Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. And joining me today to highlight heart failure in African American individuals is Dr. Clyde Yancy. He's the Vice Dean for Diversity, Equity, and Inclusion and Professor and Chief of Cardiology at Northwestern Medicine.

Dr. Yancy, it's always a pleasure to have you on with us. Can you start by telling us a little bit about heart failure in African American individuals? What's the prevalence and what have you seen in the trends?

Clyde Yancy, MD: Melanie, I'm so glad to speak with you and particularly to engage with my Northwestern Medicine peers. This is such an important topic and it really has consumed so much of my scholarship for the past three decades. Some time ago, we recognized, we were amongst the first to describe in fact, that heart failure when experienced by someone who is self-identified as African American is a different illness. It happens at an earlier age, has greater consequence, and typically and inexplicably seemingly had a lesser likelihood of being caused by a prior myocardial infarction, meaning that the majority of African Americans with heart failure actually had a non-ischemic etiology, mostly attributable to hypertension or dilated cardiomyopathy, without much science malady to make that make sense. One of the reasons why we approach this new set of data points as heart failure in African Americans Version 2.0 is that we have exciting new science to discuss.

Melanie Cole, MS: This is a really interesting topic, and I think it's an important and timely topic as well. So, tell us about the editorial that you published. What were the main takeaways? Tell us about it.

Clyde Yancy, MD: So, the editorial was in conjunction with shared work from my colleagues at Duke University Medical Center and Brigham and Women's Hospital using an already existing well-identified dataset. The investigators were able to apply genomics to understand what's the natural history of carriers of the gene signature that leads to amyloid heart disease, without even verifying that it was amyloid heart disease, just having the gene signature, the carrier status, trying to understand that that in and of itself served as a predictor of who was likely to develop heart failure and have heart failure-related events.

In one way, surprisingly, in other words, not surprisingly, we discovered a very close relationship with the carrier status in developing heart failure uniquely attributable, and this is a key consideration to African ancestry. This is so important because it means we can take one more step towards eliminating the need to specifically articulate one's self-identified race and our understanding of the likelihood of disease and rather, we can look at typical risk factors like hypertension, obesity, diabetes and, added to that, these genetic markers and understand in this space that's not attributable to ischemic heart disease, the atherosclerosis, perhaps we have more questions answered about why individuals end up developing heart failure.

But the data were so striking, about a four-fold increased likelihood of developing a heart failure event if you simply had the gene carrier status that really does make us appreciate that, yes, there are many different things that go into the experience of being African American, the experience which, by the way, does contribute to the disease burden, particularly the social determinants of health.

But now, Melanie, here is a key consideration. We can take the three components, the traditional risk factors, obesity, hypertension, and the diabetes, the social risk factors, the social determinants of health, and then the genomic risk factors. It's a very important gene signature, this carrier for amyloidosis, TTR amyloidosis, and use it to help identify many of the lingering questions over the last decades about why certain individuals developed heart failure without clear evidence of coronary artery disease.

Melanie, our work is not done, because we still have to understand the pernicious influence of bias and decision-making, and we still need to understand the next version of the social determinants of health. There's more to it than just the several aspects that are identified. And as well, we need to understand what are the other genomic markers that might be at play here. But we've set the template now to open up a brand new area of discovery, of understanding. We have to think globally. Think about the social circumstances, the traditional circumstances, and now the genomic circumstances to really understand why groups of individuals behave differently with the natural history of common diseases.

This is an exciting time intellectually, yes, but it's even more exciting clinically because it allows us finally to understand why that patient in front of us might have a very different disease experience than another patient with the same condition.

Melanie Cole, MS: Wow, Dr. Yancy. So based on our new understanding and what you've been discussing as far as carrier status, what about genetic screening? How can we address those health disparities in genetic screening? How can we find out so that we can utilize this information?

Clyde Yancy, MD: It's a very insightful question, Melanie, and it's one that we considered carefully in the development of our prior statements in the literature, because we understand that one's genomic information is about as personal as personal gets, and everyone has a certain, feeling, a certain trust equation with regards to having access to that information, and more importantly, allowing others to have access to that information. Some is very straightforward. Think about the commercially available genetic surveys that give you some inferences regarding your family lineage. But others, especially because of past experiences, maybe very distrusting of that information and not wanting any of it to be known by anyone, even themselves, for fear of it getting into the wrong hands.

You know, there's the GINA Act here in this country, which prohibits employers from using this information against you in the workplace, but it's restricted just to that. Insurers might still use this information if they have it, and employers may still find a way to use this information. So, we need refinement of the GINA Act. We need to understand how can we assure patients, particularly patients that have reasons for mistrust, that their information really is tightly held and not going to further identify them or their family members. But the power of the future, and let me say that again, Melanie, the power of the future is in understanding the full array of variables that lead to the risk for disease and the experience with disease.

When we understand that full array, Melanie, we can be much more precise about interventions. At the outset, that is prevention. And we can be much more targeted with treatment strategies, giving patients only what they need and not things they don't need. That's a near field future. That's not in the horizon. That's a near field future. It's the power of data science, the power of genomics, the courage to sit and think about, can we go beyond the way we've traditionally described disease and start thinking about some very new platforms? I think we can.

Melanie Cole, MS: Well, it certainly is an exciting prospect and initiative that you're creating, Dr. Yancy, with your colleagues. And as you're speaking to us about things like the GINA Act, what are the implications for practice as you're speaking to other providers who are also addressing These health disparities, trying to get their patients in to work on preventive medicine, to work on only giving what that individual needs and making sure their privacy is protected. What bits of advice do you have for them in doing that?

Clyde Yancy, MD: So, three specific points of clarity for my peers that are thinking about this at the bedside. The first, we're not there yet, we're getting there, but we still need to follow the already extant guidelines and practice accordingly. We hope to soon get to where we can use genomics and proteomics and the social determinants and be more intentional with our prescriptions and more precise. So, that's the first thing. We're not there yet. We're getting close. We're not there yet.

The second thing is that we can begin to de-emphasize race. Think about all the pain and anguish that emphasizing race has created for us within the whole construct of Medicine. We can begin to treat this as another one of the variables. Yes, there is something about being racialized and minoritized, but it's not the overarching theme. And it's very, very important that my peers understand this. There is nothing biologically pertinent about a self-identified race.

So, the first two things, we're not there yet. We're getting there. The second thing we can de-emphasize race, and we have to remember that race is not biologically pertinent, but the racialized experience may be. And the third thing is get ready. Get ready because the costs for genetic screening is coming down, coming down, coming down, not fully covered by all insurers, particularly Medicare and Medicaid. But in our practice lifetimes, I want to be very clear about that, we will face the option of getting more clarity about our patients by proceeding forward with these genomic assessments. We need to be prepared. This kind of research, this kind of conversation helps us anticipate a near term future where there'll be more data. So the first takeaway, we're not there yet, we hope to get there.

The second takeaway, let's minimize some of the emphasis on race, understanding there are some circumstances where it still matters, but it's just one part of a more global equation. And the third thing, let's get ready. because genomic screening is coming. We need to be prepared. We need to be informed. Information is powerful. Let's not be powerless.

Melanie Cole, MS: Thank you so much, Dr. Yancy. I do have one more question for you, if I might. I'd like you to speak about Northwestern, specifically the Bluhm Cardiovascular Institute. Tell other providers what you're doing there to address those disparities in cardiovascular care.

Clyde Yancy, MD: Melanie, it would be the content of an entirely different podcast to go through this in great detail. But I will tell you this, the Bluhm Cardiovascular Institute now is one of the Top 10 cardiovascular enterprises. Heart Surgery and Cardiology in the country is fully engaged in Genomic Medicine. We have one of the largest clinical groups of cardiovascular genomic experts in the country.

We have wherewithal and expertise in interpreting the results of genomic screening. And importantly, we have genetic counselors that a priori, before we do the screening, can help patients and their families understand the implications of having these data, the permissions that they can and can't allow, the way in which they can restrict their information so that it's used precisely for the purposes intended. All of these things are very important and we are ahead of the curve, I believe, across the country in appropriately deploying Genomic Medicine.

Melanie Cole, MS: Thank you so much, Dr. Yancy, for joining us. What a great guest you are. As always, thank you again. And to refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/cardiovascular to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. I'm your host, Melanie Cole. Thanks so much for joining us.