Why more innovation is needed to improve patients’ access to kidney transplants
Dr. Jeff Giullian, chief medical officer, DaVita Kidney Care
You might think it’s odd that a dialysis provider would push for broader patient access to kidney transplants, which could replace the need for dialysis. And yet, at DaVita Kidney Care, we are doing just that. Alongside the thousands of care team members I work with, I am a passionate advocate for transplants—in fact, we are incredibly proud to have recently celebrated our 100,000th patient to receive a kidney.
Still, 60 years after America’s first organ transplant, the system remains a work in progress. More innovation is needed to transform the system and improve access for all patients.
I myself am a kidney and transplant physician who spent many years supporting patients through this complex process. Getting a kidney transplant is not easy.
Patient education—both before kidneys fail and after—is the first essential aspect of this process. Understanding the complexities of choosing a living donor kidney transplant or getting on the waitlist for a deceased donor requires a lot of conversation with patients and their families.
Next, the evaluation process is complex. Each transplant center has its own requirements when it comes to the medical tests and evaluations that are needed in order for someone to be eligible for the procedure. If a patient is unable to complete all of these steps or fit certain targets set by the transplant center, such as weight, blood pressure or other health outcomes, they may be denied a spot on the waitlist. Some patients may not qualify due to having had cancer, a heart attack, an active infection or issues with substance abuse.
For patients on dialysis, their dialysis center is required by the Centers for Medicare & Medicaid Services to provide basic education and support. I’m proud that our team has taken this a step further by creating Transplant Smart, a multimedia patient education platform. We also built the only nationwide system for tracking the transplant status—from education to waitlist—for the 200,000 patients we serve.
Unfortunately, all of these efforts are sometimes not enough. While we refer all patients who are interested in a kidney transplant to transplant centers, sadly many do not make it onto the waitlist, and there’s limited support for patients to navigate the even more complex living donor process. Data is still faxed to transplant centers from both dialysis clinics and physicians, as there is no consensus on a minimal data set or electronic transmission format. While we’re proud to be participating in a federal project that solves for standard data transmission and communication between transplant centers, dialysis clinics and nephrologists, we need standards to scale a system like this nationwide.
Other times, needed outcomes are not possible for the patient to achieve on their own. For example, some patients need to lose weight to qualify to be listed. As we all know, the ability to do that requires significant commitment and often support from health care providers.
I’m encouraged that there is growing focus on policy aimed at increasing patient access to transplants. Positive signs of forward movement in this effort include last year’s Executive Order on kidney health, and the legislation recently passed by the House of Representatives protecting access to post-transplant immunosuppression treatment.
But we also need to work on modernizing and standardizing waitlisting, including the waitlist maintenance process. It’s a shame that in this modern electronic age, there are still patients who think they are waitlisted when they are not.
We’ve also seen that initial waitlisting and maintenance may have racial biases that need to be overcome1 . We’ve seen that while the initial referral process doesn’t have racial biases, the ability to get on the waitlist does. And the literature has shown2 that there are racial issues with regards to maintaining transplant waitlisting status.
This is a call to action for our entire community – kidney care providers, doctors, patient advocates and transplant centers – to find swift, creative ways of expanding access to transplant.
And while we can and should focus on improving the process, the reality is that we are facing an enormous supply issue. Today, there are nearly 92,000 Americans on the waitlist for a kidney. There simply aren’t enough organs to meet the need. I’m encouraged that living donor transplant numbers are the highest they’ve ever been and we continue to see organ procurement organizations working with transplant centers to expand availability of organs by revisiting acceptance guidelines.
As I reflect on how large this task is, I’m reminded to remain focused on what matters most: making a positive difference in the lives of each person who entrusts us with their care.
So, let’s keep chipping away at this. Let’s keep innovating. Let’s learn from other industries to modernize our efforts.
While we are only one part of this complex system, we are committed to coming together and being part of the solution.
1. Brunelli SM, Hunt A, Colson C, Tentori F. Exploration of racial disparities in the kidney transplant process among dialysis patients. Abstract presentation at the American Society of Nephrology Kidney Week, November 2020, Virtual.
2. Kulkarni S, Ladin K, Haakinson D, Green E, Li L, Deng Y. Association of Racial Disparities With Access to Kidney Transplant After the Implementation of the New Kidney Allocation System. JAMA Surg. 2019; 154(7):618-625. Doi:10.1001/jamasurg.2019.0512