Interviewee

Dr Judith Kaur

Article

Occasional Lecture Series: Dr Judith Kaur, Mayo Clinic, Minnesota, USA

Summary

This special long play installment of the occasional lecture series looks at Indigenous health issues in North America from the unique perspective of Dr Judith Kaur, a Choktoi Cherokee, and one of only two American-Indian medical oncologists in the USA. Dr Kaur is the medical director of the American Native Programs at the Mayo Clinic Comprehensive Cancer Centre, which is involved in outreach with American Indians and Indigenous Alaskans. Dr Kaur's research includes a special interest in women's cancer, especially cervical and breast cancer. She is associate professor of oncology in the Mayo Clinic College of Medicine. She is also the medical director of the Mayo Clinic Hospice and chair of the palliative care taskforce. THIS IS THE LAST PODCAST FOR 2007. WISHING YOU SEASONS GREETINGS AND A HAPPY NEW YEAR. WE WILL BE RETURNING FOR WEEKLY PODCASTS ON THE 18TH OF JANUARY 2008.

Transcript

Judith Kaur: As a medical oncologist, I love talking to people who are trying to make a difference in the burden of cancer in any population, and since I have a special interest and a special commitment to Native Americans and their health, to know of the work that you're trying to do to improve the plight of Indigenous people of Australia is very compatible with my view and my values, so I appreciate the opportunity to be here with you this evening.

I wanted to share with you some of the lessons that we've learned in working with American Indians and Native Alaskans across the United States and to give you a little bit of a bird's eye view of some of those community issues and ways to try to overcome some of the barriers that lead to poor outcomes from cancer and to share with you the hope for the future, which would be to skew things more towards the prevention side, rather than the late issues that often occur in cancer.

But as I was telling the group at noon, when you think of where we were twenty-five/thirty years ago, and where we are today in the world of cancer understanding and cancer treatment and the hope that for all patients there is always something that we can do to help them through the cancer experience. I think that it's so important to think in terms of a larger time-frame for accomplishing some of the things that all of us wish would happen tomorrow. But it is a building process and it is so important to garner the resources and to get the people who are committed to that cause. So I'm going to share with you a bit.

You might notice that my maiden name is Salmon, is here as well as my married name, Kaur, in honour of my husband Allen. It should come as no surprise that I would end up in cancer research and cancer treatment because the salmon is always swimming upstream. So it's quite appropriate and Judith for those of you who have some knowledge of biblical history know that Judith was a female warrior, and that's what I am.

So you might think that this is just a proud grandmother trying to display my first born grandchild, my great grandson Mason, holding him on the day that he was born, a wonderful event. And indeed that's true. I show him off whenever I can. But it's also again to emphasise that point that much of what we're doing today is to lay the foundation of what happens with the generation that comes after us. And as a traditional person, as a native person, I have a responsibility as a grandmother, not only to love the little one, which I do wholeheartedly, but to teach him and to provide a world that can be better for him. Each generation is to give a gift to the next, and my gift to this next generation is hopefully better health, especially more freedom from this scourge of cancer. Part of that gift is also to share the wisdom that comes from traditional teachings that will help him make choices that will be healthy and wise for his future as well.

So this is where I work, and I spend many, many hours. I was going to show you, I'm on the tenth floor in the corner and I see, I face Assisi Heights. Assisi Heights has the history of Mayo Clinic where the nuns would not give up on the Mayo doctors and convince them that they would build a hospital that the doctors would staff. And the issues back then, shortly after the civil war and the turn of the century, was that people didn't want to go to hospital because you went to hospital to die. And so the Mayo brothers had a wonderful reputation as physicians, were quite reluctant to say that they were going to be part of this hospital. But the nuns were insistent and it took a tornado to convince the Mayo brothers that the nuns meant business and that they would help them take care of the sick. So my office is probably right around there. I have a great view of Assisi Heights and it's a great inspiration for me.

So this is what Mayo clinic looks like today. This is the kind of weather that we are having back there, so whereas in Australia North is warm, and South is cooler, there North is North and cold and very Christmassy right now. So when we go back we'll be preparing for the holiday.

The other aspect of health care that I think is important for anyone who works in, whether it's cancer research or understanding health care systems, or health care policy or delivery, is that for Mayo we have what we call the three shields. As you may know, the Mayo clinic is noted for its patient care. The quality of the patient care experience there. And so the centre of our being is patient care and that is the major Mayo shield. But it is supported by two other shields which is education, on this side, and research, on this side. Because without education of future generations of doctors, without research to inform new treatments we cannot improve patient care. And so for those of you who are in research, we value and honour what that is, but it also means that there should be this transition from research to clinical care that makes a difference in the lives of people.

And as Pam and I were talking a little bit earlier, all too often for native populations, research is a four letter word where researchers come in, they collect their data, we call it helicopter research in the Indian country. The collect their data, they fly off, they write their papers, and nothing changes to improve the care of the people. And if Mayo stands for anything, it's that we don't do that kind of research. Our goal is to disseminate knowledge to people across the world and that's what the doctors, Mayo brothers, did. They went around the world and they learned from Germans about antisepsis, and they went down to South America, they learned from physicians there, and they invited people from across the world to come and learn what they were doing and it's that sharing of knowledge that moves us forward. And the same is true when we're looking at population health, and so my area of research is called population sciences. Where instead of in my one hat my role is to take care of the individual cancer patient in front of me, my other hat is to make sure that we can look at how health care delivery systems affect whole populations. What do we do in terms of policy, education, training, that will improve the next treatments available for other patients?

So let's talk about Native American health as a perspective of what's happening in community health with native people in our country. First of all in the United States, our Native American population is around three million. So in terms of minority groups, it's relatively small, and without a lot of political power because of that. So American Indians and Alaska Natives at the last census were approximately three million people. And I was interested to hear that within your Indigenous populations many of those populations that make up that three million are quite small and there are over 550 federally recognised tribes, or nations and within the US system, tribal nations that are federally recognised are sovereign nations. It is a nation to nations, government to government relationship with the US government based on treaties going back over 100 years. And exist primarily in 34 states with multiple languages and multiple religions. So some real similarities to the situations that you are looking at for your Indigenous populations. And as has happened with my generation, I'm a city Indian, having been born and raised in Chicago, I was born on the campus at University of Chicago, sixty-five percent of the population are located in urban areas or cities. And that poses its own problems in terms of reaching populations because, for example, within the city of Chicago, there are native areas of the city where there are native people, but it is inter-tribal, multi-tribal, and so it isn't a homogenous group. And in fact one of the things that we have to constantly remind policy makers and law makers and physicians across our country dealing with native populations, is that you cannot homogenise these populations. There are many differences and so you can't stereotype that all natives are like this, or all natives have this problem with cancer.

So looking at cancer-specificity in American Indians and Alaska Natives, and cancer is not the only health problem that they have. And it's also important to recognise that the chronic diseases, such as diabetes, heart disease and cancer, all came within the last two generations. Traditionally, those were relatively unheard of. And so, for tribal organisations, for families, for health care delivery structures, this is a new disease to deal with on a relative basis. And health care is very fragmented, so that in these areas where most native people live there are not specialists such as myself. To go to an oncologist they have to be referred. To be referred, they have to go through a bureaucracy in order to receive the care that they deserve. And so looking at ways to make the infrastructure meet the needs of the people was an important part of the research that I do as well. And what we found was that the national registry, called SEAR, which stands for surveillance, epidemiology and end results, which is a sampling of the US population, was very definitely under-counting Native people. And only included small numbers, usually as an asterix in the reports that meant that there were too smaller numbers for them to be able to calculate rates. So those of us who began to sound the alarm, like the canary in the mine, that 'wait a minute, you're messing up, there's a lot of cancer going on in those communities and you are not seeing it'. And so we clambered and clambered and collected data and talked and talked until we were blue in the face, until we finally hit a point where we are cleaning up that data and we have found that the rates are significantly higher then what had been reported. Now why is that important? These are government statistics, they go into a computer file somewhere, who cares? Well, it makes policy, it makes a difference in terms of access to screening, for example. If you don't think you have breast and cervical cancer why are you going to spend the money out on the reservations to screen those women? So you have to make the case for the need.

What we found was that racial mis-classification was very common. A good example, California, very large native populations, many of them sound like they're Hispanic. Why? Because the Spanish came in and used Native Americans as slaves and they gave them Spanish surnames and did not allow them to keep their traditional names. And so someone in the cancer registry just looking at a name might say, "oh, that's Hispanic, that's not Native". So in California, the racial mis-classification was 60 percent. So the availability of services to Native people in California was dramatically curtailed until it was made clear that their number s were all wrong. And so I really encourage you to look at your statistics and to try and keep them updated. To look at ways to make them accurate and to use those to inform policy and services.

Our program is called the Spirit of The Eagles. It's one of the three programs that we talked about and I'm going to tell you a little bit about some of the other aspects. You know, the Federal government calls my program the American Indian and Alaska Native Leadership Initiative on Cancer. Very fancy, right? Could I answer the phone that way? Could I go into a Native community and say "I'm the American Indian and Alaskan Native Leadership Initiative on Cancer person" no I could not.

So you have to have visibility, you have to have symbolism that people can recognise the program. And so I have an advisory board and actually before we had any money we had people who were just concerned interested, had certain skills. Some were medical people, some were epidemiologists, some were Natives, some were non-Natives, some were nurses, some were policy people. But all were concerned about trends that we thought we were seeing in cancer in Native people. So we had an informal, unfunded group. I'm here to tell you that sometimes that's the most powerful way to start any program. Is just get a core group of people who really, really, really want to work on the problem and then expand it as you're able. So we were the ones that were pushing for the data. We were the ones telling the stories of what was happening in the community. Until there came along an opportunity for funding from the National Cancer Institute, which is also subsidised by my employer, the Mayo Foundation. And indeed, no program is ever funded enough. You know, it's just a fact of life. So, if it weren't for the good will of Mayo Clinic, if it weren't for other supporters, and I'm going to share with you some of those supporters, even this Spirit of the Eagles money from the Federal Government would not have gone as far as we have been able to accomplish. But our advisory board decided that we wanted to have a broad program that would build infrastructure that would go from prevention to end-of-life care in its scope. And that to emphasise that to communities, we wanted a logo that would tell them that we were there to look at what we could do to help communities build these things. So we had a national contest of Native artists to come up with our logo. And this is the Spirit of the Eagles logo, which incorporates symbolism from many different tribes. It's like a medicine wheel, but it's not exactly the medicine wheel of the Siux. It's like a circle of life that the Cherokee use, but it's not exactly their symbol either. It uses the traditional colours that are usually considered sacred amongst most tribes, but not all tribes use these colours. So it was symbolic enough, broad enough to have visibility. And it used the eagle because in most of our Native cultures, the eagle is a sacred bird that is associated with spirituality, very important for our program definition; health, which obviously we're involved in; and strengths, and we wanted to be seen as all three of those. We wanted a holistic approach, not just addressing the physical needs of people in the communities, but addressing the psycho-social, the spiritual needs, the access to care issues, etcetera. Each of the eagle feathers is used to help the community understand that we have programs to help them in all these arenas. And so the very, very most important first step to our program is education, and that's why Anne Marie and I get along so well.

Without education, you cannot build in terms of screening, in terms of prevention, etcetera. We had a little conversation at lunch time, that in most of our native populations, which is also apparently true in your Aboriginal populations, there is no word for cancer. The closest translation is something like a sore that won't heal. But in Native experience, that was tuberculosis. That's what my family, two generations ago, died of. And it was contagious. And so if you use the words that were used closest to the words cancer, it would be interpreted as something infectious, something contagious, you would stay away from those people, because it was very clear that that was the only way to avoid contagion. So we've had a lot of education to do in the community to try to define what cancer is and what cancer is not. I'll talk more about that later.

And we had to have an advocacy role. We had to stand up and say, "these are the things that are happening in our communities, this is why women are coming late with cervical cancer. This is what happens when men don't have access to the tobacco cessation programs or to emphasise the spiritual use of tobacco, instead of the abusive use of tobacco". I can remember still when I talked about wanting to set up our program to address tobacco as a major health problem in many Native groups in our area of the country, many people said, "ahh, you can't do that. Tobacco is sacred, everybody knows tobacco is sacred". Well it's not the tobacco that the tobacco companies sold to these natives that's sacred. That wasn't the traditional way. And we found traditional healers and traditional leaders who were able to support us in developing symbolism and messages that would say the sacred use of tobacco, the spiritual use is not a habitual thing. It is not the way in which white society has given it to Indians. And that needs to be adamantly approached and discouraged, especially for the youth. And up in Alaska, where I do a lot of work as well, tobacco never was sacred. They don't grow tobacco up in Alaska. So they have symbols from the iditerad race that stamps on tobacco and you could never do that down with the Siux, because there is a sacred context there. But in Alaska, you can be a sacrilegious as you want about tobacco and it won't hurt anybody's feelings.

Grants.. we give small grants to communities with the basic idea of saying, "give us one idea that will help your community understand cancer awareness, or will help your women go for screening, or will help your youth avoid tobacco, or will help someone who is suffering from cancer at the end of life. Give us your ideas and we will give them to the advisory committee, score them, fund them. If we can't fund you we'll give you ideas of where else you might be able to take this so that it might be something that your community can use. And it was amazing. It was amazing the ideas that people came up with. Just beautiful things. I couldn't have come up with such wonderful ideas. So you know, this is not my success story. It's the success of what happens when a community feels that it can address its own problems. That's what's the beauty of what we've been able to do.

Indeed, we are teaching those communities how to write grants to the Coleman foundation, to the Avine foundation, to Lance Armstrong, to the Federal Government, the Centres for Disease Control, so that as they gain skills, some of which they learned primarily from our group, then they can build on those. Or they can provide grants from their own organisations if they have means. And there are some tribes that do have more means than others. So all of those things have blossomed over the years.

Leadership. If you don't have leadership to count on then you're just talking to the door. You have to find out who are the opinion leaders within the community. In our case we felt we needed to be a national program with national leaders, as well as local leaders. So the National Indian Health Board, which has representation of all tribes across the country, was a natural partner for us. So we have worked with them for many years now and in fact now we give awards at their national conference for cancer control, on the policy level and community action level.

Elders, because as all of you who deal with cancer know, elders are the most at risk for cancer. Elders probably have the least education. Elders probably suffer from the most myths about cancer. And they are a valued resource. They are the ones to pass on the traditions to the next generation. I'm an elder now. So I need that respect. I need someone to care about what happens to me.

Scholarship, so that we could develop the next generation opf researcher, the nurses, the physicians, the PhD students, and it's always exciting to me to find young students who are just so excited to want to go out and conquer the world. And they have a lot more energy then we have at this point.

And then what I found earlier on in my work was that survivors are just incredible. Probably the best thing I ever did in my whole medical career was to help survivors find a voice. Find a voice within their own communities. And as I told the group at noon, I would go with any little group, four or five women, talk to them about breast and cervical screening. Two three med, talk with them about how patients get referred off the reservation for health care or what the tribal council does in terms of prioritising health care dollars. Or what are they doing about keeping the youth from alcohol and tobacco. And gradually as I went around from place to place, people would come up after and say, "Dr Kaur, I'm a cancer survivor, but no one here knows that. Maybe it's time that I spoke to my sister, my family or our tribal council". And that's incredibly powerful, incredibly powerful. So it is the survivors now who are actually leading the majority of things that are going on through spirit of eagles out in the community. And I'm happy to tell you that in September, the national survivors conference that took place in Denver Colorado had over 500 men and women from tribes all across the country and into Alaska, who have survive cancer. Who came together to share with one another and to develop ideas of what they could do to help their communities defeat cancer. So it's been a wonderful thing to see. Going from, I can't say the word cancer, because it's a shame and it's people will think there's something wrong with me, it's a white person's disease. To now being proud to be a cancer survivor. All in one generation.

So this SEAR stat that was developed and is available on CD ROM, that was supposed to provide the best up to date information, with a data base of two and a half million cancer cases, software tools - Software tools. We have a software guy down the back there to calculate incidence of survival rates. But we had no incidence rates for cancer in native people. We had worse survival rates. That we could document pretty well. That you know they thought cancer was not a problem. But if you got cancer, of course it was a problem because you died. Until we got to show that there were people that survived cancer and that we can do better in terms of the statistics. And so we worked very hard to do cross linking with the tribes and the Federal Government and State governments. Every time that we've done that, both sides have benefited. Every time we've done that new programs have been developed to meet the community need. So, when we do that though, we open up a can of worms, because then, people ask very basic questions. Once you start talking about cancer. And it's okay to talk about cancer, then you go to a tribal meeting and people want to know. What are the most common cancers in Indian people? What do you think they are? They are the most common cancer that are also in the white population. Just by sheer numbers, the common cancers are common in Indian people , just as they are in the white population. So breast cancer. Cervical cancer is excessive in this population, largely because of screening issues in the past, but now have been dramatically improving. Colorectal cancer, and I'm going to show you some of those statistics are very interesting. So when the tribal leaders ask us "what are the most common cancers", you better be ready to give them some information.

How many new cancers of each type each year? Because those patents were being sent off for treatment, or voluntarily leaving because of their shame of having cancer, there wasn't a good understanding of what the tribal burden was. And they really didn't know what the financial cost of contract health care until quite recently. So that cancer has become a very important issue for many, many tribes. And they want to know, are these numbers, the incidence numbers, are they high or are they low? How do they compare with other populations? That's only natural. If they find out that they're higher, why are they higher? What are we supposed to do about that?

Are they increasing? Well, very clearly, cancer has been increasing over the last two generations. Whereas at the turn of the century and into the 1960s cancer was relatively uncommon in native groups, now it's second most common cause of death in our Native population. In Alaska, it is the the most common cause of death of Alaskan Native women over aged 40. So we have a lot of work that we're doing in Alaska.

They want to know if you're going to bring screening programs to us. Do they work? Are people actually getting in early enough, or are we just seeing them in the late stage of disease?

And what about the treatments. One experience we had with the Centre for Disease Control where there was this grand scheme to get all poor women and under served women in for cancer screening. What they forgot is what happens if you find cancer. There was no infrastructure built to take care of that. So what kind of system invites people to come in and say "if we find it early we can cure you" and the when they find it they don't get sent for treatment until a year later. So we had to work on those issues and make those advocacy claims very string, so that now those screening programs can actually take care of the diagnostic biopsies, can refer for treatment, can develop navigators that can get people into treatment earlier so that then ultimately, the survival rates will change.

I did a study in the Siux women a decade ago that showed that the average Siux women with an abnormal pap smear it was eighteen months before she actually got treated for that. So why is there a surprise that their survival rates were not high?

And do we have any unique cancer risks? Alaska asked us to come up and try to figure why they were having such problems with head and neck and mouth cancers. And I was mentoring a young research student who had some background in tobacco research. And I sent her up to go talk with people in the villages, particularly the nurses. The nurses were very concerned and they actually thought that infant, or newborns, were withdrawing from something, but they didn't know what. And so in piecing together what was happening in that village, they found that the people were using traditional herbal leaves as a type of tobacco that they'd used for centuries up there, and that it was helpful for relieving morning sickness in pregnant women. But they were adding a local ash from a fungus off a tree that was in that particular region and by doing that they had alkalised the tobacco, the nicotine, so highly that it was like free basing nicotine. And the infants were in fact going through nicotine withdrawal. So that was a unique risk that you're not going to find in Queensland, I don't think, and that we didn't find anywhere else in native country. We've had a lot of issues with tobacco, but that was unique to that population and it came from observations from the nurses and a request from the community to help them figure out what was happening here.

As we were saying earlier, breast cancer is the most common cancer, no matter which group you are talking about. The mortality rates from '94 to '98 were the last ones that the Indian Health Service had, and if you look at the various areas of Indian country, the important part is that there is this variation across here in terms of the mortality rates from breast cancer compared to all US rate. But what also was apparent going back to the 1970s is that those rates have doubled in the last twenty years. And now the new rates that are going to be released in 2007 that I've been working on with the National Cancer Institute, the Alaska and the Northern Plains are actually, Alaska's actually higher than the US rate now and the Northern Plains is very close, it's like breast cancer mortality. And for the first time we're going to have incidence rates also to report on that. And very interesting from a research point of view and something we have absolutely no handle on, is that prostate cancer is relatively uncommon in American Indian and Alaska Native men, except in the Northern Plains. And where I work we get a lot of patients from the Northern Plains, and I was seeing Native American men in their thirties and forties with prostate cancer and sometimes with familial prostate cancer. And that had never been reported before. So there is something that still needs to be defined within the Northern Plains. On the one hand you could say that the men weren't getting prostate cancer because, one they weren't being screened, and as many of you know prostate cancer can be a disease that you may die with but not necessarily die of, so here certainly is a screening issue there. But when you seeing prostate cancer that's clinically significant in 30 and 40 year olds, that's not a screening phenomenon at all. So there is something different going on there that we are developing some research protocols for.

Lung cancer mortality. What do you thing separates the South-West Indians from the Northern Plains Indians to give them lung cancer? Smoking, or use of smokeless tobacco, both. So clearly the rates are distinguishing from one area of the country to the next and they're very dependent on tobacco use. One of the interesting things about the South-West though, and I don't understand it at all, and I've talked to some of the traditional healers and some of the tribal leaders, if men in the South-West smoke, they smoke about three cigarettes a day. They never seem to become addicted. So there must be something pharmaco, grnomics, or protomics, that will explain that to us and they often start at a very young age. Many of the boys start smoking at 10 in a ceremonial fashion. And smokeless tobacco from age five. But they don't end up with lung cancer unless they also go into the uranium mines. So they uranium-tobacco issues within the American South-West are the main cause of lung cancer among that small sub-group of men. But elsewhere in Alaska and the Northern Plains, it clearly is habitual issues. As I told you, in Alaska, they don't even grow tobacco in Alaska. So where did they get the tobacco? Where did they get the habit? And when did they start getting lung cancer?

Well it came with the Russians. Remember, Russia owned Alaska for a while and I didn't quite understand that until one of my mammography research projects in Alaska, where in order to go through the mammography files I had to get clinical privileges of the Alaska Native Medical Centre. All of a sudden I was struck by how many of the women in Alaska had Russian surnames. And it was coastal women. So the sailors come in, and well you know sailors, so that there was a distinction between the breast cancer rates in coastal Alaska and the interior, where the Indians are, as opposed to where the Eskimos are. So there's some very interesting population statistics based on where you live in Alaska, just as I understand there are some differences across Australian too, in terms of where you live. And so, in Alaska, the smoking issue came in the last couple of generations as well. In the Northern Plains, it's been around for ages, but most of it was traditional and religious in nature until that became more the westernize type of activity.

Another area of interest in research for us for the future and things we're doing now to incorporate colorectal screening in the populations is that the colorectal rates in Alaska and in the Northern Plains, also are higher than the US. And there is a screening issue in terms of mortality rates, but the interesting thing in Alaska is that the rates are actually higher in women than in men in Alaska. Whereas across the US it's pretty much 50-50. and we don't quite know why that is. It may be human papilloma virus, associated with polyp formation, we don't know. We also don't know in the Northern Plains whether it's genetic. There definitely have been some link from many families identified with colorectal cancer, breast cancer, endometrial cancer in the Northern Plains. So it may have to do with some of the genetics there. So the all sites mortality rates for both sexes show this clears geographic difference and so one of the things we also have to caution against is saying, well you know we're going to put all of our eggs, and all of our research dollars into Alaska and the Northern Plains, because these guys are doing fine. Well, if you look at the trends over time, this is the time to make the difference. Not when the rates are equal to the US. This is the time to make sure that screening and prevention strategies are going on. So that you don't end up with an enormous cancer burden in the next 20 years in those groups.

So our leadership initiative on cancer, our Spirit of the Eagles, is addressing comprehensive tribal cancer control through partnerships with this advisory board that was created 20 years ago with tribes as partners to define what they want to tackle as the issues within their community with multiple cancer centres, including Fred Hutchinson Cancer Centre, University of Washington, Oregon Health Sciences University, The American Cancer Society, the Lance Armstrong Foundation, which actually is a new partner for us and has been wonderful. Absolutely wonderful in terms of survivorship issues. We have really developed a community prioritisation strategy with Lance Armstrong Foundation that will help them fund community based survivorship issues. It's just been beautiful to see that take off.

Was I telling you Pam, or Anne Marie, about the young woman from the who had a dance shawls, traditionally natives come together and we have powwows and we have dance shawls. And the shawls are usually fringed like this and they are quite colourful and they might have different traditional designs on them. And this young woman had a dance shawl that had a US Postal Service emblem on her shoulder, very prominently displayed. And I went to her and I said, "why do you have that", and she said, "I'm so glad you asked, when I wear this everyone asks that, and I tell them my cancer story. Because everyone notices it". And she was so inspired by the Lance Armstrong Foundation that she wanted to honour that and because of that now we have a whole shawl project going on across the country that wherever there are Native gatherings for dancers, there are people wearing shawls in honour of cancer survivors, or their own family members who had cancer or who just wanted to be simpatico, if you will, with the fight against cancer. So there's now this big pink shawl project going on across the country where different groups are making shawls of different varieties. So we went from where you could not say the word cancer at a powwow 20 years ago, to now where everyone is visible and proud and helping one another within the community. We not only have the shawls for the women, now the men want the vests and the shirts and they want their recognition too for working in the fight against cancer.

So how do we assist tribal communities? Well, we try to help first with the educational component, making them more aware of what's going on in the community. Helping them understand cancer. Providing them with the basics, what we call Cancer101. providing training and cancer control research for American Indian and Alaska Native researchers. So we have a competition twice a year to find leaders out in the Native American community who want to do something in terms of cancer control; bring them together and train them in basic epidemiology, cancer control, grant writing; have them develop projects there and go out into the community and do their projects; share that in meetings with other Native people around the country; put them on our website; brig them to Mayo Clinic; etcetera. So that we have home grown, community based cancer researchers out there. And we have improved Native community channels to the National Cancer Institute, so that research can be specifically focused on issues that affect Native communities.

Remember my story about the babies that were withdrawing. Well that led to a whole research project that now is funded by the National Cancer Institute, that had no idea that there was this possibility of freebasing nicotine by adding ash to your mix.

To meet those specific aims we do focus a lot on Cancer 101, we do talk about the most common cancers as well as the rarer cancers. We develop curriculum and training and use focus groups and support survivors to pre-test a lot of materials. Cancer survivors are the key of that development. We have talking circles and support circles that are facilitated across the country. We've recently, in the last few years, gotten into end of life care and pain education out of a need that communities expressed to take care of their own. And recently this education for physicians on end of life care in oncology is going to include culturally-specific materials that we have helped develop and that I will be teaching in a train the trainers session at the Navaho Museum, in January.

But primarily, we're helping communities take control of their own health issues. In recent years, tribes have become empowered to start taking over their own health care and administrating it. It's a very big challenging thing because it's something they've not been empowered to do before and we felt that if we did not get cancer on the agenda tribal leaders wouldn't know the first thing about trying to take care of it. But now we have a real alliance with tribal leaders across the country. Families and family talking circles, multi-generational education. Very important for young women to address the older women with respect of why they want them to go for their exams. For older women, to tell the younger women how to take care of themselves and what to do. For the tribal elders to talk to the youth about tobacco and why they want only the sacred used of tobacco in their community. Media campaigns devised in the villages, beautiful artwork, beautiful messages, things I couldn't just make up, but that resonate with the communities where they are. Workshops and retreats and conferences. Lots of opportunities for people to network and learn from one another. Because we can all learn as we go along.

Survivor website development that's being done as a national project. My friend Linda B is going to be coming to Australia after this New Zealand conference and she's going to be meeting with Indigenous leaders in Alice Springs and in Darwin. And collaboration with traditional practitioners, who actually come to us and said, "we don't know much about caner, we need Cancer 101. We want to help people, we have ideas of what helps with pain control, with nausea, with traditional herbal teas and whatever, but we really don't understand cancer. Come and talk to us and let's work together on these issues".

So when we look at a conceptual model of cancer control, this looks very busy, and it is. But we're looking at everything from primary prevention, which is to look at the population at risk, and their health behaviours and their genetic and risk factors, and markers of risk there. Whether they were minors in the uranium mines of South-West, or whether they're smokers, or whether their sexual habits put them at risk, and how that influence the development of disease, and how that influences secondary prevention through detection and screening programs. Then how do we get them from there to tertiary prevention with the best cancer treatments. And if we don't pick them up at a time when they're most curable, that doesn't mean that we need to abandon them. We need to address these end of life issues in culturally specific ways. Because ultimately, they die from cancer, or they die from other causes that we need to take care of the whole patient, the whole family, the community. So all of these things are affected by how we develop the cancer care delivery system.

And we know there's a smoking gun in my part of the country. And even the tribal elders laugh at this one. Projected outcomes, we've measurably increased the awareness of the problem of cancer among American Indians and Alaskan Natives, we've done it on the whole family approach. We've increased early detection of cancer. We increased the number of American Indians and Alaskan Natives seeking clinical trials. Again we have the issues of co-morbidities and how to make the clinical trial system meet the reality of what's actually out there, where a lot of people don't just have cancer, they have other health issues as well. And we are growing the next generation of researchers. As an elder, I can't really retire until I make sure that someone can follow in my footsteps and do this work properly. And so Jonathan Banes is from Alaska, and his brother is a contemporary of mine, and I've known him for 35 years. And Jonathan cam along as trying to follow in his brother's footsteps but got very interested in bench science as well. So I encouraged him to go into the lab and work on cervical cancer vaccines which is a wonderful story in itself and something we don't have enough time for tonight. But Jonathan received his PhD based on his bench research about the immunology of cervical cancer vaccines. But when he received this wonderful honour, as the very first Alaskan Native to get a PhD/ MD combination, we made sure that we honoured him in a traditional manner as well as just the typical regalia of the graduate. So that the eagle feather and the classical Alaska Native robe was awarded to him at the same time.

One of the thins that we do for our native medical students is to make sure that they stay connected to their culture. Because if they don't, then they can't come back and relate and meet those needs either. And I learned that myself from a good friend of mine many, many years ago, where I was in medical school and he and I had been classmates and I'd known him forever and I went to a powwow and ran into him after not seeing him for a while and he said, "where's your dance dress" and I said, "well I'm on call". I didn't intend to dance tonight. And he said, "our people need to see their doctors dancing. And he made me a dress and hand painted it and his sister made me beaded moccasins, so that when I go I can dance with the people. And it was an important lesson for me as I was caught up in the struggles of study, and being on call and trying to meet the western model of medicine, that I needed to stay connected to my own cultural roots. And so we try to do a lot of mentoring of our native students so that they don't feel so alienated. So they know that it is possible to be the bridge between the two healing cultures. And we also honour our traditional healers as well, because there are many forms of healing. Many forms of healing, not just mine. The difference between me and a traditional healer using herbs and potions and ceremony is that I always want to know "what was in that leaf", "how much do I have to use" ,"which cancers will it work on". That's the scientific mind that I was given by the creator, but that doesn't mean that I don't value the traditional healers ability to ease pain and suffering.

So are we moving forward? Certainly my grandson was making progress. Sometimes it seems like we are just crawling. Sometimes it seems like we're never going to get up and run. We're never going to get anywhere and we have these stumbling blocks and we run into the kitchen counter there, and you don't know where to go. One of my wonderful people that I am privileged to associate with who works with African Americans, Dr Harold Freeman. He and I have had a disagreement about this. He uses the terminology that cancer is a tsunami and that people are going to be over whelmed by it. And I tell him, in our culture that's not the image that I go out and talk to the tribes about. A tsunami is something you can't plan for, you can't have early detection by current means, and once it comes there's nothing you can do about it. This person standing there has no chance. That's not how cancer has to be viewed in our communities. We are not facing a cancer tsunami and I will not agree to that imagery for what I say in the community.

But instead we talk about how we can help whole communities that are empowered through education, this is the native circle education, that goes here there and everywhere and that knowledge is powerful for all people. And many of our materials are picked up off the internet and they're used in Canada, in First Nations, and they're used in the North-West Territories, and they're used in American Samoa, and Guam, and the Mariana Islands, and one day my co-ordinator, Lisa, came to me and said, "Dr Kaur, do you know anything about the Native Americans of Belarus'". And I said, "Oh that's got to be a joke". And then I contacted the leader of that group, and there really is a Native American community in Belarus, and they have very high lung cancer rates, so they thought that maybe as a Native American researcher I could tell them why they have high lung cancer rates. And of course it's because they live in Russia and they drink and smoke. So they are working on that with some of the materials we are providing them. Knowledge is power.

And we all have to stand up. We all have to take chances that we're not going to fall down. We have to pretend that we're not Humpty Dumpty sitting on the wall, and we're going to fall off and it's all going to fall apart. Sometimes if you are dependent of research dollars it feels that way. Any junior researchers here who are afraid they're going to fall off it they don't get their next grant? But, it is a building process, and the most important thing is that there's such strength in people working together. It isn't an individual, we learn from one another. Just as this little guy learns to take chances by the people around him, encouraging him to stand up. And we all have to stand up and be counted.

So for historical references, they said small pox was hopeless. I have a horrible small pox vaccination on my arm. Do your children need small pox vaccinations? Does my grandson, my grand daughter? No, they don't.

They said TB was hopeless. My mother was raise in an orphanage, because her mother died of TB and at the time it seemed like TB was hopeless. I can remember so many friends, neighbours, relatives going off to the TB sanatorium. I can remember the first time I went to the reservations in North Dakota, where I encountered patients with drug resistant TB. Well, TB is not gone, but it is no linger the hopeless scenario that it once was.

They said polio was hopeless. I was involved in one of the first clinical trials with the Sabine vaccine. I remember it very well. They came around with the sugar cube instead of the shots. I didn't sign any informed consent though. But I didn't get polio. And one of the interesting things, one of the great historical things in my medical school experiences, was that they had Dr Sabin come and talk to our medical school class. And it just resonated, that here I had that experience in my own lifetime. And I said to him, "you know, what made you sure that you could do this". He said, "Well, the professors said it couldn't be done. You could never make a vaccine against polio. So I just decided I was going to go do it". So I decided I was just going to go help Native Americans with cancer. So cancer should not be hopeless, and it should not be hopeless for anybody in Australia, and not for your Indigenous populations if you can all stand together and garner strength together and just put one foot in front of the other and on problem at a time, and just build on those successes.

So, I thank you so much for giving me the chance to come and share our story.

Podcast Keywords

Indigenous, cancer control, prevention, Native Americans, Mayo, psychosocial issues