Disparities in Lupus Care: Drs Alfred Kim, Ashira Blazer, and Jillian Rose-Smith

In the first of a 2-part podcast, Dr Alfred Kim, director of the Lupus Center at Washington University in St Louis, brings in Drs Ashira Blazer and Jillian Rose-Smith from the Hospital for Special Surgery in New York, to discuss how race, ethnicity, age, sexual identity and orientation, and socioeconomic status can affect access to care for systemic lupus erythematosus.

To listen to part 2, click here.
 

Alfred Kim, MD, is an assistant professor of medicine at Washington University School of Medicine in St Louis, Missouri, where he founded and codirects the Lupus Clinic. Ashira Blazer, MD, is an assistant attending physician and assistant professor of medicine at Weil Cornell Medical College and the Hospital for Special Surgery. Jillian Rose-Smith, PhD, MPH, is director of Community Engagement, Diversity & Research at the Hospital for Special Surgery.

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TRANSCRIPT:

Speaker 1:
Hi, my name's Al Kim, director of the Washington University Lupus Clinic, and today we are talking about a topic that is intensely discussed within various lupus circles, but quite hasn't made its way out to common conversation. And that is the healthcare disparities and their impacts on patients with lupus. So today I've invited two experts in this rapidly growing field to introduce and highlight outstanding questions that are related to identifying root causes of these disparities and solutions to overcome them, they are Dr. Ashira Blazer and Dr. Jillian Rose. So Dr. Blazer, I'll let you start with introductions.

Ashira Blazer:
Hi, yes, thanks for having me. So I am Ashira Blazer. I am an assistant professor of rheumatology at Hospital for Special Surgery, and I have a deep interest here. So much of my research is on lupus as affects people of African ancestry, and of course that involves health disparities. So I'm very happy to have a discussion here with you.

Speaker 1:
Dr. Rose, why don't you introduce yourself?

Gillian Rose-Smith:
Sure. I am Dr. Gillian Rose Smith, and I'm happy to be with you today and to talk about this topic. And I hope that we can get into why it's important on an everyday basis in terms of people lives. I am currently the assistant vice president for community engagement, diversity and research at Hospital for Special Surgery. And I oversee our rheumatology and ACC access to care operations. And so I'm happy that we're able to have this discussion, focus on things that I'm passionate about, like lupus research and lupus populations. My lupus research is focused on how we better understand the needs of the patient, patient centered care, peer health education, and how we engage the patient in their own decision making with the medical team.

Speaker 1:
So this is a really extraordinary opportunity to be able to discuss kind of a little bit of a condensed fashion, some of the issues around disparities. And I'm going to start with you, Gillian, because I want you to introduce what are disparities, potential origins, and then you brought that question about why they're important. I would love for you to get some of your insight on this.

Gillian Rose-Smith:
Great. So health disparities just mean differences in care, but I want to start out by making sure that we underscore that health disparities are preventable. There are differences in the burden of disease, injury, violence, or opportunities to achieve our optimal health. And so it's important that we also recognize that these issues in achieving optimal health disproportionately affect people who identify as racial minorities, people who identify as sexual minorities, people who may have older age, disability status, different socioeconomic status, and or geographic locations. And so when we talk about disparities or health disparities, we're looking at all those different categories.

Also want to underscore that the origins of health disparities and why they're preventable are often what we call social determinants of health. And social determinants of health just means conditions in which people live, work, and play and age. So that means where you are, where you're located in your life? Who's your community? What's your housing like? What's your education like?
So social determinants of health such as poverty, unequal access to healthcare, the lack of education, stigma and racism are underlying conditions and factors that contribute to disparities. And that's why it's important for us to look at them because those conditions and factors we can influence and change them systemically.

Speaker 1:
I think this brings up a really important point because I think a lot of people naively, and this is based off of their implicit biases, look as disparities as purely a socioeconomic issue or purely a race issue, even worse. This is much, much broader. And I think these are factors that we haven't been necessarily trained in medical school to think about. It's coming in now, but this also prevents us from being able to optimize care to a lot of our patients.

Ashira Blazer:
Yeah, I definitely agree with that. And when we think about the kinds of people who are most affected by health disparities, these are people who are marginalized. And so I think we think about things like socioeconomic status and there's just this force that no one can really control. But really it's that there are structural ways in which our society relegate certain people to the margins and certain people are more privileged. And this is something that permeates all of the social determinants of health, and it's also something that's going to dictate the outcomes for our patients.

Speaker 1:
So I think this is something that we obviously have seen in the lupus space. So I was wondering, Dr. Blazer, if you could kind of review what's known about disparities in lupus? There's definitely been some research, but there's much more that needs to be done.

Ashira Blazer:
Yeah, for sure. When we think about lupus, we know that this is a disease that affects women more than men, so nine to one women to men. And it also is a disease that affects ethnic minorities more than white people. So it's about three times more common in people of African ancestry, but also more common in Native Americans and Asians and also Hispanic Americans. And so when we think about these things, often we think about it from a biological standpoint, but we have to remember that whiteness is not a biological state. It's a state of privilege. And so if we're saying that this disease is more common or more severe in patients who do not have this state of privilege, what we're really talking about is disparities.

So we know that patients of minority background are more likely to develop the more severe manifestations of lupus, such as lupus, kidney disease, which is one of the things we are always trying to screen for and make sure that we are treating because it's a major harbinger of morbidity and mortality. We also know that lupus remains one of the top 10 causes of death through to the fourth decade in patients who are of minority backgrounds. So African American or Hispanic American. Whereas for white women, it actually drops out of the top 10 by the third decade of life. So this is something that's really causing disproportionate morbidity, mortality, and a lot of this is due to the societal factors that we're discussing.

Speaker 1:
So also then brings up this issue of what else to know, what else do we need to research? How do we do this to be able to give us a more complete understanding of the experiences, the wide experiences of patients with lupus, but particularly those that experience disparities. I'm curious what both of you think about what those next steps would need to be. Start with Dr. Rose.

Gillian Rose-Smith:
There are a couple of thoughts here. And one, I really want to be blunt about the money. I think it's important that we understand that one, people of color lack invitations who participate in research in a way that's dignified and doesn't bring them back to past historic experiences or even more recent experiences in terms of people being gunned down or unfairly treated or unjustly treated. And so I think the disregard for bodies of color really have created this force field of fear in the community where there's a lack of participation, especially when populations of color are not approached in a way that's dignified and respectful to that population. And I'll let Ashira talk a little bit about how we respect patients and create partnerships with them in research and why that's important. So I just want to put that out there to do some level setting about what we're up against.

I think the lack of participation in research have many barriers. And the second is financial. There are a number of NIH grants that are given out every year, and we are lacking in how many grants are given to study research specifically on this issue, especially in the healthcare setting. And so when I talk about the money, I think it's important that we have the finances, the financial support, not only for the studies, but also to compensate patients for their time as a recognition to some of the social determinants of health that they face, whether it's loss of job, lack of job opportunities, disruption in their family and lifestyle setting, whether they are not able to find a babysitter to participate. We know that those are some of the four issues that come up that shuts this community out of being able to participate in further research so that there can be medical advances.

Additionally, I think it's important for us as medical providers to look at our own perspective taking and put ourselves into the shoes of our patients. I think it's important to increase our empathy and compassion, and more importantly, it's critical that we build partnership, reframing the interaction with our patient and really seeing them as equal and autonomous in the decision making as it relates to their healthcare.

And additionally, just the organizational piece, we have a responsibility as healthcare organization to create access points that are not riddled with hurdles and disproportionate negative outcomes for populations of color. And I think that's something that we also need to address to ensure that we're inviting populations to care, we're inviting them to research in a way that's dignified, but also that benefits their health outcome, benefits and improve their health outcome.

Ashira Blazer:
Yeah, so I mean, I think that was a very broad overview of the kinds of things that we're up against, but we also have to take a step back and understand how we got here and the structures that influence what's going on.

So when we think about health disparities and how we can study them and how we can learn more, we have to be able to ask questions from a perspective that honors the experience of those who face health disparities. And I think that is greatly impeded by the fact that our physician healthcare workforce is very, very ethnically homogenous. So very largely white to a lesser extent Asian, very few of these underrepresented in medicine groups, including African Americans, Hispanic Americans, native and southeast Asians. And so when we think about asking questions that get to the heart of health disparities in being able to come up with meaningful solutions, we have to be able to engage a group of people who can understand health disparities, who perhaps have seen and experience health disparities. And so the lack of diversity in our workforce directly impedes our ability to really be able to make meaningful change.

Speaker 4:
Look for part two of this podcast. As Drs. Kim, Rose-Smith and Blazer continue their discussion on health disparities among patients with lupus.

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