This transcript has been edited for clarity.
Matthew Sparks, MD: Welcome to Medscape's InDiscussion series on chronic kidney disease. I'm Dr Matthew Sparks and this is episode 4. Today we'll be discussing disparities in care. First, let me introduce my guest, Dr Dinushika Mohottige. Dr Mohottige is an assistant professor of medicine at Duke University. She is engaged in patient- and community-centered inequity-focused research around the impact of sociostructural factors on kidney health and kidney transplantation. Welcome to InDiscussion.
Dinushika Mohottige, MD: Thank you. It's wonderful to be here with you.
Sparks: Before we get started, I think it's best to have our listeners get to know you a bit better. Can you tell us about how you got involved in nephrology and maybe something that people wouldn't know about you?
Mohottige: Sure. The truth is that I grew up in nephrology, believe it or not. And it's only recently that I started to tell more of this story in terms of how I ended up here. My mom is a nephrologist. She's a general nephrologist, and I have very vivid memories of growing up in New York City, where she was training at Harlem Hospital at the time. On the days when there wasn't a babysitter for me, I was in the dialysis unit with her. From a very early age, I was exposed to what it meant for people to be on dialysis and experiencing kidney failure. And it took me a while to understand how her caregiving and being a physician connected eventually to my desire to do inequities work. After a long process of undergraduate studies as a public policy major, then thinking about public health as a career and community-engaged work, I eventually made my way back to medicine, in part because I felt like I was inspired by the ability to have an individual impact on patient care, rather than being reliant on broad, sweeping policy decisions and grant funding to do meaningful work. I also remember in medical school, when I was contending with the decision about nephrology vs not, and the same sort of questions came to me through residency. I kept going back to this core issue that had always bothered me: when you walk into a dialysis clinic in the United States, the gross inequities, racial inequities, and socioeconomic inequities and who ends up with kidney failure are striking. They were striking 20 years ago, 25 years ago, in the late '80s, when I remember being with my mom, and they remain striking today. And that thread, to be honest, connected with my love of the longitudinal relationships that I saw other nephrologists have with their patients, getting to know people over time, getting to walk them from chronic kidney disease to (hopefully) transplant, is why my research interests have folded in so much with what I enjoy doing clinically, which is caring for people with kidney disease.
Sparks: That's wonderful. And obviously we have a lot of work to do in nephrology. A lot of our listeners might not be intimately knowledgeable about the disparities. Can you give us a little bit of background on how bad the problem is with some statistics?
Mohottige: Absolutely. I think there are several important things to ground everyone in this conversation. To me, one of the most striking inequalities in health outcomes in the United States is in kidney disease. This is represented by a number of different data points or statistics. One of those is that although Black Americans constitute about 13% of the US population according to census data, they account for about 35%-36% of the US dialysis population. This is extremely concerning. In addition to the fact that consistently over time, Black Americans have a two- to four-fold-higher incidence of being diagnosed with end-stage kidney disease or kidney failure vs White counterparts. That trend, as I mentioned, has been present for over a decade, despite a number of scientists, policymakers, and advocacy organizations trying to address this disparity. In addition to that, there are several root causes of some of those end-stage kidney failure disparities that we know about that start in chronic kidney disease care and that is represented by the fact that Black Americans and minoritized individuals, individuals who are racial and ethnic minorities in the United States, are less likely to have ideal conversations about chronic kidney disease, chronic kidney disease prevention, and kidney treatment modalities that are available. There are disparities in the provision of key treatments that can actually slow the progression of chronic kidney disease. This has been shown even with some of the most recent advances in medications that can really help to slow, again, progression of diabetic kidney disease, etc. One example of this are these new agents called SGLT2 [sodium-glucose cotransporter-2] inhibitors. There are racial and ethnic disparities in who gets those. And so there's this cascading series of disparities that carry along from chronic kidney disease all the way into dialysis care and ultimately into transplant.
Sparks: Let’s go back to that data point: 13% of people in the United States identify as Black. However, over 30% of those on dialysis and who have end-stage kidney disease identify as being Black. That's a huge issue. Also, you mentioned that transplantation rates are lower in a group that has a higher rate of having the disease, and that's an area that you have a special interest in. How are transplant centers and nephrologists grappling with this? Can you give us some insight into your research? Because we need those patients to get kidney transplants.
Mohottige: As a general nephrologist, I have a lot of humility about trying to engage in transplant-related research because I'm not a transplant nephrologist. And so, the space that I have most occupied has been in understanding and trying to understand the barriers between general nephrologists and transplant centers in terms of getting patients to that end, ideal goal of transplantation, if that is a patient's wish. And I think there are several factors here. First, when we're providing information about what chronic kidney disease is and how they can prevent and manage it, and when we're talking about the treatment options that individuals have, whether it is home dialysis or hemodialysis in a center, we must be talking about living donor kidney transplantation and overall deceased donor kidney transplantation with our patients and their families early on.
Setting up the ideal as transplant instead of projecting a long trajectory on dialysis for patients is one of the most important things we can start to convey as general nephrologists. Even before we have that conversation, if a primary care physician, let's say, is identifying somebody who has advanced chronic kidney disease, I think that primary care physicians can and should be empowered to say, you know what, dialysis isn't the only treatment option for my patient who's having advanced chronic kidney disease.
Overall education about this is important, and empowering our patients with an understanding of what their options are is key. The second fact that is so critical, I think, is to understand some of the structural barriers that limit access to kidney transplantation. Right now, there are a complex range of factors that transplant centers consider when they are considering whether a person is a good candidate for a kidney transplant. And some of those factors include things like having access to transportation, having financial resources to pay for immune suppression, having a strong social support network that can ensure care after a complex procedure like a kidney transplant, and having health literacy that allows you to take immune-suppressing medications. Part of the reason we see some of these racial inequities is because resources and opportunities are not fairly distributed in the United States, and they certainly, and unfortunately, are not fairly distributed across every one of those domains that I just mentioned: transport, financial resources, insurance, etc. From a health system and policy level, it is critical that nephrologists get involved and advocate for policy reform that can actually decrease the inequities in those key factors that are often barriers to kidney transplantation. Those are two of the important things we can do.
The third thing is that each of us — and our transplant centers and all the staff who are part of the care process and part of the process of referral and evaluating our patients — have a lot of work to do to interrogate our own biases. Some of those are conscious and many of those are unconscious. We need to think about how those biases get in the way of us ensuring that the right things happen for our patients in terms of getting them to kidney transplant, again if that is their wish. We need system-level interventions that can help us bypass some of that bias. For example, when your kidney function drops to the level where you're potentially eligible for a kidney transplant, we need something like a best practice alert, if you're using an electronic health record, so that whatever bias might exist is not necessarily getting in the way of a provider ensuring that that patient is then sent to a transplant center for transplant evaluation.
Sparks: Let me just summarize that. We talked about the great disparity among patients who end up on dialysis. We also talked about transplantation and the importance of getting someone through the door of the transplant center. And there are a lot of reasons why patients might not have that ability, ranging from policy issues to just being able to afford or be able to get to the facility. And then also earlier on, I think for our primary care physicians, getting them the right medications; even though we have had a lot of breakthroughs in medications, we still see disparities. Certain patients are getting the medications and certain patients are not. Many of those come from groups that traditionally have been disadvantaged. Let’s get to that point here. What are some of the barriers to getting patients medications? Why are they not getting them?
Mohottige: I think that's a critical question and one that has several answers. One piece of the puzzle is certainly insurance reform and insurance coverage for medications. I am fortunate to work at the Veterans Administration, where, when I feel like a patient needs to get a certain medication that's going to slow their progression to kidney disease, I'm often able to get it, and that's a lot of these new medications that have a tremendous benefit. Without much question, I'm able to ensure that veterans can get these medications. That same ability to access disease-modifying therapies really ought to be there for every single person living in the United States. We still have a number of individuals who are uninsured and even more who are underinsured, and that is often an enormous limitation to getting those medications.
I think the other important piece of the medication conversation is building a rapport so that when you're introducing a new medication to a patient, you are ensuring that they understand the benefits from it and ensuring that they understand the risks. That they know the things to watch out for and that they have trust in you and trust in the system to start taking a new medication if you're introducing a new one into the arsenal for them.
One piece of the puzzle, in everything that I've discussed so far, is developing a rapport and being trustworthy so that we can build the trust that it requires to get our patients to follow a course that is optimum for their kidney health. I think the third thing is considering the other barriers to getting key medications, like insulin, for example — diabetes is one of the most common causes of chronic kidney disease in the United States. And if you're a person who requires insulin therapy, if you don't have food or housing security, how can we ensure that you have a place to store your insulin? How can we ensure that you have foods that can help to manage diabetes? Part of ensuring that everyone has optimum medications is again addressing these social determinants like housing and finances and insurance that are critical components of ensuring that a person can actually take those medications consistently and safely.
Sparks: Let's move to another topic, and it's something that I want to try to go into a little more detail on, and that's these social determinants of health. Can you tell us a little bit about that and how that can be useful information when you see a patient to help in treating any chronic disease, especially chronic kidney disease?
Mohottige: Yes. Thank you for that question, Dr Sparks. It is, I think, one of the most sobering realities for us as physicians to recognize, and I think public health professionals have recognized this for a long time. So much of what contributes to a person's health or wellness is not in the 30-minute encounter that we may have with them during a clinic visit, it is in the social determinants or social drivers of health; that is, access to transportation; access to insurance; access to food, housing, a safe place to live, a safe place to walk and exercise, clean air, clean water — each of these factors are part of what we call the places where people live, breathe, work, and play. [They are] social drivers of what contributes to a person's health and can really change the trajectory of whether you are, again, healthy or not healthy. When we are getting to know a person who comes into our dialysis unit or to our clinic, one of the most important things we can do is get to know them holistically, as a person, and start to understand what are those barriers and facilitators that are social drivers impacting their health, who is their family, who are their social support network? What does that look like for each individual? Where do they live? Is it a safe place? What kinds of help do they have within their community? What kinds of things are in their community in terms of places to exercise and have physical activity, places to go and buy fresh food, places to get their medications? What are the transportation barriers to coming to your clinic? All of these pieces, which are fundamental to a person being able to live the best life that they can in a holistic way, are things that we can try to explore as we get to know them as a complete person, and then ultimately as a provider, I think it's our responsibility to recognize how much influence those factors actually have on their ability to have the best, not only kidney health but overall, health and that includes mental health.
Sparks: When you look at what's happening right now in the nephrology space, what are you most excited about regarding achieving equity in kidney care? What are some things that you're looking at and saying, “wow, this is a positive thing, we're moving in the right direction”? I know we're not getting there, but do you see anything that you wanted to leave the listeners with?
Mohottige: I am proud that, in the last few years, our community has reckoned with a number of things. First, I think that nephrologists had an opportunity to really understand how we were thinking about race and risk in the last few years, and that involved the way that we calculate kidney function. And what some viewers may already recognize in the United States is a new plan forward or path forward in which race is not accounted for — Black race is not accounted for in kidney function estimation in the way that it was. This was essentially our field saying definitively that we need to recognize that race does not equal biology and that so much of the inequities that we have seen in kidney outcomes are related to racism and the way that racism has created unequal opportunities, unequal resources, and again, inequitable access to health-promoting social determinants of health. That’s one piece. I think that the fact that we rallied around that piece also brought so much new energy from medical students and others into the community. The second thing that I'm really proud of, and I am a member of the National Kidney Foundation and the American Society of Nephrology (ASN), is that both organizations, and in particular the National Kidney Foundation, have made tremendous strides to engage patients and their loved ones in the way that we do advocacy and think about the next key advocacy aims that we have, whether it's in transplantation or in educating individuals in the population about chronic kidney disease. And I think that some of those conversations with patients have really pushed us as kidney care professionals to understand how we can better partner with community-based organizations, with folks like community healthcare workers and others who are trusted members of a community to increase knowledge around chronic kidney disease and other factors. Our engagement with patients and not only our engagement but the elevation of the patient’s voice as something that we need to drive, how we think about the next research questions, what we prioritize in the legislative agenda in terms of policy … I am proud that there has been more of that partnership going on, centering why we’re all here and why we’re all doing this. We're doing this to improve the lives of people living with kidney disease. We’re doing this so that we can finally start to tackle these egregious disparities that have been problematic for decades.
Sparks: As a program director, I think it's evident that more and more trainees are interested in this area, and to me that is a positive sign. I remember the very first talk I ever saw about this topic, and that was probably a decade ago, and it was just something you never saw before. And now ASN is embedded with talks on these topics. Everyone seems to be united to try to tackle these issues and obviously you're on the leading edge of that. I want to just stop and pause here and talk about some of these very important areas. The social determinants of health are something that I started thinking more and more about over the last several years, about race not being biological. I want to talk a little bit more about that because I think this is something that all of our listeners can really think about in more depth. Can you tell us about what is packed into that and the problem that we're trying to disentangle right now?
Mohottige: It's an incredibly complex problem, and it's hard to even disentangle it. But I think fundamentally what we are all aspiring to do is what I would call, and what's been described in the literature as, race-conscious equity. And what that means is that we don't stop using race in terms of our studies, right? Because if we don't continue to ask people how they describe their race and then try to see if there are differences in outcomes or differences in processes, we won't even know that a disparity exists, and we certainly can't tackle it if we don't even recognize that a disparity exists. I think the move forward is not to completely remove race from our language, in terms of the studies that we do. We need to continue to understand where disparities exist, whether they're in transplant, in predialysis care, etc. But what we do need to unpack better, and what has been demonstrated again in our community through this ASN/NKF task force … that work toward the elimination of the Black race coefficient from kidney function estimation … is getting rid of this idea that there is something inherent or some inherent genetic or biologic truth about someone's race.
The truth is that race has always been a sociopolitical construct. It's something that, in the Enlightenment era, was created in part as a tool, unfortunately, that perpetuated racism, but it was a tool that helped to differentiate individuals based on how they looked … skin color, hair color, etc. And it has never really captured genetic essence, right? There's a tremendous amount of genetic variability within races and across races. And it turns out that there's more genetic similarity between races than within races in many instances. What this has meant for the nephrology community is ensuring that when we're talking about risk or a higher risk of having a bad outcome or a higher rate of having kidney failure among Black individuals vs White individuals, it's really understanding the risk as a byproduct of racism and inequitable structures rather than as an inherent biologic risk. This doesn't mean that we don't need to continue rigorous biologic investigations. We do need to continue those, and part and parcel of achieving greater racial equity is understanding the genetic risk factors that cause more rapid progression in certain groups. But again, we have to avoid equating a person's race with having a specific genetic risk or specific biologic risk. We need to be able to understand again how racism, sexism, and other types of inequity really shape the kinds of care that people can get and the kinds of resources that they can get. And that that, in fact, is a key driver of disparities in outcomes in kidney disease.
Sparks: Well, I think we've come to the conclusion. I wanted to leave with one or two points for our listeners. What are those two points that you want them to go home with so that when they see patients in their clinic, they can become the agents who are going to fix this problem.
Mohottige: Thank you. I think that the one piece of this conversation that has been so humbling, again, is the recognition that although we are one piece of a complex landscape where people get their care, getting to know our patients more holistically, understanding the factors in their life that help them improve their kidney health or stop them from improving their kidney health, getting to know their values, getting to know what they want in the next five years, what quality of life looks like for them, I think, are all key ways that we can try to ensure that the treatment that we're giving and the recommendations that we're making are really in line and doing them justice. I think part of that is also listening to those things that they say are barriers and taking the frustration that we may feel as clinicians, whether it's frustration about our patients not being able to get the care that they need in terms of medications, we need to take that frustration and translate it into policy advocacy, engagement with our national organizations, and pushing some of those major equity initiatives forward. I think the second thing that is an important takeaway is that diversity, equity, inclusion, justice — all of these conversations are not separate conversations from nephrology, healthcare, or kidney care. They need to be integrated into everything that we do, whether it is our educational mission, our clinical mission, our policy missions, we need to be thinking about everything from the perspective of “is this equitable?” And if it isn't, why isn't it? And how can we fix that?
Sparks: Thank you so much for being with me today. We've had the pleasure of talking with national expert Dr Dinushika Mohottige, discussing disparities in care in chronic kidney disease management. Thank you so much for joining us for episode 4, and I look forward to another great discussion in episode 5. This is Dr Matthew Sparks for Medscape InDiscussion.
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Cite this: Disparities in Care: Race, Equity, and Chronic Kidney Disease in the United States - Medscape - Oct 12, 2022.