December 2, 2022

Podcast - Achieving Health Equity: One Bite at a Time

Diverse Perspectives on Genetic Testing and Kidney Disease: Part 3
The Eyes on Washington Podcast Series
Podcast - Achieving Health Equity: One Bite at a Time

Holland & Knight's Public Policy & Regulation Group is proud to partner with the Rare Disease Diversity Coalition (RDDC) for a three-part podcast series highlighting diverse perspectives on genetic testing and kidney disease. RDDC brings together health and diversity advocates, rare disease specialists and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. This series, co-hosted by Senior Policy Advisor Shawna Watley and Advocacy Relations Professional and RDCC Consultant Deanna Darlington, lifts up important voices from the field and educates listeners about the experiences of those living with rare diseases. Special thanks to Vertex Pharmaceuticals and Travere Therapeutics for their sponsorship and support of this podcast.

In this episode, our co-hosts are joined by Dr. Tralonda Triplett, Director of Operations for the Institute for Successful Leadership, and Pamela Price, Deputy Director for The Balm in Gilead. This conversation centers around health equity and its complexities. Health equity, as defined by the Center for Disease Control and Prevention (CDC), is when every person has the opportunity to attain his or her full potential when it comes to health, and no one is disadvantaged from achieving this potential because of social position or other socially determined circumstances. The group dives deep on this definition and explains why equitable healthcare is so important in communities worldwide. Dr. Triplett and Ms. Price each share how their organizations are working toward equity in healthcare, one bite at a time, and how improving health equity requires a collective effort across systems. They also offer specific insight on ways healthcare organizations can create and support equity in the community.

Listen to Part 1: Importance of Diversity in Clinical Trials and Genetic Testing

Listen to Part 2: Battling Cystinosis: Perspectives from a Doctor and a Patient Turned Advocate


Podcast Transcript:

Shawna Watley: Welcome everyone to the Holland & Knight's Public Policy and Regulatory Group podcast, Eyes on Washington, in partnership with the Rare Disease Diversity Coalition. This is the third podcast in a three-part series. Today's discussion will be about health equity. We would like to extend a special thank you to Vertex Pharmaceuticals and Travere Therapeutics for their sponsorship of this podcast. So joining us today is Deanna Darlington with the Rare Disease Diversity Coalition, Dr. Tralonda Triplett who is the Director of Operations for the Institute for Successful Leadership and Pamela D. Price, Deputy Director for The Balm in Gilead. I will get right into the first question. Deanna, can you share with us what RDDC is and the work you all do there?

Background on the Rare Disease Diversity Coalition

Deanna Darlington: Sure. Thank you so much for the kind introduction, Shawna. So RDDC, it's an amazing organization that is housed under Black Women's Health Imperative and the real start of our organization occurred when a group of multi-stakeholders reached out to our CEO and leader Linda Goler Blount, to really assess the issues from a disparity standpoint and the rare disease communities. With that came the birth of the Rare Disease Diversity Coalition, and I'm so proud to say that it's a multi-stakeholder organization, and our real goal and focus is to identify those disparities and challenges that impact the rare disease communities and then develop evidence-based solutions that will mitigate health disparities for rare disease patients. So it's an exciting organization, multi-stakeholder, and we work under the umbrella of five major work groups that were developed to identify challenges that the rare disease communities face, but in particular, those communities that are diverse. And we do this work under these five work groups, which are: delay in diagnosis, the patient and caregiver work group, the provider education work group, diversity in clinical trials and a policy work group. And through these work groups is where we really engage these multi stakeholders to identify the evidence-based solutions I referenced earlier.

Shawna Watley: Well, thank you for that and thank you for the work that you're doing in this space, it's so valuable and definitely needed. And so Dr. Triplett, we're so excited to have you with us today. Thank you for taking some time out. And I just wanted to talk to you about, could you please spend a few minutes explaining what is health equity and why it's so important?

What is Health Equity and Why is it so Important? 

Dr. Tralonda Triplett: Well, first of all, thank you so much for having me here on this wonderful platform. And, you know, to talk about health equity in a few minutes is sort of like moving a mountain in a couple of sentences. It is a very complex term and it really is a heavy lift. And so I will try. We will start at the beginning and we'll get there soon enough. When we start to think about the term equity, we think about qualities of being fair and being impartial and that's reasonable. That's reasonable. That's a great start. When we start to talk about health in equity and equity in health, that's when it gets the little bit muddy in the water. And so we'll start out with the Center for Disease Control and Prevention's definition. And that says: "when every person has the opportunity to attain his or her full potential when it comes to health, and no one is disadvantaged from achieving this potential because of social position or other socially determined circumstances." I'll let you think about that a minute. Because that's a very difficult and complex definition to even make sense of. And that's at a national level. And so what does that mean in real life, in real terms and real day to day appointments and goals and policies and program. When we start to talk about health and equity and we look at that definition, it's still a little bit difficult to understand. When we consider health equity as a process, first of all, it is not a light switch moment. It's not something that, okay, we're going to stand on this side of the street and now all of a sudden we're in health equity. It's not a light switch situation. It is a process. We have to consider a community level process where communities and their environments are considered. And we look at all of the factors that contribute to their health and well-being. What about education? What about access to nutritious foods? What about access to all of the factors that contribute to the health and well-being of communities of people? And that is when we start to approach the concept of health equity. So when we start to talk about poverty, violence, unsafe schools and unsafe living conditions, these are the things that impact and impair health equity and the process of approaching that for communities. Persistent data shows us disparities in health outcomes for nearly every chronic or infectious condition for several racial and ethnic communities. So health equity is a very simple term, but it has complex social, cultural and organizational and systemic implications. So the definition's got a lot of hands in it. It's a very simple term, though.

It's not something that, okay, we're going to stand on this side of the street and now all of a sudden we're in health equity. It's not a light switch situation. It is a process. We have to consider a community level process where communities and their environments are considered. And we look at all of the factors that contribute to their health and well-being.

Shawna Watley: Well, thank you so much for sharing that. As you were speaking, I was thinking, I think there's a little slogan or saying that says, you know, how do you eat an elephant? One bite at a time.

Dr. Tralonda Triplett: One bite at a time, I would concur one hundred percent. Health equity is something that you hear a lot about. And I think the thing that we have to do as communities and as people from numerous different audiences is we have to understand and decide that it might mean a whole lot of different things to a lot of different people. And so that we have to make sure that we're speaking the same language, as best we can. But understand, it's not one person's decision to make what health equity is, nor is it a light switch moment. It's a process that we have to all contribute to in order for all of us to significantly benefit from.

One bite at a time... we have to make sure that we're speaking the same language, as best we can. But understand, it's not one person's decision to make what health equity is, nor is it a light switch moment. It's a process that we have to all contribute to in order for all of us to significantly benefit from.

The Balm in Gilead's Efforts to Further Health Equity

Shawna Watley: Well, thank you for that. And so Ms. Price, I would like to talk to you a little bit about your organization, The Balm in Gilead. I love the name, it's a biblical term, so it stood out to me immediately. So would love to hear about the work that you do and how your organization got started.

Pamela Price: Absolutely. Thank you so much for having me and allowing me to be a part of this conversation. I am already enjoying it and the energy and passion from Dr. Triplett is just astounding and is definitely setting the tone for this conversation that we are going to have. So I'm Pamela Price. I'm the Deputy Director of The Balm in Gilead working under our amazing and dynamic and visionary CEO and founder, Dr. Pernessa Seele, who actually founded the organization. We are in our 34th year. Our work is or has been, and continues to be, exclusively looking at harnessing the power of faith, spirituality, specifically in African-American communities, and doing that not only here in the U.S., but also working overseas in Dar es Salaam in Tanzania. And we've continued to do that work, continue to lay what Dr. Seele would refer to as the railroad tracks into these health equity, health disparities, conversations. And we know that, as you mentioned, The Balm in Gilead, it is a spiritual reference to a question posed is there no balm? And that was all about is there no, is there no solution? That's what the question was. Do we not have a solution? Do we not have the tools, the resources to be able in that context to heal the issues that was taking place? And we continue to have that mindset. What are the balms, if you will, that are needed and required for our communities? And Dr. Triplett just really illustrated it beautifully. The conversation is really not framed in health because health makes us stick to body. You know, what's happening in our body, the presence and or absence of disease. But when you couple that with equity, what you're really looking at is life. Life, livelihood, living. So are we living in equitable ways? Are we living in equitable communities, in an equitable society? And that's a challenge.

The conversation is really not framed in health because health makes us stick to body. You know, what's happening in our body, the presence and or absence of disease. But when you couple that with equity, what you're really looking at is life. Life, livelihood, living. So, are we living in equitable ways? Are we living in equitable communities, in an equitable society?

And for Black people in general who are, that's our primary audience, that's who we build, who we create for, with them in mind, with those in the rural areas who no one creates for them, they create and then bring it in. We want to create with them, realizing the resilience and resolve that they have, the untapped resources that exist, and how do we amplify those? And so we do those through a number of different ways from our program design to how we roll out implementation to provide adaptations for effective evidence based interventions that again, they're great, they're awesome. But if they are not reimagined for the communities who we want to use them and benefit from them, and impact, then they like a lot of materials that, you know, people have created, sit on shelves and go unused. So we're trying to really say, let's use this railroad track that our faith has traveled for centuries across the country, the gospel, the word and however it comes, in whatever religious background or ideology that it comes, it travels and reaches into communities and oftentimes in places that public health, academia, pharma, we're just not suited to get there. And so that's why we chose that vehicle, that mode of transportation, as you will, through this health equity conversation. And so, you know, again, just really honored to be here, to be a part of this conversation and to share kind of, you know, not only my personal, professional experience, but as an organization, what we're aiming and striving to do moving forward.

Supporting Health Equity Through Community Programs and Infrastructure

Shawna Watley: That's wonderful. And I really appreciate you making the connection in your organization, making a connection with the faith community. Historically, the African-American church, the Black church has been really the educational platform for African-Americans over the years as it relates to health. We just recently saw it during the pandemic, and it was the Black church who came out and said, we have to take the vaccine, and then others followed. And so it's so important that whether it's the Black church or any other major community stakeholder, that we're partnering with these organizations because those are the folks that people see every day, who they trust and who have, you know, kind of the ears on the ground on how to relate and communicate with these individuals. So thank you for the work that you all are doing. Can you give a little bit of an example of one of your programs?

Pamela Price: So one of our programs that, I'm not going to say I'm most proudest of, but it is a really illustrative and real world way in which we have created infrastructure because that's what's missing. This country, in its origins, did not and was not established with equity in mind. And so none of our systems today are created with, again, equity in mind, from health systems to education systems, our financial systems. That infrastructure is nonexistent. And so five years ago, in partnership with CDC, we created and launched what's now called our Southeast Diabetes Faith Initiative. So we are in six states all across the southeast. And what we did was invested in building an infrastructure that could address diabetes and more importantly, prevention of diabetes. We already know that we have more than enough African-Americans and minority communities who already have diabetes. This work is aimed at preventing more diabetes in these communities. So across these six states, we have state managers, we have state program coordinators. We have a cadre of lifestyle coaches that not only have we trained to deliver diabetes prevention programming and the Prevent T2 curriculum, which is a 12-month year-long lifestyle change program. But we also now have coaches who are trained in dementia work, to support our brain health center. We have coaches now that we have trained in mental health first aid so that they could also address some of the mental health challenges. And so now we're seeing, because we built something with people from the community, with churches who are opening up their spaces, they're allowing us to come in and not only fellowship with them, but exchange of information, exchange of ideas and exchange of resources. Our providers in these areas are also partnering with these local churches. So we have agreements established with health systems, with community based organizations, with fitness providers, with physician groups who are doing more screening, doing more testing and doing more referrals of individuals who really will benefit from this 12-month long lifestyle change program. And we are starting to see not only the impacts of people just successfully completing the program, but what is changing in their behaviors, what's changing in their mindset about how they are seeing and viewing their current health, their future health, the health of this next generation coming up behind us. And that was all because we took the time to make those investments in people from the community. We were very specific and strategic. You know, we could have had people with 10,000 degrees. We chose people, plucked them from the community, have trained them, sent them to training, paid to have them get additional certifications and access to additional skill building that not only is beneficial to our program, but it's beneficial to them. It's beneficial to their families, it's beneficial to their community because now they have a skill set that maybe the next time another project comes up within the city or within the county or with the state, they have a skill set now that hopefully employers and individuals will start to see them as value and an asset. So it wasn't even just how it was going to benefit The Balm in Gilead, and how it was going to benefit the project. But we really tried to say, how are we going to invest in these communities long term so that when we move and pivot to the next funded project or to the next initiative, we've left strong roots in these communities that they can continue the programs and continue to thrive, but also be able to continue to give back into their communities. And so that is by far, I think one of the strongest programs that we've worked to build that, again, has a living, breathing, functioning infrastructure in our communities connected directly to faith.

We are starting to see not only the impacts of people just successfully completing the program, but what is changing in their behaviors, what's changing in their mindset about how they are seeing and viewing their current health, their future health, the health of this next generation coming up behind us. And that was all because we took the time to make those investments in people from the community. We were very specific and strategic.

How is Our Health Impacted by a Lack of Equity

Shawna Watley: That's great. Thanks so much for sharing that. And so, Dr. Triplett, I'd like to take a quick step back. So we've heard about an amazing program that's being executed in targeted states. Overall, but as a patient, so if we have, you know, laypersons listening to this podcast, how is our health impacted because of the lack of health equity?

Dr. Tralonda Triplett: Well, there are a couple of things that I want to not pass by what Ms. Price just talked about. And it has, and it ties to exactly the question that you just asked. The first thing is this when we talk about Black communities and I use that plural on purpose because Black communities are not monolithic. We are not all the same. Even within African-American communities there and diversities and heterogeneity within our communities. We and community-based organizations like The Balm in Gilead and numerous other community-based organizations do the work to figure out what kind of cultures exist within the communities to whom they have access to, to figure out how to address them. And that's why those community-based organizations and the programs that they put together work so well. It's not a broad brush approach, you know, those are the things that make those infrastructures work so well over and over and over and over again. That's the first thing. The second thing is this, with Black communities and populations across this country, we're not predisposed or biologically predisposed to have these kinds of chronic illnesses or infectious diseases. There is the thought process that suggests, well, since you are black, then. If, then. That is not true, that is untrue. So there are other issues that can contribute to the outcomes that we see. I don't want us to go forward thinking that because I am of a particular race or ethnicity, then I am predisposed therefore to these particular health outcomes. We have to get away from that thought process and I don't care whether you are an MD or a DM. Know that, before we leave this moment right here. There is that. Now, when we talk about inequities in healthcare, these are how these issues and these biases and stereotypes come into play with patients. It's just like when Deanna was speaking about rare disease and those issues are exactly what they say they are. They are rare. And so you don't hear about them very often. You know, that's why they are entitled Rare Disease, except to the people that have been diagnosed with these conditions. They know them backward and forward as somebody whose family member has been diagnosed, they know them backward and forward. As somebody who knows of somebody who has been diagnosed with a rare condition, they know these conditions backwards and forwards. And just like any other human response or any other human experience, there is nothing that travels faster than bad news. And so when you have an experience that you are at your most vulnerable point, when you are ill and you experience something that is not to your best interest, you experience something with a healthcare provider where you know you are not being treated equitably or fairly. What is the first thing you do? You tell somebody about. "Well, I went to the hospital and I sat there and waited 3 hours before I saw somebody." These are the things that we tell the people closest to us when we are most vulnerable. And this is the news that travels throughout our families, throughout our communities. And these are the generational and historical harms that our communities carry on and on and on and on. And I will say, as an epidemiologist, these are the harms that continue. And these group level harms are the ones that continue to undermine the trust in these systems. And we don't have to look that far. We can look at Black communities' response to the COVID-19 vaccine and realize we have got a tremendous work to do when it comes to reconnecting with healthcare systems because of the lack of equity and the bad experiences that didn't even need to happen to me personally. All I had to do was know somebody that had a bad experience. These harms, this exposure to harm does not have to happen to me directly in order for those harms to impact my influence and my level of trust with these systems. So when we look at inequities, when it comes to healthcare systems, we don't have to look so far. And that's what happens with group level risks when it comes to patients and communities at large.

These are the things that we tell the people closest to us when we are most vulnerable. And this is the news that travels throughout our families, throughout our communities. And these are the generational and historical harms that our communities carry on and on and on and on. And I will say, as an epidemiologist, these are the harms that continue. And these group level harms are the ones that continue to undermine the trust in these systems.

Systems Upholding Inequity

Shawna Watley: Thank you for sharing that. What are some of the things because I'm sure you've seen it all as you're talking to patients, community, stakeholders, you know, as we've already stated, like how do you eat an elephant, one bite at a time? What are some things that you are encouraging individuals that you know and work with in addressing or attacking and tearing down some of these barriers?

Dr. Tralonda Triplett: Well, the first thing is this. I recognize healthcare, education, public health, they're systems. Okay. So they're not one hit wonders. In order to address one system, you're going to impact the other. So addressing these is going to take a collaborative effort. We are going to have to engage one another and recognize that community systems, these systems, these sectors that we're talking about, whether it's business or education or banking, they are constructed by residents of that community, which means they influence that community and they are influenced by the same community. So that means we have to understand and stop. Just a minute. And say, wait just a minute now let us not get disconnected and act as if we don't need each other in this and recognize, for example, with healthcare, we need patients just like patients need us. Let us not forget that. Let us not forget that we are providing a service for someone. Let us recognize fully that, that means we have got to dissect this process here and recognize that quality of care is an issue. Now, as I've said before, you all know, I'm an epidemiologist, so the data gets to me every single time. But if we take the data, the data will tell you a story. If we take the time to collect it and analyze it and make it make sense. And so when we start to look at these systems and understand that they're all interconnected, if we're going to address one, we're going to address another, we might as well get collaborative about this and recognize that one impacts the other. We're not sitting in silos anymore. And so my approach would be that one bite at a time is going to take a whole lot of sandwich. It's going to take a whole lot of sandwich. And so this is not undoable. It's just going to take some time. It's going to take each of us just to decide, I'm going to do what I can. I'm going to do what I can. Everybody can't do everything, but everybody can do something.

When we start to look at these systems and understand that they're all interconnected, if we're going to address one, we're going to address another, we might as well get collaborative about this and recognize that one impacts the other. We're not sitting in silos anymore.

Shawna Watley: Amen. You know, as you were stating, you know, I am an epidemiologist, you know, it just was it just lifted my spirit, right. Like, okay, here's an amazing African-American woman who's an epidemiologist. And I know that, you know, that was a journey for you. That was not you know, it took some hard work and sacrifice to get you to where you are today to be able to say, I'm Dr. Tralonda Triplett, an epidemiologist. One of the things and I'm going to turn it over to our co-host. But one of the things, one of the small bites that we worked on together was trying to develop a piece of legislation, basically, that helps to create more hematologists to address the issue of sickle cell. Because if you don't have the doctors who are interested in working in communities of color where people who have sickle cell, a rare disease, reside, then we're never going to make the progress that we need to make. So one of the things that I'm proud of the work that we've done with Rare Disease is trying to ensure that we have more Dr. Tripletts, that we have more hematologists that can really address and care about the communities in which people of color live. So, Deanna, I'm going to turn it over to you so I know you have some questions to ask our participants, but thank you, Dr. Triplett, for the work that you're doing for your service and just being a voice for the voiceless.

Health Equity Contributing to Healthier Communities

Deanna Darlington: Thank you so much for that. And I just have to echo Shawna's comments and tell both of you ladies how honored I am to be a part of Rare Disease Diversity Coalition that provides this opportunity for me to engage with you all. It's just been a pleasure and an honor to be a part of this dialogue. So, as Shawna indicated, I'm just going to continue along. So, Dr. Triplett, I'm going to come back to you. And I'm curious, how does health equity contribute to healthier communities? We talked a little bit about it. And I know Ms. Price mentioned earlier some key examples of what she's done with The Balm of Gilead. But I'd like to understand from your perspective a little more, if you could dig a little bit deeper into this whole equity topic and focusing directly on various communities of color, which you so eloquently said we're not all the same. So I would love to get your insight into that.

Dr. Tralonda Triplett: Well, you know that that is a very interesting question. And thank you so much for asking it. When you start to talk about health, though, I personally believe that health is the cornerstone of our existence. You know, I think that if we've learned nothing from the COVID-19 pandemic, it's that health is in every interaction that we have. Health will tell you whether you're going to the grocery store or not, you know, which grocery store are you going to? For that matter, we learned that with this COVID-19 pandemic as if it was not always there. But, you know, so much has been uncovered with this COVID-19 pandemic, you know, and if that wasn't enough, then monkeypox came, and then this RSV, I mean, on and on and on, where health has been uncovered as the cornerstone of our existence. And so when we start to talk about equity in health and how it influences healthier communities, you know, everything from the way your community is structured, literally built environments like where the grass is as opposed to where the buildings are in your environment can influence how your health is promoted or not. One of the things that I am a strong proponent, I believe in prevention. I love for people never to get sick. If it was left up to me, people would never, ever, ever, ever get sick. I don't like people to sneeze. I don't want you to be sick, ever. And so my mantra, my you know, I champion efforts for people to never get sick. And so when I think about health equity and building healthier communities, it has everything to do with promoting faith, promoting people around each other. I'm a strong proponent of social connections and how it builds health for people. So it's not only your individual behaviors. That has its place, don't get me wrong, that has its place. You're going to have to eat better, you know, get some physical activity, you're going to have to go to sleep (hint, hint, hint, hint) you're going to have to get some rest. You know, you're going to have to do the individual pieces. Don't get me wrong. Social determinants of health. Ladies and gentlemen, we can go all day on that topic alone if you are not aware of social determinants of health and what that means, that is everything else other than the individual behaviors that you take yourself that contribute to your health and well-being. For example, if you do not smoke tobacco but your partner smokes tobacco, guess what? That is a risk for you for lung cancer. And you haven't smoked a cigarette yet. Manipulating those social determinants of health, environmental health issues: your air, your water, your food, your soils. So when we start to talk about equity and those different factors, like I said, built environment, your safety, do you feel safe in your own home? Equity in those different phases of your life, they all contribute as far as communities are concerned. That is what contributes to your health and well-being far beyond what you do individually. And as I've said before, when we talk about those social determinants of health, they impact your health and well-being, whether you're exposed to those issues directly or not.

When we start to talk about equity in health and how it influences healthier communities, you know, everything from the way your community is structured, literally built environments like where the grass is as opposed to where the buildings are in your environment can influence how your health is promoted or not.

Deanna Darlington: Thank you so much for that, Dr. Triplett. I greatly appreciate that response and couldn't concur more. And we're getting ready to sort of wrap up this dialogue. But before I ask my last question, I would be remiss if I didn't come back to Mrs. Price to better understand sort of what I'm going to ask her that same question, because I know she's provided some great examples of what The Balm in Gilead is doing in communities. So I'd be interested to get her take as well on how health equity contributes to healthier communities.

Pamela Price: First of all, I agree with everything that Dr. Triplett just really beautifully laid out for us. And even as she was speaking as an organization who works a lot in the faith community, it reminds me of something we often tell our communities and even what we tell healthcare and public health is that all of us are fleshly beings, fleshly bodies, and we are having this earthly physical experience. Well, equity is what determines the quality of that experience. Right. So if I am and to the point, whether it's with smoking, how are we looking at perhaps why those, what are the dynamics within that relationship? Same thing, we talk about a lot around infectious diseases and even in the HIV and STD spaces, if we only focus on risk as having multiple partners or a partner who is unsafe, but we don't ask why that relationship continues to exist even once we've provided the education. So have we dug into is it a housing issue? Is it that I have to stay in this relationship that is a counter to my health, but I need to do it again to address some of those other social determinants that we just don't speak about in a holistic way. So for me, health equity or life equity as I like to try and get people to think about it is really looking at the individual level, what are the drivers individually for people? That's where culture comes in. So culture and social norms sets a lot of what is acceptable and or unacceptable. Our culture is where we're sharing those bad experiences when we have engaged with healthcare or research, and it did not go the way we expected it or the way that it should have went. We are sharing that and that is feeding and bleeding into our existing culture, our existing identities as a people, as a community. And that is where we often have the largest disconnect of making sure that as we look at health equity, typically across policies, across systems and across environments, as Dr. Triplett mentioned. But we have to thread a needle of the culture and the social norms because that dictates whether or not I'm engaging in policy discussions. It dictates whether or not I want to actually interact with a specific system, whether it's the healthcare system or the education system. And then once I start to interact my culture, I'm bringing it in here with me. And if I don't see my culture represented in some way, whether that's in seeing more people like me, seeing more black hematologists, more black epidemiologists, more black geneticists, more black tech people, conversations around AI and algorithms, well, the data is bad data if we're going to be talking about health equity, because the data is not representative of the people who are being disproportionately impacted by the poor quality of data that we're already using to make decisions. And so that's a huge, huge piece of, I think what's missing when we think about health equity and how it is going to impact, for better or for worse, the communities in the future. And so definitely breaking down the silos. And then again, how do we thread that needle between culture and the social norms that are going to dictate, again, the level and quality of the engagement and interactions of these communities across these different, again, environments and built systems.

We have to thread a needle of the culture and the social norms because that dictates whether or not I'm engaging in policy discussions. It dictates whether or not I want to actually interact with a specific system, whether it's the healthcare system or the education system. And then once I start to interact my culture, I'm bringing it in here with me.

Impact of Stress on Health

Deanna Darlington: You know, thank you so much for that response, Mrs. Price. I just want to add another layer and component. One component that I often see missing but I feel is huge, is that of the stress of being a person of color and just that within itself and then walking through that health journey. Can you talk a little bit about what that means as well as it pertains to equity?

Pamela Price: Absolutely. And there's limited study, but enough of it that we do know how stress impacts us physiologically. And I think that's where the research tends to stay. Is that stress, how is it impacting my brain and how my brain is functioning? What are stress and what it does to the linings of our blood vessels and things like that. I would challenge research to go further and do exactly what you said, the stress: first of all, what are my drivers? Because right now we tend to think that the bigger stresses or drivers are, lifestyle changes. Do I have a job? Do I not have a job? But we are under estimating or completely again, not considering what is the stress of me being a Black woman raising Black children in a society that right now as a parent, I may not feel they are safe in, that I am safe in. As a Black woman married to a Black man who's extremely outspoken and full of vigor and vitality, will that ever be mistaken outside of our home as something else. And would that put him in danger? Well, what systems do we have right now that are addressing that? And there are none, that are doing that. But we also don't have research who is really stepping up to the plate to say, let's shine a light on how the experience, the Black experience, if you will, or the Latina experience in certain communities and certain populations, the trans experience. So that's where we know culturally where we sit in these buckets. But by expression of my culture is that also now predisposing me to increased levels of stress, increased levels of anxiety. And that's where we don't have interventions being considered or we definitely don't have research dollars that are really looking to say, okay, how is this showing up in real life, in real people? And then I would do a step further is that we, let's just pick healthcare, for example, it's very transactional. Our healthcare doesn't happen outside of its buildings and its institutions. Well, life is happening there. So we need to bring healthcare to where life is happening. We need to bring education to where life is happening and allow individuals who have never had those experiences to really visually see up close in person, these are how what you see happening in D.C. or in Washington or what you see happening when somebody is gunned down over a senseless dice game. That reverberates in our communities. But the people who right now have the power in the decision making, they are not with us right now, as we are trying to amongst ourselves talk about how do we eliminate those external things that, to your point, you know, are really exacerbating our stress. That is not in my control.

Our healthcare doesn't happen outside of its buildings and its institutions. Well, life is happening there. So we need to bring healthcare to where life is happening. We need to bring education to where life is happening and allow individuals who have never had those experiences to really visually see up close in person.

Dr. Tralonda Triplett: You're absolutely right. And I'm so sorry, Deanna. But, you're absolutely correct. And one of the things that I want to and that I reference on the regular basis to just have to go beyond my own thought process when it comes is a couple of things that I want to just reference. First of all, the concept of weathering. You know, Dr. Arlene Geronimo out of the University of Michigan, I would say at least 20 to 30 years ago, created and coined the term of weathering, the weathering effect of just simply being a Black woman or Black person, a person that is not of whatever, not to sort of quantify the idea of not being anything but of being Black, being beige, brown, whatever. Okay. So that provides us sort of a starting point, if you will, to this discussion. So that's the first thing. The second thing is this: the day that President Biden was inaugurated as president of this country, he and I don't know if you've seen have you seen his executive order that talked about equity in this country? It's about four pages if you have not read it, I wrote down the number, I think it's like 14895, executive order. It is, and it identifies in an underserved population. If you have an organization, if you have a program, if you are just walking down the street and are unsure who underserved populations are, if you are providing a service for who so ever will, this is a wonderful reference for you to begin your assessment of how are you doing in communities at large? It includes rural communities. It includes Black and Latino communities. It includes transgender, that LBGTQIA+. It mentions them, in case in your immediate circle, these communities are not a part of who you see on a daily basis, because you can be in your circle and miss the boat. And at least this particular piece of legislation will at least provide you with a national tone setting piece to start the conversation. It also gives you a definition of what equity means if you are unsure as to what the term means. If this is something that you are unsure about. Google the executive order around equity and it'll give you a wonderful place to start the conversation and start your road on this on this wonderful process.

How Can Healthcare Organizations Create Equity in the Community

Deanna Darlington: Thank you so much for that. I greatly appreciate it. And I will Google, I know I've looked at it, but you put a new lens on it for me. So as much as I hate to ask the last question, I'm going to jump in. How can healthcare organizations create equity in the community?

Pamela Price: Specifically looking and thinking about healthcare organizations as I mentioned earlier, it's about how do we think about where healthcare currently is centered and housed and how do we place it where it should be and not only more accessible ways, but in more environments that are trusted in more places and spaces that individuals will feel comfortable and feel welcome. But even bigger than that, I think healthcare organizations have to move from this very transactional relationship with communities and make it really about the investments into the long term livelihoods, the generational livelihoods of these communities. We've got to change the ROI that healthcare systems, healthcare payers, healthcare providers, insurers are currently using to determine whether or not they will put an additional clinical practice somewhere. They're using that to determine whether or not they and then how individuals will pay, what sliding scales look like. Well, that typically is going to continue to put our communities at a disadvantage because that is not how they are choosing to make decisions. And so, again, moving from this transactional lens and really looking to say healthcare organizations should be looking to establish relationships with the communities and the individuals who they are serving. They've gotten the funding from the city to put their spaces there. They now need to look at how do we pay it forward and how do we look at investing in these communities that we are in, especially those healthcare organizations who are connected to federally qualified health centers, those who are affiliated with academic institutions like we have here in Richmond, we have VCU health system. And they have a huge medical school as well as a huge campus here. How are they making sure that both of those entities are being integrated, embedded? We don't have the level of integration from these organizations into the actual community. So that the same as they are seeing the pastor on Sunday who I put something in that pastor's hand, they're also seeing their cardiologists. They are also seeing their primary care physician and coming out and saying, oh, I didn't know we shopped at the same grocery store or to see them to come out and say, I didn't realize this was this bad and here's how we can help. So definitely, again, the healthcare organizations need to get less transactional, more relationship-focused, and more visible in our communities.

It's about how do we think about where healthcare currently is centered and housed and how do we place it where it should be and not only more accessible ways, but in more environments that are trusted in more places and spaces that individuals will feel comfortable and feel welcome. But even bigger than that, I think healthcare organizations have to move from this very transactional relationship with communities and make it really about the investments into the long-term livelihoods, the generational livelihoods of these communities.

Deanna Darlington: Thank you so much, Mrs. Price. Dr. Triplett, I'm going to pass off that last question to you again. Can you kind of share a little bit with me about how can healthcare organizations create equity in the community?

Dr. Tralonda Triplett: You know, I would not add any more to Mrs. Price's response. You know, I don't know how she saw my notes here, but I said translation, understand that trust is not a translation pawn. Understand that. You are a service provider to the communities at large. But trust is not translational. Communities will begin to trust you when they are good and ready. Not a moment sooner. You're going to have to get much more creative about the relationships and the visibility in the communities that you serve. Health is a cornerstone of existence. Get creative about where you're located and where you're telling the tale about health and how it can inform and improve your quality of life every single day. That is all I would add.

But trust is not translational. Communities will begin to trust you when they are good and ready. Not a moment sooner.

Deanna Darlington: Well, I love what you added. Thank you so much. Thank you all for this. What a lovely discussion. I really would like to tell our listeners and our audience that I hope you all will engage with the Rare Disease Diversity Coalition in the future. You can find us on social media platforms. Our website is RareDiseaseDiversity.org. And again, we'd like to thank our sponsors of this informational event. Vertex Pharmaceuticals and Travere Therapeutics. And we really appreciate their support of bringing this important dialog to a broader platform and to a broader audience.

Shawna Watley: Thanks so much. And thank you, Ms. Price and Dr. Triplett, this has been a dynamic and robust discussion, and I look forward to hopefully having an opportunity to work with you all again in this space. Health equity is something that I'm personally passionate about and I'm excited that Holland & Knight is willing to use our platform to raise voices like yourselves who are doing the work in the communities each and every day. So thank you for your service, and thank you for being with us today.

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