Closing the Gap: Health Disparities in Multiple Myeloma & How IMF's M-Power Is Driving Change

Dr. Joe:
I would like to share with you today a little bit about what we've entitled Closing the Gap, which are health disparities in multiple myeloma. And just right off the start, I always want to say sometimes when I raise the terms disparities, diversity, equity, inclusion, all of those terms at times can rub people in different ways. Some people applaud it, some people question it, some people become very upset about it. But let's leave the upset part behind. I always say when it comes to these sorts of issues, they're personal, they're professional, and they're political. Let's leave the politics out of it and let's focus on the personal and professional. And unfortunately, as I'm going to share with you, myeloma arguably is the most disparate cancer in certain populations. And talking about health disparities is a very critical part, I think, of what we do.
First of all, it helps to define it. What are health disparities? And I tend to like this definition from the CDC, and I know there are a lot of words there, but let's just parse through it very quickly. They're preventable differences in the burden of disease, injury, violence, or opportunities, and here's perhaps the keyword, to achieve optimal health that are experienced by socially disadvantaged populations. So three major concepts there. One, they're preventable. Two, it's disallowing people from achieving their optimal health. And three, it reflects the experience of certain socially disadvantaged populations. And that is a very clear reality, sadly, in multiple myeloma, as it is in multiple areas of health. And we're going to talk a bit more about it.
The other phrase that we often use is health equity. And again, as you can see it a bit diagrammatically here, but also from a terminology standpoint, it refers to individuals also achieving, if you will, that highest level of health through the elimination of those disparities that we're going to discuss in health and healthcare. So it's not that there's some perfect standard of health that everybody is trying to reach. It's much more that they are trying to reach their individual best health. And so, it's really meant to be individualizing when we think about this sort of thing.
So what are the drivers of those disparities? Well, I typically put them in two buckets and you can see here I've had them colored differently. There are those that really affect general health. And again, this is sometimes what can irk certain individuals. I'm not trying to cause any divide or controversy, as much as saying that we really want to think about the things that affect people's health, what can happen in the society at large, in systemic racism, in the healthcare system. And very importantly, and something that we often don't talk about are the social determinants of health. What are those social determinants of health?
Sometimes I try to teach, for example, the residents and fellows that work in my clinic, "You can have the perfect approach to shared decision making. You can have the greatest of clinical trials. You can have wonderful educational materials to explain to someone what multiple myeloma is and what their options are. If they're hungry, they're not going to hear you. If they don't feel safe going home that night, if they're anxious about what is going to happen when they get home that night, then that whole conversation is overshadowed." And sometimes we don't think about those sorts of things.
And depending where we are, today we're in a beautiful place here in Los Angeles and we've all been well-fed, if not overfed, but there are times we come to these meetings and there are patients who arrive hungry. And for many of us, we just take advantage of that. We've been having such advantage in our lives, we haven't taken the time to stop and think about those who may not be in such a positive situation. And that influences all of our health, whether it's what are sometimes referred to as food deserts, which we often don't think of. I often joke about the fact that my wife thinks I have an addiction to Costco. Still trying to figure out if I do or not. But I mean, you walk in that place and there is food upon food upon food. It's overwhelming, isn't it?
We think of individuals who live in communities and areas where they don't have even access to a simple grocery store. Their grocery store is the 7-Eleven because that's the only thing that they can reach. And for many of us, we don't fully appreciate the magnitude of that and how it can influence our health in general. Again, that's a whole discussion topic of itself. I just want to sensitize us to that, that it's not just what we see here in red, which are the more, if you will, myeloma related things, the biology of the disease and concomitant comorbidities.
What I mean by that is often other diseases can influence the ability to take care of multiple myeloma. The one I speak of the most is diabetes. Diabetes is often the great mimic of multiple myeloma. Patients often are told, "Oh, your anemia, your kidney dysfunction, your proteinuria, your neuropathy, oh, that's just from your diabetes." When in fact, they may have myeloma. And diabetes is more common in the African American, Latino American population. And often that confounds the diagnosis. The delayed diagnosis is one of the most important things. And we've already discussed a little bit of that already, but that is one of the most important aspects of multiple myeloma.
I noted that the average myeloma patient sees their primary care provider three times with signs and symptoms consistent with myeloma before the diagnosis is invoked. That is even longer, three to six months longer in the African American and Latino American population for lots of reasons, access to healthcare, the confounding diagnoses, lack of trust in the system. There's so many features that lead to that delayed diagnosis.
Number six, and number five and six I'm going to suggest are probably the most influential, is access to these therapies. We have been discussing CAR T and bispecifics and stem cell transplant and clinical trials, all these wonderful things that have so often influenced the survival of myeloma patients. Well, if you don't have access to those things, your outcomes are going to be inferior. And then putting it on me and us as a healthcare team, working with amazing nurse practitioners like Mary and other members of the healthcare team, we at times are at fault as well, that we don't practice the kind of culturally sensitive care that we absolutely need to ensure that we can ourselves be ready.
Because the facts are disturbing. There are many. And I start with number one, which is perhaps the most influential, a Black woman, a man or a Black woman diagnosed today is expected to live half as long as the same aged white man or white woman. Now, a lot of that has to do with general health, but specifically we see the outcomes in myeloma being different. I do believe that we're seeing improvements in this area and the numbers are starting to show that, but historically we look at mortality rates twice as high in the African American community. It's also twice as common. For those of us of African descent, we biologically have twice the risk of developing MGUS, smoldering myeloma, or active myeloma.
Also, African American and Latino Americans are diagnosed at a younger age. When I went to medical school, we were told, "Well, you kind of think of myeloma in the particularly geriatric population." But very often it's diagnosed at a younger age. I had a patient in our clinic recently, a 32-year-old woman who'd gone to three different emergency departments with terrible pain and then she was sort of written off as she was seeking pain medication. She had multiple rib fractures. No one even did a plain X-ray to determine that this poor young woman of course had newly diagnosed multiple myeloma. And so, it can influence the outcomes of individuals. I've already discussed that there's a longer time between the symptoms to diagnosis and the access, which I often call the Ts, the letter T that have triggered so many of the great treatments, transplants, clinical trials, CAR T-cell therapy, triplets are now quadruplets that we use.
Interestingly, someone might, if we stop there, say, "Okay, Joe, well, maybe because biologically you're twice at risk of getting the disease, maybe you just have a higher risk form of myeloma. Maybe African Americans just have more aggressive myeloma." And sometimes we see this in certain diseases. Black men, for example, have a greater risk of developing higher risk prostate cancer, but that's actually not true in myeloma. In fact, we look at the risk distribution, an African American actually is less likely to develop high-risk multiple myeloma.
And very importantly and very reassuringly, the last of the major stats I'll share with you today is that based on multiple studies, including the VA studies, where at least theoretically, if you're in the VA system, independent of race or ethnicity, you have the same access to the diagnostic and therapeutic pathway, we found that actually African American patients do just as well, if not better within the VA system when compared to white patients. So we know, that is going back to our definition, this is preventable. There is a way to overcome it.
And I'm going to be a little bit of a commercial here for a couple of minutes for the IMF. We're at an IMF meeting here, of course, but the IMF understanding this has always been committed to every patient on the planet with myeloma, but particularly importantly to those who have been disadvantaged in the past. I always quote my daughter, she's now just about to turn 21 this week, and they're growing up quickly. But I remember she was 16 at the time when we were having this discussion about starting M-Power. And I said to her, I said, "Lisa, what do you tell someone when someone says that we have to work on health equity or that Black lives matter?" And she said to me, "Well, dad, of course every life matters." She said, "Of course every house on our street matters. But if one of them is on fire, we need to attend to it right away."
And that's the way I think about health disparities very often, is that every single person on this planet with multiple myeloma, I want to help in some way, in some capacity. But when we know that there are those who have been particularly affected by this disease, it's incumbent on us to try and overcome that. And that's what drove us to create M-Power, a bit of a play on words, myeloma power, which is really meant to empower patients and communities to change the course of myeloma, to not just do this at some theoretical academic level, but to get right into the community where people are.
And it was built on these three hinges that you see here. One, to engage the community, the lay public. And I'll show you a few pictures in a moment as I wrap up about where we go to churches, fraternities, sororities, community centers. I'll go anywhere and anywhere to share with people what multiple myeloma is and how it may affect their community. Number two is to educate that primary care world. Dr. Gregory shared with us the importance of ensuring that our primary care partners, where about three quarters of the diagnosis of myeloma gets made, are aware of the signs and symptoms of myeloma and who's at risk of them to shorten that time to diagnosis. And then lastly, to enhance the direct care of patients, to improve access, to navigate their care, to teach us as healthcare providers, what are the best practices for us to ensure that we're providing the best care to our patients?
It's both a local and a national movement. We've had the privilege of going to multiple cities, even more than are listed here, but at the same time, we know we can't have a cookie cutter approach and just do the same thing in every city, because every city is unique, every city is different, and we need the resources and the time and the effort to stay in that city and work. We don't want to just descend on a city, do a little event and take off. We want to be able to have a long-term standing plan that was also described to us earlier.
We've tried to engage certain individuals, who you may recognize, to work with us. I just actually ran into them a couple of weeks ago at the airport. We had a nice chat about M-Power. And here Ice-T met with us in a studio and we did a little gig together. In fact, a video that he created, we were able to put up in Times Square on the NASDAQ screen for the first week of Black History Month, where every 30 seconds, a loop of that video was played so that people could hear more about what multiple myeloma is, how it affects their community. In that first E of the engage, we've gone into the community and one of the programs we typically do every year in New York City is around Juneteenth. And this year we had the privilege of being in Harlem. Some of you will recognize the photo here of Thomas Good, one of our amazing patients who advocates so strongly.
We've also learned that we can't do it ourselves. We try to partner with others. We've worked with Black Health Matters, for example. We did a program earlier in Atlanta. But we've also worked carefully in the education to try and help our primary care providers, as I've mentioned, learn, to learn that these vague symptoms of fatigue, of bone pain, and even of anemia if a hemoglobin has been drawn, yes, they can mean all sorts of different diagnoses. I don't want everybody who has back pain to think they have multiple myeloma, but I don't want to miss those signs and symptoms that can be consistent with multiple myelomas. I've noted the delay is significant within that primary care community and primary care is very often where that diagnosis is made.
And so, we've gone out into the primary care world at all sorts of conferences, all sorts of meetings. In fact, just a couple of weeks ago when we were in San Juan at the National Medical Association, which many of you may know, is an organization that was created over 130 years ago when Black physicians were not allowed in the American Medical Association. And we do a program with them, I'll show you in a moment, and this woman ran up to me and she said, "I'm a primary care provider in Charlotte. And I just want you to know, since you came and spoke to us, I think about myeloma much more and I actually found three cases of multiple myeloma in the last year at early stage because of what you shared with us." And it's one patient at a time, that's how we're going to make a difference. And so, we've created tip cards and various ways to try and educate the primary care world.
And then lastly, in that enhance, one of the things that we believe strongly we can do is train the next generation of doctors to be more aware of multiple myeloma. And so, we partnered with the NMA and their research arm, what's called the Cobb Institute, to create what we call our Medical Student Scholars Program. These are medical students, many of them from historical Black colleges and universities, and we pair them together with a myeloma expert. You might recognize some of these experts here, and they do a project together in health disparities over four or five months. And then we all gather at the annual meeting of the National Medical Association where the students can present their work. Many of these have gone on to be published, to be given awards to. And step by step, of course, I'd love all of these 12 students every year to become myeloma doctors, but wherever they go, whatever they do, they'll understand myeloma more and they'll understand the impact on their community.
You see a few pictures here of the students together just a couple of weeks ago and of the poster sessions that we had with them. You can learn more at the M-Power website. Of course, just go to myeloma.org, everything is there, or mpower.myeloma.org. And lastly, I want to conclude by saying that one of the key programs that we built into M-Power was the Diversity in Clinical Trials program. This is where we said, "It's one thing for Dr. Joe to talk about a clinical trial. It's a lot different when a patient who has been on a trial can share their story." And so, we engage several patients from historically underrepresented communities to come and share what their experience was like to be on a clinical trial and what it meant to them.
So let me conclude by saying health disparities are sadly prevalent across all diseases, but particularly in multiple myeloma within the Black community and within the Latino American community. Knowing those signs and symptoms, those very basic things are the message that we bring to the general community and we want to bring to them the truth that the International Myeloma Foundation is there for them and can help them if they know someone with multiple myeloma. We do this through our M-Power program, as I've described, that engages the community, educates the primary care world, and enhances the care of patients.
What can you do today? Well, hopefully this has made you a little bit more aware of the concepts of health equity, of the concepts of the disparities in multiple myeloma, and you can look at opportunities. We've been discussing doing a program here in Los Angeles and in multiple other cities across the country. And support the M-Power movement. Look us up, read about it, learn a little bit more, because there are so many that can benefit from it.