JOY RIVERA, a member of the Snipe Clan of the Seneka Nation Haudenosaunee People, has lived in South Minneapolis for 40 years. For American Indians like Rivera, South Minneapolis is a community hub. Native Americans make up less than 2.5 percent of residents in most parts of the city, but in one section of South Minneapolis, they account for nearly 50 percent.

Ceremonial dancers participated in the 2nd Annual Powwow for Hope celebration, a community event and fundraiser for the American Indian Cancer Foundation, held in St. Paul, Minnesota, in May 2013. They include, clockwise from top left: Robert DesJarlait (Red Lake Band of Ojibwe), Shane Mitchell (Lac du Flambeau Band of Ojibwe), Dennis Gilbert (Lac du Flambeau Band of Ojibwe), Carl Chalepah (Apache), and Alex Chargin’ Horse Copenace (Whitefish Bay First Nation). DesJarlait would find out less than a week after the 2013 Powwow for Hope that he had colon cancer. Photo by Ivy Vainio

Rivera spent many years in South Minneapolis working with young people, first as a teacher and then as the head of a health education program for indigenous youth. Now, as a community health educator and patient navigator for the Minnesota-based American Indian Cancer Foundation, she speaks with the adults in her neighborhood about why they need to get screened for colorectal cancer.

Numerous studies have demonstrated the positive results of these kinds of community-based cancer education programs, and Rivera embraces her role in reducing her community’s cancer risk. “I live in the community where I work,” says Rivera, 58. “I don’t check out of work and then go somewhere where I’ll never run into you. I will still see you in the store and still see you at the powwow.” The upside of that, she says, is people will walk up to her to ask questions about colorectal cancer screening or to report that they got screened. “The downside is some people avoid you, and I’ve had that happen many times. I’ll turn it into a joke. I’ll say, ‘I see you but you never say hi,’ and they’ll say, ‘It’s because I haven’t done what I was supposed to do.’ But I tell them I think it’s great if seeing me serves as your reminder to get screened.”

A People Left Behind

Compiling accurate statistics for cancer rates among Native Americans is difficult. According to 2012 figures, approximately 5.2 million people—a little less than 2 percent of the total U.S. population—are American Indians or Alaska Natives, many of whom are members of one of the 566 federally recognized Indian tribes. But the population, while nearly equivalent to that of metropolitan Atlanta, is spread throughout the country and served by both Indian and non-Indian health services programs.

In general, studies have found that cancer incidence rates among Native Americans are lower than they are for whites. But that big-picture view obscures the population’s higher death rates from cervical, kidney, liver, gallbladder, stomach and uterine cancers, as well as disparities in death rates for breast, colorectal and lung cancers in certain regions. There are other problems with the statistics as well, says Linda Burhansstipanov, a member of the Cherokee Nation of Oklahoma and the founding director of Native American Cancer Research Corporation, a nonprofit organization dedicated to cancer education with headquarters in Denver. For one thing, the lower rates of overall cancer diagnoses could reflect, in part, less access to cancer screening programs: In 2012, more than 27 percent of the Native American population under 65 lacked health insurance, compared with close to 15 percent of the under-65 U.S. population as a whole. Racial misclassification of American Indians as Hispanic or white on patient charts and death certificates—a recognized ongoing problem—contributes to undercounts as well.

In June 2014, a series of articles on cancer incidence and mortality among Native Americans from 1990 to 2009 was published in a special supplement to the American Journal of Public Health. The analyses were designed to correct racial misclassifications and provide geographical comparisons. ​​They clearly demonstrated a disturbing trend: During the studied time period, overall cancer incidence and mortality decreased for every racial and ethnic group except Native Americans.

“It’s not so much that American Indians get cancer more,” says Kris Rhodes, a member of the Ojibwe tribe and the executive director of the American Indian Cancer Foundation. “But there is a huge difference when it comes to mortality. In the last two decades, every other population has seen declining rates in mortality and it is really due to screening—being able to find cancer early when it can be treated. American Indian communities have not had those same benefits. We still have increasing mortality rates on several preventable cancers.” These include lung cancer, which is tied to Native Americans’ high smoking rates, as well as cervical and colorectal cancer, which can both be reduced through routine cancer screening.

That’s where people like Rhodes’ colleague Rivera come in. Trained patient navigators—people who guide patients through specific aspects of cancer care, such as screening or treatment—can help to increase early detection and reduce mortality, says Burhansstipanov. “There are so many subtleties in how we”—Native Americans—“talk about cancer,” she says. To be effective, “you need to know the culture.”

Health Care for Native Americans

Poverty and difficulty in obtaining health care still pose hurdles.

A Holistic Approach

For an outsider, learning the culture takes time and commitment. Valerie Eschiti, an associate professor at the University of Oklahoma Health Sciences Center College of Nursing, in Oklahoma City, has spent the past 10 years learning the ways of the Comanche Nation and other American Indians of the Southern Plains. Eschiti, a nurse who specializes in transcultural and holistic care, has become knowledgeable about the socioeconomic challenges, cultural differences and mistrust of governmental systems that can keep American Indians from getting cancer care—and is working alongside community members to identify their needs and implement educational programs. She also has learned how much she doesn’t know. She may have a Ph.D., she says, “but they know best. … It’s the Comanches who know what the Comanches need.”

Eschiti has focused most of her work in and around Lawton, an area 90 miles southwest of the university that is home to about 7,800 members of the Comanche Nation. Recently, Eschiti hired and trained Comanche members to work as patient navigators who inform other community members about cancer screening options, healthy eating practices and end-of-life care.

Eschiti worked with the navigators to organize focus groups in which Comanche members could make suggestions for how to best tailor invitations to informational cancer workshops and educational materials for a Comanche audience. Eschiti used all of the recommendations, which included incorporating pictures of city residents and well-known landmarks, Comanche colloquialisms and other familiar terms. “They were right,” says Eschiti. “We had more people attend the [cancer education] workshops than we had initially budgeted for.”

Stacey Weryackwe-Sanford, a licensed practical nurse, was one of the Comanche patient navigators. There is no question that the program improved the community’s awareness about cancer, says Weryackwe-Sanford, noting that she rarely heard people talking about cancer before she became a patient navigator. But once she began doing education and outreach, she says, she’d “hear the stories and hear people share their own experience or talk about their loved ones. … And you’d hear people walk away from our sessions and groups saying, ‘I really learned a lot.’ ”

Cancer Among Native Americans

Cancer death rates for Native Americans increased.

Traditions Matter

Kathleen Ragan, the Southeast community health educator for Native American Cancer Initiatives, a Colorado-based for-profit organization affiliated with Native American Cancer Research Corporation, often provides cancer education programs at community-focused events, such as powwows or traditional ceremonies. At these events, she says, “doing a program” goes beyond a simple presentation on cancer. “When I do a program,” she says, “it can mean going to a ceremony site and then helping them prepare and cook the morning meal. Then I’ll help clean up the pantry and round house and then maybe help clean up the grounds or help the women with something that needs to get done. Then I’ll help cook the lunch meal.”

After that, the Georgia native, who grew up learning about American Indian traditions from neighbors and friends, may start to set up the 10 to 15 camping chairs she brings with her, along with a canopy, a projector—and the portable power to run it—and prepare for the cancer education program she has been invited to offer. “Then they might listen to me,” she says. “And then I’ll sit around the fire all night and talk to them”—and the questions and stories about cancer begin to flow.

Kris Rhodes (Ojibwe), left, and Daanis Chosa (Bois Forte Band of Chippewa) of the American Indian Cancer Foundation attend the organization’s annual Powwow for Hope, a fundraiser that honors and supports Native American cancer survivors, in 2014. Photo by Ivy Vainio

During the past two years, Ragan, who until recently was her organization’s sole community cancer health educator in the six Southeastern states that make up her region, has seen her job expand to include patient navigation. This has involved sorting out paperwork fiascos for patients, making appointments for them, and addressing the everyday challenges faced by people who are poor, have a limited education, are uninsured or have no way to get to a clinic that is an hour away. “There were so many people with so many needs,” she says. “There is no one else for them to go to, so I help in any way that I can.”

In May 2013, Ragan set up a Facebook group to make it easier for people to ask for her assistance. It now counts more than 225 members. The Facebook page also helped Ragan encourage people to take part in a Native American Cancer Initiatives program that offered participants a $25 gift card if they underwent a recommended cancer screening test. “That can make a difference,” she says. “It means money for incidentals or gas.”

Drawing on tradition, the American Indian Cancer Foundation’s annual fundraiser, Powwow for Hope, celebrates Native American ways while honoring and supporting cancer survivors through ceremonial dances. Robert DesJarlait, 67, a member of the Red Lake Band of Ojibwe who lives in Wahkon, Minnesota, has been performing in traditional dances for 32 years. In 2013, he was the head male dancer at the event. Few knew that while he was dancing he was also awaiting the results of a biopsy that, less than a week later, would confirm he had colon cancer.

DesJarlait says the stage II cancer, which was treated with surgery, changed his priorities. “My Dad had stomach cancer in 1972, and my siblings and I … always had that fear we would get cancer at some point,” which was why he accepted the invitation to dance in 2013. But now, he says, one of his goals is to educate others about cancer and cancer screening, including screening for colorectal cancer. The foundation honored his survivorship and advocacy by asking him to return as the head male dancer at the 2014 Powwow for Hope.

Adding to the obstacles cancer educators face in most Native American communities are high rates of poverty, unemployment and substance abuse along with skepticism of the medical establishment—widely recognized consequences of the historical injustices Native Americans have faced, such as violations of treaty relationships, organized attempts at cultural assimilation and forced sterilization.

But one of the most formidable problems is tobacco. Overall, Native Americans have the highest prevalence of tobacco use of any single ethnicity or race in the United States: about 22 percent in 2012, according to the U.S. Centers for Disease Control and Prevention, though the rate can vary greatly by tribe or region. “Very few Native people will call a 1-800 quit line,” and that’s the primary resource available to help smokers quit, says Rhodes, of the American Indian Cancer Foundation. “They need to have someone to talk to them in person. It’s also incredibly challenging to quit when most people around you smoke. Fifty-nine percent of Native Americans [in Minnesota] smoke. It’s the norm.

“There’s also a complicated relationship with tobacco,” she continues. “We use it as part of our prayers and in ceremonies. … We also have to be sensitive to the fact that tribal economics are often based on tobacco sales. In poorer communities, tobacco sales are what are building our roads and health facilities. It is a constant challenge to discuss the cost and benefit of tobacco sales in Indian country.”

Strength in All Things

Eleanor McDaniel, a member of the Comanche Nation, lives about 15 miles outside of Lawton in the small Oklahoma town of Cache. McDaniel, 62, was the first Comanche woman to perform combat duty—six months in Operation Desert Shield and Operation Desert Storm during the Gulf War in 1990 and 1991. She’s also a breast cancer survivor. She was diagnosed in 1994 at age 41, when she went to see a doctor after a small knot she’d been ignoring in her breast became considerably uncomfortable.

Joy Rivera, left, spoke with Lillian Stand, middle, and Angeline Clark (both Red Lake Band of Ojibwe) during a visit to their apartment community in Minneapolis. Clark died in 2012. Photo by David Perdue

“Most of what I went through I had to find out on my own,” she recalls. “There was a cancer society [local office], and I went to them … but the only thing they could offer me was a blond wig.” Instead, she says, she turned inward. “My grandmother was a medicine woman, and she would say, ‘A clean heart, clean mind and clean body will give you strength in all things.’ I held on to that while going through war and in the middle of combat.” It’s also what McDaniel held on to, she says, “while I lay here weak as two kittens during my cancer treatment,” which consisted of a mastectomy followed by chemotherapy.

During the past 20 years, McDaniel says she has watched far too many deaths of friends and family members from cancer that might have been prevented.

“The only thing I feel that really helped [change things] was when Valerie [Eschiti] got into the community,” she continues. “She talked to people directly face-to-face and really provided an awareness to everyone about cancer. … When I was going through chemo, there were 10 other Comanches that were going [for treatment] and most were older than me, and we all went to the same clinic and saw the same oncologist and I am the only one still living. … Getting diagnosed [early enough] is the problem we are facing.”

Back in Minnesota, Rivera is helping to make that happen, at least for colorectal cancer. She has gotten more than 200 people in the Minneapolis–St. Paul metropolitan area screened for colorectal cancer over the past three years. At one point, the demand was so high for colonoscopy prep kits that Rivera says she was told the local American Indian pharmacy ran out of them.

Sometimes, Rivera says, she still thinks about one of the first men she talked with about cancer screening. “He fell on hard times or his phone wasn’t working, but still I’d always see him in the community.” It took him two and a half years, she says, but he finally got his colonoscopy.

Sue Rochman, a medical journalist based in San Francisco, was formerly a contributing editor of Cancer Today.