American Indian cancer statistics under reported

On the surface, American Indian mortality rates from cancer appear low.

For example breast cancer accounts for 25 out of every 100,000 deaths in the white population. Among American Indians, it accounts for only 12.1 out of every 100,000 deaths.

Figures such as these promote a false sense of security said Judith Salmon Kauer, assistant professor of medicine and a consultant in medical oncology at the Mayo Clinic in Rochester, Minn. Choctaw and Cherokee, she is one of only two American Indian oncologists in the United States.

"Cancer used to be thought of as uncommon among American Indians, but when I was affiliated with the Indians Into Medicine program at the University of North Dakota in Bismarck several years ago, my sense was that we were seeing a lot of cancer," Kauer said. "I worked on cancer control with Indian Health Service in Aberdeen to clean up the data and, we discovered that there indeed was a lot more cancer among our people than was previously reported."

Kauer found several reasons for the deceptively low figures. "A lot of Indian women who have breast cancer didn't get biopsied. They were staying home and dying. Without a biopsy, the deaths weren't reported in cancer statistics."

An additional factor in under reporting is that many American Indians who die off the reservation are listed as "white" on their death certificates. "In North Dakota there is a joke - you're born Indian and you die white," Kauer said. "That happens a lot in the Great Plains and in Oklahoma. The Southwest is better."

Dr. Otis Brawley, assistant director of the National Cancer Institute, said another reason why cancer rates appear low among American Indian people is that many die from what statisticians call "competing causes of death."

"Other causes of death, such as accidents, alcoholism and diabetes, prevent many American Indians from living long enough to develop cancer," Brawley said. "The average life span of an American Indian male is his mid-50s. The median age of someone who dies from prostate cancer is 71. Only 15 percent of prostate cancers are diagnosed in someone younger than 65."

This means rates of prostate cancer in American Indians could appear low for Indian men, even though their risk, if they live past age 65, is the same or greater than that of non-Indian men. "American Indians need to avoid the same cancer factors, like smoking and alcohol, as other people do and have cancer screening," Dr. Brawley said. "If you look at cervical cancer that mainly occurs in the 30s and 40s, a greater percentage of American Indian women than white women, die from it."

Although stepped-up cancer screening efforts, such as those instituted by the Indian Health Service, will help, other issues need to be squarely addressed Brawley said.

"There are subtle issues at work for minority health care. We looked at research on drug therapy. If a drug works a certain percent of the time for white people, it will work the same percentage of the time for minority people. What we have learned is that anybody who is poor or lower middle class in this country isn't going to get that new technology," he said

"We have terrific data about breast cancer survival rates for black women who are in the military, married to men in the military or are retirees. These women have the same mortality, or even lower, than the population in general, even though breast cancer mortality rates are much higher for black women who don't have access to military hospitals. This clearly shows that access to care is a critical factor."

Brawley said in the past the institute did not do as much work with minority populations as was needed. "Two years ago we began funding networks to explore cultural issues and to find ways of effectively passing information about cancer to minority populations. The biology is not different, but cultural sensitivities are."

"We're not looking at people's behavior per se, but at how information is taken and how it is accepted. We're looking at ways of conveying information so that people will not be so upset that they reject it or not pay attention to it. We need to know how to talk to people and how to do the best rendering of care."

The institute's recently announced strategic plan to reduce health disparities recognizes that certain racial and ethnic communities carry an unequal burden of cancer and sets forth a program to enhance research, education and training to remedy the problem. "We examine how to reach people through community centers, libraries and local tribal governments," Brawley said.

The NCI's American Indian/Alaska Native Initiative on Cancer Leadership, for which Kauer serves as spokeswoman, is a specific five-year project that covers health education, community groups, students and policy. It grew from an informal network formed by the NCI 10 years ago.

"We want to build support systems for disseminating cancer information and involve Indians in research trials when they want to be. We're looking at how people access health information and looking at ways to increase the number of cancer researchers who are American Indian."

One of the specific goals of the initiative is to educate the community and to strengthen ties between health care professionals and community members. "We're having meetings and discussions and plan to take that information back to the NCI," she said. "Working with Indian people, we can't come from the top down."

Both Kauer and Brawley expect cancer to become an increasing problem in Indian country.

"Cancer is much more common that it used to be," Kauer said. "We need to change the next generation and make sure American Indians have more access to advances in treatment than before."

One initiative which holds promise is PRODD, which stands for pilot research to overcome the digital divide between those with access to the Internet and those without. Its goal is to develop and demonstrate innovative ways to deliver information.

Two Internet sites also provide information: Native C.I.R.C.L.E (Cancer Information Resource Center and Learning Exchange) http:www.mayo.edu/nativecircle and LaPlaza health pages http://www.laplaza.org.

Brawley said that, "As things improve for American Indians and people live longer, cancer will become more of an issue. That's a sick statement. It is the worst kind of optimism, but it is the truth."

In the meantime, Kauer said focusing on prevention and access to quality health care delivery are critical. "It doesn't matter that cancer is less common among American Indians, not if you have cancer. If you get it, you don't want to die."