Cancer-Free Frontier: Episode 1, Part 2

Topics by Timestamp

• Welcome and introductions (00:51)
• Cancer research and creating a cancer-free frontier (01:35)
• Leadership, family history and health care disparities in the Mountain West (04:09)
• Cancer treatment challenges and community support (10:41)
• Cancer screening and early detection (16:49)
• Cancer research and access in rural and frontier communities (20:42)
• Cancer research and treatment in rural areas (26:46)

Welcome and introductions (00:51)

Heather Simonsen: Hello, and welcome to a Cancer-Free Frontier podcast, where we ask the question, how can we create a cancer-free frontier? I'm your host, Heather Simonsen.

Today on part two of our episode, we're talking about the challenges of creating a cancer-free frontier and what Huntsman Cancer Institute is doing to make that vision a reality. We're so honored to have Dr. Sachin Apte, chief clinical officer and physician-in-chief at Huntsman Cancer Institute and professor of obstetrics and gynecology at the University of Utah (the U), and Dr. Neli Ulrich, our chief scientific officer and executive director of the comprehensive cancer center and professor of population health sciences at the U. Sach and Neli, welcome!

Neli Ulrich: Good morning.

Sachin Apte: Good morning. Wonderful to be here, Heather.

Cancer research and creating a cancer-free frontier (01:35)

Heather Simonsen: It's such a joy to have you both here. You're two of the most brilliant people I know. And also, the kindest, and I'm excited for people to get to know you a little bit better. Sach, let's start with you. You were born in India? Can you tell us a little bit about your early years?

Sachin Apte: Sure, happy to. I was born in India but came to the U.S. at a very young age and grew up in northeastern Ohio. And I think some of my early experiences are similar to a lot of people who are growing up in an immigrant household. And I learned a lot of things, watched my parents work very hard. And coming here without a lot of resources, one of the first lessons I learned is the importance of community.

When you come here, and you don't have a lot of the resources of an extended family like you normally would, developing new friends, and the importance of how a community and the members of the community support each other was really important. Some of the other lessons I learned, I remember vividly going back as a child visiting. And of course, your initial reactions are to be grateful for what you have when you visit a country where they don't have as many resources. You also learn things like you don't always need a lot of things to be happy. You can be happy with fewer material possessions.

But as I came back to the U.S. from my first visit, and as a child, one thing that really stuck with me is the question, why do I have the opportunities that I have? And it dawned on me at an early age that I'm here, where I am, of course I work hard, my family works hard, but I stand here because of all the work of people that came before us. So, we all stand on the shoulders of other people in a certain way. Understanding that and making sure that it doesn't stop with me, so to speak, that I always want to make the world a better place than the way I received it. And I think fundamentally, that's one of the things that always drives me—is to make the world a better place.

Heather Simonsen: It's so beautiful and I love that. You mentioned standing on the shoulders of people who came before you, your father being one of them, right? A very hard worker who made sacrifices for you? Is that what you're talking about as well?

Leadership, family history and health care disparities in the Mountain West (04:09)

Sachin Apte: Absolutely. I mean, my parents certainly made sacrifices. My grandparents made sacrifices. And it's just amazing to see how those sacrifices ripple through time. And the importance of education, for example. Even though there weren't a lot of material possessions two generations ago, just the importance of emphasizing education and what those decisions can do, one, two, three generations in the future, it's really, truly extraordinary.

Heather Simonsen: Neli, you're from a beautiful city in southwest Germany. What was that like?

Neli Ulrich: It was definitely more densely populated than where we are here in Utah. So, if you think about Germany, it has more than 80 million inhabitants and it’s the size of Ohio. It was very organized and a lot of great transportation to get around, so that was important. But from a personal perspective, I grew up, I'm actually first-generation. So, nobody from my family had been to university before. And many of my family members also had been affected by World War II. For example, my dad grew up as a son of a single mom, in a very poor time. I always learned that and I think similar to what Sach said, you learn how things are possible with far less and how resourceful everybody can be, to make things happen.

My family is like a family of civil servants. I think early on, I learned the same things. How do you make the world a better place and whether that is related to social services, whether it was related to refugees, we had a lot of discussions about policy, and how do you help improve the world? I think I see myself very much as a servant leader. And when I noticed something is wrong, or I can help somebody then then I try to help and facilitate and support. And that's not that dissimilar from what my dad did.

Heather Simonsen: I love that so much, “servant leader.” I mean, isn't that the ideal what we'd all like to be? That's the way to be a successful leader in my book. Thank you for sharing that. And that must have been such a contrast coming from a densely populated country, and then the Mountain West, where we've got all these wide-open spaces. Was that quite an adjustment?

Neli Ulrich: Yes, I think, first of all, I loved nature. And so, I love the national parks and state parks and forests and all of that. But, you know, it's also sometimes scary, right? For me, and for my family, also, when they visit and drive through Utah, or the Mountain West, and you are driving and there's nothing. You're going through nothingness. It can be actually a little bit scary to some extent, because you wonder what happens if my car breaks down? What happens if there is a snowstorm?

I really had to learn to appreciate that. And I really love the freedom and the openness, but I also understand what it means to not have support in such a situation. And I also often think when I drive through, going to a national park or somewhere, about the opportunities my kids have. My kids are both growing up in a more urban area. So, for them, being able to have an internship, or take a class is so much easier than for kids who grew up in Price, Utah, or in Glasgow, Montana. And so that actually leads us to probably what Huntsman Cancer Institute is doing. We really try to reach out and try to provide opportunities for young people to learn about science and cancer, and do that despite being farther away and living in a less resourced environment.

Heather Simonsen: Right. And let's talk about health care disparities. You're talking about increasing access as one of our major goals and initiatives. And as the National Cancer Institute-designated Comprehensive Cancer Center for Utah, Montana, Wyoming, Nevada, I mean, we serve a vast area. What are the challenges in really trying to do the job we're tasked with this vast geographic area?

Neli Ulrich: There are many challenges. And it's five states, also including Idaho, and the way that we approach that first of all, we at Huntsman Cancer Institute have already had many relationships with those areas and domains. And we also have seen many patients come to us. They traveled sometimes 12 hours by car to come here because they know they can get the best possible care and cancer treatment. Actually, the best type of care you can get is through clinical trials. So, we have these connections, and we made a formal commitment just two years ago to say, these five states are the ones we want to serve: Montana, Idaho, Wyoming, Nevada, and Utah.

And what that means is we listen, first of all, we want to hear from members of the communities across the Mountain West, what their needs are. We have a community advisory board, which includes members from all these different states. We convened a Mountain West summit, where we brought together again, many leaders from those states, including many tribal leaders. And we learned and listened and what emerged as a central theme, whether it's the Nevada Cancer Coalition or the native tribes in Montana, is that distance can be a disparity. Distance as a disparity means access to cancer prevention, access to clinical care, access, also for young people to have maybe educational opportunities.

Cancer treatment challenges and community support (10:41)

Neli Ulrich: We jointly decided that we want to address that. Now, what does it actually mean, distance as a disparity? Let me give you one example. I was actually just up meeting with senators up on Capitol Hill, and one of the members of our group was a caregiver for a patient in Montana. And she just explained that her husband who had AML was not allowed to get on an airplane. They had to do a 12-hour drive to come to Huntsman Cancer Institute for treatment. And at some times of the year, the roads were simply closed. That's what happens, right? We have big snowfall in Wyoming, you can't get through it. She just explained how difficult that was to plan around and how grateful she was for the support that we gave with respect to helping work out transportation and housing. And making her and her husband come in for one-stop shopping, meaning one-stop care, as much as possible. So, this is one example of the challenges and I'm sure Sach has many more examples. And I'm happy to talk more about what we're doing on the research side to overcome that.

Heather Simonsen: Yeah, well, thank you for sharing that. I mean, let's talk about the patients. Sach, what are you seeing in your, your clinics, as far as, I mean, traveling long distance for care, we know that has an impact. But can it even be quantified? In the healing process, how important it is to be surrounded by a community, to be in a restful space where you feel comfortable? Can you talk a little bit about that?

Sachin Apte: Yeah, it's such an important topic. You know, first stepping back a little bit. You know, cancer treatment in general is very unique compared to a lot of other diseases and situations that patients find themselves in. Treating cancer is, first of all, it's scary. There's a lot of intensive treatment, whether it's surgery, chemotherapy, radiation, or combinations of those. And it can be very stressful on a patient psychologically, physically. And then on top of that, if you have to add distance, it can be very terrifying.

You know, Neli mentioned the remoteness and traveling long distances. Imagine if you are far from an urban area and you're sick. Let's say you just had chemotherapy or surgery and you have a fever, and you're not feeling well. Getting to care can be really difficult. And so yes, in general, cancer treatment is unique and it often requires a lot of resources. It's not so easy to have a major cancer center in every state, close by to everybody, simply because of the resources it takes to treat cancer. So, in this part of the country, distance is a reality that we have to confront head on and see how we can solve it.

You mentioned community and I reflect on the recent experience all of us have lived through with the COVID pandemic. We all inherently know the value and importance of community and family members, but the COVID experience was so striking to me when all of our listeners will remember times when family members were not allowed in hospitals, where cancer patients had to enter hospital by themselves, go through major treatment, and be alone in a room. And to hear the stories, to talk to family members, caregivers, supporters, who just couldn't do something so simple as just be in the same room and be by their bedside, you know, hold their hand talk to them, things we take for granted. When we couldn't do that. It was heartbreaking. It was really challenging and I can't imagine what our patients went through. So, that just was a kind of a stark reminder of what community means.

At Huntsman Cancer Institute, our goal is not just to serve the Mountain West, all the states you mentioned, but we put a high price on treating patients and whenever feasible, keeping them in their communities.

Neli mentioned, the relationships we've already had. So, for example, we have a wonderful network of affiliates, in all these states, where we have partners, both on the clinical side, as well as the research side. Neli mentioned clinical trials, where we partner with local communities to take care of the patients jointly. We're here to help them whenever they need. And I have to tell you, these communities do a phenomenal job, often times with less resources than what we have. But it's amazing to see how dedicated these providers and clinical teams are within their local communities to their patients.

And we take it as a huge responsibility and something we put a lot of effort into to make sure that when feasible, we would like to keep patients in their communities, with their family members, their church groups, their school groups, their work groups, whatever community that is important to them. And certainly, when a patient needs to come here, 100% we're here for them. We're here to take care of them at Huntsman Cancer Institute. But when they're ready to go back, that's what we want to do, because we think patients are best served locally.

Cancer screening and early detection (16:49)

Heather Simonsen: I love how you pointed out that sense of community and keeping patients in their hometowns whenever possible. And yet there are so many hurdles like licensing across state lines and treatment. Neli, can you talk about that challenge?

Neli Ulrich: Yes I'm happy to talk about that.

Every state has specific ways of licensing physicians, and we see patients from all across the U.S. and especially those five states, and it can be quite disruptive and problematic for patients and their caregivers, when then a barrier comes in between, and does not allow a physician to continuously care for a patient who has just returned to their different home state.

And another example is we have a wonderful bus. It's called a mammography screening bus. Inside it looks like a hospital and has just the same wonderful staff and that bus has been going to a lot of locations across Utah that serve populations that have received less care. And it's been very important, many of the women who have been using that bus have never had a mammogram before, and we found more cancers than we would in another population.

Heather Simonsen: That makes so much sense. And I'm so glad you brought up the screening bus. It is beautiful, and it's as gorgeous as Huntsman Cancer Institute, but in a mobile form. And most importantly, does those lifesaving screenings.

Sach, let's talk about that a little bit. You've mentioned to me before that there are possibilities of you know, doing other tests in those mobile screening buses. What does the future look like?

Sachin Apte: I would say screening bus 1.0 is focused on things like mammography, which are very important to be able to take screening to patients directly that have a hard time getting here. But we are extremely fortunate at Huntsman Cancer Institute. We have already ordered a second screening bus. But we are in the early stages of developing what does that look like beyond mammography? So, for example, colorectal cancer screening so with collecting samples, stool samples, for example.

We would like to be able to do things like blood tests so prostate cancer screenings for specific patients. We would like to do even things like genetic counseling.

Huntsman Cancer Institute has a very long history in genetics. Many of the well-known cancer genes have been discovered at Huntsman Cancer Institute. And we think there's a way to provide telegenetics, telecounseling, and then be able to collect with it saliva samples or blood samples. There's so much more we can do with our second screening bus. And we are working to design it that way so that we can look at all things even, let's say oral cavity cancers. There are even some unique ways that are coming on to screen for, let's say cervical cancer. So, I think that this next screening bus can build on the past success and make it even more robust.

Heather Simonsen: When we catch cancers early, that's when they're most treatable. There is so much people can do. Often we hear people feeling powerless about cancer, and that it's inevitable, and there's nothing I can do. But there's so much you can do with lifestyle, and also getting those those screenings. I think the future looks so bright and I'm so excited about that. What else still needs to be done?

Cancer research and access in rural and frontier communities (20:42)

Neli Ulrich: Huntsman Cancer Institute is a major research powerhouse. And so, what we are doing is actually a lot of research, to overcome distance as a disparity, and that has been so much fun like our researchers are engaging with the cancer coalitions, with the departments of health. We have just built a collaboration with Montana State University and received a very prestigious grant together in partnership to address persistent poverty in the Mountain West. So, this includes both urban and rural populations, and many of our native tribes and nations. And we can't wait to see the impact of such an important partnership. We also do a lot of research into new treatment modalities.

So, whether it's digital health or telemedicine, all the things that we learned through COVID actually can be refined. We can use artificial intelligence to help take care of patients in ways that are more efficient and faster and help us to overcome distance as a disparity. We have a model called Huntsman at Home, which is another major research project where we try to overcome the gap that happens often when patients are leaving the hospital and help to continue care in their home.

And most exciting perhaps, is that we just are in the process of completing a survey. And it's the first survey of addressing the needs of populations, people who live in frontier communities. Now, frontier means fewer than seven people per square mile. And they have been typically left out of the national surveys. And so, nobody has really understood the needs and what's going on. We received money from the National Cancer Institute to conduct such a survey, and we just have the very first results and can talk more about them in the future, when we have more time, about what would help in terms of access and visiting specialists.

What makes sense in terms of clinical trials is like, first educating what that means because more than two-thirds have never really thought about that term. So, these are things that we're actively doing to try to learn and do research. And last but not least, I think a key effort is underway jointly with the National Cancer Institute, to make sure we can make trials easier for people if they live further away. It's the concept of using different centers or using tests that can be done locally, and just working together so people do not have to travel back and forth as much.

One of our landmark trials that was led out here out of Utah was to look at can we do less radiation treatment less frequently for women who have breast cancer? Many times, the women who live further away have to decide whether to have a mastectomy to have the breasts removed, or to undergo radiation treatment. And if radiation treatment means traveling back and forth multiple times per week for many weeks, many opted out of that and had instead a mastectomy and had the breast removed. And so now we have these trials that test, “Hey, what happens if we give a higher dose of radiation treatment but less frequent, do we have the same effects?” And so, we're trying to be really creative as researchers to help understand what we can do to overcome distance as a disparity and help out in the Mountain West.

Heather Simonsen: It's really bringing that world class care and research and science and that cutting-edge science where patients can come and possibly be enrolled in those clinical trials and really receive the best treatment that science has to offer. What can people in the community do to help?

Sachin Apte: You know, one other thing I want to mention in terms of what we're doing it Huntsman Cancer Institute, in addition to what communities can do to help this access, and so it's extraordinary how Huntsman Cancer Institute has grown since it was initiated and started more than two decades ago, still a very young cancer center. But we focus a lot on access, meaning we can have the greatest research, we can have the greatest care, but if we can't get patients here, we're not succeeding. We do spend a lot of time, first of all, on recruitment, as large of a center as we are, we need more people. We need even more talent because of our growth. And so, we work on that every day.

We also have a grant with the partnership with the American Cancer Society on navigation. So again, it comes back to access. I'm sure anyone who has dealt with the U.S. health system understands how incredibly complicated it is. It’s really hard to navigate. Now on top of that, let's say you live far away in a frontier situation that Neli described. And you're stressed and scared because you just got a cancer diagnosis. And so, we do have a grant and we have a study looking at navigation for rural communities. I think that ties in a bit to your comment about what can communities do?

Cancer research and treatment in rural areas (26:46)

Sachin Apte: I think one thing, we look forward to partnering with them to find out, what can we do to make things easier?

For example, this survey that Neli mentioned, when we want to partner with communities to find how we can help them there are many times we can make assumptions, we don’t want to do that, about what we can do to lower those barriers to make things easier. Another example is housing. We know when patients come from far away and a patient has to stay here for a long period of time, that's really a drain financially, as well as just being away for that long. So, we put a lot of work on improving patient and family housing. I think when we reach out to communities, we want to empower them to be vocal, to let us know what we can do to help sometimes. For example, there are insurance barriers. If there are barriers like that, just using that as an example, as the cancer center, not just for the state of Utah, but in this vast area, we would like to partner with local communities to see what are those barriers? And how can we, together team up to bring those down, simply to make sure that patients can get here.

Heather Simonsen: Finally, I'd like to ask each of you, what does it mean to you to deliver a cancer-free frontier? That's a big question.

Neli Ulrich: When we coined that term, initially, I was actually a little bit struggling with the fact that, you know, coming from German background, I take every word very literally. And it was like, what does it mean? How can you deliver a frontier, and it has become clear to me a lot more by working with my colleagues how this vision is so powerful and so meaningful, because the word deliver means we have to do it, we really actually want to deliver. This is not just a goal. And the cancer-free frontier can be many fold, right?

First of all, when we visualize the frontier here, it resonates right away with, what do we try to do for our rural and frontier communities? But the frontier is also in a scientific sense. What are we doing that is innovative and new and will impact the entire world. And I could talk forever about the great progress that we have in immune therapy, or in how we translate findings from our benches, our lab benches directly into the clinic, or how we use artificial intelligence to help people have mammography. So, these are all frontiers that our scientists try to break on a daily basis. But I think what's really important is the word deliver. Because no matter what we do in research, we want to make sure that it's relevant and matters to the clinic and the patients or the population.

Heather Simonsen: Well said. What about you, Sach?

Sachin Apte: I love how Neli phrased all that. Even though it's a few words, it means so much to us at Huntsman Cancer Institute, and it's our North Star so to speak. So, delivering a cancer-free frontier is, if you really think about it, it's really an audacious goal and an audacious destination. And it's something we think about every day, whenever we make a decision, or we're trying to figure out how to prioritize, we use that. And to me, it's on many levels, essentially, eradicating cancer in the Mountain West. And if you think about all the things that have to go right to make that happen, from understanding the basic science, to developing new treatments, to screening, effective screening, access, getting patients here or treating them.

And then also, a part that doesn't often get a lot of attention as a survivorship aspect is we have patients that we have cured, but now they're dealing with the consequences of their treatments, which sometimes can be life-altering. And so, that's what it means to me. It's a very large concept. But at the end of the day, in a very holistic manner, we want to eradicate cancer in the Mountain West.

Heather Simonsen: Well, what a treat it has been having both of you with us today. I admire you both so much, and you’re two forces for good. And we're so lucky to have you as leaders at Huntsman Cancer Institute. So, thank you so much for being here today.

Neli Ulrich: I really enjoyed it.

Heather Simonsen: We extend our sincere gratitude to Dr. Sachin Apte and Neli Ulrich for sharing their expertise and experiences with us today. As they said, it's really possible to reach people who need our help in screening and treatment in greater access in these rural and frontier counties. But there is still much that needs to be done.

To our dedicated listeners, we appreciate your support. For additional resources, be sure to check out the show notes. And if you want to stay connected with us and be the first to know about upcoming episodes. Don't forget to hit that subscribe button on your favorite podcast platform. We truly appreciate it if you could take a moment and leave us a rating or review. Your feedback is incredibly meaningful. And please tell your friends and family about our podcast and share episodes on social media. I'm your host and executive producer of a Cancer-Free Frontier. Heather Simonsen Avery Schrader is our producer with help from Carly Lehauli and Jill Woods. A special thanks to The Pod Mill and Mix At Six studios for their help with this episode.