12 – Improving Cancer Screening and Care in Native American Communities
September 18, 2023

The American Indian Cancer Foundation is on a mission to eliminate the cancer burdens of Indigenous people through improved access to prevention, early detection, treatment and survivor support. Melissa Buffalo, CEO of the Foundation, discusses the cancer burden faced by Native Americans and what her Foundation is doing to reduce disparities in care.

Transcription

Kim
Today marks an exciting moment for The Cancer SIGNAL, as this is our 12th episode and this month marks one year of this podcast being out in the world. So I just wanted to extend a quick thank you to all of our guests who have joined us over the past year, as well as our listeners and subscribers. You can help us reach more people by giving The Cancer SIGNAL a five star review where you listen to podcasts.

Kim
Welcome to The Cancer SIGNAL, a podcast presented by GRAIL, where we discuss the impact of early cancer detection, the science behind multi-cancer early detection and insight into how this approach has the potential to shift the cancer paradigm. I’m your host Kim Thiboldeaux. We’ve talked on this podcast about cancer disparities and the need to bring better screening, treatments and care to people of color. Today we’re pleased to welcome to the show Melissa Buffalo, CEO of the American Indian Cancer Foundation. The mission of the American Indian Cancer Foundation is to eliminate the cancer burdens of indigenous people through improved access to prevention, early detection, treatment and survivor support. Melissa will help us understand the cancer burden faced by Native Americans and what her Foundation is doing to close the gap in care. Welcome to the show, Melissa.

Melissa
Thank you. I’m honored to be here today.

Kim
So Melissa, would love our listeners to learn more about you, so let’s start by having you tell us a little bit about yourself and your background.

Melissa
Hau mitakuyapi – Melissa Buffalo emaciyapi ye, micinka num yunke, kangi wakpe oyanke nah, meskwaki hematahan. ​​Good afternoon, everyone. Again, I just introduced myself in Lakota, which is very important to me. My name is Melissa Buffalo. I’m an enrolled member of the Meskwaki nation in Iowa. I’m also Dakota from the Crow Creek and Laurel Sioux tribes in South Dakota. I let you know I’m a mother of two. I’ve been with AICF which we call for short, little over four years now, which has been exciting.

Kim
That’s wonderful. I really admire your work at the Foundation. Melissa, tell our listeners a little bit about the work of the Foundation and what you do there. And maybe you could highlight a couple of your signature initiatives. I know you have some exciting things coming up.

Melissa
Yeah. So the American Indian Cancer Foundation is a national nonprofit organization that is housed in Minneapolis, Minnesota. It was established, you know, to really address those tremendous cancer inequities that are faced by Native people in Native communities. You know, our mission is to eliminate the cancer burdens of indigenous people through improved access to prevention, early detection, treatment and survivor support. And so across our program areas and all the work we do, we really do imagine a day where cancer is no longer the leading cause of death for Native people. And we do that through hard work, culturally appropriate community-based programming, and policy change that really affords indigenous people access to the best prevention and treatment strategies. And some of our larger campaigns and events that we do, we actually have one coming up – our 12th Annual Powwow for Hope: Dancing for Life, Love and Healing annual event that we’re excited to bring back in person this year. You know, the pandemic, we went virtual for four years just to really be safe and to think about those that are immunocompromised and wanting to stay safe. So it’s our, it’s both a community healing event and a fundraiser opportunity to bring our community together. So that is coming up at the end of September here in Minneapolis. Other, I would say our campaigns to raise awareness on the importance of cancer, such as Breast Cancer Awareness Month, which is coming up in October. So for us, it’s called Indigenous Pink.

Kim  
Fantastic. It’s great to hear about some of the signature things that are happening at the Foundation to raise awareness and to raise funds. Melissa, I know one of the things you do at the Foundation is to gather data. Could you share some of the cancer statistics among American Indians? For example, are American Indians more likely to be diagnosed with later stage cancers? Do they experience higher mortality rates from cancer? What does the data say?

Melissa 
I think unfortunately, yes, to all of that. Again, you know, we know there’s 574 tribes, some tribes are closer to access to care. You know, some have Indian Health Services within the reservation, some do not so, you know, some of the data really does show that American Indian, Alaskan Native people do have much higher rates of getting some of those several cancers such as lung, colorectal, liver, stomach and kidney cancers, again, compared to non-Hispanic white people in the United States. And so when we think about that, again, what’s that access to care and oftentimes, you know, when American Indians you know, get cancer it is, you know, at a later stage due to access to care you know. Another statistic that you know, we see a lot of, you know, we go to CDC, we lean on ACS – American Cancer Society – for some of that data and again, we understand that the data can sometimes be misclassified, under counted. And so taking all of that, I would say with a grain of salt. So one of the statistics that we look at is, you know the difference, for that Native American men were more likely to get cancer than Native American women, that difference ranged from 23% more likely for lung cancer compared to 129%, more likely for liver cancer. And so again, looking at compared to, again, non-Hispanic, white men, Native American men have that higher rates of getting liver, stomach, kidney, colorectal and lung. And, you know, again, how are we, what are what are those screenable cancers? And then how do we raise awareness on the signs and symptoms and what people should be aware about those ones that aren’t not necessarily screenable?

Kim
Got it. So let’s just drill down a little bit more on some of the access challenges that you’ve mentioned. Just talk a little bit more about what some of those access and logistical challenges are that American Indians face? For example, are we talking about distance? Are we talking about cost? Are we talking about awareness? Please elaborate on that a little bit, if you would.

Melissa
Yeah. So I guess that different levels, right, as an individual as a community, is it you know, health systems. Distance for sure – a lot of our tribal communities are located in rural communities, and oftentimes our Indian Health Service clinics do not have the machines to screen, so oftentimes, they have to refer people out to get screened for cancer or even some of that follow up care. You know, we know that Indian Health Service is not health insurance, you know, it’s funds through the government through treaties, that you know, I just, primary service is for primary care, not necessarily some of that preventative care. So how do we build some of that programming in and I think IHS is doing a good job at being able to bring some of that into their clinics. Cost, right. I think a lot of people oftentimes think about, I can’t afford that. So why should I get screened? I think there’s, you know, some communities that don’t have words for cancer in their language. In some of them, they think we talk about it, then it will happen, sometimes they don’t want to talk about it. But you know, how can we really think about being preventative and helping our relatives have that information to feel empowered to make a decision to get screened, or to think about healthcare in that I should do this annually, right, I should find a way to work with my clinic to know that I can go in annually and I have a relationship with my provider. And that’s another challenge, right? How many providers stay within IHS right? Oftentimes, they can probably go make money in a health system, larger health system. So how do we build relationships and build understanding for both the individual but also the provider in the health system side? How can we help them have more information, feel more knowledgeable when working with our population to be able to build relationships, and build trust to get our relatives through the door to want to get screened for cancer? Um, some of the other challenges when we think about barriers, you know, what is access to healthy food? What is access to being active physically, right, what is, you know, can I work out outside? Do I have access to various gyms? Do I have access to healthy foods, you know, what are, we’re seeing a lot of our indigenous foods being revitalized, which is amazing. You know, how many people have access to those relatives and those elders and those knowledge keepers that have that information to be able to share it and for us to revitalize and bring it back to work?

Kim
Wow, really great insights. Thank you for that. I learned, for example, what you’re mentioning about in many native languages, there aren’t even words for cancer or folks don’t want to talk about it. In my work with the Navajo Nation, I learned that the way that they describe cancer, as it loosely translates is the wound that does not heal. So it’s a sense, perhaps it is not curable. Folks don’t even want to get screened, or get tested because of that perception. It’s really interesting to reinforce those ideas, Melissa, you know, I’ve learned over the years and, and you touched on this a little bit that the Indian Health Service does not provide cancer care for American Indians. I know it’s often a myth or a misconception that the US government provides all health care for all American Indians. And in fact, it’s not true. And IHS mainly provides primary care. So Is that true, in fact, and is that creating a barrier to cancer care in your estimation?

Melissa
Um, so that’s like, a very complicated answer, right? It’s not a yes or a no. Understanding how much the government appropriates funds to Indian Health Service, just as they do any other agency, right? It’s trying to get more funds. It’s trying to understand how to get more funds to our to Indian Health Service to go into all of the tribal IHS’s across the United States. Um, you know, we think about what are the numbers IHS’s have and how we can use that data to make decisions, right, to get more data. But again, we look at IHS’s, um, you know, vision and mission, I think is, you know, primary care. So being able to have individuals come in more for if they’re sick, right. And then oftentimes we hear about our relatives needing to be referred out for care. And so I think it is a barrier. And I think there needs to be more awareness or how we can get more folks to advocate for more funds to come to IHS because it’s not that those folks working for IHS at headquarters are not fighting to get more dollars in their door. And so this, I think it’s a very hard question to want to, as a nonprofit, right? Like, how do we work with IHS? How do we work with other health care systems? How do we help reduce some of these barriers to care so we can bring information to our communities?

Kim
Well, I know that there are a lot of players involved. We’re all in this together, we could have a very lengthy policy discussion probably about IHS, and its history, but no time today on the podcast for that. But let’s keep going. And I want to talk about some of these challenges. When we think about some of the barriers American Indians face, do you believe we’re in need of a better screening and early detection tools that can help bridge some of the gaps that we’ve discussed? I know right now, for example, we’re really only screening for five different cancers. But oftentimes, we know it’s cancers that we’re not screening for, that are being diagnosed in later stages. So what are your thoughts about that?

Melissa
Yes, it is bringing more education and awareness to helping people understand, right, you have better options. The earlier you get screened in the early, you know, early detection, early diagnosis, more options for treatment, right. Bringing information such as access to clinical trials to our tribal communities, to these rural communities, and how they can access that information. I think there’s so many advancements in cancer care, but for us, and trying to bring education and awareness to the individual level to the community level is really, how do we bring the information on why you should get screened? You know, who are you getting screened for? You know, what are the risks? What are the, some signs and symptoms that people should be aware about? But again, it goes back to also, how can we help health systems bring, find ways to build trust with their community so that we get them through the door and get screened. And, you know, there’s programs across the United States that work to get folks screens such as the National Breast and Cervical Early Detection Program through CDC, out of our State Health Departments, most of the state health departments have that funding, it gives access to uninsured or underinsured women who are eligible for screening and being able to reimburse the clinics, you know, if there is a diagnostics and what that screening looks like. It’s all easier said than done. But yeah, better screening, you know, early detection tools, how can we those, like you said, the cancers that aren’t necessarily screenable, you know, are we seeing a rise in those numbers, especially post pandemic? What does that mean to bring information? And, you know, if my stomach hurts, how do I know like, do I be nervous that it’s kidney cancer? Or is it just something little that, you know, I just can address for me?

Kim
Right, right. And I’m glad you brought up the issue of trust. Because I do think that is a critical issue in so many aspects of healthcare today. And I know, particularly with the American Indian population, there have been many decades of broken promises, things not delivered. So taking the time to build that trust, I think is only going to allow better access to taking the time to understand our communities to establish goodwill. I think it really is important to emphasize in the work that you’re describing, Melissa. We’ve had a chance to talk a little bit about multi-cancer, early detection blood tests that are emerging, in fact that we have one on the market now. Others are coming along for sure. But what are your thoughts about multi-cancer, early detection, about that blood test, a simple blood test emerging as another tool in the toolbox for early detection? Could you see that as a potential solution? Again, another tool for our Native American populations?

Melissa
Yes, because I want to be around longer for my kids, right for my relatives. And so again, for us, it’s not just an individual decision, it’s being able to know that I’m doing this for somebody else. I think about again, yes, we always want more tools in our toolbox. And that’s what we do at AICF is being able to give more tools and provide technical assistance to communities, to tribal communities, and really lean on their wisdom and knowledge. But how do we bring this information to a community that resonates, that builds trust and that really, I think, how do we get access? How do our communities know about this? And how do our IHS providers know that these things are out there when they’re probably so behind on seeing patients for primary care? Right now we have communities, right, every all the kids are going in for physicals. Communication is a barrier in our community, how do we get this information to these rural communities? If we think about, you said, the word simple and like, is it really as simple as we make it sound? And it’s not there, how do we really get it out in our communities? Same as that, you know, when we have again, access to clinical trials, it is really building trust with community and helping them understand that, you know, there are research projects, there are tools in the toolbox that are there to help them. And so, you know, knowing that there’s been mistrust done in the healthcare systems for our relatives for many years, and probably continues. So again, how do we help bring communication and education to our communities so that blood tests do become normal for our relatives?

Kim
Yes, and you’re absolutely right. Simple? No, none of it’s simple. I appreciate you pointing that out. Melissa. Melissa, take a minute now to tell our listeners what your Foundation, the American Indian Cancer Foundation, is doing to raise awareness of the importance of screening and early detection. We talked about awareness and education and the importance of that, but how are you doing that at a grassroots level? How are you getting out into communities to educate and to inform?

Melissa
Yeah, this also brings me back to that question you asked earlier about, you know, about the work of Foundation, but also what drew me here. And I think this is it, being able to see the work that we do, you know, similar to other entities – ACS, you know, CDC – but we do it, but why AICF and why the work that we do is because we do it in a culturally tailored approach, right, we want to understand those community and system level barriers. We want to know that those individual barriers to preventative care, we also resonate, right. A lot of my staff, both American Indian, non-American Indian, have experience with family members who have been impacted by cancer. Um, and so some of when I think about again, you know, what do we do and why AICF, and it’s exciting for me, despite knowing the connection to cancer that I have. We do campaign, awareness campaigns, I told you little bit about that Indigenous Pink, right? How do we bring the information in a way that resonates but also lets the community know that, right, as a community health worker, as a nurse, as a provider, you know your community. So we want to give funds right now to 15 clinics to provide events and, you know, small activities for the community to have more information to be able to know what it means to get a mammogram and why they should get a mammogram. November is Lung Cancer Awareness. We are, our campaign is called Sacred Breath, you know, how can we raise awareness on the importance of understanding breath, lungs as sacred and that, you know, again, our connection to tobacco is not only through commercial, it’s also through sacred tobacco. To, you know, we have three program areas, we have research and evaluation, prevention and policy and cancer equity, which is working with health systems, tribal communities to find evidence-based interventions, for communities to improve their screening rates. Our research and evaluation team, right now we have a research project that is going to work with providers in a large health system to bring cultural competency training. So doing that through a pre and post-test, helping again, communities and clinics to have more information when they’re working with communities.

Kim
Fantastic. That’s terrific, Melissa, I think that our listeners may want to learn more about the work of the American Indian Cancer Foundation. Can you tell us how they can learn about you? What is your website? How can they find out more about the great work that you’re doing?

Melissa
Yeah, thank you. You can go to americanindiancancer.org. And then we are very present on social media, Facebook, Instagram, LinkedIn, Twitter, and then YouTube. Even you know, bringing that information to some of our newer employees like, man, there’s so much information out there for you to learn about what has been done in the past here at AICF, really leaning in on our YouTube and some of the webinars we’ve had over the past 11-12 years.

Kim
Fantastic. Congratulations. Melissa Buffalo, CEO of the American Indian Cancer Foundation. Thank you for joining us today. We’ve learned so much from the conversation. This is The Cancer SIGNAL presented by GRAIL. I’m Kim Thiboldeaux. Please rate and review our podcast, and be sure to subscribe to learn more about the impact of early cancer detection on future episodes.