Rural Health Fractured: Understanding & Expanding MS Care in Rural Healthcare Deserts

Jeremiah Hodshire (Host): Welcome back to Rural Health Today and our latest series, Rural Health Fractured. This series were discussing how rural health is being fractured in nearly every direction by the politicization of health and science, the decline of resources for rural communities, deterioration of adequate insurance coverage, and so much more. As we take a closer look at the fault lines in our healthcare system, our guest will provide new perspectives on how healthcare leaders can navigate these challenges and explore sustainable solutions.

Now I’m in the studio today, and I’m absolutely thrilled and overjoyed to have a very special guest with us. In fact, someone representing an organization that we have never on this podcast spoken with before. So, I’m excited that this is our first opportunity. It’s great to have in this studio, Alana Skye Campbell, and she is the senior director of healthcare access at the National Multiple Sclerosis Society. And we have never had the privilege of anyone from your organization, on this podcast. But it is such an important topic that we can’t neglect it. And we must really address some of the issues that we’re facing in this area. And so, it’s great to have you here for your first podcast, on Rural Health Today. So, thank you so much for joining us. And if you could just give us a little bit of information, about your role at the National Society and how long have you been there? What brought you to the organization? And ultimately, why did you choose this field?

Alana Skye Campbell (Guest): Thank you so much, JJ, for having me here today, and especially on behalf of the society, we have so much appreciation, for the opportunity to highlight the critical issues facing rural health, and particularly through that lens of individuals living with multiple sclerosis. So, I started at the society about a year and a half ago, and my role is really centered around initiatives that aim to improve access to care for people living with MS, particularly in medically under-resourced and rural communities. And it’s all about making sure people in those communities can access the care that they need. I always say, if there’s one deeply held belief that I have, it’s that everyone should have the opportunity to attain their highest level of health. So, I’ve always been involved in some area of work revolving around that deeply held belief. And the society, you know, their mission is to empower people affected by MS to live their best lives. And I came to the society because I wanted to be a part of a team that was really working to remove those barriers and create opportunities, for better access to quality care.

My interest in patient advocacy actually really stems from my clinical experience. I have a registered nurse background, and my first exposure to working in healthcare because funny enough, I used to say I’m never, ever working in healthcare. Well, we see how things evolve. I was trying to figure out, is this something I want to do my interested in moving into nursing. And one of my first experiences working in healthcare, was working as a nurse assistant on a med-surge unit in a 25-bed critical access hospital. In rural Vermont. And that’s really where I affirmed my interest in nursing and went on to get my bachelors of nursing degree and my nursing license. And when you’re in nursing school, everyone is I wants to go to the ICU, OB, emergency room. And, you know, I felt that there were a couple of us, but I was often the outlier, which was I wanted to do community health nursing. And I went into my nursing degree knowing I wanted to do that.

I came out immediately working in community-based support and stabilization services. I was working with adolescent youth, I went on to work at a federally qualified health center, in family medicine. So, I always wanted to do that primary care, preventative, earlier intervention work as a nurse. And I think what happens is you spend enough time working, you know, in the clinic setting, and you start to see these flaws. You start questioning, well, why are things the way they are? And I really felt compelled to really understand that public health perspective. I was working with patients that were very sick, facing barriers to care, stigma, and I wanted to dive into understanding how are we protecting the health and safety and well-being, that well-being piece of communities and populations.

So, I went back to school. I got my masters of science in nursing in population, in public health, and I was thinking about the title of the this, this podcast, which, you know, Rural Health Fractured. It’s a discouraging moment, to be working in public health and population health. And I had a mentor, Joanne Costello, in my graduate program. She said things might get hard, but she instilled in me this constant sense of, like, positivity and the belief that nurses can affect change and that even if it’s super incremental, the work that you’re doing matters. And so, I feel like through all the challenges, I’ve kind of tried to maintain that mindset that Joanne instilled in me because I think we know there’s dissolution of infrastructure. I mean, we’re seeing closures, right? There are so many challenges right now. So that’s you know, that’s kind of how I got to be here at the society, kind of an evolving journey.

JH: We’re going to dive into some of the things that you mentioned in your intro, about the impact on rural and some of those specific concerns that you brought forward, in the body of our, podcast. But one of the things that we like to do is we like to humanize our guest because we have listeners across the country, across the world. I mean, several of our friends in Guyana, tune in to this, and we have folks that are listening who may not know you as an individual. And so, it’s always good to humanize so that you’re not just this scholarly RN.

So, one of the things that we ask is, a little bit, you know, personal an interesting fact about yourself. Now, we’ve heard it all. Everything from, you know, I’ve run marathons to I fell down a mountain, you name it. But I want the listeners to get to know you as a person a little bit better. So, what’s a fun fact, about Alana?

AC: So, prior to becoming a nurse, I actually worked in sustainable agriculture for many years, so I was growing food and raising animals for meat and dairy. I initially started working on production scale, so acres and acres of onions, weeding acres and acres of cabbage. You know, it really started at that scale of growing food on a production level. And then I found through that work that it was really a very therapeutic and reverent practice for me. So, I started thinking, how do I reach this and start working with people? And I moved on to doing farm education. So, I worked with school age kids, where they got to come and work on the farm and do things like barn chores and forestry. You’d have them doing, you know, during sugaring season, they get to come out and collect the sap. So, yeah, I transitioned into doing plant-based work with people and I also worked on a memory care unit, with people living with Alzheimer’s and dementia doing horticultural therapy. So, yeah, I’m no longer living and working on a farm, but I love plants. I keep a large, large garden, even though I live in the city. And I will say it’s a constant fight with the squirrels. They eat my cherry tomatoes.

JH: Oh, we know what that’s like. We have a family garden and it’s. It is practically like a quarter of an acre of everything. But every year I have to go out to the in-laws, and we spend a day getting it ready to safeguard it from all the animals, because we have deer and we have squirrels and all of that stuff. But there’s something just therapeutic, as well as just sustainability. When you go out and just pick yourself some tomatoes and some corn, and then the ability of any overflow to contribute that back to your community, that may be in need. It’s really a great feeling. And so, it’s great to know that you’re one of us, you know, in the country rural side, that have a farm and that have a garden and that you’re creating sustainability. So that’s a great that’s a great, interesting fact about yourself.

So, interwoven into your job today, obviously you’re cultivating quite a bit, you’re planting a lot of seeds and you’re working very hard. And I want to get into that today because we have heard this phraseology of healthcare deserts. And we’ve heard it in the context of other programs like maternity deserts and deserts of care. And you know, what we’re talking about today is also deserts in rural America, and how access to local healthcare impacts the diagnosis and treatment of specific medical conditions, because there’s a lack of access to primary care or to specialty care, or there is no OB at all except for 100 miles away.

And so, I’m excited that you’re here today to share your perspective and insight on healthcare access for multiple sclerosis care and treatment. And we’ll talk about barriers to receiving care and treatment in a healthcare desert, and the impact of limited access on the well-being of a community, and, of course, what all of this has to do with rural health in America.

I’m excited that you’re here today to share your perspective and insight on healthcare access for multiple sclerosis care and treatment. And we’ll talk about barriers to receiving care and treatment in a healthcare desert, and the impact of limited access on the well-being of a community, and, of course, what all of this has to do with rural health in America. So, I want to jump right into, you know, the heart of some of these issues. And, let’s just start with the basic question; how and why does a community develop into a healthcare desert in general? And why are rural communities, which is a large, you know, landmass of our country, uniquely, susceptible to this? Can you, can you give us a little bit of background about that?

AC: It’s complicated. There are multiple factors that contribute to a community developing into a healthcare desert. And I do think we have to try to look at that whole picture. The first thing that comes to mind is we know that geographic isolation piece, by nature of where they are rural areas are often farther from medical facilities, and that makes it difficult to access care. We know there’s limited public transportation, so there may not be a bus line or a rail line to get to the care that you need. And we see through the society’s work, people are more likely to have to travel long distances to access those services. And we see this with MS specialists in our work. We also know there’s limited economic resources. So rural communities face higher rates of poverty and unemployment. And with a lower income level, that’s fewer financial resources to access healthcare. We know that when one’s looking at their monthly finances and they’re saying, okay, am I going to pay rent this month, buy groceries and put food on my table, or am I going to go get that blood pressure check or see my primary care or see my specialist? There are often more pressing needs and people may be postponing medical care because of those higher priority needs.

There may be shortages of medical professionals. Recruiting and retention of healthcare providers in rural areas is is challenging and that can lead to those gaps. And I often think about when we’re considering workforce development and thinking about these shortages of medical professionals, I do think we have to think about equitable access to education. And even at those earliest stages, such as grade school, because what do those pathways look like for students in rural areas into health professions? And transportation can be expensive. It can be logistically complex because students are more geographically dispersed, which may drive expenses away from educational initiatives and supplemental programs and learning experiences. And that may limit, in the long run, career pathways into health professions.

The society has been partnering with Area Health Education Centers, AHEC. But with them we’ve been working on reaching pre-college level students. They create pathways for students that may not have otherwise seen or had opportunity to do so. So, we’ve been working with AHEC to try to increase knowledge around MS. Because that piece of recruiting and training and retaining those healthcare professionals is so important in rural areas.

JH: So, in the context of, rural health, in looking at it from the lens of what we call social determinants of health, we know that those deserts that you’ve just described, all the barriers, whether it’s transportation, income, all of those are barriers. Before we jump into MS specifically, can you talk to us about how patients seek care in those environments, and when you think about the social determinants of health, what impact does that have on their long-term health? Because that’s really what we’re targeting right now.

You know, as we look at what are the long-term impact of readmission rates and higher acuity, and patients presenting into the E.R. because they don’t get the primary care that they need early on. So, you know a lot of let’s talk a little bit about, what you work in specifically every day. And that is, the passionate work that you do around MS education, awareness, treatment, those types of things.

So, you start with an understanding of MS in general. And, you know, we know that there are many patients in rural communities and urban, but we’re focusing on rural; the question of do patients living with MS and other chronic illnesses in rural communities experience additional barriers to receiving care and treatment? And, I think I know what that answer is going to be, but then what has the society’s research, you know, on the neurological, in multiple sclerosis deserts uncovered?

AC: So, I think even before launching into the research, it’s important to understand what MS is. And how it presents. So, MS is a chronic immune mediated disease of the central nervous system. So, it affects the brain, the spinal cord, optic nerves. And multiple sclerosis literally means many scars. So that’s the lesions that accumulate in the brain and in the spinal cord. And so, it disrupts the communication from the brain with the rest of the body. And what happens is depending on where those lesions are, people can experience a wide range of symptoms. So, it could be vision changes, mobility changes, fatigue. It’s an unpredictable disease and it’s lifelong. And there’s no single test for MS. So, the diagnosis is a process it relies on, neural exams, MRI’s, ruling out other conditions.

But what we know from decades of research is early diagnosis and early treatment does lead to better health outcomes. So, we have seen a lot of progress around our disease modifying therapies. And we know that ongoing specialty care it significantly slows progression. But when we’re thinking about rural and how people receive care in rural areas, and when we’re thinking about MS, time matters. And geography often determines time. So, part of our work, we know the sooner the diagnosis, the better the outcome. And we want to build urgency around that messaging. But we recognize in rural areas there’s barriers to receiving that care and treatment.

So, there’s simply not enough MS specialists and neurologists in rural areas to make that diagnosis and provide that specialized care. We have our desert map. So that desert map is an interactive dashboard. What we did was with Deloitte, we mapped out access to neurologists and MS specialists across the U.S, down to the county level, where we can see based on what county you’re in, do you have limited access, full access, or partial access to a neurologist or an MS specialist? And that dashboard shows that only 13% of those in rural counties have full access to neurological care. And then we also know 83% of people living in rural counties reside in MS specialist deserts. So, we look at both neurologists and then the subspecialists. So, we see that people in rural areas are disproportionately impacted by that access issue.

JH: We find that regardless of the modality or the service line or whatever the ailment is, is that, the diagnosis that comes in for a cancer patient, for example, the lack of transportation to get to a cancer center, limits their ability to seek treatment, maybe even in a timely manner and those become very important issues in your area of MS, you know, advancements in treatment, diagnosis. Where do you find that today? I mean, do you feel there’s some good breakthroughs? Do you feel like it’s still a huge barrier?

And then on another level, we’ve got a lot of challenges at the federal level about how we’re funded and research and development. I do want to focus a little bit on that, if we could, because the work that you do is also looking at you have to do research and you have to have, you know, funding to be able to do specific research. And a lot of that research, in funding right now for that research is in limbo. The federal government is making other priorities with healthcare, research, cutting universities and other things. So where does that all fit into what you would define as any advancements in, you know, the, the field of MS.

AC: It used to be when you received the diagnosis, there were very few options for people receiving the diagnosis. It was, well, go home, get your affairs in order. This is a progressive neurological disease and we can’t tell you what’s going to come next, but it’s not going to look good. And we just know now with the disease modifying therapies, people live long, happy, healthy lives. That being said, our goal at the society is to find a cure. That’s the aim. We invest in research. Our, goal the cure for and I hear the CEO saying we’re getting ever closer, you know, in our lifetime, hopefully we will have a cure. But I still think, we have a way to go. It’s still evolving. But initially there were very few options for treatment, and now there’s something like over 20, options for MS treatment.

JH: And just so I understand this in our listeners too, it can slow down the progress of the disease. Is that correct? What you know, methodologies are we using to do that?

AC: So, once you have lesions, we can’t go back and get rid of those lesions. But the treatments act by slowing progression. So, slowing the demyelination of the nerves in the central nervous system. So, it slows progression. And that’s why to get back to my earlier point around, you know, earlier recognition is so important because the sooner we can get that diagnosis, the sooner someone can have access to that treatment, the better. Because it slows that progression.

JH: Let’s transition a little bit into the specific work that you’re doing, at the center. Can you explain to us how you’re funded and what that process looks like? Because we’ll certainly put a shout out for any type of funding needs that you may have. We have a lot of listeners across the country, you know, what does that look like for you? Are you heavily dependent upon federal funds? Are you dependent upon donations? Are you in a research center that is supported by a university? Can you give us that background?

AC: Our work within healthcare access is not federally funded. So right now, our MS care desert initiative that’s through a membership with Genentech. I do know that we work with many researchers that are, connected to federal funding streams.

JH: And if you were to look at education and look at it from the lens of what should providers in rural communities be doing? And I guess, what could they do differently? What advice would you give them, to care for patients living in the rural healthcare deserts as it relates to the topic that you know best, which is MS?

AC: So, I like to say we need to get outside of our neurology box when we’re talking about MS and the rural setting. I do think it’s important that every healthcare professional play an active role in supporting and providing care for people with M.S, but also in decreasing that time to diagnosis. So, some of our strategy has really been to engage all these different health professions types. So, community health workers, primary care providers, rehab therapists, visiting nurses, we really see reaching all of these different health professions as a way of generating opportunity for all your recognition. Because we know in rural settings, the neurologists and the MS specialists is often way down the road. It’s really often someone’s presenting to their nearest rural health clinic or they’re FQHC, or they’re going into their closest critical access hospital and they’re presenting with those symptoms.

So, we really want to educate and engage those rural health providers and all those different professions types. And I think what we run into with MS is we’re not as common as other conditions. We’re not a rare disease. We’re not categorized as a rare disease, but certainly we’re not as common or prevalent as other conditions like hypertension or diabetes, heart disease. There’s around 1 million people living with MS in the U.S and I think sometimes and when we’re talking to these different health professions tied to it’s like, well, what does this have to do with me? And the care I provide? And, you know, we’re trying to raise that awareness, encourage all these different audiences to think of MS, to consider it.

JH: What would you say to empower community members and community leaders who may be listening to this podcast? What can they do to raise awareness or to be part of the solution for the work that you’re doing? At the center, what do you need from the community? You know, what do you need from your hospital community? But what do you need from the community in general?

AC: I think to become familiar with MS, I think a lot of folks are just not familiar with it. To make it feel relevant, to these different administrators and hospital systems and community health clinics and, because recognizing there just there’s so few neurologists and MS specialists that it requires kind of an all hands on deck approach, it isn’t something that within rural settings, we can quickly refer to your neurologist because we know those wait times are months, several months, nine months, 12 months, depending where you are in the country, we hear about a significant delay.

JH: Much like most of rural America, Hillsdale lacks the ability to have an infrastructure that supports the ability for patients to be transported beyond maybe even a 4- or 5-mile radius within a small community. And so, you rarely have county wide transportation. You certainly don’t have statewide transportation. So, when you get these small hospitals that may refer more of this type of specialty disease, you know, approaches to university hospitals or to tertiary centers that are 200 miles away. And so, they can’t get there. So, the barrier to transportation is one aspect. But then the other aspect is they’re filled, and you wait for a very long time to get the appointment.

And that is something that we’re trying to raise awareness, you know, for med schools. And the harder the government makes, by not give you an education, loan reimbursement to physicians and not giving a stipend and forgiveness and consideration to those who go to rural communities. All that stuff is getting rolled back right now. That’s a problem. We’re going to find even greater, amounts of care deserts in our rural communities than we’ve ever known possible as a result of some of these legislative actions that have taken place. So very, very concerning. We’re not any different than our counterparts. Maybe, a state away. That has the same, you know, demographics, but it is something to be of great concern. Which is why we always raise the understanding that we have to get involved as citizens in educating our legislature and our elected officials about the importance of programs for physicians to get the training, as well as for research and other things.

And so, it’s going to be a fight. It’s a fight ahead of us right now in Congress it’s a fight ahead of us and states across this union. But I believe as we look at history judging us, we’re on the right side of history and we just continuously have to fight for that. So that becomes the challenge.

AC: And we need to create incentives for individuals to train as neurologists and then also go practice in these rural communities, as you’re talking about those 200 miles, another thing from our dashboard, one of the areas that we’re working right now is Wisconsin. And we know the average driving distance in miles; it’s 205 miles to your nearest MS specialist. And it is not uncommon for us to be hearing people traveling for hours, five hours, six hours, to get to their closest MS specialist. And then you think of that layered with having to manage a disease such as MS. That’s a tremendous emotional and physical burden. For those that that have to make that sort of trek to get the care that they need.

JH: In the show notes, we’re going to put you know, information about how individuals can contact you, and your organization. I think that’s important. I want to end, our podcast. It’s hard to believe our time is already upon us. But, yeah, I want to I want to end the podcast with a couple things. First, what are you excited most about in the work that you’re doing right now? But maybe it’s the future. Maybe it’s a project you’re working on. Maybe it’s just like something encouraging, because in this series of fractured, we get a lot of bad news. We get a lot of forecasting of what the federal government’s doing to us, what the respective states are doing to us. But what what’s exciting for you right now in the industry that you’re in?

AC: I appreciate you saying that because I was also thinking about, I feel like we hear about that geographic isolation piece. But we also know rural communities are deeply connected, deeply connected to each other, deeply connected to place. So, I think we always have to keep both things in mind, right. Because there is a lot of stories of, oh, this is going away and, and whatnot. But also, there’s much to celebrate. And I think in my experience speaking with clinicians practicing in, in rural areas, there’s so much resilience and commitment, dedication and all these wonderful things to do. But what I am excited about is I think we are leading some great initiatives.

I think of the work we’re doing in Wisconsin with a group called the Wisconsin Collaborative for Healthcare Quality, where they’re using, clinical data from health systems within Wisconsin. It’s this really great model where they have 27 health system members that have shared their clinical data with the idea that by sharing that data and having that understanding across health systems, we can really impact change and drive quality improvement initiatives for Wisconsinites. And we’re currently mapping out diagnostic timelines across these different member systems. And then we’re going to be putting together a digital toolkit, a summary report that we can share out across communities, health systems, policy makers. So, we can say this is this is where there’s opportunities for improvement. And these are some ideas we have around how we can address these barriers in rural areas.

JH: Gardner by heart and builder by profession because you’re building something pretty incredible. And it is looking at you know, something that we don’t often focus on in rural hospitals because we’re worried about general surgery and we’re worried about the air in the OB, but specific disease types. And then looking at MS in the work that you’re doing with it, you’re doing a tremendous amount. And I want to thank you for your contribution, which whatever you do there multiplies, you know, to all communities across the country, because you’re not just in an isolated little area in a bubble. You’re producing, you know, information out to the masses. And so, continue to keep up the great work that you’re doing. One of the things that will end with today is we always just really take the pulse and the temperature of leaders across the country.

We know we’re in tumultuous times, and we have a lot of new leaders that have stepped up into leadership roles during the pandemic and post-pandemic. And there’s a lot of challenges, federal funding, negotiating with insurance companies facing disease states that, you know, we just don’t have the resources to address. And the list goes on and on. But, for each of our guests, we just like to ask them, what is your recommendation that you would give, to someone who may be new into healthcare and who has that passion, who may need to temper that at some level. But, you know, it can get very discouraging if we go 200 miles an hour and we’re just always restrained by great fires.

So, it could be a tip for someone new in, healthcare. It could be something that’s a piece of sage advice that you would give on thriving in a rural setting. And we add these recommendations as a guide for our community, which is comprised of leaders across the country, to get on and to learn just a little bit more. You’ll find it at ruralhealthtoday.com. Alana what is your rural health recommendation for someone today?

AC: I would like to speak to rural health professionals. And I think about my experience as a nurse and I think it’s really important when we’re working with patients, that we meet them where they are, and we listen to understand what may be getting in the way of them achieving their best health. And I, I really stand by this with that careful and close listening allows us to get at the root cause of what’s getting in the way. And I think sometimes we hear things like not non-adherence, noncompliance. And why is this happening? And why isn’t this patient showing up and they’ve been a no show, or they’re coming to the emergency room. And, you know, I think we really have to listen more closely to understand what’s getting in the way so we can provide that better, more person centered, patient centered care. So, I think that would be the little nugget I’d like to say is to really meet people where they are and always start by listening. And I think that could apply not just to rural health professionals, but also legislators everywhere.

JH: Great opportunity just to stop and listen. When we meet people where they are, we tend to connect more. We tend to humanize; we tend to find that we can build connections. But when we go in with just preconceived ideas and avoidance, it never works. So great advice. Alana thank you so much for joining us today on Rural Health today. It’s been great, to learn a lot more than we’ve ever known about, the work that’s been done, by you and your organization and about MS in general, and certainly a lot of opportunity for awareness in our rural community. So, thank you so much for joining us today.

AC: Thank you so much for having me, JJ.