IBD in the Hispanic Community With Oriana Damas, MD - About IBD Podcast Episode 144

IBD in the Hispanic Community With Oriana Damas, MD – About IBD Podcast Episode 144

As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Oriana Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and explaining how her work is reshaping our understanding of these diseases


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Transcript

[Music: IBD Dance Party]

Amber Tresca:

I’m Amber Tresca, and this is About IBD. I’m a medical writer and patient educator who lives with a J-pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease, and to bring awareness to the patient journey. Welcome to Episode 144. Inflammatory bowel disease can affect anyone of any ethnicity, however, that fact is still not understood by the general public, but also by some healthcare providers.

My guest is Dr. Oriana Damas. She is an assistant professor of medicine in the division of gastroenterology at the University of Miami Miller School of Medicine. She is also the Director of Translational Studies for the Crohn’s and Colitis Center at the University of Miami. Dr. Damas has been studying how environment and genetics play a role in the development of IBD. She has especially looked at how IBD is affecting immigrants to the United States from Latin America. Her research also includes how diet may affect the development and the progression of IBD. She explains why research into diet is so difficult, what she’s learned from her research so far, and how the results of her work are affecting how we think about IBD for everyone who is touched by these diseases. Dr. Damas, thank you so much for coming on About IBD.

Oriana Damas, MD:

Thank you for having me here.

Amber Tresca:

Oh, of course. I’m really excited to have this conversation with you, and to learn some more about your research. But first, let’s start off, I wonder if you would give a brief introduction so our listeners can hear about where you’re coming from.

Oriana Damas, MD:

Yes. I am a associate professor at the University of Miami. I am a gastroenterologist and I am also a physician-scientist with a focus on inflammatory bowel disease, especially as it relates to understanding what are dietary and lifestyle factors impacting the life of IBD patients. Again, I’m very excited to be here today.

Amber Tresca:

Oh, thank you so much. Our topic is how IBD affects the Hispanic community and also is affecting immigrants to the United States who are coming from Latin America. First off, I just wonder what is behind your interest in studying this area of IBD?

Oriana Damas, MD:

Well, Amber, I have to say that it started almost as a result of my training. I noticed when I was even as young as a medical student that diseases in general seemed to afflict Hispanic patients either more severely or in a different way when I was rotating through the hospital. What do I mean by that? I noticed that patients often were either underdiagnosed or they went a long time without getting the appropriate treatment. And then when I went into GI as my specialty and more of a focus on inflammatory bowel disease, I noticed that patients who had IBD who were of Hispanic background really didn’t know much about their disease. Inflammatory bowel disease is not typically discussed in a dinner table among patients of Hispanic backgrounds. I’m Latino, as well, and this is not something that we know about and that your mom or your grandma, or it’s not something that we have a family history of, typically, and so it’s something that we’re not very familiar with as a community.

This is something that I observed in the patients that I was treating back then as a medical resident and as a fellow, and so that really inspired me to dig a little bit deeper and understand what were factors that were relevant in this community and what were factors that could be contributing to the development of disease? That really inspired the rest of my work. From there on forward, it really has been the root of my research, but then I’ve evolved it to look at dietary and environmental factors, but all primarily coming from that root source, which came from observing that Hispanic patients were developing IBD and that they really had a poor understanding in general of what it meant. I’ve dedicated a portion of my work to really trying to help patients understand that and describe the disease in the Hispanic community.

Amber Tresca:

Digging a little bit more into that, you were seeing it, but how common is IBD in the Hispanic community and in the immigrant community, and what are the trends that you’re noticing there?

Oriana Damas, MD:

Well, the truth is that it’s not as prevalent as it is in non-Hispanic whites, but why that is? Well, it’s just a matter of time. There’s many epidemiologic studies now, so these studies that look at the incidence and prevalence of a disease in a population, so that’s what we describe as epidemiologic studies. What we find in these studies throughout Latin America is that this disease is, in fact, increasing in its incidence, so meaning a new disease, and in its prevalence, in people that just overall live with the disease for long periods of time.

What we see in the United States is something similar, where the prevalence for non-Hispanic whites, so you’re Caucasian Americans, so to speak, will have a much higher prevalence described in the literature when we compare them to other minorities. But we do see that the prevalence among Hispanics and Latinos in the United States is increasing, and although it’s not as high a prevalence as it is in the non-Hispanic white communities, I think it’s only a matter of a few decades before we reach that similar high prevalence. It becomes altogether very important to prepare our community of Hispanic/Latinos to understand what this disease is, to be prepared for it, and the same goes for our Latin American countries.

Amber Tresca:

You have already described that you were seeing maybe some of the results of healthcare disparities in the Hispanic community and the patients that you were treating, but what is causing that? What are the barriers that are happening in the Latin American community in the United States, and what might contribute to these problems that you are seeing?

Oriana Damas, MD:

That’s a great question, and the truth is we don’t know exactly what contributes to IBD specifically. I think this is an area that we definitely need to dive into as researchers and as policymakers. But if we extrapolate from the data in the cardiovascular literature and endocrine, who have looked at Hispanic communities who have a chronic disease in the United States, we can identify that there are several barriers in existence that can lead to underdiagnosis and can lead to disparities in the delivery of care for our patients.

I think it’s probably the same reason that is occurring in our IBD community, but I can’t tell you exactly if there’s specific IBD-related causes. What those are on a broader level are several factors. One is immigrant communities may have less access to care, for example, they may be a little bit more hesitant towards seeking care, as well. They may also have less flexibility in their work and/or life in general to be able to seek care in the first place. There’s the additional language barrier that faces many immigrant communities, including the Hispanic/Latino community.

Some of these are financial, policy, and really much larger, broader levels that are really out of the hand of us as providers. I think we can obviously get involved as policymakers and advocates for our patients, but in terms of our patients and helping our patients directly, I think as providers, what we can do for our Hispanic patients is try to understand what are perhaps some individual barriers that patients have. If we notice that patients are less accessible or they’re unable to keep up with appointments, for example, not to be so quick to say, “Oh, this patient just doesn’t show up.” Understand that there are disparities that very much exist among different minority communities, including the Hispanic/Latino communities that may lead to these no-show rates. That’s one level.

The other factor is to really have a level of awareness as providers and as doctors in general, that patients of minority background, including Hispanic/Latinos, can have inflammatory bowel disease. I think that’s a big, important factor to make because I’ll tell you that it wasn’t that long ago when I myself was in medical school and I was taught that inflammatory bowel disease primarily occurred in patients that were of white and Jewish backgrounds. That detection level as a provider may not be present across the board throughout the United States. I think we need to raise awareness, even as providers, that this disease can afflict other communities, as well, beyond the non-Hispanic white community.

Amber Tresca:

There’s some institutional inertia, I think, there that’s been decades in the making, and so it’s a little bit difficult to undo. And then also, I’m wondering about cultural factors. You said already that maybe bowel habits aren’t discussed at the dinner table. Is there anything else in the Hispanic and Latin American communities that are sort of standing in the way of people getting IBD diagnosed and treated?

Oriana Damas, MD:

That’s such a great question, and I think it’s something that we definitively have to study a little bit more. There was a qualitative research study that was done, and what that means is basically they had focus groups of patients that looked at these type of social and cultural factors that influenced talking about IBD and the perceptions of IBD in a South Asian community. What was found is that talking about bowel movements was something that was not acceptable, that having communication about IBD in general was sort of a stigma when talking to other relatives because of the factors that were considered to be detrimental to either marriage or marriage potential and all sorts of other stigmas.

Why do I say this? Because although I don’t think that’s necessarily the same for the Hispanic/Latino community, I do think that we really need to understand what are social factors that influence IBD perception and medical-related behaviors when it comes to IBD in our community? We actually have not done that yet. What I can tell you is that, speaking as a Hispanic/Latino person myself rather, I’m of Colombian background and I was born in Colombia, I can tell you that, for example, IBD and my family and across the broader community of what that means, like us Latinos, we like to have big families and big events, nobody really knows what IBD is. As an IBD physician, I have to do my part in educating what IBD means. In my network, in my social network of the Latin community, people are not familiar with what this disease is in the first place.

I think we have to study what are factors that influence behaviors in patients with IBD of various backgrounds, but we also have to do a big part in educating our community in general that this disease exists, because if you don’t know it exists, then you may not be aware that you’re having the symptoms for it. It’s a big part of that, as well. I think as the prevalence of IBD increases across Latin America, we have to do our role, and this is where educating providers, educating the physicians and nurses in Latin America, about the appropriate workup for this is important, but also getting greater awareness in general or creating a general awareness in our Latin American countries is important, as well.

Amber Tresca:

I want to switch gears and talk about your research. You mentioned that you were a physician-scientist, as well. In particular, I was interested in this research that was showing that there’s a pattern of IBD in people immigrating to the United States. I believe the research was done on those immigrating from Cuba. Could you talk about that research and what it showed?

Oriana Damas, MD:

Absolutely. We had this neat idea to look at our cohort of Cuban patients who developed IBD and were coming to our center. It was actually my mentor at the time, it was Dr. Maria Abreu, and she’s like, “Wouldn’t this be cool to look at this?” I’m like, “Yeah. Let me look into this.” What we did is I got the data that we had been collecting on age of diagnosis, when did patients develop symptoms, and we collect data on when they came to the United States. I thought it would be neat and almost like a natural experiment to only look at Cubans, because in a way, Cubans on their own are very mixed, in general, they’re genetically admixed. I say that word because I do research in genetics, so I know what that means. It means a little bit of African, a little bit of European, and maybe a little bit less American Indian background, or Native American. In any case, so I did it only in Cubans to really try to at least control a little bit for the genetics, as much as I could on a descriptive data.

We then looked at, well, what’s the relationship between decades of immigration? We know that as part of political reasons, there was different waves of immigration of Cubans to the United States, and so they really did come in cohorts of different political milestones. When I grouped those in patients into this was a ’50s group, this was a ’70s group, this was an ’80-plus group, a 1980-plus group cohort, when they came to the United States, and I looked at the relationship between the time that they developed IBD, their symptoms, and the time that they immigrated to United States, what I found is that patients are developing IBD that 1980 cohort and forward, because this is what I looked at from the more recent decades, they’re developing IBD within a shorter time period from the time that they’re coming to the United States when we compared it to the 1960s group and the 1970s group.

What this tells us is that either something’s changing in Cuba, that there’s some sort of difference in environmental exposures over there, although it tends to be a lot slower than in any other developing country because of the political reasons, but either something’s changing there or when they’re coming here, patients are perhaps more rapidly assimilating to the American way, and maybe that’s creating the increased risk factor of when they’re going to develop IBD. We don’t exactly know.

I should premise that with, we haven’t really quite discussed this, but a Western style of living is associated with an increased risk of IBD. We do see that described across other studies, as well, where immigrants go to countries where there’s a higher prevalence of IBD, and those immigrants coming from low prevalence areas of IBD do kind of adopt a similar prevalence of the IBD that is present in the country that they go to. It’s something similar that we did, except that we compared it across immigration periods and we could see that time to development of IBD that is shortening, but I think we need to do more research into why. That’s part of some of the research that I’m doing now.

Amber Tresca:

I think probably one of the bigger things that is being discussed and looked into is research on diet and IBD, it’s kind of been a big thing the past several years, but also that research is apparently not very culturally inclusive when it comes to the Hispanic community. Can you tell me more about the barriers that you’re seeing there that you’ve identified, and why they need to be addressed when you’re doing this research?

Oriana Damas, MD:

Absolutely. As I mentioned earlier, my first area of interest was really understanding why this disease was developing in Hispanic patients. I did some research in genetics, and I noticed that it’s not all in the genetics. A lot of it has to do with the environment. Then I started looking at environmental factors, of which diet is a huge environmental component, not only for contributing to an increased risk of IBD, but also affecting ongoing inflammation and the quality of life of patients. That really led to my interest and my evolution of interest.

I’ll tell you that over the last couple of years, I’ve also increasingly become very interested in the role of diet in IBD as a treatment. Obviously, I think at this point we have to say as a junctive, I don’t think it should be sole treatment. I think medical therapy is very important and should not be replaced, but I do think as a junctive, it may help patients get into remission and it may help patients stay in remission. I think we need to do more research on that topic, but we’re learning a lot of its promises in the realm as a therapeutic agent on its own.

To get to your question, over the last couple of years, I’ve noticed that when I tell my patients, “Well, you have to do a better diet,” or maybe I don’t say it like that exactly. I say it much nicer. I say, “Well, stay away from the very processed foods,” or, “Don’t eat so much red meat. Let’s try to increase your fiber, fruits, veggies,” things that maybe all of us have difficulty with doing. But I find that when patients ask me for more guidance, besides a nutritionist that we’re fortunate to have in our center, I tell them, “Well, there’s a lot of studies on the Mediterranean diet.” But then I paused, and then I realized, well, is it realistic to tell someone from Colombia, from Cuba, from Peru, “Well, just change your diet entirely,” let alone that you’re suffering from this disease already, “Change your diet, change your patterns, have your whole family eat a Mediterranean diet,” which, by the way, is also more expensive?

It is not realistic, and it has to do with also food affordability, and also dietary adherence. Dietary research is really hard to do. Why? Because it’s very difficult to change the dietary patterns of humans. We just want to eat what we want to eat, so that’s a problem. That has really inspired me to look into realistic ways to improve diet in Hispanic communities, and how can we do that? Well, let’s start researching what are they eating? What causes inflammation? What are the recipes that maybe we can adapt that will be anti-inflammatory, but also feasible and affordable for patients? That’s something that I have a Career Development Award in, and I am currently looking at the dietary patterns of Hispanic/Latino patients with IBD, and I’m looking at the relationship between what they eat and inflammation over time.

So far, what I’ve discovered is really cool, because it shows that there’s promise in a Hispanic diet. Many people think, well, a Cuban diet is not healthy. Well, it can be. I’ll tell you that so far, I’ve found that some food items like very starchy vegetables, which are high in resistant starch, but high in fiber, as well, patients that were consuming these type of vegetables that are really not known otherwise, if you’re not Cuban or Colombian. If you’re from Minnesota, you’re not going to know what yuca is. These vegetables are actually associated in our study with a lower risk of relapse in these patients, in our patients, so it shows promise.

What’s the next step after hopefully, I get this published this year and available for everybody to read? Our next step is really to develop this culturally-tailored anti-inflammatory diet. I just submitted a grant to make this as a clinical trial, but even before then, we’re developing the recipes for them in a way that is very mathematical. It’s not just, oh, go and eat this recipe that is good for you. We’re calculating what’s the macro and micronutrient content in these recipes, incorporating these veggies that we found were relevant, cultural foods that are relevant, and adopting them to create recipes for our patients.

Amber Tresca:

That’s incredible. I hope I can see some of these recipes when you start getting into the weeds with this, because that would be amazing. I think this is a big part of this, is that we can identify the problems, like I think in some cases, we know what the problems are, but then we actually have to try to develop some solutions.

Oriana Damas, MD:

That’s exactly right.

Amber Tresca:

Your research is kind of doing that already. I’m going to ask you a really big question, though, because you are already deep in this and you’re already doing plenty, but what would you like to see other healthcare providers do that they can help address the needs of the Hispanic and the Latin American community who are at risk of IBD or who are already living with IBD?

Oriana Damas, MD:

Wow, that’s such a good question. Well, I think I would like to have more accessibility for patients to get education on their disease. I think it’s not fair to say only for Hispanic and Latinos. I think really all patients need it broadly. Now, what we can do for Hispanic communities, in particular, and what providers can do is gauge for language barriers and education level or educational awareness of IBD in general in those patients that are of Hispanic/Latino background, because I’ll tell you that most of the time, we assume that patients have the ability to look this up and to do some of the researching on their own, but there’s barriers to that. You have to be able to navigate the language, know that there are support groups available.

These are things that are very, in a way, American and Western, but things that are not very common outside of that space. I think that when a provider is taking care of a patient, I think there has to be some level of awareness that this gap exists, and some level of referral towards patient support systems, foundation support, and all the other resources that patients need, like nutritionists, psychologists, and that perhaps if providers can have the ability to network with Spanish-speaking psychologists and nutritionists that are familiar with the cultural aspects, let alone the language, then it’s going to work for those patients.

Amber Tresca:

Is there anything available already? I know you yourself have conducted some patient education in Spanish. Is there anything else that is created that’s out there that people can access?

Oriana Damas, MD:

The Crohn’s & Colitis Foundation has a webpage in Spanish, and so that is one resource. I do think we need to create more. Actually, that’s one of my five-year plan endeavors, and I hope it’s more like of a one-year plan endeavor. I just had a meeting with a lovely patient advocate that I would love to pair up with to really start to create a platform that has videos in Spanish that interviews doctors, but with a voiceover or a translation for Spanish speakers, because we really don’t have that. We really don’t have that.

I do know that there is a very nice webpage out there, now don’t quote me on the name, from Spain that has tried to do this, and I have looked at it and I have loved it. I know there is a Spain resource out there, but unfortunately, as much as we want to say we’re all Spanish, we’re all the same, it’s really we need to create things for our own country, for our own patients, and that are applicable for Latin America because these are immigrants from Latin America or first-generation US-born patients, as well. I think on this side of the world, we really need to start engaging in these type of education platforms, and I think the more foundations that back this, the better we are.

Amber Tresca:

I would put myself in that category, as well. I would love to be able to translate all of the information from this show into Spanish, but of course, there’s always barriers. There’s always that funding barrier that’s there, unfortunately.

Oriana Damas, MD:

Yes.

Amber Tresca:

But I will find the resources that you are talking about, and I will absolutely put them in the show notes to make them available, and then we will hopefully be able to create more things. It sounds like you have some great plans, so we’ll be sure to keep watching for that.

We just met. We just met today to record this podcast. I actually didn’t know you were born in Colombia, but I saw on your Twitter as I was going through your Twitter, you were recently back in Colombia. What type of things do you recommend for vacation or to get a great flavor of the country? What do you like to do when you go?

Oriana Damas, MD:

Oh. Well, I would recommend going to Cartagena. I love Cartagena. Beautiful, beautiful city with tons of culture, and you get a taste of the Caribbean-Colombian flavor, which is very different from the rest of the country, I should add, but it’s very fun, and I absolutely would recommend going there. Medellín is another place I actually just came back from, and it’s a really cool city with tons of activities to do. They also have really explored lately ecotourism a little bit, kind of like Costa Rica, but now available in Colombia, too.

Colombia is a beautiful country. There’s so much diversity in the regions and in what you can do. I would encourage anybody that wants to go to also try to go to what we call fincas. Fincas are these farms that many Colombians own and they go to on the weekends primarily, and they’re like little escape villas and they’re amazing. If you can have a friend that’s Colombian who has a finca, please, by all means, go over. That is actually my favorite part of going to Colombia, besides trying all the amazing food that I love from my country.

It’s funny that I mentioned even fincas now, because one of the things that when I was in this conference in Colombia, I tell the Colombian doctors, “Well, the incidence is increasing.” We actually published a paper on this with a Colombian doctor in Medellín, Dr. Fabian Juliao Baños, and we published the incidence of IBD, of ulcerative colitis, in particular is increasing in Colombia. When doctors asked me, “Well, what can we do to tell our patients to prevent IBD in their kids?” I tell them, “Well, tell them to go to the fincas more. Tell them to eat more of their native food and not so much the processed American food that comes over.” These are things that Colombians can do, and I think any Latin American country or developing country, go back to their roots. That’s what I love about Colombia. I highly encourage anyone to go. I think it’s a very fun place.

Amber Tresca:

Well, the photos that were shared on Twitter looked amazing. You all were there for a conference, but it looked like you had some fun, too, so that’s-

Oriana Damas, MD:

Yes. Colombians know how party. That’s another important part I have to tell you, we throw a good conference.

Amber Tresca:

Oh my. Well, let’s see. Maybe I’ll have to try to get that on my list one of these years.

Oriana Damas, MD:

Maybe I’ll get you invited next year.

Amber Tresca:

Ooh, that would be amazing. Well, Dr. Damas, I’m so excited for all of the work that you’ve already done, that you’re going to do. This is so needed, obviously, in the community, and for sure, I am going to keep watching. I want those recipes. I just want to thank you for everything that you’re doing for the IBD community. It’s so needed, and it was really my pleasure to talk to you today.

Oriana Damas, MD:

Thank you for having me here. For me, it’s a pleasure to talk about this, and I feel very passionate and very strongly about this topic. I’m always wanting to come back and talk about it more. Thank you.

Amber Tresca:

Hey, super listener. Thanks to Dr. Damas for finding the time to talk to me about her research. The outcomes will help all of us who live with these diseases, and will hopefully give some direction on how we can try to prevent IBD in future generations. When you are feeling alone in your disease journey, remember that passionate physician-scientists like Dr. Damas are working every day to understand IBD and make life better for all of us, and what’s more, they’re making progress.

As always, links to a written transcript, everyone’s social media handles, and more information on the topics we discussed is in the show notes and on my Episode 144 page on aboutibd.com. Thanks for listening, and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio

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