago, Wilson Du got news that upended his whole life.
Wilson Du: Prior to June of 2016 I was a mortgage banker. My career was skyrocketing at the time, everything was going well on that front. And I was really heartbroken, I had to stop everything. I went from just flying high to everything turned upside down.
Kaitlin Benz: His disease had been progressing slowly and then, all at once, it came to a head.
Wilson Du: I was obese, over 300 pounds. I started getting some pains in my feet and then it went to my knees. Inflammation from head to toe: My neck, my back, my fingers, my elbows, my knees, everywhere. Long story short, went to the ER and thought that it was just gout, thought they were just going to give me some pain meds. Unfortunately, they said I had Stage 5 — end stage — renal disease, along with the gout, and so that I would have to start dialysis soon.
Kaitlin Benz: What he really needed was a kidney transplant, but he had no idea just how hard it would be to get one.
Lydia Chain: This is The Undark Podcast. I’m your host, Lydia Chain. Right now, Du joins around 100,000 other Americans waiting for their life-saving kidney transplant. And there’s no guarantee he will get one. Nearly 80 percent of the people that die waiting for an organ are kidney patients, and every year more people are added to the waitlist than receive their transplant — a crisis predicted to escalate as rates of diabetes, hypertension, and obesity increase. So how do we meet this growing need for kidneys? In this episode, reporter Kaitlin Benz talks with surgeons, researchers, and public health experts hustling to fill that gap, including those taking another look at donor kidneys that just last year would have been labeled as damaged and thrown away.
Wilson Du: When I was first diagnosed, I was in denial. It was, give me a pill, give me a surgery, whatever, fix whatever you’ve got to fix, I’ve gotta get back to my life. Doctor’s like, no it doesn’t work that way, you’re going to have to make arrangements. I still didn’t believe him. I don’t know what kidney failure is, I just know it’s bad. First glance at Google, what is the average lifespan of a person on dialysis? And here it goes, Google says five to seven years and I’m like, “Oh gosh.”
Kaitlin Benz: Du’s doctors told him that theoretically, there was another treatment — a kidney transplant. And so he asked to be put on the waitlist for a new kidney as soon as possible. But they said it wasn’t possible. At least not for him, at least not yet.
Wilson Du: Unfortunately because of your weight, you’re not going to be able to qualify for a transplant. You need to lose a hundred pounds. Granted, at that moment I couldn’t walk. I was in so much pain and you’re telling me to lose a hundred pounds, are you out of your mind? How the heck am I supposed to lose a hundred pounds? Transplant was so far-fetched for me. Losing a hundred pounds at that point was just, it was an impossible feat.
Kaitlin Benz: In general, doctors won’t add a kidney patient to their hospital’s waitlist if they’re so sick that they might not survive a transplant, or like Du, so heavy that the surgery would be too risky. Those patients are only offered dialysis — a time-consuming, physically difficult option.
Paul Brakeman: Every day in the United States, about a little more than 250,000 patients do hemodialysis.
Kaitlin Benz: That’s Paul Brakeman. He’s the medical director of the Pediatric Kidney Transplant Program at the University of California San Francisco’s Benioff Children’s Hospital.
Paul Brakeman: Hemodialysis consists of removing a small amount of blood from the body, flowing it through a machine that essentially cleans the blood, and then you return that small amount of blood to the body, and you do that continuously for three to four hours to have one treatment, and the treatments are done three times a week.
Kaitlin Benz: There is another way to do dialysis at home, but it could be even larger time commitment.
Paul Brakeman: If your kidneys have failed, you pretty much only have three options. You can do dialysis, you can do transplant, or you can do nothing and eventually you die of your kidney disease. And so, if you are unable to receive a kidney transplant, you have to do dialysis. However, dialysis is an imperfect treatment. If you look at the adult dialysis population, I believe about 70 percent of them are unemployed and there’s a very high rate of depression in the population, not surprisingly because patients who are chronically ill as well as unemployed often have higher stress or social burdens that is one of the drivers for depression.
Wilson Du: Here’s almost like a part-time job where you’re sitting in a clinic, you know… you’re in there for, you know, 20 hours a week or whatever it is. You’re so restricted on what you can do and you’re always tired and there’s so many things. I do see in a way my health deteriorating through the dialysis. I’m not as strong as I used to be. I’m not as fast as I used to be. I get a little bit more fatigued at times.
Kaitlin Benz: Once a patient starts dialysis, the time-commitment and physical stress of treatment can make it even more difficult for them to meet the health and weight criteria to be put on a transplant list. [pause] Du was determined to make it onto that list.
Wilson Du: I had two choices. Give up dialysis essentially, meaning that I would pass, or decide to fight. And I really asked myself the question of, “If I were to pass, would I have been happy with my life? Would I leave this earth a better place than I came in?” And the answer to that was no.
Kaitlin Benz: So he chose to fight. He started working out, first by taking a few steps to the end of the porch and back. He’s since picked up long distance cycling, weightlifting, and boxing. He’s lost more than 100 pounds and counting and was added to the waitlist last year, a year and a half after he got his diagnosis. The only thing still standing between him and a new kidney now are all of the other people waiting for the exact same thing. Once you make it onto the list, your wait is far from over. In fact, it’s likely it’s only just begun.
Ron Gill: At the end of the day, this is an area of medicine where there is a chronic shortage.
Kaitlin Benz: Ron Gill is the former president of the American Society of Transplantation, and director of a transplantation research group at the University of Colorado Anschutz Medical Campus, home to the largest transplant center in the Rocky Mountain region.
Ron Gill: When you’ve got somewhere in the neighborhood of 115,000 people on a waiting list, and I can’t remember the exact numbers but even during this conversation, one of them has probably passed away. The harsh reality is for every person who gets a transplant, there’s someone else on that list who’s not getting a transplant.
Kaitlin Benz: The waitlist is for organs recovered from deceased donors — people who have checked that little box on their driver’s license and agreed to donate their organs after they die. Living donation is through a different system and we’ll get into that a little later. About 54 percent of U.S. adults are organ donors — that’s around 145 million people. But that yields a much smaller supply of usable organs because checking that box doesn’t always mean the organs can be recovered after death. In fact, donors have to die in a very specific way for their organs to actually be viable.
Ron Gill: The problem is that there are very strict criteria that makes you a kidney donor as a deceased donor. Virtually all of the deceased donors who donate a kidney, have to have certain criteria. They’re brain dead donors. So it’s a narrow group of people that actually are biologically suited to be a donor.
Kaitlin Benz: Only around 2 percent of people die this way. So if someone dies at the scene of a car crash, takes a fall at home and hits their head, gets shot, or dies in any way that their heart stops before they are in a hospital on life-support, all their organs quickly become unusable due to the lack of blood flow. But even if a donor passes away in the most perfect of circumstances, brain dead, in a hospital, with their family consenting to withdraw care and recover organs, things can still go wrong.
In the U.S., there are 58 local organ procurement organizations, more commonly known as OPOs. When someone is dying in the hospital with no chance of recovery, doctors will call their local OPO and set the organ procurement process into motion. The donor will go into surgery, their organs will be collected and the OPO will work to distribute the organs to people on the local waitlist. But for years, journalists and independent researchers have said these OPOs are not getting as many organs as they should be. Numerous studies and investigations have claimed OPOS could be recovering more than twice as many organs as they do now, if they were to opt for organs that were less-than-perfect, but likely still good enough.
Just a few weeks ago, a study published in the journal JAMA Internal Medicine looked at discard rates in France and in the United States. It found that OPOS in the U.S. discard at least 3,500 kidneys a year, nearly 20 percent of all deceased donor kidneys, as compared to 9 percent in France. These discarded kidneys are often from donors over 50 years old, or with curable diseases. But it’s hard to tell just how many organs we are missing out on because OPOS self-report their own numbers. And, according to a 2017 study published by the American Society of Transplantation and the American Society of Transplant Surgeons, some OPOS have even manipulated their numbers to appear better than they are.
In July, President Trump signed an executive order to launch an initiative called “Advancing American Kidney Health.” One of the plans is to order Secretary of Health and Human Services Alex Azar to reform the organ procurement process to increase the supply of transplantable kidneys. I reached out to Azar’s office to hear more about this initiative, but they did not provide a comment.
So even when things went to plan and the OPO did recover an organ, sometimes the kidney doesn’t make it to the recipient. Here’s Joseph Scalea, a transplant surgeon at the University of Maryland’s School of Medicine.
Joseph Scalea: The reality is that there are lots and lots of organs at my center and at other centers around the country that never get used because we simply cannot get them there fast enough. We have self-driving cars and we’re talking about missions to Mars, it strikes me as just outlandish that we can’t get lifesaving organs from Point A to Point B.
Kaitlin Benz: Because organs are most commonly transported on commercial airplanes, which don’t set their schedules by when an organ becomes available. So, if you have a kidney ready to go at 2 a.m. and there’s not a flight out from the nearest airport for 10 hours, that kidney could be just sitting in a box that entire time. And when it finally arrives, it would be too late to do a safe transplant and a perfectly good kidney would have gone to waste.
And this is where the story gets more complicated. Because what counts as a ‘good’ kidney can sometimes be up for debate. When an OPO recovers an organ, they find an appropriate candidate on the waitlist and contact their doctor to discuss the potential transplant. Brakeman explains how this works.
Paul Brakeman: When a deceased donor kidney becomes available after, say an accident, it is evaluated for its likelihood of functioning, and it is given a rating and then that rating is used by the surgeons who do the kidney transplants to decide which type of patient could benefit from an organ. So an organ that is likely to have significant damage from the event that killed the person who could donate it, often times is discarded because there’s a real risk that if you use one of those organs that it may not function well and then you’ve taken a patient who is on dialysis and potentially stable and then you’ve exposed them to an organ that doesn’t work and makes it less likely they can get another transplant.
Kaitlin Benz: According to Brakeman, there are some organs that just need to be discarded because it’s thought to be too risky to try to use them.
Darren Stewart: Some of those are not transplantable, a lot of them though do seem to be potentially transplantable, even though they may not be ideal.
Kaitlin Benz: This is Darren Stewart, a researcher at the United Network for Organ Sharing, known more commonly as UNOS.
Darren Stewart: So what about these kidneys that may have transplant potential, but may not be quite ideal? I think there are a lot of patients that would benefit from some of these organs that aren’t being used today. The medical decision-making around these less than ideal kidneys or organs in general is highly complex.
Kaitlin Benz: Highly complex because the transplant surgeons who decide whether or not to accept a less-than-perfect kidney have a lot to consider. The government evaluates the 261 transplant centers in the U.S. by their one-year post-op success rate, which generally ranges between 90 to 95 percent. Ideally, all of a program’s transplanted patients are still alive and well after a year, but that’s just not always going to happen. For their program to be considered successful, doctors need to have a high success rate, which means they have to closely consider how much risk they’re able to take on donor organs. What if they accept a less-than-perfect kidney and the patient dies six months later? Here’s Ron Gill.
Ron Gill: And so, ok, if I’m being measured on a one-year survival, I don’t want to take a kidney that has a greater risk of not working in a year. However, what’s dawning on us all is the comparator can’t be them not working as well. The comparator is the waiting list.
Kaitlin Benz: He says measuring success by one-year survival rates can disincentivize surgeons from even trying on those borderline, suboptimal kidneys that may not be perfect, but might give their patient a few more years of health and freedom than dialysis would.
Ron Gill: It kind of puts a stranglehold on innovation in my view. And many of us in the field feel that if you’re going to hold people to a very high standard and we keep losing so many people on the waiting list every year, what is it going to take to make that change? There are groups that are probably being punished for some of their lesser outcomes because they’ve taken greater risks. And again, we all probably made a mistake if we’re comparing their outcomes with other centers rather than comparing their outcomes with the waiting list.
Kaitlin Benz: This is something Scalea has also thought a lot about.
Joseph Scalea: I think that the success rates are kind of arbitrary and in my mind there’s so much regulation that people are fearful of trying to help patients with organs that might be a little bit out of the box because they don’t want to get in trouble.
Kaitlin Benz: The “trouble” he’s referring to affects more than just the transplant surgeons. It affects everyone involved with the transplant center, including every patient on that center’s waitlist. If the center’s one-year success rate dips too low, or they don’t do enough transplants to accurately track their success, they risk losing federal funding. And that means the entire center could be shut down, leaving hundreds of patients scrambling to find a new center and join a new list. And those transplant centers are not always close to one another — 11 states only have one transplant center. A patient might have to uproot their entire life and move to get on the new list, all while finding a new dialysis clinic near their new home.
Joseph Scalea: If you really slap the hammer down on surgeons and say if you don’t perform at this level, you’re gonna get into trouble, then what happens? Then surgeons do fewer transplants ‘cause they only do the ones that they know will work with guaranteed success. And that’s crazy because what does that mean? That means fewer people get transplanted and more organs go in the trash.
Kaitlin Benz: There’s some things transplant centers simply can’t budge on when it comes to health and safety. A kidney that’s out of the body for too long or is too damaged isn’t safe to transplant into someone, just like it would be unsafe to transplant a kidney from a donor with an incompatible blood type. But what we’re seeing now is many transplant centers, are beginning to push the envelope and use kidneys that wouldn’t traditionally meet the very strict criteria to be considered viable. We want fewer organs going into the trash, and we’re in a place where we’re just trying to get more people off the waitlist before they die on dialysis waiting for the perfect kidney to come along.
Valerie Chipman coordinates the kidney transplant exchange program at UCSF Medical Center, which has one of the largest wait lists in the country. She says a center like that can afford to take more risks than most.
Valerie Chipman: We want to be accountable and we want to give good care to all patients. That said, when you have a smaller wait list, one bad outcome can significantly change your percentage.
Kaitlin Benz: Transplant centers in major cities like Denver, where Gill works, and in San Francisco, where Du lives, don’t have to worry as much as centers in small cities or rural areas. Those small-town hospitals do fewer transplants each year, and for them, one bad outcome could devastate their success rate.
Valerie Chipman: Luckily at UCSF we have a little bit more flexibility because we can maybe have a little bit of that “let’s take this marginal kidney for this person who is otherwise not going to do well on dialysis” and we can take that and try to do that for them. So, while we definitely want the higher standard of care, we need to be careful from a disincentive from trying to take, like you were saying, those discarded organs because if they’re marginal you might be gun shy to bring them in.
Kaitlin Benz: In Northern California, the waiting list is longer than in most places. On average, the wait times are anywhere from seven to 10 years for a deceased donor kidney transplant. Keep in mind that the lifespan of a person on dialysis is typically not much longer than five years. So in places like Northern California, doctors are trying to find as many potentially viable kidneys as possible. And in the last couple of years, transplant medicine has made big strides in doing that. Just this spring was the first successful transplant from one HIV positive person to another HIV positive person in the United States. Another step was beginning to transplant kidneys from donors with Hepatitis C into Hep C negative recipients. Just a few years ago, organs from Hepatitis C positive donors would have been considered too risky and discarded. That’s because treating the disease used to be challenging. The treatment was time consuming and had serious side effects. But a new line of antiviral drugs are nearly 100 percent effective at treating Hep C quickly, and now a transplant recipient with a Hep C positive kidney can just get treated after the transplant.
Valerie Chipman: I’ve seen a patient very very difficult to match who was Hep C negative who was able to accept a kidney from a Hep C positive patient. That wouldn’t have happened prior to this being available. And that person, they’re looking for needle in the haystack, so if you can get more of an option it can help more patients and then leave more kidneys for others. So not a huge number, but again, all these little bits and pieces are gonna help the organ shortage as the small pieces count and add up.
Kaitlin Benz: And while it may seem like such a small number of people with conditions like HIV and Hep C have organs to donate, every single organ counts. Prospects for outliving kidney disease are stronger than they’ve ever been in human history. Dialysis and transplants make that possible. Over the next few years, more government oversight on the transplant industry introduced by the Trump administration may streamline the process even more, holding organ procurement organizations accountable for collecting as many potentially viable organs as possible. The question for Du, and others on the list right now, is whether it’ll be soon enough for them.
Wilson Du: Life’s never the same. It’s what you make of it afterwards. And you’re being told to restrict this, restrict that. You can’t do this, you can’t do that. So, what did I lose? I lost my independence. But, you know, what did I gain out of it? You know, out of these depths came the strongest me that I’ve ever seen in my life.
Lydia Chain: Kaitlin, thanks so much for bringing this story to us. I know that many patients, while they are on the official waitlist for a deceased donation, also look for someone to do a living donation — to donate one of their own kidneys. Is that an option for Wilson?
Kaitlin Benz: It is an option, and he’s looking for a donor because it’s a great way to get a kidney and off dialysis faster — but he doesn’t have anyone in his life right now that is a good enough match. So one option for cases like that is called a paired kidney exchange. That’s when two patients each have a person who wants to donate but isn’t quite a match for them, and they essentially swap loved ones, so each patient ends up with a kidney that works for them. I actually talked to Al Roth, an economist at Stanford who pioneered this system. This is what he had to say about it.
Al Roth: Sometimes the exchanges can be bigger and more complex than just an exchange between two pairs. In particular, sometimes a chain is initiated by a non-directed donor, a donor who would like to give a kidney and doesn’t have any particular recipient in mind. And so, the non-directed donor will give to a patient who is waiting for an exchange and that patient’s living donor will give to another patient and those chains can go on for a long time and they now account for a lot of transplants in the United States. That makes organs less scarce. It makes transplants less scarce. It makes kidney disease more curable.
Lydia Chain: Now, the number of living donors has stayed under 7,000 a year over the last 20 years, right?
Kaitlin Benz: That’s right.
Lydia Chain: So, what’s the barrier there, why aren’t there more living donors?
Kaitlin Benz: Well, a huge part of it is money and time. Most Americans only get around 10 sick days off from their job a year, and recovery from surgery can sometimes take up to eight weeks, and for a couple of those weeks you can be pretty immobile and need someone else’s help. That’s a financial burden that a lot of people just can’t bear. There’s also not yet any legal protection from things like increased life or health insurance premiums, so donating can have a pretty huge cost. The Trump administration recently said they plan to improve the living kidney donation process to alleviate some of that financial burden. The proposal would increase payments to living kidney donors to cover some of their expenses like lost wages and childcare. Right now, it’s still pretty unclear when this will take effect and where the money would come from to do it, though. But nearly everyone I talked to thought that if we want to end this kidney crisis, supporting living donation and educating people about it is the way to do it. Here’s Chipman and Gill.
Valerie Chipman: If everybody was willing to be a living donor, if they were qualified, we would solve the shortage right there.
Ron Gill: That’s the bottom line is if the entire country was willing to be an organ donor, then we could extinguish the waiting list in short order.
Lydia Chain: Kaitlin, thanks again. Kaitlin Benz is a freelance audio producer based in Denver, Colorado. Our theme music is produced by the Undark team, and additional music in this episode is Lightless Dawn by Kevin MacLeaod. I’m your host, Lydia Chain. See you next month.