ASCO Daily News How to Advance Cancer Care for Native Americans
Native American oncologist Dr. Amanda Bruegl and Dr. Noelle LoConte discuss culturally tailored interventions and the importance of community engagement to advance cancer prevention, diagnosis, and treatment for Native communities.
TRANSCRIPT
ASCO Daily News: Hello and welcome to the ASCO Daily News Podcast. I'm Geraldine Carroll, a reporter for the ASCO Daily News. On today's episode, we'll be discussing cancer care for Native American communities who face unique challenges and disparities in accessing and receiving cancer care. I'm delighted to be joined by two oncologists who will be sharing their insights on ways to advance cancer prevention, diagnosis, and treatment through culturally tailored interventions and community-based programs for high-risk Native Americans whose issues are chronically overlooked in the healthcare system, according to experts.
Dr. Amanda Bruegl is an associate professor of obstetrics and gynecology at the Oregon Health and Science University School of Medicine. She is a gynecologic oncologist at the OHSU Knight Cancer Institute and a citizen of the Oneida Nation and descendant of Stockbridge-Munsee. Dr. Noelle LoConte is an associate professor of medicine at the University of Wisconsin Madison Carbone Cancer Center where she also serves as a GI medical oncologist, geriatrician and leads community outreach.
Full disclosures are available in the transcript of this episode.
Dr. LoConte and Dr. Bruegl, it's great to have you on the podcast today.
Dr. Noelle LoConte: Thanks so much for having me.
Dr. Amanda Bruegl: Thank you for having us.
ASCO Daily News: Dr. Bruegl, I'd like to start by asking you to tell us a bit about your background and how it has influenced your career and interests as a gynecologic oncologist.
Dr. Amanda Bruegl: I grew up in Wisconsin and I have a Native parent and a non-Native parent. And so having an awareness of both cultural influences in my life has really shaped my interest in cancer prevention. Seeing the high rates of preventable death in cancer among Native populations in gynecologic cancers, in particular, has really driven me to dedicate my research career toward decreasing the morbidity and mortality of cervical cancer among Native women.
ASCO Daily News: Well, can you tell us about your work in cancer prevention, specifically cervical cancer? The data shows that Native Americans in Oregon get cervical cancer one and a half times more than the general state population and die from it two times more often. What are the factors, the barriers, that are contributing to these high rates of cervical cancer?
Dr. Amanda Bruegl: The data in Oregon is actually not just limited to Oregon. Our group did some work in collaboration with the Northwest Portland Area Indian Health Board Tribal Epidemiology Center, and we found that, as you stated, the rates of cervical cancer are one and a half times that of non-Hispanic Whites and the rate of death is about twice. And that's true for the Pacific Northwest. And if you dig deeper into the literature, you see that these rates are true across Indian Country, sometimes worse. When we looked at the age groups, we found that older women had three times the rate of mortality. So looking at like 45 to 65. As I was looking through the literature to figure out, well, why is this, we found that there are very, very few funded studies that even look at this. We have a known persistent disparity that is chronically understudied and underfunded. And so I'm trying to do work in this arena to explore this further.
A follow up study that we did was looking at whether we are using the prevention tools. So it's common across the United States that we have two very powerful prevention tools. So participation in cervical cancer screening doesn't necessarily prevent cervical cancer, but you can have early detection of pre-invasive disease or detection of early-stage disease, which is highly curable. And then we also have HPV vaccination, something geared towards the youth in our communities across the U.S. HPV vaccination starting at age 9 with a goal of complete vaccination by the age of 12. So we looked at: Are we using these two tools in Indian Country? And what we found was that participation in cervical cancer screening, looking at who is up-to- date among Natives, and we found that overall the population had about 60% rates of up-to- date on cervical cancer screening compared to general US rates, which are in like the high 70s or low 80s. And then when we looked at that age group that has higher rates of mortality, we actually found that there's only about a 50% rate of up-to-date screening. So we know in one arena people aren't participating in screening. And there's a variety of different contributors to that. There's access to care. How far do you have to travel to get to a provider who will provide cervical cancer screening? Among Native women, there's an over 50% rate of history of sexual trauma, sexual violence, pelvic exam trauma. It's a huge barrier to coming in for this very sensitive exam. There is also mistrust with the medical system in general. There's high turnover of providers at Indian Health Service Clinics.
The clinic that I'm currently working at now, so I do outreach at a clinic one day a month and I'm the longest standing doc at that clinic and I'm a consultant who comes one day a month. I've been there since 2016. And so when you can't develop a relationship with a provider and develop trust and there's just this churn of new people every three to six months, developing a relationship to allow someone to feel comfortable with a very personal and private examination can be a huge barrier.
On the HPV vaccination side, we found that the numbers for HPV vaccination were pretty optimistic. So the numbers have been going up since our study period started in 2015. The clinics in the Pacific Northwest that are serving Native populations are doing a great job with education, outreach and increasing the numbers. The group with the greatest rates of HPV vaccination are for people assigned female at birth in the 13-18 age group. They are the only group that is approaching the Healthy People 2030 goal. But there's still work to be done in this arena. Those are some big drivers of why this persistent disparity continues.
ASCO Daily News: Absolutely. You mentioned some very serious barriers. Sexual trauma, mistrust, long distance to travel to clinics. Looking ahead, can you tell us about potential screening tools that could improve screening? And I also wanted to ask you about innovations you're excited about that could be potentially incorporated into practice to increase the ability and comfort of your patients to screening and access to HPV vaccination.
Dr. Amanda Bruegl: So, in terms of cervical cancer screening and how to increase the rates, there are a number of different things in the literature broadly across populations that really show that knowledge and awareness of cervical cancer and cervical cancer screening guidelines is associated with guideline concordant care. And so ensuring that our patients in our communities know and understand what the recommendations are is very important. Efforts to provide education to women in the community, community stakeholders, and culturally tailored content can all be important for increasing the rates of cervical cancer participation.
Another thing that has the potential to really help improve screening rates is HPV self-collection. The FDA just recently approved HPV self-collection which can help empower an individual to do their own testing on their own body and not have someone else place a speculum in a private personal area where they're not comfortable. Some of the tribes in our region are starting to adopt this practice. And I just gave a talk to the regional Indian Health Service medical directors and have had really positive feedback about clinics working towards bringing this into their practice. I hope that the FDA can move forward with allowing patients to do this in the comfort of their own home. Sadly, the FDA in their evaluations decided it had to be a clinic administered test. So someone still has to go through the barrier of finding time to, if they have caregiver responsibilities or work, to have these responsibilities taken care of for someone else so they can drive to a clinic. So these barriers of transportation and caregiving are not addressed by this. It addresses some of the trauma, that barrier. And so I think in the US, we can do better about bringing this like FIT testing to our patients. I really hope and challenge our country to move forward with that a bit more.
Geraldine Carroll: Thanks, Dr. Bruegl. I'll come back to you in a moment, but first I'd like to switch gears and address some of the challenges faced by Native communities in Wisconsin that were featured in a fascinating study presented by our guest, Dr. Noelle LoConte, at the recent ASCO Quality Care Symposium. The study found that radon levels in Native lands in Wisconsin were much higher than anticipated and may explain higher rates of lung cancer among Native communities in the state. Radon is the second leading cause of lung cancer in the U.S. So, Dr. LoConte, can you tell us more about this study and your incredible partnership with the Stockbridge-Munsee Band of the Mohican Nation Health Center in this work?
Dr. Noelle LoConte: You bet. Thanks for the interest. First of all, I think it's just an incredible privilege to work with all of these communities. So, I wanted to say at the jump that this was a joint project led by the cancer center that I'm affiliated with, but also with the Stockbridge-Munsee community. They approved the project and they designed it with us, and they retain ownership of the data. Data sovereignty is an important issue when you're doing this work. But we came to them wanting to work on something around cancer. I actually thought maybe colorectal cancer screening. But in meeting with the health center and the tribal community members, it became clear that they were more concerned that they had intergenerational rates of cancer, and they felt that they were being poisoned by their land. And that brought me to the state Environmental Health Program. And we looked at some data and realized, one, their lung cancer rates were quite high, but two, their radon testing rates were quite low. And that that was a place where we thought we couldn't make some forward momentum.
So, we designed a program to educate around radon and radon testing and mitigation and then tested all the homes on the reservation. And we successfully tested all homes for radon and then successfully mitigated all the homes that tested over four picocuries per liter, which is the recommended level at which you should mitigate per the EPA, the Environmental Protection Agency. The statewide average for Wisconsin is 10% positive. And amongst homes that had a basement, which is thought to be the highest risk kind of dwelling in the Stockbridge-Munsee Reservation community, the positive rate was 77%. And when you take all the homes together because we had some homes with crawl spaces or slab foundation, it was around, I believe, 55% positive, so much higher than 10%.
ASCO Daily News: Well, that data is just striking. Your study certainly illustrates the vital role that cancer centers can play in mitigating structural determinants of health among Native communities, such as with housing quality. Do you think this will inspire a similar approach in other regions of the country?
Dr. Noelle LoConte: Yeah, I think this work was possible because of philanthropy. It is very, very hard to get grant funding for mitigation, in particular. Mitigation is usually done once in the life of the dwelling, but it is very, very expensive. A cheap mitigation is $750, and many are many thousands of dollars especially when you're looking at very rural communities where there's not really a mitigator within hundreds of miles and you have to really negotiate to get somebody to come out there. Every cancer center that's designated by the National Cancer Institute has to have a community outreach and engagement unit or program. I would argue that rather than us generating reports describing disparities, that this kind of work to actually dismantle these determinants of health and move power back into the community is an ideal role for a cancer center. But the funding was definitely a tricky piece of it. And I would hope that we could either envision funding mechanisms that allow for this kind of direct service to communities, or we can continue to work with philanthropic agencies to fund this.
ASCO Daily News: Well, looking through a wider lens at the experience of Native communities navigating cancer care, I'd like to ask each of you to comment on how you think the oncology community can better support and serve high-risk Native populations. What message would you like oncologists to take away from this discussion today? Dr. Bruegl, would you like to respond first?
Dr. Amanda Bruegl: There's so many layers to needs in our communities. First and foremost, it's important to understand that American Indians and Alaska Natives are sovereign people, sovereign nations. We've been written into the US Constitution as citizens of our own tribes. And it's important to remember that when working with our populations. I think it's also really important to remember that there's treaty law that promised healthcare to our communities. And you see that we are underfunded in all aspects of healthcare, and it's a driver. And people on the healthcare side of things need to remember we represent the failures of the healthcare system to care for our Native communities. Whether or not you wake up in the morning with a goal to help, you have to remember that you represent the institution and the history of this country and are going to be asked to prove yourself in a genuine fashion. And that takes time.
I think for people who are in research, it's really important to think about how do you engage and partner with tribal communities so that we're not chronically left behind and left out of study? We seldom show up in the data, and we have to find our own data. Tribal epidemiology centers have been really paramount in helping tribes get access to their data and analyze their data. But you can see in trial after trial after trial, we're sort of shoved into the other box. And so it's so difficult to understand how the cancer story relates to us and how do we improve it?
ASCO Daily News: Thank you, Dr. Bruegl. Dr. LoConte, would you like to comment on this as well?
Dr. Noelle LoConte: Yeah. I had jotted down a few points. Many are going to be a little bit of a repetition here, but I think the overarching theme is that the goals for academic medicine often are not the goals of the community that you may be seeking to work in, and so being able to pivot was key to the success of my project, I think. Can't underestimate the importance of trust. And trust takes a lot of time and a lot of showing up and a lot of being consistent and delivering on what you say you're going to do. And there's a lot of turnover in academic medicine. People leave institutions, move on for promotions. None of that is going to help strengthen these relationships. So I think institutions would be wise to invest in people that stay. I think there should be things like retention bonuses for those of us that stay in places and do community work. It's certainly not the sexy stuff. It's not what gets you in the Plenary at the ASCO Annual Meeting, for example, but I was beyond delighted that I was on the podium for the ASCO Quality Care Symposium. And I think continuing to elevate this work as meaningful and important work, just as important as clinical trials and new drugs, is really important.
I would like to second the motion or the thought that we need to support full funding for the Indian Health Services. It is a promise we made that we continue to underdeliver on that continues to harm patients every day, particularly in the latter half of the year when they run out of funding pretty consistently. For those of us that are non-Native doing this work, to know the history of the community that you're working in and be really mindful of that but also know the role that your institution played in propagating some of these harms. And I think we need more Native physicians that really will help to have concordance with patients and physicians. And so as much as we can support getting more Native folks starting really early – high school, middle school, interested in medicine and biomedical research, all the way through medical school residency fellowship would be really, really impactful. We have a program here founded by Amanda's husband called the Native American Center for Health Professions, or NACHP. It's really a feather in our cap here and I would love to see all medical schools have some sort of pathway program like that. We won't get out of this hole until we start to really take that seriously.
ASCO Daily News: Well, thank you so much, Dr. LoConte and Dr. Bruegl for taking the time and showing up for Native communities, and all your work to advance cancer care. We are certainly very grateful for your time today and we will embed links to all of the studies discussed in the transcript of this episode. So thank you again, Dr. LoConte and Dr. Bruegl.
Dr. Noelle LoConte: You're welcome.
Dr. Amanda Bruegl: Thank you for having us.
ASCO Daily News: And thank you to our listeners for your time today. Again, you'll find links to the studies we discussed today in the transcript of this episode. Finally, if you value the insights that you hear on the ASCO Daily News Podcast, please take a moment to rate, review and subscribe wherever you get your podcasts.
Disclaimer:
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
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Disclosures:
Dr. Amanda Bruegl – No relationships to disclose
Dr. Noelle LoConte:
Consulting or Advisory Role: Abbvie, PDGx
Research Funding: Exact Sciences