Closing the Gap: Addressing Health Disparities in Multiple Myeloma

Speaker 1:
Our last didactic lecture before we're going to split into our groups is going to talk just for a few minutes about health disparities in multiple myeloma, and then we'll give you a little bit of direction as to what our plan is for the breakout sessions in a little bit. I'm particularly passionate passion about this topic. Well, I'm passionate about a lot of things as you've heard over the last day or two, but I'm particularly passionate about this. But I'm also fully cognizant of the fact that when we start talking about these issues, some people get a little bit uncomfortable, not so much when I'm in California, but nonetheless, this can happen. And sometimes, my wife reminds me on a regular basis.

Sometimes, I'm very good at just stating the obvious. I like to call out the elephant in the room, as it were, and she's so good to me. As you all know, I've married up. I've got a very, very good with Emily. She takes good care of me, and so sometimes it's important for me to just say, "Look, I understand that for some people this topic can be a little bit uncomfortable. On one hand, some people think we overstate the case, other people feel that we may understate the case." I often say even in my academic institution, where I have the privilege of chairing our DEI council, I say, "When it comes to these sorts of issues that they're personal, they're professional, and they're political."

Let's take that third part out and just focus on the personal and the professional, because professional from the sense that it influences the work that we do and the way myeloma is, if you will, conducted in the professional setting, but also very much personal. So, let's talk just a little bit about these disparities. So, first of all, when I see the word health disparities in myeloma, what do we think about? Well, I tend to go with the CDC definition, which is a lot of words here, but I just want to highlight a couple of things. It's preventable differences. That's the first point. So, there are things you can prevent, you can't prevent. There are things you can change, you can't change, right?

I can't change my race or ethnicity per se, but there are things that can be preventable. So, it's preventable differences in the burden of disease, injury or violence, injury, violence or opportunities to note this, to achieve optimal health. They're experienced by socially disadvantaged populations. So, the concept here is what is preventing us from everyone achieving their optimal health? That is the disparity. That's what we want to achieve. Remember, Diane shared with us both our vision and our mission, right? And our vision, we want to have not, not certain privileged groups, but all patients, every patient. We want every patient myeloma to live life to the fullest unburdened by the disease.

And so, that is incumbent on us to do all that we can to reduce that disparity, so that when we talk about health equity, which is also a word that sometimes invokes a reaction, it refers to allowing people to achieve that highest level of their health by eliminating the disparity. So, equity is meant to reduce that. It's not meant to put everybody on the same level per se. It is meant to reduce the burdens that allow people to achieve their optimal health. This has been a theme, hasn't it, since Beth spoke yesterday, that part of even the concept of shared decision-making that we've discussed is not just about choosing the best drug, it's about allowing you to live the greatest life that you can to be truly unburdened by the disease.

And for some people, it's going to be different than others. My optimal health may be different than your optimal health. My definition of what I want to achieve today and what I want to enjoy today will be different than your definition. That being said, there are clearly gaps that we have seen historically that we want to make sure that we address as we go forward. I won't spend a lot of time on this, but what are the drivers of that health disparity?

Well, we can look at things that just affect health in this country in general, whether it's systemic racism, the healthcare system in its design and implementation, and something that we often don't talk about, which are the social determinants of health, those very things that influence us. Most of us in this room just by looking at you, and I don't want to judge people by looking at you, but most of us in this room probably are not going to worry this week about where we're going to eat, right? But as they teach our residents and fellows, when you're having a conversation with a patient and you're talking to them about their next therapy or maybe even going onto a clinical trial, they're not going to hear you very well if they're hungry.

They're not going to hear you very well if they're very anxious about what's going to happen when they get home, because either they don't have a home or they're going through an eviction or something of that nature, things that most of us take for granted. But those very basic things influence our health, the social context in which we live. I was involved with some work in Arizona in individuals, women with breast cancer who were undocumented and how a program was built to try and support them through treatment to be diagnosed, to be cared for, to provide all of the resources for them to go through it. And one of the challenges that came, we said, "Well, we've provided transportation.

Why are they not being able to come to their appointments to be treated?" And having the discussion with many? And they said, "Look, if I get sick today, if I get nauseous when I go home, nobody in my family eats because I'm responsible for cooking for the family." When was the last time I as a doctor really thought about that, that if my patient is nauseous this afternoon, their whole family's going to suffer and that family may be large. That's just giving you one tiny example of the concept of social determinants of health that for many of us in privileged situations, we've not fully understood or experienced.

But then there are the ones that are myeloma specific that obviously we're going to be focusing a little bit more on, which is to say that in myeloma, we have challenges. I commented yesterday that for example, diabetes is often the great mimic of myeloma. And a lot of times, individuals, and there are certain individuals in the country who are greater risk of developing diabetes even by race and ethnicity as we know diabetes is more prevalent, let's say, within the African American, Latino American populations.

And often, that can delay the diagnosis because someone is attributing those signs and symptoms that we keep talking about and raising awareness around the issues of damage to the kidney, of anemia, of fatigue of protein in the urine, of neuropathy, these things that we talk about in myeloma that can also happen in diabetes. The delayed diagnosis, I've commented several times this weekend how often almost every patient in this room with myeloma can tell a story about the delay of their diagnosis. It's not common that someone just gets detected MGUS while they're doing an insurance, a test or something like that. The majority of us have had delayed diagnosis, that's even longer in certain populations.
And really, arguably the most important myeloma driver on this list is number six, which is access. If you've been listening over the last day or two, we've talked repeatedly about how much we've advanced the field of myeloma in the last 20 years. If I had to summarize it, it's in four things that start with the letter T. triplets, which has now become quadruplets of course, transplants, CAR T cell therapy and clinical trials. Those four things have propelled myeloma forward, and sadly, we've documented that there are certain on a repeated basis, groups of individuals who are less likely to have access to those four things.

And then on us as docs and as nurses and as others in the healthcare team, often we don't perform the best in terms of being able to provide what is sometimes called culturally sensitive or competent care, which is to recognize, as I just gave you the example, that's the social determinants of health of your patient might influence their outcomes, or recognizing that patients may have a different approach to health than I might, and that's one of the critical parts of myeloma. I've said it repeatedly, I don't treat myeloma, I treat people. I don't go in there with a soliloquy of this is what myeloma is and this is how you get treated and not listen to the patient who says, "Actually, that doesn't resonate with me.
I'd like to approach it differently." And if we as a medical community don't have that sensitivity to recognize and to listen, I often give the example of a patient of mine when I was caring for him, who we were talking about the potential of going on to a clinical trial, and I could tell that there was just a hesitation with him that was not usual there for the previous treatments he had had, and he's of Native American background. And as I listened and sensed the hesitation, he was shutting it down, and I don't want to ever push too hard, but I said, "Is there another reason why you're concerned about this issue of clinical trial?"

And he explained to me that in his way of thinking, that clinical trials would not be something he would want to pursue until his tribal leader was supportive of it. So, he didn't think it was going to be possible. I said, "Well, why don't we speak to your tribal leader? I'm happy to speak to him and talk to him." And we did. And he actually ended up going on to the clinical trial, and he actually did quite well with it. And I'm not giving myself praise over that, but had I not detected that sensitivity, had I not allowed an environment that allowed him to express that concern, I might've just concluded, "Well, he's not interested in clinical trials obviously. Let's just move on to something else."

That's the kind of a barrier that I think are driver of that disparity. I don't have all the solutions for all of these drivers, but we'll tell you a little bit about what we're trying to do. So, to give you some facts about what I've just described, and I won't read them all because some of them have already been outlined already, but that delayed diagnosis is present in particular within the African-American Latino, Latino-American population. We've commented this weekend already that myeloma is twice as common in the African-American population, that they're less likely to receive those four Ts.

But interestingly, what we know biologically is you might say, "Okay, well if survival is shortened, which we see in number six here, survival outcomes, African-Americans are half of what we see." So, typically a white man or a white woman diagnosed with myeloma today is good twice as long as a same-aged black man or black woman. Why is that? One might conclude and say, "Well, maybe they're at risk of a more aggressive myeloma." But that's actually the opposite of what's true, that you're actually less likely to have high-risk myeloma if you're of African descent, then you are being Caucasian.

It's not a dramatic difference, but enough of a difference to say it ain't the biology that's causing this. And that's why I think number seven of all the things I've said is perhaps the most important, which is we've demonstrated through multiple trials studies and including large VA studies that when actually given equal access to the same diagnostic and treatment algorithm like in the VA system, I'm not saying the VA system is perfect, but at least theoretically independent of race or ethnicity, you should have the same access to both the diagnostic and therapeutic strategy of the VA system. We found that African-Americans actually have as good, if not superior survival with multiple myeloma.

So, what do we do about this? Well, again, I'm not meant to be a lengthy commercial about this, but I just want to tell you very briefly, some of you have heard part of this before so I don't be too repetitive, but we created several years ago at the IMF, what we now call the M-Power program, will play on words M-Power, standing for myeloma power. And the idea is to M-Program communities to change the course of myeloma, to say that this current health disparity gap that we see is unacceptable and let's find ways to overcome it and not to just select out, if you will, one group of individuals, although we've started primarily within the African-American community because that's where the disparity was the greatest.
In fact, I could argue myeloma is the most disparate cancer of all cancers within the African-American community. We see disparities in multiple cancers and multiple communities, but that has the greatest gap. And so, we've sought to address that gap, but there are lots of other gaps as I'll show you at the end of this talk, that we're now doing programs within the Latino-American population and others as we recognize that we want to reduce health disparities across the board. And so, we built it wi

th this 3-platform concept. And again, I could spend hours going through the details, but let me just give you the highlights. Number one is to engage the community.
So, the thought was, let's not just wait until people develop the bone fractures and the kidney failure, just as we were discussing with Dr. Kumar earlier, but let's engage the community to raise awareness about what myeloma is, how it impacts the community, so that people can know those signs and symptoms. So, if they have that signs and symptom and it's persisting, they say, "Well, maybe I need to talk to my doctor about that. Or maybe if I know someone with myeloma, I can direct them to the resources that are available." And doing so, we partner with just about everybody, primarily with the myeloma treating centers across the country.

But we've done programs, and I'll show you quickly in churches, fraternities, sororities, community centers, barber shops. I mean, you name it, we will go anywhere to raise awareness around myeloma, so that the community has that. And this is where I'm particularly passionate about it. I feel that we need to start to switch the way we as healthcare providers and healthcare institutions think that instead of just saying, "I'm here, I'm a doctor, I'm in my office. I wait for someone to get sick to come to me, I need to actually go out into the community to promote health." That's how ultimately we'll facilitate greater prevention. That's how we'll ultimately facilitate optimal health.

It's not just you go there when you're desperately sick and need something. But if I, as an institution, as a provider have that proactive sense in the community, that's how we regain trust, that's how we build trust, that's how we build open, honest communication so that people will feel more comfortable to come in when such time as they absolutely need it. The second part is the educate. You've heard me talk a bit about it this weekend. We want to educate the primary care world about what are the signs and symptoms of myeloma and how do you test for it because of the complexity of myeloma. That's the other thing that makes myeloma complicated.

It's not just that the signs and symptoms aren't obvious, they're more general things like anemia and pain and fatigue. I mean, as we heard from Donna, we're all tired on a regular basis, but how do we make that distinction with myeloma? Not only that, there isn't just one simple test for myeloma. The serum protein electrophoresis, for example, is not enough. That'll miss at least 20% of myeloma patients. So, the testing can be complicated. So, we've tried to simplify it and speak to the primary care world and say, "This is when you should be thinking about myeloma. It's not just a disease of people over the age of 70. You have to think about it in younger individuals in this context, and this is how you test for it."
And then lastly, to enhance the care that patients receive, to open the doors of access, as Danielle beautifully shared to us in our advocacy efforts that we want greater access to therapies, but also that we educate our own individuals. Our amazing nurse leadership board led the way by writing even a paper several years ago now of best practices of nurses when interacting in communities that have historically been represented in myeloma care. What can they do to listen better? What can they do to facilitate better care? How can they be more sensitive to the needs of their community? And similarly, we've done so within the physician community, as I'll show you in a few pictures coming.

So, M-Power in many respects is both a national movement, something we've tried to do, if you will, globally or at least primarily in the US, although we're doing a program in Jamaica next month, but it's also a city by city program because we recognize that no two communities are the same. And we don't want to pretend that we have a cookie cutter response or solution to any city. So, we started primarily in Charlotte, North Carolina. But as you can see here, we've worked in multiple contexts in Detroit, in Tampa, and New York. We do a regular program in New York every year in Richmond, Virginia, and we're going to Miami, Florida later this year, Atlanta, so many other places as you can see here. And the idea is to do programs.

You can see we did one, there was a longstanding barbershop outreach in Indiana that they would have over the course of the month of April that hundreds of barbershops across the state would provide health information to men that came into the barbershop. They never used to include anything about myeloma. Now they do. And so, were we able to reach people that way? We've done programs in New York, Charlotte, I won't go through all the details here, but you maybe show you a few pictures of last year, we did this program in Harlem in New York. We just did one in Brooklyn as well. We've done community workshops in different places. You're probably familiar with some of the Facebook lives that we've done to reach out to individuals.

I've shared with you already that we do a lot of programs with primary care providers. And here we've often partnered with other organizations like the National Medical Association. You're not familiar with the National Medical Association. This is often called the Black Doctors Association. This association was started over 120 years ago when black physicians were not allowed to join the American Medical Association. And they've persisted in their work for over 120 years and have a tremendous outreach in the community across the world. And maybe the crowning glory as I come towards the end here, one of my favorite programs, this is a program that we created three years ago.

We've just had the third iteration of it, where we have worked with medical students primarily from historical black colleges and universities who are interested in doing a project in health disparities. And we partner them with a myeloma expert. Some of you might recognize, some of the myeloma doctors in this picture as well. And we partner them with a myeloma expert to spend about five to six months working on a health disparities project. And then we all gather at the National Medical Association annual meeting, and all the students present their posters at that time. And it's really been remarkable because the concept here is it's one thing to train existing docs, and we're pretty slow to learn, but let's influence the next wave of physicians, right?

Approximately 14% of this country's African-American, only 6% physicians are, and only 3% of us as oncologists are. And so, these students who are remarkable students, we have an incredible number of people that apply for this program, and we can only accept 12 in any given year. But it's really been remarkable to see what they do. And so, we gather at the, oops, excuse me, we gather at the National Medical Association meeting. You can see them here in their poster session. And of course, we try to center so much of this at our M-Power website where individuals can learn more about all the things that I've shared with you today.

Diane shared with you some of the stats, and we're still collecting and adding more and more to this, but it is remarkable how even our M-Program Program independently has had really tremendous outreach across the world in the medical community. We've had the privilege of writing many papers about our program, even about the NMA program, the medical student program I just shared with you. We partner with the National Medical Association for that, and several other papers that our nurses and others have written to make sure that we influence the medical community in this area as well. Going beyond, we have more and more cities that we seek to reach.

I shared with you earlier today our Diversity and Clinical Trials Academy, where we had those patients themselves who have been on a clinical trial to share their experience. So, as I close, you might say, "Well, what can you do?" Well, hopefully this lecture has given you a little bit of a greater sensitivity of the magnitude of the problem, and it can make you think about ways that you can support the program and learn more. Of course, at mpower.myeloma.org and even just being here and listening to Dr. Joe is encouraging to me because I feel your support, but there is so much more work to do. 

We're now going to expand our efforts this fall within the Latino American population, and we have plans to go much further before too long. So, thank you very much for your attention.