Episode 9: The Critical Importance of Kidney Transplants with Dr. Ben Hippen, partner at Metrolina Nephrology Associates
Dr. Ben Hippen, advisor to the Fresenius Medical Care Foundation and partner at Metrolina Nephrology Associates, discusses the importance of improving the organ transplant process for patients facing kidney failure and the health care industry in general.
Brad Puffer: Welcome everyone to this episode of Field Notes. I'm Brad Puffer on the medical office communications team at Fresenius Medical Care in North America, and your host for this discussion today. Here we interview the experts, researchers, physicians, and caregivers who bring experience, compassion, and insight into the work we do every day. It's well known that the best course of treatment for a person with kidney failure is to receive a transplant.
Yet, the waiting list is long with more than 90,000 people waiting for a new kidney. That means patients with kidney failure could be waiting several years. So how can new initiatives where the government, private industry, and mission based organizations improve access for our patients?
The Fresenius Medical Care foundation has recently announced several initiatives to support opportunities to help more patients receive a new kidney. This includes a unique partnership with Donate Life America to help create the first national universal living donor kidney registry and at home testing kit. And the foundation has also made a grant to support efforts by the United Network for Organ Sharing to improve transportation and logistics for organ donation.
Here now to discuss the importance of transplant for our patients and efforts to improve access is Dr. Ben Hippen, an advisor to the Fresenius Medical Care Foundation and the medical office as well as a partner in Metrolina Nephrology Associates, clinical professor at UNC Chapel Hill School of Medicine, and a medical director for Fresenius Kidney Care. Dr. Hippen, thank you for being here. And welcome to Field Notes.
Dr. Ben Hippen: Thank you, Brad. I'm glad to be here.
Brad Puffer: Well, I'd like to start with why transplant really is the best option for patients facing kidney failure. Many listening might know the answer. But I'd like to hear it from you.
Dr. Ben Hippen: The reason transplantation is generally considered the treatment of choice for most patients with advanced chronic kidney disease or end stage kidney disease is because kidney transplantation generally confers a better quality of life. Unfortunately, as you mentioned, there is a fairly long waiting list for kidneys from deceased donors, which is one of the reasons why a living donor kidney transplantation is often a preferred choice for patients who need a kidney transplant. Living other kidney transplantation also typically has fewer side effects. It requires less long-term immunosuppression and confers a longer graft life.
Brad Puffer: Despite this long wait for a kidney transplant, there have been some improvements across the system. I think I read last year that we had the most transplants ever done in a single year.
Dr. Ben Hippen: That's right. Up until about a year or two ago, the rate of procurement of kidneys from deceased donors and the rate of living donor kidney transplantation was fairly flat. In the last year or two, there definitely have been some measurable improvements. But there's still room to improve.
Brad Puffer: Can you walk us through the differences between living donation versus receiving a deceased donor kidney?
Dr. Ben Hippen: For the recipient, a kidney from a deceased donor typically transpires after several years of waiting on a waiting list. So, for patients of blood type A or blood type AB, there is typically a shorter waiting time until that recipient is offered a kidney, in part because there are more kidneys from blood type A or AB and the deceased pool . Patients who have blood type O or B typically experience longer waiting times in most places around the country.
Because the median survival for a patient with end stage kidney disease on dialysis is about a 40% survival at five years, those years count a lot for the patients who are waiting. Unfortunately, some patients just can't wait four, five, or even more years than that to receive an organ from a deceased donor. For living donor kidney transplantation, the challenge and the key is identifying a potential living donor candidate, who is, of course, willing to donate a kidney and is also able to donate a kidney from the standpoint of the safety of the living donor. It's preferable on a lot of fronts for the recipient in particular, because the salient benefit is avoiding many, many years on the waiting list.
Brad Puffer: Dr. Hippen, you have a really interesting perspective on these issues as both a transplant and general nephrologist. Can you tell us a little bit about your background and how you became so passionate about these issues?
Dr. Ben Hippen: Sure. So, as a transplant nephrologist, my practice is unusual in that ever since I started in practice, I have practiced both transplant nephrology and general nephrology. Which is to say, in addition to taking care of patients with kidney transplants and evaluating living donor candidates, I also manage a population of patients with advanced chronic kidney disease. I am also the medical director of an in-center and home therapies dialysis facility in Charlotte.
In both of those roles, I came to realize that both the transplant centers, the general nephrology practices, and the dialysis providers often didn't understand a number of aspects of how each operate and how each think. As payers have become more interested in value based care initiatives, concomitant with interest in incentivizing ways in which stakeholders can reduce barriers to communication and increase opportunities for collaboration, it struck me that this was a unique opportunity to try and identify and dismantle some of the barriers that exist between general nephrology practices, transplant centers, and dialysis providers in a way in which that would both foster collaboration and communication between the stakeholders, increase referrals to transplant centers for consideration for wait listing, and ultimately, increased access to transplants as a whole, which is what we're all really trying to accomplish.
Brad Puffer: Exactly, and when you talk about those barriers, what specifically do you mean? What barriers are you trying to break down to help our patients?
Dr. Ben Hippen: Kidney transplant programs each have their own different selection criteria for who they believe is appropriate for wait listing. They also have different criteria for how they deal with organ offers and which ones they accept and which ones they reject. The process of evaluating patients and ultimately listing them typically takes a lot of times, often several months.
Furthermore, there's no reliable, reproducible platform of communication between nephrologist dialysis providers and general nephrologists. So, it is very difficult to figure out in real time for any given patient where they stand in the process after the initial point of referral. Because of these barriers, it's very difficult for general nephrologists quite frequently to accurately gauge which of their patients is or is not an appropriate candidate for referral. Or, if they are an appropriate candidate for referral, when the appropriate time to refer that patient might be.
A few years ago in the American Journal of Transplantation, Dr. Maddux and I co-authored an article identifying some of these barriers, offering a path forward as to how we could surmount them in a way that would increase mutual understanding of the clinical stakeholders of each other's challenges, identifying opportunities for collaboration, and ultimately coming up with a system that is transparent for everyone, including patients, ideally increasing access to transplantation for patients who might otherwise either wait a very long time to get access to transplant or may never have access to transplant at all.
Brad Puffer: I referenced some of the things in my intro about what the Fresenius Medical Care Foundation has done in its mission to address some of these transplant challenges. As I know, you've worked closely with the foundation. Can you give us a little more insight into that work, especially the partnership with Donate Life America? What are some of the barriers to living donation that the registry will help address?
Dr. Ben Hippen: Donate Life America is a longstanding nonprofit organization that has been long involved in educating the public about the importance of organ donation. Their primary focus over the years has been encouraging people to register to be deceased donors. Of late, Donate Life America has gotten more involved in encouraging people to explore the option of becoming a living kidney donor.
A key component of their new initiative is creating a living kidney donor registry. Part of this initiative is developing a novel saliva-based test platform, which will be able to identify a potential living donor candidate's blood type as well as their HLA phenotype. The latter is important in making sure that the donor candidate is immunologically compatible with a potential recipient.
Brad Puffer: Well, that's really exciting, Dr. Hippen. And we'll look forward to hearing more news about that in the next few months. What about the latest grant that the foundation made to the United Network of Organ Sharing? What is that addressing? And how do you think it could impact the availability of organs for the transplant network?
Dr. Ben Hippen: The Foundation funded three different projects that are being conducted under the auspices of UNOS Labs, which is an adjunct to the United Network for Organ Sharing, that's really designed to road test a number of different products and initiatives to try and improve the entire process of organ procurement to organ delivery to organ transplantation. One project that UNOS Labs is working on is an algorithm to try and predict organ travel time.
When you and I have to travel from A to B, we might make use of an online platform to try and figure out how we can get there in the quickest and most efficient way. UNOS Labs is pursuing an algorithm that will allow the same thing for procured organs, to make sure that an organ procured in city A can make it to city B through the straightest line possible, in the shortest amount of time.
The other project they are working on is a broader analytical project to try and understand a concept called “cold ischemia time. When an organ is removed from a deceased donor and placed on ice, there is a limited amount of time between when that organ is removed and placed on ice and when it is transplanted into a potential recipient. This is true, not just of kidneys, but hearts, livers, and lungs. The amount of so-called cold ischemia time is important to figure out and measure accurately.
One of the reasons that organs are sometimes discarded is because they end up having too much cold ischemia time for any number of reasons, many of which have to do with difficulties in coordinating travel logistics. Getting a better and more precise understanding of what cold ischemia time really is and how to measure it, is important to increasing utilization of organs, not just kidneys, but all organs.
Finally, UNOS Labs is working on a project whereby organs that are procured and transported from A to B can be tracked in real time, using an electronic platform like, for example, an RFID chip. The idea here is to avoid the occasional instance in which organs are procured and then in the course of being transported from point A to point B are lost in transit for one reason or another. By tracking organs electronically, ideally, this will substantially reduce, if not eliminate the loss of organs due to interruptions in transit.
Brad Puffer: It certainly seems like a lot is underway to improve the systems, both to make organs more available and also to help support living donation. Going back to Living Donation, when we think about that, I know the foundation is also supporting the Big Ask Big Give Program. How important is that, essentially, to make more living donors available? It sounds like you really have to be willing to stick your neck out and ask for help.
Dr. Ben Hippen: Use your mind's eye and imagine being in a circumstance where you are dependent on dialysis and are seeking out a living donor. Making “the ask” is about as difficult a thing as you can imagine to ask of someone else. There are a number of different approaches the transplant centers have identified as being successful in soliciting a potential living organ donor.
One is training not just the candidate on how they can ask, but also incorporating the candidate’s family and social circle into that conversation. Sometimes the best way to make it known that someone needs living donor kidney transplantation is to have someone other than the candidate make the ask. The premise behind Big Ask Big Give is to bring not just candidates, but candidates and their families into a social setting in which both the benefits of living kidney donation can be explained, the risks of living kidney donation can be explained, with plenty of opportunities for questions and discussion to normalize what's otherwise for people who are not directly involved in transplantation-- a very intimidating and sometimes scary thing.
Brad Puffer: When we step back and we think about other ways that we can improve access to kidney transplants, I know the American Kidney Health Initiative has made this a priority. And the federal government is implementing some new rules to help encourage more transplants. How is that proceeding? And what do you think the impact will be?
Dr. Ben Hippen: The Advancing American Kidney Health Initiative has promulgated a number of different value-based contracting opportunities that build on the existing track record of value based care arrangements that primarily focused on relationships between dialysis providers and general nephrologists. The AAKHI value based care initiatives, also include transplant providers, and specifically provide incentives to increase the total number of kidney transplants.
These initiatives will encourage collaboration between general nephrologists and kidney transplant programs in ways that were not well designed or well incented in the past. I'm hopeful that this will not only increase the quality of communication between these stakeholders, but also increase the total number of kidney transplants performed. I think that in combination with a change in the regulatory milieu transplant centers are operating in, which will give them more encouragement to use kidneys from higher risk deceased donors, together with efforts to increase education about, and ideally participation in, living kidney donation, we will increase the total number available kidney transplants to our patients.
Brad Puffer: Well, I wanted to end with asking if you had any advice for other physicians or care teams about helping their patients get to that kidney transplant, the ultimate goal. From your experience, are there a few things that physicians and care teams should really be focused on to make sure our patients have the chance?
Dr. Ben Hippen: Probably the most important thing that care teams can do is early education. Patients who received kidney transplants benefit the most if they're able to be transplanted before they require dialysis. So early education and early referral in the advanced CKD stage of care is paramount. The second thing, I think, is encouragement.
The kidney transplant process from the initial education component to referral to wait listing is a very long, long wait for many of our patients. And it is easy to get discouraged. It's also easy for patients to feel as though if they have a setback in the course of the kidney transplant evaluation that they have somehow failed or it's somehow their fault. It's not.
This is, unfortunately, a process that for many patients takes years and years. And in the course of those years, they may have setbacks to their health, to their social situation, to their financial situation. And it is important, I think, for their success, for their care team to recognize how challenging this is for them and to be someone who listens and someone who where they can advocate for their patients so that they don't get lost in the process.
Finally, making a concerted effort to reach beyond your usual care team a number to understand, for example, how a transplant center that you referred to operates, how the coordinators do transplant education, how they communicate with our patients, and the process whereby wait listing decisions are made or wait-list removal decisions are made will help in streamlining communication, making sure that the patient has the best information, and giving a much higher likelihood of successfully getting the patient from wait listing to transplant.
Brad Puffer: Well, Dr. Hippen, I think that's a great way to end this really important discussion for our patients. I certainly learned a lot. And I hope our audience did as well. Thank you so much for taking the time.
Dr. Ben Hippen: Thank you, Brad. It's my pleasure.
Brad Puffer: And to our audience, thank you for joining us. We hope, as always, that you've learned something valuable here today as we continue our efforts to help those in our community who are battling kidney disease. Don't forget, you can find Field Notes in the Apple Store or Google Play or right here at FMCNA.com where you can also find our annual medical report and other feature articles.
We hope you'll come back and join us as we discuss more important issues in the weeks ahead. Until next time, I'm Brad Puffer. And you've been listening to Field Notes by Fresenius Medical Care. Take care, everyone.