Episode 2, Part 2: The Long Road to Treatment

I almost didn't go to college, to be totally honest. I was thinking I would just stay and either become the sheriff or become a law enforcement officer and I'd love living in small towns. I'm a country mouse by nature. So, I say that with all the love in my heart about rural people. We cope with all of these access issues by saying that the resources don't matter, so then for those of us who are trying to help rural populations, that's the first barrier we face. They're going to reject resources and they're going to reject them because they've had to learn to live without them.

The first step in accepting that resource is accepting you haven't had it and that that's likely caused a lot of real heartache within your community. It's much easier to just say cancer is inevitable and it's part of life. Rural people are more prone to say things like, “Well, everybody dies of something. Well, you gotta go some way. Right?” And we often say this to justify very, very poor behavior, by the way, and to justify why, well, okay, here's an example of just sort of the extreme nature of rural life within the Intermountain West. I, at two different points in my life, have had cancer removed from my body and neither instance, did I ever interact with a dermatologist or with an oncologist. I now work with dermatologists and oncologists on a daily basis but at no point in either of my cancer journeys, both of which were melanoma, did I ever even talk to a dermatologist or talk to an oncologist.

Heather Simonsen: Wow, I mean, that is sobering, and especially since we know there is so much you can do, as far as like wearing sunscreen, eating a healthy diet, regular exercise, getting regular cancer screenings, catching it early, when it's most treatable. But there is this disconnect, as you say, between these proactive steps. Does some of this have to do with trust? A lack of trust?

Jakob Jensen: I think so. Again, that can be a coping mechanism but it can also be so much of our discourse is focused on the city mice, is focused on the cities because there's so many more people there. That's where a lot of our communication comes from. Here we are sitting in Salt Lake City and I think it's very easy for rural populations to feel distrustful because they feel like they're outsiders. I think today they sometimes feel like there may be villains, that they're portrayed, maybe negatively, and problematically, and that leads to trust issues, that leads to disconnect. It’s something that we're really focused on at Huntsman Cancer Institute, is thinking about, as we try to serve all the populations in this very large Intermountain Region, how can we start building trust from the onset? I think that's about them seeing us, and hearing us, and knowing that there's a large number of us that come from this region, or come from similar areas and walks of life. They’re not unknown to us. We are thinking of them. We are part of their community.

Solutions to mistrust in rural and frontier communities (18:07)

Heather Simonsen: And that goes beyond just, taking our screenings to them. It's more about connecting on a friend level, you know, them seeing us at the county fair, right? Talk to me a little bit about the importance of kind of thinking outside the box in in coming up with solutions.

Jakob Jensen: Yeah, I'm so glad you mentioned being at the county fair because that's been a deep part of our conversation up at Huntsman Cancer Institute. How do small towns perceive outsiders and how can we engage that? What I have said from the start is, you have to think about rural communities. I think within the Intermountain Region, we should also be thinking about tribal communities in the same way, by the way, most of which are rural as well, as communities that often have a lot of predators that come after them.

They get preyed on a lot. They have outsiders come in who do not have their best interest at heart. They learn to be defensive. They learn that even, and when I say don't have their best interests at heart, sometimes that's even good people that arrive to rural communities in the wrong way. We're there because there's something we want and then when we get it, we're gone and they never see us again. This is sometimes the first thing they say to us in conversation. “Well, is this going to be one of those situations where there's something you want and the moment you have it, you're gone? Like, is that this interaction? Or is this something else?” Unfortunately, there's just a long history of us doing that.

When I say us, I mean Huntsman Cancer Institute, but I mean, all researchers, pretty much anybody from outside of rural communities. This is unfortunately, the track record we've left behind, so they understandably feel that way. Circle is also right by several tribal communities, for example, Wolf Point, Montana and Poplar, Montana, you have Assiniboine and Sioux there, and several other tribes. I also have that sort of lived experience. I would say that's the same kind of feeling you get there, they'll say, “Okay, is this a situation where there's a meaningful relationship? You want to develop it? Or is it just you need something?” That’s almost the biggest criticism is, you know, I once said the most damning statement that a rural person can make about you, is that they think you're there because you need something. It's a statement that says, “They don't think you're genuine.”

Then how do we start to come in a different way? Well, we should be present when we don't need something. Rural people really put a lot of stock into who shows up to the county fair, who shows up to the district basketball tournament, who's here for Town and Country days.

We did an American Cancer Society event where we did like a walk to raise money for breast cancer, who sponsored that, who showed up to it? It really means a lot in rural communities. I said to Huntsman Cancer Institute, I said, “Look, if you want to meaningfully engage these populations, you have to be more visually present.” As a sort of silly, but true example of that, I go back to the county fair and Circle every so many years, because I love it, I have a lot of stories about it, but I go back there, every couple of years. One year, I came back and I decided I wanted to study some things in in my hometown. I set up a booth and we were collecting some data, then I left the University of Utah Huntsman Cancer Institute sort of pop-up tent behind, I just donated it to the fairgrounds.

They continued to use it in the years that followed and I didn't even really think of it when I did it. Then, of course, you know, a bunch of kids grew up in Circle where they were seeing the University of Utah and Huntsman Cancer Institute all the time, so then the next time we came calling, there was increased awareness and openness to it. Of course, they knew I was there, but they were also, “Oh, yeah, like at the fairgrounds, I see the Huntsman tent all the time!” I thought, right, even though it hasn't even been us, they’ve seen it. I thought, “Okay, well, there you go.”

There's sort of brand awareness, and that's presence and that's a company they know, that's a brand that is in the county. It’s a silly example but it's the kind of thing that I think rural people put a lot of stake into and I'm hopeful that under this next leg of our journey, we're going to invest in that. I think there's some really creative ways that we're kind of planning to come at that and really engage those communities. It's a challenge, though, right? With the largest area of service in the United States, and it is largely rural. It's largely frontier, actually, it's even one degree, more rural than rural.

Heather Simonsen: Yeah, and the things you're talking about with trust, it strikes me as they really don't want somebody who's just going to drive through Circle and leave, but take the time to understand the community and appreciate it and get to know the people, right?

Jakob Jensen: That's exactly right. There’s a legacy left behind in a lot of these communities, and I could tell dozens of stories about this, where they’re sort of failed efforts that were, I won’t say halfhearted, but they maybe didn't have the community's best interest in mind. In the late 1980s, a lot of Montana, Idaho, and Wyoming communities, for example, had telecommunication systems built into the community, so in Circle, they built this telecommunication hub in our shop building, this room that we always had shop classes in where they did the teaching part, they turned it into like a telecommunications hub.

There was a ton of excitement about this, all the things that would come from this, “Oh, we'll be able to do, you know, college classes through this, and we'll be able to do all this training, and we'll be able to do telemedicine through this.”

It really never bore fruit and it felt like there was a grant that built it, there was a few little pilot things they did for about a year to two years, and then it just faded away. Interestingly enough, we never really saw that, again, until COVID hit and then suddenly telemedicine was a necessity, and that's produced a much bigger impact in terms of tele infrastructure on rural communities than anything that came before. I don't know if rural communities have totally come to grasp with that, but it did. Of course, even when COVID hit and they said they were going to solve a lot of things with telemedicine and tele infrastructure, rural people were very skeptical. When you said telemedicine, or you said telecommunication, many of them thought “Oh, okay, we heard this song and dance before and I never did anything.”

That's the sort of baggage that is there, that we have to acknowledge and work around. What does it do? It produces fatalism and produces trust issues. That's why I'm very mindful to never describe fatalism or trust issues, as you know, “Oh, well, they think this incorrectly.” No, they think that because that's their lived experience. They think that because that's what survival is in a small town.

Skin cancer in rural America (25:17)

Heather Simonsen:

It makes so much sense. Your cancer journey with skin cancer. Skin cancer happens to be one of the most common cancers in rural America, and preventable.

Jakob Jensen: Yeah.

Heather Simonsen: So, this strikes me as truly lifesaving research that you're doing.

Jakob Jensen: Well, that’s kind of you to say. One thing I would stress, you noted that there's lots of things people can do from a prevention standpoint, one of the easiest things that you can do, and I would say the best thing you can do, is invest in good sun shirts. I strongly recommend rural populations. Think about sun shirts, what they have in that space, how they use them. I like sun shirts, in some ways better than sunscreen, if I'm totally honest, especially for individuals who are going to be working during peak hours.

They should be investing in real sun shirts, a long sleeve shirt is better than nothing, but I would recommend an actual breathable sun shirt. That's the kind of thing that I think adherence is much higher on. Its actual effectiveness is much better over the course of a day because even when we get people to put sunscreen on in the morning, reapplication remains a real issue. That's not to dismiss sunscreen, it's simply to say, I do think a good sun shirt, and a good sun hat, for example, has a lot of mileage for rural people and does a lot to prevent skin cancer. It's something that I would encourage rural communities to think about and invest in.

I know we're going to be investing in it from a Huntsman standpoint. That's one of our standard, sort of, giveaways at the moment, is sun shirts that are branded, then you could also be there in the community, they see you.

I mentioned that because as somebody who worked in agriculture, I grew up on a farm, t-shirts were very common from brandings, to seating to baling, to anything between. I wore a t-shirt all the time, maybe a baseball cap. That’s not the greatest move for someone who works in the in the heat of the sun. I also say that because sometimes our sun safe advice doesn't resonate with rural populations. And a good example of that is, the American Academy of Dermatology really endorses avoiding peak hours of sun as a way to prevent skin cancer.

Heather Simonsen: But you can't do that if you're working on a farm.

Jakob Jensen: It falls flat as advice, right? Agricultural communities go, “Well, do you know how agriculture works?” Peak hours are peak hours. That's when you're harvesting and that's when you're grinding away. That's problematic to me as a communication scholar because the moment that they unravel one piece of advice as falling flat, is far more likely they will just reject and insulate.

It feels like you're not speaking their language, you don't comprehend their situation. I never actually communicate that piece of advice to rural populations, right? Because I just know that they're going to say, “Well, okay, in theory I could just stay out of the sun, sure, but I can't so there it is.” I don't want to cultivate fatalism in them because there's a trigger for fatalism. The moment I got start down that slope, when I start down that road, the end of that road is fatalistic thinking. “Okay, I could do those things, well I can't do those things, so in practical terms, I can't do this. It's inevitable I will get skin cancer.”

Heather Simonsen: It’s almost like everything after you say that is kind of white noise.

Jakob Jensen: Yeah.

Heather Simonsen: It's not applicable to me.

Jakob Jensen: Right, and then they just say, “People get skin cancer in rural communities because we have to, that's just part of working outside.”

Heather Simonsen: Also, from what I understand there's still that myth that you get that first burn and then after that it's going to get tan. But the reality is, tans are sun damage. The tanner you get, the more damage you have.

Jakob Jensen: When I was a kid in the 80s, not a great time for skin cancer, by the way, the golden period of poor skin cancer prevention. I remember that people would tell me all the time in the beginning of the summer, burn till you peel and that will protect you the rest of the summer.