Podcast – The Intersection of Race and Kidney Disease

This episode of Kidney Health Connections sheds light on systemic disparities in kidney care and the critical shift toward a race-neutral estimated glomerular filtration rate (eGFR) equation. Dr. Amaka Eneanya, adjunct professor of medicine at Emory University School of Medicine, discusses the historical use of race in the original eGFR equation, which disproportionately affected Black patients by assigning them higher kidney function levels based solely on race. This flawed approach led to delays in diagnoses, restricted access to nephrology care, and postponed eligibility for kidney transplants.

Dr. Eneanya helped lead the charge for adoption of a race neutral eGFR equation. In this discussion, she highlights the positive impact of this change on early intervention and access to treatment for Black Americans. She also shares actionable steps for labs, health plans, and providers to continue to drive adoption of race neutral kidney disease testing and treatment.

Transcript

Introduction: Advancing race-neutral kidney care and eGFR reform

Dr. George Hart: Hello, everyone, and thanks for joining us today on this episode of Kidney Health Connections. During my 30 years as a practicing nephrologist, I saw firsthand the disproportionate impact that kidney disease had on our society's most vulnerable people. Specifically, if you're socially or economically disadvantaged, your access to care could be limited. And at times, even our most basic testing for kidney function, estimated glomerular filtration rate, or eGFR, was skewed in a way which could specifically and negatively impact a Black patient's access to care, especially the best care, a kidney transplant.

Today, the healthcare community has widely adopted a race-neutral eGFR calculation. To help us understand this movement to change the eGFR and how that decision has impacted patients, we're joined today by Dr. Amaka Eneanya, a leading scholar on the use of race in kidney care, a physician executive, and a professor of medicine at Emory University School of Medicine.

Dr. Eneanya, it is so great to have you today and I look forward to this conversation.

Dr. Amaka Eneanya: Thank you so much. Dr. Hart, it's great to see you again and I'm excited for our conversation today.

Dr. George Hart: So you have dedicated your career to advancing change in healthcare. Tell us a little bit about your background and your research.

Dr. Amaka Eneanya: Sure. So my research historically has focused on shared decision making, right, making sure that patients are informed and engaged about their healthcare treatment options. And specifically, I looked at patients with advanced chronic kidney disease who are really at the cusp of, you know, perhaps considering transplantation, or dialysis, or no dialysis and conservative kidney management and really kind of getting to the underpinnings of how they made their decisions, who they engaged in their decisions, and if there were racial differences in terms of what Black patients’ type of care that they received or decided on, versus patients from other racial groups.

And that extended into palliative care research, so looking at quality of life, across the spectrum of chronic kidney disease, as well as end of life decisions—so really seriously ill patients with all stages of kidney disease and the type of quality of life that they preferred, and their caregivers preferred, at the end of life.

That research obviously morphed into the conversation we'll have today about eGFR, and racial differences, and really thinking about the biology of kidney disease, and why race may have been introduced into those concepts.

 

What is eGFR and why does it matter?

Dr. George Hart: Talk us through this intersection of race and kidney disease and, specifically, how in the world did we get to the point where we were incorporating race into this calculation? Also take a second, too, and define eGFR for our audience so we don't get too much in the weeds in doctor talk here but help it be understandable for everybody.

Dr. Amaka Eneanya: Sure. So eGFR stands for estimated glomerular filtration rate. Now, I know that sounds pretty clunky, but it's really a statistical equation that was developed first in 1999 as a way to predict someone's kidney disease.

So, as nephrologists, the gold standard of actually measuring someone's kidney function is glomerul filtration rate. Now, to do that is quite difficult. You need a series of blood collections, sometimes urine collections, over a series of time. That could take a while.

And so although it is our gold standard for seeing how well someone's kidneys are actually functioning, the statistical equation that was developed, the eGFR estimated equation, is a much quicker way to determine someone's kidney function at the bedside, to really help with dosing of medications, or really thinking about a patient's clinical path and what kind of treatment is best for them. And so that’s what eGFR is.

 

How was race used in eGFR calculations?

Now, to your question about how race got introduced into the equation. So that's very interesting, and I think, even more salient as we look at artificial intelligence and other statistical equations that predict a variety of outcomes. And so when this equation was developed, what the investigators did— and they were very skilled investigators that were working out of Tufts Medical Center—were actually to throw a bunch of clinical variables into an equation, and then to see which variables together best predicted someone's GFR.

And at the end of the day, the variables that predicted the equation best were age, sex, race, and serum creatinine. So those four variables, when you put them together, had the best statistical accuracy in predicting someone's kidney function.

And so at the end of the day, they ended up with two statistical equations, one for Black individuals, and one for everybody else, because of those differences that they saw in the study. And so Black individuals actually were assigned a higher eGFR, or better kidney function, compared to non-Black individuals, based on how that equation was developed. And so that is how we got into race getting into the equation.

However, the interesting thing is that we know that race is a social construct. And so if we're predicting biological outcomes, we should not have race as part of that equation. And that was the major fallacy with this study and with this concept of estimated eGFR—estimated glomerular filtration—being different among Black individuals, was that it was a flawed assumption that all Black people, regardless of, you know, what they eat, what they drink, what medications that they take, or even how they're built physically, would have different kidney function just based on that.

 

How race-based equations delayed kidney care for Black patients

Dr. George Hart: I remember all of this as you're talking about it and was certainly practicing as this debate started and morphed over time. So how does this specifically impact an individual Black patient as it relates to missing a diagnosis, or a late diagnosis? To me, it kind of reflects back on what you were saying earlier, which is, you know, looking at the empowerment of patients to make their own decisions and participate in their own care. Am I thinking about it correctly?

Dr. Amaka Eneanya: Absolutely. So this impacted Black individuals in particular because, as I said, their eGFR was—given the eGFR equation that was used, there were a few at the time—it ranged from 16 to 21 percent higher if you were Black, right. And so you can imagine if someone's being told that they're healthier than they really are—and we have national guidelines, international guidelines, that have suggestions as to when someone should see a nephrologist based on eGFR, or when someone should be referred to kidney transplant, or can get listed for kidney transplant.

All of these things determined, or at least affected, why someone who is being assigned better kidney function would have to wait longer for standard care that, you know, our societies, whether national or international, were recommending. And so that just delayed care for an entire population, of the Black population, who were at risk or had kidney disease because they were told for two decades that they were healthier based on their race.

 

What led to a race-neutral eGFR equation?

Dr. George Hart: What actually had to occur to remove race from the GFR equation?

Dr. Amaka Eneanya: Great question. So there was a group of students in Boston at Harvard Medical School that really challenged this equation. And Beth Israel Deaconess, one of Harvard Medical School's major teaching hospitals, ended up just throwing out the Black eGFR equation and using one equation for everybody else. And that actually started what I call a scientific advocacy movement. And trainees, medical students decided to challenge a lot of their healthcare institutions and medical schools to do the same thing.

So that took off, and maybe about 10 or so institutions made the change that Beth Israel Deaconess did by just using the non-Black eGFR equation for everyone. And at that point, the American Society of Nephrology and National Kidney Foundation formed the joint race and eGFR task force, of which I was blessed and lucky to be a part of.

That committee did a number of deliberations over a year period reassessing all of the literature that used eGFR equations, not only nationally but internationally. How accurate was it? We had a number of discussions. We had patients on this task force. And at the end of the day, we decided to recommend a new equation that was published in the New England Journal of Medicine, the race-neutral equation, in 2021.

I was also honored to be a second author on that New England Journal of Medicine paper, working with the original eGFR authors who had developed the 1999 equation. And so, that equation was published and then quickly after that, or maybe even at the same time, the American Society of Nephrology and National Kidney Foundation made their recommendation. That was how the change was made.

 

Dr. Amaka Eneanya’s role in changing kidney care

Dr. George Hart: How did you become a part of this change in this movement? Because you played a large role, and certainly have shifted, you know, how renal care is being delivered in the United States and how kidney function is being measured. How did you get involved?

Dr. Amaka Eneanya: Yeah, that's a great question that I get asked all the time because my research was so patient-centered, you know, was focused on patient-centered outcomes and not equations, which is a very different skillset.

I think where it came for me is—and I hope everyone gets this opportunity in life—is that, you know, there was something that was presented to me, a question, a challenge, that I felt specifically my background matched. So as a Black nephrologist who was trained officially and formally in statistical methods and clinical research at the Harvard School of Public Health, I was already well versed in race. I studied Black sociology at Cornell University. I did my honors thesis on race—racial segregation on campus. I had a very nuanced way of looking at race that I think most individuals had not previously received in their life.

I also come from a family that has kidney disease. I had a family member who was directly impacted by the race-based equation and had their care delayed.

And so it was a combination of all of those things that just made it seem like, if there's someone that's going to take this on, who has the expertise and the knowledge, I think it should be me. And so that, that is how I took it on. I just happened to, I had focused on health literacy and patient education as part of my shared decision-making research, so I know how to make things very simple and make this very complicated topic easy to understand and to digest.

And then I'm also really passionate. So when you put all those things in the pot, that's really how this came to be. Something that I wanted to drive all the way to the end until we could make sure that this was a practice and a concept of the past.

 

How a race-neutral eGFR benefits Black patients

Dr. George Hart: Well, I certainly appreciate the passion, and this being in the right place at the right time, and this perfect cocktail that you've brought into the conversation.

So, obviously I'm in a value-based care world. And I care a lot, and my company, Interwell, cares a lot about early intervention, early access, early education. And we see those as fundamental to how we positively impact chronic kidney disease in a pre-dialysis world and provide more holistic care.

How do you think these changes in eGFR are going to help care teams and nephrologists improve the lives for Black Americans? And specifically, how are we going to translate that into a better patient journey, and hopefully even better quality and lower healthcare costs?

Dr. Amaka Eneanya: Well, I think it's going to be a very impactful change for value-based care. We have now a race-neutral equation. So many more patients, again, Black American patients or Black patients, their eGFR will shift downwards, the severity of their disease will be more. And so they will be able to have awareness that they now fit the recommendation to see a nephrologist earlier. They will then be able to be evaluated and listed for a kidney transplant. They also, you know, will now qualify for certain medications that could benefit their kidney disease trajectory. And so this is a huge change for value-based care, and making sure that patients have earlier access to the care that they rightly deserve.

So essentially, Black individuals will now have, perhaps they'll be able to engage with their clinicians and their caregivers to say, “Hey, listen, my kidney disease is more severe than I thought. What can I do about this? What are the conditions that are contributing to my chronic kidney disease? Whether it's diabetes, or high blood pressure, or some other factor. Can I control it? Are there some different lifestyle changes that I can do or different medications that I can take? What can I do to actually have more engagement and be empowered to take over my health?” I think that is a major win for having this equation now be race-neutral.

A unique impact of this whole discussion was that it got a lot of attention. The Doctors TV show picked this up. I worked with Shonda Rhimes on a Grey's Anatomy episode. So people were actually watching this at night after dinner and being like, “Is this me?” And going to check their labs and saying, “Oh my gosh, I should have a conversation about my clinicians.” And so the awareness was huge on this topic, and I think it will continue to really be awesome for Black individuals to have better engagement, better discussions, further discussions with their caregivers and their clinicians.

 

How can primary care support race-neutral kidney testing?

Dr. George Hart: It strikes me that the torch has to be carried to primary care.

Dr. Amaka Eneanya: Yes.

Dr. George Hart: Are you finding success and traction in the primary care community to change how they interpret these labs and begin those conversations and referrals?

Dr. Amaka Eneanya: I would think, just like in all aspects of medical innovation, it's taking time. I see some variability in the primary care community. I do think the nephrology community, especially because it was coming down to one of our main tools, are much better versed in this topic. But I do see some variability when it comes to primary care.

I think the general concept of why it was changed, what the impact was, is there now. But when it comes to actually knowing what their lab uses, that knowledge is not there. And that’s not surprising. You'd have to actually—if it's not on the frontpage of your labs, when you're looking at it as a clinician—you'd have to call your lab and say, “Are we using like CKD-EPI, MDRD?”

And so, there's reasons why that awareness continues to be ongoing, continues to be a challenge, because of those nuances. So, I think that it will eventually become standard of practice. But if we think about that this was ingrained in everything we did for two decades, it's going to take time to change that.

 

Challenges in race-neutral kidney testing adoption

Dr. George Hart: It strikes me that change is coming, but like you said, it's slow. Even in the population of people that we are taking care of now in the CKD world, we frequently see as many as 40 to 50 percent of patients with late-stage CKD who've never seen a nephrologist, didn't even know they had kidney failure. So, I do think that the work that you and others have started, we need to help further that forward in ways and, you know, maybe we can come up with ideas and another conversation on how to do that.

And it brings me to this next point, which is even though the major labs have shifted, you know, their interpretation and application of a race-neutral GFR, there are many smaller labs that aren't doing this yet. Change is slow, like you've said, you know, but how can we change this mindset? What suggestions do you have for us to impact labs, providers, and health plans to better embrace a race-neutral GFR and all the downstream implications that come with that?

Dr. Amaka Eneanya: It's going to take a cross-functional approach for this, right? I think hospitals have to be engaged with their labs. I think the health plans, when they're thinking about the contractual arrangement that they have with labs, it needs to be explicit that the recommended clinical practice guidelines have been implemented in all care practices. So for labs, that would require that the 2021 CKD-EPI equation is being used. If there's a, let's say a multi-year contract that a health plan has, this will need to be an explicit amendment, right, going forward that they'll need to use this new updated equation.

I think the good thing is that at least on the transplant side, for UNOS in particular, they came up with several federal policies to prohibit the use of race-based equations. They also came up with the second federal policy, actually modified wait list times for Black individuals who were waiting for a kidney transplant. And once the new eGFR equation was implemented and their eGFR and their kidney function shifted downwards, they received waitlist time back. So as of earlier this year, 20,000 Black patients had their waitlist times modified, and approximately 6,100 of those Black patients who had their time modified received a transplant.

So federal policies are huge. We will need more of that when we're thinking about, again, our health plans and our labs. But in the meantime, I think we can have these contractual arrangements. I think every hospital staff should be reviewing their clinical practice guidelines across the board, not just for nephrology, but for this topic.

Yes. I'm not surprised that it's taking so long. As we talked about change is slow, but even before the 2021 equation, we had our 2012 CKD practice guidelines from KDIGO, our international guideline decision-making body, and even at the time that they recommended the 2009 equation, the vast majority of labs were using the outdated MDRD equation.

So this is nothing new. We've seen this before, and actually it's quite rapid that over 75 percent of labs have made this change. But to your point, there's still thousands of smaller labs who may not be aware, or again, are just not following this literature. So I think it has to be a cross-functional approach where there's lab leaders who are really reviewing their guidelines, their equations, and then the health plans are reviewing their contractual arrangements and making sure that this is explicit in the contract.

 

Empowering patients through awareness and advocacy

Dr. George Hart: I totally agree with you. It seems to me, as I reflect on my career, that this is really, you know, a time for nephrology and chronic kidney disease where we have a light being shined on us in a way that's never been, maybe dating back all the way to the 1960s when, you know, we had all that legislation and that was changing in ‘73. But today seems to be our opportunity to gain awareness and to get the message out there. Are you seeing that same sort of visibility and spotlight?

Dr. Amaka Eneanya: Absolutely. I think especially societies like the American Society of Nephrology and the National Kidney Foundation in particular have a big focus on advocacy. The National Kidney Foundation has publicly available toolkits for clinicians even to have the discussions with patients, and what this actually means for an individual who is, again, at risk or with kidney disease, what does this mean for them?

And everyone's story is going to be different, everyone's trajectory is going to be different. And so the engagement has been great. And as a, you know, a fellow nephrology nerd, it's so good to have like such vast discussions about kidney disease when previously people were like, “What do the kidneys do?”

Dr. George Hart: Did you just call me a nerd?

Dr. Amaka Eneanya: Yes!

Dr. George Hart: Yes! I'll take it. I'll take it.

 

Addressing social determinants of health in kidney care

Dr. George Hart: You've educated me, you've educated our audience. But it's not just about eGFR. We have other big challenges out there. You know, what are some of the things that we need to address, or think about, or overcome in order to better support Black Americans living with kidney disease?

Dr. Amaka Eneanya: Absolutely. I think that's a great question. And you're right on the money with that, George. This is a slice of furthering kind of care, and holistic care for patients, and making sure that everyone, regardless of their background, has the right to achieve their highest potential in health. Right. And so, this is a slice of it.

We know for a fact that what drives social differences, racial differences, in care, 80 percent of those factors are outside of healthcare institutions. So the social determinants of health are a large factor.

When we're thinking about, how do we marry this eGFR data, right, with social determinants of health, that is how we're supposed to be really moving forward as a field in terms of linking the outcomes for a Black individual to say that, “It's not your biology, by the way. It's what you're eating. It's the neighborhood that you live in. It's whether you have insurance. It's, you know, how are you navigating this? Are you able to navigate it? Do you need help?”

These are the discussions that we need to be having in addition to eGFR. And I think it's good that we call it out that this will not save us. This will not automatically fix a lot of the poor outcomes that we see, in particular, among Black individuals with kidney disease.

But we want to be clear that it's not their fault. Right? People are not born with having worse outcomes. That it's actually something that they could really empower themselves, and to be more engaged into their health, and know that there is help out there, and that we as clinicians are, you know, side by side with patients, trying to make sure that they achieve their highest potential.

 

Closing thoughts: The role of value-based care in improving outcomes for kidney disease

Dr. George Hart: You're singing to the choir here, and I certainly agree with all of what you just said and it fits nicely, I think, with this concept of value-based care where we apply wraparound services to support patients not just for their medical needs, but for those other needs that impact their medical care. So I think this is a great add on to, you know, what we're already trying to do.

Thank you so much for this conversation today; it's been a blast. It's always good to see you and get a chance to learn more about what you've been doing and the impact you're making

For our listeners, I hope you'll join us for more conversations on the future of kidney care by subscribing to Kidney Health Connections and visiting our website at interwellhealth.com.