American Indians (AIs) and Alaska Natives (ANs) are the only racial groups with documented, statistically significant geographic differences in cancer incidence, mortality, and survival compared with all other racial groups in the United States, according to Linda Burhansstipanov, MSPH, DrPH, member of the Cherokee Nation of Oklahoma and president of Native American Cancer Initiatives, Inc.
“Overall, there has been great progress in reducing cancer death rates in the US among Whites, and particularly non-Hispanic Whites. But we are not seeing that in American Indians and Alaska natives. Our mortality rates are basically the same—or have increased slightly—since the last data set, and these data sets are released about every 8 years in Indian Country.”
Cancer is the second leading cause of death in all AI populations over the age of 45 years, and it is the leading cause of death for AN women over the age of 45. AIs and ANs have the poorest survival of any racial/ethnic group in the United States, and the cancer incidence continues to increase.
Dr Burhansstipanov reminded the audience that Alaska is as large as the contiguous 48 states combined, and AIs reside in every state. In other words, knowing how to provide oncology care to people from Indigenous populations is a necessary skill for all navigators, not just for those living in the areas in which these populations are more densely concentrated (ie, Alaska, the Northern and Southern Plains).
“We’re a hidden population within a lot of the areas where you’re working,” she said.
Cancer in AIs/ANs in the United States
Compared with non-Hispanic White people in the United States, Native Americans have higher rates of lung, colorectal, liver, stomach, and kidney cancers. However, of these, only lung and colorectal cancers are detectable by screening.
The CDC primarily funds screenable cancers (breast, cervix, colon, lung, and prostate), which creates a huge barrier for Indigenous populations. The CDC, along with state public health departments, assume that Indigenous public health programs have the infrastructure to pick up the slack, but the vast majority do not; of 575 federally recognized tribes and several hundred state-recognized tribes, about 7 have comprehensive cancer programs.
Data from the CDC show that over 60% of the cancers occurring among AIs and ANs are actually not cancers detectable by screening. According to Dr Burhansstipanov, it is imperative that Indigenous public health programs expand their cancer programs beyond screenable cancers.
Comparing Racial Groups
The difference in cancer mortality rates between AIs/ANs and non-Hispanic Whites can be attributed to a number of causes. Compared with non-Hispanic Whites, AIs/ANs are poorer, younger, and less educated; have more risky behaviors/conditions (diabetes, obesity, smoking); are less likely to take part in cancer screening; and are more likely to be diagnosed with late-stage cancer (often with multiple comorbidities, such as diabetes and cardiovascular disease).
AIs/ANs also have higher rates of underinsurance (even with the Affordable Care Act), and are unlikely to know how to use private health insurance. All of these disparities combined result in fewer treatment options, poorly managed side effects, decreased quality of life, and premature death.
The Role of Native Patient Navigators
According to Dr Burhansstipanov, cultural native patient navigators (NPNs) can be a solution to more than half of the issues faced by Indigenous people seeking cancer care. She pointed out that while NPNs are vital to educating patients and working as liaisons within the oncology team, they do not give medical advice unless they are licensed nurses or licensed social workers.
The Indigenous Peoples Navigation Network (IPNN) is a “local” navigator network initiated through AONN+. IPNN currently has 58 members and has been hosting webinars since September 2021.
IPNN provides a virtual support program to address culturally and geographically unique challenges and solutions of Indigenous navigation programs. The focus of IPNN is on sharing stories of how navigation programs have overcome challenges in culturally respectful ways; this is particularly important because many NPNs work in isolation.
“Storytelling is our natural way to communicate,” she said. “This program gives us a chance to talk with one another and share information about programs that are working really well, as well as what we need to do differently in other programs.”
These stories may help navigators working in another region or continent to try something new or modify what was done to be locally appropriate to their own setting, she added.
Why Indigenous/Native Patient Navigators?
Navigation has now been proved to work in all racial and underserved groups, but NPNs (sometimes referred to as “cultural navigators”) are particularly skilled at addressing unique cultural issues.
“If you are not from a local area, you’re not going to know that area’s subtle cultural issues,” she said. “I have great experience working with my tribe in Oklahoma, but when I go to a different setting, I still have to learn, just as you have to learn when you go into a new area.”
Indigenous/cultural navigator programs are crucial because they respect a culture’s unique biases and beliefs.
“A common belief held by many up until the last 10 years or so is that you don’t say the word ‘cancer,’” Dr Burhansstipanov explained. “Because if you say the word, you’re inviting the cancer spirit into your body or into the body of your loved one.”
Indigenous groups are often reminded of their poor health outcomes, but NPNs can remind them of their cultural strengths, such as caring for their communities and for Mother Earth.
“One of our common sayings is that ‘we stand on the shoulders of our ancestors,’” she said. “This encourages us to be healthy like our ancestors.”
NPNs understand the complexities and shortcomings (eg, underfunding) of the Indian Health Service (IHS) and Purchased/Referred Care (PRC).
“IHS receives fewer monies per patient than prisoners,” she said. “There is no other federal program with this little money, and we do not have oncologists; we always have to travel for cancer care.”
Traveling for medical care within the IHS program is done through PRC; this system has extremely limited funding, and since AIs/ANs are often diagnosed with cancer and treated at later stages, 1 person could end up using the bulk of the allocated money for advanced cancer treatment. “One person could feel like a burden to the entire community,” she said. “It’s a very difficult system.”
But only about 12% of AIs/ANs access care through IHS. That statistic, combined with the fact that almost half of the population travels more than 100 miles one way to access cancer care, and 15% travel more than 400 miles one way to access treatment, calls even greater attention to the importance of navigators in these communities.
NPNs also understand the seriousness of ceremonies and protocols, and what is and is not appropriate to do in different settings.
According to Dr Burhansstipanov, NPNs even communicate differently than descendants from Europe and elsewhere (ie, using plural “we” instead of “I”), paying attention to cultural nuances in speech (ie, using longer pauses between speakers, speaking more slowly in some regions, and not speaking over one another), and using storytelling.
Importantly, storytelling can impact data collection/family history. For example, “the woman who taught you beadwork” might be used instead of mother, and “others from the same womb” are brothers and sisters.
“We do this because we spiritually adopt other people all the time in our community, and when we adopt other people, they are of the same blood,” she explained. “We don’t make a distinction unless we say something like, ‘did they come from the same womb?’”
Just like all navigators, NPNs provide patients with consistent support throughout their entire cancer journey.
“But the key component is that they have to be respected by the community,” she noted. “And we like them to model healthy behaviors.”
She noted that Indigenous communities do not put a lot of emphasis on being “Hollywood thin,” but taking steps toward healthier choices is just as important for patients as it is for navigators.
“You don’t have to be slender or even normal weight to be a good navigator, but if you’re overweight, maybe you’re taking steps to be more physically active. Or if you’re a smoker, maybe you’re trying to quit,” she said. “But the key component to being a good native patient navigator is having passion for helping our members.”