On October 22, 2019, Donate Life America (DLA) and the Fresenius Medical Care Foundation (Foundation) announced a unique partnership, launching a groundbreaking national, universal living donor kidney registry and at home living testing kit. These solutions are designed to improve access to kidney transplantation for the nearly 100,000 people on the waiting list and currently living with chronic kidney disease (CKD).
Donate Life America (DLA) Board Member Dr. Matthew Cooper and Fresenius Medical Care Foundation advisor Dr. Ben Hippen discuss the future of kidney transplant in the wake of a groundbreaking partnership. Dr. Hippen is also a partner at Metrolina Nephrology Associates, a Clinical Professor at UNC-Chapel Hill School of Medicine, and Medical Director at Fresenius Kidney Care.
Q: How can partnerships like this one help move the needle forward in disease treatment?
MC: Simply put, we need each other. To go beyond the status quo, we need the best and brightest minds from across the industry to inform the conversation and develop the very ideas that will help us grow beyond what one organization might accomplish on its own. A partnership like this one allows for that level of understanding and shared purpose.
Q: Why does Fresenius Medical Care North America support the Foundation’s goal to make transplant more available?
BH: Increasing access to transplantation is simply the right thing to do for CKD patients. There is no serious disagreement that for most categories of patients with advanced CKD or end stage renal disease (ESRD), a transplant confers the longest quantity and best quality of life. We want to help maximize access to transplantation in a manner that is efficient and equitable, while also working together to eliminate barriers to increasing the supply of organs for transplantation.
Private and public payors recognize the value of increasing the volume of transplants performed, and payors are designing new payment models accordingly.
Q: What about this partnership most excites you?
BH: I’m both a transplant and a general nephrologist. My professional passion and single-minded focus in the last five years has been to identify ways in which clinical stakeholders in nephrology, dialysis, and transplantation can dismantle legacy cultural barriers between themselves, developing pathways for communication and collaboration which will provide the best care for all patients in every stage of kidney disease. This novel collaboration between DLA and the Foundation is one more step on that path. I’m excited that DLA has made the decision to expand its important work around awareness for being an organ donor after death and applying it to the effort to expand living donation.
Q: What are some of the barriers to living donation that this initiative will help address?
MC: I believe that every person is good at heart and wants to do a good deed when given the opportunity. However, there are a great number of barriers for individuals to express interest in becoming a living donor. These barriers include finding transplant program contact information on their own and navigating an often complex healthcare system. The National Donate Life Living Donor Registry will allow those interested in donation to learn more about living donation, to express interest in becoming a living donor, and will invite them to take the initial steps in the living donor screening process. Once a living donor prospect enters the pathway, we will be gathering basic information, including their blood type and a saliva sample to determine a human leukocyte antigen (HLA) match before connecting them with transplant organizations. This physical demonstration of commitment from the potential donors will help us ensure we are connecting transplant organizations with people who are really thinking about and understanding the next steps in this process.
Q: What made DLA eager to participate in this partnership, and what are the key strengths DLA brings to the partnership?
MC: We are a leader in developing a deceased donor registry, the National Donate Life Registry (RegisterMe.org), and have relationships with transplant programs across the country.
DLA has typically focused on deceased organ donation. As healthcare and emergency medicine in the U.S. has continuously improved over recent decades, we have seen fewer deaths and potential opportunities for deceased organ donation. Data also shows that a kidney from a living donor will outlast a kidney from a deceased donor.
The aspect of this partnership that most excites me is the opportunity for paired transplant exchange and a national universal living donor registry. With paired exchange, one donor can result in many transplants. Even if a person is not a match for their loved one, they can still donate to another person with an incompatible donor, allowing for their loved one to then be paired with a donor, and creating a domino effect.
If everybody does a part in their own little world and that gets shared nationally, I think we’re stronger for it and bring more opportunity to think about ending the waitlist.
Q: How do you envision this partnership increasing access to kidney transplants from living donors?
BH: Novel endeavors like this project, when they are designed deliberately and informed by the input of multiple stakeholders, will provoke even critics of the project to think a little differently. It may inspire other stakeholders to re-focus attention on how we as a community think about living organ donation.
Q: Is there anything else you’d like to share about this initiative?
MC: These groups, DLA and the Foundation, are doing this because they recognize it’s the right thing to do. That warms my heart. We have an opportunity to bring CKD into the public eye and make an impact. We know transplant is the best option, and we’re stepping up and taking leadership. We’re going to partner together and work to find an answer. Being part of the solution. That’s what it’s all about.