Systemic Inequities in Population Health
Examining Social/Political Determinants Advancing Transplant Equity
Profound Conversations views racism not as an attribute of minority groups; rather, as an aspect of the social context and is linked with the differential power relations among racial and ethnic groups. Most studies of racism are based on African American samples; however, other populations may be at risk for manifestations of racism that differ from the African American experience. Asians, Hispanics, and, more recently, Arabs and Muslims are subject to similar inequitable opportunities in health and health care.
Show Topics and Highlights
Today, we will explore how structural, institutional interpersonal, and internalized racism influences racial disparities and health, and how they have been heightened by COVID-19 pandemic.
I appreciate that the author is telling us to step back and look at the entire picture of the person. When speaking about health, it's not just your blood pressure, and your cholesterol levels. It's the entirety of the person.
When we think about racism, actually interpersonal, for me, is the one that's probably the most common.
If we recognize that folks in positions of authority are not willing to make these changes, are not willing to do what we know they should, then we need to be brave enough to vote them out of office.
I can't just take anything for granted. Well, I'm a black woman, so every person in Baltimore who comes through the door should listen to me. It doesn't work that way.
How do you go about inspiring trust in the medical community?
I think at the end of the day, we are all human beings, right? We all have value. And the sooner that we recognize that and appreciate value in others, and are committed to doing the right things, because we inherently each have value.
We have to keep the conversation going.
Profound Conversations Executive Producers are the Muslim Life Planning Institute, a national community building organization whose mission is to establish pathways to lifelong learning and healthy communities at the local, national and global level. MLPN.life
The Profound Conversations podcast is produced by Erika Christie www.ErikaChristie.com
Full Transcript
Latifa Turner
Greetings, and welcome to another episode of Profound Conversations. I'm your conductor of conversations Latifa Muhammad Turner. I'm here for session three, episode three of Transforming Trust Factors, our topic, Systemic Inequalities in Population Health Examining Social Political Determinants Advancing Transplant equity. Today, we will explore how structural, institutional interpersonal, and internalized racism influences racial disparities and health, and how they have been heightened by COVID-19 pandemic, and uptick of motivated violence. Our guests are Dr. Tanjala Purnell now, the director of education and training and JohnsHopkins Center of Health Inequity. And Lesley Compagnone, who's also a member of the transplant community. Welcome to our show.
Leslie Compagnone
Thank you. It's great to be here.
Dr. Tanjala Purnell
Thank you so much.
Latifa Turner
So essentially, we'll tackle dismantling structural racism as a root cause of racial disparities of COVID-19 and transplantation. I want to start out with a quote, to just get this car started in the right mood to overcome the challenge of special interests that work against the conditions that create health, we need to extend the sphere of what we talk about when we talk about health, so that our conversation includes like factors like money, power, love, hate, culture, and the environment. And politics. Sandro Galio, from well, so when I read that quote to you, what immediately emerges for out to start out with you, Dr. Tanjala.
Dr. Tanjala Purnell
So I, you know, I'm thinking about this word hate, right. And for me, my initial reaction goes, you know, directly to the Reverend Dr. Martin Luther King, Jr, who talks about, you know, light being what is required to get rid of darkness, right, darkness cannot get rid of darkness. And so when I hear this quote, and think about hate and how hate is really a driving factor in many of the inequities, and many of the policies that lead to these structural factors, but how we have to think about how light is what is required. So, you know, Hate cannot drive out hate Darkness cannot drive out darkness. And so I really just think about the fact that we all have to really work together, we have to really recognize the value of each human being as just being valuable in our own rights. And really, just really recognizing and appreciating the strengths that we all have our own weaknesses, and, you know, really our role, and each of us our responsibility, and wanting to make this a better place and wanting to drive out these inequities. So, that sort of, I don't know, that just came to me real time.
Latifa Turner
We're living in real time and I really appreciate that because it just way you set it. Light is the only thing that really can dispel hate, it's clear you know, you can't it's not a tit for tat type of thing. Somebody has to be the bigger person in the room. Let's see what comes up. to you. And I said,
Leslie Compagnone
Well, I was introduced to that book. Well, I had never heard of it, from Samuel Shareef, who I absolutely admire and adore. So if he tells me to read something, I'm gonna read it. I haven't started it yet, but that quote it, I appreciate that the author is telling us to step back and look at the entire picture of the person. When speaking about health, it's not just your blood pressure, and your you know, cholesterol levels. It's the entire it's the love, it's the money, it's the environment, it's your relationships. I think that's just brilliant. I don't know, it's way ahead of its time when we talk about being holistic in the approach to a person, and every person deserves that, you know,
Latifa Turner
I know you talked about driving out the darkness with the light. But in a time when you're looking at the killing of arbory, awkward Ra, it's difficult to kind of get to that place where you think in equity equity terms, because there's so much inequity in so many positions. I mean, you look at that case, in particular, and you look at the posturing of the three whites that were charged with this, you look at they that they look so deeply in his background for, for issues, relevant to how much cannabis he might have in his system, to how he might be stereotypically a burglar, you know, so there's these these things that come up systemically, that kind of paint the picture and take you away from looking at it holistically. And I you know, Dr. ProNet, I want you to kind of come back on that just because you're talking about this light, but how do you hold the light and the depth of darkness when it is just so tempting to come back then that in that frame?
Dr. Tanjala Purnell
You know, that is a really important question. And in particular, because these days, we often see people who want to continue to promote this type of hatred. Often misquote Dr. King and often try to paint you know, his quotes as something passive as something to say, well, we should just sit back and not confront things that are not right. We should not call them out. And so you know, his daughter, Reverend Bernice King, who's a civil rights activist in her own right. I really appreciate how she often reminds us that true justice is not just the absence of conflict, right? So true justice is not just sitting around and not speaking the truth or not calling out darkness or not, you know, really rallying together to eliminate this. That's not what Dr. King was saying. Right? It was exactly what you said, in terms of our methods, we can't go around using hateful methods to combat the same evilness that we see. But that does not mean that we should not band together to get rid of it. That does not mean that we should not be working to change these policies to change these thoughts. You know, I just saw today that a young man's who was executed to die, you know, his his sentence was just changed today. And that was in large part due to protests about the death penalty, and the racial inequalities in terms of who often ends up on the death penalty, etc. And so, for me, when we think about how do we hold on to our life? To me, that really means how do we hold on to the hope that there is a better tomorrow? How do we hold on to the hope that there is something that we can do, these are things that we're here by design, laws, policies, rules, neighborhoods, structures, jobs, education inequalities, these were by design. And so that means that we are not confined to just accept things as if they should always be that same way. So for me holding on too late doesn't mean that I need to smile and nod my head and just be happy about things when they are evil, to me holding on to lightning, that I need to think about what's the most productive way to tackle these inequality? What's the most productive way to rally together what's the most productive way to raise awareness so that we all can really be thinking about this critically and rooting out this level of evilness. So that's sort of how I try to hang on to hope but you know, let's be real. There are some days when I am upset, there are some days when you know, I am angry about these things. I try not to what was the Scripture about not letting the sun go down? while you are still angry, but I am human. And I believe that we all are human and have natural reactions when we see things that are not right, that are not just but I don't think that it is productive for us to act upon our emotions, right? I think that we can do about it, and we can feel the way that we feel. But then we should think about what's the best way to move forward in the most productive way and really tackling these issues?
Latifa Turner
Well, you talk about structural racism. And my guess is that that would be to institutional or systemic racism. But this idea of interpersonal racism, how do you perpetuate that as an individual or collective? What do you mean by that?
Dr. Tanjala Purnell
So I think that, you know, when we think about racism, actually interpersonal, for me, is the one that's probably the most common, right. That's the, that's what we normally see on TV when we're watching things like police brutality, when we're watching people be mistreated, based upon characteristics like their skin color, etc, or perceived socio economic status, right. So an interaction between two people within the context of healthcare, and access in you know, quality of care, we think about things, for example, the physician patient relationship, and assumptions that could be made about people based upon, you know, really, all of these stereotypes and excetera things bias, for example, we talked about implicit bias, but let's be real, we also have examples of explicit bias as well, when, for example, people living with sickle cell anemia, who are experiencing pain crises, and may be treated as if they are drug seeking, if they go to the ER, because they are in pain and happened to be a young black man, that is an example right of interpersonal racism. Or if a person who has organ failure, for example, Kidney Failure is not appropriately told about all of the different types of treatment, such as transplant, because there are assumptions that, oh, well, older black women wouldn't want a transplant, or an older black woman wouldn't have anyone who would be willing to donate because, quote, black people just don't donate anyway. So I'm not even going to waste my time really having this conversation we're going to gloss over. Right. So these are the types of things that we talk about when thinking about the interpersonal nature of racism was sort of going on in interactions?
Latifa Turner
Well, I think it's interesting that you say it that way, because I was reading about your work in dismantling structural racism. And you were talking about these overarching committees that kind of make a decision for folks to say, oh, this person wouldn't be the right fit for all these kinds of reasons. And I looked at that, and looking at the court case, that was recently happened that we brought up a robbery, where they threw out 11 of the 12 potential jurors that were black and only left one of them. So you know, this perpetuation of racism happens in structure, like you mentioned, where you're setting it up for the outcome to come about. So when I looked at your your paper, the word that stuck out for me is dismantling how do we be purposeful about dismantling? Of course, you can't do that unless you're aware, first and foremost, but you also have to have some level of influence. How do you as a person of color coming into a doctor's office? And there have been I mean, let's face it, doctors have been given this stature where they're above and beyond, almost could not questionable. I remember going into doctor myself, and I had looked up my information relevant to what I was coming for prior to coming. And he said to me, quite frank, stay away from Google, I'm your only source. And and although I understood that you can find anything on Google, I was very disempowering to be told that I'm your only source of information. And and that just never rubs me the right way. So how do you empower a family of people to come into these offices, especially with living donor kidney transplantation, and and stand up for themselves?
Dr. Tanjala Purnell
You know, that's, you brought up so many great examples of really the interaction between structural into personal racism, right? So for example, your example of the committee having the authority to make decisions about whether or not a person would make it through the process or is appropriate, or has the right social support and a lot of these decisions are subjective, right. And that's The interpersonal side, right? When we start to be able to make some of these decisions based upon our perceptions or our own biases, etc, the structural piece to this is the well, how did this come to be? Why is this the process in the first place? Why are there not standard criteria across all centers that say that we need objective measures to say whether or not a person is able to continue to move forward? Why is there really no real way of tracking why people, you know, sort of did not complete the process or sort of fell out? Or, you know, we're not sort of voted upon to move forward? Why don't we have some national way of tracking these things, that's the structural piece, right, the things that we allow as a society to continue, and then that sort of gives that interpersonal racism, the authority in a lot of ways to keep on perpetuating this harm. But in the the case of living donors, and just in the case of thinking about being a patient, or having family members who are patients, we have to really recognize and appreciate the fact that there are many of us who have had experiences that were not pleasant. We've had experiences, for example, where assumptions may have been made about us and your case, you know, someone's saying, I'm your only source, that is not okay, you know, ever, it really doesn't come across in a very welcoming way, or in a way that we know that we really want to promote joint decision making, right. And so that, in many ways, perpetuates this whole thing about mistrust, medical mistrust, etc. And, you know, I really try to help reframe even that medical mistress, to really tell people, what you're really describing is fear, fear, because I'm essentially being told, I don't really have a joint decision making, you know, process in place. And I'm just being told, this is what I'm supposed to do, or that is what I'm supposed to do. Bye, bye, folks I have never seen before. I've never seen you in my community, I don't know anything about you. And just because you have a particular title doesn't give you the ultimate authority on my life, right? As well as the same thing that we see with family members. And so sometimes one of the strategies, and I'll just be honest, I've had to speak up, you know, on behalf of family members who I felt like, for example, concerns were not taken seriously, or things of that nature. And it was not a pleasant feeling. It's not a pleasant feeling to already be concerned about the well being of a family member. But then on top of that, to have concerns about whether or not this person is being properly cared for, and having to continue to speak out just for what feels like basic care. And so I unfortunately, don't know what the answer will be in the immediate short term to get rid of those types of interactions. But what I do know is that it is so important for us, for example, to stand up for our loved ones to show up, you know, for those who, for example, may not be as likely to speak up when they feel like they are not being properly cared for or spoken to in a disrespectful way. You know, thinking about things like patient advocacy, and, you know, helping family members to understand all of the information that is often really dumped upon, for example, with living donation, many folks get a whole folder of very medical jargon and terms, etc. So to the extent that we each can just play a role in helping to mitigate some of that, I think right now is one of the things that we could definitely do.
Latifa Turner
I want to ask, Leslie, just from from what you've heard, I heard saw you take your mic off, and I'm sure you were compelled to speak to some parts of this. But I want to ask you speaking what do you think are some of the key underlying reasons that even advocacy doesn't work to change the outcome of the numbers eventually,
Leslie Compagnone
I I do want to say something about the Word interpersonal, and you guys were discussing it and what that means as far as access to care, access to information. You know, I've been working with Simulink Korean for a long time and sort of many avenues of of work. And along the way, we met a gentleman, African American man, probably in his early 50s that has been on dialysis has been waiting for a kidney for seven years at that point. And I, we started talking, you know, I was introduced as you know, working for an organ procurement organization, and I started asking him questions And it, I had this aha moment that he didn't even know enough of the information to know the questions to ask to get himself off dialysis and on the list. Right. So he wasn't even being given the information to make decisions for himself to transplant. And I wow. You know, and that was a huge aha moment. I'm sorry. I, unfortunately, I might have a little bit of a tough connection. So if I can move but but that was an aha moment for me. You know, I, I was aware of-
Latifa Turner
And did you believed that he didn't know because he wasn't assertive, or did you believe he didn't know? Because it's some checkpoint where he was supposed to be given an overall understanding of the process. There was a loophole somewhere. I think let's be thinking about that. I'm going to direct that question to Dr. Purnell.
Dr. Tanjala Purnell
I think you know, absolutely. That's often the case, right? When thinking back to, again, folks making assumptions about which patients will be interested in moving forward and which ones won't, and sometimes just glossing over the information very quickly, really, for that, you know, people understand so it looks like Leslie's back.
Latifa Turner
I hear I heard her voice, but I don't see. Okay, there she is. Did you want to just finish? Finish up your train of thought? Yeah.
Leslie Compagnone
My train of thought was so I, you know, I, I was aware, but I'm gonna be honest. And was I aware? To the extent No, there was it? You know, and Dr. Pranab when you said, it's up to friends, it's, it's up to build that community to be able to advocate for each other, I think, you know, and, and I like Dr. Patel, what you said, and you were talking about the phrase medical mistrust. And, and, and addressing that, and transplantation and organ donation is all part of the medical system, you know, so we are no different. And there are, there are real concerns based on legitimate fears. And that's the first step for people at organ procurement organizations to help to understand that this isn't just coming out of the blue, you know, we are part of the entire system. And more we recognize that and validate that and work to understand that I think we'll get we'll go forward a little more. But you know, that story, and I do believe that that gentleman recently got a transplant cream told me I think so a couple weeks ago that he did recently get a transplant. But that was so he was on dialysis for 10 years, before he was able to advocate for himself.
Latifa Turner
And what is the average time that someone would typically be on dialysis? And
Leslie Compagnone
yeah, three to five, seven, pushing it. So he was on the higher end, you know, a doctor now you probably know much better about that than I do. But that five to seven is, is around.
Dr. Tanjala Purnell
Yeah, in I mean, the fact that he was on dialysis for 18 years, at any point in time, he could have, you know, had sudden cardiac death, he could have become too sick to remain on the list, you know, is really, you know, really a shame. And it's really putting, you know, his life in jeopardy if that is something that he wanted to pursue, you know, having to wait that long. So I'm so so happy to hear that he actually received a chance. That's amazing.
Leslie Compagnone
You know, I want to kind of ask a question, and I think maybe Dr. Pranab can address this and something I've been working to try and understand. It's the difference between equity and equality. And and what that looks like it so
Dr. Tanjala Purnell
great. Yeah. I'm happy to do that. So equality is just giving everyone the same thing, regardless of me, right? So, for example, let's say, you know, people love to use that that picture of, of people being at different heights and trying to watch that baseball game, right? Oh, equity would have been, I'm just going to give all of you the exact same size ladder, regardless of the fact that some of you are taller than others. Some of you are so short, that even this size of the ladder, that helps one of you to have an even better view. You're not done even be helped because you're so short, that you're not really still not able to get there. Right. So equity doesn't really take into consideration that we have people starting at different levels. And because of you know, really a lot of the structural factors that we're talking about. Equity means that if if an Uber ride right is 50 bucks, and there are three people who are approaching and I hand out Out $10 in say, this is what I'm going to give you to go towards that $50 Uber ride, right, you may have shown up with $50. So that was just 10 extra dollars right? In Your Pocket, someone else may have shown up with $40. So that $10 helped that person to get it. But then someone may have shown up with $0. So what is that $10 gonna do for that person, if it costs $50, right? Equity, on the other hand, looks and says, Well, you already have $50. So you're good if the goal is really to make sure that all three people are able to get this right, which costs $50, right, you already have $50. So you're good, you're good to go, I don't need to give you $10, you have $40, I need to give you $10, so that you can ride on the right, you have $0. So I need to actually give you $50 If the goal is for you to be able to also ride in this car, right? So that's sort of what equity does equity sees where people are starting and looks at the need for each individual to get folks to the same baseline really. So is that think more people need to understand because people are using it interpersonally and throw it around. And I you know, and I've been because I read some of your work. And also I know that cartoon that you were talking about, and I you know, it's like, just if we could get that in? Because you know, dei is now being thrown around everywhere. And what I you know, I think it's so important that people understand the difference between that.
Latifa Turner
Absolutely, I appreciate you defining that forest, we I want to encourage listeners to ask questions in the chat for us to bring up later on in the conversation. And I am we do have a question in the chat that I think we're going to probably address as we come closer to the end of the program. But I want to encourage people to keep those questions coming. So we can sculpt some of the flow of the program as well. You know, in looking at the question, it was kind of it kind of does blend into what I was going to ask and what actual steps need to take place within the health care system for patients to be able to identify barriers and get past them.
Dr. Tanjala Purnell
So is this in regard to transplant in donation or just in general?
Latifa Turner
Um, I'm asking in regards to transplants right now. And we can draw some generalities probably from that even Yeah, well,
Dr. Tanjala Purnell
I just, you know, I just wanted to know, because I'm like, there's so many barriers. So let me make sure I'm at the right starting point. So from the system or the center perspective, I think that one thing, really in thinking about is this exact question and people are not starting it at the same place. Right? Some folks are starting at a place where you've already had access to all of this information, either, you know, you had your own personal connections, you may have been able to know, let me start asking my specialist for example, my nephrologist, my kidney specialist, let me ask yours before I even completely ended up on dialysis or ended up meeting it right? And or it could have been someone else making an assumption for you and going, Hey, you're willing to do you're probably are connected, you're probably gonna have an easy time finding a living donor. Let me tell you about these options like pre emptive. Right. So I think that centers need to really recognize the fact that we already have inequities coming from the start, right. So because Medicare does not cover things like primary care, or access to a nephrologist prior to people completely losing the kidney function, if they don't qualify based upon age, then many of those exams that people have to already have done or have to take in order to complete the evaluation process. So thinking about things like all of the different loopholes, right, where people can sort of fall through the cracks. Communication is one big barrier. They've been so many people who have just shared Well, I don't even know where I am in the process. I've been calling I can't get a call back, etc. Right? So in thinking about, are we well staffed, or we even do we even have enough people to really be there to help guide folks who may have more complicated issues going on who may need to get more tests done, etc. Right, then that we have the right people? Do we even have any folks who have any knowledge of the local community, right? It doesn't always have to be exactly a person of color, even though we know that that's important as well, but also So more importantly, a person who understands the culture of the local community. So here in Baltimore, someone who understands that there's a difference between East Baltimore and West Baltimore, or who understands the history of the community and the academic institutions here in the city, and why some people may be hesitant, or not hesitant, right. And so really thinking about someone who could help break down really complex information for folks. So often, we nod our heads, right? Even if we don't understand we nod our heads, we don't want to look like you know, we don't understand we just nod our heads. So now thinking about someone who could really, you know, be reassuring and even do things like for real, make sure that the person understood, these are the steps or this is the information or these are the differences in life expectancy, right? Or even things like oh, well, I'm doing fine on dialysis doesn't necessarily mean that you will continue to do fine, right? Because the body is just so unpredictable, on dialysis, that you could be doing fine today. And you can have a heart attack or stroke tomorrow, right. So someone who could really break down the urgency, and the importance of really seeking this treatment if you are eligible, as well, as someone who speaks the language and perhaps can help to recognize when people may have concerns about well, I don't want to ask my child to donate to me, unless you're able to explain to me that this will be a safe procedure for my child, or I don't want to donate my loved ones origins, unless you can assure me that their spiritual life after death will be okay. Right. So people who kind of understand what this means, and knows how to speak the language, I think these are the types of things that systems really need to think about, and need to understand that this isn't like optional anymore. It should have never been optional. But you know, we can't blame the community. If we haven't done the work to put in place the things that we have robust science and evidence and knowing that these things work to overcome these barriers. And we need to just commit the resources to doing it.
Leslie Compagnone
Yeah. And if I could, if I could jump in really quickly as what I think when you're talking about community, Dr. Purnell and you being a board member at the living Legacy Foundation in Baltimore, which is the organ procurement organization that serves the majority of Maryland. I'm my counterpart up there. Ayesha Johnson, it Community Outreach Manager, yeah, launched the decision project. Yeah,
Dr. Tanjala Purnell
That's my girl. Ayesha, Yeah. All right,
Leslie Compagnone
yeah. She's a gem. So she launched the decision project, which is a grassroots outreach, advocacy, education initiative around organ donation. But she did it the right way. She know she, you know, her and her team, and with leadership from the board, people like Dr. are now partnering up at Hopkins grassroots initiatives, and I love the decision project and the tagline 100 is the decision is yours. You own it, you know, we're just here to let you know, this is an option, these resources are available, this opportunity is available. And that model of outreach and laser focus to neighborhoods, laser folk, I mean, laser, like down to church blocks, one several national awards for innovation and stuff like that. So that's what I mean, I, we are so proud of her as a community. But a lot of people are taking that model and looking at that for their communities.
Latifa Turner
This sounds great. And I think what I'm hearing is great, if it's not purposeful, but when you talk about dismantling something with ill intention, how do you how do you fight that? Because when we talk about the transplant process, you're talking about a whole lot of other processes that people deal with, in fact, the whole idea that we have disproportionate medical conditions based on things like stress, relevant to our economics, relevant to our micro aggressions in the not amount of things that we have to deal with for quality of life. You know, where does it start? And how do you actually dismantle something that is purposely put in place to take away your ability to be free?
Dr. Tanjala Purnell
I like to, you know, if we can be real for a moment, right? Once we raise awareness, and if we recognize that folks in positions of authority, are not willing to make these changes are not willing to do what we know or who are just purposely inflicting harm, then we need to be brave enough to get rid of them. Folks write or at least call it out. And that's just the bottom line. And I think, again, no going back to Dr. King, he was not afraid to do that. Right. You know, we talked about being non violent, and etc. And you know, we are looking towards the light, but we call out the truth. I think that that also really goes a long way with the communities that we serve. If we see if they see that we are willing to put it all on the line, when we see that, you know, these are just not the right people in place. Sometimes it means voting people out of office, right? So many of these policies around access to care and reimbursement etc, they get voted on in Congress, let's be real, in some of these things get voted on at the state level, except when we think about Medicaid, right? Sometimes we have to rally together and get folks out of office. Sometimes we may be the people who need to hold those offices, I think, you know, back to my friend, Congresswoman Lauren Underwood. And that was exactly why she ran for her congressional seat to be the change. And she's, you know, introduced so many bills around maternal mortality for black women, and has, you know, really helped to champion an entirely new caucus that had never existed before, right? Sometimes what it means is that we have to go down and testify if there are things that are being considered right. So sometimes there may be bills or laws that others have introduced, and we may have a voice, we have to think about the fact that, you know, we work locally, we work within our own individual institutions. But also we as just residents of this country, thankfully have the power to also stay informed when there are other decisions and policies that are being introduced are considered. And I think that that's also the time when we think about these grassroots efforts, and really coming together, maybe that's coming together with our neighborhood associations, maybe that's coming together with our professional societies, right? Because we often write letters, really in support of or against certain things that are being proposed. So I think that really thinking about the complex nature of these different factors, and really being willing to wear multiple hats or being willing to figure out what is it that you do well, and doing a really great job at that, right, and helping others to identify what they do well, and being supportive in others, you know, maybe it's not your role to go out and push for political advocacy, maybe it's your role to go out and partner with churches. But then guess what both things are needed if we really want to tackle all of these different barriers that patients face. And so I think really just recognizing that
Latifa Turner
I heard this as asset based community economic development, right, where you assess what is the landscape of your strengths and guests, and you build coalitions around those things. But there must be specific arms and talk about bravery. There must be specific arms that are put in place to tackle issues, particularly those that you wouldn't readily be familiar with what arm for instance, would be the natural space that we need to create policy and or some type of oversight group for just dealing to kidney transplant issue.
Dr. Tanjala Purnell
So I'll answer that I think was was about to say something.
Leslie Compagnone
No, no, no, that's great. Good. Yeah.
Dr. Tanjala Purnell
I'll just be frank, CMS. CMS is a very important stakeholder here, right. CMS, you know, pays over $30 billion per year, just for the population of folks living with kidney failure when.
Leslie Compagnone
CMS is the Center for Medicaid and Medicare. Yes, sorry.
Dr. Tanjala Purnell
Yeah. So So Medicare and Medicaid, it falls under CMS, right? CMS, or the Centers for Medicare and Medicaid Services, falls under congressional authority. But the implementation of these laws a lot of times falls within the purview of CMS, and we can champion for things that need to change. For example, we should all be championing that transplant education should be readily available to everyone, not just when folks have kidney failure. And the provision of this education should not primarily only fall within the context of receiving dialysis care. That's ridiculous. I often use the metaphor of if I want a you know, Toyota, I wouldn't go to a Nissan dealership to ask them to tell me about all of the nuances right? of one of their really one of their competitors. Now they could tell me many things about it being a car, right, but why would I go to one one dealership asking for all of the nuances of another dealership he with the best intentions, they may not know all of the information that I need to make a decision. So with this life saving treatment, why are we waiting until people are the sickest that they've ever been in their whole lives. They're tired. Many folks are depressed. Many people are already overwhelmed now trying to just stay alive. And now you want to dump on them and say, well, here's a shot at going back to your old life. All you need to do is get through all of these steps, right? And stay alive and do everything else. Right? That's ridiculous. Let's let's let's be real, right? So one thing we need to we need to make our voices known, you know, CMS, we need oversight in referral patterns, we need to know which centers are actually making referrals to transplant centers. And if they're not making referrals for patients, why not? We need to know what is the standard going to be for transplant education across the board is something that should just be an easy to remember website, or you know, something on television, it's something readily available, that anyone should be able to have access to, at any point in time, we need to think about well, we need to hold folks accountable and X, why aren't people receiving just access to basic care. So primary care, for example, if people are having, you know, chronic illness, like chronic kidney disease, in the early stages, there are ways and strategies to either slow down the progression, or at least keep people from, you know, immediately crashing onto dialysis, etc. And if we tackle some of these issues around insurance coverage, and the rules around that, why should insurance be tied to where you work? These are things that we all, you know, can really think about, and really call out and just say, you know, it's not right, and we shouldn't do it. And then even at the transplant center level, we need to have some national metrics to know well, who started the process that each center? How many people make it through that process? Are there in equities? In terms of who makes it through? I can tell you the answer is yes. Why are people falling through the process? Is it because they're not getting callbacks? Is it because your committee decided that folks weren't able to move forward because of some subjective reason, right. So these are all things that I think that really, a CMS has a lot of regulatory authority. And if they say, this is the new rule, then changes are made, honestly. So yeah.
Latifa Turner
Well, I want to say, Doctor pronounce the president after your talk. I mean, honestly, what you're, I mean, you have the solutions. Why don't we have the people with the solutions in the position to make the decisions that this is? Because ultimately, you're costing quality of life you're costing, bad economy is bad economy. But all right, because we're spending too much time patching things up that could have been done in prevention. Right, those gifts can't be harnessed to people are thinking about basic needs and or ill pneus. So as a whole society, we lose. Right. Leslie, I see you shaking your head on this. Yeah, I know. The President I saw you.
Leslie Compagnone
But yes. Yeah, I mean, it's always so crass to tie it to money in a conversation about lives, but my God, how much the federal government spends on on dialysis for kidney patients? Like three, you probably know, 3% 5% of the overall like, Medicaid budget, it's absolutely insane, yet they won't. So money is not going to motivate them. You know? And that's a horrible thing to say, but they're here we are, you know,
Dr. Tanjala Purnell
it's, you know, it's ridiculous. Or even thinking about how patients, you know, for so long have had to worry about their Medicare coverage ending because they got to transplant right. So initially, it was to take for the rest of your life. Exactly. You have to take immunosuppressant drugs, which may average around eight to $10,000 per year. In addition to that, I'm pretty sure it's a good thing to have access to a doctor to make sure nothing else is going on. Right? And to say, well, you get to keep your Medicare coverage for as long as you receive dialysis. But if you get a transplant, initially it was, well, you only get to keep that coverage for one year. Right. So then, you know, folks did the work and just said this is ridiculous. Come on, right. And it was extended to three years. And then it was extended to the life of the organ of the kidney for people who would otherwise qualify for Medicare. Again, ridiculous and we're publishing the data showing that many people were losing the kidney around year five, etc. And we know that those who, because we don't collect. That's another thing, there's so many pieces of just basic information. Industry, right. And sometimes when we've tried to champion those changes, the pushback was, well, that's too much work. And, you know, it's, you know, there's just so many basic things that we just need to tackle. And I think if the average person knew just how disconnected so many of these things were, that we shut the hands and go, How could this be right? How could we be putting our lives you're trusting you with this, you know, with this stuff, but you know, people losing these valuable Oregon's at year five, in many cases, because they can no longer afford the drugs, right. And it's only recently that these laws finally may be changing, right after decades of introducing bills to change it. So you know, that's just one example of how just making a policy change could could really translate over to life or death, or even just, you know, losing valuable ordnance. Someone donated in Oregon, or a family donated that Oregon and you're letting it go. And then if the person ends up back on dialysis, the person is again eligible for Medicare coverage. So you're going to go back to covering a person on dialysis, but you would not just cover the basic needs of that person by providing coverage. Come on. So
Leslie Compagnone
drastically cheaper.
Latifa Turner
Stuff is counter intuitive, it reminds me of in our communities where they dig up the highway, you know, and then somebody else comes in, they lay down fiber optics, and then they dig it up again, because they have to do something else with another utility. Why isn't this being centrally controlled? And is it profitable to have this kind of process to be always involved in these patients lives and is cured? Not the desired outcome? I question. If this is something that could be easily fixed with policy, and now you can't even say economically, because economically we lose by this process. So it's not an economic thing. It's looking at the system enough, caring enough being intentional enough to have the outcome that you're seeking to have, right? And then why would I trust an or a group that I'm seeing these types of outcomes happen to family members and friends continually, you know, Uncle Bob goes in for some kind of treatment, and he doesn't come back because of complications due to neglect? Like, why would I continue to feed into that system? How do you build back trust with the community in this way?
Dr. Tanjala Purnell
And you know, Uncle Bob, may have not come back because Uncle Bob did not have access to go when he first had symptoms, right? Uncle Bob may have had to wait until he just couldn't tolerate it anymore. And by the time he finally was saying, sometimes it's gone too far. Right. So I think that the first step is really acknowledging and validating why people and why communities feel the way that they feel, not saying, oh, that's silly. That's ridiculous. That's whatever right? Now, it's not silly, if your only interaction with the organization or with the health system has been negative, right? If every image that comes to mind is negative, we have to actually be in that moment and say, I acknowledge that that's the way that you FEEL, and that's an okay thing to feel that way, right. And then we have to prove that we are worthy of people not feeling that way. Whether it's, you know, us as individuals, meaning that I may come to you, because I want you to do a particular thing, or achieve a particular outcome. But sometimes proving that I'm worthy of your trust may mean that even if you don't do the thing that I'm asking you to do, I'm still available to answer your questions. I'm still available, I'm still gonna be around, I'm still committed to your well being, to the best extent. And it may be that we get to plant a seed. And that may be the first positive interaction that that person has ever had with anyone in this role, right? Regardless of whether or not we get our intended outcome. I think that really demonstrating that we're committed for the long run, is really what is going to take we can't keep popping in and out of neighborhood people are not dumb. They're not right. And causes harm long term, and we only pop up because hey, I need an Oregon today what you got, oh, we only pop up because hey, I have a research study today.
Leslie Compagnone
National whatever month. Exactly.
Dr. Tanjala Purnell
Right. Or his campaign season, right? So now everybody's popping up in our church. Right? So the thing about it is if I know oh, well, you know that Latif Oh, yeah, she's always here. Yeah, you know, oh, yeah, yeah. So what's your what do you what do you think about this, this person is coming in saying, oh, we need to pursue this data that we don't know them. What do you what do you think about it, you know, that type of stuff, or even
Latifa Turner
a follow up on two things you said one was, culturally, people have to connect, and have a certain sense of empathy, right? For the person. Because I want to, I want to lift that skirt up. Because a lot of times we do interact with people that look like us, but are part of the same institutional vein of racism, they are just the connecting point, but they're carrying that same cultural tsunami of thought. So you're not getting away from the results, just by getting a face in front of you that resembles I think that's so important that's clear.
Dr. Tanjala Purnell
Right? Absolutely, you can't just, I can't just put a black woman in, or I can't just take for granted. Well, I'm a black woman. So every person in Baltimore, who comes through the door should listen to me, Oh, it doesn't work that way. Right. And, um, for example, if I don't know the culture, I haven't made any attempts to understand why people feel the way that they do. If I come in, you know, really acting, you know, because we haven't really talked about this intersectionality of being elite, you know, this elite is a rite of class, the intersection of not just race, but also social class, right. And so if people feel like I can't really connect with you, you don't know my my walk, you don't know anything about me, or this is something that is natural for you, everybody in your family signed up to be an organ donor. So you may not even understand why everybody in my family is hesitant to sign up. If that's all you've ever known, you've never even encountered the other side, right? I think it's really quite funny that this ended up being my field, I'm going to tell you the truth, this is probably the last thing I would have picked as being my field, right? In terms of thinking about. And I'll tell you, you know, I'll be transparent, that once I really decided that this was gonna sort of be my primary area of research. I remember calling and telling my mom that I feel conflicted. I don't want to be known as the organ donation lady, because it really felt a lot like the Grim Reaper or something, right, and my culture, even just talking about death and, and making plans for dying. To talk about that we're supposed to talk about faith, we're supposed to talk about the fact that we believe in a spiritual being that's gonna protect us, we're not supposed to be sitting here talking about in the event that I guy, this is what I want to happen, right. And so I just think it's so funny, that this ended up sort of being it's not just a family thing. It's a whole culture thing, right? I'm a native of the Mississippi Delta, where, you know, if you're talking about health disparities, that is the spot, right. So like, we saw an ambulance, we equated that to Oh, somebody is dead, or somebody is not coming back again, right? Or if you end up at the hospital, a lot of times it was you ended up in an ER situation, right? So Uncle Bob never came back. And they said it was because those doctors just did not treat him well. Right. Or Mr. Joe didn't come back because they said it was because he signed up to be an organ donor, and they let him die so that they can get his organs. Right. So whether it's true or not, if that's the only thing that you have, in your mind-
Leslie Compagnone
That's your context. Exactly. Right. I respect that. But yeah.
Dr. Tanjala Purnell
The fact that I know that, right, the fact that I understand it, from a personal standpoint, I think goes a long way. And how I even respond, if I hear that from others, I'm not going to tell you, Oh, you're ridiculous for saying this, or Oh, you're whatever. First of all, who am I to tell you? What's ridiculous for you to think or feel or, you know, based upon your lived experiences when I have not walked in your shoes? And so really, you know, I had to think about, well, how do you really inspire trust? How do you communicate with folks, even if sometimes, you know, for example, there will be some people who do not want to indicate on a driver's license or sign down a car that they are willing to donate, but they are willing to donate their organs. And what I've done is perhaps change the conversation to say, Well, would you consider talking to your family and the people who would be in a position of authority in the event that something that it that something happened to you, and you die so that that person will feel okay with making the decision because they already knew your wishes, right? I'm not gonna sit here and argue with you back and forth, about something that you feel so strongly about. But I may be able to get at the same outcome, but taking a different approach. Can I?
Leslie Compagnone
Can I just make a point really quickly about how that what Dr. Brunel just said, and how the state of Maryland and the Motor Vehicle Administration and the opio and Maryland recognized that that fear of having your heart on your license is a legitimate fear? And it was it and so it was stopping people from registering to be a donor.
Latifa Turner
So I understand I had won my my driver's license, and someone told me Listen, you have that on your driver's license, they're going to target you and you're going to get your organ.
Leslie Compagnone
auction.
Latifa Turner
So we have to take a closing remarks now. What would you like to leave us with? For us to remember and to push forward decision? Dr. Purnell.
Dr. Tanjala Purnell
Oh, me? Oh, sorry. Ithought you said, Leslie. My apologies. Yeah. Um, so closing remarks. I think at the end of the day, we are all human beings, right? We all have value. And the sooner that we recognize that and appreciate value in others, and are committed to doing the right things, because we inherently each have value, right? Not just because of what it gets us or because of some other, you know, personal game. And when we recognize that we each have a role to play to dismantle these inequities. I don't care what your occupation is, I don't care what walk of life, you you know, encounter, we each have a role. There's something that we can do. The real goal is what are we committed to doing? And then once we commit to doing something, making sure there are people coming behind us who are also committed because we've seen how easily we can lose different rights and different gains. If we take it for granted that it will always be here.
Latifa Turner
Lesley lovely in three seconds or less. We have to wrap up,
Leslie Compagnone
keep the conversation going stuff like this. It's stuff like this.
Latifa Turner
Okay, you heard it here. First, Profound Conversations and I'm your host Latif a turner, thank you.
