Multiple Myeloma Podcast

Disparities in Multiple Myeloma: Exposing the Problem and Paving a Path Forward

Joseph Mikhael, MD; Brandon Blue, MD

Disclosures

September 06, 2022

This transcript has been edited for clarity.

Joseph Mikhael, MD: Hello. My name is Dr Joseph Mikhael, and welcome to the Medscape InDiscussion: Multiple Myeloma. I am a professor at the Translational Genomics Research Institute and the chief medical officer of the International Myeloma Foundation. Today we're talking about a topic that is particularly dear to my heart for many reasons. Much of the work that I do is in the area of disparities in multiple myeloma. Being of African descent, this is a personal issue to me as well. Furthermore, I have the privilege today of interviewing and spending time with not only an eminent myeloma doctor in the field but also someone who's become a very good friend of mine, Dr Brandon Blue. Dr Blue is an assistant professor at Moffitt Cancer Center and focuses on malignant hematology and multiple myeloma, especially in the areas of transplant and cellular therapy. So, Brandon, it's always good to have you with me and I really appreciate your joining me today.

Brandon Blue, MD: Thank you so much. Happy to be here to discuss something that's near and dear to my heart, something that we do every day, and happy to share with the masses.

Mikhael: Excellent. Well, it's not a surprise that the whole area of disparities in medicine — or frankly, in life — has really been a hot topic over the last several years. The Black Lives Matter movement and many other things have hopefully shone a light on a subject that has often been pushed into the background and not been fully appreciated. It's something in the myeloma field that we have been talking about for many years because of some really important facts. I just want to share a couple of those facts to kick off our discussion here today, Brandon, that I know are particularly important to the discussion and hopefully important to our audience as we think through this.

One of the reasons why we've always focused on disparity in myeloma is because there is particularly profound disparity within the Black community in particular. We see this in multiple areas, but in particular in multiple backgrounds. We see, for example, a disparity in the Hispanic community, in the uninsured, and, paradoxically, in very young patients with myeloma, but in particular within the African American community.

I reflect on that disparity with a few key facts. Fact number one, myeloma is twice as common in this population.

Fact number two, myeloma presents differently in this population, in that the average age of diagnosis is 5 years younger. When we think of myeloma being a disease where the average age is about 70 years or so for diagnosis, it's actually 5 years younger, about 65 years, within the African American community.

Fact number three, that we're going to spend a lot of time talking about today, as we know sadly and unequivocally, is that access to therapies in African Americans is significantly reduced; that is, [access] to triplets, to transplants, to trials, "the three big Ts" as I call them. With you being an expert in CAR T [chimeric antigen receptor T cell therapy], we're going to try to add a fourth "T" to that … even access to CAR T cell therapy [is reduced].

Fact number four, even before we get to access to therapies, we know that diagnosis is delayed within the African American community, more so than within the White community. This is a problem across all of myeloma, but particularly in this population.

Finally, fact number five, which is maybe the one that gives us hope in all of this discussion, is that we've seen from multiple studies that when African American patients are given equal access to therapies as White patients, we know that their outcomes can be the same, if not actually better. So, it's not that there is a more aggressive biology [at play] here. In fact, when given equal access to therapies, we know that patients could do so much better.

That is the quick background, these five big facts. Brandon, let's dive into, first of all, this issue of diagnosis and delayed diagnosis. From your estimation — I know obviously we're myeloma doctors and are often not involved in that very first phase of diagnosis, meaning when people first present with anemia or back pain or renal insufficiency — what is your take on why this is such a disparity within the African American community?

Blue: Unfortunately, myeloma falls into the realm of what they call a rare condition. And, unfortunately, when anything is rare, it just doesn't get the limelight of some of the more common cancers such as breast cancer, lung cancer, prostate, and even colon cancer. But a lot of folks, they come to me with a diagnosis of multiple myeloma and have never even heard of it and really don't understand what it is.

That's the first problem, because if ladies or guys feel a lump in their breast, they go seek medical attention. Or if, unfortunately, you see blood in your stools, you seek medical attention. But if you have back pain, you really don't seek medical attention a lot of times. Especially if you talk about certain communities who have a less chance of going to see a primary care doctor in the first place. A lot of times, for things like back pain and fatigue, we try to "tough it out." Unfortunately, that then leads to delay in diagnosis because what should be treated with chemotherapy is unfortunately just treated with Tylenol or ibuprofen.

What we need to do as a community is really educate people as far as early detection or even prevention of some of these things. As you know, multiple myeloma has a lot of precursor conditions, such as "smoldering" or even what we call MGUS [monoclonal gammopathy of undetermined significance]. If we can catch one as a precancer, then that's even better than catching them once they become full blown. It really talks to us working not only from a big academic medical center, but also those folks in the community and the primary care doctors trying to figure out a way to identify a population of people who are so at risk of developing this down the road that we catch them before the bones break, before the dialysis is needed, before they need blood transfusions. One of the key things that we can talk about are ways to do that.

Mikhael: That's fantastic, Brandon. You're hitting on such an important point. People don't walk into the office with a sign on their head that says, "Hey, I've got myeloma." There's no simple connection like we have for breast cancer or colon cancer, that tend to be a little bit more obvious. So, let's dive deep into those classic signs and symptoms that are so vague.

For example, someone comes in with a little bit of anemia or someone's got back pain or someone's got a little bit of protein in their urine, or maybe they're getting some numbness and tingling, or a little bit of neuropathy. All of those things can speak of many other diagnoses and, especially within the African American community, it can speak to diabetes. This is one of the great mimics that lead people to say, "Oh, that's just diabetes," or they think the symptoms are just the way they are without pursuing it further. A big part of this is recognizing that this could be myeloma, especially in that highest-risk group. I often give talks titled, "Could my patient have a plasma cell disorder?" or "Could my patient have myeloma?"

But then it's also the testing too. Just in that first screening, the primary care docs aren't doing the marrows and all the "fancy schmancy" tests we do as hematologist-oncologists, but if they could at least do the serum protein electrophoresis, the light-chain measurements, those key CBC [complete blood count] and biochemical profiles, that would really go a long way. That's often, as you said, a challenge in a population that may not be going to primary care as much.

It's incumbent on us as hematologists and oncologists as we build our networks with primary care docs to help in the education of the greater incidence of myeloma. Education, as in, how do we do the right tests and when do we order them? Things like a serum protein electrophoresis and light-chain testing. That's going to help overcome some of that disparity as we go forward.

Blue: Honestly, as far as primary care doctors are concerned, there are two important tests that they could potentially use as part of unofficial screening. A lot of times, as we know, abnormal immunoglobulins build up when people have this condition. How we translate that into bloodwork is total protein. If patients are coming especially from a high-risk group of people, typically that total protein number gets higher and higher, especially as they develop more and more plasma cells. So that's a very simple test that a primary care doctor can check and say, "Hey, I have this African American patient, I haven't yet checked the total protein and I don't really know what that would be." Check that, too, to see if it's high. I don't even necessarily need you to check serum protein electrophoresis (SPEPs) and the light chains and those kinds of tests. If there's enough of a concern because you say, "Hey, there's a high total protein, can you do the next steps?" …I'm okay with looking at that and having us clarifying, because as you know, between non-secretory myeloma and secretory myeloma, sometimes it can be very nuanced.

Number two is albumin. Many primary care doctors are not checking albumin. As we know, kidney disease is one of the major problems with this condition. As you see that albumin go from 4 to 3.5 to 3.0, maybe consider myeloma to be one of the reasons for that. Again, if you take a high-risk population of folks where you can say, "Hey, this is not what we call less likely, but actually most likely." Considering myeloma will never be at the top of the charts — it'll never be higher than high blood pressure, it'll never be higher than diabetes — but for sure, it should be part of rounding out what we call the differential diagnosis and, as internists and as people who take care of people from all walks of life know, a differential diagnosis is really what saves lives. You have your thoughts on what's the most common diagnosis. But those other things, what we used to call "zebras," may not really be zebras in certain populations. They could be, in fact, exactly what's happening.

Those two tests, a total protein and an albumin, can spark a little bit of change to say, "Huh, there's really something happening there. Let me refer these guys over and let them do some more specialized testing."

Mikhael: That's extremely helpful; thank you for that, Brandon. That's going to really help, obviously, primary care docs who may be listening in, but even for us as hematologists/oncologists to give that guidance because that is what's going to save lives.

We had a great podcast with Dr Irene Ghobrial talking a bit about screening. When we screen for breast cancer and colon cancer, we take into account a lot of the high-risk features; for example, having a family history and their age. Similarly, we're starting to move in that direction here as well.

So, let's dive into topic number two. We talked a bit about the diagnostic sphere; now I'd like to talk about access. This is arguably the greatest area of disparity within the African American community in myeloma. As I intimated from the start, Brandon, we talk about the three big "Ts," these three different approaches that have actually improved the survival in myeloma. One of the facts I didn't share at the start was that myeloma is one of the few cancers where we've seen a massive improvement in survival in the last decade, which is wonderful. But sadly, we've not seen that within the African American community to the same degree. For all of this advance and survival in the White community, we've only seen about half of that advance within the African American community. We think a big part of that has to do with access to triplets (or the three-drug combinations), transplants (stem cell transplant still has a role), and clinical trials that we know can appreciably help people. Now I would argue that we can add a fourth "T" to that because we have recent data, including some of the work that you've done, in looking at access to CAR T-cell therapy. I know that there's no simple answer to the access issue, Brandon, but I'd love to know your thoughts about this access problem and maybe even some of the things we can do to help overcome it.

Blue: Really, the thing that sets multiple myeloma up differently is that it is a rare condition. A lot of times with rare conditions, you need specialty care. You can't get a transplant in rural America; you can't get a transplant in rural Florida, or rural California. Typically, you need to go to big major centers.

I would say the number one thing is that we have to work together as a team. There's no way that myeloma gets treated in silos, because if we do, unfortunately, we see that there is inefficient care. We have to rely on our community oncologists to take the patients in and then to assess them and say, "Hey, I'm not sure if this person needs a transplant or not. Let me send them down the road." Then it is on the patient, as well, to say, "All right, this doctor sent me for something that I'm not really sure about. I still need to go hear more about it." What I call look underneath the hood, kick the tires, and really see is this something that's right for me? Right now, we're in an era of what they call personalized medicine, and that's one of the things that we try to do for myeloma. But if you don't see myeloma every day, then what you should do is partner with some of these academic centers that specialize in myeloma. I see myeloma every day. Each patient is a myeloma or amyloidosis patient, so the expertise that comes along with that is a lot of familiarity of what to give, when to give it, how to hold, how to dose reduce…some of those common things that are associated with this. A team approach really is the best thing that we can do to be successful at treating this disease.

Mikhael: I appreciate your thoughts here. Your notion of us not looking in silos is so important. I've often said, Brandon, when we look at the whole spectrum of how care is ultimately delivered in this country, from the regulatory authorities, industry, the healthcare systems, right down to the individual practitioner — everybody's got to be a part of the solution.

If we go a step further, maybe the most important step is embedding in the community itself. In the work that I do at the International Myeloma Foundation, which you have assisted with and continue to assist with, we work with M-Power Charlotte, where we are trying to empower patients and communities to change the course of myeloma. The course of myeloma and this disparity that we're talking about today is not acceptable and we have to change that. A lot of it is getting right down into the community. It's one thing to have, as you mentioned, these large academic institutions doing great initiatives. But what are we doing in the community, in the barber shops, in the community health centers, in rural areas where we want to break down the myths around cancer? We want to rebuild much of that trust that has been broken. What are your thoughts on that, Brandon? How do we reestablish that trust in a more general way, as well as with specific individual practitioners? How do we reach deep into the community where it's not like someone is trying to come in and rescue a community, but rather to build an infrastructure within it to support them and an understanding of myeloma so that when people do have some of these signs and symptoms we've talked about, they can go to a place and figure out, "Do I have myeloma or not?" And if they know someone with myeloma, how they can best support them?

Blue: Trust is a big issue, whether you are talking about multiple myeloma, whether you're talking about heart attacks, or whether you're talking about kidney disease. Really being connected to the healthcare system — for a minority population — is something that a lot of us are very leery about. So, the question that you asked is, how do we fix that? How do we make things better?

Number one is that we have to acknowledge that there is a problem in our healthcare system. A lot of times people try to make reference to things like Tuskegee and some of those things that, for historical purposes, are important. But we have to remember these things are still happening today. That's not something that was a "one and done." People go to the emergency room all the time and say, "Hey, I have back pain." But they are told to "take these Tylenol and go home." And the patient then says, "No, I've been to four ERs, this has been happening for a year. Something's wrong." And then they say, "Hey, go home." How many times do you hear that? That happens all the time. Or it might be situations where the patients are saying, "Hey, I'm noticing bubbles when I urinate" and thinking that that is something different than what it should be. I think that recognizing and saying, "Hey, we understand that there's a problem," right? And say, "We're trying to make an effort."

People want to be reasonable, especially people with cancer; minorities are no different than anybody else. People are nervous and scared when they get cancer, and they want somebody to trust. They want to make sure that you have their best interests at heart. And I think that if we just validate someone's concerns, that's a great first step — just saying, "Hey, I know what has happened, I know what is happening, but I'm on your side, we are on your side. Not only that, we are partnered with the whole team. We have a team of people whose only job is to make sure that your cancer gets better. I'll be in charge of the treatment, making sure that that gets started. Then I'll send you to a place down the road to get a stem cell transplant. They'll help you with that and if the disease comes back, we have CAR T." This can really set the road to say, "Hey, this is our goal, especially as doctors, as researchers, as scientists. Our job is to help the people. Our job isn't to help the pharmaceutical companies or anyone else. Our job is to make people who are sick better. And actually, our job is to try to prevent those people from becoming sick." We have to go in there with that type of mindset. Otherwise, we fail, and people can sense the realness about you; we can't half do it and half step it. If we just tell people honestly upfront, "We are here to help you," then the trust is bound to happen.

Mikhael: Brandon, I could listen to you all day. I just so appreciate your genuine nature and the thought around this. You're absolutely right.

And actually, this is a perfect segue into our final segment here to think a bit about how this affects us in the workplace. Are we recruiting and engaging people from the earliest days to be interested in medicine, to be interested in myeloma, a disease that affects the African American community more fully? Then, at the other end of the spectrum, are the hematologists/oncologists. What can we do more? I can imagine a White oncologist listening to this conversation and saying, "Well, what can I do? What do I do?" But let's start on that first part of it. Tell us just briefly your story of what brought you into this field and how you wanted to give back to your community. It always touches me when I hear you say this.

Blue: I am the first doctor in my family. I actually didn't know what I wanted to do, but my mom was like, "Hey, you're smart." So I said, "All right, I'll do something in computers." I don't know — I'm good at math and science, so I thought computers would be the way to go. And then I used to get in trouble in school for talking. So, I was like, "I talk too much to have a computer-based job. I can't sit at a desk and just do number crunching."

That's when — honestly, just through divine intervention — I lived across the street from a nursing home and I got a job across the street at this nursing home in the kitchen; I was cleaning and I was making people's meals. But then my inquisitiveness [kicked in and] I asked, "Well, what is a renal diet like? I don't even know what this stuff is?" So, I started to take trays, to people and I started to interact with them and hear their stories. I started talking to the nurses, the doctors, everyone at this nursing home. And I thought, "I can do this." So I said, "I'm interested in medicine." And then I said, "All right, I want to see all walks of life. I don't want to see just kids or just see adults. I want to see everybody. I don't want to see just the rich and I don't want to see just the poor. I don't want to see just men or just women." And cancer is really something that unfortunately hurts CEOs, it hurts janitors, it hurts the uninsured, and it hurts the millionaires. I knew that that was really, for me, the way to go.

I was fortunate enough to come back to Tampa Bay, which is where I grew up. And right now, I'm taking care of people who are past principals of mine, classmates of mine, people who go to church with my parents — you know what I mean? This is my community. So, when I say, "Hey, this is a problem in the African American community," I'm not talking about something that I heard — this is something I know. These are people who I live with. These are people whose phone numbers were in my phone before I became a doctor. These are my community; these are my people. That's why I thought that was important.

So how do we cultivate more Brandon Blues down the road? The thing is that I didn't get here by myself. There was a pipeline in process where people took me aside and said, "Hey, you're a budding young, smart person who's motivated and interested. Let's make sure that you hold on to these things and continue to be engaged." That's really what we need are these programs and there's so many programs that are out there, but I just think they just need to be bolstered up a little bit to follow through. It's okay to start a program, but for it to be a successful pipeline, you have to have something at the end of the road.

And then to answer your second question on what we can do? We need as many allies out there as possible. I would say you don't have to be a minority oncologist like myself to be treating people in the African American community because we see people from all walks of life and, unfortunately, we don't do as good of a job bringing minorities into our centers. The majority of the patients I see are not African American. I would say that if you are in the community and you take care of Hispanic patients, African American patients, people who have been marginalized their whole lives, the one thing to do is to just have empathy. Just know that this person's life may not have been similar to yours, and this person's beliefs might not be similar to yours. The things that you grew up knowing your whole life, this person may have never even heard of. To have that as a mindset and say, "This person is different" and to then say, "How can I still help them?" That takes a special notification and listening ears. All people want to do is to have someone to listen to them and understand that they're for them.

That goes back to my original point. If we're empathetic, if we're good listeners, then we can be great doctors and continue to move the needle forward. Because one thing about minority communities that I can tell you is that we talk. So, if you're a good doctor and you're taking care of that person, you may find they are telling their church members, they are telling people at the barbershop, and they are telling people in their family. So, you might be taking care of a whole family of people if you really have that kind of listening ear and say, "Hey, I'm here to help you" and people can recognize that.

Mikhael: Well, Brandon, you are a talker, but you're a great talker and I could listen to you for hours. You captured so many elements within that that I don't want to say anything else. You've described cultural competence — that people talk about as some theoretical thing — in a real way. We really appreciate it, and I want to thank you for joining me today.

This has been an extraordinary conversation. We've thought about so many different elements of health disparity in multiple myeloma: the delayed diagnosis, access to triplets, transplants, trials, CAR T-cell therapy, and indeed how this directly affects the workplace and how we need to build that pipeline that you describe to encourage more people to come into this field, and how we can deliver more culturally competent care in a way that is genuinely going to help people. You go back to why we went into medicine, right? We went into medicine to really help those who need the greatest help.

Thank you so much again, Brandon, for joining me. This has been a marvelous conversation. We really appreciate all those who have listened to this and the other podcasts that we created in the series, and we trust it will be helpful to you as you care for your patients. Thank you very much.

Blue: Thank you for your time today.

Resources

Multiple Myeloma Awareness and African American Disparities

Multiple Myeloma

International Myeloma Foundation

International Myeloma Foundation Launches "M-Power Charlotte" to Improve Outcomes in Multiple Myeloma, a Cancer That Disproportionately Affects African Americans

The Tuskegee Timeline

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