Jeffery DelViscio: [00:00:00] Welcome to a very special episode of Science Talk. I'm Jeff DelViscio, senior multimedia editor at Scientific American. For months Undark magazine has been working on an incredibly ambitious five-part series on chronic kidney disease. It's called Profit and Loss: America on Dialysis. Scientific American partnered with Undark to tell this vital set of stories, which goes live today, Monday, December 14th, on both Undark and Scientific American. A new piece will run every day this week. So check it out on undark.org or scientificamerican.com. Today. We're going to talk through how the project came to be and why the subject is so very under reported with the lead reporter for the series, Carrie Arnold. Carrie Arnold is a Virginia based freelance science journalist. You can find her work at Undark, Nature, Scientific American, National Geographic, and a slew of other very excellent publications. Thanks for joining us, Carrie.
[00:01:02] Carrie Arnold: [00:01:02] Thanks for having me.
[00:01:04] Jeffery DelViscio: [00:01:04] Let's jump right in. Let's give our listeners some grounding, Carrie. Let's talk about the reason for this series. How did you build it out and what are the different pieces about.
[00:01:13] Carrie Arnold: [00:01:13] Sure. So I first became interested in kidney disease in America after, um, my mother-in-law was diagnosed with kidney disease, um, probably about a year and a half ago. And I just started looking into the topic out of curiosity and out of ways to be more supportive and help answer some of her questions that she had about what were the best ways to maintain what kidney function she had left. And as I started diving into the topic, I began to learn just how complex and widespread kidney disease and kidney failure was in the United States.
[00:02:01] And as I started looking into the topic more and more, um, I received a notification from the National Institute of Health Care Management about some reporting grants that they had available. And I spoke with my editors at Undark about the idea of applying for one of those grants and we thought that this would make the perfect topic.
[00:02:27] And so after we developed this idea of wanting to look into kidney disease and kidney failure, we had to begin to narrow down the topic and get, you know, look into more specific parts of the problem. And one issue that kept coming up over and over and over again, were a lot of the health disparities that were inherent in kidney problems, especially in the U S.
[00:02:59] And so that was sort of the thread that runs through each of the five stories that we are telling. And the, the first story is about dialysis itself. Um, and what dialysis is like the challenges that people on dialysis face and also the big business of dialysis and how that steers health policy in the U.S.
[00:03:28] The second piece is looking at conflicts of interest within dialysis, because for many dialysis centers, um, they are co-owned by physicians who may be treating their own patients within the dialysis center. And of course that may create conflicts of interest because how well the dialysis center does directly impacts a physician's bottom line. Um, and so I'm looking into the challenges of actually determining how many of these centers are co-owned by physicians and what that means for patient care.
[00:04:09] The third piece, which will appear on Wednesday is looking specifically at the health disparities that people on dialysis face, both when being treated on dialysis and also in terms of waiting for transplant, because getting a transplant and just getting on the waiting list is very challenging and time consuming, and not everyone has an equal shot at getting a transplant.
[00:04:43] The fourth piece is about a new type of kidney transplant, um, in which surgeons are beginning to use, what's known as increased risk donor kidneys. Um, those that are either thought to be infected with hepatitis C virus or are known to be infected with hepatitis C, um, as part of the opioid epidemic that's been hitting the country over the past decade or so there's been a dramatic increase in people who have died of opioid overdose. And one thing that people have noticed is that their kidneys and other organs are generally very, very healthy because many of these overdose victims are tragically very, very young.
[00:05:39] And so their organs are very healthy and very good for transplant, but they also have a very increased risk of having hepatitis C. But now that there are treatments for hepatitis C out there, they're very expensive, but they're also much more effective and much safer than previous treatments. Um, people are beginning to try and years these hepatitis C positive kidneys for transplant, um, and patients now have to face the dilemma of, do they accept a hepatitis C positive kidney?
[00:06:17] And the series we'll finish up by looking at hospice care and end of life care for individuals with kidney failure. Despite the fact that the utilization of hospice care has been growing in the us over the past several decades, not just for cancer patients, but also for those with heart disease and lung disease, um, kidney failure patients, and those on dialysis really haven't been utilizing hospice.
[00:06:49] And one reason for that I found out is that when. A person with kidney failure, elects to start hospice care, they must discontinue dialysis. Um, and if someone stops dialysis, they typically die within a week or so. Um, even if they might have. Uh, another, say, cancer diagnosis that they could survive for another couple months.
[00:07:19] Um, if they don't receive dialysis, um, they typically only have days to a week or two. And so I've been. Uh, looking into why that is and what can be done to better improve end of life care for people with kidney failure.
[00:07:37] Jeffery DelViscio: [00:07:37] So that's an incredible span of subjects for one Oregon. Right. That's it sort of cuts across research. It cuts across business. It cuts across inequities. It cuts across disparities in care and structural racism. It's a picture of the entire system, them in one organ and one set of treatment. Right?
[00:07:58] Carrie Arnold: [00:07:58] Yes. And what's ironic is that your kidneys are sort of the unsung heroes rows of your body. We worry a lot about heart failure. We might worry about what happens if we stop breathing, or if we get some sort of brain injury, um, or at least if you're on the slightly hypochondriac side, like I am, um, I, I think about these things fairly regularly, but you know, I generally don't worry a whole lot about my kidneys. Um, that's just not really on most of our radar because they do their jobs silently.
[00:08:34] And it's only when they have a problem when they completely stop working that we noticed that there's a problem. And so kidney failure is both captures this sort of biological issue of the kidneys being super important, but they're not as sexy as cardiology or something. And it's also a very societal measure in that we talk a lot about the expenses of cancer treatments and, and all these things.
[00:09:09] But when you look at it on a per patient basis, treating somebody on dialysis is generally far more expensive. And so it really kind of captures both these broader cultural societal issues. And it also plays out within the body itself.
[00:09:28] Jeffery DelViscio: [00:09:28] And we have actually as part of the series, a, an animated explainer that really gets into visualizing some of the process, what happens in the kidneys, how they work, how they fail and you know, how the system all comes together. But I wanted to step back for a second because as big of a problem as chronic kidney diseases in a normal year, and 2020 certainly was not a normal year, you would go about a series like this by getting out there and finding people. And that was really tough this year. Talk to me about the challenges of reporting this during a pandemic and, and maybe more importantly, what are the challenges the pandemic has laid on top of the people in the reporting itself -- the people with the disease?
[00:10:12] Carrie Arnold: [00:10:12] So I first really started working on this series in earnest, back in January, where COVID seemed really far off. And I was all set to start to travel out to California, to work on the first story in the middle of March when the coronavirus started shutting everything down and I didn't feel I could in good conscience travel to meet with people and risk spreading infection to individuals who are at very high risk for serious illness and death.
[00:10:51] So I kind of had to go back to the drawing board and start all over. Um, luckily I had pretty good luck during a lot of reporting and interviewing by phone and by video chat, um, that actually worked out really well. Um, I had to get kind of creative to create the seem sense of place and person that is normally pretty straight forward to do when I'm meeting with someone in person and I'm spending time with them and living their day to day lives with them.
[00:11:30] Um, it's, it's pretty straightforward and it's much harder to do over the phone. But, um, you know, I mean, w what I faced was a hassle, it was an annoyance, but compared to what a lot of the people that I was spending time with, it really was peanuts compared to what they we're facing. Because no matter how bad COVID got or how daunting the risks were, people with kidney failure, can't miss a single dialysis treatment. Not one. Um, and, and kidney failure disproportionately affects those with fewer resources. And so when the financial impacts of all of the shutdowns and, and business closures and stay at home orders really began hitting people, they really had an impact on people with kidney failure and communities of color.
[00:12:34] Um, and this, this happened at the same time as many of their expenses were going up because if they had historically taken public transit to dialysis, um, with the risks of the coronavirus infection, public transit was really not a safe option because of how many people were also on board. And so they had to rely on pricier ride sharing or, or taxis.
[00:13:07] Um, and so what happened is, um, the American kidney fund, which is a large national nonprofit that helps individuals, um, with health insurance premiums, um, they, they started a special mini fund to provide a one off $250 grants to needy patients. And most people said they actually needed the money just to buy food.
[00:13:34] And so aside from the financial impacts, um, a lot of the patients had to stay really isolated and they lost the valuable social contacts from just seeing friends and family or going to religious services and all of that. And especially when if people lived in areas where friends and neighbors didn't always wear masks, um, many found themselves isolated at home for months on end. One, uh, nephrologist in New York city who I talked to said that one of his patients reported that he basically had to lock himself in his basement apartment for six weeks because in, in March and April, because infection rates were so high in New York city.
[00:14:21] Um, and so interestingly, the, the risks of going to a dialysis center three times a week also led to a surge of interest in what's known as home-based dialysis, um, where instead of going to a center, um, you do dialysis at home every night. And it's been in, in 2019, president Trump began promoting a comprehensive kidney disease treatment plan for the United States and getting more patients to switch to home-based dialysis was one of the central pillars of this plan. And there's, there's good reason for one it's more cost effective. It's also easier on the body and generally does a better job of treating kidney failure because you do it more frequently and over a longer time span. So it also gives you a better quality of life. But the problem was that, uh, Trump's plan didn't really spell out how to make this happen. Um, and so as COVID struck, a lot of people were really beginning to think through how to make this happen.
[00:15:43] And. What happened with COVID is that it ended up doing what no health policy really could and getting large numbers of patients to switch to home-based dialysis. Exactly how many people made the switch still really isn't clear, but it seems to be a fairly substantial number and how that will impact the kidney disease landscape really remains to be seen.
[00:16:10] Jeffery DelViscio: [00:16:10] So COVID is complicating all of our lives, none more so than people with chronic kidney disease and already complicated balance of life and medical regularity. Really. It's a fascinating. Story. And it's also just a, sort of a crushing burden to have this pandemic on top of an already really difficult condition.
[00:16:34] I want us to hear from some of the people you spend time with. So before we hear those voices, we wanted to make note that the reason we were able to get in front of people to take their pictures, to take video, take their voices in person was because Larry C. Price, the photographer videographer who held down the entire series with Carrie was incredibly careful in the field.
[00:16:57] He distanced whenever humanly possible. He masked up. He was very careful about reporting, especially around subjects who were health compromised and Larry's work out in the field, amid a pandemic is the reason why we're able to hear these voices with such closeness and intimacy. So thank you Larry for doing that.
[00:17:19] So Carrie, tell me about Jo Karabasz. We meet her in the first sentence, in the first piece of the series. Why did her story stand out to you? But before you answer that let's hear from Jo herself Here she is.
[00:17:32] Jo Karabasz: [00:17:32] I do the kind of dialysis called hemodialysis. In that process, they actually put two needles in my arm and my blood is directly filtered and cleaned in the circulator.
[00:17:44] It takes about three and a half hours. And we do that two days out of three, right around the calendar. I was diabetic for about 10 years. And that's what finally caused my kidneys to slow down and die. I was also pretty sick and pretty huge. I had gained a lot of weight, both from fluid and just because then I wasn't feeling well and didn't move.
[00:18:07] Once I started dialysis, I decided I was going to live after all and I was going to lose the weight and I was going to get on the list and it took me four and a half years to do that. I've got my life back now and I'm holding onto it.
[00:18:22] Carrie Arnold: [00:18:22] So the first thing that really struck me about Jo was just how friendly and open she was about the challenges of kidney failure and how hard it can be to just make it through the day. And one of the other things that I really appreciated was just how common her story was. Um, she had diabetes and that was what led to her kidney failure and diabetes is, along with hypertension, is the two leading causes of kidney failure in the U.S. Also her illness meant that she was no longer able to work as a high school English teacher because she had to spend 12 hours each week at a dialysis center where a machine who Jo nicknamed Rocco, my robot kidney, cleaned her blood.
[00:19:20] Um, but her, her unemployment caused financial hardship and Jo depended on financial assistance from the American kidney fund to help pay for her health insurance premiums and copays to, to make ends meet. So it was this combination of Jo herself being just a wonderful outgoing person. And also how much her story illustrated so many people's struggles.
[00:19:50] Jeffery DelViscio: [00:19:50] Let's hear from another one of the characters in your story.
[00:19:53] Bernard Zachary: [00:19:53] I wasn't taking care of my body like I supposed to, because all I wanted to do was work. My feet would swell for about maybe a week or so. So. I didn't know the situation. I just thought it was swollen just to be swollen. The way I'm sitting up now I'm okay breathing. Um, but soon as I lay down at night for the night I lay flat and then it's like hard for me to breathe. Like I'm struggling to breathe. It's like, I can't, I can't. I can't breathe normal. I'm gasping for air. So that's how it was feeling. I'm Bernard Zachary. I have end stage renal disease. I've been waiting on a kidney for about four years.
[00:20:44] Jeffery DelViscio: [00:20:44] So tell us about Bernard. And could we talk about transplants? What is the need and how long do recipients have to wait? Typically?
[00:20:52] Carrie Arnold: [00:20:52] So Bernard is from a, uh, city in Northern California, Modesto, and he has been on dialysis for several years now. Bernard represents the more than one third of dialysis patients who do what's called crashing into dialysis. And this means they either don't receive specialized care from a nephrologist before they start dialysis or like Bernard they don't even know that they have a kidney problem until they show up in the emergency room with, with severe health effects and they need to start dialysis right away in order to save their life.
[00:21:36] So the average wait time in the U.S. for a kidney is around 3.6 years, according to the organ procurement and transplant network, which is sort of the organization that collects data and oversees a lot of the organ transplant process in the U.S. Um, wait time can vary based on your blood type, based on your, what they call, how sensitized you are, basically how close of a match they need to find for you.
[00:22:11] Um, and it waiting time is also determined by how long you have been on dialysis. So the longer you've been on dialysis, the more priority you get. Um, and, and there's a huge demand for kidneys. Um, nearly 92,000 people are currently waiting for a kidney transplant and every day 13 of them will die while they wait. Even more, will become too ill to actually get a transplant and will end up coming off the list.
[00:22:47] So it's, it's a huge problem. Um, One important thing to remember is that a transplant is it's another treatment for kidney failure. It's not a cure. Someone who gets a transplant will need to be on anti-rejection medication that suppress their immune system for the rest of their life. However, the risk of death and the quality of life is much better compared to being on dialysis.
[00:23:20] And so. From most patients on dialysis, the goal is to ultimately receive a transplant.
[00:23:29] Jeffery DelViscio: [00:23:29] Receiving the transplant is the goal we're going to hear from two people that have, but they have different stories. First let's hear from Brian Carroll.
[00:23:39] Brian Carroll: [00:23:39] What I've learned is that whatever you're going through, someone else's going through something 10 times worse. I'm 41 years old. And the cause of my kidney failure was an auto-immune disease. I received a call on July 10th and I had just had a conversation the day before with my partner. Cause I, I was waiting so long. I just didn't think I was ever going to get the call. I remember I was in the hallway and I leaned against the wall because it was so surreal.
[00:24:13] It was like a dream. I was happy. I didn't know how to act. I was in shock to be honest with you, but it really was happening. I'm Brian Carroll. After five years of being on the transplant list, I finally received the kidney.
[00:24:28] Jeffery DelViscio: [00:24:28] So that's a pretty incredible moment in his life. It's life changing really, isn't it? Getting the kidney transplant?
[00:24:35] Carrie Arnold: [00:24:35] Yeah, absolutely. I mean, everyone who I spoke with can tell me of the exact moment when they got the call, they can tell me the date, what time of day it was practically what they were wearing, where they were. Everything. Um, it it's really one of those life defining moments and it just as getting a diagnosis of kidney failure really changes their life.
[00:25:03] I mean, so does getting the kidney transplant. And a lot of it is very positive changes. You're you're no longer have to run your life around getting dialysis. You can travel more. You have a lot more freedom. You don't have to stick to the, the incredibly strict diet and, and fluid requirements. Um, Jo told me that for the last five years, since she's been on dialysis, she's basically been thirsty the entire time because she can't drink much water because it will overload her kidneys.
[00:25:41] I mean, I can't, I can't even imagine that. I mean, I've been sipping on coffee here as we talk and I can't imagine not being able to drink water when you're thirsty. And, you know, dietary requirements, you have to watch your protein, you have to watch your salt and phosphorus and other electrolytes and that sort of thing.
[00:26:04] And, you know, running your life around dialysis, it's a huge change. And getting that transplant is also a huge change because. It's suddenly your life goes back to quote unquote normal, whatever normal is. Um, and so a lot of patients it's incredibly freeing. One person I spoke with Patrick Gee said that his worst day with a transplant is still far better than his best day on dialysis.
[00:26:37] Um, there are potential downsides, many patients when they go to a dialysis center three times, each week, they develop a lot of friendships with the other patients who sit next to them and with the support staff of the dialysis center. And so making those adjustments can also be hard, even if transplant is ultimately a very good thing. And I think it's important to acknowledge that.
[00:27:06] Jeffery DelViscio: [00:27:06] Yeah. It's, I mean, you think about it as this thing that's sustaining your life -- every single treatment is keeping you from dying, but there are some things that it infuses, you know, apart from clean blood or cleared waste from your kidneys. And that, that has to do with these intangibles is social aspect of it. And that's really important, but you know, the transplant still as a sort of shining goal, right for a lot of people. And that kind of goal, that desire to get off dialysis it started to push people to take some risks. And I want to talk a little bit about some of those risks, specifically around higher risk organs. And we're going to hear from someone who's still waiting for an organ for a kidney, Traci Evans-Simmons.
[00:27:56]Traci Evans-Simmons: [00:27:56] Three years ago, I had to go on dialysis. So this year when I went up to Wake Forest for my transplant evaluation the nurse offered me something that was new, which is receiving a Hep C organ. At first I wasn't too thrilled about it. Um, but uh, the thought of being on dialysis for years just wasn't something that I wanted to do. So I was, you know, I decided that I would get on the list or at least try to get on the list. I did talk to a couple of family members. Some people said don't do it. It sounds very experimental.
[00:28:33] And in the past, I guess they weren't using those kidneys. Um, but now that there's a cure, they're offering them the wait time is much shorter, I guess, because of the availability, which is definitely what made me change my mind about it. The wait, the shorter wait time. Um, I'm told that there is medication that you take in case you are positive, or I guess as a prophylactic for it. You're already on a lot of medications from the transplant in general. So to me, what's just one more, if it means getting off of the dialysis and just having a little bit of an easier quality of life? I'm Traci Evans Simmons, I live in Charlotte, North Carolina, and I've been on the transplant list for three years.
[00:29:17] Jeffery DelViscio: [00:29:17] So it seems like Tracy's really been weighing the options here and she's decided. To try for this. Can you tell me a little bit about her and, and the situation she's in?
[00:29:29] Carrie Arnold: [00:29:29] So Tracy lives in Charlotte, North Carolina, and she developed, uh, kidney disease and kidney failure. Thanks to an auto-immune condition called it's one of the most tongue twister of all medical conditions. Um, it's called glomerulonephritis. And basically her immune system attacks her kidneys and ultimately damages them to the point where they can no longer do their job. And she's been on dialysis for several years. And this year, um, in early in early spring or late winter, uh, just as COVID was really ramping up her transplant team approached her with a very new proposition and asked her whether she would be willing to consider receiving a kidney from a donor who had hepatitis C. Hepatitis C, if you don't know, is a virus that attacks the liver.
[00:30:32] Um, it's a chronic virus, meaning you don't just get it and get sick and get better like the common cold. It will stick around in your body, um, in about three quarters of patients often for life. And it can cause liver failure and liver cancer. It's primarily transmitted through the bloodstream. So before people started testing for it, a lot of people got it via blood transfusions and ironically enough via dialysis equipment that wasn't cleaned or sterilized properly.
[00:31:07] That's not as much of a problem anymore, but it's still somewhat of an issue. But, um, it's become more of an issue thanks to the opioid epidemic and people who inject drugs are at very, very high risk for contracting Hepatitis C. After one year of regularly injecting drugs and on shared equipment as many as half of people will contract hepatitis C and three quarters of them those people will develop a chronic infection.
[00:31:47] So given that the, the tragic high rate of deadly overdose, um, a lot of those are actually very good organs to be used for transplant. And so what people are finding, especially now that there are treatments for hepatitis C that are very effective and don't have a high burden of side effects like previous treatments, um, they're finding that it's possible to transplant organs in someone who is either thought to be potentially hepatitis C positive or is known to have hepatitis C and use them for transplant in, in kidney patients. Um, what the they do is they generally transplant the organ from someone who has hepatitis C and they start treatment right away sometimes even before the patient is wheeled into the operating room. It doesn't prevent them from actually getting the hepatitis C virus, but it does prevent them from actually developing any sort of organ damage from that. But it's a risk. The existing studies have all shown that everyone who has received a kidney from a hepatitis C positive donor has ultimately cleared the infection, but sometimes it's taken several rounds of treatment with different antivirals, and there is concern that perhaps, this might not always be the case. The drugs are 95% effective at least, which is great considering that previous hepatitis C treatments at best cured, only 50% of patients. And that's if they could tolerate the treatment long enough for it to work. So it was a huge advance, but the treatments are very, very expensive.
[00:34:00] And 95% cure rate still isn't a hundred percent. And so there's legitimate concern that a patient could receive a kidney from a hepatitis C positive donor that might treat their kidney failure, but it could potentially leave them with chronic hepatitis C disease and the subsequent liver problems that result from that.
[00:34:27] And it's a lot for. People with kidney failure to, to contemplate. And it's one thing to do. So in a very hypothetical way, um, you know, kind of the, the biggest game of would you rather that you can think of, but it's very different when it's actually you and you're contemplating that and trying to evaluate, should I take this kidney now?
[00:34:52] Or should I potentially wait? And see if something better might come down the line. And that's the dilemma that Traci and lots of others with kidney failure are currently having to contemplate.
[00:35:05] Jeffery DelViscio: [00:35:05] Well, it seems like a tough choice when you're already facing a series of tough choices, but you know, potentially with, with some hope and some upside, given the, the advances in, in fighting Hep-C and treating Hep-C.
[00:35:18] I just wanted to finally step back and ask you about the series in general and what you think it might accomplish or what you've seen in the years reporting of the system and how it might change, how it could change, how it might be forced change, or it should change in years going forward?
[00:35:38]Carrie Arnold: [00:35:38] I guess my first goal with the series is simply to get people talking about kidney failure and kidney disease more because even if you're diagnosed with chronic kidney disease, before your kidneys have completely shut down, there are very effective medications and diet and exercise plans that can really help slow kidney disease progression and, and even, you know, stall it completely. So in that sense, knowing you have a kidney problem is really important because it can keep you from progressing to kidney failure. And if you do progress to kidney failure, knowing ahead of time can give you more choices with what dialysis you want to do and how you want to start it.
[00:36:29] And all of those things, which leads to better outcomes. And some people can even get a preemptive kidney transplant, which means they don't even have to go on dialysis. If they know their, their kidneys are well on the road to failure. And there's, you know, at that point, there's not really a chance of reversing it or that sort of, that, that kidney failure is really inevitable.
[00:36:57] Um, some patients can get transplanted before they even have to start dialysis. So in that sense to me, those are really great things. And you need to know you have kidney problems. And because the symptoms are silent, I mean, you could be almost in complete kidney failure before, you know, you have a problem.
[00:37:19] It could really only be detected on blood tests. So just getting people talking about kidney disease is really important because it raises the profile. It makes people aware and that means they can be more likely to be able to get tested and get treated before kidney disease becomes really life-threatening.
[00:37:44] And the other thing is I really kind of wanted to look at a lot of the complicated nuanced issues surrounding kidney failure and kidney failure treatment that people face that really just aren't discussed. It's hard to talk about some of these things in a short, short newspaper article, or even a standard magazine piece.
[00:38:11] You need a lot of space to really dive into these complicated issues and what it means for patients everyday life. Um, you know, what, what a Medicare rule means and reading all of these really ungodly dry Medicare policies isn't very entertaining, but when you look at how it impacts people's lives, you see just how important it is.
[00:38:40] And even small policy changes can really have a big impact down the line. And I think it's important for policy makers and physicians to be able to get a better idea of what it's like for people on dialysis every day and what they need to improve their lives. And the best way to do that is just to sit down and ask them.
[00:39:10] Jeffery DelViscio: [00:39:10] Well, I'm glad we were able to talk about it to start the conversation. It's an incredibly nuanced, detailed and thoughtful body of reporting. The series is Profit and Loss: America on Dialysis, and it was a co-production between Undark and Scientific American. And I'm so glad we were able to work on it together. Carrie, congratulations on the project. And thank you so much for joining us to talk about it.
[00:39:33] Carrie Arnold: [00:39:33] Thank you for having me.
[00:39:34] Jeffery DelViscio: [00:39:34] This is Science Talk. I'm Jeff DelViscio.