LILLIAN TOM-ORME: I'm wearing my red shawl today, also, along with my red dress. I hope you can see my shawl. I'd like you to see my shawl more than my red dress. Okay. Thank you for that introduction. I hope I didn't each to much so I can breathe up here. The theme for this panel is "What You Don't Know Can Kill You." If I use that theme for American-Indian Alaska Native populations, I get run out of the room because that sounds very frightening, very scary. And so I added, "Or, There are Dangerous Obstacles on Your Journey," because as an American-Indian Alaska Native people, we are always talking in terms of being on a journey. Life is a journey. And so there are all these things that come up in our way many times, and we talk about how we need to deal with these things, and which reminds me, when we read anthropological studies—and a lot of them were out on the Navajo reservations, which is where I'm from. And one time, I picked up this book and was reading it, and it came out and said, "The world view of Navajo people is that life is dangerous." And because I think a lot of times, you know, just thinking about it, and then I thought, "What does that mean," you know? How did these White anthropologists come up with this statement that the Navajos see the world as being very dangerous? And so I thought back, you know, what have I been taught? And I've been taught some very good things, but the word that always came up was "You don't do that," and the Navajo word is "Batsit," you know, which means, "That is dangerous. You don't do that," but you should do these other things.

So the anthropologists didn't pick up on "But you should do these other things," so life is dangerous. Anyway, and certainly in this day and age, diabetes is a huge problem to American Indiana Alaska Native people; and whenever we're at a conference with native populations, we always say every single one of us is affected by diabetes. We may not have it, but we have it in our family. And if we don't have family members with diabetes, then we have relatives, we have neighbors, we have Comanche members, we have friends with diabetes. So in that sense, life is dangerous when we have the problem of diabetes. It affects about, or I wrote down, at least 18 million people in this country, and you know, sometimes you will hear about 20 million people with diabetes. And up to about half the people with diabetes don't know that they have it. So and most of the diabetes we see are the Type II diabetes, and so, you know, certainly, that is the type that, you know, doesn't come up and say, "Hello," you know, "you've got diabetes in your system." It was a huge problem early with American Indian people when we started talking about Type II diabetes, and they would say, "Well, if it's so dangerous, how come I didn't know that I had it for the last 10 or 15 years?" Because what we were finding was when they were finally being diagnosed, when they were finally accessing a healthcare facility, they have had it for four or 10, 15 years, and what they were coming in with are complications of diabetes.

So, you know, we had to go back and try to work with people so that they understand that this type of diabetes doesn't just pop up one day and say, you know, "Here I am." And depending on the different populations you look at, it's the fifth deadliest disease in the country. And right now, we're finally beginning to talk about pre-diabetes. You know that the American Diabetes Association brought down their numbers, and this is to try to find those people with pre-diabetes who have glucose intolerance and the metabolic syndrome and, you know, this sort of thing. So we're finally beginning to talk about that sort of thing, and but, you know, if you are an ethnic person, your risk goes up. And if you're a woman and ethnic, you know, your risk goes up some more. So and a lot of times when we talk about Type II Diabetes in American Indiana Alaska Native populations—and I'm going to be mentioning them more and more in my presentation because that's the population I'm coming from, and then in your workshops, I think you'll, you know, kind of focus in on other populations. And the other reason why I'm doing this is because whenever we hear speakers, especially people at the federal level, NIH, CDC, you know, you have figures for White, for Black, maybe Hispanic, and other.

So American Indian Alaska Native people are in that "other." Native Hawaiian, specific islanders are in that "other." And sometimes, we mention Asian Pacific Islanders; "API," we call them. And I know that my Native Pacific Islander sisters, Native Hawaiian sisters don't like that, and they say, "Please separate us." So we have figures for the populations known as Native Hawaiians. For American Indian Alaska Natives, we want to do something about those numbers. Give us those numbers. So that's where I'm coming from. And often, when we talk about Type II Diabetes, the people with the highest rate in the world are located in the Southwest, and which is really, really sad, I think. I don't know if there are any people from here who are from that population, but we have also learned so much about Type II Diabetes from this particular Indian tribe, the Okemos Odem people, sometimes known as the Hila River Pimas. And several years ago, I decided that, you know, we really need to recognize these people because we have learned a lot. Almost everything we knew at that point about Type II Diabetes came from studies that were done by the NIDDK, who moved to Phoenix, started a field center there, and brought in these people into their labs, you know, and then finally—or later, they went to the communities. But we were able to recognize them because they have contributed so much to our knowledge base being research, you know, subjects, guinea pigs. And I say guinea pigs because that's how American Indiana Alaska Native people see us a lot of times when we come out into the communities to do research. But you've heard a lot of these things that many of our community members may not know. You know, what is happening when you have diabetes?

In much of the work that I do in the communities, when I worked within the public health system through the state of Utah and now as a community-based researcher, you know, people continue to ask me. These are the younger people, "What is diabetes? If I'm told that I have diabetes, will I feel it? How come when I go into the clinic on diabetes day, I'm told to undress and the doctor comes in and checks my feet? Why are they doing that if diabetes is someplace else? Why are they checking my feet? Why are they checking my eyes? I thought it was somewhere here in the middle, you know." So people still don't know, which means that, you know, we're not really doing a good job out there. When we're talking about health disparity issues, there are lots and lots of issues, you know, and we tend to talk more about the diseases, the disease process. And we list all these things where there are disparate rates and so forth, but I think we need to begin to look more carefully at the healthcare differences out there within the Indian health service. You know, a lot of times when I speak to people, there is this understanding out there that if you are a native person, an Indian person, your health is paid for or taken care of by the Indian Health Service, and that's not true.

What I understand is the Indian Health Service only takes care of about half of the Indian population in this country, and the Indian Health Service is not funded at an adequate level to take care of even that half of native populations who are in their statistics. So we need to begin to look at these healthcare differences among our population because that's what adds to the disparities in those rates that you see in terms of diabetes, cardiovascular disease, obesity, and so forth. Nutrition. When I work on reservations and with urban-based populations and, you know, it's really easy for us to say, "You need to improve your eating habits. You need to take a look at the foods you're eating, you know, how much, the variety of foods." But we don't pay attention to how much these things cost when—and then where people shop, if they have access to transportation if they're in an urban area. You know, can they afford these things? In terms of environmental influences, where are these people living? And, you know, this applies to all the various ethnic populations, just not, you know, American Indiana Alaska Native people.

Rural, somebody this morning said, you know, you don't know rural people unless you've been out there, and that is so true. And then, there are also frontier areas. I think the farther west you go, you know, you will see frontier areas out there. But even in urban settings with—for me, the urban population that I work with are usually, you know, in poorer areas where maybe crime rates are higher. And so I'm sure it's the same in some of these East Coast metropolitan areas. Poverty is a huge issue for ethnic populations. I'm currently doing a community-based cohort, involved in a cohort study on the Navajo reservation, and it's part of a national study where we have a study in Alaska, three sites, and the northern plains. And it's really amazing to see, you know, the level of poverty, you know, out there. And yet, you know, every day when you listen to the TV and the radio stations, you know, people talking about third world countries, you know, we have them here in this country. So you don't need to go very far, you know. Just take a trip out there to a rural area or, you know, into inner cities and, you know, people are living in third world conditions. So we really need to pay attention to that.

Education is also a big issue when we're talking about health disparities when we see high rates of diabetes. And I like I said, what people don't understand, what is diabetes? You know, "How come I don't feel it? If it's somewhere, you know, in my body, how come they're looking at my feet?" And so, you know, we may be putting out all these brochures and things like that, but people may not understand that. And then, you know, some don't read and so forth. There are ways to try to get some of these messages out. Cultural beliefs and practices. Years ago, I did a study with middle-age Navajo people, and I did interviews in Navajo so they could—we could understand each other. And I asked them, "What is the word, or how do you describe diabetes?" And the literal translation that came back to me was "Sugar is killing me," and because they are told that "Your sugar is high" in the clinic. And so over time, then, you know, they have problems with their eyesight. They have problems, you know, feeling their toes and legs and so forth. So then they begin to think, "Well, maybe, you know, it is true. Maybe I do have sugar that's bothering all these things," and of course, they come down with heart disease. And so "Sugar is killing me" is what they would say.

But then there are other people who are told they have diabetes, and so they would be so careful that they don't add any sugar to their coffee, their tea, and all these things. And they say, "Well, yeah. I am watching what I'm eating. I don't eat sugar anymore," but you know, it goes beyond that. We know how much you're eating, and among Indian people, we're always celebrating something. I'm sure it's the same in other ethnic communities. There are so many celebrations, and we love to eat, you know. We get together with family, and that's what we're doing here, you know. We're family, and we're eating. So we eat. We eat and eat and eat. And I used to tell my mother that, you know, every time I came home. And, you know, there's another place to go eat.

My mother is gone now. She left about two years ago. She had diabetes. She had heart disease. And so I would joke with her about these kinds of things. "Are we eating again?"  You know, we're invited to so-and-so's graduation or wedding, or in Navajo, we celebrate the baby's first laugh. So we go and we eat. We celebrate graduation from Head Start. We celebrate, you know, graduation from whatever, you know, passing our driver's license test, or, you know. And for our population and, you know, we observe the rites of passage. And so when a young lady about age 12, 13, 14 becomes a young woman, we have a four-day celebration. It's four days of eating. But of course, you know, our traditional teaching is that we're supposed to eat good food, which is corn-based food that takes maybe all day to prepare. And of course, these days, you know, we do a lot of substituting. You know, we go to Wal-mart. The Super Wal-mart places are all over the reservations. So we run there and get, you know, all these foods. We go to the Kentucky Fried Chicken, and, you know, we have that for all of our traditional meals now. So anyway, cultural practices, beliefs are very important. Learn from this and see how people have modified these over the years. And of course, you know, when we modify, we're not making very healthy choices.

You know, the traditional way of doing things have been very healthy, and we just don't take that time anymore. The provider supply is a huge issue. I'm sure that, you know, those of you coming from your populations realize that you just don't have enough of your own people working in, you know, as public health professionals, as clinicians, as researchers. We have the same problem in our native populations. We just don't have enough. And a lot of times, you know, we send people off to school; they never come back because life is easier out back. It's very difficult. It's very challenging to work, you know, with your own people. You know, I find that as a researcher, when I first went back to my home community, to the reservation, you know, they don't like researchers out there. So here I am, you know, saying, "I'm a researcher." Well, you know, what do they do with me? I'm one of them. I speak the language. They know my parents, and that helps. You know, a lot of times, you know, I'm so-and-so's daughter and granddaughter. "Yeah, but you're a researcher." So it's very difficult.

This past year has been the most difficult for me because we just started this huge study, and after about three years of preparation, I mean I went to every Comanche, Comanche meetings that took six, seven eight hours, you know, sitting through these discussions and sitting through health board meetings, you know, that sort of thing. It took a while, and so we finally started it. But it still has been a very rough year. The ethnic health professionals we talked about. But in terms of women, you know, someone this morning said, "We do everything," you know, "People look to us for everything." You know, we are—I am a mother. I have a 22-year-old daughter, and so I think somewhere along the way, I'm going to become a grandma. And I don't know; I can't deal with that quite yet. But you know, I'm a sister. I'm a daughter. My mother is gone, I said; but you know, I have her sisters, who are my mothers now. I have three mothers left. So I'm a daughter, and then when—with us, when we introduce ourselves, which I didn't do appropriately early on, you know, we will recognize that, you know, some of us belong to the same clan. So when I say I'm Tohletlini, is there a Tohletlini here in this room? Probably not. So that person would be my sister or my mother or my grandmother. I have a woman who is a colleague of mine who is my same age. Well, you know, we're related by clan, so she calls me her mother. And I have to, you know, think about it. And so when I see her, I always say, "My daughter" to her, she'd say. So there are those types of relationships. And as we go through life, you know, we have all these challenges.

 You know, remember, life is dangerous. So when you're a preteen, you know, there are all these issues that come up: eating disorders, smoking, your image, school, and peer pressure. I'm sure there are other things. But each stage in our life, we're met with these challenges. During our reproductive age, you know, we have to deal with pregnancy and all the issues that come with that. Are we healthy before we even begin this pregnancy? And other things, especially with diabetes, you know, yeast infections, there are employment issues, marital stress, obesity. Onset of complications, you know, are beginning to take place at this age. Your middle adult years, if you have diabetes, there is progression of diabetes and other diseases. You begin to spend a little more time in the hospital perhaps, more doctor's visits. Education and job issues are still there. Of course, mental health, you know, this is one of the things that we begin to deal more with, you know, almost on a daily basis, I think; one reason, because you're now a grandma or a mother, and, you know, you've got change. You've got grandkids and so forth. And then, senior years, you know, the complications are continuing. Now, you've got more medical bills.

The quality of life is, you know, important during this time. You're looking to home healthcare, economics, physical inactivity, and then death, you know. And I won't tell you how old I am, but I'm beginning to look in the—when I read the paper, I'm beginning to look in the obituary every time I pick up the paper because, you know, I'm not that old, but I have friends who are dying. I had a friend, one of our research partners just—I was out of town not too long ago, and he was found dead from a heart attack sitting at his desk in his office at the College of Health. So you know, it is really frightening when you begin to see your closest friends, you know, listed in these obituaries. And maybe I shouldn't look there anymore, but so these are real life issues. One thing, when I was looking at this slide, I didn't list children. You know, small children, babies who were born from gestational, you know, diabetes pregnancies. You know, we start as women, ethnic women. We begin this journey with all these obstacles. We need to know, you know, about these things. What has been my history?

Just to give you some idea of the availability of providers from the various populations. This is a commonwealth fund study that came up with these figures; and I thought I added the American Indiana Alaska Native, which is really, really small, very few providers. And it really looks dismal. So we just don't have the ethnic providers out there. One of the challenges that we have, you know, when we get diabetes in the various ethnic populations, and especially for American Indian women, is the use of tobacco. Tobacco and diabetes really don't mix, and it usually means early death. A friend of mine from the University of Minnesota has done some studies, Dr. Felice Yoharge. And I should have added her to this. But she found that American Indian women have the highest tobacco use, and Alaska and northern plains have the highest rates. In Alaska—and this goes back to the cultural practices, okay—in Alaska, what happens is young babies, and I can't remember this mixture that Native people use in Alaska, but it has all the bad stuff, you know, that's contained in tobacco. And it's not traditional tobacco, but what they do is they take tobacco and put it on teething babies' gums. And so by the age of five, these kids are addicted. And so, you know, I understand from a friend of mine who's a researcher there, Dr. Ann Leneer, who does a lot of work in cancer, that kids are addicted at such a young age, and they're using smokeless and smoking tobacco. So we really need to be aware of working with that, and also the media. Cigarettes are available one out of five—or one/fifth of cost on the internet, and my friend Felice Najods found that in her work. And many of these advertising people on the internet are using American Indian logos and giving American Indian names to these tobacco packages.

Just quickly, you know, looking at some sources that are out there, having served on this advisory committee out of Dr. John Ruffin's office, we have been working with the NIH in asking the various institutes to come up with their own strategic plan on health disparities. So if there's someone out there, one of the institutes who does not have a plan, you know, please alert them and work with them and volunteer to work on their advisory committee because they should have it out there. And in terms of prevention, we know that we can prevent diabetes. For those who have glucose intolerance, who have pre-diabetes, we know that we can prevent that. There's been a national study that included various minority populations, ethnic minority populations. And, you know, we have proven that we can prevent diabetes, so this slide is just to remind us of that. Use the resources that are out there. A lot of times, you can go into these websites. You may have access, but some of the people you're working with may not. But you can get, you know, some information. For instance, my colleague, Andrea, she was head of the Hispanic/Latino program called DAR out of the American Diabetes program, and then the African-American program was the Diabetes Sunday. And one of her speakers talked about, you know, how you work through the churches, and that's what we were able to do.

There are recipes. You can take a risk test, do advocacy. CDC has some wonderful information. In fact, there was a study that they've posted, or that was done a couple of years ago, looking at women's health issues, at diabetes and some of the other chronic conditions. And these are not quite the slides that I had planned. There were several others that are listed here. One is a Harvard, very interactive website where you can go in and do a risk test. And it'll ask you, you know, your ethnic background and various things like that and give you some tips, actually, on how to, you know, improve some of these things. I do want to mention this. I know that they're telling me my time is out. But okay, on our journey, we really need—as healthcare professionals, we need to enter, you know, nontraditional territory, okay. We talked about schools, mentioned just a little bit of that. You know, a lot of times you talk to public schools, and they're saying, "Oh, we cannot add one more thing." But like the speakers said, you know, how are kids going to learn their reading, writing, arithmetic, and this sort of thing if they're not well? And so, you know, schools do have a role, and we're trying to introduce this, you know, on Indian reservations. Not too long ago, I heard one mother say, "Why are they sending," a grandmother, "sending home this note to us saying that we need to take my granddaughter for a walk every afternoon after she gets back from school?" You know, "They shouldn't be telling me that. Their concern should just be reading, writing, and arithmetic, and going for a walk is not part of it." So we had a little discussion, you know, about this.

Churches, women's support groups, family-centered activity, I mean, you know, when we talk about feasting and eating and eating and eating, these are places where I think we need to, you know, come in. I have a sister of mine who's a public health scientist at the University of New Mexico, and so every time we have a big family gathering, we talk by internet. And we say, "Okay, there's another feast out there. Now, how do we approach this?" because we both work in cancer and diabetes and, you know, this sort of thing. And the rates are just, you know, phenomenal, and we're very concerned about our relatives. And so we try to take education to them, and so we usually strategize on that. Fast food counters, you know, that's where we really need. On the reservations, Shiprock, New Mexico is the closest little town where I'm from. I don't know how many fast food places there are, but that's all there is. And so it is just amazing how much McDonalds is there, Burger King is there. And so I'm really-

PAT WARE: He's going to talk about nutrition, so.

LILLIAN TOM-ORME: Okay. So anyway, and then athletic sports clubs, we need to be there, and we need to be in, you know, culturally appropriate. So I put down healing circles, talking circles, and these are some ways. This is coming from the native traditions, but I'm sure you have your own traditions, okay. We need to pass on these traditions to our children, to our grandchildren. And so in our journey, remember this. And I thought, you know, I would end with a positive rather than what you don't know can kill you. You know, we need to know these things so that our journey is safe because, you know, life is dangerous.