How Black Americans Lost 80 Million Years of Life Over the Past Two Decades

In this video, Jeremy Faust, MD, editor-in-chief of MedPage Today, sits down with Karol Watson, MD, PhD, and Chima Ndumele, MPH, PhD, to discuss their recent study published in JAMA, which found that the Black population in the U.S. experienced 1.63 million excess deaths in the past 20 years, representing more than 80 million years of potential life lost.

The following is a transcript of their remarks:

Faust: Hello, it's Jeremy Faust, editor-in-chief of MedPage Today.

Today, we're going to talk about racial disparities and mortality disparities in the United States. We're going to talk to two experts on this topic related to a new paper out in the Journal of the American Medical Association.

We're joined by Dr. Karol Watson. She's an attending cardiologist and professor of medicine and cardiology at the David Geffen School of Medicine at UCLA, and she's the director of the UCLA Women's Cardiovascular Health Program. In addition, Dr. Watson has been a principal investigator on several large NIH research studies and is now engaged in a new one looking at implementation of artificial intelligence.

We are also joined by Dr. Chima Ndumele, an associate professor of public health and health policy at the Yale School of Public Health. Dr. Ndumele's research focuses on understanding how vulnerable populations connect with and access healthcare, looking in particular at local policies and the impact of Medicaid enrollees.

Dr. Watson, Dr. Ndumele, and I are co-authors on a new study appearing in the Journal of the American Medical Association called "Excess Mortality and Years of Potential Life Lost Among the Black Population in the U.S., 1999-2020."

Dr. Ndumele and Dr. Watson, thank you so much for joining us.

Watson: Thank you so much for having us.

Faust: We'll start by discussing this paper, of which we are all co-authors, in the Journal of the American Medical Association. Eighty million years of lost life in two decades, 1.63 million early deaths, excess deaths. These are numbers that even years into this project, I still get chills of discomfort saying them. But also I'm proud that we've got it out there.

I want to start with Dr. Ndumele, just tell me from your perspective what your reaction was during this process when you realized these numbers?

Ndumele: Yeah. I was struck just like you, Jeremy, by the magnitude of it, right? Eighty million potential life years lost isn't just that, it's also years of actual potential loss. These are individuals who aren't going to have relationships with family, who are going to have premature loss of expectations and premature loss of contributions to society. If you, like I do, think that excellence is distributed equally across society, this is really a loss of contributions that hurts all of us.

Faust: As we look at the scope of the problem, in my view, and I'm curious if you agree with this, in a sense we have a pretty good understanding of the problem now. We know the number, the magnitude, we have a pretty good idea of the causes, and there are many of them. Does that make it frustrating that we know what to do, or is that more like, okay, we at least now have a sense of it for the first time and let's move forward?

Watson: I think yes and no. I feel like we understand many of the problems and the underlying conditions that lead to this, and we understand that many of them are social determinants.

Every time we do these analyses and control for every single social determinant we can, we do still see excess mortality. So there are things we're not measuring, and they tend to segregate with race, and we don't think it's race. We know it's not race. Race is a social construct, but we think it's something that's harder to measure and maybe more pernicious -- things like racism.

Faust: In your research, Dr. Watson, there's something that I stumbled on that I thought was interesting. We have to look at ourselves in the mirror as a society, as a country, and it's really a national problem because there's an effect where people of color who are first-generation immigrants actually have an advantage which goes away. Is that right?

Watson: Exactly. Acculturation, meaning the more you become like us and the less you remain like your home culture, the worse your outcomes are. So we have to figure out what we're doing.

We also have to think about new ways of measuring these things, because as I said, we think a lot of it has to do with racism, which is just so difficult to capture. Obviously every person's experience is difficult, but I think a lot of what we're seeing has that at its heart.

Faust: In terms of that difference, there's access and there's utilization. Dr. Ndumele, you've written about the difference between having access and also what that even does in real life, in other words, spending.

I saw a paper that you had led, I believe in JAMA Health Forum, where it's not just about who's got insurance, it's once you have insurance, how's it being used? Are people using it? Is it being offered? So can you talk about the difference between having healthcare and the disparities in terms of actual utilization?

Ndumele: Yeah, I think that's a great point.

There is a fundamental challenge that we have in translating what is essentially an insurance card into real access to care. That speaks to, as Dr. Watson suggested, the social determinants of health. What are the things that serve as kind of barriers to individuals getting to the hospital, getting to their doctor's office? But it also speaks to a kind of large systemic bias that we have in terms of who gets access to timely treatment and who is believed when they indicate that they have challenges.

What we have here, and I think what's reflected in the numbers in our paper, are a constellation of factors that are all working against Black Americans.

Faust: Can you give me a sense of the swath of history in the last 22 years -- I chose that point because that's [what's in] our paper -- in terms of just access and also use? I think about it in terms of the first 10 years of the century, then you have the Affordable Care Act with some expansion of federal programs, and then we get to the pandemic and there's this, as we see in our paper, really a setback in terms of the disparities. Is that fair? Is that the three act play?

Watson: I think that's very fair, but you forgot an act. The Great Recession had a huge impact on health.

We actually wrote a paper on loss of blood pressure control and glucose control during the Great Recession and who was disproportionately affected. As you would expect, it was the lower-income and more minority groups that were much more affected by that, because as we all know, income and education matter so much in so many outcomes.

Faust: Oh, that's a great point. I actually was not aware of that. In terms of the Great Recession having a measurable impact on health metrics, was that an isolated thing that came and went almost like a pandemic, or is that something that was sustained?

Watson: We haven't repeated the analyses, but we will, so we'll see. What we've learned so many times over is that health loss and learning loss really never get caught up. You just always stay behind.

Faust: I think we've seen that play out in the numbers and in clinic. So thanks for raising that.

Dr. Ndumele, in terms of Medicare and Medicaid access, can you help us understand some of the ebbs and flows of that?

Ndumele: Sure. Over this 22-year period, we've seen great investments in providing people insurance. In particular, the Medicaid expansion, which covered somewhere between 15 to 20 million people, was responsible for dramatic reductions in the number of individuals who said they had difficulty accessing care and in the racial gaps in metrics like those and others.

The challenge is, as we note, that some of these interventions, while helpful -- we saw that in the narrowing of the gap in our paper -- over the years aren't particularly durable. When they get stress tested by things like the Great Recession or COVID-19, it shows that they have real limitations. In particular, those things don't solve the social determinants of health that we know drive so many of the disparities and are at the heart of so many of the challenges that people face.

Faust: Do you think that some of the changes that happened during the pandemic -- certainly the disparities got wider, and in the same token we also got some new tools, which you've written about with telehealth and the ability to access care in new ways -- now that we're "out of the emergency phase of the pandemic," do you think that access in the next phase will have been improved by those things like making it a little bit easier to reach healthcare?

Ndumele: I suspect so. Here where I am in Connecticut, it was I believe in March of 2020, which was the first time that their state Medicaid agency approved telehealth for Medicaid recipients. So we have a whole new set of tools that are available to provide and facilitate access for individuals.

My hope is that we don't go back to business as usual, but we understand and think carefully about how to integrate those tools into clinical care and into practice and into the way that people access care. We understand that many of those tools are imperfect, but they far outpace the access that individuals had prior to the pandemic when we hadn't thought as carefully about innovative ways for people to seek care.

Watson: I agree with that completely. We have a whole new set of tools that I'm very excited about.

We also have so many new challenges. Healthcare providers are leaving the field, we're getting access issues, we're losing nurses, still having problems, and many states still have not expanded Medicaid. You can see the devastating effect on the population health in those states that have not and the ongoing economic instability. I mean, we have a lot of challenges that continue.

Faust: Yeah. The states refusing the Medicaid expansion has always been an enormous question mark for me. It's hard for me to understand that. How do you process that?

Ndumele: With great difficulty. My sense is that the federal government has laid out as many carrots as are available in terms of payment, in terms of cutting red tape. This is largely a political challenge at this point.

Watson: That's exactly it.

Ndumele: And it's difficult to think about the toll of life that is kind of directly associated to political squabbles.

Watson: We live in such strange times where healthcare and true healthcare metrics are being politicized, like COVID, like expansion of Medicare. There are some things that we know will improve human health, but we've politicized them.

Faust: Dr. Watson, I'd like to talk for a minute about, I think we do this similarly in our jobs, melding large datasets and understanding of systemic problems with what we see at the bedside, and do they match. I'm interested in hearing your perspective on that in the past several years through two distinct lenses, one through the lens of COVID, like has COVID changed things in terms of how you feel disparities are playing out at the bedside once people are there, as opposed to if they're not there, which is an access problem or something else. That's the first one with COVID.

Also, I think in this country we've had many reckonings over the years and decades with racism as a problem. But I think in healthcare in particular, I think we finally have said out loud what's been so obvious for a long time, which is that it's not race, it's racism. I think for people like me it took us a long time to say those words out loud. It's not easy, right? Because it's hard to say, "Oh, I could be part of the problem." That's not a comfortable thing to say.

Now that people like me are saying that at long last, do you sense that there is a difference on the ground yet in terms of these questions and how they're playing out?

Watson: Yeah. Those are two separate questions, but I think they're related.

What COVID did more than anything is it's shown a huge spotlight on the disparities that had been there forever. They weren't new. They've been there, but suddenly many people saw them for the first time. It was important just to see it. What we have to do is figure out how to fix them. I mean, we've cataloged them and highlighted them enough, now we need concrete solutions.

At the bedside, what I see is in any given individual interaction in the healthcare system, you don't see these disparities. There aren't people who are walking around overtly racist. That's a good thing. Most clinicians and healthcare providers are doing absolutely everything they can the best they can for their patients.

The biggest problem I see is not the individual racism, it's not even implicit bias -- it's really the structural racism. These are things that are part of our air. We don't feel them, see them and they just exist, but they probably have the biggest impact on the things we see. The things that strike me so much are how if you are a person of color with money, education, and access, your health outcomes are still worse. All of those things can't protect you from some of the structural racism, maybe individual racism that we see. We still have a ways to go.

Faust: For the typical average healthcare worker, what's the thing that we can do to move the ball forward when in reality, I think to your point, one of the biggest problems is not necessarily the difference between how many people get a statin or not, although that's a big deal --

Watson: That's a huge deal.

Faust: But the bigger difference is the social determinant of the structural systems that say why someone has asthma as a child and why they have obesity or diabetes early. How can we, as physicians, operate on that?

Watson: I think one of the first steps is to understand it and recognize it. There are so many things that we can do that we don't necessarily do, and there's so many things we can't do but we can try to make an impact.

For example, I see all the time that we make these great dietary recommendations. Three servings of different vegetables, lower sodium, don't eat out at fast foods, etc. But then we realize it's really hard to think of or even care about what you're eating when you're concerned about whether you're eating. We have to figure out ways to help people get the basics: a safe place to live, healthy food to eat, things like that, which are the entry fee to good health.

Ndumele: Yeah. Just to underscore that point, which I think is a critical one, a lot of this is about awareness, right? This is about global awareness in terms of understanding the scope and scale of these disparities, but also in terms of at the individual bedside. This is about individual awareness. Are we screening for the right things? Are we thinking comprehensively about the things that produce health and how we can improve all of them?

Faust: Thank you both for joining us today.

Ndumele: Thank you.

Watson: Thank you so much for having us.

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