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Published on December 22, 2020
The Effect of Racial and Socioeconomic Health Disparities on MPN Patients
How do racial and socioeconomic disparities affect myeloproliferative neoplasm (MPN) patients and the care that they receive? What has research shown about the influence of race on clinical outcomes in MPNs? What should doctors know about these disparities in order to provide the best possible care?
In this segment of Answers Now: Facing MPNs, host and patient advocate Ruth Fein is joined by Taja Shabazz, MPN patient and founder of myeloproliferative neoplasm advocacy group Invisible To The Eye, Inc., Dr. Irum Khan, MD, Assistant Professor of Clinical Medicine at the University of Illinois Cancer Center, Chicago and Dr. Karen Bullock, Ph.D., Professor and Head of the School of Social Work at North Carolina State University. Together they will cover these important questions and offer information to patients, including new clinical research on racial and socioeconomic disparities in MPN outcomes.
This program is sponsored by Incyte and is produced in partnership with the MPNRF. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.
Transcript | How Do Racial and Socioeconomic Disparities Affect MPN Care?
Ruth Fein: Hi everyone. I'm Ruth Fein. I'm a health and science writer. I'm a patient advocate and your host for this installment of the series we're doing on Facing MPNs.
Today, we're focusing on how racial and socioeconomic disparities affect MPN patients. Taja Shabazz is the Founder of an MPN advocacy and education foundation called Invisible to the Eye, Inc. She's joining us from the Cincinnati area. So Taja was diagnosed with polycythemia vera when she was just 23, and I have to add she's a new mom of a baby girl, just three and a half weeks old. So, congratulations, Taja.
Taja Simmons: Thank you so much.
Ruth Fein: Another special guest today is Dr. Irum Khan. She's Assistant Professor of Hematology and Oncology at the Illinois College of Medicine in Chicago. Also joining us today is Professor and Head of the school of social work at North Carolina State University, Dr. Karen Bullock. Dr. Bullock has more than 25 years of clinical practice experience in mental health and aging with expertise in oncology and healthcare disparities.
Taja, I'm going to start with you. You aren't just a patient advocate. You are a young black woman with a rare disease. Most commonly diagnosed in a person in their sixth, seventh, or eighth decade. There's a lot to get your head around there. So, what has your experience been like, first being diagnosed at such a young age, then trying to find a specialist and a care team that understands where you're really coming from?
What is Your Experience Being Diagnosed with an MPN at 23?
Taja Simmons: There has been several boundaries. It's definitely been an interesting process in regards to having polycythemia vera. I've experienced a lot of different things, I would say, with my condition, one would be the unknown. The unknown meaning, when I was diagnosed with PV, there was a lot of information that was given to me, but not really.
So, when I first was diagnosed, my doctor gave me a handout or printout that he found on Google, and he shared that with me. And he stated, "You have cancer." Is what he told me when I was first diagnosed, "And you may have about 15 years to live." And from that instant being 23, mind you, in my last year of college, the conversation with him was like, "Okay, so do I need to start making my bucket list now? What does this look like for me long-term?” And he really couldn't tell me. His conversation was, "This is what we have. This is what we can do. And then this is what I need to do on my end," which is he felt that he needed to reach out to other physicians in regards to try to manage my care because he stated that he wasn't really familiar with polycythemia vera when it related to someone in my age.
So, the anxiety, the pressure and the things that came along with that when you have a physician who isn't really knowledgeable in the condition that you have, and then the anxiety of being a 23-year-old that's diagnosed with something, when you go to the internet, or if you go to some kind of website, there's not much information, it's maybe a small excerpt and the information that was given to me at that time was very little. So it was an uncomfortable experience, and a lot was actually thrown at me my first year of being diagnosed.
What Was it Like Trying to Find Reliable Information About Polycythemia Vera?
Ruth Fein: How many specialists did you get through before you had a proper diagnosis with good information?
Taja Simmons: Well, we're still at that point. So I've actually seen... I probably went through four physicians to where I'm not even comfortable in regards to them managing my care. I still feel as if I have to be two steps ahead of my physician when it comes to managing my MPN and even birthing a new baby. That process, in general, was overwhelming and just a really hard experience just because of the unknowns as it relates to MPNs. And as it relates to my physician, being able to manage my care, they were totally against it, like completely against it. They didn't think I was capable of doing so, and they didn't think it was safe for me to have a child.
So, it took a little bit of my knowledge. And also, my husband, who also came with me in regards to my appointment, kind of getting them on board with us having a child.
Ruth Fein: Dr. Khan, I'd like to pull you into the conversation as we start to talk about research. You recently conducted a study that shows that for the first time, race can influence, or the first time we know, race can influence clinical outcomes in myeloproliferative neoplasms. Tell us a little bit about that study. What did you find?
According to Research, How Does Race Affect Clinical MPN Outcomes?
Dr. Khan: So, our question was simply to see whether patients should be managed differently based on their ethnic, racial background. And what we did find was that some of the complications, including clotting, as well as bleeding, which kind of collectively we call vascular complications. So those were significantly higher in patients who are either Hispanic or non-Hispanic black. And similarly, the bleeding complications also, the bleeding difference was really largely driven by the non-Hispanic black population rather than Hispanic.
So just lumping everyone as white versus non-white isn't exactly right either. I mean, we really have to look at Hispanics as a separate group, ancestry the genetics are very different. And a lot of things play into clotting complications, not just the clone of the disorder in your bone marrow.
Ruth Fein: It was one of your conclusions. And the conclusion was actually that your study highlighted the need for greater representation among non-Caucasian patients in studies.
Dr. Khan: A lot of these clinical guidelines about how we stratify patients in terms of their vascular risk, which in the immediate short term for a patient with polycythemia vera or essential thrombocytopenia, is the most immediate short-term complication that they need to consider. And a lot of those prognostic risk factors, while they've been validated in thousands of patients by this time are largely Caucasian patients. A lot of this data is out of Italy. A lot of it is out of Mayo and the Olmsted County. And the issue is that the representation of non-white patients is pretty limited.
So independent validation of these markers in a group of patients of non-white ethnic, racial background would be important because perhaps they are at increased risk. Perhaps there are additional prognostic markers that need to be considered for these patients, and perhaps our threshold to treat them with treatment to either lower their blood counts or to inhibit their platelets, or clotting factors may be different based on what we find. I mean, these are all ifs, but it has to be done to kind of either prove or disprove it.
What Are Health Disparities? How Can They Affect a Patient’s Treatment Journey?
Ruth Fein: Doctor Bullock, I'd love to pull you into the conversation. Taja was speaking about her own experience and it being frustrating and particularly stressful, was her description something you hear often?
Dr. Bullock: I do actually hear it often for a host of reasons. As I listened to Taja, in particular, talking about the difference in age cohorts and being a young person diagnosed with an illness that most often people think is an older person's illness if you will, and then people react and respond differently when they have these preconceived notions and ideas about, what does illness look like as Taja has mentioned? And I think that a number of the factors that Taja has spoken about and what I often hear patients refer to are complex because there are in some ways cultural differences in way in which we experience the psychosocial dynamics of our illness and care, but also above and beyond the cultural issues are the social issues and the psychological issues, how do we cope and people cope differently.
So, I think it's a very complex matter when we try to sort of drill-down and understand how each individual experiences and lives with an illness differently.
Ruth Fein: So when we talk about something like psychosocial care, what exactly is that as it relates to what we're talking about, whether it's the diagnosis or the treatment of a serious disease?
Dr. Bullock: So psychosocial care, in particular we in social work like to think of it as person-centered holistic care. We are aiming to treat the whole person. And so we are interested in one's emotional wellbeing, psychological wellbeing, but also the dynamics that may be environmental as well. Not just what a person is experiencing psychologically, but what's happening around the person. And in this psychosocial care, of course, we have structured assessments that we engage in, but we must be flexible in the way we approach assessments because individuals, as I said earlier, experienced illness and wellbeing differently. But essentially the psychosocial care is aiming at treating the whole person in the environment.
Taja Simmons: So speaking with Dr. Bullock - stating the psychosocial. So my psychosocial, when I was first diagnosed, my thought process in regards to even being a patient or a patient advocate was, "Okay, how do I get ahead of this? And how do I identify not just as having an MPN, but being able to throw the information that I receive and also the information that I go and get from different physicians?" And things of that nature. So I wasn't, I guess, what they would say as a norm patient who felt, "The woe is me, what am I going to do? Is this the end of life type of conversation?" And that wasn't what it was for me. Me it was like, "Okay, there's not enough information here for me to even be able to feel comfortable to navigate through life in general."
What is Cultural Competence in Healthcare?
Ruth Fein: Dr. Bullock, what does culturally competent care look like? And what happens when patients aren't getting it?
Dr. Bullock: Well, cultural competence has to do with the development of a set of skills that enables a clinician or any other provider to be able to effectively navigate the cross-cultural dynamics of care or of the relationship. And it requires one to gain knowledge, awareness. We need to really assess our attitudes about differences, because oftentimes as a care provider, we're operating from a very ethnocentric approach. In other words, if I've learned that this is in the best interest of the patient, then I want my patient to do X, Y, and Z. Sort of like Taja mentioned that her doctors or providers weren't supportive of her having a baby, they didn't think that was something she should do.
So oftentimes, as providers, we have been educated and trained by a sort of a Eurocentric ethnocentric perspective. And we need to gain other skills and knowledge that enables us to be able to what we call in social work, meet the patient where they are, and allow the patient to educate us about what has worked well in their lives. How do they take care of themselves? How did they care for themselves prior to the illness?
What Can Institutions Do to Address Racial and Socioeconomic Disparities in MPNs?
Ruth Fein: What can institutions do better or actually what can our blood cancer and our MPN communities do better? I know that your clinic is pretty much a model for what a lot of institutions can do better.
Dr. Khan: I think we can learn a lot from the solid tumor world where for example, in breast cancer and colon cancer, and prostate cancer, there's a lot of work in the disparities area and a lot of strategies that I find interesting. And I actually often talk to my colleagues and the social workers that work with them. Things like distress screening, sort of, we all have electronical medical record.
So, in terms of identifying barriers to care at the very outset, our electronic medical record has that built-in, and you can flag patients very quickly that are struggling with things that we wouldn't even have delved into, but we're kind of in a sense geared in that direction by the medical records. So, I think things like that are helpful to screen for the stress of this sort that we don't really think about. We tend to be kind of go straight to the medical problems. So I found that that's been a helpful way to kind of test the waters.
I think that in terms of larger organizations like the MPN Foundation, I think one of the things that… identifying kind of gaps in the knowledge and trying to fill them, our study was a small study. But I think that larger, bigger, broader studies where we're following patients out prospectively, not like sitting here and looking backward but really moving forward in time with them. And these studies take time and a lot of resources, but I think they're very important because then you can really try and weight them and make sure you have adequate representation. You're not just sort of starting out with a pre-made sample.
So really design them to statistically answer these questions and kind of go into detailed engagement with patients, whether it's quality of life things. There's definitely increasing recognition that patients with polycythemia vera and essential thrombocythemia have a lot of symptoms. And the MPN symptom assessment form is a nice tool, at least for us to ask these questions and make sure that we address them with each visit so we can identify perhaps subtle things that, like Taja says, sometimes what the patient's thinking and is bothering them is really not what we're thinking. And so, kind of to bridge that gap.
I think at least that's one tool that's well studied and validated and making us recognize that people may be a lot more symptomatic than we think, and the symptom cluster varies from patient to patient. And again, will kind of help us tailor the conversation, whether there's racial differences in symptomatology is not yet known, but I think an important question.
Lastly, I think Taja’s unique situation, I think highlights a point that actually when I was doing this work, we did look at younger women and pregnancies like Taja mentioned, she's not the typical age group. And so, there's really very, very little data about pregnancy and MPNs, and I was really struck. And our handful of patients was all, and a few case reports and a case series are kind of all we had to go on. So, I think, perhaps dedicated studies using platforms like this to kind of maybe sort of crowdsource this information, or at least understand and individually kind of follow patients out through pregnancies and really see what is the best way to handle this, because Taja is right. I mean, you shouldn’t have to change your life or your life goals based on a dearth of knowledge. We should fill the dearth.
Ruth Fein: Taja, you obviously had to advocate for yourself quite actively. And then, at one point, at whatever point, you decided to advocate for others. And I know you have some questions of your own that you would like to ask these two guests. So go ahead, kick it off from here.
Taja Simmons: Yes. So my first question would be, what do you feel is the biggest issue within the African American communities as it relates to MPNs?
What Do You Feel is the Biggest Issue Within the African American Communities as it Relates to MPNs?
Dr. Khan: I have a number of patients that I've taken care of over the years, and being in a minority-serving cancer center, a large number of them are African American, I have not found sort of unique treatment challenges in these patients. I think in terms of disease manifestation or presentation or symptom clusters, I don't think that there are marked differences. I do think that certainly, the bleeding and clotting risk seems to be a little bit higher, and that's kind of doing the research and analyzing the data.
I have not changed my practice because of it, because these sort of retrospective studies where we're looking back at a group of patients and trying to tease out differences are more hypothesis-generating where you're like, "Okay, there's a difference we should see if this actually means something," and then really look kind of moving forward and seeing, taking equally matched patients and really kind of following them out over a number of years if there's truly a difference.
But the retrospective data would suggest, again, clotting and bleeding disorders may be increased in non-Hispanic white as well as Hispanic patients. And that includes clotting and bleeding. So, beyond the traditional risk factors of prior blood clots or age greater than 60, which are kind of, the ones we think about largely, there may be other things playing in which may be related to other biologic factors that we have to explore.
Is Access to Healthcare and Lack of Resources a Substantial Issue for MPN Patients?
Taja Simmons: Do you feel that access to healthcare and the lack of resources is a huge issue as it relates to MPN patients?
Dr. Bullock: Absolutely. And just speak broadly in general with a serious illness, many people, especially an over-representation of people of color, do not have health insurance. And when you don't have health insurance, you are less likely to be getting preventative care. And as you mentioned, Taja young people aren't necessarily going to get preventative care or checkups and things of that nature, even when they have insurance. So, if you factor in not having insurance, then that timeline gets extended even further and to middle adulthood and late adulthood, that until some people reach the age of 67 and can get social security, they don't have health insurance. They either don't work in jobs that provide health insurance.
We have many people in this country who are working in jobs every day that where they are not able to pay into a health insurance plan and are maybe working in conditions that are environmental toxins, et cetera. So yes, absolutely, the lack of health care can be a significant factor in whether individuals will be diagnosed and certainly whether or not they will receive the appropriate treatments.
Ruth Fein: Dr. Bullock, do you have any parting thoughts for us today and particularly in the hopeful category?
The Importance of Advocacy in the MPN Community
Dr. Bullock: I think the advocacy that you're engaged in can make a difference as well because we know that there are many, especially African Americans who are not going to participate in clinical trials, and we'd like them to, but we know what many of the barriers are. But to the point that Dr. Khan is making that, there's a proliferation of advertisements, et cetera, saying to the patient, "Ask your doctor for this medication. If you're having this symptom, ask your doctor."
So, the fact that you're out there educating people about this illness, people are listening and hearing. And when they see you, a young African American woman giving voice to these issues, they'll listen, and maybe they'll ask their doctor. Maybe they're like, "Well, I'm feeling tired all the time. I never knew that this could be something else." So, I commend you for the work that you're doing. I mean, just since I learned a few, I've shared the information with so many other black and brown women who are saying, "We need to be talking about this," so that people can ask their doctor and say, "Hey, I heard this, can you run a test? Can I get a blood test because I’m having these symptoms as well?"
Taja Simmons: I always say to my patients and also advocates to be your biggest advocates, to ask the questions, and it's okay if you don't receive the answer that you may want from your physician. That just means go elsewhere, keeps searching, and you'll find the answers that you need because that's what I continue to do on a daily basis. So definitely black and brown women, white Caucasian, Hispanic, non-Hispanic all women should definitely be steadfast and definitely in front of their health care, just because we face things on a daily basis that no one may ever know because us women, that's just what we do. We continue to push through things. And we think, "Oh, we're okay, we'll just do something later," or "We won't worry about it." So, you just have to be your biggest advocate because no one else will be.