The Northwestern Medicine African American Transplant Access Program with Dinee Simpson, MD

Erin Spain: People who are Black make up, the largest group of minorities in need of an organ transplant. That's according to the Office of Minority Health at the U.S. Department of Health and Human Services. In 2019, Northwestern Medicine launched the African American Transplant Access Program to help address this problem. Dr. Dinee Simpson is the founding director of the program and an assistant professor of Surgery in the Division of Organ Transplantation at Feinberg. She joins me to talk about the barriers to organ transplant for Black patients and how she's working to bring down those barriers here in Chicago, with innovative outreach community engaged research, and more. Welcome to the show.

Dinee Simpson: Thank you. Thank you for having me.

Erin Spain: You are one of nine African-American female transplant surgeons in the country, and you specialize in kidney and liver transplant surgery. Share with me how you came to this field and how you came to Northwestern.

Dinee Simpson: I embarked on my career in medicine knowing that I wanted to be a surgeon, I just didn't know which kind. And luckily, the general surgery training requires you to kind of sample a little bit of everything. And so in my third year of my general surgery training, I got to spend some time on the transplant service. And there were a few things that stood out to me in that experience. The first was the instant gratification of the operation and the technical aspect of the operation. You know, the technical aspect is very appealing. I love the named anatomy, the pressure of time. We have to get these organs in in a certain period of time, and that's very, very gratifying to perform these procedures. And then at the end of that, you have this wonderful surprise of seeing this organ turn pink and actually function. We see urine being made on the table in the case of a kidney and bile being made in the case of a liver. And so it's really wonderful. And then we communicate with the anesthesiologist and hear how the patient is stabilizing and how they're improving immediately with this new transplanted organ. So very, very gratifying. And so that struck me, and I was like, oh my gosh, I need to do more of this.

But also what struck me was, later on in that rotation in the clinic, surgeons actually are kind of stereotypically known to hate clinic. We prefer to be in the operating room, but you know, clinic is very important and how we interact with our patients and in the transplant clinic is quite different than most surgical clinics because it's not just: you have a problem, I'm going to fix it, sign on the dotted line. It's: you have a problem, it needs to be fixed, we don't have enough resources to fix it. So we need to actually convene as a group and judge whether or not you are a candidate for this operation. And in that experience as a resident, I saw a number of Black patients come forward for evaluation for transplant and watch them struggle with the process, struggle much more so than other patients. And I saw barriers and all of these observations. I went to the literature and found that there actually have been hundreds of papers, thousands of papers written about the barriers that Black patients face when trying to access the transplant process. My interaction with those patients and how they responded to me: Most of those patients when they saw me were seeing the first Black doctor they'd ever seen. And that was really remarkable to me and really impactful. And so all of those experiences together really spoke to me. And I knew that this is really where I needed to be.

When I was applying to fellowship, I wrote my fellowship application about an aspiration to create a program that would address these barriers for Black patients trying to access the transplant process. You move ahead a few years in my career when I was finished with my training and I was actually in another faculty position and I still had this dream. Through numerous conversations, I – you know, transplant community is very small community. – Northwestern heard about it, and they called me up and they said, "Come on over. We want to talk to you about this." And that's how I arrived here. They were very welcoming of the idea and very supportive.

Erin Spain: So let's talk a little bit, some background about organ failure, specifically the organs you transplant, kidneys and livers. What are the leading causes? What brings people to see you?

Dinee Simpson: For kidney disease, the top two causes of kidney disease are high blood pressure and diabetes. There are many, many other causes on the list: things from genetic causes to anatomic issues, kidney stones to things like medications – certain medications can be what we call nephrotoxic, or damaging to the kidney. So there's a long list of causes, but diabetes and hypertension are at the top of the list. For liver disease, we see hepatitis C as a leading cause; we see NASH, which is fatty infiltration of the liver as a leading cause; there are also genetic causes of liver disease as well. Alcohol, of course. And there have been some papers that have shown an uptick and alcohol-related liver disease in the setting of the pandemic. Those are some of the common things that we see when we evaluate patients in the clinic.

Erin Spain: To have the very best outcome, when should someone get a kidney transplant and what should the transplant accomplish?

Dinee Simpson: What I always tell patients is that a transplant not only saves your life, but it gets you back to life. So there's a few things that a transplant is supposed to accomplish. In thinking about kidney disease specifically, we have dialysis. Your question is: Is there an ideal time to transplant a patient? The answer is yes. It's before they ever see a day of dialysis, believe it or not. So what I always tell patients is that if I were to clone you, okay, and take one of you and leave you on dialysis and take the other one of you and transplant you. I would expect the transplanted patient to live two and a half times longer than the one who stays on dialysis. So that's not two and a half years. That's two and a half times longer. So there's a survival benefit to being transplanted.

Now, the longer a patient is on dialysis, the smaller that survival benefit becomes. And so it's ideal to get a patient transplanted as soon as possible. To get a patient transplanted before they see a day of dialysis, that really requires coordination. It requires excellent primary care, nephrology care, somebody looking out for that patient and saying, "Okay, the time is now," educating this patient about transplant long before they need it so that they have their ducks in a row to say, okay, I have a living donor lined up. I have my social support lined up. That is unfortunately something we don't see very often, but even if a patient can't get transplanted before they see dialysis, getting them transplanted early in the process is ideal.

Erin Spain: Now kidney disease is a leading cause of death among African-Americans. Black people are, I think, four times more likely than white people to develop kidney disease. Why aren't there more Black patients getting transplants early on? What barriers are out there?

Dinee Simpson: What I often see are patients who finally do make it through the transplant process coming to me who have been on dialysis for seven years, nine years. I just transplanted a woman who had been on dialysis for 13 years. And there are a number of barriers that Black patients face when trying to access the transplant process. The transplant process is a continuum and it's, as I tell patients, a marathon and not a sprint. The first step is they have to have their disease diagnosed. If there, and there is, a poor access in many black communities to good primary care, to good specialists, nephrologists, then there's going to be a delay in that diagnosis. There's going to be a delay in specialty care that they need. So that's the number one barrier. Once a patient gets referred to a specialist, then they need to be referred to a transplant center.

And sadly, there is some data out there that suggests that, for some unknown reasons and some reasons that we can kind of guess at, Black patients aren't being referred to transplant centers, they're being kept at dialysis centers – another barrier that patients will face. Once they learn about transplant, they get referred to transplant, then they arrive at the transplant institution and they have to jump through a series of hoops to prove that they are a good candidate to undergo this operation. There are very straightforward hoops that refer to their anatomy or their disease process. Those are kind of more black-and-white, if you will, where we say, "Okay, what are the objective things that we can say will make you high-risk for a transplant or not?" So for example, if somebody has terrible heart disease, such a weak heart that they wouldn't be able to survive the stress of a transplant surgery, that is a very straightforward objective measure that we can say, "Okay, this is not someone to take to the operating room right now."

We may refer them, if there is the option for them to have an intervention, to make them a transplant candidate. But at that point in time, we would say, "No, you can't be listed." But then there are less objective things that are, sadly, things that put Black patients in particular at a higher disadvantage. And that comes down to things like social support, showing adherence or demonstrating compliance, which is the popular word used, insurance and structural barriers for patients, structural racism, certain communities at a disadvantage when it comes to these specific things. And Black patients will suffer.

Erin Spain: So how does the African American Transplant Access Program address these barriers? What's the mission?

Dinee Simpson: Our mission is to mitigate the disparities. I cannot claim that we will get rid of them altogether because when you look at the barriers that black patients face, as they are published in the literature, there's a long list. And what I did is I actually pulled every single paper that has been published – it was over a thousand papers – and I read them and I made a spreadsheet of the different reasons that were documented in literature that patients were not getting transplanted. I identified a few modifiable things that we as a single program can address. And the number one that we really work hard to address is distrust in the healthcare system – and this isn't exclusive to transplantation. This is something that is pervasive in all of healthcare when it comes to Black individuals accessing the healthcare system, there's a lot of distrust. And for good reason. We have a very dark history here in the U.S. when it comes to the mistreatment of Black individuals in the name of healthcare. The most popular is obviously Tuskegee or the story of Henrietta Lacks. There is literature about how we can start to address distrust and how we can try to re-earn. A lot of that is around patient-centered communication and racial concordance of the provider with their patients, so me looking like my patients actually goes a long way. Certainly, I've had a lot of patients tell me that. The other things we do in our clinic: I let the patient do the talking, I try to talk as little as possible for a large majority of my visit with them, I try to use very little medical jargon and giving the patient time to be heard, giving them time to ask questions. Almost a hundred percent, out of each visit, I have a patient telling me, "Wow, this visit means so much to me, like I got to speak. I feel like I was heard. This was fantastic. I feel like I'm going to be taken care of here." And so that's one thing that we try to address in the clinic. The other thing that we try to address is health literacy. There is research, again, that shows that poor health literacy and chronic kidney disease sits almost exclusively with minority populations. It's something that we need to address and something that I like to point out is that poor health literacy is a patient's ability to sort of navigate their diagnosis and the treatment that's prescribed to them, to understand their disease. It really is not linked to educational attainment. So somebody can have a college degree and still have poor health literacy. But we have a health literacy coach who works with our patients and helps them kind of navigate the process, helps them to set goals to be able to work through the transplant evaluation process to better understand their diagnosis and what they have to do. And then the third area is around psychosocial, and so we also have a dedicated social worker in the program who has a wealth of experience in serving underserved populations. She is a Chicago native, and she knows of so many community resources, state resources, hospital resources that can really help patients get over those barriers and get to transplant. We are helping to turn barriers into opportunities. As I said, everything that we see that's modifiable, we can make a change. We will try to make that change to help turn that patient who oftentimes has been told at other centers they are not a candidate, to turn them into a candidate here at Northwestern.

Erin Spain: I want to hear about that. Tell me about the successes of the program to date and how in demand it is.

Dinee Simpson: Yeah, I mean it's a young program, as you said. We started in 2019. We do have some really great early data, which, if you look at our transplant program as a whole – and the African American Transplant Access Program is housed within the overall transplant program here at Northwestern, so our success is the transplant program's success, our numbers are their numbers – if you look at referrals and listings prior to the initiation of this program, so if you look back at 2017 and then you compare to 2019 or 2020, once the program has been in place for about a year, we have seen a 55 percent increase in evaluations of Black patients and an 18 percent increase in listings. The program is very much in demand and we have a satellite clinic that is exclusively for the African American Transplant Access Program that's booked out into the middle of 2022. We have a lot of people who have heard about it and who want to come, and it's just really great to see.

Erin Spain: Satellite clinic. That's in a south suburb. Tell me about that presence there.

Dinee Simpson: That, it's a fantastic location. And what that really is designed to do is mitigate one of the huge barriers around transportation. Eventually the patients will need to come to our downtown campus to get transplanted, but for the evaluation process, it's such a weight off for them to be able to go someplace that's close to their community or within their community. And so that's made a huge difference there. We don't do any procedures there, there's no transplant that's performed there, but it's the gateway to the transplant program. And it's where we do our evaluation visits. And so we run that, that clinic has been in existence for almost a year now. And we have clinic there about once a month.

Erin Spain: Access to healthy food is an important element of preventing kidney disease. Tell me about your community engaged research that's addressing food deserts in predominantly Black communities in Chicago.

Dinee Simpson: I would say that one pillar of Black culture is food. We love us some good food. As I was embarking on this journey, one of the things I really needed to do it, and this is tied in with the distrust piece, is I needed to become a trusted face in the community. You know, you can't just show up in the community and say, "Hey, I've got a solution for you" and have everybody jump on, because there's a lot of skepticism there. And so in that journey, I have met a lot of community members and church leaders, because also a pillar in the Black community is religion. And we got to talking and laughing about church dinners. This was specifically actually with Pastor Harris at Bright Star Church. We were talking about church dinners and about what is often at church dinners. And it's not the healthiest food.

Erin Spain: It's delicious, but–

Dinee Simpson: It's delicious. But you know, when we talk about salt content and fat content and all the things that we are advising our patients to stay away from who have kidney and liver disease... We actually met with community members a couple of times and said, "You know what? You tell us what you perceive your barrier to good healthcare. What do you think is an issue?" And resoundingly, it was food. It was access to healthy food. If you look again at a map of Chicago, I talked earlier about how Chicago is a great example of the structural barriers, if you look at the Black communities, that is almost exclusively where all the food deserts in Chicago exist. And so you can imagine, when we see patients with kidney and liver disease, the diet that we prescribe to them is so strict. And then also think about the health literacy. With my community partner, who is actually a deacon at Trinity Church, a large church in the Black community, we've decided to try to address this. Now, Trinity church has already been trying to address the issue of access to food. I'm coming in, you know, late to the game there with them, but what they have established is a food pantry. In partnership with them, we're bringing in a dietician and we're going to educate patients about healthy food choices, addressing some of the education piece of it, but the pantry also addresses access. And then through that, we also are hoping to pull together a group of interested community members who then can sort of take this to the next step further to advocate for their community and advocate for policy change, to change the reasons that this community is a food desert in the first place. This is a project that we have ongoing and I'm really excited about it. And we're hoping to not only engage with the community, but to study the outcomes of it as well.

Erin Spain: And tell me about how that's funded.

Dinee Simpson: That is funded through Northwestern. I'm so very fortunate to be one of the first racial equity grantees. This is the first year that they've had this program. There were a number of grantees and our program is one of them to receive it, so very grateful for that funding and really grateful for the role that Northwestern is taking in the community.

Erin Spain: What advice would you impart to other hospital transplant programs, maybe some folks who are listening now who struggle to get Black people kidney and liver transplants. What advice can you give?

Dinee Simpson: Advice that I have to other programs for trying to get more Black patients through the process is that we have to see color. We have to see differences. I think a popular thing for people to say when they try to demonstrate that they're an ally or that, you know, they're supportive of different cultures, is they say, "I don't see color. I don't see any difference," but we have to see these differences because it's these differences that are holding our patients back. We have to have tailored programs to help mitigate the barriers that different groups are facing when they're trying to access the transplant process. And it's not until we recognize those differences and those different barriers that we can really truly start to help different groups.

Erin Spain: How do you hope to see this program evolve in the years to come?

Dinee Simpson: I would love to see it evolve in a couple of ways. I would love to see it evolve in number across the country. So having an African-American transplant program outside of Chicago and other areas where it's in need. Now obviously, you know, the demographics and sort of the way we're distributed throughout the country will mean that you don't need to have an African-American transplant program in every program. But certainly there are many locations where they could benefit from something like this. The other way I would love to see it evolve is I would love to see it evolve outside of transplant. Social determinants of health, structural and institutional racism, that extends well beyond transplant, that extends to trauma, that extends to cardiovascular health, to maternal fetal medicine. There's a need for us to recognize the barriers that different communities face when they're trying to access good healthcare and to create tailored approaches to mitigate them.

Erin Spain: So you would say Northwestern really is a pioneer here by starting this program.

Dinee Simpson: Absolutely. We're the first in the country to have a comprehensive program to address the barriers that Black patients face when navigating the transplant process, and we also have a program for the Hispanic population as well. So we are certainly a pioneer in that regard.

Erin Spain: So you've mentioned a few times on the show, how important it is just for patients to see you, to see a Black transplant surgeon and how, for a lot of people, it immediately puts them at ease. And so this begs the question – there aren't very many, especially female, Black transplant surgeons, as we mentioned: What can be done to address this and encourage more young Black women and men to get into the field?

Dinee Simpson: Just like the patients seeing us and feeling at ease and feeling some comfort and hope in seeing a Black surgeon, it's the same for students, it's the same for trainees. And so all along the pipeline, starting back at grade school and elementary school, seniors or high school rather, up through medical school and surgical training, we need more people to be visible, more Black surgeons to be visible, more Black transplant surgeons to be visible, for them to recognize this is achievable. And also to spread the message that there is a great need out there, but we have to let them know it's possible. If you see it, you can be it is a popular phrase out there. If you don't see it, it may not come to mind that you can be it. We need to do more work in developing our pipeline. And we're doing some of that. In American society of transplant surgeons, we're having discussions about how we increase our pipeline and specifically the pipeline of minority surgeons, so that we can start to make a difference for our minority populations.

Erin Spain: Thank you so much Dr. Dinee Simpson for joining me today, telling us about the program and some of the exciting work you're doing.

Dinee Simpson: Thank you so much for having me.

Erin Spain: Thanks so much for listening. Please subscribe to Breakthroughs on Apple Podcasts or wherever you listen to shows. And if you are a medical professional, you can claim CME credit just for listening to this episode. Go to our website, feinberg.northwestern.edu, and search "Breakthroughs CME."