Host
Heather Simonsen, MA
Public Affairs Senior Manager
Huntsman Cancer Institute
Guest
Phyllis Nassi, MSW
Associate director of Community Outreach and Engagement at Huntsman Cancer Institute
Guest
Nathan Begaye
Administrative program coordinator of the American Indian Program at Huntsman Cancer Institute
Episode Transcript
Topics by Timestamp
- Welcome and Introductions (00:51)
- How first-hand experiences began careers of caring (01:57)
- Understanding cultural norms and how they impact cancer screening (04:42)
- Understanding tension by looking with a historical lens (10:31)
- Fostering trust through partnerships (14:57)
- Blending science and culture (17:15)
- Mending the care gap with the stories that have been forgotten (23:40)
- The importance of closing the tech gap (30:03)
- Using ‘in-reach’ instead of outreach to identify what’s missing (32:01)
- A cancer-free frontier through consistency, showing up, and being a good relative (34:45)
- Thank you (37:13)
Welcome and Introduction (00:51)
Heather Simonsen: Hello and welcome to Cancer-Free Frontier podcast where we ask the question, how can we deliver a cancer-free frontier? I'm Heather Simonson and I'm so glad you're here with us today. Our guests today are Huntsman Cancer Institute's boots on the ground in the American Indian and Alaska Native communities in the Mountain West. They’ve built a reputation of trust with tribal leaders, and more importantly tribal members on the reservation, but it's taken decades. Phyllis Nassi, MSW, is an associate director of Research and Science with Community Outreach and Engagement at Huntsman Cancer Institute at the University of Utah (the U). She also directs the American Indian program. She's an enrolled member of the Otoe Missouri tribe and a member of the Cherokee Nation. Nathan Begaye is the administrative program coordinator and an enrolled member of the Navajo tribe. Well, welcome Phyllis and Nathan! Thanks so much for joining us today.
Nathan Begaye: Thanks for having us.
Phyllis Nassi: Yes, thank you for having us.
How first-hand experiences began careers of caring (01:57)
Heather Simonsen: Well, it's such a pleasure. Phyllis, you grew up on a reservation in Arizona. How did that impact your career path?
Phyllis Nassi: It's probably the most important factor of my career path, because I was introduced to traditional Indian medicine as well as the Indian Health Service (IHS). And so, I was there from the time I was four years old and then I left when I was 15, but I continued being part of the Indian Health Service system through college and graduate school.
Heather Simonsen: So really some experience that shaped you, because in your work now, educating tribal members about cancer, you've been there, right?
Phyllis Nassi: Yes.
Heather Simonsen: And Nathan, how did your upbringing in Blanding and your mother and grandmother's advocacy work influence your career?
Nathan Begaye: Yeah. So, if anyone's familiar with the Four Corners area, specifically San Juan County, Utah, you know it's very rural, a frontier. There are aspects of it that are very, very rural and frontier and there's a culture around that. We had to drive an hour and a half to Cortez to get to Walmart, big box stores were not near. When I was growing up in the 90s, access to health care was the local IHS office in Montezuma Creek and so we'd have to drive 40 minutes onto the reservation to get care. Blanding is a border town that’s situated just about 30-40 minutes north of the Navajo reservation and about 15 minutes north of the Ute Mountain Ute White Mesa Community. So, yeah, it did shape the way I approached the work that I do; and seeing my grandmother, Donna Singer and my mom Gloria Begaye, really push for equitable access to health care. IHS, what I mentioned was the primary care service that we received up until the early 2000s, when they initiated, really my grandmother, Donna Singer, she pushed for tribal 638, legislation that gave American Indian tribes the authority to contract with the Federal government, in our communities in San Juan County. And that was the Utah Navajo Health System. My mom joined as a founding board member and she's still a board member to this day, but seeing them advocate for more specialty care, more equitable access to health care, prescriptions, providers. It was amazing.
Heather Simonsen: So you could really see the difference that they made, and it sounds like it inspired you. Wonderful.
Nathan Begaye: Yeah.
Understanding cultural norms and how they impact cancer screening (04:42)
Heather Simonsen: Phyllis, what is the historic care gap for American Indians, especially in regards to cancer treatments?
Phyllis Nassi: I would say that it's, from my experience and seeing this as a child, hospital care, parenting clinics, and having to travel so far. The people that, my brothers and sisters, that needed health care avoided going. Because at that time, traditional Indian medicine was probably the health care provider that was most trusted. As a culture, we tend not to talk about our illnesses, and we tend to make sure that we don't speak about them around other people, because there is even still today a belief that if you say it, it will come to you. Or if you hear about it, it will come to you, and you will get sick. So, they avoided the clinics until they were so very, very sick that relatives were able to convince them to go to the hospitals. And they often died because they didn't get the health care until cancers were stage four, or until they had pneumonia, or the tuberculosis was so advanced that there was nothing that could be done. And that was the way it was, that was normal, from my experience. It's not as normal, but it still exists today.
Heather Simonsen: Well, I can't imagine. Especially, you know, we know with the way cancer works, it's so devastating. The later that you're diagnosed, if you're not getting those screenings. So that presents a really unique challenge. Nathan, what other challenges do you see for the American Indian and Native Alaskan communities?
Nathan Begaye: Due to my position here at the American Indian program at Huntsman I've had the opportunity to work with rural or frontier communities, that's where our program predominantly focuses on. We know that the majority of American and Alaskan natives in the United States live off reservation. That can be border towns, suburbs, metropolitan areas like Salt Lake. What I noticed is American Indian and Alaskan natives, and it's in the data as well, we are not a monolith. The cancers that present across the United States are going to change region to region. Recognizing that tribes in the plains are going to present with more respiratory issues, more lung cancer. Alaska Native communities are going to present with more CRC, more colorectal cancer, and tribes in the southwest are going to have gallbladder, pancreas, more GI types of cancers. This really affects the way that cancer is approached, education is approached, providers should know more about, but also that American Alaska Natives, as Phyllis was mentioning, will present with comorbidities. So, the risk factors that put a lot of people at risk for cancer also puts them at risk for things like obesity, diabetes, hypertension, anxiety and stress, depression. This affects the way that we treat American and Alaskan Native cancer patients, knowing that they're going to come with comorbidities. There's this thought I've had recently of like American Indian and Alaskan Native patients, when they get diagnosed late stage, and some of them don't get diagnosed at all, that reality of dying with cancer or dying of cancer. And I think that's something that presents in American Alaskan Native communities, and something that should be more thought of is just that we're not a monolith. The disparities vary from region to region, and that affects our health disparity outcomes.
Heather Simonsen: Well, you mentioned dying with cancer versus dying of cancer. Can you explain what you mean by that a little more?
Nathan Begaye: When I think about what I hear a lot in the communities it’s that cancer is foreign, or it's a new thing. And I think to myself, like, biologically, cellularly, it's a naturally occurring thing. It happens as we get older, and there are external factors and inherited factors that contribute to someone developing cancer. So, the reality of it being foreign seems to me an interesting approach, understanding that a lot of the comments are coming from people who utilize traditional Indian medicine. So, there is a bridging of that gap, but it's something I think about when I talk to community members or people in my family and they talk about grandma passing away of like a car accident, or uncle passing away of cirrhosis, or someone passing away of another disease or condition and realizing they probably had cancer and did not know. Because, as Phyllis mentioned, we don't get diagnosed until late stage. So that reality of dying with cancer versus dying of cancer.
Heather Simonsen: And also, knowing that many cancers now are survivable and treatable, right? And that the opposite is actually true. Like, if you're getting your screenings and you're seeing your physician, its actually life-saving in many cases.
Nathan Begaye: Right.
Understanding tension by looking with a historical lens (10:31)
Heather Simonsen: I think that's so fascinating. And, Phyllis, you've talked a lot about this issue in the past and trust being a big problem between members of these communities and healthcare professionals. Why does that tension exist?
Phyllis Nassi: It's a historical issue, and it really comes from the interaction between the federal government and the tribes. The establishment of reservations and actually having no health care available to them, and being a federal program, reservations required that tribes, for the most part, be moved from their ancestral lands. And so they didn't know how to farm, they didn't know what it really meant to be fisherman who got moved inland. So the first program they had access to, in a way they had access, because as Nathan was saying, it is probably one of the greatest diversity issues that we have with the tribes we work with, but once they got to the reservation, got to the clinic, when they went and they found out that it was a federal program, they shied away from it.
And many times, the people who came to run these clinics, and most often, even today, they were only there for a couple of years, so they never really become part of a community as tribes know them. The trading post owners, you know, they lived on the reservations. And the tribal community members saw the same person for generations, and their families. That relationship was built because of the type of system for the trading posts to have, and be, and stay, and remain, even to this day, on the reservation. And also, today it even exists, Nathan was talking about all the comorbidities. The doctors in the clinics often have a very narrow vision of the illnesses that Native Americans have. I have been told that, I don't see a cancer patient coming back from Huntsman because you take care of them, you are the ones that take care of them. What I see when I see a Native, I see diabetes. This was when we were working with a gynecological grant. He said, you have made me understand that I need to see this woman. And I should think, has she had her breast cancer screening, has she had her gynecological screenings? Back in the time when I was growing up, mammography didn't even really exist. And even today, it's a challenge to have the equipment for screenings at the clinics on the reservation. So that becomes a real issue when you're trying to make sure that we are moving forward and closing the gap for American Indians because many of the same things still exist.
Fostering trust through partnerships (14:57)
Heather Simonsen: Well, and Nathan, how do we bridge that gap? I mean, what's working?
Nathan Begaye: Right. When I worked with the American and the Alaska Native communities, specifically tribal health systems, the 638, it's knowing that the University is partnering with them, right? So, the University of Utah has an affiliate network and Utah Navajo System is one of those affiliates, and they take cardio teams down and they service Native patients or the patients utilizing UNS’s services. I think they also do Dermatology down there, I think they also do mental health services. So, it's working to a degree, but that's just with one tribal 638. There are over 568 federally recognized tribes in the United States. In Utah alone, there are eight tribes, and then half of them have their own tribal 638s. In the area that we serve, there's close to 42-43 federally recognized tribes.
Heather Simonsen: 638, what do you mean?
Nathan Begaye: If Phyllis wants to share also, Public Law 638 is the Patient Self-Determination Act (PSDA) passed by Congress that allowed American Indian and Alaskan Natives to self-determine things in their communities surrounding education, health care, wellness, economics. So, a lot of tribes didn't take advantage of it fully until recent decades. Health care is one of those options where the funding for health care funneled through IHS, got to tribes. Phyllis, was it a couple cents to the dollar?
Phyllis Nassi: Yeah, it was 10 cents.
Nathan Begaye: Yeah. And so, with this self-determination act, the tribes are able to receive most of that funding directly to them. They're able to structure their own health care services through a tribal 638. And what I see working is that partnership, what I would like to see more of is health care institutes, like Huntsman, like the university, engaging with these tribal securities and IHS facilities as partners.
Heather Simonsen: Right, and it kind of goes back to what you were saying before. If it's in those tribal leader’s hands, it seems to me that that's going to increase the success and build that trust.
Nathan Begaye: Right.
Blending science and culture (17:15)
Heather Simonsen: That’s wonderful. Phyllis, in efforts to bridge that gap, how can we align American Indian, Native Alaskan belief systems and science?
Phyllis Nassi: That's going to take effort, because there is a lot of science in the belief systems of the American Indian and Alaskan Natives. When they talked about everything living, they were talking about a level of quantum physics. Where they're down at the molecular system, and so nothing is really solid, and everything is moving. They have an understanding of that, and they've had understandings of many of the ways that science interacts with us. Astronomy, they knew the placements of the stars, and the sun, and the moon, and when the solstice was. They have today, even still, our medicine people have a way of working with the plants and knowing what is available to him that can help heal certain things. Corn and penicillin were really discovered by American Indians because of mold that would form on the corn, and they would use that and it was an antibiotic.
We have such a long history of things that work, but if we don't get the opportunity, and by we I'm talking about the enterprise, and the staff, and physicians, and professors who work at Huntsman Cancer Institute, to take the opportunity to learn about different cultures, have an understanding, and interaction, getting out of their silos and coming with us to the reservations, because I make every effort to fly doctors to clinics. Just because they have a different vision than I do, they see the possibilities in a way that I cannot see them. It takes effort on our part, again, the enterprise, to make the effort to know, and have the chance to study, or be told, or hear about the way American Indians and Alaska Natives live. What does culture mean to them? Do you even know what culture really is? It's the way we raise our children, it's how we interact with nature, it's how we interact with each other, it's a way of speaking. Because you can have different ways of speaking in a tribe, for example. There's a way children speak, there's a way I would speak to someone that I do not know, there's a way to speak to my elders, there’s a way to speak to my family. That kind of understanding also, although it's not a basic science, it's not science in the way that we would think of it, it is it is a familial relationship. And it is a society, it's a social way of being.
Heather Simonsen: I love that so much. What you're saying is so amazing and I think a lot of people may not realize the close connection there, but it makes so much sense.
Phyllis Nassi: One of the things that the program has been able to do is we were invited, the American Indian program, was invited to speak at the School of Medicine. We were doing it for 10 years, and we’d talk about cancer in Indian country to the year ones and year twos (students), and in the beginning, we also did year three. So, if we start with their medical students, and introduce them to the area we serve, they're going to become physicians with a different way of being.
Heather Simonsen: So, starting from the beginning. I think that, that's so inspired. And Nathan, how does an embrace of those beliefs assist cancer education in these communities?
Nathan Begaye: I think we're starting to move away from a dichotomy, looking at it as a dichotomy, and looking at it as the same thing. Traditional Indian medicine is science. There are aspects that are similar and different, but removing this dichotomy of like, versus, is one way to approach it. Like Phyllis was mentioning, training the next generation of providers to be trauma informed, to be culturally informed, is one of the best things we can do because there aren't enough American Indian oncologists, radiologists, pharmacists, there just aren't enough of us. Non-Native providers having that training, like Phyllis was mentioning, is so impactful. Understanding that when the patient is coming in who is culturally centered, and believes in their culture, and their traditions spiritually, that that is important, and that we care for them in a way that aligns with how they want to be treated. In terms of education in the community, it's felt. When I'm talking to community members in a manner in which is appropriate to them, they hear what I'm saying. And to be very honest, that you appreciate it coming from a Native face.
Mending the care gap with the stories that have been forgotten (23:40)
Heather Simonsen: Absolutely, and you're able to connect on a different level, a deeper level. Thank you for that. Phyllis, what role does patient advocacy play in rebuilding that trust or even closing that care gap?
Phyllis Nassi: First, in rebuilding the trust, as Nathan was saying, it's about seeing a Native brother or sister in the hospital when you get there and knowing that there is someone who is like you, who understands when they're talking about wanting to go to a medicine man and go through ceremony before they start cancer treatment or go into a sweat lodge. Someone like Nathan and I, because we do see patients from time to time in the hospital, communicate that to the physician. So now it has become something that is at least discussed within the, I want to say grand rounds but it's not grand rounds, when they have the discussions about their patients and what they're doing.
Also, when it comes to closing the care gap, I think that will only come with time and money. Being a patient advocate and sitting on the different national boards, and writing papers with the Academy of Sciences, and being focused on having the experience of boots on the ground, and knowing what the experience is for the patient, and talking about that at levels beyond our doctors and the cancer center directors, but on a federal, national level. And bringing back the stories that have been forgotten and not talked about for a very long time and introducing what health care is and the challenges. And having it come from a Native woman who has experienced this is changing the way health care is looked at, for example, in Washington, DC.
Heather Simonsen: Well, and I love how you mentioned bringing back the stories that have been forgotten. Can you tell us a little bit more about what you mean by that, Phyllis?
Phyllis Nassi: The stories that have been forgotten, really, come from our elders. They center around family and they center around spirit. Those stories that, for example, that even Nathan and I have, in the 20 years that the program has been a part of Huntsman, I started out, talking about stories, and going to meetings with the physicians, and talking about the experiences, and the past, and boarding schools, and the intergenerational trauma, and having the opportunity to talk about what it really meant to have your children taken away and put into boarding schools and how that affects a child who really has no relationship, or has experience on what it means to be a parent. So, coming back and having children and not knowing how to parent, and the drug problems, and all these things that we've talked about.
And we just keep moving forward. And we move forward at such a fast pace, that we forget that that person in front of us, that Phyllis and Nathan, are the product of intergenerational trauma. That we have those experiences within us, we know them. We happen to have had the opportunity to, and sometimes it's an opportunity when I say that, we don't know what it means to be Cherokee, I know what it means to be Navajo and Hopi. And I don't know what it means to be Otoe as much as I do being Navajo and Hopi. And those stories, there was a time when they were coming to the hospital and to the clinic in the city in wagons. And this is part of my life and my experience. In telling the story that my mother was not born a citizen of this country, my father was not a citizen of this country. And people don't know those stories and they don't think about those stories and they sometimes, you know, just knowing the history that we know and its recent history, it's my mother, can make a difference in how you interact not just with Native people, but with someone who's just, and you know when you walk through that door, different from the way you have been brought up and your experience.
The importance of closing the tech gap (30:03)
Heather Simonsen: That strikes me as so profound, what you're saying, Phyllis. And Nathan, if you could add to that, what have you heard from these communities? What do they need from health care professionals?
Nathan Begaye: When speaking with community members or health department directors, there is an understanding that they sometimes feel left behind. So, science is moving at a fast pace, cancer research is moving at a fast pace, and a lot of the rural and frontier American Indian and Alaska Native communities are still operating generations behind them. So there needs to be a closing of the tech gap, too. Internet, broadband internet in rural frontier communities needs to be a priority, right? With distance as the disparity in the area we serve, logistics need to be taken and considered. Gas money, vehicle maintenance, elder care, child care, all of these things need to be taking consideration when we're asking patients to come to Huntsman to receive care, to participate in a clinical trial. A lot of these things, often we don't think about working with patients from the Wasatch Front, who can take half a day off, go to their appointment, or whatever.
But for a lot of Alaskan Native, American Indian community members in the area we serve who work 9 am to 5 pm jobs they’re hourly paid. Taking off 2-3 days is like cutting into their wages, right? So, understanding a lot of the realities of logistics and life for American Indians or rural, frontier communities is so important for health care professionals to understand, to be informed of that. For us as an institute to try to close that tech gap with these communities as well. Advocating for ways to bring tele oncology to these tribal 638s, helping them find that infrastructure that they need to support that.
Using ‘in-reach’ instead of outreach to identify what’s missing (32:01)
Heather Simonsen: Those are such wonderful ideas and so necessary. I mean, it just sounds like those things have to happen, that infrastructure has to happen, in order to close these gaps. Finally, Phyllis, can you tell us what does it mean to you to deliver a cancer free frontier?
Phyllis Nassi: When I think about that, and when we've gone to hear Neli and Mary speak about this. I've been here for 22 years, and we have, and again, when I say we I'm talking about the enterprise, because when I go out, when I go anywhere, and I'm talking about the American Indian, or with the American Indian, or even sometimes the ranchers are there, and the farmers are there and rural communities there, we here, don't know that. And so, to deliver a cancer free frontier, I think it's time that the outreach turns into in-reach. And we make the opportunity for our PIs, for our doctors who don't know rural and frontier areas, for our staff to go out to see. Because a change is not going to happen unless the visionaries are able to provide the opportunity for that individual to leave his silo, or her silo, her lab, take a day off from his clinic, and go. Because if they don't see what is missing, they won't know how to express what is needed to really make that cancer frontier, free of cancer, a reality. And so, I think it's moving and including in-reach now. We continue with the outreach, because cancer is constantly changing, but we also need to focus on in-reach.
A cancer-free frontier through consistency, showing up, and being a good relative (34:45)
Heather Simonsen: I love that so much, from outreach to in-reach. I find that so meaningful. Thank you, Phyllis. Nathan, what does it mean to you to deliver a cancer free frontier?
Nathan Begaye: When I think about this question, I think about it in terms of equity and justice. So when you're working with underserved populations, no matter their racial, ethnic minority or their socioeconomic status, their, whatever background they have, but in this context rural and frontier American Indian and Alaskan Native communities, to deliver a cancer-free frontier needs to be seen through an intersectional lens. We need to understand this as a question of equity and justice, right? We need to make sure that we are mending a lot of that mistrust the communities feel. We need to make sure we're showing up consistently. When you think about a friend, or a good friend, or sibling, your sister, your brother, right? How do you want them to show up for you? How do you want to show up for them? These things are so central to American Indian, Alaskan Native communities. Because as much as we live in a Western world, in a western context, in a Western culture, country, a lot of us indigenously still operate relationally. It's how are you showing up for community? It's how are you showing up for your friends, your siblings, your parents? You know, are you a good relative? So delivering a cancer-free frontier means Huntsman has to be a good relative in all aspects.
Heather Simonsen: Wow. I mean, being a good relative, too, is understanding where that person is coming from, right. And it strikes me that that's also when the best medicine happens. When it's not just a name on a chart and medical background, but it's knowing the person and where they're coming from and what it took for them to walk through that door to come to your clinic, right? Thank you so very much, Nathan and Phyllis. Thank you as well. It has just been truly, truly such an honor talking to both of you today.
Nathan Begaye: Thanks for having us.
Phyllis Nassi: Thank you.
Thank you (37:13)
Heather Simonsen: Science and American Indian beliefs have more in common than you might realize. Both are rooted in essential truths about the natural world. Fear, mistrust, and a lack of understanding about cultural norms create barriers to cancer prevention, screening and treatment. But we can rebuild trust by understanding what it takes for a member of the American Indian community to walk through that clinic door to receive care.
We extend our sincerest gratitude to Phyllis Nassi and Nathan Begaye for being here with us today and sharing their incredible experiences. To our dedicated listeners, we appreciate your support. For additional resources, check out our show notes. And if you want to stay connected with us and be the first to know about upcoming episodes, subscribe on your favorite podcast platform. Please log on to Apple podcasts and leave us a five-star review. It helps listeners like you find us. We're always eager to hear from you. Whether you have questions, comments, suggestions for future topics, or a personal story you'd like to share, please visit our website huntsmancancer.org. We are thankful to the Communications and Public Affairs team at Huntsman Cancer Institute and The Pod Mill for help with this episode.