Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you by our generous sponsor, Teva Pharmaceuticals.
Racial inequality has plagued our country for years, so it should be no surprise that racial disparities exist in healthcare. We all need to be part of addressing these disparities. In this episode, our guests present actionable steps we can take to identify and eliminate biases, including our own.
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Molly O’Brien: Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re addressing racial disparities within our healthcare system. I’d like to introduce both of our guests. Dr. Amaal Starling — she’s a doctor, a professor, and a migraine advocate. Also joining us is migraine patient and advocate Jaime Sanders, but you might know her a little better as the award-winning Migraine Diva.
Thank you both so much for joining us today.
Dr. Amaal Starling: Thank you so much for having us on.
Jaime Sanders: Thank you.
Molly: We’re glad you’re here. So let’s talk about the big picture overall. What are some signs of racial disparities without our healthcare system?
Dr. Starling: I think when you’re looking at the big picture overall, the big thing that we see is that we do have differences in health outcomes. So individuals who are underrepresented — from underrepresented groups — they are individuals who have poor health outcomes, and they often will have a much higher burden of disease across the board. So that really is the big picture, and then you have to dive in as to why these things exist — ends up uncovering a lot of things that we can make adjustments to to alleviate some of these healthcare disparities that are there.
Molly: And I think you bring up a great point, is why do some of these disparities exist? Can we pinpoint any of them?
Dr. Startling: Yeah, I think a lot of these disparities — the reason that they exist is systemic racism that is pervasive across not only our society here in the US, but really just worldwide. So what does systemic racism result in? Some of the things that it results in that I’m very aware of is just a lack of diversity in the physician workforce, and that’s huge. When you have a lack of diversity within the physician workforce, that’s only going to reinforce those healthcare disparities that exist. The racial stereotypes and just really racism specifically as a risk factor for disease are things that are going to expand those healthcare disparities.
Jaime: Yes, I agree with Dr. Starling. To expand on that, I just recently read in the Journal of Racial and Ethnic Health Disparities many social, political, and economic resources continue to be stratified by race. For example, the cumulative experience of microaggressions and individual prejudices associated with chronic stress and weathering, which results in increased chronic illness and a burden on those populations. And racism is encoded in institutions from, for example, policing to schools and banking, [inaudible] residential locations, and a host of place-based determinants of health that predispose individuals to illness.
So this is a huge framework that has been constructed over centuries that needs to be broken down, so it’s going to take quite a bit of work to do that.
Molly: And many states, many governments have identified racism as a public health crisis, so tackling that could be possibly the first step.
I want to talk a little bit more about what the sources are of racial disparities within healthcare.
Dr. Starling: I think that’s a really interesting question that I have learned a little bit more about in the last several months. I used to think that one of the biggest sources is access to care. And then, as we all need to do, I was reading more about, specifically, race and pain and the perception of pain amongst races from different providers of different races. And what I really then started learning is that it’s not just about access to care. That is a component, but it’s not just about that.
And, in fact, the bigger problem are the racial biases and stereotypes that exist that are leading to the issue of access to care but also leading to the fact that even when access to care is equal across the board, that because of systemic racism, a clinician, whether they be Black or white, is perceiving that the Black individual has less pain simply because they should be feeling less pain. So it’s really these racial stereotypes and healthcare fallacies that people are perpetuating that seems to be at the crux of the matter, leading to many of these other healthcare disparities.
Jaime: Totally agree. Racial minorities or BIPOC experience discrimination in the quality and longevity of patient visits, and this results in the type of referrals indicating testing or treatment, the prescription of pain medication. And these disparities in health outcomes and healthcare access persist, although explicit, overt displays of racial bias have become less accepted in the US since the civil rights era.
And like Dr. Starling has said, it is those implicit biases that play such a strong role in why we have these gaps and disparity when it comes to healthcare in this country, even when you control for socioeconomic status. That really doesn’t play that huge of a role in many instances. It boils down to those biases that are perpetuated.
Molly: It’s disheartening to hear that this is happening when people are just trying to access medical care. So hopefully we can help take some actionable steps, which we will get to.
But before that, I’d like to narrow it down to a more personal level. So I’ll direct this question at you first, Jaime. I’m wondering if you have experienced firsthand any racial disparity within you seeking access to healthcare.
Jaime: I have, unfortunately, and it presents itself most often when I am seeking urgent or emergency care to treat an acute migraine that has persisted for a long time. And although I have a written treatment protocol by my headache specialist, a lot of times, that is ignored or it is modified, and it can be quite frustrating.
And during those visits, I am often asked am I doing enough to manage my pain, and it’s implied as if I’m there to seek drugs. And it doesn’t look very good that I’m coming in with a piece of paper with specific medications and doses, because it’s like, “Well, you have this knowledge of this specific medication that you want, so you must be drug seeking,” even though it’s signed by my headache specialist. That kind of doesn’t matter at all.
And I blatantly have been blamed for my pain by a physician, and I was told I was absolutely not doing enough and was kind of forced to have to go through the laundry list of everything I’ve over the 13 years of being intractable to try to get better. And one physician referred to me as an object instead of a person, because I do carry a binder with all of my protocols, a list of my medications, my allergies, my past doctor visits, just everything there that validates my disease and my condition. And so she referred to me as “The Binder” and not as a person, and so that was extremely frustrating.
Molly: That is so hurtful to hear, and I’m so sorry for these experiences that you’ve had. Especially as a fellow migraine patient, to be asked am I doing enough? That gutted me to the core, being referred to as an object. I’m really sorry that you’ve had to go through this. You’re just trying to access medical care, and you know about your disorder, you know about your body, so why is that looked poorly upon? That’s so difficult to hear.
Jaime: Well, I think a lot of that has to do with going back to those biases. And as a Black woman or as a Black person in general, you can’t be too knowledgeable sometimes. And if you come off as knowing too much, then you can be seen as “the uppity Negro.” And you’re showing, like you’re — how dare you kind of assume that you know more than me? And there’s a very fine line that I have to balance when I am in these situations, and I have to be very cognizant of the fact that it’s very possible that my color and my gender are going to be seen first before my pain condition.
Dr. Starling: And, Jaime, I can’t imagine having to walk on eggshells on all of that while you’re having a migraine attack.
Jaime: Yes. It happens every single time, and it doesn’t get any easier. It creates a lot of anxiety. And, honestly, I wind up kind of suffering at home because it’s not worth it because I don’t know what physician is going to walk through that door. But it’s important that we highlight these stories and allow people into what it’s like to be a person of color accessing healthcare. Regardless of whether you are living in poverty or middle class and have access to commercial insurance, we all experience these things.
Molly: So disheartening to hear, but like you mentioned, Jaime, I do think it’s really important that we educate people that this is happening and then again try to take those actionable steps to change it.
Dr. Starling, I want to move over to you, and I’m wondering if you have seen any of these biases within healthcare either on a professional or on a personal level.
Dr. Starling: On a professional level, we see what those poor health outcomes are. So if we’re talking specifically about migraine, we know that there’s a higher burden of disease within our Black community in headache diseases, specifically in migraine. We know that there is reduced referral, that there is reduced diagnosis, and all of these things will lead to these poorer outcomes.
So in preparation for this podcast, I was looking up some recent data, trying to kind of look at all the different things I wanted to talk about and make sure that they have evidence behind them. So one of the things that I was thinking is, okay, so we’re looking at access to care, we’re looking at referral, we’re looking at reduced diagnosis, we’re looking at reduced prescription of migraine-specific treatment options.
And then I was thinking about looking for adherence data. I, in my mind, was thinking that if I look at adherence data and look at those disparities that I hypothesized in my mind, that there would actually be a difference in adherence, perhaps related to migraine education. And so in my mind, I thought non-Hispanic whites would have higher adherence than other communities. And I was wrong. There’s actually a study that looks at that.
So then it actually brought me back, because I thought, “Oh my God, there is my bias,” right? I assumed that that’s what the data was going to show me, and that’s my bias. And it made me also think about, well, when I’m seeing these patients, I need to be aware of my biases because for my patients that are Black or are Hispanic, maybe I’m thinking in my head unconsciously and my implicit bias is that they’re not as adherent with medications, when now I know there is data that shows that adherence is actually the same and, based on this data, that that isn’t something that’s leading to these healthcare disparities.
So again, not only do we all need learn, do we all need to study — because the reason the study was done is because that was the hypothesis as well. So we need to study these things, and then we need to read them and be willing to uncover our own biases and then make change. Nice people can be biased, and that’s the issue, right, is we all have biases.
Molly: So very true. I do think that’s a big part of this, at least moving forward, is that we all kind of confront ourself and acknowledge that there may be bias within us.
So, Dr. Starling, you had mentioned that you looked at some studies, you looked at research. And racial disparities within our healthcare system is not a new topic. In fact, there have been multiple studies on this issue and relating issues for decades. So I’m wondering your thoughts on if we might be coming to a turning point on how we can improve our healthcare system and your thoughts are on the fact that we have this data in our hands and we have had it for quite some time.
Dr. Starling: Yeah, so I do think that we could be at a turning point, but for us to truly be at a turning point, we cannot let the momentum slow down. What we can all do is we can all listen, we can all learn, and we need to do our own self-education for this.
An interesting and probably irritating phenomenon that maybe, Jaime, you can attest to is that right now, with all the focus on healthcare disparities and systemic racism, a trigger effect that we are all doing is running off to our Black friends and our Black coworkers and saying, “What can we do? What do you need us to do? How can we help?”
And I compare that to, I’m a physician. I’m a headache specialist. When I’m treating migraine, I don’t go up to my patient with migraine and say, “What can I do? How can I help you?” No. I went to medical school, and I went to neurology residency, and I went to headache fellowship, and I read the headache journal Encephalalgia every single month when it comes out. I’m doing research on my own. I’m doing all these things to learn about the disease of migraine so that when that patient with migraine comes to me, I can treat them. I can diagnose them. I can make recommendations to them. I’m not going directly to them and saying, “How do I help you?”
And so I think that’s an interesting analogy, that we shouldn’t just be running off to people who are from underrepresented groups and saying, “Okay, hey, victim, how can I help you?” But we actually need to educate ourselves, and we need to learn ourselves through all the different resources that are available and read and listen to podcasts and go to lectures and educate ourselves so that we can figure out how we can address systemic racism. So I think that’s one thing.
Now the second thing that I would say too is you take what you learn — and I’m not going to take what I learn there and say, “Okay, well, I’m going to figure out how to address health economics, because there’s a huge disparity there amongst races.” That’s not my area of expertise. But my area of expertise is I’m a physician, I’m an associate program director for a fellowship, I’m a transitional-year program director, all in medicine, and I can make change within my area of expertise, right?
So for me, I have access to the physician workforce and being able to increase diversity within the physician workforce, so I’m going to work on that. I’m going to work on making sure I support, mentor, sponsor individuals that are from underrepresented groups because that’s in my wheelhouse and I can do that well. So that’s in my wheelhouse, and that will actually advance these issues.
I can do and participate in research and write manuscripts in headache medicine that is associated with racial disparities. I can make sure that the clinical trials that I’m doing, that I have — making sure that I have inclusion and exclusion criteria that ensures that we are recruiting individuals from diverse backgrounds. These are all things that are in my wheelhouse that I can do.
Molly: Jaime, I’m curious your thoughts on the analogy that Dr. Starling provided, and do you think it’s a bad thing for people to ask other people what they can do to help?
Jaime: I think her analogy was spot on, and, yes, I can attest that I’m getting fielded with a lot of “What can I do? How can I help?” And I don’t mind that, but I also am very vocal in saying, “Don’t rely on the few people of color in your circle to guide you through this process. It’s really up to you to do the work and educate yourself, because we didn’t create this issue, so therefore we are not in the position to fix it. And that’s not fair for us to have to feel that burden.
And I know my colleagues are coming from a very well-intended place, and I’m okay with that. But they also need to understand it’s very draining on us because we’re already dealing with having to live in this skin 24/7, and we don’t want to feel responsible for having to make sure that you become better at not being biased, because that’s not my responsibility. What I can do is support you and guide you towards things that I think will help you become more educated.
Molly: I think you hit the nail on the head there, Jaime, saying that it shouldn’t be my burden and it’s not your responsibility to fix it. We all need to have this internal quest to try to make it better. So I want to ask you — we have talked about some actionable steps that people can take. So let’s start off with talking big picture and then small picture. I’ll leave it up to either of you to answer this. What other steps can we take to help end racial disparities within healthcare?
Jaime: Learn that people of different backgrounds and ethnicities speak differently about their experiences, and honor that. Really listen to what someone is saying to you, and especially when we’re speaking about migraine and pain conditions, because we rely on symptoms and not signs and diagnostic tests and laboratory tests and things like that to determine the validity or the existence of these diseases.
It makes it a lot easier to dismiss somebody’s experience or pain if you’re having these unconscious biases play a role. And we just need to be more open-minded, and that physician-patient communication is key. There needs to be a level of trust, and unfortunately, there is a huge level of mistrust between people of color and clinicians and researchers just because of the history between clinicians and researchers and people of color in this country.
Molly: So true. And, Dr. Starling, I’m curious your thoughts on something that Jaime said. She said there’s a lot of distrust within people of color and healthcare practitioners, and one of the suggestions that you made to help — a call to action — is to diversify the healthcare field. I’m wondering if that correlates here and then other actions that we can all take to help end these racial disparities within healthcare.
Dr. Starling: For sure. It definitely does. Even when you walk into a hospital or a clinic setting, you’re walking down the halls. There are different posters, right, talking about the different initiatives that are going on, advertising for the cancer program, the headache program, the sports medicine program. The majority of those pictures are of individuals who are white. So as a patient who is from an underrepresented group, you’re walking through those halls, and you’re looking around, thinking, “Maybe I don’t belong here. Maybe this isn’t where I should be getting care.” Even if you may not be consciously saying that, you might be thinking that.
There, of course, is the history from the Tuskegee experiment, from so many other concerns, from how gynecologic surgeries were all discovered, all of these things where the Black community were treated as objects. So it’s not just saying that this person is an object, but they were treated as non-humans and experimented on for years. How do you roll that back? How do you forget that? And then if you continue to perpetuate this notion of “these are not the individuals who belong in this healthcare institution or in this clinic,” it just leads to additional mistrust.
So how do you, as a physician — how do I, as a physician, gain that trust back? I check my own biases as much as I can, and I will continue to do that, because obviously, as I just told you, just yesterday I had to check one of my other biases. I mean, yesterday’s experience made me think back about my patients who are from underrepresented groups and thinking I obviously have this bias and how did that impact my care for those patients? And so now, moving forward, that’s something that I can be aware of.
But some of the things that can help with directly is, number one, we talked about how the patient, if they see people that look like them that have had similar experience to them, it can help patients gain some trust within the healthcare community. In addition, if we diversify the physician workforce, these are individuals who are advancing science, who are doing clinical trials, and they can then be more cognizant of wanting to have a diverse inclusion and exclusion criteria so that you can actually have more underrepresented groups enrolled in clinical trials, which is currently very, very dismal.
The more individuals that you have in the physician workforce — and if you then support, mentor, and sponsor these individuals, they can then rise the ranks. They can become assistant professors, associate professors, full professors of organizations and institutions. They can become chairs of departments. They can become presidents of the American Headache Society, of the American Academy of Neurology, and all of these things.
And so we need to try to identify all those different areas and start making small steps towards addressing those areas. It seems like a daunting problem, and it is, but it’s not something in which none of us are powerless. We have power to make changes that will actually then result in more long-lasting change.
Molly: I also think making sure that these pathways for careers are accessible to anyone and more accessible to more people of color. You really have to — because it goes way back before even the career in healthcare starts. So how do we get there? So I think it’s important too, like people have mentioned, to provide a better channel for more people so we can diversify the workforce.
Dr. Starling: Even before you get to medicine, right, there are so many other barriers, right, and just seeing people that look like you when you’re a kid, seeing people that look like you that are doctors, engineers, presidents, all of these kind of things.
And I think a great example of that is my — I have a little boy, and I think when he was around sixish — or maybe younger, fiveish, fourish — many of my friends are female physicians, and we actually end up to this work thing that kids were invited to. So he went with me, and I introduced him to one of my male colleagues who’s a physician, and I said, “Mosen, this is Dr. Burke.” And my son looked at me and said, “Boys can be physicians too?” And I was like, “Oh my God, yes, you can totally be a doctor if you want!”
And so I realized that he had only been seeing female doctors around him, and he thought, “Okay, so you have to be a girl to be a doctor,” right? And so that’s just a perfect example of if you don’t see it, if you don’t see physicians of color, then you as a person of color, as a kid of color, may not think that that is an attainable goal for you.
So you’re exactly right, Molly, that diversifying that physician workforce. And then me, as a physician, as a female physician of color, I need to make sure I do go to my son’s school on career day so that other girls of color can recognize that they can be me as well and do way better than I have ever been able to accomplish and be the next president of the American Medical Association, et cetera. So you’re exactly right. It starts young, and each of us can have that opportunity to interfere and disrupt the system, break down that systemic racism, and show kids of color that there is a pathway to any type of success that they potentially want.
In addition to diversifying that physician workforce, we also, every one of us, need to become comfortable and being okay with having very uncomfortable conversations, right? It’s a new language that maybe we’re all trying to learn, and maybe we’re going to say the wrong thing. So another personal example is that I was talking to a Black colleague of mine about these healthcare disparities, and I kept referring to individuals from underrepresented groups as “minorities.” And I needed to accept gentle correction from my colleague, who said, “You know, it’s better to say ‘underrepresented groups’ than ‘minorities.'” And I said, “Okay, well, why?” And she said, “Because there’s nothing minor about me.” And I was like, “Oh my God, you’re right. There is nothing, absolutely nothing, minor about you. Yes, you are from an underrepresented group.”
So let’s become okay with having uncomfortable conversations. Let’s accept gentle correction. Let’s all create a safe space in which we’re learning a new language, and we may make — just like when you’re learning a new language, you make grammatical errors, you say the wrong word, and then someone will correct you, and you accept that correction, and you move on. And that’s that safe space in which we can start making progress.
Molly: I think that’s so valuable, what you said, is receiving a correction, and you went the next step to say, “Okay, well, why?” So self-education again, which I think is a huge part of this. And yeah, talking about racism is difficult. I don’t know if it has to be, but let’s make it easier. Let’s make it more comfortable to continue to have these conversations with each other. I think that’s so valuable, and all of the points that you both have made I think just take it over the top. I think it’s something that we can all do and we’re all responsible for. So thank you for that. And this is a good start, right, our conversation, hopefully, putting that information out there.
And that wraps up things today for this episode of Spotlight on Migraine. I’d like to say a big thank you to the Migraine Diva, Jaime Sanders, and Dr. Amaal Starling. Thank you both so much for joining us today.
Jaime: Thank you.
Dr. Starling: Thank you so much for having this conversation.
Voice-over: Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.
This podcast is sponsored in part by Teva Pharmaceuticals.
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