A Community Effort
Local programs within Native American communities are at the forefront of an effort to increase cancer screening and reduce cancer deaths.
By Sue Rochman
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.
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. (See “Health Care for Native Americans.
”) 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. (See “Cancer Among Native Americans.
”) 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.”
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.’ ”