And I am the director of B2B brand marketing at USA Today, and I'm honored to open today's summit. Three years ago, this summit was a commitment to health equity, to make sure that it's not just a footnote, but a national conversation in the headline. And today, three years later, this commitment is still very much alive with everyone in this room, from leaders, advocates, clinicians, community voices. It's thanks to all of you to keep this conversation stronger and deeper. I'm very excited to-- for today's summit, and, and panels, and conversations, and I look forward to meet everyone.

And I want to extend our warmest welcome, for everyone to spend the day and your time here to be at USA Today. Thank you so much. Thank you, Jenny. Thank you so much. Black Doctor is grateful for our long-standing partnership with USA Today. We appreciate you, Jenny, USA Today, and Sherri Begelman, our Director of Policy and Advocacy, and our first-class AV production team who's helping us today with this annual convening summit. Welcome to Generational Health: Blueprint for Longevity. Today, we have a live audience that's joining us for our live stream. They're joining us on all of our platforms, and we hope that they're taking part in joining us today for this very special event.

It's going to be an impactful and powerful day. My name is Kristen Vaughn. I'm the Chief Content Officer at Black Doctor. It's an honor to kick things off at this convening of healthcare leaders, clinicians, innovators, and patient advocates like yourselves, who are committed to improving health outcomes for Black people and Black communities, and everyone in the healthcare space.

At Black Doctor, our mission is to connect people with trusted health information, meaningful conversations, and the experts that are shaping the future of healthcare. We know that Black Americans make up thirteen percent of the population, yet most of the health guidance, research, and clinical trials don't reflect the diseases, how the diseases and the conditions affect our population. They also don't reflect how the diseases and conditions present, progress, or how they respond to the treatments that are out there. We aim at Black Doctor to provide that guidance, to be that voice, to be that trusted institution that can put the information in front of the audience, take complex situations, and break it down in a way that it can not only be understood, but put into practice.

Today, with your support, we'll meet millions of consumers across the country with valuable health and wellness information, and we will engage a growing network of more than twenty thousand healthcare professionals who are driving change every single day. We're looking to help make that change across communities and across clinics, and from hospitals to research institutions, and into everyone's private homes, just like we've done for more than twenty years. Black Doctor prides itself on being the most trusted health and wellness platform. We don't take that lightly. Trust is so important to ensure the information that people receive is accurate, and we just made the most substantial investment in that trusted platform just last week, in fact.

And I hope by now all of you have had a chance to take a look at the new Black Doctor. What you've seen there is not only just a new look, a feel, but it's a commitment, a doubling down, if you will, on how we approach content for Black Americans, how we deliver the news, how we portray the outcomes and the conditions that face us, the health disparities and inequities, and to drive that home with some of the best technology that we can put behind it. It's our strategy, and it's our way of diving deeper for our audience.The audience that trusts us to provide news, data, studies, and more and to connect them with the lived experiences that they need.

Right now, the most important thing that we wanna do is drive that health diagnosis and help those outcomes to grow, because we know that when a patient is diagnosed, that it doesn't just affect that one patient, it affects them, their caregivers, and the community. And that brings us to our theme today, the third annual Black Doctor USA Today Summit, and we're gonna explore that theme of generational health, the blueprint for longevity, where you'll be inspired by conversations about breaking generational patterns, protecting ourselves and our legacy in cardiovascular care, understanding the role of phosphorus in kidney transplant readiness, and seeing the patient journey in a skin condition called HS.

We're also gonna explore a theme of patients over function led by col- a collective medical affairs team, and we'll end with a powerful oncology discussion.

Our goal is for you to leave here inspired, to leave here becoming more curious, and to start thinking and asking the questions about how you can enact change and develop actionable and impactful solutions. Speaking of impact, I'd like to welcome our keynote fireside made up of two leaders who are helping guide that important work forward. Please join me in welcoming Black Doctor President and Chief Operating Officer, Aki Garrett, whose leadership continues to expand how we connect millions of people to trusted healthcare information and meaningful conversations about wellness.

And joining him is Dr. Yele Aluko, cardiologist, healthcare executive, and passionate advocate for health outcomes through innovation, education, and equity. Please help me in welcoming them. Thank you. Thank you, Kristen. Good morning, everybody. Good morning. How you feeling? Good. It's a great crowd. Thank you all for coming. on behalf of Black Doctor, we are excited to be here. thank you to our partners at USA Today and all of our pharma partners, our community partners, and each and every one of you for attending today. So today, we're really here to talk about a system, right?

A system that, has perpetuated, or developed, inequalities that have really impacted, the community that we serve in terms of communities of color, and more specifically, the Black community. And we're here to explore this concept and this notion of generational health, and what does that really mean, how does that translate from generation to generation, and most importantly, what are the health outcomes and the impacts that we can drive by implementing a, a generational health framework that allows for better health outcomes.

So I am, on this panel and, here with Dr. Aluko, to explore this and to kick off the day for us, and, hopefully you all find our conversations throughout the day very insightful, and meaningful, as you all go back to your, corners of the world and continue to do this work. So good morning, Dr. Aluko. Good morning. How are you? I'm doing well. Good. Good. Good. So, can you walk us through and kinda tell us more about yourself, and what you've been focused on since leaving, Ernst & Young? And, and also give us a little bit more about your background and, what brought you to this work and, and so forth.

Thank you very much for this invitation, and, welcome to everybody. I wanna congratulate you and Black Doctor for the very important work that you do. I am a cardiologist. I practice cardiovascular medicine in Charlotte, North Carolina for twenty-five years up until about nine years ago. I, I ran a heart and vascular institute across a fourteen ho- hospital health system in the southeast USA as a medical director of the heart and vascular institute. I joined EY nine years ago, and this was just before, maybe a few years before COVID, and I was chief medical officer at EY.

I was also the inaugural founder, the founder of the Center f- EY Center for Health Equity, and the inaugural director for the Cen- of the Center for Health Equity. I retired from Ernst & Young in June last year with very deliberate intentions to focus on the more macroeconomic issues that drive the health industry, a focus on two audiences in particular.

One was a health consumer audience, all of us are health consumers, if not now, will be, as well as the health executive audience. trying to bridge the upstream connectivity with the downstream, downstream manifestations. I formed my own company now called Aluko Advisors, seeking to provide, insight and optimization across that spectrum. Fantastic. the work you've done is been tremendously important in terms of the clinical work. how's that translated, in some ways, if you don't quickly mind kind of giving me some ideas, how's that translated into the work that you're doing right now at Aluko Advisors?

it has prepared me for what I'm planning to do. Yeah. it has helped me understand the complexity of the health industry itself and the multiple sectors within it.And very importantly, the fragmentation of the industry, the lack of accountability of the industry, and the architecture itself, and to realize that the outcomes that we see today in coming out of the health industry are not accidental. They're a function of the fundamental design. Great. So let's move on a little bit and talk about generational health. And so when you hear the phrase generational health, what does that mean to you?

It's a good question. And let me start by saying that the term generational health is somewhat a recent context in popular discourse. Mm-hmm. Probably over the past five to six years. But the genesis of generational health actually dates back to around the nineteen eighties, and it was informed by what was then called the Barker hypothesis that demonstrated through research that human health is impacted by early life's exposures to certain, adverse or enabling social determinants.

This was mainly within a s- research context, but most recently, this is now becoming an important public conversation. it is driven by accumulation of health opportunity or health risk that permeates through one's life in a generation and is transmitted through successive generations. So it is the contemporary context of generational wealth. And as you well know, generational wealth, doesn't happen accidentally. Similarly, generational health is not an accidental construct, and it is very important and opportune that we are now beginning to understand that health risk doesn't begin when a diagnosis is made, that it is driven in the first twenty years of one's life by accumulation of health risk that may be driven by multiple structural forces, which we'll probably talk about.

Absolutely. No, that's, that is, a very helpful kind of articulation of what generational health means. When you talk about structural forces, what structural forces tend to compound across generations? What are you referring to when you say that? so I'm referring to structural forces which are broadly referred to as the political determinants of health, and the political determinants of health such as judicial orders, executive orders, state legislative orders. An example of which would be the acceptance of the Affordable Care Act or not. That local state decision impacts access to healthcare for millions of people.

So those are structural, examples, and those political decisions, determinants, result in the social determinants.

The social determinants manifest as where do you live? What access do you have to amenities that provide enablement of healthy decisions, such as access to education, good education, access to transportation that can get you to a farmer's market or a grocery store that sells healthy food. And the access to education is critical because it drives health literacy. and also what is not very well understood is environmental exposure. It's been published for at least fifty years that as a consequence of redlining, Black and brown communities tend to, over generations, live in environmentally toxic, more toxic areas than otherwise.

And these all result in compounded risk, such that at the time of diagnosis, a person who has this, these types of environmental exposures has more advanced disease at the time of diagnosis than would otherwise be the case. That is incredibly powerful. when you break down the structural forces, it makes me think back, one of the things you, you said was around the educational piece, right? And so when I think about access to education, access to information, I think that that is one place that Black Doctor really steps in, and we try to step to the forefront, which is democratizing this education, right?

Making it so that people can access content, information, and so forth in a digital fashion, such that no matter where they are, they can, they can have access to, to that information and learn about certain conditions, learn about certain environmental and, and societal stressors that then lead to these compounding factors that, that you just referenced.

So with that, how does generational health, or, or should I say, how does generational burden really become a biological reality? How does it manifest biologically?So generational, generational, exposure to health risk is what you're describing as generational burden. Yeah. Manifests in a, in different ways. Stress is one, and with chronic stress, you have an easier, more likely trajectory towards cardiometabolic disease, primarily hypertension. And with hypertension, all these secondary complications that might arise from that. In addition to poor eating habits, there's a thing about eating because of stress.

And if fundamentally your eating habits are not good, then there is an up There's a, a downstream impact of predisposing oneself for, for diabetes and cardiometabolic disease. So these manifest within the biology and physiology of a person that drives early onset of illness. You're all aware, I hope, that, that, overweight states in the Western world have reached pandemic proportions, particularly in people under the age of eighteen. Under the age of eighteen. And that is accelerating the onset of the typical cardiometabolic illnesses that one would ordinarily have seen in the sixties to now being seen in the mid-thirties to the forties.

So how do we address that? You know, we, we've got this notion of generational health. We have an understanding of what the burdens are, what the structural forces are. And kind of going off script here a little bit and kind of throwing you a little bit of a curve ball, how do we address that, as a community, right?

So this is a convening of not just, physicians. This is community This is a convening of the community, right? We have pharma stakeholders here. We have physicians. We have health equity advocates. we have community partners. can, can you articulate a couple of potential, you know, solutions or paths that we could, we could follow, to, to really start to bring this generational health concept, to fruition? So that's a very complex question, and I think it does start with the awareness. The awareness that we are living in the United States in the most complex health industry in the world.

We have the most advanced economy, the strongest military, and we have very sophisticated health system. But all Americans, not just Black and brown Americans, as healthcare consumers are at risk because this health system is actually, in my opinion, not a health industry, it is an illness industry. So we need to understand that these the cards are stacked against us as Americans because the system we live in is one that is designed to react to disease, to illness. And we have to remember that, that disease doesn't start with a diagnosis. By the time the diagnosis is made, risk has been built up.

So what do we need to do? We need to have that macrosystem awareness that the system is really not protecting you and providing you with health. That's number one. And number two, I would say that health literacy is key. It is an important driver of beginning solutioning, and this is driving down the responsibility to the individual.

When I mentioned that I was going to focus on two, two platforms, one would be the health consumer, it's for this reason. Nine percent of Americans, all Americans, are proficient in health literacy. Nine percent. And about two to four percent of African Americans are proficient. Now, that's the highest level of proficiency. there's, moderate prof-- There's proficiency, moderate proficiency, and low proficiency. But if you understand that two to four percent of African Americans and nine percent of Americans at large are not proficient in health literacy, it tells us that the whole context of population health does not exist, and making healthy choices is driven by health literacy.

If we compare generational health as a context to generational wealth, which is more evident to us today, and we have example. The, the, the prime example that comes to mind is the Walton family. And in the nineteen nine- nineties when Sam Walton, passed on, he had about a hundred billion dollars, but it started with one small store in Arkansas, and today it's worth about five hundred and twenty billion dollars. That didn't happen by accident. It happened by intention.With financial literacy and intentional investments. The parallel needs to be drawn for generational health.

We do have some examples of generational health in the world before we actually coined the term. Multiple studies have been done in the nineteen eighties to two thousands in Sweden that has shown about fifteen thousand people across multiple families have demonstrated longevity.

And there are some drivers that are common across those families. And we are likely to be familiar with the blue zones, cities in the world. I believe there are five blue zone cities where people live to, to their nineties and hundreds. Okinawa, Japan, Loma Linda in the United States, Ikaria in Greece, s- there's one in somewhere in South America, and another one I don't remember. But there are some commonalities. There is a prioritization on healthy habits, a prioritization on community connection, and habits that drive good health choices. So for us to begin to benefit and plan for generational health, in a similar manner, it needs it has to be done with intention.

First of all, the awareness, and secondly, the willing to invest in one's current health and transmit that, that down to successive generations. As a cardiologist, I've often heard, patients tell me that I have a family history of heart disease. I'll also say that I've been on TikTok for about four weeks, five weeks. Yeah. I have a TikTok page, and one of my messages on TikTok And again, this is part of my broader strategy to be able to reach potentially a global media about health education. and one of the things I said on TikTok was that patients have told me that they have, "I have a family history for heart disease.

My father died when he was fifty-five. I'm fifty-four. I'm scared." And my response was always that most of my patients who have heart disease don't actually have a family history of inherited conditions.

But what they may have is a family history of poor choices and bad habits, such as doctor's visits that just didn't take place, doctor's orders that weren't followed, healthy choices that were not developed, stress that was left ignored. Those are not genetically transferred. Those are habits that can be transferred by observation from one generation to the other that results in the accumulation of health risk. I, I think you just hit the nail on the head, which is this is a lot of this is, is learned, it's habit, right? I think there's a stat, something like eighty-five to ninety percent of disease is preventable.

and what happens is we develop habits, unhealthy eating habits and so forth, that then lead to these diseases taking place. And then we look back and say, "Well, my grandfather died of it, my grand you know, my father," so forth and so on. It's like, well, it's not exactly something that's inherited, but it's more about bad habits. we've got about two minutes left, and, don't want-- wanna make sure that we, give you a chance to, to, to say any parting words. But would love to kinda hear where you would like to see this, this movement go, and, and what you would like to see Black Doctor specifically, being a convener of all the various stakeholders, do, going forward, to promote generational health.

and then you can leave everybody with your, TikTok hashtag, TikTok at name so they can follow you. great question. So I've been fortunate in my career, and most of this wasn't planned, to be honest with you.

I have been at the bedside, and I've had physician executive leadership opportunities as well as health system leadership opportunities, and I've been exposed to big business and corporate America and large employers that drive, health budgets. And it has led me to understand that the, the-- we need to un to, to realize the macro systems that we live in. Once we do that, we also need to understand that we must make a decision as to what are we going to take forward within our own family units. disease is not Disease is not destiny. Disease is an output of our personal decision-making as well as the complexity of the industry within which we are exposed to.

So with Black Doctor, I'm very proud with the, with the increasing visibility, the increasing, enterprise approach to becoming a relevant health media organization. You are a convener, you are also dissem-- a disseminator of health information. But because this is a macro problem, you can't do it alone.And the problem you're trying to solve is an American problem, not just a Black problem. If you have a problem, if you can solve the Black problem, you're going to also be solving the American problem So those are my parting words that you need to engage with multiple stakeholders so that you can create a tsunami of opportunity.

Fantastic. Well, can everybody give a round of applause for Dr. Olokwu? Thank you very much. Thank you. Thank you. All right. Great job. So good. Thank you. Thank you. Good morning. All right. So that's one of our cameras right there, and then also that camera right there.

Okay. Thank you. And that's our, our timer as we get closer. Okay. And if you introduce yourselves with the first question. All right. And we've got the mic maybe here when it comes up too. All right. All right. Good morning. Good morning again. Okay, I'm just gonna start off and say that was really powerful. Am I right? Yes. Yeah. That was really powerful. Thank you so much. And we've all had a chance on that break, right, to follow, to follow Dr. Olokwu on, TikTok, right? All right. So this next panel with no delay, is a wonderful, as you can see, all-woman panel. And this is Women's History Month .

So yeah, let's give it up for our esteemed panel of ladies. Even though we're not going first, we are the first panel, so this is our ladies first panel. And, but you'll be seeing everyone throughout the day. so first, let's just say for decades, health outcomes have often been framed as a result of personal choices. Personal choices like we just heard about. Diet, exercise, compliance, and willpower. But generational patterns of disease, mistrust, delayed care, lack of intergenerational conversations, asking auntie, asking grandma, about our health and our shortened life expectancy do not emerge just from individual failure.

They emerge from a systematic failure, right? Today's con-conversation is about the state of Black health and a redesign of that failure. How do we intentionally build generational health? Well, we heard a little bit about that. It doesn't happen by accident.

I loved that takeaway that I got, I don't know about you, about generational wealth is not by accident, and neither is generational health. I mean, that's, that's on a T-shirt next. You know? You know, so how do we intentionally build generational health and so our present generation can get healthier and our next generation doesn't start from zero, right? Because we have to hand it down. So I'm gonna start off, and ladies, when you take your first question, please introduce yourself to the audience so we can hear all about you. And I'm gonna start here with Megan Wanzo first.

Megan, as a leader in global health equity, how do you see breaking the generational health pattern as a fun- as fundamentally a systems issue and not an individual one? Oh, thank you, Kristen. And good morning, everyone. I'm Megan Wanzo, I'm the Associate Director of Global Health Equity Inclusive Research at Bristol Myers Squibb. I started my career as a clinical bioethicist. So during the pandemic, I saw the disparities. I saw how big the gaps were, and I saw them getting wider. So I made the decision to go to industry so I could be a voice for those that did not have a voice.

So with this question, I think it's really important that when we're having these discussions, we're framing them because generational health patterns rarely emerge from individual decisions alone.They often emerge from a combination of the individual decisions, but also the conditions and the systems that have impacts over a generation.

When we think of some of the conditions like diabetes, heart disease, hypertension, and even some types of cancers, we see the accumulation of structural factors that really starts to impact not only someone over their lifetime, but also generations. Yes. Absolutely. I, I mean, I totally agree, and it and the numbers were just so startling. Mm-hmm. And when you hear things like only 2% of, Black Americans know, have health literacy, the, the amount of groundwork we have to make up is huge, right? Absolutely. So Dr. Lawson, you know a lot about that as the former NMA president.

Where do you see trust breaking down in the Black community, and what would it look like to build with intention before a crisis to help break these patterns? So good morning, everyone. I'm Dr. Yolanda Lawson. I'm an OBGYN by background. I'm a past president of the National Medical Association, and I'm currently an executive medical director with a health plan. And so when we talk about this breaking down, I personally don't feel like it exists, right? So I don't feel like we're in a trustworthy healthcare system. Speak, speak on that. As a, as a doctor- Yeah every day people come into the office, and even if I or their other doctor, their primary care, whomever, gives them instruction, they leave the office and they go do what?

They check with Dr. Google. They check with Dr. Google. Yes. Speak on it. They have had a face-to-face interaction- Yeah and they go check with Dr. Google. The second thing, I remember a few years ago I was listening to some of my family members, and, you know, I'm a doctor, so I'm thinking they know, they see me.

They're saying, "Oh, well, we don't go to those appointments. All they want is our co-pays." Oh, wow. What? Right? Second thing. So, right? Let me go check with Dr. Google. Let me d- let me not do what they say because they're seeking financial gain. They want me to come back for my co-pay. Wow. and then thirdly, what I hear often in my office- they're not listening to me. Dr. La They will leave their primary care doctor's office, come to my office, verify that this blood pressure medicine, this antidepressant is what I really need, Doctor. Because they, they trust me, right?

Mm-hmm. So when you talk about our care- Yeah central to that has to be trust. Wow. There is a lot of ground that we have to make up. Again, Black doctor in itself is because that was the trusted voice in the community, Black doctors. In your own family, they're going to Dr. Google. That's right. We're gonna have a lot of conversation I anticipate today that's gonna drive back- Mm-hmm to what Dr. Luco said around health literacy. Yeah. Or my neighbor said this one, this medicine didn't work for her, so I stopped taking it. You know that I'm clear. Sherita, as a leader in advocacy, how can industry partners and communities work together?

Because it sounds like from what Dr. Lawson's saying, it's, it's not a one-on-one type approach. This is really, it's gotta be a combination of people working together. What we, what could we do to work together and to partner the actions between the healthcare leaders, communities, and industry partners beginning today?

Yeah, I would say, first of all, Sherita Dorsey, I've had the privilege now of leading in multiple realms, starting off as a nurse practitioner, moving into, head of sales for different, organizations, and now advocacy. And I think that from, from the perspective of what Dr. Luco was saying, as well as, what Yolanda was saying, that it is so important that we understand that 80% of health outcomes are dependent upon what happens at the community level. And so what that means is that we have to put our resources at the local level where the decisions are made and where the abnormalities are taking place.

And I think that, from an industry perspective, we've been used to funding top down. The actual impact of what needs to happen and what we do moving forward has to be bottom up, and I think that that has to be the approach. And some of the things that we're really, really seeing and the impact that, that's really happening is when industry comes in and we collaborate in a way to where the patient, the community, and industry work together to close defined gaps that's happening in that particular community. I don't think that we're going to win looking at it from a national perspective.

We're gonna have to get dirty and grimy and figure it out together. But we should not be telling the community what they need. We have to show up early, we have to show up often, and we have to show up at the table in the boardrooms, and that's something that I really want us to drill into. If we're not at the table making the decisions, then we, it's not gonna happen.

The decisions are not gonna take place. And I think that's what we have to own, too. How do we lift as a, as we climb as a community so we're in the rooms making the decision? Wow. Sherita, that's powerful. Yeah. That's powerful. And what you're talking about also is flipping a model upside down. So when we talk about battling mistrust, now we're talking about changing the model. That's a lot of work we gotta do. I don't know, I've gotta bring you in, Dana. You're a public affairs leader in the industry. I mean, we're talking redesigning the industry here, moving it forward.

Sherita wants to redesign it. Dr. Lawson's saying we gotta practically rip it up and start over. I'm with her. How would you redesign it, Dana? Tell us, walk us through as a public affairs advocate, how would you do that and get us started? Well, well, thank you. And first of all, good morning to everyone. by way of introduction, my name is Dana Harvell. I am formerly the, vice president of International Public Affairs at AbbVie, and have recently, um-Taking my career to starting my own consulting business called Core Strategic Advisors. And, and the crux of my business came from what I experienced being in the pharmaceutical industry as a pharmaceutical professional.

Sitting on the international side of a pharmaceutical company gave me tremendous perspective to see how healthcare systems work all over the world. And, and then I come home, and as a, an American and as a Black woman, and I see the care that I receive, and I know better.

Mm-hmm. And it, it shakes me to my core to think about the challenges in our systems. And, and really it struck this desire in me to recognize that this is bigger than me, it's bigger than the pharmaceutical industry, it's bigger than your doctor. It takes all of us to really build the and create the changes to really create true generational health and wellness. And so that is my, my commitment, is how do we align and convene the right partners around the messages? And it starts with the patient, and they are at the center of it.

And so I very much agree with Sharita's comments on starting bottom up, and, and making sure that the dollars are landing in the right places and they're actually working within our communities and building the trust and breaking those generational barriers to create change, and then making sure that those stories are get being told, because we've got a reputational problem a- as a industry. And because of that, that mistrust continues to grow and swell, and I think that this is an opportunity for us to come together, because who doesn't want to live in good health? It's a health problem, it's a financial problem, and I think it's something that we need to come all together to solve.

So I s- commend Black doctors for bringing us together today to have this conversation. Wow, thank you so much. And, and I echo everything that you said. It flashes me back to, Dr. Oluko talking about the blue zones and the areas around the world, and I'm thinking, "Oh, great.

He's about to name some place that I know." I'm like, "Sweden?" Or you know, like, "What?" Like, is there anything a little closer to home? But not so much. and there's a reason why. We're making the wrong choices. And the mistrust, like you said, is there as well. This brings me to you, Dr. Nwanzo. When we talk about mistrust, we have to go back to one of the largest areas of mistrust, and that's around clinical trials. And that's an area where while the mistrust is there, the need to participate in clinical trials is so high. How do we go, knowing the history, we know what we're up against, the stigma, the mis everything that's there, how do we take the, the facts, the information about how vital being a part of these clinical trials is and get that information to the people that need to hear it?

Which is a lot of people in the Black community. It is. And that's a lot to unpack there. Yeah. So you all are gonna have to stay with me for a moment. Yeah. Break it down for us. So we talk a lot about the history of mistrust, right? Yeah. Henrietta Lacks, Tuskegee. We all know those stories. But I want to add something that's also real to those stories. The exclusion of the Black community in clinical trials for decades, for years, and even we see up into present day that there are certain inclusion and exclusion criteria that excludes the Black community. So now we have this opportunity where several of our companies, including mine at Bristol Myers Squibb, are making an effort to be more inclusive with our research practices.

We look and we see that when communities are underrepresented, the evidence does not match the population that needs these medications, that needs these treatments. So for a long time, we were seeing that the evidence-based science did not exist for our community. So when I talk about participation in research, we talk about inclusive research. It's not about optics, it's about evidence-based science, it's about reliability. But to be clear, and to touch on something that Sharita said, clinical research participation also comes with context. When we think about participating in clinical trials, if the first time you hear someone's company name or see them is at the point of recruitment, we're already too late.

We need to be building that engagement early. We need to be present at school fairs, at community events. We need to be on front porch- porches, barber shops, because that's where the community is. We have to come to them, and they don't have to feel like our clinical research is transactional, because it's not. We're trying to make sure that our care is stable, it's reliable, and that the standard of care is actually standard for us now. So when we think about that, the one thing that we can do is establish relationships with a primary care provider. That's where those trusted relationships begin.

It's where you can talk about clinical research. It's your regular appointments. But also, I just want everyone to be aware that there are local colleges and universities that have observational studies, that you can also familiarize yourself with research.

They're not treatment trials. They're clinical studies. They're studies, observational studies, that you can participate in, and they look at behavior, social lifestyle factors. And sometimes you can get compensated, too. So we should really open our worldview to start participating, start engaging, but we also have to do that on the sponsor side as well. So I just want to add to that. Yeah. I think amazing points. 75% of physicians are affiliated with health systems. So I do think there's an opportunity as it relates to trials for us to begin to start-Holding accountable as well the health systems as it relates to as we start to see trends that are happening throughout health systems, begin to start educating patients and bringing in and collaborating with, with partners before the clinical trials even start.

I think foundationally if we wait to create health literacy after clinical trials or right when clinical trials are beginning, the trust hasn't had a chance to build. So I would, I would just add, you know, 'cause it should be a takeaway as we leave here is what can I do when I leave here today? But I think that we have to begin to really, really as we lift where we climb, where we build, where we stand, all of those verbiages, I, I do think that from a clinical trial perspective, the trust has to happen early and often. But the health systems, I believe, are a key opportunity for us to work with the health systems in collaboration with the academic institutions, and community health worker programs.

If I can build on that. Yes, please. Uh- This is important. All of us gotta- Yeah, we are all, they're all ready. I was gonna say, I'm looking at Dr.- We're chalking out the bit here. I know you wanna join in. I'm gonna go to Dana first. Yeah. I, I think to, to that point on trust, I think that making the clinical trial process transactional is, is an opportunity that I think industry can really support patients with. It's not just about gathering your data. you know, it's not It shouldn't even end in the trial period, if you ask me. Why don't we follow up with those patients?

Why don't Can we share with them what we've learned? Can we support their personal health journeys? What are those incentives for patients that we, that we can offer that not only supports trust, I think, but also makes me feel like I'm a part of something bigger than myself? I just really wanna comment quickly. I just had an experience. I was just the PI on a, on this trial, and, one of my colleagues asked me, so this trial was only enrolling Black women and transgendered women, cis or transgender women, so you're really, like, really niche. And they asked me, you know, "Are you having problems with enrollment?" And I was like, "No, because they trust us." Right?

So we're in a community-based research center, and there's trust. And so as you talk about academic institutions and all of these things, if you do not have those clinical teams and researchers- Mm-hmm who look like the community- Yes for, I mean, NMA, we've been advocating for this a long time.

It is the biggest sh- game changer of all when we talk about enrollment, participation, right? Who can speak the language when you're consenting, and it is so important. And so I say that because me, myself, and the journey I had to get to become a PI, right? Fibroids. I'm a Black OBGYN in the South. Fibroids, I take care of them every lunch, breakfast, din- Fibroids all day. Every other- And I could not- I could not get selected as a site for the fibroid drugs. Yes. Right? It made absolutely They told me, "Oh, you don't have a full-time research nurse," when I have the population, and so I cannot advocate enough when we talk about workforce development and, and researchers of color.

Yes. Yes. So how do you get around that? I mean, when we're saying the future is clinical trials, getting participation is clinical trials, getting more Black physicians to be PIs in clinical trials, that all of these things come together, but you're expressing the barriers. You had the population. You had the skill set. What is the step that needs to happen as we talk about the state of Black health and what we can do? What has to happen for clinical trials to be operated by Black physicians as PIs and for the participants, the Black community, to be able to participate in these clinical trials and feel safe and trusted?

It goes back to what Sharita said earlier. It, it's not It's more than just sitting at the table. Right? There, there's a sitting at the table, but there's also when you talk about leadership.

yes, yes. And do you have the leadership at your biotech company, at your pharma? Do you have the leadership that finds this important? Because now that the FDA, right, we were moving towards this, the equity goals for all trials. That's been dismantled. And so but it still doesn't mean that people don't do the right thing. The problem is some people won't do the right thing unless they're forced- and made to do the right thing. I'm gonna come out my chair. Sit on the table. Oh. Yes. I'm just saying. Sorry. But go ahead. We're live. We're all off the script, buddy. We're live.

Really. Some things must be said. I'm gonna just move in better. Yeah, no. Some things must be said. But that's what this conference- Yeah, amen. It's women's history, so the sisters get to speak. It's ladies first. We're taking over. Go ahead, Sharita. Yes, please. Yeah, let me just add one thing. I think to Dr. Lawson's point, too, we shouldn't be counting on Black PIs to reach out to us as sponsors. We need to actively be seeking out Black PIs. Yes. We're actively going to sites. We're actively taking inventory to say, "Where are our patient populations at?" Because if we're putting trials where the patients are not, where if we have a multiple myeloma study or we have a sickle cell study and we're in an area where there's no Black patients, what are we doing?

Yes. So those are the things we also have to do in industry is be- make sure that we're seeking out the right leaders, the right patient population.

Can we get a amen on that? Amen. Amen. Amen. And yes One additive point, I think that we're focusing on the clinical trials when we need to be also focusing on the needs of the community first. And I say that from the perspective of we, we are in the community, we're in the hospitals, we're treating the patients if we're looking at the trends within our own academic institutions and saying, "We're seeing an increase..." 'Cause I can tell you right now, launching in the lupus space, launching in the, the renal space, launching into all these spaces, we knew in our community we had a kidney issue long time ago- Yeah before the drug companies even came around.

So I think it is also in But we knew we had a lupus problem before lupus treatments came around, right? And so when we began to look at clinical trials, I'm gonna spe-specifically focus on lupus right now, we did not have the representation of Black patients in our clinical trials early, within the clinical trials. But we knew we had that problem. So I think we need to be anticipating and saying what is needed in our community. What are the top three diseases that we see we have gaps in? And we should also be advocating if a trial doesn't exist, we need to make the case that it needs to.

And we need to be bringing that level of excellence and data to the table, to the organizations, to the industry to say, "What now are you doing?" It shouldn't be them coming to us all the time. It should also be us saying, "What are you going to do in this marketplace?" And I think- that that way we'll be front of mind, and we'll also establish ourselves as a subject matter expert, and they will have to come to us- to ask us what it is they should be doing before they even design the clinical trials in the first place.

So I think- Well, yeah those are the things that i- it's bottom up and not top down. Well, let me ask you this. Not to put you on the spot, but so we wanna bring it to people and say, "Start a clinical trial." Who are the people? Who do we bring it to in the industry? Well, we bring it to our own IRBs, to the institutions. We look at our data. We go to- Okay I can tell you the community health worker program, I live in Houston, so within Houston we have Prairie View, we have, we have U of H, we have Baylor, UT. We have all of these health institutions, per TSU. and so what I'm seeing happen, which I think is beautiful, you're beginning to get the data from the ERs.

You're getting the data from- from the health, from the community, and we're, they're working and putting together focus groups to begin to talk about what are the core, why, why is my community so sick? Why are we getting people from the refinery cities of Texas City that are now showing up- with cancer at MD Anderson? So they're having round tables with industry, with the academic institutions- Got it and really saying this, these are case needs, and they're bringing that and bringing industry- into their problems. Bringing them into the table. And then we're finding solutions.

Bringing them to the table. Great. Dana, before I move on, you said you wanted to make another point, so I'm gonna let you, let you have a moment and everything, 'cause I was gonna ask you already, what are the 1% actions? We're talking about, habits earlier.

I know 1% actions, it takes me back to Atomic Habits. I don't know if anybody else read that book. Absolutely. so when you talk about the 1% actions, related to it, what are those 1% actions, and tie that into your point. You know, we touched on some of them already this morning, and then I, I just, you know, can't stress health literacy enough. We need to educate people about their options, all of their options, and I, I think that is a big gap in, in wellness for the Black community. if you do not know the names or, or about your disease or the different opportunities are available to you, you don't know the right questions to ask your doctor- Mm-hmm.

Mm-hmm when you walk into the office. And so they give you, you know, the, what they think is easiest for you- Mm-hmm when maybe you are willing to take more a, a risk profile, because it fits with your lifestyle. So these are the conversations that need to happen, around shared decision-making, and you need to have that, that bravery as a, as a patient to go into the office and just talk, ask questions. So that's one piece. Mm-hmm. You need to understand what questions to ask, and I think we could do better as a, a community- As people. Yeah to really arm people with those questions.

And then three, it, it starts at home. And it really does start around the dinner table. And I think there's a lot of shame, around talking about your health- in the Black community- Yeah and, and talking about things like screenings and illnesses.

And, and we can take that stigma away at our dinner tables every night. Yeah. And those simple actions can build a, I think, a community, a family, and a framework that I think can have lasting impact. Exactly. I know I wanted to talk to you, Megan, about those patterns and pattern recognition when it comes to mistrust in the community. And Dana, you bring up something that, we talked about a lot on Black Doctor at the holidays in particular, having the conversations around that Thanksgiving table. Like, skip learning the TikTok dance. Do something that really- Yes means something at the holidays and find out what did, what did Auntie pass away from, Big Mama, whatever.

Like, don't just say she had the sugar. Like, what was it that she had, right? you know, and those are the kind of serious conversations though, where we know someone passed away, but we don't know of what. We don't go to our primary care doctor, and when they ask us to fill out the family history, and they say, "Do you have anyone in your family who died of breast cancer?" This one, and you don't know what the family lineage is. We skip it. Can't we do that at the family reunion? Can, can we do that at the family reunion? Skip the TikTok dance. Absolutely. What can we do at the family reunion?

Megan, tell me a little bit more about that and the patterns that are there along with it. Absolutely. So I think Dana makes a great point, right? Mm-hmm. Because often we do talk about our bad experiences. Yes, yes. And those often take precedence over talking about just the facts.

But when we talk about pattern recognition, it often is about those unfavorable experiences with the healthcare system. It's rooted in lived experience though, and we have to also acknowledge that. If your lived experience is with a system that didn't listen or believe your concerns, as so many Black women have experienced, or a system that bounced you around, and you didn't get answers, and you felt like no one was working with you, but they were working against you, we have to think about that. And when I was at the bedside, I sat with families who were making incredibly complex healthcare decisions, and what struck me wasn't the lack of effort on the individual level, it was the exhaustion.

The exhaustion of navigating a system that was never built with them in mind. And I think our Black communities have shown extreme resilience, but that should not be the business model of our healthcare system. We have to acknowledge the patterns, that they did exist, and then we have to start thinking about how do we redesign the system? And I think this is a point that all of us have made so beautifully already, is that all of us sitting in this room, we have extreme privilege. That's part of the reason why we're here. So when we go back out of this room, and not just to our jobs, not just our corporations, our organizations, but when we go back to our communities, we have to start that redesign together.

We have to reshape those patterns. Yeah. There's, there's a lot there. There is so much to unpack there, and you're absolutely right.

It starts with us, and that was a carryover from Dr. Aluko, too, as well. everything, the habits begin with us. The choices begin with us. And what we shape and what we show within our households as well. Dr. Lawson, can you speak on that? Sure. Frame it for me. Yeah. What you want me to say? Yeah. No, I'm just saying-- See, the, the personal, the personal responsibility I guess that go into shaping breaking these generational patterns. You know, when you see the, the family lineage, and you see it being carried on, you know that 10-year-old didn't buy that fast food or make those choices.

No, no, we're, we're quite clear. I mean, this is a constant day-to-day thing. We know that especially in this day and age, you know, I see a lot of adolescent girls, and, they don't really even eat what their mothers cook, right? They're ordering DoorDash, eating what they want 'cause we're struggling. You know, we're seeing such high rates of obesity, which leads to other things. It's body image, depression. So you see all of these things, and so but I think the big point here is to understand there's the interpersonal piece, and then there's the systemic piece, right?

So, you know, I'm dealing in both, right? From a systemic level, when you talk about Black American, s- there's been research that's shown, multiple research papers, the two most important things we can do to establish trust for Black America is making sure there's enough And I'll, I'll even expand beyond Black America. Okay.

I'm just gonna say minority populations- Mm-hmm is racially concordant or ethnically similar physicians. Okay. There's certain things culturally you don't have to, to skill up on, right? I get your Black hair and your Black skin. Mm-hmm. Right? And so there are certain things. We know that that's one of the most important things. Only 6% of doctors in this country are Black. I was just, just, just yesterday a woman told me, "Well, I wanna get me a doctor who graduated from Meharry." She lives in North Carolina. I said, "Ma'am, ma'am." "There are 6% of doctors in this country.

You could be looking for a doctor for a long time." "Just because you, 'I've just decided I'm gonna get me somebody that went to Meharry,' ma'am." So we have to understand that there is not enough of us to go around, number one. Yeah. But it's an important thing, so at every level, everyone here should be thinking about what these school loan caps mean, right? Across all the healthcare professions. Yes, yes. Dentists, doctors, we should be thinking about that. And then the second thing is bias training. So when we talk about the two things that could help establish trust, it's been bias training and ethnically diverse clinicians and healthcare workers.

I live in T- we live in Texas. Implicit bias training is illegal there. So when you think about the strides we were trying to make, and we have been making, and you look at And, and mind you, I don't even think it's now in this administration. For me, ever since the Supreme Court overturned affirm- and things have been unraveling, right?

And so we have to recognize that. And then do what you say you're gonna do. We still haven't gotten our 40 acres and a mule, so how do you expect me to trust you at the system level when you haven't done what you said you were going to do? And so all of these things I, I'm just speaking are just so, so, so important. So there's interpersonal pieces, and then there's systemics pieces. And my, my point is we can't just be here. We have to work both. We have to take this in a multifaceted approach. If I, if I can add to that. Sorry. Absolutely. Absolutely. I knew you would have something.

It, it's so important, right? So I l- Yeah I'm living in the city of Chicago, and there is- a horrible, horrible gap in life expectancy in the city of Chicago- from one side of the city to the other. So I live in the, in the Wicker Park. It's like west, west Galf- Garfield area. From that area to downtown Chicago, the life expectancy of the residents is something like 20 years difference. 20 years of And it's only maybe five miles, if that. Wow. So I don't think we can have this conversation without talking about access- Mm-hmm and systems at the same time. Yeah. Where are the hospitals?

Do they provide care? Are they trusted in their community? Are they active in their community? Because that's, that's absolutely ridiculous and, and that kind of healthcare disparity is something that we should all be angry about as, as citizens, not just Black people. Everyone should acce- have the access to, the same access, not just looking for the doctor from Meharry because you trust them.

You know? I should be able to find that doctor down the street at my hospital and- Yeah, absolutely let's ask why can't we? You should have that same access, right down the street. Five miles, life expectancy. You're absolutely right, that's a systemic problem. That's not something right there, that's just by accident. so Megan, I wanted to come to you a little bit and talk about when we talk about it's the bottom up, it's the, you know, flipping the model, that sort of thing, there's upstream and downstream investments that come into play here when we're looking at this from a public health perspective.

Tell me a little bit about what needs to happen from both of those directions to be able to make a difference, at least to start. Absolutely, and I think we've covered it, right? I think we've covered it on this panel. I think the fireside- chat covered it. When we talk about upstream and downstream in public health, we think of downstream a lot when we talk about health. We think about emergency rooms, we think about hospitals, we think about treating chronic conditions, but we need to think about that investment upstream across the patient continuum, across the lifetime of what does it mean to get screenings on time?

What does it mean to get preventative care? What does it mean to invest in communities and not expect anything in return? So I think when we think about upstream and downstream investments, they're both important, but we really have to start seeing that we're increasing our upstream investments to let communities know that we're here to support you holistically and throughout the patient ecosystem.

Interesting. No, absolutely. And one thing we didn't touch on, and I, I wanted to bring it up, when we hear so much about, we talk about Dr. Google, we talk about all of those things, you know, we always hear now about AI and AI in health, and everyone's talking and getting their answers now from ChatGPT. Sherita, how does AI play into healthcare? Yeah, I would- And, and if you could also add in your final thought as we wrap- up the session. All right. Well, thank you very much. So I would say AI, of course, is the, the hottest topic that you're, you're seeing right now, and I think that, very much so it fits.

It should be something that we're talking about, we're thinking about. Patients are using AI now to, it- it's replacing probably Google in some cases, Chat, with Chat. and so I think it's, it's quick, it's fast, it's easy. But I will tell you, NM- NAACP has done a fabulous job. If you have not seen it, they just put out a 75-page publication with industry around, removing health equity bias, with AI, and I think it's something we should all take a look at. But it's really highlighting the fact that AI has a role to play. It's going to be huge, as it relates to efficiencies, as it relates to identifying patient, looking through patient profiles and charts that are relevant for clinical trials.

it's going to be helpful for creating cul- culturally competent resources fairly quickly. I know where we're using it is looking at landscape assessments before trials even take place to really understand about the communities before we even show up.

so there's just a lot happening. I think the area that we have to continue to look at is garbage in, garbage out. If we don't have the data to feed the AGI, AI engine as it re- represent, to represent our- ourselves, we're going to have to put some added oversight as it relates to, looking at the formulation of, of really pulling out bias, in the system. one of the areas that I think we should also take a look at, too, that within the tech space, there, it on- in leadership, there's less than, four percent of representation, of African Americans in the tech industry as a whole.

So as we look at the industry of healthcare, we need to make sure that we're at the table, HCPs, nurse practitioners, 'cause I have to throw that in there, nurse practitioners, and the community in roles, in oversight committees that begin to work with the tech companies to begin to ensure that our data's in there. so I think those are some areas that we should take a look at as it relates to AI. Thank you. And I'm gonna go to Dr. Lawson to, to also wrap up with her last thought, but I know to, I know you wanna piggyback on that in terms of the racial bias. Well, yeah, yeah.

So certainly from the National Medical Association, one of my presidential platforms has been digital health equity, and so I'm thinking about it whether it's data, whether it's AI, or even these digital tools, right? There is so much coming at people, and then the data, the, the integrity of the data. Many companies now, they're using predictive modeling.

You don't even know itYou don't know it. When you get your drugs filled, when your insurance Everybody is using these models. They're using it to help people identify who should be going where, what they should be doing. But the-- And I'm con-so concerned. Bias is a huge issue for us. Almost every medical organization, AMA, everybody's on board with that. The systems, who's building these systems, and what that means. The data consumption around it, the integration with the EHRs, right? That data, they sell that data for people. Companies buy it. And so we've really It's a, it's a really big deal.

You know, my concern, again, is the health equity piece of that. Who's gonna get left out? So here we are talking about just health literacy. Who's gonna get left out? Now you gotta talk about digital health literacy, because what I see with my patients in the community, they're just blindly typing in stuff in the ChatGPT and getting back, like she said. ChatGPT can't see you, touch you, feel you. They ain't spoke to you. Your data's not in there. Your data's not in there, and so it's dangerous. And so it's highly concerning for us as doctors what people are doing to guide their decision-making processes.

I mean, some of it I find almost predatory. It's predatory, and certainly from a women's health perspective, women are extremely vulnerable, right? Now it's the menopause revo-revolution. It's the PCOS. It's all, and, you know, menstrual. People can't even, don't even know how to count a mens- without checking with ChatGPT.

So I'm highly concerned on what it's doing, but women are especially, especially vulnerable. Wow. Wow. Just wow. Yeah. Thank you. And we really are right at time, but I'm gonna let Dana go, and I'm gonna let Megan have the last word real quick. So Dana, just one last final thought before we wrap up. I don't know how you follow that, 'cause that's a warning. I know. That's a warning we all have to heed, really. We really do. Honestly, I mean, there's so much to unpack here, but I think my final thought is just reemphasas- reemphasizing shared decision-making. It, it is a community.

You, you, you need your doctor. You need your family. You need to think about the caregivers who are taking you to the doctor, how to support them, how to create flexible options for them, and if we can make those small actions, I think we can have huge impact. I love that. And Megan. All right. We're here to talk about breaking generational- We're here. -patterns, state of Black health. I'm gonna wrap this up. What's your takeaway? Yeah. One theme. So my one takeaway is this: We have to move from episodic care to lifetime partnership across the patient care continuum, because episodic care is rescue, and generational health requires infrastructure.

So when we leave here today, we have a job to go out to build that infrastructure. Thank you. Thank you. All right. I told you guys it was gonna be powerful. The ladies brought it with the ladies first. All right. Thank you, everybody. Where's our theme song?

Right. Someone cue Queen Latifah. "I Never Wanna..."Testing Well, good morning, everyone. Good morning, good morning. As we get ready for the next panel, we will ask everyone just to start taking their seats as well. I know everybody's talking and getting to meet everyone. Seeing people you haven't seen in a long time. Yep. Just like for everyone to start making their way and getting in their seats. We just wanna welcome everybody again to Generational Health. I'm Derrick Lane, chief marketing officer for Black Doctor, and we have Jade Curtis, executive editor of Black Doctor.

Yes. And we're here just in between to give you some connecting moments. We wanna connect the last panel to the, to the new panel. We wanna connect each other with everyone else in the room. We wanna connect ideas to action. So, but Jade, I just wanna- of course, go off-script just a little bit. Oh, Lord. Okay. it w- I would be remiss if I wouldn't just take time right now, after that last incredible panel, just take a look around the room. You'll see leaders, patient advocates, powerful people from pharma, everyone in between, doing the work. Despite what's going on around the world, people are continuing on and doing it.

So you've gotta give yourselves a round of applause this morning for being here. And not just a pity pat, either. Now. Yeah, absolutely. I mean, I w- I thought I was gonna hear some hooting and hollering. Yeah. You guys are showing up- Mm-hmm like you're supposed to. So yeah, give yourselves a real round of applause.

That's right. That's right. I know it's early. Yeah. And what did we think about those first two panels? Was that what you needed? Did it give what it need to give? Wonderful. So one of the things that really stuck out to me, from the first panel, the fireside chat, to the last one, was the need for health literacy. Yes. And so, Dr. A c- uh-oh, don't let me mess up. Aloku. Mm-hmm. Excuse me. Mm-hmm. Let me know if I'm wrong. Yep. Aluko. Aluko. I heard it, guys. You were there. You were in the neighborhood. It's, it's early. You were in the neighborhood. It's early. There we go.

but he mentioned that 9% of Americans are proficient in health literacy, but only 2% of Black Americans are effic- are, are proficient. That's a problem. And so that's why it's so important for us to show up. So that's why I'm telling you guys, you gotta give yourselves a round of applause, 'cause we are here to do the work. We are here to make sure that our community can be healthier, live longer, and not as sick as we have been historically. Derrick, what'd you think? Well, awesome. I think, one, before I begin, all of the people today, you're gonna see them on the panel, we're streaming live as well as on, on our platform.

So I would just admonish people at home, and even today, please look up the people that's on these panels. They are powerful, incredible, just doing things that we only hear about. But you see them here live today, so please look them up. Please write down their names. Share them with your, with your family and friends.

But one thing that I would say that I, that I I wrote down a few things, but one thing that stands out is, Dr. Wanzo. She was saying the need for clinical trials is evident. Clinical research is not transactional. It takes both sides. That's what I kept hearing. It takes both sides, pharma and patients, to start before the clinical trials, and it's about sharing and support in order to build trust. We all know that trust is important in everything that we do, but how do we build it? How do we keep it? That's what us at Black Doctor, we pride ourselves on. Trust takes time.

We've got over 20 years of building that trust with people, talking with them. Not just talking at them, but listening to what they have to say, and then making choices based upon that. So man, today, get ready. Buckle up your seat belt. Mm-hmm. I don't know if these people are ready today. I, it, I don't know. I, I don't think so. I don't know. I don't think so. That first round of applause had me a little nervous. Yes. I don't know. Yes. So in order to wake them up, let's have everybody stand. As they would say in church, rest on your feet. Uh-huh. Yes. Rest on your feet.

Now, there's a lot going on in the world today. Mm-hmm. Even right now, there are new, new headlines coming, and people are stressed- Mm-hmm as they were saying earlier today. So I want everybody right now just to go ahead, close your eyes. We talked about generational wealth this morning, and how it's a direct correlation to generational health.

Both of those things are intentionalSo as your eyes are closed today, imagine a new generational health for you and your family, for your community. Something that's thriving, something that's beautiful, something new on the horizon, and it starts today. You all are a part of it. You all are the change makers. You all are making it happen. Don't think that your part is small. Your part just being here is changing the next generation. So let's take a deep breath, breathe in, let out all the negativity that you came in here with. You were rushing, you were trying to get here.

"I need my coffee." Delayed flights. Delayed flights, all of that. Breathe that out. Ahhh. That's right, and you are breathing in the new energy of today. So go ahead, clap it up for the next panel- -which is From Science to Impact: Medical Affairs at a Turning Point. Let's welcome the next panel. Hello. How are we doing this morning? Good? Good. My name is Madeline Mitchell. I am a reporter here at USA Today. I cover women and caregiving. Thank you so much for coming to this panel. On this panel, we're gonna talk about the mismatch that we sometimes see between medical affairs and what patients really need.

And so the people up here, these experts, they've agreed that we're at a turning point right now in medical affairs. And so I wanna first start off by sort of level setting here with Dr. Small. Can you please explain to us what medical affairs really is? It's a term that sometimes gets thrown around, so can we define it, and maybe talk about the evolution that it's been on in ex- in these last few years?

Sure. And just show of hands, how many people really know medical affairs? I say that because even when I get hired to lead medical affairs, sometimes my bosses don't even know what medical affairs is. So medical affairs is probably one of the n-newest functions in pharma and biopharma, and, it was really brought into being around nineteen-nineties when biopharma became really heavily scrutinized. And I like to say that we are the nucleus of biopharma because we are made up of physicians who have treated patients, researchers who have researched these medicines in academia or in community centers, or even PharmDs that actually understand how to treat patients with these medicines.

And what we do, we really bring that external voice in. So we kinda shatter the divide between biopharma and the real external world, and there's a few ways that we do that. One of the ways is if you think about how we develop drugs and you look back when we first started developing drugs, a lot of it was based on patient product Sorry, product-centered development. And the way we're trying to flip it is making sure it's actually patient-centered development. So we bring the external voices in from understanding. We speak to patients. We s- we form patients councils. We have patient advocacy coming in and helping us from the very beginning, how do we develop these medicines?

The other thing is we work with clinicians with-- in during research to bring their voices in from the very beginning. We speak to regla- regulatory agencies to bring their voices in.

And what we're trying to do is not only that, but understand the true unmet need. Where is the care gap, and how do we make sure we're developing those medicines to address those specific care gaps, the true unmet need, not just a patient journey that you hear in terms of treatment, but what is the emotional journey? What is the family surrounding sound? What is that? And how do we develop the medicines that really address those needs and not just use our technology to get a launch approved? The other things we do is if you think about evidence generation, if from the very beginning, a lot of times we develop medicines that sometimes are more toxic than the disease itself.

And to me, how can you even call yourself a drug developer if you're bringing more challenges to a patient? So what we try to do is understand if there's a challenge with that drug, if it has safety signals from the very beginning, we start addressing it before it gets launched. We try to do supplementary research before it gets launched. If we are developing a medicine quickly, for example, in a huge indication like breast cancer, what if this drug can actually work in a different type of tumor or in a different type of disease? So we do something what we-- that we call signal seeking.

So we look at different signals and different indications. Can we develop this drug? And we do it really quickly, and we also do that with treaters. So we do this hand in glove with treaters. And then once we launch, it's not about just launching and going.

How do we understand the real world and h- its impact, our medicines, our impact on, on those patients? And the last piece Well, the other two pieces that we do is all the publications that you see, that's our team writing those publications and making sure that we are delivering true health literacy into the community. And the last piece to me, which is probably the most important piece, is access. So we talked about, I heard you guys talk about inclusive research, and I would love for us to get into that because to me that is so important. But we're the ones who make sure that our medicines, our research studies are actually inclusive, that they truly represent the population that has the disease, and they're going into the community.

And the other thing that most people don't realize is compassionate use. And how many of you guys know about compassionate use programs?So basically this gives patients access to medicines either outside of an indication or before the drug is approved if we believe it can have a life-changing effect. That is what we do. So overall, we make sure that we are developing the drugs in a way that I like to call patient-driven science, where the patients are driving our science, and our science and drugs are reaching the patients. Does that answer the question? Yeah. Thank you so much.

Yes. That's a great way to kick off our panel. Gives us a really great way to jump off into some other topics, including trust, which you just brought up so eloquently and, you know, I think this was brought up in the other two panels as well.

It's, it's really important to talk about. I wanna go over to you, Dr. Lezama, talking about trust and how this industry's really leaning into trusted voices. What does that mean and what does that look like in practice? Thank you. Great question, and, thank you everybody for being here allowing me to speak. So I'm Tony Lezama. I'm a medical director for Novartis Pharmaceuticals, in the cardiovascular division. And so when it comes to embracing that trust piece, in order to garner trust, people have to be able to relate to you, they have to be able to associate with you.

And so one of the easiest ways to do that is not to just show up in a suit and start talking about molecules, but actually understanding where these people are living, where they're staying, where they're playing, where they're praying. And so partnering with people within that community in those areas, in those arenas, to reach people and understand what do they actually need? What are they struggling with? What do they want? And what do they already know? And sometimes it's as simple as partnering with a pastor or partnering with a hairdresser, but we like to do some innovative things here and there as well.

And so, we've started to embrace trusted voices outside of the traditional pastor or hairdresser, but going into professional sports leagues. And so, we were just talking about this on the sideline. someone is more likely to trust Jalen Brunson than they are their primary care physician. Shout out to the Knicks.

But with that being said, there's a real opportunity there to embrace that, and maybe leveraging partnerships and collaborations with professional basketball, with professional football, because their players and their families suffer from many of these issues as well. Every October we know that the Giants, the Jets, and everyone else wearing pink, so you can have a three-hundred-pound lineman that is very scary-looking wearing pink cleats. Why is he doing that? Because oftentimes his mom had breast cancer or his sister, and so this is a easy way to raise awareness, but it's coming from someone that is not part of the machine, so to speak.

It's someone that they know, that the community knows, and that they can trust and relate to. So I think embracing those types of things just to get the awareness out about health and to have those conversations about health are very important, especially within our community, African American community. We don't really talk about health a lot. I mentioned or it was stated earlier that Thanksgiving we do the TikTok dances, but we never talk about why grandma died. We never talk about why Uncle Joe lost his leg. But we will talk about the TikTok dances. We will talk about, you know, the Housewives of Potomac, at least at my house.

but, you know, just it's important to actually speak on some of those other things as well, and leveraging those trusted voices within the community. So Reverend Smith, point guard, power forward, linebacker, quarterback, hairdresser, community health workers, tapping in and activating them.

I think that's really important for us to get the conversations going and to lay claim to our own health and be a master of our own health instead of just waiting for something bad to happen. Thank you. I'm seeing a lot of head nodding here. I think we've got a lot of people with you on that. Thank you. you know, and kinda continuing on this line talking about trust, and I talk about that all the time in my work as a reporter as well, and Dr. Dorfman, I'm sure you do as well as a media executive. And so I'm wondering if you can tell us how CMI is evolving its medical affairs division and what's next?

Okay. Hi, everybody. For those of you looking at the printout, I am not Eugene Lee. Eugene Lee actually is in Austin trying desperately to get out. So I am the stand-in. I hope I could do him justice. so I am Susan Dorfman. I am the CEO of CMI Media Group. I'm also a doctor of health administration. And before I share what's next, I'd actually like to start a little bit from the beginning. when I started working at CMI Media Group, our decision at that time with now our current chairman, because healthcare media fifteen, sixteen years ago was not sexy, it was very mission driven, and our decision was that our purpose was to create hope.

The first step in health is hope. Knowledge brings hope, and we bring knowledge. And the way that we chose to do that fifteen years ago when big data was not a thing was to actually do it with a precisely human approach. And not just precisely human by taking the voices of the advocates and the voices of the loud, by actually seeking the voices of the silent, because that's the majority.

I'm gonna get very emotional as I talk about this. And as we started to look at these, you know, at individuals across many different cultures, language barriers, so many different perspectives, and really started to want to do goodWhat we realized from the pharmaceutical industry who are partnering in this with us was we were always a nice to have when it came to people-based messaging and decision-making. We were always the first budget to get cut, and I will have to say that my first partners on the medical affairs side came from the company you did and we wanted to change that.

along with a few other pharmaceutical manufacturers who wanted to really drive change at a GL level, at a person level, to listen to the voices of the silent and really do right. years ago, right around COVID, we decided we were going to launch together an-- a, inclusive media center, which meant every voice had a voice and had the right I don't wanna say healthcare because we don't do health, we do sick care, had a right to hope and information and sick care. and we didn't launch it to be a revenue driver. We knew that that's not what it was going to be. We launched it to make sure that there are advocates, along with some of our pharmaceutical manufacturers to do the right thing.

what we also quickly realized through some of the data that we were gathering and bringing in was that after a twenty-minute doctor's visit or consult, when you get that diagnosis and you're left in the room, hopefully with a caregiver, sometimes by yourself, you have no idea what you just heard.

I just myself personally got diagnosed with something. The minute the doctor stopped-- started talking, I was in my own head. I was drifting. And you walk out of there, and you tend to wonder, what are we actually using ChatGPT for? What are we asking? What are we using search for? What is it that we're really trying to understand? And when you can do that, you'll actually see we're not looking for commercial brand messages and the sexy creative that's out there and, you know, a hundred reasons why you could die from taking a drug. We're looking for hope. and that hope, that scientific, that medical message, that clinical message, that understanding actually does not come from commercial.

It comes from medical affairs. I'm glad you said that. So for us, for us, what's next-- Sorry, I lost, For us, what's next is we've decided this year that we are going to launch a center, specifically a division, focused solely on medical affairs, because the way that you work on the commercial side with medical is very different. You have different measurement, you have different messaging, you have-- you know, y-you are the center. You are the center of what is needed out there. So that's our commitment, is to invest in that and bring that to the public. Thank you for talking about hope.

And I know that Dr. Small is itching to talk about hope and solutions in this space. You have a solution of your own, Doctors Unscripted. Can you talk about Doctors Unscripted and how those candid conversations are really pushing the needle forward here?

Sure. I can just stress one thing about-- 'cause I, I just kinda wanna tie back the trust issue, the inclusive research, because I believe trust is the beginning, and especially, I'm going off script, especially during this time where inclusive research is fragile, and we gotta know that. Because when you look at the data, if you are bringing these trials to, to communities, particular communities of color, if they receive it, guess what happens to enrollment? It goes up dramatically. So it's not just a trust issue because people tend to say the reason why people don't get en-- people of color don't get enrolled in clinical trials is because they don't trust physicians.

It is way before that. There is an infrastructure built that does not give access to communities of color to allow them to enroll in these trials. So I think that trust is really important, but we also have to raise our voices to say, "Where is the infrastructure? Where is the access? Where are the funds to allow us to do these trials in our community?" That's just a side note. Now, doctor I'm, I'm, I'm sorry. I'm compelled. Can I say something really quick? You bring up a fantastic point of one piece that's missing, and it's kind of come up, but it's really unfortunate.

One of the reasons why we don't see people that look like us in these clinical trials is not just a lack of trust. We're not asked. That's exactly it. Nobody asks us. Yes. And there's such I don't know what the word I want to use, but there, there's, there's a disconnect to where many physicians will look at someone that once you remove their skin complexion, on paper, they-- this is a clinical trial candidate.

Mm-hmm. But the second that they remove the, the blinders, and they see someone that looks like me or someone who looks like you, for whatever reason, in their mind, that's not a candidate to them. So it's really important that as we talk about these inclusive trials, we build in the infrastructure to not just support the people from the community, but the providers in that community as well. Empower them, help them to identify the right patients, but then get them involved within the research because you are spot on. If we are able to engage, and it's accepted and adopted, it's not that the enrollment goes up.

The enrollment goes in a way where you are faced with a great problem. You enrolled quickly. You enrolled, and now you're ahead of your timelines. So instead of we'll have enrollment completed by Q one of twenty twenty-eight, when is enrollment completed? Now.Yeah Like right now Yeah And so that can have dramatic business impact certainly, but certainly from a community impact as well, because now you're getting the drug out there potentially sooner, and you're getting more information out there to do another key aspect of medical affairs, and that's to help everyone, patient and provider, identify who is the right patient here, who should actually get treated, because treatments are not for everybody.

And so one of the ways to dispel the myths about trust is not just saying, "Here, take this." Let's really break it down and understand, is this right for you? Yep. Yep. That's all.

Thank you. No, thank you. I mean, that's why I think it's important for us to have those honest conversations because it's If we want to talk about inclusive research, we have to look at it systematically. We have to look at the criteria, exclusion/inclusion criteria. A lot of the times we are excluded. I mean, baseline, again, hematologist, to let you guys know, I'm a pediatric hematologist oncologist, right? And so when you look at numbers, our numbers, particularly in the Black community, our For example, our white blood cells are a lot lower. Polymorphisms, like we know this, but that sometimes kicks us out of a clinical trial.

If you look at testosterone levels for prostate cancers, our prostate levels-- I mean, our t-testosterone levels are higher. We may get kicked out of the trial. So even baseline needs to be changed. And then to your point, we need to make sure physicians are educated to, to include these patients instead of s-seeing them on a paper and say they're not included, right? So we need them to advocate, and then we need to also bring the research to the communities. So I'll go back to your question. so, t-to your point, I started a podcast called Doctors Unscripted, mainly because I mean, there's a few reasons, but if you look at information today, it is information overload, right?

What do you trust? Who do you trust? How do you just get through the data? And even as a physician and then as a patient, how do you understand what is true and what is not true?

And so my goal with Doctors Unscripted is really to democratize evidence-based science so that it's not just for the elite physicians that are doing the research, writing, writing these textbooks, but that everyone in the community has access to the same level of information. And that is what that is born of. And then the second piece is making sure that physicians' voices are truly heard despite all that noise, especially in an era where trust of science is being questioned, where true science is being questioned. How do we elevate the voices of these physicians so they can reach the communities directly and we remove, again, that glass and that separation?

and I can tell you, like even the voices I brought in, and of course, this is Colorectal Cancer Month, so I'm gonna mention this, but we've brought in And, and as you know, I mean, people of color, look at the numbers in terms of colorectal cancer, twice as likely to be diagnosed, twice as likely to die. We need to make sure that information is out. So I brought in a guest that has the largest amount of tissue samples, including samples of people of color, and he's done so much research. He's changed guidelines. He's written books. He has the largest amount of research out there.

He came in, and he told us one fact: colorectal cancer is the most preventable cancer in the world. He talked about when you look in communities of color, the research that he's seen, what is the nuance, what is the difference, and how do we prevent it?

I've had, again, Multiple Myeloma Month, African Americans, twice as likely to be diagnosed with multiple myeloma, and even worse, twice as likely to die from multiple myeloma. But what's interesting is when you give equivalent access to African Americans and our white counterparts, guess what happens? We survive even longer. So there is a real problem there in terms of understanding the genetics, understanding and, and making sure our patients get access. I had two doctors, a community doctor, a person of color, as well as a, academic doctor, and what they showed was we are now looking and understanding there is a difference in some of our genetics that show why I mean, what's the optimal treatment, and sometimes the treatments that we're receiving are not optimal for everyone.

So they talk about that, and then some of these data that we're putting out on this have not even gone public. And so even, like, how do we diagnose Alzheimer's? Again, many of us have family members that have Alzheimer's. They talk about the signs and symptoms before they even happen, and how do you prevent? So my goal with that was to make sure we remove the barrier, we remove the elitism from science, and we bring real science to real people. And I can give you an example, because I don't know how many of you have kids, but my kids, kids of a physician, kids of a research scientist, will tell me their diagnosis based on what they heard from TikTok.

So my daughter, I kid you not, I get calls sometimes.

She's like, "You know what? I know what I have." And I go, "Okay." She's like, "So I was listening." I was, I was like, she I was like, "You know, who did you speak to?" She said, "Well, I was on TikTok, and I heard this person who had exactly And they told me this is what it is, and I know it's what it is. And so I think I need to be treated this way." And not even saying, "Mom, let's talk about it." Or even my son, athlete, injured himself. St- You guys know Steph Curry. I found Steph Curry's doctor. Steph Curry's doctor. My son is seeing him, and he calls me, and he's like, "I think I have something else." And, and, and, and I was like, "You've been diagnosed." He's like, "No.

Well, I think I have such and such." I go, "Well, why?" He goes, "Well, when I was on ChatGPT, I read it." So my- Like the, the misinformation, I applaud them for trying to understand their stuff, but through TikTok, through influencers, through ChatGPT, and not understanding the nuance of diagnosis, the nuance of diseases. And, and that is what we're having exponentially.So how do we cut through the noise? How do we break through that and have these physicians, these scientists bring real science, bring back trust in terms of science to our communities? And so my next goal after this, I wanna do community screenings, bringing these physicians into the community.

Let's have this dialogue. There should be no separation. So that is why I started Doctors Unscripted. I'm excited about it. I hopefully you guys listen to it and give me your feedback, but that is the goal.

Let's democratize real science, real evidence for real people. So how many of you out here are parents that can relate to the TikTok and the Instagram? Yeah. And how many people here are caregivers in general? Maybe not parents, but are caring for a parent. Yeah. So I have a question based on what you were just talking about with TikTok. How do we cut through that noise? As a caregiver, as a parent and a caregiver, what advice do you have? And if, if you all have other answers as well, please chime in. How, how do we do that? How do we talk to our loved ones, especially our kids, and try to calm them down when they're diagnosing themselves?

Yeah, no, I That's a really good question. And I talked a little bit, I'm a hematologist oncologist, but I'm a pediatric hematologist oncologist, and I'm also a parent. And so the compassion that I have for caregivers, because even as, as a pedi-pediatric oncologist, you're not just treating that one patient in front of you. You are treat First of all, you're not just treating the disease, you're treating the person, and you're working with the family. It is a family caregiver approach. It's a community approach. And of course, when your loved one is diagnosed with something or has a symptom, it is scary.

Sometimes, dare I say, sometimes as scary as a person who's been diagnosed. And how do we get through all that noise? And that is again, why I started that, because we have to make sure that we encourage them to But we also have to make sure we arm them with true evidence-based information so that they know the right questions to ask.

They have the information in their hand. They can form this partnership with their physicians and together go through the treatment. And a lot of things on Doctors Unscripted really focuses on that. So I talked about the oncology piece, but there's-- we talk about, for example, Alzheimer's. And the scariest thing is having a loved one, you see their memory slipping, or sometimes you don't even know, but why are they acting a certain way? And so we talk about, like, little symptoms to recognize early and what, as a caregiver, you should be doing. How do we, how do we even start preventing the quick, worsening of the disease?

We talk about that. We talk about the questions you need to ask, the things you need to look for. And same thing with schizophrenia. We talk about, like, what are the initial symptoms that before they start hallucinating, what are the things you can pick up early as a caregiver? And this is a true story. A colleague of mine listened to one of the episodes, and she called me right away because she was telling me about her mom. And she said, "You know, my mom has been off a little bit, but I just didn't know what it was." She was telling me she spoke to my friend, and she did it, and it was these nuanced delusions that she did not know what it was, but she started noticing it.

But we talked about you could do blood tests to diagnose Alzheimer's now. And she didn't know that those symptoms of slight psychosis was associated with Alzheimer's, and sometimes that may be your first symptom.

So we went through what to do, and she automatically knew what to do. She ordered the blood test. She reached out to the physician, and her mom was diagnosed with Alzheimer's, but she was able to intervene earlier. So to me, it's making sure whatever we can do to get that information out to caregivers, not just the patients. See it as a community, making sure that we're talking about how can you recognize these symptoms? How do you not get penalized? How do you, how do you work together with the physician and your loved ones to know the right information, to treat them in the correct way, and make sure it's-- we take a holistic approach?

So that's my goal with Doctors Unscripted and the caregiver aspect. Thank you. Any other thoughts on caregiver advice? I can certainly add, from our perspective as a media agency responsible for creating awareness, I think one good thing that we do know is where these conversations are happening. And what we can do, whether thr- it's through the new term Geo, how many people know what that is? It's the, Gen AI version of search, and ways to be found. How can we start to be from a content and context perspective, how can we be in those places where these conversations are happening?

And how can we make sure that the right information is then heard and seen by the people that need it? The good news is, is they're happening. People are going, and they're seeking information. The bad news is you can't really control the information that they're getting.

My son is a doctor, and he still uses some of those sources. Don't be too school for cool. And what I mean by that is when you're a care provider or you're a caregiver and you're speaking to patients, most patients don't have that high level of health literacy. So giving them the Harvard lecture is not really gonna resonate with them. You really have to put it in plain language for them. And even from the materials that, we or other organizations put out, it's very critical to put it in a language that people understand. So if you have information that you're giving out about cancer one, two, three, whatever it may be-Make a Spanish version or if you are dealing with a community that has a lot of South Asians, put it in Hindi.

You know, put it in a language that folks understand, not just in their native tongue, but just plain language and something that is easy for them to digest. Make it one page, put some color into it, and make it really easy for them to process because they're going through a lot right now. Their emotions are all over the place, so if you give them a textbook and say, "Okay, let's talk about the biochemical pathways of the cancer that you have." I think the mechanism for PD ones is really cool, but I'm weird, and I'm not going through anything right now like that. The patients may not have that same lust for science that many of us do, so we need to put it in a language and a format that they just plainly understand.

Meet them where they are. And can I say that is the easiest thing for-- especially with AI.

I mean, we could translate anything like this, right? And, and to your point, we even have now what we're calling these layman or patient-centered publications that we are putting out. It is not that hard. It just takes this much effort to really, to your, to your point, meeting them where they are. Thinking about them, how they need to receive information to do-- to, to help their loved ones. I completely agree. And Dr. Lezama, or did you want to add something? Yeah. I just had one thing, and I think you reminded me, I don't know why I keep thinking you reminded me, maybe because you're from Novartis.

the words that we choose to use are incredibly important. When we launched Entresto at Novartis I mean, it is a really scary thing to call something heart failure. Mm-hmm. I mean, heart failure. How do you start that dialogue? So we started to think about what are the other terms for the caregivers and the patients that could be used that would be less scary, that would be more approachable. The same thing with obesity. It is such a negative term, such a negative connotation. So as we think about it, especially for medical affairs, when we talk to people, how do we use terms that allow them to do this as opposed to fist up?

Yeah. I agree. Dr. Lezama, I know that your expertise is in cardiovascular care. Can you talk about the gaps in cardiovascular care and how medical affairs can address those gaps? How, how much time do we have? So cardiovascular disease is still the number one killer in the United States and worldwide, and I see a lot of beautiful African American women here.

In this audience, I think it's really pertinent to understand the fact that sixty percent of Black women over the age of twenty-five have some form of cardiovascular disease. So I just told you three out of five over the age of twenty-five has it, and it's the number one killer. So this is no bueno, right? The problem that we have with cardiovascular disease is that it's not really talked about, and people are walking around not having the knowledge that they should. And I was guilty of that as well. And so when we think about cardiovascular disease, we think about the normal risk factors.

You mentioned obesity, but we think about high cholesterol. Everyone knows about high cholesterol. High blood pressure. But there are other things. Your triglycerides, LP little A. Elevated LP little A puts you at risk for cardiovascular disease. And so many people don't know what their numbers are, and I was that person. So I was working out, eating healthy, doing all the things, chasing after kids, coaching football, coaching basketball, talking about this stuff, and I didn't know my own numbers. And so the information, that is knowledge gap number one. It's really, really hard to address a problem if you don't even know that you have that problem.

And so everyone's dressed really, really nice. I can see people with certain pocketbooks and whatnot. And so the ladies out here that are pocketbook collectors, if I asked you how many different types of Louis Vuitton bags that you had, you could probably name them.

Do you know your- Do you know your blood pressure? Do you know your cholesterol? If I go to the barber shop right now, and I've done this, "When do the new Jordans come out, and which ones are coming out?" "Oh, these are coming out on Saturday." "Great. What is your LP little A level?" "What's LP little A?" y-y-y-- right? So we have to get that information out there, and that's a core tenet for medical affairs. Informing patients, informing providers that cardiovascular disease is addressable, but let's know the numbers so that we know that we can attack it and address it because all of these things can be managed.

They can be managed diet, exercise, medication if you so choose to, to take it. Knowing about your own family history. Family history was mentioned before. And so if we can get that information out there, and people can-- and I'm gonna give a plug for the panel coming up. Claim your numbers. Claim your health. It's critical that we can nip this in the bud in a big way. And so medical affairs has a huge role to play in that.

And so that's part of my day-to-day, constantly trying to get the information out, raise the awareness to get that information out, hence the partnerships with people that are really, really tall or really, really big, or people that speak from a pulpit or people that do hair because the way to address that problem, which is again, the number one killer, is not just by myself or just with you or you, it's with everybody working together and tapping into each other, having those partners to address this particular problem because most of the time it's not your fault.

You didn't know. You didn't know. So now you can go and claim it, know about it, and address it.I want to bring it back again to patient-centered care and moving towards patient-centered models of development in biopharma and medical affairs. If we could just go down the line, and maybe you could all give us an example of what that looks like in day-to-day work, so that we can all go home really having a good handle of what the future looks like in patient-centered care. I guess I'll go first. Yeah. Sure. So to your point, it's again going back to patient for me, patient-centered drug development, what I do.

And I-- One of the things I forgot to mention too is medical affairs, we don't promote, right? You will never see us promoting. That is not what we do. Our, our job is to really do patient-centered drug development to deliver patient-centered care. So if I can just I'll give two examples. One, we talk about clinical research and, and clinical trial inclusivity, and then the other piece I do wanna talk about is compassionate use because I, I think there's a piece there that we need to grab onto. So little bit about why I came into pharma, and if you've heard this story, if you ever heard me talk, I tell it because it just sat It's, it's the visceral pieces that made me cry to leave and, and do what I do.

I had a patient, I'll call her Baby S, and she came to my I used to work at NewYork-Presbyterian Columbia University, and she came, I became her physician, and she had these blueberry spots, and we ended up diagnosing her with AML.

And this baby was thriving, and let me tell you, we talk about caregivers. Her mom was on drugs before she came, before she had this baby, and the baby was a newborn coming to us. We watched this mom clean herself up. We watched this baby go from in our hand to pulling herself up on a crib and smiling and laughing and giggling and just thriving. She was up to her last treatment of, of chemotherapy, and I remember I was gone for the weekend. I came back, and my little munchkin was in the pediatric ICU with her last treatment. Now, let me tell you, her disease was gone, right?

It was the last thing to consolidate before she went home. The mom is telling me they already found a place. Homeless and on drugs, no longer on drugs, found a place to take her munchkin home. And I couldn't save her. I lost the baby that was supposed to live because of lack of tools in my pocket. I had no more tools to help her, and the drugs that we were giving her were too toxic, that her poor system got ridden with a fungal infection that she could not fight, and she died. And the mom who came in with a baby in her hand left empty-handed. And it was at that point, I remember I-- Like, you're going through it with the mom, and you're talking to her, and, and you're telling her, like, there's nothing you can give her that's comforting.

She has no baby anymore. And I remember going to the bathroom crying, and I said, "We have to create better tools for physicians so that they can ha-- deliver better care." And that's why you keep hearing me say if my drug is too toxic, then the disease itself, it's a problem.

So as we're thinking about patient-driven science or patient dr-- patient-centered drug development, it is about making sure that we're bringing all the voices together. We understand the disease, but more importantly, we're focused on the patient and delivering the best medicines for these patients. We cannot Like, if we think through, what we look at as AE or adverse event, diarrhea is not just something on a page. Nausea and vomit is not just a number on a page. Protracted nausea, protracted diarrhea means you cannot leave your house, and you cannot live a normal life.

That is not the type of work we should be doing. So for me, it's really when I talk about patient-centered drug development, I mean my drugs, our drugs, our medicines better make you better than the disease itself. So that's one thing. The second thing is compassionate use and expanded access program. This piece is also really important because a lot of inno-- I mean, I-- My opinion, what good is innovation if it's not reaching the people who have the disease? And so this gives you the opportunity, and so many people don't even realize that this is out there. If you, your patients, your family members, you have a disease and a drug or a condition and there's no current treatment, but yet there's innovation there, reach out to your, to your biopharma.

Reach out to your physician. You may be able to get free-- When I say it's free access to innovative medicines, and that is what we do in medical affairs. We-- And a lot of people, unfortunately, particularly people of color, don't even realize that this option is there.

So those are the two things I would, if I could leave you guys with, making sure that our medicines are truly treating the problem and it's treating the person, not just the disease, and the second thing is understand there is access innovation there for you. You just gotta grab it. I guess I'll, That's-- If I can even speak. That made me cry. how many people teared up from that story? That's, that's a hard one. in approaching it maybe from a communications perspective, how many of you have heard the term used patient journey? How many of you use the word patient journey?

Let me just say journeys are fun. When you get sick, it is not a journey. It is far from a journey. It is a nightmare.It is like being lost and being directionally challenged and not knowing how to find your way out. If we start to really understand the person and their surround, because it's not always just the patient, it is the caregiver, the care partner, the caretaker, and there's so many other, so many others around them, especially for certain cultures. I wasn't born in this country. I come from a, a family where my parents are the only ones who lived past the age of fifty-five.

so yay. my mother is still alive. She's seventy-nine, so I'm really proud of that. But we are culturally the sickest people. We have no idea what our LDL is. I just learned that I have bones of an eighty-four-year-old woman, which is absolutely horrific. I know what the right thing to do is, but oftentimes you just don't. Life, life gets ahead of you.

So as we, from medical affairs, as any one of you, as health communicators, think about the people that you want to do right for, the patients to give hope, I think we need to just start with them and kind of instead of calling it a patient journey, which we're all guilty of, let's say, and know me, anticipate my needs, and be where I am, because those are the only three ways that we can get information to the right people with what is most meaningful for them. I completely agree. I don't know how to follow that. so in medical affairs, we talk about information and communication and data, lots and lots and lots of data.

You go to a, a conference, and you see data on slides, PowerPoints galore. What we forget and what we have to remember is that every data point that you see on that slide is a person, and that person has a grandma or an auntie or a nephew or a niece, a husband or a wife. They all are actual people, and so you have to remember that at your core and be able to take that information and data and reach out to the people that need to hear it and need to understand it and make them feel not scared about the journey or the nightmare, but empowered to find out the information that you need.

A lot of people think that I'm too busy. I'm taking care of my family. I don't have the time to think about me. that's too selfish. I have to take care of everybody else. The best thing that you can do for your family that you're taking care of is actually making sure that you're taking care of your own health.

Because if you don't know whatever your status is, your PSA levels, your LDL-C, your blood pressure, your blood sugar, whatever the biomarker may be, if you don't know that and you're running this race, running a risk of hitting a pothole and jumping out of the race, what does that do to your family? How many families have we known to where dad was fine or mom was fine, instantly they died of a heart attack, and now the family's in disarray? Most of the time, the warning signs were there, but they just did not know about it. So when you bring it all the way back to that first trial, that first in human study or that phase two study to figure out what the dose is or the phase three to get it registered, each one of those bullet points is a person.

Understand that, meet them where they are, make them comforted, feel good, give them the information and the power that they need so that they can not only provide for themselves, but provide for their families. Because the-- it's always going to be, especially in our community, you know, healthcare is too expensive. You know, I like, I don't make enough money. If you don't make enough money, then you definitely can't afford a heart attack. Yeah. Yes. So you have to help them understand that, get the information out there, empower them, help them claim back their health.

Thank you for leaving us with that, Dr. Lezama. Can we get a round of applause for our panelists up here? Thank you all so much. I hope that you can take these talking points into your lunch, into the rest of your day, and thank you so much for being here.

All right. All right, ladies and gentlemen, we are about toDismiss briefly for lunch, but we just want to share a couple of things from this last panel. Wasn't that a powerful panel? Come on. Jade, I know you have something. Yeah. You know, one of the things that I keep hearing being echoed throughout this entire summit today is the importance of showing up where people are and making information accessible and easy to understand. You know? If, if we aren't making it easy to understand, ChatGPT will, and it'll be inaccurate. Right? Yeah. Or they'll run to TikTok, and it might be good information, or it might not be.

Right. So Derek, what'd you think? Well, I, I've got a personal fight in what Dr. Tonya Smalls said when she was talking about Alzheimer's. My grandfather passed away from Alzheimer's. This was thirty-five years ago. This was before all of the information was, so we as a family were scrambling, trying to find information. But one of the things in that last panel was to talk about it. That was the theme. Talk about it. If you don't hear it, talk about it. If you see something, talk about it. If you don't see something, talk about it. And it was about sharing that information that really helps to shape generational health.

So far be it from us to be in the way between you and lunch. So we wanna dismiss everybody for lunch. Lunch is to my left, your right. There are plenty of tables, and over here to my left, your right, also we have a conference room. If you continue going past the glass, you will also see, additional space as well.

And I was just telling my esteemed panelists that this panel has probably got the hardest job of the day. Why? Because we're coming back from lunch. Everybody's got full bellies. Everybody's been laughing, joking, seeing friends that they haven't seen in a while, exchanging phone numbers, wanting to talk. "Girl, what you doing tonight?" All that good stuff. but we are back to talk about something important, today. So a little rule of thumb, a little housekeeping before we get started. If you see your neighbor, because I know it's not gonna be you, but if you see your neighbor doing this, you know, because it's after lunch, just remind them to do what they do during church when that happens.

If you find yourself doing this, just come up slowly and say, "Amen. Amen" And nobody will question you. Nobody will question you. All right? Today, I am so happy to serve as moderator for this panel today. This is one of the, the panels that I'm most excited for because it hits so many people, in my community. It's hit so many people in my own family, but we're talking about kidneys and kidney health today. I'm joined today by Dr. Janice P. Leah. We've also got Dawn P. Edwards. We've also got Dr. Laura Williams and Dr. Janice Desir. They'll tell you more about themselves as I ask them, their questions, but let's get right into it.

This is gonna be one of those panels, y'all, that y'all wanna write some stuff down and take it home and share it with your family. So first question is, I wanna set the stage.

Dr. Leah, March, this is Kidney Awareness Month. So could you help us just level-set the conversation, just explaining what is kidney disease and who's impacted most by kidney disease? Why is it so important? It's great. Thank you, Derek. thanks everyone for having and attending this panel. This is so such an important topic. And, you know, I've spent my most of my adult career as in medicine taking care of kidney patients. So chronic kidney disease means when over time the kidneys are not doing the job they are intended to do, and that's excrete toxins from our blood and excrete, water and excess fluids that we drink in every day.

CKD is the short term for that. We have stages one through five. Five is the worst. That's when someone has pretty much no function of their kidneys, and after you have to have dialysis or a kidney transplant. Now, the issue with chronic kidney disease that's so alarming is that it can be, we call it a silent killer, 'cause it can be asymptomatic. patients don't really know that they have it until more closer to the end stages. So we're here today to kinda talk about how we identify chronic kidney disease earlier. There's thirty million plus people in the US who have some form or stage of chronic kidney disease.

And then- Thirty million. Yes, thirty million. One in seven individuals have chronic kidney disease. The disparities really come to play with the minority populations. For example, African Americans make up thirteen percent of the US population, but they make up thirty percent of those who are on dialysis or need a kidney transplant.

So they're four times more likely to end up on dialysis compared to white counterparts. Also, Hispanics are two times more likely to progress to end-stage kidney disease. So, so it's a, a particular problem in those communities.The other important factor is the risk factors. If I did a poll of everyone in here, I know that at least half would either say they have diabetes or high blood pressure or know someone in their family. Those are the major risk factors in having a family history of kidney disease. So if anyone in your family has it, you're at risk. And so we have to get the word out about that.

The disparities don't just stop there. Once we get diagnosed with chronic kidney disease, there are disparities in care, there's disparities in access to medications that, that patients need. There's the social determinants of health. There's reduced food or increased foo-food insecurities, access to healthcare, so they can't benefit from early, diagnosis. Now, let's get to the phosphorus part. so the kidneys- What is that first? Yeah. Phosphorus is a mineral that's in our bone. It keeps us having healthy bones, but it's something that has to get excreted by the kidneys.

So if you don't have normal kidney function, you can't get rid of the excess waste products, including phosphorus. So phosphorus built Remember, phosphorus is a mineral. It's like a rock- -if you get too much of it, so your blood vessels get calcified- Okay. -and your tissues, your heart. So you're, you're predisposed to bone issues, fractures- -a lot of bone pain- -and then hardening of the arteries that lead to- -heart disease, heart attacks, strokes, et cetera.

So this is why this is so important for us to have this conversation because if you need to get a kidney transplant and you've had high phosphorus levels over time, your blood vessels are calcified, and so that transplant has to be connected to the arteries that-- in your body. And if there's calcifications in the blood vessels, guess what? That kidney is not gonna work well. It's not gonna get the proper blood flow. Okay. Dawn. Yes. being a patient, when did phosphorus become important for you? can you share a story about how it's personal for you? Yes. thank you so much for having me here to share my journey with you.

Thank you, everyone, and thank you to blackdoctor.org for highlighting this very important topic. so I'll share with you about how phosphorus and phosphorus-lowering therapies and, how all of this is so important to a kidney patient. I was diagnosed with kidney disease at the age of twenty-two after giving birth to my beautiful daughter, and that's not normal. I don't have hypertension or, diabetes. I had something called scarlet fever when I was an infant, and it led to, down the line, kidney failure. but phosphorus became important to me almost immediately after my diagnosis.

However, back in the nineties, education was very limited, so I didn't know what it was. I started to find out about it down the road. there's medications that a dialysis patient takes called phosphorus-lowering therapies, and you take these huge pills, at-- with every meal and snack. So depending on what your blood levels are, that determines how many pills you take.

So I had to take three pills with every meal and every snack. Now, being a twenty-two-year-old, my diet was basically beer and pizza, and those are high phosphorus foods. And sometimes I-- At that point, I didn't know the importance of these phosphorus-lowering drugs, so I just, you know, didn't take them. later on down the road when the doctors were telling me, "Well, your phosphorus is too high, and you gotta start taking your medications," I was, "Yeah, whatever." And I noticed that my skin was itching. And when I did take the pills with me, they're huge pills, so if I'm going out for all day, they don't fit in the cute little pillbox that ladies carry.

You gotta take a Ziploc bag and throw them jokers in there. And, and then if you're sitting down at a nice dinner table, how does that look, you pulling out these big horse pills, you know, throwing them back at the dinner table? So it's-- the pill burden is huge. however, as I started to grow up and learn more about kidney disease and start my advocacy work, I learned that these phosphorus-lowering therapies were essential to me protecting my heart, for me to protect my bones, and for me to, to have that phosphorus level at an acceptable level for me to continue to, to feel well and to stay healthy.

And s-so, um-I took my pills, and I also learned about home hemodialysis. So for the past twenty-plus years, I've been doing my dialysis at home myself, which is, another great topic for us to discuss another time. But, I get much better outcomes.

I wanted the best for myself, which is why I stuck to my medication regimen and doing my dialysis treatments. Well, we fast-forward thirty-four years, and last year I was called for my second kidney transplant, because everyone take note, transplant is a great treatment option. However, it's not a cure for kidney disease. So I had one kidney, it lasted six years, and it stopped working, and I had to go back on dialysis. So I went for a second transplant almost a year ago, and, we got all the way up to the operating room, and they opened me up, put me to sleep and everything, and when they got inside, they found out that my arteries had calcified, like Dr.

Lee just described, which means that they were too hard to sew the new kidney onto, so I lost the transplant. So I am back on dialysis. I probably will not be able to be a candidate for transplant again. however, you know, I'm, I'm living, and I made it through. I'm back on dialysis, but my story is to be, um-- make people aware of what this disease is, how important it is to get checked before we get to this point. Get-- It, it's a simple urine test, to get checked to make sure that you don't have those pre-markers for kidney disease, and if we already are dealing with that, home dialysis is something to look into.

Transplant is very important because it greatly improves the quality of life, but the medications, taking care of yourself, and keeping healthy while you wait or while you're in between these things is paramount in order for you to be able to live, a-as long as I have.

not many of us live thirty-four years with kidney failure. I believe the national data now is fifty percent of the patients diagnosed with kidney disease make it five years. Wow. So this is a scourge, particularly in our African American communities. And to those of us who have it already, we want people to know, to be aware, and to protect themselves from going down that road, and to those who don't have it yet, please don't, don't take this lightly. Kidney disease, one in seven, so that's, that's quite a few people in this room right now who may be in this chair in a few years.

So think about that. and- Well, no, Dawn, I was just gonna One, I was just gonna thank you. Yeah. Thank you for being here. Thank you. And then, two, I just wanna ask you, just how are you feeling today? How you doing? thank goodness today is a good day. I have good days and bad days, but I never stop my advocacy work. If I'm in bed, I got the iPad open and I'm talking, on the iPad, doing meetings and, and advocating. But, I'm not gonna stop- Amen ...um, because you all are too important to me. So I wanna thank you for the invitation, and thank you for the time. Well, thank you.

Dr. Williams, Dawn mentioned, when she was twenty-two, she didn't really realize the importance of phosphorus. When should we start to h-have these conversations? What is it doing to the body? All that good stuff. Yeah, no, thanks, and I echo my, co-panelists in terms of, you know, the invitation to be here. I'm, the chief patient officer and chief medical officer at Ardelyx, which is a small biotech company, headquartered in Boston.

And, I'm an internist by training. I did my subspecialty training in infectious diseases, but I've been working in drug development, at different pharmaceutical companies now for about thirty years. And y-you know, you hear these stories. I mean, one of the drugs that we worked on is, is one of those phosphate lowering therapies. And so it, it means a lot to me. But I got into this business, I think you guys heard a story earlier on, it was the height of the HIV epidemic, and, I was, doing my fellowship at University of Washington in Seattle, and I had a patient who, had HIV, full-blown AIDS.

I had admitted him to hospice. At the time, we only had AZT, so it was before we got all of the cocktail, you know, drugs that we have today. I admitted him to hospice. eventually, we got one of those, drugs as, as a, a pr- a previous speaker talked about, for compassionate use. We got a protease inhibitor. I gave it to him. He got so much better.Um, he got kicked out, and I had to help him find an apartment. That was unusual, right? I mean, somebody goes to hospice, usually it's a celestial discharge. It's not, you know, going back out there in the world. And so that's what got me in- interested in drug development.

I wanted to know how these drugs came to be. And so, you know, you hear these stories, you hear Dawn's story, and it's particularly moving to me because she was actually very instrumental in us getting one of those phosphate-lowering therapies approved with the FDA. When we had to actually tell our story, you know, we came in there, we had reams of data, all these data points.

But the patient stories, that's what stole the day, right? Because this is data with a soul. That's what that is, right? And so when you ask when should patients understand, you know, sort of phosphorus, just taking one step back. I mean, phosphorus is important. Bone, as Dr. Lee said. Also, it's part of the energy unit in our body, so it's in every cell. It's absolutely important, right? And usually it's controlled very nicely, like, because the kidneys are working, and the kidneys basically get rid of any excess phosphorus that we take in our diet. But when they fail, then the phosphorus levels build up.

And you've heard what happens when the phosphorus levels build up. I think it's really important, first and foremost, to understand if you have chronic kidney disease. Not understand, but to know. She just gave you these numbers. Like, thirty-seven million folks in the US have chronic kidney disease. Guess what? Up to ninety percent of folks don't know it. That's right. Okay? So that's where you should start, right? And once you know that, that that is the case, you know, the nice thing now is that there are a number of drugs that hopefully slow the progression so that you don't get to stage five, which is what we call end-stage kidney disease or end-stage renal disease or kidney failure.

All of those, right? You don't wanna get there, but if you happen to get there, you have to know those numbers, and you have to advocate for yourself in terms of all of the available treatments that are out there.

And that's why I started with the story on the HIV. There are a number of new therapies that continue to come on board, but you may not even know it. Most dialysis patients don't know it. And phosphorus is so important. There's so many complications that dialysis patients have, but guess what? Phosphorus, high phosphorus, carries the greatest risk of all of them. And so getting that phosphorus controlled is absolutely key. And so patients should know what their phosphorus levels are early on. And that's not a problem from a dialysis patient standpoint because their center actually measures their dial- their phosphate level, once a month at least, sometimes more frequently.

I would suggest that once you know you got chronic kidney disease, you start noticing all the other, you know, sort of variables that go with that, including phosphorus. Not waiting until, you know, God forbid, you get to end-stage kidney disease. So it's very important, and you've heard the complications. One of the big ones though, again, is transplant readiness. Yes. You know, we know that if we actually try to put a, a transplant in a patient who has a, a really elevated phosphorus, that that graft is more likely to fail. Mm-hmm. So having it controlled is, while it's not an absolute requirement to get a transplant, every transplant, you know, workup looks at it and, and actually monitors it.

And if it's high, a lot of times you actually are not allowed to get on that transplant list. And so doing everything you can to get the phosphorus controlled is the, is the only way you can do it.

And there are three ways you do it. It's diet, it's dialysis, and it's medications. Oftentimes when you get to kidney failure, diet and dialysis are just not enough, and so you need these phosphate-lowering therapies. Wow. You know, I'll be honest, you know, before family members suffered from chronic kidney disease, I didn't know how important the kidney was. You know, you were just saying this, you know, and I'm thinking, wow, it's so important that we know about this before something happens. 'Cause then people are like, "Oh, I didn't know the kidney was that important," until something goes on with the kidney.

Right. You know? Dr. Desir, you know, we've talking about, PLTs or phosphor- phosphate lowering therapies. If they're so important, why are there so many barriers to getting it done, and what are those barriers? Yeah. So, thank you also for the invitation, and I, I think what I wanna also do is, lay more foundation to what my co-panelists have all said. So you have Dr. Lee, who's in the space of, I'm gonna say, medical education and advancements in terms of what we as doctors need to know. And then you have Dawn, who's the root of everything with the patient experience, and Dr.

Williams, who's about innovation. But what I wanna lead you into is what, what is the clinician life in trying to deal with the challenges of what a patient like Dawn is living. So you have somebody who may be in what I'm gonna call a food apartheid, and what I mean when I say that is they were essentially impacted by generations, 'cause we're talking about generational health, of having to be in a community that doesn't have fresh food.

And when I talk about fresh food, phosphorus is absorbed in two different forms. We're gonna call it inorganic and organic, and your fresh, uncooked foods actually allow you to absorb phosphorus slower. It is your shelf-stored foods or your shelf-stored meats, your prepackaged sausage or ch- you know, hot dogs, et cetera, that have high, high rates of phosphorus absorptionBut if you have somebody who's in a community that doesn't have a fresh supermarket, but more so has bodegas or small kind of delis and such, I mean, they're listening, and they're buying the turkey, and they're buying the ham, and they're doing all the good things as they understand what healthy means.

But the reality is those foods are so filled with additives that they're not getting the correct medication to support the fact that they're not in the right environment. So when we talk about access, access number one could be, yes, you're not getting the right medication. But then access number two is you're also not in the right environment to get the right foods. So Dr. Lee prescribes the right medication, Dr. Williams innovates and creates the new therapies, but Dawn's not getting it. Why? Right? Why? Because there is a entity that I'll say that is making rules that is not fully versed in the understanding of the lived experience, and the entity is making decisions based on dollars.

They're not making decisions based on the actual clinical outcomes. So what happens? You sacrifice essentially the longevity of patients' lives by the dollar for today, and that's the problem.

In order to have success and advancement and better access, you have to invest the dollar now for the savings later, and that concept is essentially social ROI. So part of my background is not only as a nephrologist, you know, working in the community, but also as a physician advisor trying to help hospitals in terms of healthcare quality. And when I look at charts across the United States, it is so striking to me that what we're trained to do is to look at the medicine, which is what we do, but at the same time, what we fail to do, and I think needs to happen, is we need to put social context in the way we're looking at the medicine.

So we can't just say, "Oh, your phosphorus is eight." Your phosphorus at eight is because you live in an area that doesn't allow you to have access to the right healthy foods. We need to maybe think about food as prescription for you, options of culinary medicine. And with that, think of the innovative binders that Dr. Williams creates as the option for you versus the cheaper option, which is what hon- honestly it comes down to being the, the barrier. The dialysis units have now been in charge with dispensing phosphate binders for those who are on dialysis, and what do you think they're gonna do?

Do you think they're gonna pick the most expensive one? No. They have a bottom line and a margin. They have people they need to keep employed and a unit they need to keep open. So they're gonna pick the most cost-effective one, but that's not necessarily what our patient needs, and that's the challenge.

We are working for an entity, and even though we were trained to do certain things, we are constricted with our toolkit for those who are in the nephrology space, and that's the area where I think all of the dialogue from earlier today, this concept of we need to start having these conversations about general h- general- generally sorry, generational health, that we need to start understanding that without our awareness about how where we eat, where we play, where we live impacts our health, that we're not gonna be able to make the right decisions to turn the shift and shift the tides towards more kind of, better health and wellness for our future generations.

Wow. Well said. Wow. Well said. So when you hear that, Dawn, what, what's your, just as a patient, what's your experience been with PLTs and, and phosphorus lowering therapies? Well, as Dr. Tecier said, the, phosphate lowering therapies are now a part of the bundle, which means that, well-intended, legislature is doing unintentional harm. Patients receive their phosphorus lowering therapies for free, paid by CMS, who pays for eighty percent of dialysis care. So we don't have the co-pays to pay for phosphorus lowering therapies. However, the unintentional harm comes because the dialysis centers are giving us the cheapest one- Uh-huh which is calcium, and the, more expensive ones that may have iron, that may be, a, a small Tic Tac size tablet that you take once a day instead of with every meal and snack, those are not available to us because the dialysis center's not paying for that.

You get these free calcium ones right here, and you like that, right there. And for us as patients, food is, yes, it's medicine, but for us as a people, food is love. When my mother goes in the kitchen and she make those lima beans and ham hocks and, you know, and she serves it- Cornbread? Is cornbread one of them? Cornbread. Okay. Yes, that's right. Just checking. Just checking. Cornbread. Fried chicken on the side. Right? how can you say no when you smell those herbs and you smell everything cooking in the kitchen, and I have to say, "You know, I can't have that. I have to have this bro this turkey, chicken breast here." You know?

or out of convenience, a lot of dialysis patients, once they're done with treatment for three hours and an hour with transportation and waiting for transportation to go home, food's not in the, in the subject. Getting into bed is in the subject. So we're gonna stop at Popeyes right here and get that value meal and get into bed and try to rest from your treatment. So out of convenience, we're doing unintentional harm to ourselves. A patient that, gets up at five o'clock in the morning to go to a dialysis treatment has nothing, and they do a treatment, and you're exhausted afterwards, and-You pick up something and go home because you're too weak to cook.

So as Dr. Laura said, if you don't take those medicines and make it to your treatments as scheduled, you can't even miss a dialysis treatment because you only go three times a week, and your kidneys work twenty-four hours, seven days a week.

So we're starting out at a deficit. So you have to make your health the priority. So now that I'm eating clean and I'm saying no to all of those, outside foods, I'm finding out, like Dr., Desia said, that the good home-cooked food- Mm-hmm is better than the stuff outside. So that's why I'm feeling a lot better- That's good and I'm feeling healthy 'cause I'm making better choices for myself. That's good. That's good. And Derek, if I could just- Yep. I just wanna make sure people understand what when we say the bundle system and what that means, right? Because I think that's a really important piece of this whole story.

so dialysis, is paid for So when a patient has kidney failure, dialysis is paid for by, by the government. That started in nineteen seventy-two, right? Mm-hmm. and the payment initially was a fee for service. So a dialysis patient sits in a chair. Whatever you have to do for that patient when they're there, you bill the government, they pay you. Well, they're-- that includes their drugs, it includes the treatment, it includes the care that the, the, that the, dialysis team, the, the, the any blood work that's needed. And so that's, that happened from nineteen seventy-two until two thousand and eight, and they started to see that there was one particular drug that was given during dialysis to help patients with anemia, with low blood count, was being overused, right?

So they were using too much of it, too much, too higher doses, using it in patients that probably didn't need it.

and at the same time, the science was coming out saying that you're actually hurting patients by doing this, right? So you couple the science with the dollars, and they said, "Okay, we're not gonna do this fee for service thing anymore. What we're gonna do is we're gonna give you a fixed rate." That's what bundle means. So a fixed rate. Now I sit in the chair, and I gotta have all those things, that I already talked about, but you're just gonna get a certain amount. Let's say two hundred and fifty bucks. So you figure out how you're gonna use it. So of course you now have to You gotta pay for the dialysis itself, you gotta pay for the staff, you gotta pay for blood work, and you gotta pay for any medicines that are being administered while you're sitting in that chair.

And so what are you gonna do? You-- I, I only have two fifty. Right. I'm gonna use what I can use and do what I can do. This is where w-we talk about social determinants of health, but this is a government determinant of health, right? Policy can actually, you know, make a huge difference here. And so these phosphate-lowering therapies, because they're oral only, they, they can only be taken by mouth, right? So if it's a binder, you take it with food because it binds the phosphorus that's in the food. The newer drug is a blocker, it's not a binder, so it blocks the absorption of sodium.

I mean, of phosphorus. Sodium too. But of phosphorus, right? And, those are the two types of drugs, but that's it, right? And I, I at the end of the day, you're all-- I mean, it, it's, it's what we call the least costly alternative.

So that's what's being chosen. And the deal is, I guess what, what is most important is that, that you gotta preserve that physician-patient, you know, shared decision-making. You take it away when you have a protocol that says, "Hey, we're just gonna have these two drugs on our formulary, and that's it. And i-if the patients don't respond to it, o-oh, well." A-and that's a problem. And so these oral-only drugs were not part of that bundle system until the beginning of last year, January twenty twenty-five. and now they are in the bundle system, and it's problematic. There was a survey done by the American Association of Kidney Patients that said from January even through June that there was problems from a patient standpoint actually accessing these phosphate-lowering therapies.

Thirty-eight percent of patients said, "I got a problem. I can't get them." Seventy percent of physicians said, "I have a problem trying to prescribe them." So it's an issue. it's a big issue, and, that's one of the things that I think Dr. Desir was, was, was, was speaking about in terms of things that, you know, the system is doing that we, we obviously want to see fixed. Dr. Leah, you know, you've been at, Emory for thirty years. You're, you've been teaching doctors. What are some things that, you would tell, that you would want the doctors and families want to know about kidney health before all of this, you know, even start?

What, what should we know? Yes, a very important question. Early detection is key.

you've heard some discussion already. Urine test to tell if you're leaking protein into the urine. It's just a simple urine test. And then a blood test to determine what their percent kidney function is. It's called EGFR. Some of you have may heard the term creatinine. Those are things that are n-normally done when you go to your ph-physician for regular checkups. Now, the interesting thing is I've been doing this for thirty years.See lots of patients. They come to me because they're almost ready for dialysis. And so what happened all these years before they got to this point?

Well, they've been seeing other doctors and no one picked up or realized the importance of what their kidney function was. As, as I mentioned before, patients don't really have symptoms until the later stages. Right. so the symptoms that they have are high blood pressure, poor appetite because you're not excreting the toxins, you feel really tired, and swelling in your legs. Those are some of the more prominent symptoms as you progress to the later stages. But you can be CKD Stage 3, even early Stage 4, and not have symptoms. So, so the, the key message that I try to teach, young students, and medical, physicians is pay attention to those numbers, and also to make sure the patients are advocates for themselves.

You know, you need to go to your doctor, ask about what your kidney function is. Ask if you have protein in the urine. You know, your grandmother had kidney disease. Well, guess what? You're likely to have it too.

And so those types of things. The other important issue that I think is a big takeaway from this whole meeting is advocacy. And I think a lot of younger physicians need to know that they need to be advocates for whatever disease process they're interested in, get involved with public policy. prevention is key. All of this information we've heard about dietary issues start early on, and make sure that they're aware of what those dietary issues and what the barriers are so they can advocate for better access. these therapies don't work if the patient can't take them- Right and if the physician can't prescribe them.

So really being advocates, in prevention and early detection I think are key. I wanted to also just say that, you know, this is, March is Kidney Month, but next month is Live Kidney Donor Month. Oh. Okay? And so one of the big problems, we've talked a lot about the issues with transplant and suitability because of poor medical conditions. There's great disparities in who can get a transplant, and African Americans particularly really, really low rates of transplant and wait longer on the transplant list. And so it's important that we are advocates and getting all the families to know that they can donate kidneys to improve the donation rate.

Thank you for that. Mm-hmm. Sure. wow, we are running a little bit low on time, but I wanna give everybody a chance just to end. You know, we've heard already that kidney is important. I mean, just going through the hood today, you can see there's dialysis center after dialysis center.

You know, you hear it from founder members. So I would ask each of our panelists, what's one thing that you would want to leave with us? What can we do starting today? W- how can you empower us today to change lives today? You can start. Dr. Desir. No problem. I, I think I wanna actually jump off to what Dr. Lee just said in terms of advocacy and one last quick learning point. part of the reason that I'm even here today is because I got involved with an organization called Nephrologists for Equitable Kidney Care, and I will tell you the lived experience of being here in ground zero in New York as a nephrologist and having to see that all that I was taught, I had to change and adapt what I was doing based on who I was treating, 'cause I was in a large academic hospital some days, and I was in a community hospital in the middle of South Bronx the other days, and they did not have the same resources.

And soon after that is when the American Society of Nephrology and NKF Task Force came out and made a change about the GFR equation that Dr. Lee mentioned, saying that it was biased. Because it used to be that there was a, a component in there for race, and it would falsely elevate your GFR. And so that meant that we were already in situations where our kidneys were getting damaged, and it was worsening as a consequence of that. But I say that now because the correction has actually helped advance transplant readiness in the sense that, people have gotten time back, and so maybe an average of two years has been credited to those individuals who were previously lower on the list, which were often Black and brown individuals.

But what's happening is, take things like phosphorus, and you take Don's story. Don's story is an example of what happens. You gave two years back, but now you're taking it away because you're actually not effectively treating us to optimize us for transplantation. So I guess if I would leave, it's that education of knowing, back to talking at the table, right? There are 30% of labs that have still not updated the GFR equation, and you have a broad audience across the United States. I encourage you to look at your blood work. I encourage you to tell your families, "Look at your blood work," because you don't know what part of the woods that they're in where that GFR might still be having that African American component.

And make sure if it's there, you let your doctor kindly know, "That's not up to date. Please tell me my correct GFR," and use that accordingly to kinda guide your decisions. I would also say, too, don't let this be the end of the discussion in your neck of the woods. Make sure you take this discussion back to your families and to your networks, because it is a public health crisis. And so it's not going to make shifts or changes until we all choose to start to talk about it. So good. So good. Yeah, and I- Dr. Williams I just wanna go back to one other thing that I shoulda said when we were talking about the whole bundle piece.

These oral drugs shouldn't be thereYou can't give them during dialysis. You have to take them with food. So dial- at the, the, the drugs that are included when you're sitting in the dialysis chair are the drugs that are actually administered there.

These drugs can't do that, and so they never actually even should have been in the, the bundle. So that's a policy issue. The one takeaway though that, that I would say is what, everybody else has already said, and we've heard it in previous panels as well, is really knowing your numbers. It is knowing your numbers. These are easy tests to do. Matter of fact, most of the time if you go for your annual checkup, they will do, some people call it a Chem-6. That's where the creatinine is. And then from the creatinine, they calculate the GFR and, and take into account what, you know, equation they're using for the GFR.

But know those numbers and follow them over time. And also as, as Dr. Desir said, you know, have the conversation. I mean, somebody said this morning, "We don't talk about health when we get together. We don't talk about why, you know, Uncle Joe died." "Oh, what'd he die of?" "I don't, I don't know." Mm-hmm. "He just died." So we all gonna die someday. No, okay. No, but seriously, just, just have those, those conversations because they are really important, and, just know, know your numbers. Thank you. And I just, I just wanna say really quickly, this is everyone's takeaway.

we all go shopping. Even if you don't go walk up and down the aisles in a supermarket, your Instacarting or Whole Foodsing or something, look at the ingredients. Read your labels. If there's stuff on there that you can't pronounce- put it back. And, you know, that's something that we can all start doing today, and that will help you to get your body in check, to stay healthy.

And this is good for the kids. They need to know how to turn a box around and look and see what's on there before you put it in your mouth 'cause you can't take it back after, afterwards. And, go and get your checkups regularly scheduled. we're not all, gonna be here forever, and you have to take that car to get the oil changed and all that. We have to do the same things for us. So take care of yourself now so that you don't have, chronic illness and things like that to deal with later. If I could go back, I would definitely do things a lot differently. Dr. Leah, close us out.

Well, I, you know, I just wanna emphasize again early detection. I think everyone in here needs to be advocates. Go back to your community. Spread the word. I'm very involved in community activities, church health fairs, et cetera. Those are all great platforms to really reach the community. And so that, 'cause I a- what my major statement or belief is that the best patient is the educated patient. And so we need to just get the word out there. Advocacy is so important. one of the biggest, things in my career is being part of the American Association of Kidney Patients, and so they're very active in public policy.

For example, there's things that can be done that can really enforce this early detections through the United States Preventive Task Force. They haven't come out with any guidelines in 20 years for kidney disease recommendations and screening, so just efforts like that I think would be very helpful and go a long way.

Awesome. You know, this panel has, has dropped so many gems. for me personally, one of the things that, that I hear everybody saying is that your voice matters. You know, be an advocate just right where you are, an advocate in your family, in your community, with policy, wherever it is. Your voice matters, and I'm, I'm gonna take that to heart and actually do some things personally myself, within the next coming weeks. So please give another round of applause for this incredible panel- as we get ready for the next, the next panel. Thank you. Thank you. Thank you.