DeRay, Myles, and De’Ara cover the underreported news of the week— including Black people enslaved long after Emancipation Proclamation, a Missouri art gallery celebrating Black History Month, and the life and death of the true “Godmother of Funk”. DeRay interviews Dr. Kristen Nwanyanwu about her work as an vitreoretinal surgeon and her research on health disparity and treatment gaps for Black people and people of color.

Myles https://www.bbc.com/news/entertainment-arts-60330415

De’Ara https://khqa.com/news/local/black-history-month-art-exhibit-featured-in-hannibal

DeRay https://www.vice.com/en/article/437573/blacks-were-enslaved-well-into-the-1960s

Transcript

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DeRay Mckesson: Hey, this is DeRay, and welcome to Pod Save the People. In this episode, it’s me, De’Ara, and Myles, as you know, talking about the unreported news of the week, the underreported news of the week, and the news that you probably should know but for whatever reason you probably didn’t hear about. And then I sat down with this incredible surgeon to talk about all the things eyes. I learned so much from Dr. Kristen Nwanyanwu, who’s the assistant professor of ophthalmology and visual science at Yale University. I mean, there were things that I had thought about before, but I didn’t really know about. But she taught me, y’all. And she taught me so much about the eyes, especially in relation to medical conditions like diabetes, which disproportionately affect Black and brown people. There’s a lot to learn, and I cannot wait to share with you, especially during Black History Month. My advice for your week is to have the conversation, good, bad, in between, sooner than later. Like tell the people you love them. Tell the people it’s not working. Ask the questions. Do it now because you let all this stuff fester and sit, and then it’s just a nightmare later. I had such good, you know, at work every Monday we do shout outs and it’s so great because, you know, there’s so many people working on our team and people do such cool stuff, that like at a point, you really do need to sit back and be like, I really appreciate the way you do that. I really appreciate the way this happened. I really appreciate the way this—and build time for that too. You know, people, when people say, Say what’s in your mind, people often think that that always means the tough stuff. But really, it’s the good stuff too. Make sure you share the good stuff. Here we go.

De’Ara Balenger: Y’all, in honor of our continued celebration of Black History Month and Black History Year, obviously, as according to Kaya Henderson, I wanted to talk about something that’s near and dear to my heart, but it’s actually my family’s roots in Hannibal, Missouri. And so first, I wanted to do that through talking a little bit about an art exhibit that’s now going on in Hannibal, Missouri, in case anyone has a chance to go there. I’m planning on going there early this summer with my aunt Josephine, who, you know, we’ve just decided that we want to get a really understanding of our people, where they’re from, and what we can do to get as close as possible to understanding who they are and what our responsibility is to their legacies. So I want to start by talking about Hannibal Missouri, which is actually the birthplace of Mark Twain, where my people are from. But what’s even more interesting is Faye Dant went and founded “Jim’s Journey: The Huck Finn Freedom Center” in Hannibal. And so that center, interestingly enough, the mission of it is to build cross-cultural understanding by documenting, preserving and presenting the history of the 19th and 20th century African-American community in Hannibal in northeast Missouri. So it was a once-thriving Black community, and the people who built it, we can’t overlook their pain and suffering and slavery and segregation and racial [unclear]—all that went into their experience. But this museum also highlights the extraordinary richness that these Black folks brought to Southeast Missouri, my family included. So I just thought this was such an interesting way to celebrate Black History Month, to give you guys a little bit of something that you perhaps didn’t know about. So if you go to JimsJourney.org, you can learn about this museum. And you also learn about Daniel Quarels, who the character Jim in The Adventures of Huckleberry Finn is based upon. He lived and died in Hannibal. And you know, you can learn more about him and also his family, and how they all came to be and live in Hannibal. So going back to the article that I started with, so if you are in Hannibal or have a chance to go there, Faye Dant partnered with the Alliance Gallery to put together a Black History Month art exhibit. And so it really is featuring artists from all over the Midwest, across the country. It represents, you know, the African Diaspora, the civil rights movement. But I just thought it was so wonderful because Faye Dant is not only doing all that she can, I presume, through her work with the Freedom Center, but she’s also, you know, spreading her wings from there and creating these partnerships to bring Black art, the Black experience, and Black culture across Hannibal. So check it out. There’s, you know, obviously go to the link, to the news article. There’s a video of Faye Dant. And then if you get a chance, you know, dig in to Jim’s Journey, the Huck Finn Freedom Center. Again, it’s at Jimjourney.org. They’re artifacts there online. There’s a video library, they’re testimonials. And so I just, I got a kick out of this. And obviously it’s personal to me because my family comes from Hannibal, Missouri. But I think it’s also going to be one of my goals for this year to get a better understanding of this place and the space, and take some of my relatives there to see what we can find, uncover, and learn about our ancestors, and there learn about ourselves. So happy Black History Month, y’all. It continues. And hope you all are having a great week.

Myles Anderson: Hi, greetings. So this week, my news is the passing is about the passing of funk singer Betty Davis, Betty Davis is one of my favorite artists. I still remember the time I was over my friend, my good friend Mikita’s house and her, her then-girlfriend, still friend, Ariel at the time had this record of this woman like mouth open, and that she was like riding, was riding a motorcycle in the back of it. And just like I was like, what is like, what is going on? In then there was like more records. I believe they had all three. And she put them on and all I can hear is this woman at the top of her lungs screeching, He was a big freak. And then like, intro, these like like nasty, gritty guitars and this like just beautiful bassline. And I was like, Oh my god, this is beautiful. Like, and the music was funky and swampy and sexual and erotic and forthright. And I was obsessed with Betty Davis. I still am. She is the pinnacle of what to me, what’s really important when sexuality and eroticism meets, what meets music and performance. And I think that sometimes we live in a culture where the objectification of our bodies is seen as like inherently radical or the expressing of sexuality is seen as like inherently confidence-giving, but I think what I know about Betty Davis and her music and what it did for me, it was the way. It wasn’t just her being sexual, it was her being in control. It was about her having the authority. It was about her being in the middle of the storm of her desire and her controlling every thunder, every lightning bolt, every gust of wind. And it really transformed my own relationship with my own body and my own exploration. And it changed the way that I forever saw sexuality performed in art. She’s also known, if you do know Bette Davis, you probably know this even though she’s a figure who has, she’s been having a moment actually in the last five years or so, so more people than when I was newly discovered her, knew her. She’s still like, wildly unknown versus how she should be known. But she’s also known as the muse to Miles Davis. So this is the time where Miles Davis actually discovered instruments that were electric and plugging things in, and really had a new resurgence in music. That was Betty Davis, even down to the point of Betty Davis inspiring the title of “Bitches Brew”. And you know, Miles Davis originally wanted to call it one name and then having discussion and coming out totally different and coming out Bitches Brew. I believe it’s it was Witch’s Brew to Bitches Brew, I believe. That was totally inspired by Betty Davis. And then also, you know, I think that fashion and music are intimately linked. Betty Davis was the bridge that took Miles Davis from that dapper, sophisticated Harry Belafonte, Sidney Poitier-esque presentation to something really funky, something really Avant Garde, something really rock and roll, something really experimental, and really gave—in my opinion. Miles Davis had a whole other life from the ’70s to the ’80s til his death that was totally riding on the spark, the flame that was Betty Davis. Betty Davis lived her, the latter part of her life in obscurity, finding spiritual practice to be a home for her instead of the spotlight. But I will always honor those albums and her being in the 70s and her doing things her way, because I think there’s so many things from how your everyday person who’s queer or Black or woman expresses themselves on the internet to, you know, how our bigger artists decide to explore themselves. There’s just none of that without Betty Davis. She really busted the door wide open. And I think even with us talking about Janet Jackson, rightfully so, and Jackson’s sexual explosion and exploration, and when we think about Beyoncé and we debate about Chloe Bailey and we reflect with, you know, tender nostalgia about, you know, the first time we heard or saw that picture of a Lil Kim with her legs wide open, and all the different waves, and Madonna, you know, Prince, all these people—Betty Davis predates all of them. Betty Davis was before every single person who I just listed and that she was doing things that were risqué but also powerful and really sincerely beautiful performance art. And also, I would just be remiss if I did not reiterate, her music is excellent. She was not simply a sexual figure. She wasn’t just risqué for risqué sake. She had an ear for music and certain songs can still, when you listen to “70s Blues”, when you listen to even “He’s a Big Freak”, all of her songs has such sophisticated weight, which is how come somebody like Miles Davis and Jimi Hendrix wanted to be associated with her, wanted to, you know, pick her brain and use her as a muse, is because she was a full-on powerful artist. And I, and I think that, yes, she expressed her eroticism on stage, but she was also an excellent genius musician. Though she had never hit a stage, she never took a picture, that music? Life changing. And the fact that she was such a performer and she was such an esthete with how she, how she presented herself was just icing on the cake. And she will be sorely missed. But we must focus on the gifts that she’s given us. That has been so many. Rest in peace. Rest in beauty, Betty Davis. And hopefully more people who are knowingly, unknowingly peeling and grabbing her and inspirations from her start paying homage, so this Black musician can live an eternity through our collective consciousness and our media productions and our award shows speeches, and our essays, and in the other ways that we keep people in our collective remembrance.

DeRay Mckesson: Don’t go anywhere. More Pod Save the People is coming.

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DeRay Mckesson: So my news is was brought up because there’s a new movie out, or it’s coming out with Keke Palmer, and the premise is that there is a Black woman who is enslaved and escapes and doesn’t realize that slavery ended a long time ago and she just didn’t find out. And she’s like in, it’s really present day, or it’s like ’60s, ’70s, but she thinks that it’s way back. And it got a conversation started online—the movie’s not out yet—but it got a conversation started online, and I didn’t realize that there were a host of Black people and people actually from other nationalities who had been enslaved well into the ’60s, who never got the memo after emancipation, and that there were white slave-owner families that kept people literally in slavery in the South. In the article is entitled “Black people in the U.S. where enslaved well into the 1960s.” It is by Antoinette Harrell, who is a scholar who, she’s a historian and genealogist, and she studies these uncovered cases of Black people living as slaves a hundred years after the signing of the Emancipation Proclamation. And she’s done more than 20 years of research into this. And what isn sort of wild is, is she tells this one story of a woman who comes up to her at an event and is like she didn’t get free—her name is Mae Louise Walls Miller—she didn’t get free until 1963. So her and her father—her father, was one of seven, he lived for a long time—they were, her family was enslaved well into, well past the Emancipation Proclamation being signed. And they were forced to stay on the property. They had no clue that time had passed. They had no clue that slavery had ended. They were, they were literally told if they leave, they would be killed. They were raped. All the worst that you can imagine, but well into, you know, ’40s, ’50s, ’60s. And you know, when you go through and read it, like eventually she runs away and eventually they get away, but—and Mae actually goes on the speaker circuit with the professor, like helping people understand what happened. But she recounts the trauma and the pain that stays with Mae through her whole life. Like, you know, when she’s ever had an event with free food, she just can’t stop eating because she remembers not knowing when she’d ever get a meal again. Or shoes hurting her feet, like a whole host of things. And you know, it’s one of those things that because the enslaved Black people in this country were not allowed to read and write, we will never really know just the full extent of the terror that they lived in. Like, we have some retellings and you know, I’m sure that the depictions that we have in popular media are close to true, but it never even dawned on me that into the ’50s and ’60s, there were Black people who were still enslaved. Like actual enslaved people who like, just their families knew and just did it anyway. Like that just as wild. I mean, it doesn’t surprise me because of white supremacy, but wow. And one of the things that, one of the ways that the author talks about in here is that people were nervous to come forward because these families, the white families still had a lot of structural power in those towns. It was the lawyers, it was the doctors, it was the elected people who like were still having slaves in their family. Like that, it just blew my. I wanted to bring it here, A, because it was something I didn’t know. Like, I literally just did not know this was happening. I didn’t know is a thing. I didn’t know that it was prevalent. I didn’t know that there were scholars studying this, and there were a host of these stories. And second, just to remind you and to remind myself the insidious way the white supremacy works in that like how wild it is to allow people to remain enslaved 100 years after the Emancipation Proclamation, to trap people on your property. To do it. Like, the evil of white supremacy is one of those things that I just, I still feel like our collective work has not uncovered as well. So I want to bring this here.

DeRay Mckesson: Now, last week we had disability justice activist Dustin Gibson on to talk about his work as the director of Access, Disability and Language Justice at the People’s Hub. Today, I sat down with Dr. Kristen Nwanyanwu to zoom in on a health condition called diabetic retinopathy. Doctor Nwanyanwu will guide us through the causes and effects of the condition. We also discussed health treatment, knowledge gaps for Black, people and people of color. It’s one of the things that’s asymptomatic for a lot of people, so by the time you notice it, you’re all screwed anyway and your vision may already be seriously impacted. I wanted to learn from her, she’d been recommended by somebody to talk to you, and who knew eye doctors could be this cool? Here we go. Let’s go. I want you to learn like I learned.

DeRay Mckesson: Hey, you’re listening to Pod Save the People. Don’t go anywhere, there’s more to come.

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DeRay Mckesson: Dr. Nwanyanwu, thanks so much for being with us today on Pod Save the People.

Dr. Nwanyanwu: Awesome. So glad to be here.

DeRay Mckesson: Now here’s a thing, you study diabetic retinopathy. Ooh, I said it right. I said it right didn’t I?

Dr. Nwanyanwu: Yes, you did.

DeRay Mckesson: Look at that. Boom. And a host of other things. And I wanted you, I wanted to talk to you because I know nothing about this, and you also launched a company called Eyeful, which I want to talk about too. But can we start with how you got medicine? Like, did you know it was always going to be eyes? Was this just like your focus when you were a kid and you wore glasses or something? Or how did you get here?

Dr. Nwanyanwu: I love that. You know, my father used to call me Dr. Harris when I was a kid. My maiden name is Harris. And any little cut or, you know, whatever he had, he would say, Dr. Harris, you know, come take a look at this. And so I would come and bring my, you know, cream and Band-Aid or whatever and go over there and help him. And so I also grew up with a disabled brother who had a brain tumor and surgery before I was even born, and so I had a special needs sibling, and I really think that growing up in that environment makes a lot of young Black folk want to be doctors so that you can be in charge of those experiences and settings. So I think that kind of laid the groundwork. And I came up in the first, the first generation of folks that wanted to be a neurosurgeon before said neurosurgeon became something we don’t understand. But so, you know, we all read Gifted Hands, and then I had a brother with a brain tumor. So I went to med school and I thought I wanted to be a neurosurgeon. And then I found the eye, which is the perfect mix. And so I’m very good with my hands and I really wanted to find something that I could do. So ophthalmologists do surgery, but you just can have a very big impact on someone’s life. Sight is really, really important. I’m also a very sensitive person, though, and so I didn’t have the emotional bandwidth to do a lot of the death and other things that happen in other fields. And so ophthalmology was a perfect mix for me. I also come from an activist background. So I was, I grew up in Ann Arbor and I was on the Black Student Union there and did activism around affirmative action, which shows you what generation I’m from. And so I wanted to be able to figure out how to marry those two. And with the access to care issues that come with diabetes and diabetic retinopathy, I’ve been able to, you know, build a career in something that I’m super passionate about. I have been able to, you know, support Black community, elevate voices of Black community that I’m very passionate about as well. And it’s just a journey that is just awesome for me.

DeRay Mckesson: Boom. Can you, what is retinopathy? I know what diabetes is, what is retina—what is diabetic retinopathy?

Dr. Nwanyanwu: Exactly. So what happens in diabetes? The elevation of the blood sugars changes the environment in the body to an inflammatory environment, and it impacts every single cell in your body. And the way that the eye responds to that inflammation is it is unable to deliver the oxygen to the tissues. And all the tissues need oxygen to be able to function. And so what happens in the eye is that the vessels in the eye respond by creating new blood vessels, and those blood vessels are abnormal. I always tell my patients the only time you should make new blood vessels in the eye is when you’re in the womb, otherwise, never a good thing. And then also the blood vessels that you have in the eye, they can bleed and they can break. And so that is actually diabetic retinopathy, the changes that come from having an environment of elevated blood sugar and inflammation in the eye. And it’s a leading cause of blindness, leading cause of blindness in working-age people overall, and much worse in Black folks and brown folks in low-resource communities.

DeRay Mckesson: Is there a cure for retinopathy?

Dr. Nwanyanwu: So we’ve been able to prevent blindness from retinopathy for about 40 years. So while I would say not a cure where we find it, we can, you know, give you a drop and it’ll just go away. But we do have some very good treatments that keep people from going blind, which is why screening is really important. And so the American Diabetes Association and the American Academy of Ophthalmology all recommend regular intervals of screening, usually annually. Because if we find something, there are treatments that we can use. We use injections and we use lasers to try to keep the eye safe and stable and to save folks’ vision. But the problem with health disparities in this field is that a lot of times Black people come and their disease has progressed, it’s very severe, and we’re trying to figure out how to use the tools that we have to save the vision that’s there and oftentimes to save that vision in the other eye as well. So we prefer to see people sooner, which is why screening is really important.

DeRay Mckesson: Let me, let me go back. So retinopathy is damage to blood vessels and you said that the eyes making new blood vessels, and any time that’s happening outside the womb, that’s not a good thing. I paraphrased that correctly?

Dr. Nwanyanwu: Yes! That’s actually perfect.

DeRay Mckesson: OK, so now diabetes is one of the things that can damage the blood vessels in the eye. Yes?

Dr. Nwanyanwu: Yes.

DeRay Mckesson: Are there other things or is that like, is that the primary thing?

Dr. Nwanyanwu: That’s the primary thing. But there are other things. So you can get high blood pressure in the eye. You can get stroke in the eye. Lots of different manifestations, but the one that we’re really focused on because this is the one that is, one that we can prevent and treat, prevent blindness in. We really focus on diabetes and diabetic retinopathy.

DeRay Mckesson: And this is, this is why, tell me if I’m in my field here, but this is why it’s important to get your eyes examined, even if you don’t need an update to your prescription or things like that, because you might not feel this along the way, but it’s like going to be bad.

Dr. Nwanyanwu: Exactly. So a lot of this is asymptomatic, meaning that you don’t even have any idea that anything’s wrong. And then when your eye doctor looks in your eye, they’ll see, you know, bleeding spots or, you know, signs of having fluid in the eye, and then you can go ahead and get you to treatment. So that’s why the screening is really important. But even overall in the US, screening rates are about 60%, and that goes down when you’re talking about Black communities and when we’re talking about folks that are often historically excluded. And so you can think about the rates, if they’re so low, we won’t be able to detect the disease that we want to detect. Which is why people present at more severe stages in the disease when you have symptoms. If you get to the point where you’re having symptoms, a lot of times it’s on the later end of the spectrum.

DeRay Mckesson: Are the disparities between genders or ages, like is this like a later in life issue, or is it more women than men? Do we know?

Dr. Nwanyanwu: So what we know about that is in access to care in general, studies demonstrate that men are less likely to go to seek care. And so we see a little bit more predominance in men. And in terms of age, so it’s more about in diabetic retinopathy, the duration of the disease or how long you’ve had diabetes. So if you can think about the environment that the eye is in and the whole body is in when you have diabetes, and that inflammatory environment, or milieu, if you will, just extends over a period of time. And the longer that the eye is in that state, the more likely that it is to have some of these manifestations or some of the changes from diabetic eye disease.

DeRay Mckesson: Got it. And is the surgery, what’s the most common treatment? Is it the injectable? Is it like, what’s the thing? And is that expensive? Is that covered by health insurance?

Dr. Nwanyanwu: So all of this is covered by health insurance. So when you, the exams—this is an important issue as well because some people don’t have, quote unquote “vision coverage” and so a lot of times people will delay because they say, Oh, I don’t have vision coverage for glasses—but medical covers and medical insurance always covers an eye exam for people with diabetes. So that’s number one. That’s really important. And then 2, you know, sometimes if we see the early stages of this, we can encourage our patients to help manage their blood sugar. So that can be with a nutritionist or connecting with their primary care provider or endocrinologist so that they can work on getting the blood sugars under control. Because that’s actually the first step is getting those hemoglobin A1Cs closer to a physiologic levels, or normal levels. So closer to seven or whatever your diabetes provider thinks is the right level. Now, if it has progressed to the point where you’re getting abnormal vessels or there’s swelling in the eye, that’s when we would treat with lasers or injections. And what those do is they change the environment in the eye, so it makes it uncomfortable for those abnormal blood vessels or the swelling to happen. And depending on what we see when we look in, the treatment is different depending on what we see.

DeRay Mckesson: Have you seen this be exacerbated or impacted or affected at all by COVID?

Dr. Nwanyanwu: The short answer is everything is impacted by COVID. And I really think that we will understand more going forward, just like we have on the rest of things, exactly how. But if you can, if you can imagine back to the time where the world first closed, there’s a lot of treatment delay that we’re dealing with. Also, the transition to telehealth, the eye care profession, fortunately, you’re able to, you know, get pictures of the eye and things like that, but building and building that infrastructure takes a while. And so I think what we are experiencing is people have delayed treatment, and so delaying treatment can often progress disease and you get more advanced disease. And so I think those are the type of things that we’ll see manifesting. And so did people get their laser in time? If they didn’t get the laser in time, did we have to do more surgeries than we, you know, needed to otherwise? And I think once we start to collect those data, we’ll get an understanding about what that means. But I think, yes, I think it’s going to be something that has really impacted, and I don’t think that we’ll really, truly understand the full impact of it for years to come.

DeRay Mckesson: Now what other things are you interested in? Are there are there new frontiers of the eye that we should be thinking about and talking about? This is one of those where it’s like you literally just know so much more about this than I do and I don’t know if there are other things that I should be asking about with regard to the eye or, yeah, or diabetes, for that matter.

Dr. Nwanyanwu: So I think the most exciting things that are coming forward because of what I do is really trying to figure out what are the best care models for different communities. And so I am a health disparities researcher. I’m on faculty in New Haven. I run the Sight-Saving Engagement and Evaluation in New Haven lab. We’re on Instagram. You want to know what we do, @enddrblindness. And so what we think about is how do people access care? What are the barriers and facilitators for accessing care, particularly that screening. So remember, we talked about how important it is to just have someone take a look just to see what is there, to see what you might need, to see how we can support and help folks. So we did a study of people in the New Haven area and we really looked at what were the barriers to screening and what was happening and really talked to them about what were the ways that we can stand in that gap. And so we have a pilot that’s starting that is a patient navigation program, and patient navigation is just that. It’s someone to help guide those persons that are at highest risk for diabetic eye disease through that health care system, which is difficult to navigate even for someone that doesn’t have chronic health problems, to be honest. And so, you know, how can we navigate folks so that they can get the eye care that they need? How can we prioritize eye care on the list of a million things to do, when there are so many things competing for our time and resources? And so I think for eye care, we’re really at a juncture where we’re starting to ask those questions and we’re starting to figure out what does it look like to turn care delivery on its head, and how can we elevate community voices? How can we ask folks what they need to be able to access their best vision health and their best eye health? Which is an intense the actual definition of equity, right? Like, so how can you figure out, how can we work to help folks figure out how to access their best health? And then how can we impact or change health care systems so that they can be more patient-centered and more community responsive?

DeRay Mckesson: So you talk about the work that you do in community. Is the access issue to eye care, high-quality eye care, is that a function of people just like choosing not to go or they’re not enough eye care facilities or eye doctors in low-income communities? Like I don’t, you know what I mean? Like, what’s the, is there a fix there? Do we need to be graduating more people from eye school or, you know—like eye school, Lord, I sound like I just woke up yesterday, eye school. But what’s the fix?

Dr. Nwanyanwu: Good question. So just like all these things, it’s multifactorial. Yes, we need more eye doctors. Yes, particularly Black eye doctors—we’re in Black History Month—so we mean we’re Black optometrists, we need more Black ophthalmologists. We know that folks from those communities tend to work in those communities, which expands access. I also think that this is not something that is on people’s radar as something that can cause blindness, even though it is a leading cause of blindness, particularly in the Black community. So I think we need awareness. The American Diabetes Association is actually doing a “Focus on eye health” campaign this month for that reason, to try to elevate that and to give us more information about that and to tell people that, Hey, this is something that we should be looking out for, and that screening is really important. And I also think that putting it up on the list, I also think that emotional context of diabetes—so diabetes is something that’s really common, particularly in Black community. Most of us know someone that has diabetes. Most of us probably know someone that has a complication of diabetes, including heart attack, stroke, and other things. And so sometimes it tends to be a, Oh yeah, this is just what’s happening to us. Or, you know, this is just old age, or this is just kind of what happens, we lose our sight over time. And that’s not something that we need to do, particularly in this era where we’re able to prevent blindness. And so I think it is education, but it’s also awareness and emotional context. For example, I always tell this story, so we are asking participants of our study about what are the reasons that they’re not getting screened or what are the barriers that they’ve experienced and a big one is emotional context. And for me, the theme that came up was fear. And when you think about it, fear can actually go two ways. So there are some folks that answered and they said, I’m so afraid something is wrong with my eyes, I would go every day and have somebody look just to make sure. But then the other side is, I’m so afraid something was going to go wrong with my eyes that I never want to know, and I just want to live my life. And so figuring out how to tailor a personalized approach, how to meet people where they are in a way that we’ve learned in the COVID-19 era, and to be able to do that, I think, is what we’re going to need. And I, you know, mentioned this before, but I also think we have to figure out what are the appropriate care delivery models and then respond to community in kind. And so we can’t just say, you know, this is what you get because this is where you live. We have to be cognizant of that and ask questions and figure out what are the models that can work, but also what are the models that are acceptable, because it doesn’t make sense to put a new model in if folks aren’t interested in experiencing that. With keeping in mind the warranted distrust of systems that have excluded us for so, so many years. And so figuring out what does it look like to build anew, and what does it look like to, you know, put something together that makes sense, that can screen folks for diabetic eye disease and keep people’s vision so we can keep people in the workforce and keep people supporting their families?

DeRay Mckesson: Boom. And this, can you explain the SEEN clinic to us?

Dr. Nwanyanwu: Oh yeah. So this is actually my lab. So this is a—

DeRay Mckesson: What’s a lab. You know, we all know what’s lab, what is a, like what is a lab?

Dr. Nwanyanwu: I know. What is it? It’s so great. I’m so excited. So this is Sight-Saving Engagement and Evaluation in New Haven. And so it is funded by the National Eye Institute and the National Institutes of Health. And what it is, it’s a group of people that I have convened. I’m the principal investigator. That means I’m in charge. And we think through what are the best solutions for disparities in diabetic retinopathy. So we approach this from three different directions. We look at big data study. So, you know, we have data from all over the country that tells us about how people are getting eye exams, where they are, and what they’re doing. So we do big analyzes like that. Number two, we do qualitative studies like the one I just mentioned where we go in community, we ask questions, and we say, Hey, folks aren’t getting screened, can you help us? Because I think a lot of times in academia, we make a lot of conclusions, but we don’t ask enough questions of the folks that are actually going to be living through some of the decisions that we’re making. So we ask those questions. And then we build solutions. So implementation science is the field where you create sustainable solutions based on evidence-based things. So like I told you, we’ve known that screening for diabetic retinopathy is good. We’ve known that it keeps people from going blind, for 40 years. We’ve known that laser and injection treatments are beneficial, so we know those data, but somehow they’re not getting to communities that need them. And so what our lab does is we design solutions and test them to figure out what are the ways that you know, we can make a difference. And you know, some of the solutions that we are working on implementing right now are the patient navigation we talked about, like pairing someone, also risk stratification: who’s at the highest risk anyway? We have limited resources in society, so who should we really be asking, who should be really be screening? And then how can we find them in an effective, efficient way? And then can we help them to navigate the process to get what they need? And so that’s what the lab does. It is about three-years old. I’m super proud of it and we have more to come. And so we, you know, are affiliated with the Equity Research and Innovation Center at Yale that just is forward-thinking on these ideas and trying to figure out how to get more people in the world actually to their best health.

DeRay Mckesson: I have to imagine that in the lab setting you probably, you probably came in with some hypotheses they were wrong, or you were right about one thing, but then learned a whole new thing that surprised you. What is, what have some of those learnings been like?

Dr. Nwanyanwu: I think what spurs me and the biggest surprise is how little we know about what patients think. In the literature and academia, there are a lot of program that have built, have been built, and there’s a lot of data about those programs, but what is surprising is the limited number of times that we go back and we ask communities where we implement some of these things, how they’re going. Or we ask how the partnerships are working. And I think there are many fields in medicine that do this a lot better than we have in eye care and in ophthalmology, but I think that was my number one surprise, especially because it’s not fixed. And so I think, you know, there’s a area of field which is participatory research or community-engaged research. And when I talk about it, I think that’s the most important thing because we have a lot of big health problems in America and we’re not asking enough questions because we need all hands on deck to try to figure out how we can get folks that have been historically excluded to their best health, and everybody should be involved in that process. It should not just be Yale folks asking Yale folks questions about what’s going to happen to everybody else. That is not a sustainable model and we should not do that. But we do. All the time.

DeRay Mckesson: Are there places around the country or companies or, I don’t know, programs doing really good work around eye health in low-income communities or communities of color? Like are there places that people listening should be like OK, I should know more about them, I should support them, or something like that?

Dr. Nwanyanwu: Good question. So I’ll tell you my favorite. My favorite story is about the L.A. County health system. So there’s a research team that is Dr. Lola Ogunyemi and Dr. Lauren Daskivitch, and they are at L.A. County. And it starts out, the story starts out horribly, where at L.A. County there’s limited resources, as you can imagine. And there were people that would be in the queue in the list for an eye exam with diabetes that would lose vision while they were waiting to be seen. And there was no way for them to prioritize who should be seen first. Right? And you can imagine this list of hundreds and hundreds of people, and there was just limited resources. And so what their team has done is taken the approach of using the data, thousands and thousands of folks, to figure out how to risk-stratify people based on the other things that they know about. So they couldn’t look in their eyes because they hadn’t got to the eye clinic, but they looked at their blood glucose control and their blood pressure and some other factors that were written down or in the computer from their primary doctors, and they were able to figure out an algorithm for the risk for diabetic retinopathy so they could optimize who needs the resources the most and then get them what they need. And they’ve used the system, they’ve publicized this algorithm. I will send you all the link afterwards so you can put it up for your guests. But they are really forward thinking about how in resource-constrained environment to optimize these services and optimize the needs of folks that are there. And you know, they’ll be the first ones to tell you it’s not perfect. They’re applying for more funding to be able to optimize this. But I am completely in awe of the effort and of the forward-thinking and of the practicality in which they have approached struggling with a really, really hard problem—which is what is the safety net for eye care and how to get to the next level? Because most federally-qualified health centers, 70% of them don’t have an eye doctor there. And so you can think about the vulnerable populations that need these services that just don’t have access to them. And then you were also mentioning, you know, insurance and coverage and how to figure out how to get people what they need when vision is really important, because blindness can really impact the ability for a family to be able to get the resources that they need and to work in other ways.

DeRay Mckesson: I want to ask you too, since I have you, is there anything we should know about childhood diabetes and the impact on kids’ eye health or something? Like, I just want to ask about childhood diabetes because I feel like I hear so little about childhood diabetes. I mean, maybe there’s nothing there, but I thought I’d ask.

Dr. Nwanyanwu: No, you’re absolutely right. And I think this is a really important time to bring this up. I told you that I’m on this campaign with the American Diabetes Association, and there is a young woman, Tiffany Robinson, who tells the story about how she had Type 1 diabetes at age five, and she is 27 and she is now completely blind from diabetes. And so that is an all-too common story. And so what happens is when you think about it, we talked earlier about how diabetic retinopathy, one of the risk factors is duration of diabetes. So if you get diabetes and Type1, you are going to have diabetes for a longer period of time than someone that may get type 1, right, as an adult. And so what is important about that is that a lot of times when children are younger, their parents will help them manage their blood sugars and they’ll keep really, you know, close track of it. But the story I hear so often in this disease and others like sickle cell and otherwise, when people get to that adolescent stage, it becomes a more challenging time and hard to manage, especially something that’s as intense as diabetes. And so, you know, what happens is, is a lot of times people will lose control of their sugar and start having complications very, very young. So I have several patients of mine that are in their 30s that have very severe disease. They’re suffering from amputations and heart attacks and strokes and things because of the complications of diabetes. And so, yes. So screening is very important in that age. Diligent blood glucose control is really important in that age. And trying to get across that blood sugar control is really important in decreasing the likelihood of complications going forward, even if you’re planning to live a life long of diabetes, that you have to try to think about the marathon, you know, be on your Nipsey Hussle with it, right? And you have to think about kind of the long-term manifestations of that, but it’s really, really challenging. And those Type 1 stories can be some of the most devastating, honestly.

DeRay Mckesson: That makes total sense to me. OK, well, here we go. Y’all, get your eyes checked. Get it checked, get it checked. We can prevent some things if we know. This reminds me too, I got Lasik and I got a little lazy about getting my eyes checked because I’m like, I got Lasik, but I need to go back and get my eyes back too you, right?

Dr. Nwanyanwu: Yes, you do.

DeRay Mckesson: See, see. I’mma call my father right when we get off this. Like Daddy, go get your . . . He’s going to be like, DeRay. I did. I got him checked three years ago. I can hear him now. Daddy if you’re listening, please go get your eyes checked.

Dr. Nwanyanwu: Three years is too long.

DeRay Mckesson: See. You heard it from the doctor, daddy. Tell people how they can stay in touch with you and follow your work.

Dr. Nwanyanwu: Oh, yes, of course. So like I said, our lab is on Instagram. We also have a website. So we are on the DL New Haven website. But follow us on Instagram. So that is enddrblindness. So that’s our handle. And then our website is there on Instagram. And you can follow me, I’m Kristen Nwanyanwu and I’m on Twitter. Dr KNWAN. And I just like to talk about these issues and I like to help folks. And I think it’s really important, and disparities are my thing. So thank you so much for this time.

DeRay Mckesson: And there are two questions we ask everybody. The first is what do you tell people who are like I’ve done everything, I called, I emailed, I listened to the pod, I donated, I stood in the street, da da da—and the world hasn’t changed like they wanted to. What do you say to those people?

Dr. Nwanyanwu: This hits me really deeply, because my girlfriend in this work, Dr. Angela Elum, we talk about this all the time. We do racial and ethnic health disparities work, which means if there was no racism, we wouldn’t have to be doing all this, right? So what I say is that our unique gifts and our unique identities can move the needle just a little bit and just enough. And when you get a wave like the one that we have now, ride it hard because it’s going to come back in the other direction and we need to do as much as we can to gain as much as we can in these moments.

DeRay Mckesson: Now the other question that we ask everybody is: what’s a piece of advice that you’ve gotten over the years that stuck with you?

Dr. Nwanyanwu: My mentor, Marcelo Nunez Smith, tells me, Bring your whole self. And it is really important for me because I am talking to people and in places and spaces that I never imagined that I would be in. And sometimes it’s very easy to shrink, but it’s important for those spaces to have the whole Kristen Harris Nwanyanwu in the building because the universe put me there to be me, and I’m doing a disservice if I don’t bring all of that there. And so when I feel a little uncomfortable or maybe a little anxious, I hear her telling me to bring my whole self, and whatever that means in the moment, to those places. And I’m so grateful for that.

DeRay Mckesson: Boom. Well, we consider you a friend of the pod and cannot wait to have you back. Thanks so much for coming today.

Dr. Nwanyanwu: I appreciate it. Thank you all so much.

DeRay Mckesson: Well, that’s it. Thanks so much for tuning into Pod Save the People this week. Tell your friends to check it out. Make sure to rate wherever you get your podcast, whether it’s Apple Podcasts or somewhere else. And we will see you next week. Pod Save the People is a production of Crooked Media. It’s produced by A.J. Moultrie and mixed by Veronica Simonetti, and executive produced by me. Special thanks to our weekly contributors Kaya Henderson, De’Ara Balenger and Myles Johnson.