LINDA BURHANSSTIPANOV: Thank you very much, and thank you for inviting me here to do this presentation. I am the one moving around, by the way. I don't go up on podiums. You know, I'm a survivor. My ancestors are survivors of Trail of the Tears, and so I think it's always good to keep on the move. I've got two objectives for this brief session, and you will find that you have information that is inside your notebook on this session. I am only going to jump over a whole bunch of stuff in there, and basically, that handout is for you to refer to later on. And I'm going to end this session. I've got a little alarm set for me over there, so when you hear the alarm, it means that I've got time to do a short game with you. I'm Cherokee nation. I'm fast-talking, and you'll find that most of our panel today is going to be fast-talking. We're also all from the Intercultural Cancer Council, and so we're used to kind of jumping around quite a bit. And we have to be to be a success. Very, very briefly, and this information is your handout, but I just want to give you a little bit of an idea of what we're talking about in cancer in Indian country because in cancer in Indian country—and these data are from the Indian Health Service, which basically is the only data that we can really use. We can't use the other federal databases.

We have five geographic areas that we refer to when we look at data in Indian country, and I want you to look briefly at breast. When you look at breast cancer in American Indians, you typically are looking at data from the Southwest. Where are the Southwest on this graph? And this is why we don't get a lot of monies allocated for cancer in Indian country. But even in the Southwest, if you look at what's happening with breast cancer, you will see it as increasing every year among Navajo women, among Hopi women, among Apache women, among any of the Pueblo tribes. So even though it is very low, it is increasing. But our data do not reflect that. I'm just going to show you one other one. This is for cervical cancer. Again, look at what we have throughout the northern plains of the country. I mean we absolutely have abominable rates for this disease.

I'm going to skip through these others. They are in your handout, so you can kind of get an idea of where it is. And basically, this is also in your handout. It's "Who Develops Cancer?" Anybody can develop cancer. It's in all racial groups. Cancer knows no prejudice. Cancer knows no prejudice. Any of us can get it. As we get older, we're more at risk for cancer than we were when we get younger; but even young people can get it. When you look at basically what makes something a risk factor, and that's what a lot of what this conference is, on how do you prevent cancer, how do you prevent cardiovascular disease, how do you prevent obesity, and so on. We are looking at lifestyle, environment, and heredity. These are risk factors. Which one is the most significant for cancer? Lifestyle. Lifestyle, not heredity. Lifestyle, lifestyle, big time. So what we do. And you look at what are the preventive behaviors that help prevent cancer? What do you think is a preventive behavior?

UNIDENTIFIED SPEAKER: No smoking.

LINDA BURHANSSTIPANOV:  Not smoking, good diet. What else?

UNIDENTIFIED SPEAKER: (Inaudible)

LINDA BURHANSSTIPANOV:  Regular checkups. That's for early detection. What else?

UNIDENTIFIED SPEAKER: Exercise.

LINDA BURHANSSTIPANOV:  Exercise. What percentage of diseases do you think—what percentage of cancer diseases, because it's over 100 disease—are prevented by regular exercise?

UNIDENTIFIED SPEAKER: (Inaudible)

LINDA BURHANSSTIPANOV:  Ten percent? Twenty percent? About 30 percent. About 30 percent by daily exercise. Now, what are the behaviors that you need to do to prevent cardiovascular disease?

UNIDENTIFIED SPEAKER: Exercise.

LINDA BURHANSSTIPANOV:  Exercise. What else?

UNIDENTIFIED SPEAKER: Diet.

LINDA BURHANSSTIPANOV:  Diet. What else?

UNIDENTIFIED SPEAKER: No smoking.

LINDA BURHANSSTIPANOV:  Not smoking. What else?

UNIDENTIFIED SPEAKER: (Inaudible).

LINDA BURHANSSTIPANOV:  All right, but yeah. But you see that the lifestyle changes are exactly the same. Now, when we work in my community and we work in almost any other medically underserved population, one of the things that our community gets very, very upset about is they say, "Look, I don't want to know just to eat this vegetable or that vegetable to prevent diabetes. I want to know how do I behave to be a well woman? What do I need to do to see my children and my grandchildren graduate? Okay, I don't want something that's just for one disease. It's overall health. What do I need to do spiritually to be a strong woman, you know? How do I walk the path of wellness and good being, and how do I become a model to my children, my godchildren, my little nieces, my nephews?" That's what most of our communities are interested in. We don't want this disease-specific. The very end of the handout talks about what you need to do to be a well woman, and so I'm not going to do that, go through this part. I am going to emphasize this one brief thing.

One of the things that makes something a risk factor is frequency. How often are you actually exposed to whatever the risk factor may be? Another one is duration. How long are you exposed to something? Do you do it once? Do you do it many times? With some diseases, such as what you heard with the panel earlier today, one exposure is enough. With tobacco use, you quit smoking tobacco today, and in our community, if you only reserve it for ceremonial use—ceremonial tobacco use I'm not worried about. I'm not worried about it. You know why? It doesn't have frequency, it doesn't have duration, and it doesn't have the intensity that it does when somebody is somebody is smoking a cigarette throughout the day. Habitual tobacco use is the problem. You quit smoking today, you're looking at there's positive health benefits within a year. There's even more benefits within two years. Your risks for cancer drop almost to normal within 10 years. You know, I mean it's phenomenal benefits, and people say, "Oh, well, it's too late for me to stop." Get real. Get real. Ten years is 10 years. You know, you can do this. You can make the extra changes. And the intensity is just how strong with the dosage, and those are kind of important. These are common: age, having previous diagnosis of cancer, family history, having gender, meaning that some types of cancer—you know, we get women.

We do a lot of community outreach programs, and the women say, "You know, why is it you're not inviting us to come in for a prostate screening, hmm?" I say, "Grandmother, you don't have a prostate." Hormonally, there's different things that have to do, cultural life patterns or things that have to do with risk factors. As an example, when we look at Alaska Native women, we have a totally different colon cancer death rate. I'm not talking incidence; I'm talking death rate from colon cancer for Alaska native women. It differs if you are Aleuke. It differs if you are Apabaskan Alaska Native and if you are Eskimo Alaska Native. So it totally changes for the different groups. Now, we don't see a genetic difference in the Alaska Native women. What we do see are lifestyle changes, what they're allowed to eat, what they do with their daily life, and so on. And these are some other risk factors. Again, this is in your handout, so I'm going to whip right through it. We have done a study.

One of the studies she referred to was comparing a face-to-face navigator model. What's a navigator? Lay help outreach. The only thing that works. Yeah, navigators are phenomenally effective. Well, we knew a face-to-face navigator model worked, and we wanted to actually see, can we make a navigator model effective through the telephone? And so that's what this first study was about. We found that less than 16 percent of native women were being re-screened for breast cancer, and we said, you know, "What can we do to increase the re-screening, and let's see what happens." So some of the eligibility is that they needed to be at least 24 months since they had had their last mammogram. They had to be over 40. They lived in the greater Denver metropolitan area, and they had to at least have had one mammogram sometime in their life. This was basically the group design. It was a comparison, and we had a total observation group that was using the Colorado Mammography Advocacy Project, which looked at mammograms and re-screening and so on. In a nutshell, what happened with this is we tried to use survey information. We tailored it to the woman because people like to be personalized, and we do a lot of stories in our communities. And I know several of you also use stories in your communities very effectively. The bottom line is regardless of what your personal history is, you need to make certain you're taking part in annual screening because we do not know how to prevent breast cancer.

We do not know how to prevent breast cancer. Is a mammography prevention? No, it is early detection. We still need better tests, don't we? Yeah, and we're working on that, but we're not there yet. But so our bottom line is we've got to get in as early as we can. So this is our tailored piece, and it's from NAWWA. Native American Women's Wellness through Awareness is what NAWWA stands for. And it basically identify who their native sister is. Native sister is what we call for our navigators. Our navigators are native sisters, and now we're starting to get brothers, and there are native brothers. In the inside, it kind of takes down and says, "Okay, you're from the northern plains. Northern plains, your risk for breast cancer is much higher, so it's exceptionally important that you take part in annual re-screening," and that's kind of what happened with the C-map. This is the findings. Again, this is in your handout. I do want you to note that what we had as we had on the pretest, look at the telephone pretest, 29. Telephone posttest, 41 percent. Navigator model can work over the phone. We compared the telephone versus face-to-face, and if you look at the P-value, they were both effective, so that was not significant. How effective was it compared to the database that was our observation group: .01. For those of you who aren't used to looking at statistics, if you get anything that's like a .05, you're cooking. And we are rocking. We're hot. So this worked. So this became our model, then, for going to the next project, and it basically—now we're working with poor White women, Latino women, and urban American Indian women in another project that we've just started.

One other point I want to point out on this, and that is if you look at this last item here, it says, "Telephone intervention was not more cost effective." Everyone thinks that if you have a telephone, you're going to save gobs of money. Why do you think it didn't work, because it didn't? Numbers are no good. You know how quickly our numbers changed in our project? Within 24 months, half of the numbers were incorrect. And you're now like this, "Uh-huh." Yeah, I see a lot of nods. Yeah, it's the same thing in your community. Telephone intervention was not effective. Our native sisters ended up going to different events and kind of saying, "Oh, do you ever see Marylou anymore?" And they say, "Oh, yeah, you know, Marylou, she moved in with her sister." And that's like, "Oh, yeah. Well is that Martha, her sister Martha, or is that her sister Ellen?" "Oh, Martha, Martha." "Okay, fine." And then, she'd track her down. So the telephone intervention cost just as much money to do because our phone numbers just stink, and that's because we live in poverty. When we ask people, "Do you have a telephone," we say, "Yeah." You can even say, "How many?" "I got three." Do they work? "Sometimes." Because when money gets short, you know, and I'll tell you, this time of the year is when all of our numbers are disconnected because we're kind of saying, "Hey, you know, it's time to buy shoes for my children or for my grandchildren. I can go without phone service for a month because that will pay for a pair of shoes," you know. So that's the first thing that goes. So a lot of times when you ask these surveys, quantitative data alone isn't enough to take it to the next level for you to really understand what's happening in our communities. This next one is not in your handout, "Get On the Path to Health." Now, this one, I don't know what was wrong with me, why I left it out of your handout. My website is on here. What I want you to know is "Get On the Path to Health" is a collection of early detection and prevention educational modules that will be on our website.

Breast is on our website now. Breast has been for a year and three months. Cervix, colon, lung, and prostate for our men will be on our website, available for free download by the end of September. Some of them, I think cervix will be up by the end of August. About 75 percent of what is in this curriculum is applicable to anybody of any racial group. Twenty-five percent is very specific to our cultures, but you are very welcome to take what we have prepared for this and then modify it so you don't feel like you have to start from scratch. You can take anything we've got and tweak it for your own community because nothing is generalizable to everybody, nothing. Nothing, never, never, never. Church interventions suck eggs in my community. I'm sorry. They work wonderful in certain other communities, but for different federal agencies—I won't mention which one—to say, "Everybody should do a church intervention," get a life. You come out to my community and you do it, and you watch our religious leaders get upset and say, "Not only are we not going to promote it, we're going to tell everyone to not support your program because this is inappropriate.

God and the spirit are separate from what's going on." So you cannot always take an intervention that's incredibly successful someplace else and drop it into another community. You must always adapt. You must always modify. And who tells you how to modify? The community. The community knows what's going on. They know how to do things in a good way and in the right spirit and so that it will affect the most people. And they'll tell if you can do a church intervention, or they'll tell you if you should be doing it at Wal-mart. You know, they'll tell you what needs to go on because they know. So to get on the path is not in your handout. Basically, the five modules that are up go through the introduction, and we always include a native survivors story about dealing with whatever that cancer site happens to be. This is our healthy eating. We're putting together a local notebook. One of the key things that's in here, the be patient, it may take one or two years to get your program going is incredibly important.

To get a community-driven intervention rolling in the community, do you think it usually takes two years? How long? Four or five years, closer to five years. Now, what happens if you have a one-year grant? Are you going to be able to show success after one year? Lord, God, no. And so if you are the funder, you need to make certain you get your feet back on the ground and realize these are medically underserved women, all right. They need more time to be able to show success for whatever their program happens to be. I'm going to jump through. All of this is in your handout. I'm going to a little activity. This is just kind of showing you some of the people who have taken part in our different wellness events, and do you see the little boy that's up here? He's up near the fire truck. This was at our annual wellness event.

Now, I want you to set things down for a minute. I like to do something to get your movement going. You started this morning with a good exercise activity, and this is Coyote and Arrow. And I'm going to give you a little true/false statement. Some things I've jumped through, some things I haven't; but they've been covered by other speakers. I've heard some of these things brought up. Coyote is a trickster in our community, and what you do with coyote is you kind of put, like, your front paws down and you kind of wiggle your back like you're getting ready to pounce. So you're going to stand up to do this. Let's all stand up and let's practice coyote. This will take me two minutes. Okay. Here's coyote. So if it's a false statement, you're going to be like a little coyote, a little trickster ready to pounce, all right? Good coyote. Good job. Okay, now if it's the truth, it's the arrow of truth. Okay, so pull back your bow. Arrow of truth. Good job. Good job. First statement is breast cancer deaths are more common among northern plains tribes in comparison to all other tribal nations of the U.S. What's the answer? Show me that arrow. All right, good job.

Okay, southwestern tribal women have more cervical cancer deaths in comparison with all other tribal regions in the U.S. What do you think it is? Coyote. Who has the most? Who has the most? Northern plains. Northern plains. Cancer is primarily a disease of older people. True. True. All of us, every year that we celebrate a birthday means that we need to be extra diligent to be healthy again. Every year, we have to be healthy again. How about the three conditions that increase a behavior's likelihood of being a greater risk for cancer are one, frequency; two, duration; and three, intensity? Arrow, good job. Good job. The navigator telephone problem was cost effective in comparison with the face-to-face. Good coyote. Good coyote. On average, about half of the phone numbers for urban American Indian change within two years. Arrow, good, good. And even low-risk programs like the NAWWA walking program takes one to two years to gain trust and acceptance from the community. True, true. And native survivor support groups, which I didn't tell you at all, run the same as non-native support groups. What do you think it might be?

UNIDENTIFIED SPEAKER: False.

LINDA BURHANSSTIPANOV:  You're good. Good coyote. I think this is the last one. Community members want health programs that address multiple diseases rather than one disease-specific program. True. Thank you very much.