The Kidney Collective: "I Found the Bright Lights and the Silver Linings"

Donna Cryer: If you're a student of patient advocacy, you really see that what pushes the field forward, yes, are medical advances, it's great. But from a policy perspective and a problem-solving perspective, there's usually a patient or patient family behind it. Certainly in the rare disease community, you see that to be true.

LaVarne Burton: Hello, I'm LaVarne Burton.

Tamara Ruggiero: I'm Tamara Ruggiero.

Mike Spigler: And I'm Mike Spigler.

LaVarne Burton: Welcome to season two of the American Kidney Fund's Podcast, The Kidney Collective, which gives an intimate voice to the many facets of living with kidney disease.

Tamara Ruggiero: Our theme for this season is Rare Voices, Relatable Stories.

Mike Spigler: Over the next few months, we'll be talking about rare kidney diseases and explore the shared experiences that connect the entire kidney community.

LaVarne Burton: Join us for these candid conversations that offer both information and inspiration.

We're thrilled to begin this season, Rare Voices Relatable Stories, with Donna Cryer. Donna has transformed her own experiences with health care, including a liver transplant, into opportunities to design and build cross-sector collaborative solutions. She built a public policy institute in the payer space, advises diagnostic and digital innovators, founded a global nonprofit patient advocacy organization, and currently serves on the board of Sibley Memorial Hospital, Johns Hopkins Medicine. She was diagnosed with an autoimmune disease, a type of rare liver disease, shortly after graduating college, and received a liver transplant between her first and second year of law school over 30 years ago. Thank you so much for joining us today, Donna. And you and I have known each other for quite a while, and I have always been truly inspired by the way that you live your life fully. You've taken your patient experience and you've done so much just for the chronic disease community. Thank you for that. Now, you've been up to a lot over the years, so just tell us what you're doing now.

Donna Cryer: My husband says that I'm in a prolonged episode of Undercover Boss Home Depot edition as we moved from Washington, D.C. to Pennsylvania recently to be close to family. And so I have my first tape measure, and we're amidst renovations. And so it is a wonderful shift from very intangible things in the advocacy community, things that might take years to manifest, to tangible things that I can see the results of today. So that has been the most recent shift, but I've also, of course, you know, kept an ear and a toe and maybe some other parts in the advocacy community.

LaVarne Burton: Well, you deserve some time to deal with real things, and I can't wait to see the products. I'm sure they will be great. But tell me, you've dealt a lot of time with liver and various liver diseases. Sometimes people get a little bit confused between the liver and the kidneys. Tell me, it happens to us a lot. Do you find that people ask you questions about what's the difference between the liver and the kidneys?

Donna Cryer: Well, I'm always excited when anybody even mentions the liver. But yes, we had early surveys from when I started focusing on liver advocacy specifically, that only a third of people knew that they needed a liver to survive. So, you know, that was a starting point. And yes, when I ask people, you know, where is your liver, they'll start putting their hands behind their back and like, no, no, no, no, no, no, no, those are the kidneys. Your liver is up here, up front, tucked under the rib cage on the right. And so having to deal with just the basic understanding of where the liver is and the 500 plus essential functions that it does is job one. But we don't want people to ever forget that we are whole people and that these organs and organ systems work together. And so that's why from the very beginning, I have been always finding ways to tie liver health and kidney health together so that they both grow in understanding.

LaVarne Burton: You know, we have focused at the American Kidney Fund in recent years a lot on rare kidney diseases. Yes. There are some 150 rare kidney diseases, and I'm very excited about all of the discoveries that are going on and new therapies that are that are in the works and hopefully will soon be available to patients. Just a few years ago, something called APOL1-mediated kidney disease, or AMKD, was discovered, and there are therapies in the works for for that. This disease, AMKD, particularly affects people of African descent. Tell me, in the liver space, what's the situation with regard to rare liver diseases?

Donna Cryer: Well, I am I'm married to a geneticist, so I would and live with a rare disease. And so I would have been remiss if I did not build a pediatric and rare liver disease council as part of our work. And honestly, I had never met another person of color with my rare disease until I had to create my whole organization. And so I've been so honored to work on things like the Rare Disease Diversity Coalition that was uh, you know, started in partnership with the Black Women's Health Imperative and do other things to make sure that everything from the medical literature and training, the diagnostics, and just general perceptions by physicians and other providers, included the fact that people of color could have rare diseases and do have rare diseases, both kidney and liver. And I'm especially excited that one of the women who went through our Advanced Advocacy Academy has started her own rare disease organization. And so that there will be a focus for people of color by another black female founder that um we've seated in the community.

LaVarne Burton: You were diagnosed with liver disease at a fairly young age. And so many people tell us that, you know, and we can just imagine that receiving this diagnosis is so traumatic. And even more so when you're young. What was it like for you as a young woman just be just entering adulthood to find that that you'd been diagnosed with the challenge of liver disease?

Donna Cryer: Well, like many patients with rare diseases, the diagnostic journey was not straightforward. I went to so many different specialists in in multiple states. So as I was graduating college, I was getting very sick and losing the ability to walk and persisted in coming to Washington, D.C. Um, but was still meeting with various specialists who were doing everything from uh electromagnetic conduction tests on my nerves to finally finding a physician who reached out to a colleague of his in yet another state, in yet another institution, and took the time, which I'm so grateful for, um, to think a little bit more deeply. And uh he gave me a uh an injection of of you know fat-soluble vitamins and and that unlocked, that was the key. He was like, well, the good news is I think you know, I know what you have. The bad news is you're in end-stage liver disease. You know, to be an end-stage disease was just uh not certainly not what I expected to hear. I honestly thought I had just, you know, twisted my ankle or something coming off the elliptical at the gym. I mean, I thought it was something so simple, and it turned out to be something so complex. And I was already living with one chronic illness, inflammatory bowel disease, and then uh came to learn through that this next process that a portion of patients um with that autoimmune disease, it goes on to affect the bile ducts in the liver. And so I in short order needed to have both my colon removed and uh and the liver transplant. I think at that stage I still had so much confidence in the healthcare system that I was like, okay, let's do it. And so let me move on and get back to school. And my law school classmates, when we would have reunions, sort of laughed. They're like, if you thought you were gonna die, why could you go to law school? And I was like, you know, it never really occurred to me that this wouldn't work, you know, my faith was so strong and I knew God would do it and he had me for a purpose. And I'd always uh, you know, I was one of those people who wanted to go to law school to practice law, not just because my parents wanted me to or something. And so I just thought I would just persist, just keep on. That was my attitude, you know, at the time. I look back and some days I reached for the confidence of that of that young woman to help me at this stage.

LaVarne Burton: Youth has great advantages. We've always been so positive. Can you tell us more about the specific diagnosis that you received, the type of liver disease that you have?

Donna Cryer: So I have uh Primary Sclerosing Cholangitis. It is often confused for Primary Biliary Cholangitis. One is more often found in men and one is more found in in women, and and you know, I have the more uncommon um, you know, occurrence. And it does go into scarring the bile ducts leading into the liver. So there are a lot of tests to, much like uh biopsies, to understand what the inflammation is and how far the disease has progressed. There's blood work, there's a just a lot of invasive testing involved for me. Um because even though my diagnostic journey was short and I was so young, um, I was in very advanced stages of disease and so was very quickly also put on the transplant list. And I really appreciate that. Um, I think we know in both kidney and in liver, people of color are not uh referred for transplant at the same rates that other ethnicities are. And so I really appreciate that my team at Johns Hopkins referred me very quickly to transplant and were doing sort of simultaneously a transplant workup at the same time that they were trying to give me more, give me more time. But I had the narrative, I remember, because I saw recently as we um were unpacking boxes a picture of me from that, from that time. Um my eyes were so jaundiced, um, the bile had backed up into the systems. And so my the whites of my eyes were almost orange. And so of course that Halloween I went as a tiger cat. And, you know, I had the full suit and the and the ears, like, you know, Josie and the Pussy Cats or something. And I just went with it. And my friends are like, oh, how'd you get your eyes like that? I was like, mmm, yeah, I wish I could tell you the secret. So, you know, I just found the bright lights and and and the silver linings. I think about that, you know, now as I try to live every day um serving or laughing, um, because it could be my last. You know, I was transplanted out of the ICU. My mother was told that I had seven days to live. Um, you know, when she came to to tell me I had been accepted to one of the law reviews at Georgetown, she was nervously asking, like, what should I tell them? And I said, Well, tell them yes. I'm like, what? Crazy. I'm like, of course. And my I had full expectations that I, um, even though at that moment I was about 85 pounds, I was hooked up to every possible machine that there was. I had been in the ICU for for weeks. Even if they had told me I had seven days to live, I would have scoffed at that. And so, you know, I went to back to serve on on one of the law journals, the journal for uh, you know, fighting fighting poverty. And that is um, you know, that is my great blessing. So God and I were right. And that's usually how I go into most conversations. That God and I are a majority, and um we are just going to to do this thing. And so I think there are things that have traumatized me in my life uh since, but that was not one of them.

LaVarne Burton: That's an absolutely amazing, absolutely amazing way to respond to that kind of challenge, which you really can't imagine unless you've been there. You talk about the fact that you were ill during your undergraduate years as well. And you obviously, you know, got through that, but then, going into law school, it began to be much worse and you really started seeking out a diagnosis. But we know that people that that our patients that we deal with have a difficult time trying to get a diagnosis, especially when it's a rare disease. Yes. Tell me, why do you think it takes so long? Why did it take so long in your case?

Donna Cryer: Well, there's rare for a reason, you know. Um collectively, um, that's why I love one of the reasons I love the name of this podcast, collectively, rare diseases affect millions of people. But um, you know, having served on one of the specialty boards for the American Board of Internal Medicine that puts together the tests for doctors to become board certified, it was often a battle to get the rare disease questions onto the test. Other members of the of the board who were, you know, physicians often in leadership of their medical societies, you know, would say, well, you know, you don't see that often in practice, um, because it's rare. But my point was always if you're going to, you know, hang out the proverbial shingle, that you are a board-certified physician in this specialty, the expectation from your patients are that you'll be able to diagnose any of these diseases, not just the ones you see more commonly. I think that's the difference in having patients as part of these um boards, um, whether it's on testing or guidelines or what have you, because we have a very practical perspective and are important auditors of the system. Um, because we have an obligation that's different than the physician members, and, you know, not to impugn their commitment uh to their fields, but we understand the life and death nature of it, the the consequences, if they're wrong or if they omit something, means that someone doesn't get to go to law school, doesn't get to live their life, doesn't get to start advocacy organizations. And we feel that uh, you know, in the very marrow of our bones. And so when we're sitting in these places, there is a uh a passion that comes with the perspective that we just can't let something go. That is rare to have patients. I was often the first on that committee, I was the first on that committee, and and I'm the first uh in many, and it's my great joy that I'm not the last on in many of these places. But I think that's one of the reasons that the diagnostic journey is so long, particularly for rare diseases, because I've seen the the advocacy in a field, when you really look at it, if uh if you're a student of patient advocacy, you know, as I am, you know, in oncology and everything, um, uh you really see that what pushes the field forward, yes, there are medical advances, that's great, but from a policy perspective and a problem-solving perspective, there's usually a patient or patient family behind it. And so certainly in the rare disease community, you see that to be true across so many diseases, that it is a parent or a patient family that is affected and insists that there's progress. And so I think as uh, you know, your organization draws more uh focus and highlights these rare kidney diseases and their connections to other organ systems, there will be more families and more advocates who step forward and want to highlight and focus and change this dynamic. And so until that, until that happens, um we will, you know, we will still struggle. Um, but it's really advocates who are leading the way in showcasing how long the diagnostic journey is for most rare diseases, how few, you know, patients of color are often included in research, what you know, FDA, rare disease uh, you know, regulations and clinical trials need to look like. You know, that that is because of of advocates moving forward. So I think that's what it'll take in this space as well.

LaVarne Burton: You know, I couldn't agree with you more. A few years ago, we started a major focus on what we call unknown causes of kidney disease, UCKD. And it really refers to the fact that patients often don't know what's causing their kidney disease. And and it's very often a rare disease. It can be a genetically based disease. And it's as if the floodgates opened. When we launched that effort and started bringing people together, they just started coming from all places. And most of all, from patients who want to understand what's driving their disease, who may have gotten an incorrect diagnosis in the cause. Uh, even patients who may have gotten a transplant, and then the transplant failed because the underlying cause was not diagnosed and was not treated. And we're just opening so many doors and having such wonderful conversations to bring the entire kidney community into this discussion and to get to the bottom of this and to make looking for rare diseases more of a routine matter and to make more therapies available to uh to treat them.

Donna Cryer: Absolutely. And more researchers will come forward if they know that there's an active patient community, you know, fighting alongside them to make funding available and to help to progress their research as well. And so I think it's a really positive dynamic.

LaVarne Burton: Now let's move on and talk some more about your advocacy. Okay. What motivated you to establish the Global Liver Institute?

Donna Cryer: You know, I had been in deep prayer on the 20th anniversary of my transplant. And I wasn't at all sure that other patients coming behind me would have access to the same level of innovation and care that saved my life and sustains me today. And so, you know, I tried to sort of volunteer my way around it, but there really wasn't an organization that had the scope, the breadth, and really the sense of urgency that I brought to it as a as a patient. And so, you know, as Toni Morrison says, if you can't find the book that you want to read, it means that you were meant to write it. And so the Global Liver Institute was the book that I wrote to solve the several problems that I saw. One was fragmentation in the field. There were so many organizations doing very good work, but very local or very, you know, specific to just one type of liver disease. And I saw an opportunity to bring us all together and create this banner and this concept of liver health that would help us have the same impact, hopefully, that, you know, the American Heart Association and other organ-centric behemoths in the space that I respected and had worked with would have for liver. And uh the other thing was to eventually, uh, as I started a little further in developing it, I realized that I wanted to be able to pass on the different types of advocacy and expertise that I had developed across my career, whether that was working in clinical trial recruitment or communications or state and federal policy. And so our Advanced Advocacy Academy became that way that I could bring patients together and help them identify their talents and the pain points in their journey that they really wanted to change and equip them with the skills to do that. And that has been my greatest joy to see the graduates of A3, as we call it, starting their own organizations or or passing legislation in. Their state, or they've done so many wonderful things. You know, one has recently started a transplant medications navigation service to help people understand whether, you know, agnostic of transplants, so kidney transplants, liver transplants, heart, you know, you get the transplant, you think, okay, you've succeeded. And then you have to pay for the medications and you have to find that. And there are still gaps in policy, even with the ESRD program, even with Medicare. There's so many gaps in the way that uh patients are supported post-transplant. And it's exciting to see a graduate of my program stepping in to solve that problem. That that was the intent. Some things I didn't even uh know to wish for or hope for or pray for. So it's become so much larger than uh I had ever uh thought or imagined.

LaVarne Burton: And now you've been diagnosed with CKD, I've recently learned. Tell me about that and how that has impacted your life when you're also living with a liver transplant.

Donna Cryer: It is not uncommon for transplant recipients who have been out 10, 20. You know, I realize someone mentioned to me that every day that I live is changing the prognosis for liver transplant. Because when I was transplanted, they said, well, maybe you know it's 10 years. They didn't know it was such the dawn of the era, honestly. And the medications I was taking were still called, you know, FK 506. They had letters and numbers, not even names. And so it's not uncommon because of the medications, for there to be some level of kidney damage. That's not what I'm actually experiencing. And I am grateful for my experience in the rare disease space to ask for the doctors to look a little deeper. Really, my kidney disease is more of an effect of the chronic dehydration that I've experienced for so many years because of my inflammatory bowel disease. So I am responsive to fluids still. There are some days and some times where I feel like I failed my labs. I'm like, I failed my labs. My, you know, creatinine uh would be over two, and um, you know, other measures would would be, you know, quite quite alarming. And so, you know, there is some atrophy in my kidneys, and um, I have even been hospitalized for acute kidney injury on top of chronic uh kidney disease. And so um I'm so glad I made friends in the in the renal space all these years. I have some some good karma even from back in my days creating kidney care partners um and working on uh dialysis funding and reimbursement to uh all the all the time that you know we have spent collaborating as well. My blood pressure is much better since I left the CEO position, I'll just say. Um and uh, you know, I am privileged enough to get fluids at home, IV fluids at home. Even my doctors are like, what is that? How do you do that? I'm like, why don't you know? Why aren't you prescribing this to your patients? And so that has been helpful. Um, and and so we're continuing to to monitor. But, you know, as I even just two nights ago was advising um a patient, a close friend of mine, who just heard that she would need a you know, a kidney transplant. And I like, and you know, and her numbers are better than mine. Um, I'm just like, you know, uh God sustains, you know, and and so I I'm here for as long as he'll have me. I'm here for what he wants me to do. And um I'm here for na helping navigate other people through through the process um and asking questions. And I'm I'm enriched by by supporting them through their own experience. But it's difficult. One of the most difficult transitions is from, you know, a healthy person to get their first diagnosis and to become labeled with this identity as patient. It's something I've always embraced as my, you know, Instagram and other handles as, you know, DC patient. But as they add up at a certain number of diagnoses and challenges and rotations of specialists, you know, that I need to maintain, it's something that you need to make sure that I need to make sure that my own cup is full, that my own resilience and resources are um are replenished because it does take a toll to be able to, you know, stay positive and stay engaged and stay active while you are, you know, just uh, you know, monitoring and and trying to live your best life possible and to do the things that, you know, control the controllables, to to do the things that you can do and give the other things to to God and and good doctors. So that is where that is where I where I am. I'm just uh you know grateful that I knew as much about kidney health as I did liver health going into this so that I could um and can, you know, maintain as long as possible.

LaVarne Burton: You've had absolutely amazing challenges, but also the very good blessings of being able to get to the right providers at the right time, uh, together with, you know, of course, your faith has sustained you. Are there any thoughts that you have, any reflections on the U.S. transplant system that you'd like to share based upon the many years of experience that you've had?

Donna Cryer: Yes, I have shared my thoughts on the U.S. transplant system with both the House and the Senate finance committees. I am very grateful that the committees listened to us and that CMS and HRSA have been able to revamp and reissue the OPTN uh contract for the first time in what was 40 years, and also working on issues of data transparency so that we could really understand the performance of all the different parts of the transplant system. So I think that the transplant system undergoing um change right now, and also scrutiny of individual transplant centers. I've served on the Membership and Professional Standards Committee, and often the scrutiny and the and the oversight of individual centers was a little soft from my perspective as a patient and a former federal prosecutor. I am heartened to see that there are more visible actions being taken. So I think this is really a new era in transplantation where patients have been heard and we've partnered with Congress and the administration knows that, you know, it there is a public trust that is placed in the transplant system as a whole, from the organ procurement organizations going into communities to the maintainers of the of the lists um and the transplant centers themselves. And I'm so excited to see um advocates continuing to take that baton and keep running that race.

LaVarne Burton: What do you think we as advocates should be doing now? What's the thing that you think would make the greatest difference in terms of our advancing the cause, particularly of rare diseases? And the second part of that is what do you wish more people knew about living with a rare disease?

Donna Cryer: Advocacy can take many forms. And I and I want people to make sure that when they talk about advocacy, they're not just thinking, oh, I have to go to Capitol Hill and do this thing. I think some of the most effective advocacy is in working with medical trainees, with the students and fellows and the rule makers around what is required in medical training, ensuring that that young doctors as they're rising through the ranks are knowledgeable about rare diseases and excited about doing research and are brought up in a culture of partnership with patient advocates. I think that's something that is often ignored but bears so much fruit. In rare diseases, you know, what I what I wish to be able to collect data and to collect samples and to and to use them to further. One of the things that I I've I've noted, um I was on some uh you know panels at some medical conferences and they would talk about processes that didn't include, you know, that included so many missed opportunities to um to learn um that in the course of normal care, there are so many opportunities to simultaneously do do research um or to use things uh in with patients' consent um for research purposes. Um I think hopefully that may happen a little bit more with AI. But because rare diseases um outside of certain centers are so disaggregated, we can't lose any op- we shouldn't use, lose any opportunity to um collect samples or to ask a question so that every every center, every clinical encounter is an opportunity to learn more and to do more about rare disease care and research.

LaVarne Burton: Thank you so much, Donna. This has just been an absolutely wonderful conversation. I leave it with a couple of thoughts. You said an awful lot of things, but I leave it with a couple of thoughts. One is we really have to take advantage of those unique opportunities to advocate, whether it's with policymakers, but also with the medical community, especially those who are just entering. And we have to use every opportunity that we can to think about, to work about, and to look for how do we uh really emphasize the importance of rare diseases. So thank you so much for sharing those thoughts with us and sharing this morning discussion with us. We really appreciate it. And thank you so much for all that you have done over the years and continue to do with regard to people that have uh chronic diseases, especially rare diseases.

Donna Cryer: So thank you. Thank you so much for including me in these conversations.

LaVarne Burton: Delighted to have you.

Tamara Ruggiero: To find out more about the topics we discussed in this episode, or to access resources to learn more about kidney disease, go to the episode show notes on your podcast listening platform or go to kidneyfun.org slash podcast. And if you haven't already, be sure to subscribe or follow the kidney collective wherever you listen to podcasts, and leave us a like or review to help us reach more members of the kidney community.

Mike Spigler: You can also follow AKF on all major social media platforms, including Facebook, Instagram, TikTok, BlueSky, LinkedIn, YouTube, Twitter/X, or whatever comes next. Join us next time. Remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.