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Improvement may be on the horizon

ROCHESTER, Minn. – American Indians and Alaska Natives have the poorest five-year cancer survival rates of any other racial group, statistics say. But better numbers may be on the horizon now that a nationwide action plan is working for improvement.

“Yes, there are problems, but there are many people who are working hard to change those statistics,” said Dr. Judith Kaur, a Choctaw/Cherokee oncologist who chaired a Native workgroup advising the plan.

In 2002, the Centers for Disease Control and Prevention and the Lance Armstrong Foundation collaborated to “chart a course for comprehensively addressing cancer survivorship.” That course included drawing up a separate action plan for American Indians, as well as blacks.

What was groundbreaking was that Native voices were heard in the survey that set out to identify their needs. The study became the CDC/LAF’s “A National Action Plan for Cancer Survivorship: Native American Priorities.”

The study’s workgroup was led by American Indian health care leaders. They worked with statements from 129 Native cancer survivors. Those statements were used to identify “public health issues” standing in the way of survivorship.

Overall, “access to care” was found to be the top issue. Also, cutting across four top issues was the need for “patient navigation,” or, in everyday terms, having someone to guide the patient through the health care system.

Kaur brought to the workgroup her experience as director of the Mayo Clinic Comprehensive Care Center’s Native American Programs, Spirit of EAGLES.

She pointed out that the action plan, published two years ago, is taking hold. “There is no doubt that there are more Native American survivors today than ever before.”

The action plan was designed for state agencies and others so they could better know what needs to be done to improve quality of life and survivorship, and focus on those priorities.

Soon after the study came out, the LAF “started funding different survivor-based organizations in Indian country,” Kaur reported. “We have done cancer control training with the CDC for leaders involved in comprehensive cancer control in Indian country.”

Behind “access to quality care and services,” the report identified the No. 2 need as “education, training and communication.” Third was “infrastructure, programs and policies,” for making change. Fourth was “applied research and surveillance.” (Surveillance is collecting, analyzing and using cancer data.)

Access is a problem unique to Indian country for many reasons. “Many complex factors, including health care funding, geography, cultural issues and the relationship between tribal and U.S. governments can affect a survivor’s ability to access quality care,” the study found.

Other obstacles are the need for child care and transportation to clinics.

All cancer patients should have “timely” access to “the latest and most effective treatments available, including clinical trials,” the study said. Apparently, this has not always been done.

One person whose comments were used in the study said this: “You wait six months for that Medicaid to get placed. If you have to go through surgery and … chemo and radiation, sometimes it takes longer and it is that [many] more days that the cancer is spreading.”

One central tool for survivorship is that the patients understand what is going on in their bodies and what their choices are for treatment. Having someone to show them is part of what is known in health care circles as “patient navigation.”

Kaur explained. “Patient navigation is a major thing for our American Indian community because no specialty care really occurs on the reservation, so unlike someone who lives in the city, maybe down the street from Sloan Kettering, people need to have someone guide them in where to go, why they’re having this test or that test, what their choices are as far as treatments.”

Sometimes the best people to get cancer patients down the road toward survival are fellow survivors from their own culture.

“Local cancer survivors can help relay culturally acceptable and powerful messages about cancer survivorship,” the action plan concluded.

“I personally think that bringing survivors into the message of going through screening and cancer treatment has been critical to people even thinking about going for those procedures,” Kaur added. “Because if you didn’t think you could survive, why would you go get a test that says you have an incurable illness?”

Survivors are becoming more vocal today to help others, she sees. “I’m in my 60s and I started working on these issues about 30 years ago. I used to go out to the reservations and try to get groups of women together before the bingo sessions in the local bingo halls to talk about breast cancer and Pap smears and screenings. Every time I did that, there would be some woman that would come up to me and say, ‘You know, Dr. Kaur, I had breast cancer but nobody here knows that because they don’t talk about that.’ They’d say, ‘But maybe it’s time I started talking to my sisters in this community.’

“Because the people got sent away and were reluctant to talk about such a taboo topic, people didn’t know that you could actually survive cancer. That has changed so much. We now have the pink shawls and the yellow shirts that let people know they are a survivor or part of the family that had survivors of cancer.”

Asked whether there is an obstacle to traditional Indian people trusting mainstream medicine, Kaur said she has observed the vast majority combining the best of both worlds. “There is no doubt that we have a great deal of respect throughout our Indian communities of different forms of healing, and traditional healers are always going to be part of the system. But people have come to realize that some diseases like cancer are relatively new to the population, and traditional healers didn’t have to deal with cancer as a problem in prior generations. We have traditional healers asking us about cancer, so they can understand.”

“Patients will go wherever they think they can get good, compassionate care,” Kaur said, “and someone who offers them hope.”

The study was aided by Native American Cancer Research Inc., a Pine, Colo.-based survivorship organization directed by Linda Burhansstipanov of the Cherokee Nation of Oklahoma. Burhansstipanov was another key member of the Action Plan workgroup.

Other Native American Workgroup Members were Dorcas Bloom, Siberian Yupik, NACES Native Survivors Advisory Board; Patrician Canfield, Seneca Nation of Indians Health Department; Michael George Sr., Coeur D’Alene Tribe training/safety officer; Ralaine “Rae” Hinton, Liverpool, N.Y.; Gerald L. Ignace, M.D., Milwaukee, Wis.; Mary Reiner, Santee Sioux, John T. Vucurevich Cancer Care Institute, Rapid City, S.D.; Doug Sixkiller-St. Clair, Ph.D., Shoshone Cherokee Nation of Oklahoma, vice president of Institutional Development and Research, Tohono O’odham Community College, Sells, Ariz.; Arlene Wahwasuck, RN (retired), Prairie Band Potawatomi, Horton, Kan.; and Celeste Whitewolf, Confederated Tribes of Umatilla, Tigard, Ore.

Addressing the poor survival statistics among the Native population, the study concluded that “it is important that the public health community mobilizes to address the needs in these communities. By using ‘A National Action Plan for Cancer Survivorship’ as a guide, the public health community can better respond to this disparity and effectively address the needs” of these survivors.