MS Beyond the City: Living With MS in Rural and Underserved Communities

MS Beyond the City: Living with MS in Rural and Underserved Communities

Episode 195 – Podcast Transcript

[(0:24)]Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we are welcoming back Dr. Leorah Freeman, who’s a neurologist and the medical director of the MS Center at University of Texas, Austin. She’s not only dedicated to caring for people with MS, but also leads innovative research to better understand and treat MS. Hi Leorah it’s so nice to have you back on the podcast.

[(0:50)]Leorah Freeman: It’s such a pleasure for me to be here Stephanie, and to to be with you again.

[(0:54)]Stephanie: We’re gonna talk about something a little bit different than last time, which is rural or underserved communities. Um, let’s first start by talking what are those actually? It’s more than just a zip code, right?

[(1:05)]Leorah: Well, you know, it it, it’s funny because, you know, when you use the term rural communities, you know, people often, you know, imagine they think about the landscape and what it looks like and you know, beautiful fields with cows grazing on them and you know, but really, you know, when we’re use these words in our field we’re really talking about the people who live in those communities and their experiences and what they go through and um, you know, and the challenges that they may have in accessing care for example. So, you know, really having this conversation for us today is really more about, you know, talking about the real world experience. Of, you know, many people who live with MS and um, and may experience some challenges that some of us have no idea about.

[(1:54)]Stephanie: Oh, absolutely. I mean half of the appointments, the rehab, the pharmacies, all of these things take time and I don’t live in a rural community.

[(2:04)]Leorah: You know, it is interesting that you, you mentioned this because this is exactly what goes on in, in my mind when I’m thinking about the experiences of people living in with MS in rural and underserved communities. I’m asking myself, what is MS Care? You know, is MS Care just having a neurologist who can see you? No MS Care is a lot of things. You know, people with MS need a village built around them, they need a good primary care doctor, they need a hospital they can go to, they have an emergency, they need PT and speech therapy, they need, um, mental health services. So there’s a lot that people need to have access to. That is so much harder for people living in these, you know, more remote and underserved areas, you know, to access.

[(2:53)]Stephanie: Yeah. Absolutely. And what have you noticed about the lived experience of people with MS who are in these rural or underserved communities both emotionally and day to day?

[(3:04)]Leorah: Yeah, and it’s interesting to make the distinction, you know, because they are rural communities that are far away from kind of urban centers but it’s important to also acknowledge that they are medically underserved area within urban, you know…

[(3:16)]Stephanie: Absolutely.

[(3:17)]Leorah: …uh, urban areas. So there are people, uh, who have no access to care even if they live in a, in a big metropolitan, you know, uh, area. So it’s, it’s important to acknowledge. And their experience may be different from those who live in more remote, uh, more, more remote zip codes. Um, but um, you know, when we talk about the experience, and what I’ve learnt from, you know, you know, 15 plus years in, you know, as an MS specialist first off I have learned that people who live in these areas are incredibly adoptable resilience. You know, this is a story of finding something that works. And I think there’s something in the culture of, of folks who live in, you know, in more remote areas to be independent. And I see this really represented in, you know, in, in, in my clinics and my… Those are my patients who, who happen to live in rural areas. Um, then, then, so that’s, that’s like the positive. There’s, there’s a kind of an experience, um, of, of independence and, and fighting for oneself and, and, and finding solutions that that’s really, um, is so admirable.

But then on the other, on the other side, there’s a system that is crumbling that is not serving those people well. You know, there’s the stories of, you know, difficulty finding even a primary care doctors because, you know, there’s, you know, no doctors for miles. The story of, you know, hospitals being closed down, you know, which we hear on the news on a weekly basis it seems. Uh, the stories of, you know, even if people find a physical therapist not too far from where they live, this physical therapist doesn’t know anything about MS or refuses to work with somebody who has many challenges due to MS. So these are kind of some of the stories that I hear. And so there’s this frustration that grows because it takes so much more efforts, phone calls, travel to facilities, um, you know, just cost has exceeded with this travel and and time, you know. So I think there’s kind of this growing kind of frustration and this, this desire to be served, you know, the same way that people who live next to big, shiny academic white towers, you know, uh, experience.

[(5:55)]Stephanie: Yeah. Definitely. And I have noticed that too. Um, I’ve always very much admired the independence and the resilience. Uh, but it’s a double-sided coin like you mentioned. And when access is so limited, um, what actually helps, what tangible things help people with MS feel supported and cared for?

[(6:18)]Leorah: You know, I think as a clinic director, I, I think a lot about that. A lot about the things that, that we need to do to be more, um, to be able to serve, um, people who live in rural underserved communities better. And I think that there’s, there’s, there’s different things that are important. I would say that what works first of all from a healthcare provider side is curiosity, inquiring, asking patients. You know, sometimes when you walk in a room, you know, you don’t know you see… You, you know you’re gonna see patients so and so and, you know, you generally have a little picture on the electronic medical record you kind of know in advance what they’re gonna look like. But you don’t necessarily have this, this clear picture of what life looks for them. And I think that the first step to better care for people living in rural and underserved communities is really asking questions and being open to understanding what, you know, the day-to-day life of, of, of, you know, these individuals are like. You know, like being able to know, you know, instead of making recom-, just recommendation and prescriptions you… If you know, for example, that a patient’s neighborhood is not safe to walk in, you know, well, don’t tell them to go walk in their neighborhood. If you, you know, if a person cannot access physical therapy really for 50 plus miles, well it’s gonna be really hard for them to access these services.

So you have to be able to really adapt what your prescription is. So I would say it starts with curiosity and for us as clinicians to, um, to be able to adapt our recommendations to the special needs of those individuals. Um, you know, I have found that, you know, telehealth, you know, this was really catalyzed during the pandemic. We didn’t use telehealth as much before the pandemic. But with the pandemic, it’s really helped us really reach people that normally would fall off, you know, uh, the grid. You know, they would maybe come to the clinic when they have a problem but they would not be able to follow up. Now we’re able to, uh, really, you know, speak to these patients more regularly, keep our pulse on what’s going on with them. And, you know, and so often sometimes when I’m, you know, in a, in a telehealth appointment and I wanna make some recommendations for more comprehensive care for my patients, well, we might spend time together looking, you know, on a shared screen on what resources are available for them. Uh, and try to send the referral to the right place because this is where they think they can drive to. Um, also accessing, you know, in our clinic we have a social worker that can, you know, really help us in, in, in a lot of cases in connecting with the patients, being able to help search for resources, ways for people to access transportation or other ways to, uh, either get to the clinic or get to other, uh, facilities for their care, uh, and that’s also really, really helpful. Uh, but I would say that, you know, without curiosity and without asking the right question we would not even know that people need our help.

[(9:38)]Stephanie: Yeah, definitely. And I think like you said, we often don’t think about the real burden. It’s a very real burden, the travel it takes to get to all of these things, the time and the cost both, you know, gas, bus, transportation costs, but also time away from work, time away from the community. You know, it’s really difficult and I’ve learned that even just being more considerate around scheduling and being flexible or the times that you offer people can do a lot to ease burden.

[(10:17)]Leorah: Yeah, yeah. No, absolutely. And you know, and sometimes it’s, it’s even worse than just, you know, just them needing to drive for five hours.

[(10:25)]Stephanie: Mm-hmm.

[(10:26)]Leorah: Uh, it’s finding someone who can drive them for five hours.

[(10:31)]Stephanie: Yeah.

[(10:32)]Leorah: You know, that’s a story that comes up again and again for me is, you know, some of my patients that do not drive anymore. So it’s not just having to drive themselves, it’s, it’s finding somebody also willing to make that sacrifice and commitment. Sometimes not being able to tolerate like, you know, 10 plus hours of travel plus the time for a visit. Um, you know, and in one day. So having to spend the night and pay for a hotel and, uh, or relying on maybe some family or friends they have nearby. But that requires kind of more than what it would take you or I to just, you know, get in our car just drive 30 minutes to, you know, the doctor’s office, just park, get up, go. You know, so I think there’s really kind of some, uh, even, even just talking just about the transportation aspect of it there’s even other layers, you know, of support that are, that are often needed and that we don’t necessarily think about.

[(11:33)]Stephanie: Yeah, for sure. And so for somebody maybe who’s facing a new diagnosis of MS and they do live far away from an MS center as you said, I’ve definitely heard of people needing to drive for five hours to see a specialist. What would you want them to hear and what have your patients taught you?

[(11:52)]Leorah: You know, I think that what’s, what’s really important for any person with MS is to build their village. It’s all the more important for somebody who lives, you know, who’s underserved, medically underserved. Um, and it will take more time. Um, you know, I would say that it is important to be very open with the healthcare providers that you see about the real challenges that you face. That would be the first advice that I wanna give them. Um, you know, just being open about, you know, if, if a doctor makes recommendations that you can’t follow because of the resources that you lack, speak up. You know, explain what it’s like to live in your shoes. You are the experts at your life with MS. And so I think that’s really being able to have that vulnerability goes a long way. You know, there may be resources you could, you know, your doctors can connect you to. Uh, don’t hesitate to ask for, you know, certain, um, as we said kind of times of appointment that’s work for you. You know, um, or to ask for certain kind of leeway, you know, like a lot of practices have a policy that if you don’t show up on time, then we’re not gonna see you. Well, when you’ve driven three hours and got stuck because of an accident, well, you know, you need to have a little bit of, of flexibility. So being able to speak up and be, you know, express those challenges I think is, is the first thing.

Then ask for help from either your MS doctor or for, you know, or if you don’t have one or can’t get help from them seek help from other organizations, you know, like Can Do MS, the National MS Society, the Multiple Sclerosis Association of America, to try to help you identify, you know, who are the people that you need in your village. You know, if you are newly diagnosed with MS, yes, you’re gonna need a neurologist who’s gonna see you. It’s maybe that you see the MS specialist far away once every few years that needs somebody more closer by. So you need to identify who that may be. You’re gonna need to have a good primary care doctor that can listen to you. And so that’s also and for a lot of our young patients, they, they’ve never seen a doctor, they’ve never been sick. So finding that is also really important. You know, talk to your friends and family, like get your, your emotional village. You know, if you have difficulty coping with a new diagnosis there’s so many resources online now to help support you and, and make use of that because it’s, it’s an opportunity. Um, so I would say, you know, just, you know, think about it as building your village if you don’t know how to start building it engage with the organizations that are specialized in helping people with MS to, to help you understand who you need in your corner. Uh, and, and then use, you know, your vulnerability to be able to express your challenges and what life is for you, uh, to every, every person that you meet.

[(15:10)]Stephanie: Yeah, I think all of those are very important points and you know, through the podcast and through the work I do with I Conquer MS, we have a lot of people in rural communities who have only met their other MS friends virtually who come together in these virtual groups, these virtual meetups, Can Do MS has some virtual meetups as well. And so if you can’t find a community in your zip code there is, as you said, so much benefit to joining these organizations and communities and finding the right one for you, of course, because I think, uh, it can take a couple tries.

[(15:50)]Leorah: Yeah, no, it’s fascinating what we can do these days. And you know, the same is true for us clinicians. You know, sometimes when I have a, a situation that, you know, that I, I, I want some expert opinion, you know, I might text one of my colleague who works on the other side of the US because I know she is an expert at this, right? So we leverage those tools, you know, and, and I’ve seen so much good, you know, that comes out of these virtual groups and there are even, you know, physical therapists that do PT online, there are, you know, mental health specialists that see you online. And then yes, all these meetups, these groups is support, um, which is fantastic, you know. So that’s definitely something that’s, that everybody should, should be looking at. And I would argue that even people who are, you know, who have access, you know, uh, those can also be incredible resources for them.

[(16:41)]Stephanie: Yes, definitely. So when we talk about time to diagnosis or time to starting treatment, how does MS Care look in the rural setting versus maybe a more urban setting close to a center?

[(16:57)]Leorah: Yeah, yeah, that’s a great question. You know, I, I, you know, this time to diagnose and term to first treatments are two extremely critical, you know, points for someone living with MS. That can make or break their journey. And um, you know, so if you think, for example, about the time to diagnosis what needs to happen, you know, if you look at that journey, what that journey ideally would need to look like. You know, first, you know, people develop new symptoms they need to be aware that this may be something they need to speak care for, you know. So the person who’s experiencing the symptoms need to be… Need, need to seek care. You know, then they might see a primary care doctor, for example. And that doctor needs to also be activated and say, oh, this may be MS. And then what and need to do the right test. You know, the case being an MRI for most, most patients. And then after that MRI, you know, the results have to be communicated and then the person needs to be addressed to a neurologist and the neurologist needs to be activated enough to start a disease mod-, to confirm the diagnosis and, and, and, and start a disease modifying therapy. So there’s a lot of people involved in that journey, you know. And, um, and, you, you may take somebody who, um, has good insurance, is well educated about, you know, their, you know, medical things in general, lives in an urban area.

That journey can be really short. They have new symptoms, they go see, they go to the emergency room or see a doctor, uh, they get their on getting their MRI, even if the doctor doesn’t, you know, think about it. Then they get the MRI, they find the neurologist. They already know that journey can sometimes just take days, you know. When you’re talking about people living in rural and underserved area, what does that look like? Well, it might be that, you know, they go to a local hospital where there’s no neurologists. You know, and their symptoms are ed, you know, like their leg is weak. Well, maybe, you know, sciatica go see your primary care doctor, wait a while while the patient ends up staying in bed for, you know, a while, and the symptoms resolve and they never go see anyone again. You know, and, um, so that journey is, is stopped, you know, in its track. You know, then they might… The symptoms kind of might continue, they might go talk to their primary care doctor after that visit and they’re really bothered. But they might, you know, again, doctors very busy. They take care of a lot of people.
There’s not a lot of resources around all of the other medical practices around have closed down. They see 45 patients a day. You know, they have five minutes. They’re like, you have one problem I can address with you today. And same thing, you know, might be blown off or then they, or best case scenario, they might be like, yeah, this is weird let me order an MRI. Well where is that person gonna do their MRI? They may not have insurance. They might have an insurance where they have high copays and the, the MRI costs thousands of dollars they don’t have. Um, well, you know, they learn to live with it or the symptoms improve and they move on, you know.

[(20:18)]Stephanie: Yeah.

[(20:19)]Leorah: So this is kind of all of these delays, you know, and it’s, it’s subtle but when you think about, you know, just, just, you know, again, the lack, lack of access to cares mean doctors are more rushed. It means that there’s less access to specialized care like a neurologist. That means that there are less, you know, facilities to do MRIs. That means that the neurologist that you see may not know what was said at the last MS conference about the diagnostic criteria of MS and not even think of putting up the MRI on the screen. You know, and you know, it’s, that’s, it’s that whole sequence of events, you know. So we need to…

[(20:57)]Stephanie: Yeah.

[(20:58)]Leorah: …start removing these barriers and first educating people, you know about what, you know, what you have could be MS. You know, how does…

[(21:07)]Stephanie: Yeah.

[(21:08)]Leorah: …MS manifest. You know, what is MS? You know, we need to educate primary care doctors and frontline, you know, healthcare workers to recognize the symptoms in any setting so that if you see in in urgent care doctor who’s seen two MS patients in his whole life, they can still think about MS. You know.

[(21:28)]Stephanie: Yeah.

[(21:29)]Leorah: Then we need also neurologists who are up to date. Who are not afraid of making a diagnosis and who are not afraid of treating people with MS with high efficacy treatments. And that will take time.

[(21:43)]Stephanie: That will definitely take time. I feel like there’s so much awareness about the signs and symptoms of a stroke, of a heart attack, um, that you know if you experience X, Y, Z to seek medical help immediately. I’d love to see that in MS because almost everyone with MS lives in these areas of the world that don’t have ready access to an MS center. So I, I am on board with you and your education campaign and, and making sure every healthcare provider really does understand how MS comes about because we’re living in a day and age where it’s easier to diagnose and it’s easier than ever to get people on treatment regardless of insurance status or socioeconomic status. Um, and what a, what a lost opportunity it is to have this technology and these amazing treatments and still have people taking so long to get to that diagnosis.

[(22:45)]Leorah: Yeah, no, it’s, it’s fascinating. You know, I live in Texas and we’ve been doing a lot of research around, you know, what’s happening in our state. We have, you know, the most diverse state in, you know, one of the most diverse state in the nation. You know, half of, you know, Texas counties are medically underserved. You know, we have a very large state, meaning that we have long distance that people need to travel for care. Um, you know, and, and some of the data that we’ve been pulling out, you know, shows that at year one only you know, about 20% of people with… Who’ve been diagnosed with MS by the end of year one, only 20% are treated with a decent modifying therapy. So it’s super humbling. Um, it’s, you know, as a clinician, you, you feel good at the end of a clinic day you’re like, done a good job, you know. But then you see those numbers and you’re like, Nope…

[(23:40)]Stephanie: Nope.

[(23:41)]Leorah: …there’s, there’s so much we need to do, there’s so much, you know, so much education and help on the ground that needs to be provided so that, so that we can improve these numbers and pro-, provide access to these wonderful wonderful drugs, you know, to our patients and, and improve their outcomes.

[(23:59)]Stephanie: Yeah. So, so what innovations and models of care do you think will help bridge those gaps in the future?

[(24:05)]Leorah: You know, I think for me, I think what I… The, the… There are two, two… There’s a debate, you know, in, in our community. Some, some, some folks are, you know, wanna say we need, we need every person with MS to be able to see an MS specialist. You know, so that’s, that’s is their model. You know, we just need to find a way for them to see an MS specialist. Well, then there’s the realists like myself, who think there’s not enough specialists in the US, you know, for every person, from every community to be able to see a true, you know, fellowship trained MS specialist. And so I think that what we need to develop, and that’s kind of, you mentioned stroke earlier kind of what stroke has done is developing these networks of care, you know. Which is where we have connections, you know, at the regional level between, you know, specialist centers, centers of excellence, and, you know, general and community doctors, whether neurologists or primary care doctors. We need to be able to build these networks very organically at the community level so that communication can evolve very fluidly. So that’s wherever patients, you know, is seen, you know, if, if they need, you know, very subspecialized expert opinion they can get to that opinion very quickly. But otherwise, the specialists in their communities have benefited from the connections with, with us as specialists and feel ready to manage these patients where they’re.

So I think we need to develop more kind of networks in, in, in our communities to support our patients. I think that we need to continue developing, um, virtual options for care, um, and, uh, opportunities for patients to access not just neurological care, but again, physical therapy and others, um, you know, mental health, uh, in, you know, from their home, um, because travel is, is a limiting factor. Um, you know, I would like to see, you know, us also, you know, always instead of thinking of like, people need to come to us, how can we come to them, you know, physically as well, how can we have more, you know, resources available in all communities? You know, how can we, you know, so that they can access it, whether it is at the grocery store or the pharmacy or the little local community center. How can we really also, um, create more, um, more programs locally that remain in person because people need that in-person connection for their care too. It cannot be all virtual. But I would love to see more, um, uh, kind of neuro friendly, uh, education programming and others, uh, in, in all communities through, you know, again, grocery stores, you know.

[(27:09)]Stephanie: Yeah.

[(27:10)]Leorah: Or, or community centers. You know, they already… You know, when you think about it, pharmacists are already vaccinating and doing all kinds of stuff. Grocery stores sometimes have, you know, nutritionists, you know, who work with them. You know, why not have more offerings, you know, in, in unique settings so that we meet those communities where they are.

[(27:30)]Stephanie: Yeah, and I, as you’re talking, I’m thinking this is all great for rural and underserved, but really this is a great model for everyone living with MS. I mean, the, again, the time and the energy it takes to just get through day to day for all of us with MS is tremendous. And I, I think the medical system, um, doesn’t fully appreciate what a burden it is for all people living with chronic health issues to always having to travel to a point of care and instead of delivering care where it’s needed. And I think that’s exactly what you described and I know that would make my life a heck of a lot easier.

[(28:14)]Leorah: I know, I know. It would be great. I mean, being able to develop this kind of thing at scale would be really huge. You know. ‘Cause as you say, we have a lot of people who, yeah, I, I work in downtown Austin, you know. Some people who, you know, without traffic left 15 minutes away can hate coming to see me.

[(28:33)]Stephanie: Yeah.

[(28:34)]Leorah: And they wish I, you know, either I was closer to them or, or there was other ways for them to be seen or to get, you know, to get all of the, um, you know, kind of the thing that make them healthier. Get access to that, uh, in more convenient places.

[(28:53)]Stephanie: What do you want people living with MS, especially those in these rural and underserved areas to know about their strength and their value in shaping better care?

[(29:02)]Leorah: I want them to know that they have a voice. I think that, that there’s a shift that is occurring in our healthcare system. Where the more and more patients are recognized as, as experts. We have come from a very paternalistic framework and we are really into, uh, a more patient-centered approach. And I think that speaking up matters whether it is to your doctor or online and sharing those conversations. Like I’m on LinkedIn a lot and you know, and there are a lot of people who live with MS four on LinkedIn and, and that contribute and, you know, send me messages and, and share their experience. And I read their experience and I love reading their message. And, you know, and I think that this matters so much because it’s, you know, it, it opens up, you know, it opens us up to so many ideas of how we could shape care differently. So I think, you know, what I want them to hear is that your voice matters, make it heard and be relentless. And if somebody doesn’t listen, they’re find somebody who will. Because…

[(30:24)]Stephanie: Yeah.

[(30:25)]Leorah: …you know, those who don’t listen, they’re the problem.

[(30:28)]Stephanie: I agree with that a hundred percent. Thank you for that message and thank you for being here again to talk with us. And I look forward to the next time.

[(30:39)]Leorah: Anytime. It’s a joy to see you today. Thank you.

[(30:42)]Stephanie: Thank you. Thank you for listening to this episode of the Can Do MS podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do Ms podcast. Until next time, be well and have a great day.
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