Podcast – Addressing Social Determinants of Health in Kidney Care

Dr. Kareen Simpson’s nephrology practice, Associates in Nephrology, serves the minority community on the southeast side of Chicago. She joins Kidney Health Connections for a discussion on the critical social determinants of health (SDoH) that impact patient care, including limited access to healthcare, transportation difficulties, financial barriers, and systemic challenges. This episode also delves into the complexities of kidney transplantation for minority communities, including issues of healthcare literacy, distrust, and the need for early education and referral to improve patient outcomes.

Sharing stories from her own experience caring for patients, Dr. Simpson advocates for a more holistic approach to healthcare, moving away from "sick care" to true healthcare that focuses on prevention and comprehensive support. She sees value-based care as a promising model that allows for more personalized patient navigation, access to care team members who can spend time understanding patients' individual needs, and the ability to connect patients with additional services such as nutrition and social work support.  

Transcript:

Welcome to Kidney Health Connections, a podcast exploring the future of kidney health and the rapid shift to value-based care, where you can learn about the latest innovations that are helping patients live healthier, more fulfilling lives. Here's your host, Dr. George Hart.

Dr. George Hart: Patients impacted by kidney disease already face the challenges of living with a complex, progressive disease which is frequently associated with other coexisting conditions. Once we add on difficult, and sometimes painful, but always time-consuming care, we find patients exhausted with it all, physically and emotionally.

Imagine how much harder it must be if you're also hungry and you don't know where your next meal is coming from, or you don't have a warm place to stay during a Chicago winter.

The data paint a clear picture that the social determinants of health impact both the risk of developing chronic diseases, but also determine the likelihood of getting the right treatment and support when we get sick. Failure to address these issues contributes to both poor outcomes and higher costs. We need to do better.

But what can we do at the practice level to meet our patients where they are and help ensure that they have the support they need? Dr. Kareen Simpson joins us today for a conversation on the challenges her patients at Associates in Nephrology in Chicago are facing and how we can start to address SDoH concerns as a community of nephrologists.

Kareen, great to have you today. I've been looking forward to this conversation for some time because I really am interested in the insights you have, having been a nephrologist in Chicago now in an urban area for quite some time. Tell us a little bit about your practice and some of the challenges you are trying to solve.

Dr. Kareen Simpson: So I'm with a very large practice group, about 45, almost 50, physicians and physician extenders. It spans as far as the lower border of Wisconsin to the sort of mid-sort of 30 miles outside of the Chicago metro area. My particular practice, however, is on what we call the southeast side of Chicago. And in that particular area, we are sort of inundated with minorities like myself. African American probably makes up about 60 to 70 percent of my patient population. And then the other probably 25 percent are Hispanics.

So extensively we're serving the minority community on the southeast side of Chicago. And each neighborhood is distinctly different and with unique challenges for each one as well. But patients typically tend to stay within their neighborhoods. And so as a practice, we have to provide care at the point of service within the neighborhoods.

Dr. George Hart: Knowing that, what are some of the barriers that you find most prevalent in your neighborhoods that your patients come from?

Dr. Kareen Simpson: The biggest barrier for the patients themselves is access to care. Access to primary care physicians; even if they're available, the average primary care physician panel in some of the more renowned hospitals may be as high as 2,000 patients, so even just getting in to see your internist. Access to specialty care; there are whole slots of specialty care that are not available, which, as you know, for the care that we have to provide, if you're going to get a transplant, you have to see additional specialists.

And for this, it means that the patients are not able to access those types of care within their neighborhoods. So the issue associated with travel, the cost of travel, to different places and the impact that that might have in sort of accelerating their care.

In addition to that, transportation is a huge issue. Everything's great in the summer. When it's minus 23 degrees and there's 23 inches of snow on the ground, it's a bit challenging. So for most of the patients, they tend to try to stay within the neighborhoods. So it's very challenging sometimes. Patients simply don't want to travel even to another neighborhood next to them, which for you is a half a mile, for them, it's a 25-minute walk, you know. So there are a lot of challenges, particularly to access of care. And the systems that are there, the physicians that are practicing in those areas, we try to sort of learn creative ways around those challenges.

The other issue, of course, is just the cost of care. So there's significant financial barriers for our patients as well. So even if they do have access to, say, specialty care, what does it mean if I need to give an STLG2 inhibitor? We all know, this has been eight, ten years now, it's proven to decrease cardiovascular and renovascular disease in diabetics and non-diabetics, you know, but my patients can't get it because the average cost of an SGLT2 inhibitor is $900 a month. So if they don't have, it’s not covered by their insurance, it's simply not an option.

Dr. George Hart: Do you have a large number of your patients that are uninsured?

Dr. Kareen Simpson: A fair percentage of our patients are uninsured. It's harder for practices to bring upstream uninsured patients because there's very little that you can actually do with them in a private practice. So my sort of upstream, meaning sort of CKD 3, 4 and up, who are uninsured typically go through our safety net system. And we have a fair number of safety net systems that we can plug them into. But it certainly means a travel from say South Chicago, where I'm at, 60617, to say Cook County, which is one of our big safety net systems. That's a 20-minute, 30-minute drive. Well, it's a two-hour bus ride.

But even my patients that are sometimes completely insured are so used to going to those systems to go get their medicines for free that it's a challenge sometimes to sort of redirect. So a lot of times what will happen is, as a nephrologist, you'll end up being the sole provider for the patients and you'll try to encourage them, like, “You can really get this, say, through, say Fresenius Pharmacy or the Walmart program for say three, four, five dollars, you don't really have to go to Cook County.” And even with that and the encouragement, sometimes they just kind of still plug into that system. Partly related to, you know, their thought as to what are the better hospital systems. And so they tend to stick to those systems.

Dr. George Hart: Assuming that this is perhaps a Medicaid, Medicare Advantage, or Medicare population, I assume poverty is an issue that you deal with all the time and affordability. Is that fair?

Dr. Kareen Simpson: Absolutely.

Dr. George Hart: I mean it seems obvious how that's going to impact patients, but maybe can you give us a little bit more detail on how you see that playing out? I mean my own experience was patients just made choices.

Dr. Kareen Simpson: Correct. So let's take a classic patient that I met for the first time. So this is kind of a classic story that you'll see. Known CKD 4. Never saw a nephrologist until she needed to initiate dialysis in the hospital. Five prior hospitalizations for fluid overload, all cared by for the cardiologist. You've got like 20 nephrologists on staff, never called one. So there was no opportunity to steer her sort of pre-emergent initiation.

So thankfully, she agreed to initiate dialysis emergently, and we did that. But she told me, I will never go to an in-center. And she had her reasons; she had family members that had died. So thankfully her husband was willing to be her partner. It's a little bit of a struggle sometimes for nephrologists to say, “Okay, am I going to offer home?”—which we're all committed to home—without a real good history with a patient.

And not just, you know, everybody will, “Okay, I'll try PD anyway.” Home hemo. Gave her a chance. Spoke with my team. They're really good with home. People I could trust. So we sent her to the home hemo program and we trained her, and she did phenomenally. She had an EF of 15 percent. By the time we were done a year and a half later, her EF was 60 percent, she was listed for transplant, everything was going great. And then, she didn't pay the taxes.

So what does that mean for the home? So we had to work through creative ways. And thankfully it was during the pandemic. And the city of Chicago, sometimes as bad as it is, is kind of good sometimes. But they do waive some of these tax requirements. So we were able to find a creative way to allow her to afford the taxes so they wouldn't claim her home. But for a period of about three or four months, they were like, “I may have no choice but putting you in center, because you may not have a home.”

Dr. George Hart: So let me get this straight. And for our audience, EF is ejection fraction, and to go from 15 to 60 percent is a vast improvement. So what I'm hearing from you is you met a patient late in the course, were able to get her on the right therapy, which she was thriving on, and it was something extra that then came in and undermined the ability for her to get the care.

Dr. Kareen Simpson: Correct.

Dr. George Hart: So how did you pivot?

Dr. Kareen Simpson: Well, thankfully, I had a really sort of vigorous social worker. And not just a social worker. You have to kind of know the different city, you know, because they all have little different rules. So she actually was technically in Evergreen Park suburbs, and they had certain types of rules that she could apply for special programs that only her social worker was even aware of. And she was able to do that and get that tax exemption on her home. So she was able to reclaim her home.

Dr. George Hart: So she needed an experienced advocate to help her navigate this.

Dr. Kareen Simpson: Absolutely.

Dr. George Hart: Yeah. A very complicated morass of rules and regulations.

Dr. Kareen Simpson: Correct. And she went above and beyond. I mean, this is not something typically an average social worker would do, you know. So those are the kinds of creative things that you have to do to keep patients going in the right direction.

Tell you another story. To this day, we had a young lady, she's literally homeless. But she sleeps by the police station because her brother, who is deceased now, was a police officer for many years. And so the Chicago police guys say, “Okay, you can park your car, sleep in my police station, and you'll be okay.”

She worked with us for a couple of months. She was sleeping there for a while. And then thankfully, we had a really creative social worker that had some connections with some of the homing programs. So we were able to get her a little condo where she now has a little bit of a condo in the neighborhood and she's doing, she's thriving. So you really have to sort of look beyond, you know, initially it was, “Why aren't you coming to treatment?” Well, these are the kinds of things that she was facing.

Dr. George Hart: So you have to be sensitive.

Dr. Kareen Simpson: Correct.

Dr. George Hart: You have to kind of, you know, have your ears open to what's going on to be able to sort through these things.

Dr. Kareen Simpson: Correct.

Dr. George Hart: How long do you think it takes providers to develop that kind of acuity?

Dr. Kareen Simpson: Years.

Dr. George Hart: Yeah.

Dr. Kareen Simpson: Years.

Dr. Kareen Simpson: Because it's really, it's a challenge that you face. As you practice, I think probably the biggest thing that you can be aware of is: know your circumstances, know your neighborhoods, know your service systems and what additional opportunities that they might have.

Because even if you are sort of a single nephrologist practicing or in a group or whatever, there are other health systems that are dealing with the same kinds of things. And if we're all sort of pivoting towards improved quality of care, sort of the value-based care, decreased hospitalizations, readmissions, all the hospital systems in the area want the same things. And they've been working at it with you in conjunction to put in programs that will help everyone collectively. And the more you are plugged into those types of services, the more you're able to sort of pivot and help your patients.

I think, in my journey, I've been practicing for 23 years, about 20 years in the south side of Chicago. And I think it's a kind of natural journey for us as a nephrologist. You know, when you first are out, oh, it's the excitement of dialysis and hospital and things like that. And as you pivot through your journey, it, you know, you sort of shift your focus as to moving from sort of what we call “sick care” to “health.” We want to do healthcare, you know, real healthcare and more preventative type medicines and, you know, things like that.

And I think as you do that journey, you learn what's available within your neighborhood, and then you plug your patients in. But you do have to, kind of, it does get frustrating. Okay. You know, you're always short on manpower at every level, both in the office, in the hospitals, in the dialysis units, you know. You have to sort of be very flexible, always come with your running shoes, and never get frustrated. That's what you have to do. But then you have to sort of take a step back, if it gets too exhausting, and then start again.

What I do is I just look at individual patients. So I do the best I can for that particular patient at that particular time. So you focus on individualized care for particular patients, but then you also sort of plug into systems. So if I know that this particular system has better opportunities for my patients, then I try to steer them towards that particular system so that they can get the additional benefits that they wouldn't necessarily get in other places.

Dr. George Hart: You know, when I listened to you describe what you just described, it strikes me that there really aren't mechanisms in a traditional fee-for-service environment to provide the resources necessary to fund how you solve some of these issues. Value-based care offers, you know, at least some opportunity to do that. Are you seeing a difference as your practice now participates in some of the value-based care initiatives with better resourcing and capabilities and care navigation for your patients?

Dr. Kareen Simpson: Absolutely. So, our RCC, who…

Dr. George Hart: Which is renal care coordinator…

Dr. Kareen Simpson: A renal care coordinator. Was actually excellent, she's excellent. So, she has the advantage that she worked on the other side. So she actually worked in dialysis unit. She has a full understanding of what that world is like. And when she decided to work with your team, you know, she really was passionate about wanting to go upstream and sort of steering the course. So she sort of engaged with our patients. The biggest benefit was her having the time to connect, to have the time to listen to the patients and understand where they're coming from and understand what their needs are.

So there's a standard gamebook plan, you know, do this, do that. But what she could do is give that additional time to really connect with the patient so that she could move them onto the next level. So, you know, as part of what we do with our value-based care thing, we have a monthly meeting where we go through our higher type risk patients. And every time I'm always impressed about the stories that they give you about the work that they've done moving patients that were initially, “I will die before I do dialysis,” and now they're thriving, not even having started dialysis.

So certainly, you know, having that particularly, you know, the sort of personal touch that we, no matter how we are, I mean, we're still running, you know, it's 60, 70 patients a week or whatever. You don't have the time to really do that one-on-one connection in the way that they can. That's one huge benefit.

The second huge benefit, for my patients certainly, were the additional services, the nutrition services that they can do remotely. The social work services that they can do. And you know, they have, because that's an enormous amount of time that really is very critical for impacting the course of their care. And so I have a lot of patients that have taken advantage of that, whereas that's something we couldn't traditionally offer.

Our Fresenius team members, they have their kidney care coordinator education program, so typically our patients will go to that. I'll tap my best home nurse, and she'll educate my patients upstream as well, you know, as they have to make these more difficult decisions.

One of the biggest Achilles heels, I think, still for us, and in spite of the fact that we're in Chicago, you know, we have six transplant centers, we have six transplant centers in a 20-mile radius, and yet still preemptive transplants in the minority community is still, you know, abysmally low. And there are lots of reasons for that that I'm sure we can discuss as well.

Dr. George Hart: I want to get into that, but before I do, I have a question. As I hear you describe how navigation occurs for patients, a couple of things come to mind. One is it would seem to be really helpful to see patients sooner rather than later so that we have time to do things. But secondly, it also strikes me that as physicians, we need to let go and realize that if we empower other caregivers to function up to the level of their license, that they can move the ball forward in a way that sometimes we can't. Am I thinking about it correctly?

Dr. Kareen Simpson: Absolutely, absolutely. So seeing the patients earlier is a little bit more of a struggle. And thankfully, I think over the 20-year period, I've seen the needle move on that. And yet still, if you read the literature, the vast majority of minorities are still being seen extremely late. You know if you look at that sort of one 20-day window or 60-day window before having to initiate, still a lot of our African American patients are still just coming to the nephrologist really late.

I think one of the biggest things, of course, we've been penetrating the PCPs’ offices to ensure, “You've got to send these, at least the stage 3.” And we've worked with systems within our communities to ensure that they're sort of doing that in a systematic type manner.

One of the things that sometimes is a little bit of a struggle for the physician is, “Okay, well I can offer this patient because he's in this program, but I can't offer that patient.” And so, I think increasingly what happens is that you're like, “Okay, well if it's good for this group, I'm just going to do it for all. You know, we'll take the hit on the time, but I'm just going to do it for all.” And so there are certain types of things that I try now to do for all my patients, irrespective of the payer, because it's the right thing, it's the better thing to do for the patients, it’s what drives the quality of care. But you know, it is a bit of a challenge to consistently do that. And if you're short on manpower, like we all are short on manpower, it becomes a bit of a struggle sometimes.

One of the best things for any of my patients is that, even the ones that have transitioned on to dialysis and, you know, I think you can see maybe for six months or so, two years later, they're still calling their RCCs just to say “Hi.” You know, that kind of stuff. So they develop relationships that really sort of allow them to cope with the burden of a chronic disease.

Dr. George Hart: Let's get back to transplant.

Dr. Kareen Simpson: Okay.

Dr. George Hart: I was a transplant nephrologist. Wholeheartedly believe in preemptive transplants. But it's an uphill climb. And what you describe is really tough, late referral, a lot of other issues. How do we do better? How do we navigate this in a way so that we improve either or both preemptive listing, but certainly post dialysis listing as well? You have suggestions?

Dr. Kareen Simpson: You have to understand what's happening at their level to start. So there's a huge component of healthcare literacy, or illiteracy, that's not fully understood. So it's not uncommon. You know, we're kind of lucky. We have six transplant centers. They're all within a 20-mile radius. I mean, how is it possible you cannot have access? Well, it is. For a couple of reasons.

Sometimes we'll connect them, and in the patient's mind, that initial connection, “Oh, I'm listed for transplant.” And then when you drill down the details, you haven't even begun. And it's a matter of you spending the time to sort of increasingly, at a very simplistic level, educate them. You know, it's like, “No, we have to do all of this thing.” You know, and you do that by forming a relationship with the patient, spending the time to sort of do this consistently so that they can know that they're going on to the right level.

What we try to do to, we educate the patients. “Well, now that you're listed in the state of Illinois. Well, guess what? Madison is two hours away.” And to their credit, they've redone something structurally with the system where it's much easier to get listed in Madison now than it was, say, 10 years ago.

I think the flexibility of the teammates at the transplant centers have changed a little bit, too. So patients that were completely rejected, don't even bother sending me 10 years ago, are now being listed. So a lot of things are changing.

But still, in terms of potential for donors, there's a lot of uphill work for that, because in the minority community, they don't have a trust in the healthcare system. And then I was listening to sort of a podcast once, and it was like, “Why do minorities not have trust in the healthcare system?” Well, there's a big history, the Tuskegee experiment, you have tons of reasons. But one of the things that was highlighted by this particular author was the fact that a lot of minorities do not believe that if they sign up to be a donor that you will give them care if they're hurt. That you'll just allow them to die, you know, and that's another, you know, hurdle that you'll have to get over.

So part of all of that is understanding the barriers of having, you know, minorities sign up to be donors is also a part of it. There's a cultural piece to it, you know, that you'll have to work through as well. So those are kinds of some of the things that you'll have to sort of, you know, deal with. One of the things that's good, the only, probably the only good thing that came out of the pandemic, was telemedicine.

So now what's happening is even the initial contact with a transplant, we can do it by telemedicine. And they've always been, generally, most of the centers have been good about coming into the dialysis space and sort of meeting the patients, that kind of stuff, so that's not much of a struggle. But certainly upstream, it's still a huge struggle.

I'll tell you, I had a conversation, we were in a medical meeting with a group of doctors, and we were just talking about transplant. So I had an ortho guy, and he's like, “I didn't know you could be transplanted if you weren't on dialysis.” I'm like, “Okay, he's been out for maybe 10 years.” I mean, so we live in an echo, what I call the “nephro echo bubble.”

We seem to think that everybody knows what we know. And we also seem to think that it's natural to have blood leave your body and go through this machine because it's what we see every day, but it's not. And so, whatever you can do as a nephrologist, in whatever sphere you are, to ensure that people understand significant changes in the way we offer transplants to patients, you've got to send the patients earlier so that we can have the time, because these waitlists are astronomical.

Just to the families, you have to say, “Look, it doesn't have to be a blood relative. Brother, sister, church brother, et cetera.” You know, there's a lot of education. And the good part about all of that is that, generally education is cheap. If you can systematically roll out educational programs, it's not terribly expensive, you know.

The other thing we try to do is we try to plug into systems that are already in existence, so like the NKFI, they'll do their kidney mobiles, and we'll try to participate in those screenings and make sure that they're penetrating our communities. And they do an extraordinarily good job of that. You know, they give us literature for patients that might not have access to literature as well, you know. So those are the kinds of things that we try to do to move the needle incrementally.

Dr. George Hart: Yeah, those all seem really important. Okay, your experience, if you could have three add-ons to help your patients navigate their kidney disease, what would you find most helpful for them?

Dr. Kareen Simpson: Three add-ons? For us, a robust educational piece early. That would be one.

The second thing would be impacting the primaries in the community to send the patients in a sufficiently timely manner so that we could have enough time…

Dr. George Hart: To do the education…

Dr. Kareen Simpson: …to do the things that are critical. That would be the second thing.

The third thing would probably be finding a way to financially empower the patients that are struggling to get to transplants. I don't know how you do that. That's a big one.

Dr. George Hart: Yeah, that's another podcast down the road.

Dr. Kareen Simpson: So those would be the three things.

Dr. George Hart: Yeah, no, those are great. I think certainly all three fit in the construct of how value-based care is trying to help the patient journey. Earlier referral, education, access to transplants, slowing progression. All of those are you know, kind of, I think, wheelhouse opportunities that we have, so.

This is great. I feel like we only scratched the surface here, but thank you for all your insights, for all you're doing in the South Chicago community, and really appreciate you spending time with us today.

We hope you’ll join the conversation on how we can better address social determinants of health and improve health equity in the kidney world. You can find Interwell Health on LinkedIn and on our website at interwellhealth.com. For more conversations on improving care for patients living with chronic kidney disease, subscribe to Kidney Health Connections.