[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] Welcome to the Komen Health Equity Revolution podcast series on Real Pink. Each month we bring together patients, community partners, healthcare providers, researchers, and advocates to talk about real challenges and real solutions driving the health equity revolution. Together we’re working to close the gaps to create a future of breast health equity for all Today we’re honored to welcome Dr.
[00:00:42] Linda Burhansstipanov, a trailblazer in native cancer navigation and the founder of the Native American Cancer Research Corp, she has spent decades designing navigation programs that truly meet the needs of Native American patients and families. As a part of our Native American celebration, we’re exploring how culturally grounded navigation can improve screening, diagnosis, treatment, and survivorship.
[00:01:09] Dr. B. Thank you for being here and welcome to the show.
[00:01:14] Linda Burhansstipanov: Thank you, Adam, very much.
[00:01:16] Adam Walker: Well I love what you’re doing. I really like, I love talking about topics like this. I know you’ve dedicated your career to improving cancer outcomes for Native American communities, and I really just so admire that.
[00:01:29] Can you start by sharing some of the unique challenges that Indigenous American patients face when they’re seeking breast cancer screening or treatment?
[00:01:38] Linda Burhansstipanov: Absolutely there, there are quite a few. And if you talk to anybody, any navigator who’s working with a patient in need, the most common issues are transportation and financial issues, but transportation changes depending on where you live.
[00:01:54] The example, if you’re looking at Alaska natives, the size of Alaska is as vast as is the lower 48 contiguous states. In the majority of geographic areas in Alaska, there are no roads, so your only access for transportation is by plane or boat, unless it’s winter and the RI rivers are all frozen. If you are on Plith, out in the Aleutian Islands.
[00:02:21] You have to fly back and forth to Alaska Native Medical Center or to Fair Fairbanks in Anchorage. And if it’s too cloudy and you can’t land, you have to pay for the flight anyway.
[00:02:35] And you’ve got some treatments that are available in Ketchikan that’s down in the southern end of the inside passage of Southeast Alaska, or there’s the Bartlett Medical Oncology Center in Juneau.
[00:02:48] So really, when you look at how vast Alaska is, transportation is nothing like people talk about it for the lower 48. And if you are not native and you live in the bush, you don’t get any help on it. Whereas if you’re Alaska native the South Central Foundation in Alaska Native Medical Center will help pay for the plane.
[00:03:11] Then you have a different issue because you’ve got patients who are going to the airport, they’re flying down to Anchorage, and they’re gone sometimes for weeks or months, children. Think they’re never coming back. They think the plane is taking their mother or their father to heaven or you know, they have all these other stories about what they think happens when somebody leaves for a cancer treatment.
[00:03:35] And what’s nice about Alaska Native Medical Center is. That family members can also travel and they can stay at unique facilities. So they have put in a kwana house, it has 56 rooms, 108 beds, and the whole family can be there and support. And that is so wonderful when you’re going something as scary as cancer.
[00:03:57] So when we say transportation. It has a totally different meaning. Similarly, if you’re in the lower 48, some of our reservations have major highways. The majority do not. Some of them are dirt roads, some are meda. In the urbans, in our program that’s down the mountain in Denver, people may have to do five bus transfers to get to and front.
[00:04:22] Clinic from where they live. And weather plays havoc. So if you’re in the southwest and you have monsoons, the roads get washed out. Or in the northern plains or in the southwest sometime you have major storms or you have a blizzard in the north and you’re stranded and you can’t do it. So people will have things like four wheel drives while you’re riding on a rough road.
[00:04:44] You just came back from a breast cancer treatment, you’re bouncing around in the truck. And as a navigator, we know that we need to bring extra pillows and extra blankets because. People suddenly feel nauseous after a chemo. And sometimes for other treatments, and you need a bucket in the truck.
[00:05:04] Because all of a sudden it’s like, I need to throw up.
[00:05:07] Adam Walker: Yeah.
[00:05:08] Linda Burhansstipanov: So the rough roads are quite different than what a lot of other people do.
[00:05:13] Adam Walker: Yeah.
[00:05:13] Linda Burhansstipanov: And, cDC funds about 15 tribal or urban Indian programs out of 574 federal re, re reservations or 41 urban Indian clinics or centers. The beauty of going through a tribal or an urban Indian breast and cervical cancer early detection program is that it’s phenomenally more successful.
[00:05:40] And follow up than it is when our Indigenous people go to a state supported program. So having that cultural gentleness come in and talking about where you go for care if you’re an Indian country we don’t have. We have contracts with where we have to send our people to for cancer treatment other than the Salish Cancer Center in Fife Washington or Tuba City.
[00:06:09] That’s on the western edge of Navajo. So we’re once again being transferred long distances away and some facilities such as Monument Health. They’ve done a great job providing some housing for people when they come in. So that’s just for transportation. So you can see it varies quite a bit. And if you look at financial issues overall in general, less than half of American Indians, Alaska Natives have private health insurance.
[00:06:38] We have a system that is called Indian Health Service. Indian Health Service. Is not insurance. It is not an entitlement program. And so it’s quite difficult and it is the last payer of choice. A lot of people think Medicare is or Medicaid or the Veterans Administration, but it is not. It is Indian Health Service and purchase referred care.
[00:07:02] If you’re in Alaska. South Central Foundation and Alaska Native Medical Center, they have a very unique system of care. It’s called NCA and nca. Everyone is a real customer owner of the system and they have made their care and their follow up absolutely beautiful in being respectful for Alaska native cultures that are up here now.
[00:07:27] If you are looking at finances then and you’re looking at, we’re the worst paid federal system when we fight for our money every year from Congress. If you are looking at having to use purchase referred care, our federal year begins October 1st. Now, you know, we just went through a federal freeze.
[00:07:48] That means no one who had to be referred out for breast cancer care has been referred out, but in reality. All of our programs run out of money by June, so if I’m diagnosed in stage two in June, if I had gotten into care, the cost of the first year of treatment is approximately $82,000, but I can’t get into care yet.
[00:08:11] I have to wait until the next fiscal year, and then all the other problems that accumulate prior to my breast cancer treatment. I’m lucky to get in by February. If it’s by February, I’m stage three. If I’m stage three, instead of costing Indian Health Service purchase referred care, the 82,000, I’m charging them 129,000 for the first year, and it goes up to 159,000 over two years.
[00:08:37] So there are financial issues that affect it, which is why the majority of it were people. Try to go through IHS. We try to go through purchase referred care, but we end up having to go through Medicare, Medicaid. We look at other programs such as Patient Advocate Foundation. We look at all different types of programs that we could use.
[00:08:59] We have a lot of veterans. Proportionally, there are more Indigenous people who served in the armed forces than any other racial group in the United States.
[00:09:07] Adam Walker: I didn’t know that.
[00:09:09] Linda Burhansstipanov: No, most people are unaware of it. So the VA we find in general, they’re able to treat our men and women with breast cancer usually faster than Indian Health Service can because they get a whole lot more money per.
[00:09:22] Then Indian Health Service is able to provide, right? So the navigator really has to know the system, and this is not unusual then we are the only racial group in the United States that we have to have an ID card. So I can’t just go into my local Indian Health Service clinic and say, I’m Cherokee Nation of Oklahoma.
[00:09:43] I need to have services. I have to show a certificate of degree of Indian blood. Now I can go anywhere because IHS has an open door policy and when I have my CDIB card, I can show it to them and get services. And they’re very good about anybody who’s in an emergency. They open up their doors for non-Indians and you know, so, and they try to do what they can.
[00:10:06] Another challenge is translation. If you’re Alaska native, translation services are available in. Alaska Native Medical Center in the Fairbanks Clinic and a couple of the other clinics that I referred to. So you’ve got in up, you’ve got other types of Siberian Husky have, yeah. Siberian Husky, Siberian, Alaska Natives have different language.
[00:10:32] In the lower 48, there’s still 217 Indigenous languages spoken.
[00:10:37] And
[00:10:38] I know we’ve had laws that hospitals are supposed to provide translation services, but they can’t.
[00:10:44] Adam Walker: Right.
[00:10:44] Linda Burhansstipanov: Realistically, they can’t to all these, and you can’t use a family member to do your translation. Issues with that. Then there’s sculpture, there’s different types of cultural and spiritual issues.
[00:10:58] So. Almost all of our American Indian and Alaska native patients combine western medicine with traditional Indian medicine or traditional Alaska native medicine. And people who aren’t familiar with our community, they may have heard of a sweat lodge, you know, where you crawl in on all fours, like a bear.
[00:11:17] You go into the sweat lodge and sweat lodges are very powerful. But there are intensive ceremonies when you are diagnosed with cancer. People do a more intensive ceremony. They’ll do something like Sundance or Green corn or a, there’s many different ones that they may do. You may have to prepare for six months before you can do the ceremony.
[00:11:41] The navigator, who knows the community, knows to talk to the family and say, we need somebody else who will dance for Mary Lou.
[00:11:50] And that she needs to be there and we can pray, but she cannot dance because some of these ceremonies you are dancing all night long and you are allowed water, but you are not allowed any food
[00:12:03] Day, sometimes for three days. These are very strenuous. So it’s quite different than how people understand our ceremonies. Then we have comorbidities. One third of our cancer survivors are diabetic. If they’re over 50 years old, most have arthritis. Most have cardiovascular disease of some type, and the majority of our adult population tends to have obesity.
[00:12:31] All of these. Contribute to other issues the navigator has to look at while they’re looking at how can I help my patient get through the breast cancer journey. And we know there’s contraindications of meds with some of the other conditions that are there. So. The navigator ends up having to deal with a lot of programs and trying to figure out who IHS can work with or who the local program can work with, or how we get resources.
[00:13:02] And what we do find is navigators, well-trained, competency-based trained navigators are very successful in overcoming most of these out challenges. So I know you helped develop. Culturally tailored navigation models. Why is patient navigation so important in these communities and what does culturally grounded navigation look like in practice?
[00:13:24] Right. Well, the navigator knows how to work with our healthcare system. Again, competency trained native patient navigators in particular. They know how to deal with a fragmented healthcare system. They know how to deal with health differences. They know how to promote. Prevention or reducing risk through education.
[00:13:44] They help increase screening they save healthcare costs. Phenomenally successful. They facilitate access to care. They help make appointments for people. They make certain, they show up for the appointment. They meet them at the clinic. Sometimes they go out and they pick them up at their house and bring them in.
[00:14:07] They. Are so effective, it reduces the number of emergency department visits.
[00:14:14] And we have all different types of ways to document. And what’s real important is that many states and Indian Health Service are trying to change the label of community health. Representatives to navigators, and you cannot do that.
[00:14:31] That is not fair to the CHR, nor to the patient, nor to the field of navigation. They don’t have competency-based training if they go through the training. That’s great. That’s wonderful. But. They’re very effective in doing that. Most of our native patient navigators, they’ve gone through the IHS or purchase referred care system.
[00:14:53] They understand it. They’ve had to do Medicaid, medicare, TRICARE service members, group life insurance, you know, so they really have to have a pretty broad base on how to jump through the hoops to help our patients. And the. The navigators are incredible for advocating for the patient and for the family.
[00:15:15] And because we usually have family caregivers in our facilities also, so. They’re able to get patients into a higher quality of care and they coordinate with clinical trial recruiters. When we find we can find that we can get people into clinical trials, but when you have a navigator involved in working with the patient, the retention.
[00:15:41] It’s
[00:15:42] almost a hundred percent.
[00:15:43] So the navigators, they are absolutely invaluable. And in terms, what does culturally grounded MA patient navigation look like? It’s gentle, it’s calm, it’s cool. It’s collected, it’s respectful, it’s patient, and the patient navigator listens more than talks, until the patient asks and is ready to be listened to. And the navigators communicate in culturally respectful ways with the patient and with the family. For example, the majority of US society. Talk on top of one another’s words, and that is not a normal pattern of speech for any of our 574 federally recognized tribes or the 62 state recognized tribes.
[00:16:29] We do a long pause after we say something, and part of that is out of respect to make certain the person who is speaking has a chance to say. All of their words to get them out. And then if I’m the patient, I have to think what that is in my first language, my primary language, what I need to ask, or how I need to answer it, translate it back into English, and then go to, that’s a long pause.
[00:16:57] And healthcare providers are not used to that at all. And the navigator helps them say, wait, she’s translating. Give him a moment. Touch is another issue. Some tribes, the, there’s hesitancy to allow touch automatically. Eye contact is pretty rare, but there are some tribes that you don’t look directly in the eye.
[00:17:19] You may look up here in the forehead, you may look on the cheek, you may look on the chin, but you don’t steal someone’s spirit unless you are a very close family member and you have permission. There’s not a lot of tribes that have that, but if it does, it’s important that you are respectful for that type of a pattern.
[00:17:38] And many of our native patient navigators. They go out to the patient’s home or they go to the place of work because some people don’t want them to come to the home because they have to clean. They said, no, come to work and let’s meet there. And then you follow the protocol example. You always bring a gift.
[00:17:58] You don’t show up to somebody’s house or place of work without a gift, and you have to know what’s important for your community. With so much diabetes, you wouldn’t bring a gift that’s going to be high sugar or contribute to diabetes of the patient or the patient’s family because a patient always shares a gift with their family.
[00:18:16] Same thing. You don’t want a gift that’s gonna contribute to cardiovascular disease. So. Sometimes as culturally grounded navigation, sometimes you’re crying. And I’ll tell you what, a lot of times you are laughing. Our patients are hysterical. They’re so cute. They’re so fun. And laughter gets rid of some of the stress and the anxiety so that you ask and talk about what you really want.
[00:18:41] But there’s always love. There’s always passion, there’s always caring.
[00:18:45] Adam Walker: I love that. I love so much of what you just shared. I, patient navigators are some of my favorite people on the planet. They’re just unbelievable individuals. Yeah. So, alright, so, so in your experience, let’s talk about trust building. How does trust building, especially after historical trauma and negative clinical experiences, shape a patient’s willingness to engage in screening and in treatment?
[00:19:14] Linda Burhansstipanov: Yeah it can be difficult. And again, our navigators are very good about it. You know, and that’s one of the criteria that we have when we’re hiring navigators.
[00:19:25] We, we found that their level of education was not as important as it was their passion for the community.
[00:19:34] And we find with passion comes trust with it. And we also found because over the years we’ve done so many dinner. Different interventions with navigators at different level of academic training.
[00:19:49] And we found, even if it was a nurse navigator, we had to train him or her as much as we did somebody who was a high school graduate.
[00:19:56] Because you could maybe in nursing school and get five hours of cancer education. That could be it. Yeah, it really varies.
[00:20:03] Adam Walker: That’s fair. Yeah.
[00:20:04] Linda Burhansstipanov: So having a navigator is one great way to do it.
[00:20:09] And we have a lot of reasons to distrust the government. You know we joke, we will come in and we’ll say, Hey, I am from the government and I’m here to help. Hey.
[00:20:20] Adam Walker: That’s the humor you were just talking about. I love that.
[00:20:22] Linda Burhansstipanov: Oh yeah. Oh yeah. But every tribal treaty with the US Congress has been broken. 100% have been broken. And you mentioned the unethical, care and treatment, the sterilization of American Indian women without informed consent that finally ended in the 1971. Have a supai that was total violation of informed consent, a death study conducted among the children in Hawaii. I mean, some of these are. Everyone knows about them in the community and they will have local examples of this. So one of the things that can help is that when you’re working with people in a community with whom you’re not familiar, get somebody who will help you.
[00:21:10] They will help you understand what the culture is. They’ll make certain you don’t make a fu pa and they’ll make certain that you do some things that are really important. Most of the time when we take part in a different program. We don’t realize it could be five or 10 years before, let’s say it’s a research study, it could be that long before the research results are published and we’re expecting to get the results within a few months.
[00:21:37] And so we have to make special efforts to inform people along the way what’s happening and. When there are findings to make certain, they’re shared with the community in an easy to understand manner. Yeah. So there’s a lot of different things you can do to improve trust and a lot of it is time and a lot of it is when you’re really, let’s say you’ve got a brand new breast outreach program that’s in a city and you want people to come into the city, well, we want you to come out to our homes too.
[00:22:09] I want you to see what it’s like. You can look at pictures on a screen. It is not the same thing when you are out driving in our roads and you look at the vast distances that we go through, or the rough conditions of the roads, or when you have to cross a river you know, or what it happens to be.
[00:22:27] So it’s, we want people and we want to host we want to say. We appreciate you coming here and we’re absolutely wonderful hosts and hostesses too, so come on out to us.
[00:22:40] Adam Walker: I love that. I love that. Well, so so, so speaking of families and communities, native families and communities play a central role in supporting someone with breast cancer.
[00:22:50] And so how do navigation programs support the caregivers in a meaningful way?
[00:22:56] Linda Burhansstipanov: Yeah. Well, you know, breast cancer impacts the entire family if they know about it. Yeah. By the way. Right. There’s some people it that don’t want, they don’t want to worry their family, so they don’t tell them. But the patient navigator educates the family as to what the heck is going on with the breast cancer patient.
[00:23:17] And sometimes it’s to reassure the patient like when they’re in the middle of treatment. So let’s say I’m a mom and I haven’t told my family. Then I’m going through it, but it’s obvious I’m getting so sick. And so finally I’ve had to fess up and let them know I’m going through breast cancer treatment.
[00:23:33] Adam Walker: Right.
[00:23:34] Linda Burhansstipanov: Family panics. They hate seeing a family member go through the distress and the angst that, that they are.
[00:23:42] And the navigator can help reassure them. And I’ll tell you, this is a statement that I can’t tell you how often I have to say it over and over again. You are not always going to feel this way.
[00:23:55] You are going to feel better. And they do they do feel better. And then the navigator clarifies what’s true and not true about breast cancer, such as the cancer spirit infects others and spreads the disease. And the navigator helps to coordinate with the traditional Indian healer or the Alaska native healer for the whole family to take part in ceremonies and to get guidance from our traditional spiritual leaders.
[00:24:25] They help find resources for cancer and other issues that are going on in the family. We almost always have comorbidities, not just with ourselves but with other family members. So another family member dealing with a health issue. And the navigator tries to find another program that will help them also.
[00:24:44] Adam Walker: Right.
[00:24:44] Linda Burhansstipanov: Sometimes the navigators take part in traditional ceremonies with the family and they interact with everyone differently depending on what it is. And navigators do that for all racial groups. That’s not unique to us.
[00:24:58] Adam Walker: Right.
[00:24:58] Linda Burhansstipanov: But if you didn’t want your family to know about the breast cancer diagnosis, the patient navigator
[00:25:05] brings it up and saying, are you ready to share this with your family yet? What do you want before you share this with your family?
[00:25:13] Adam Walker: Right.
[00:25:14] Linda Burhansstipanov: So they try to intervene. And they may sometimes the navigate, I’m sorry. Sometimes the patient only wants one family member to be involved, even though other family members are saying, I can help, I can drive her.
[00:25:29] Adam Walker: Right.
[00:25:30] Linda Burhansstipanov: You know, or I can drive him into it and. That designated family member, they may live in another area, maybe different part of the reservation. They may live in the urban area. They come back to the reservation. Now they’ve lost their job, they’ve lost income for the rest of their family. So it in it impacts the future financial situation for.
[00:25:52] The family that has been dedicated to care. And so the navigator tries to intervene and say, how about if her sister helps this week? Or How about your son says he wants to help drive? How about your husband wants to, you know whatever it is. And they try to help that. But the bottom line is you are there for the patient.
[00:26:18] Adam Walker: Yeah. Yeah.
[00:26:19] Linda Burhansstipanov: If the patient says, I don’t want this done, then you don’t do it. And and that’s important because it leads to some family discord in what happens and then that brings up other issues.
[00:26:35] Adam Walker: Yeah. There’s quite a bit to navigate, I think in that there between families and healthcare and everything else.
[00:26:43] What. What guidance would you give to patients or families that are unsure or nervous about screening or next steps?
[00:26:51] Linda Burhansstipanov: Yeah, I think the first thing is to clarify misconceptions and to acknowledge what’s a misconception and what isn’t. So a lot of people, you know they’re afraid because they think breast cancer will kill them.
[00:27:07] And sometimes people who aren’t familiar with. The history in our community, they blow that off. They say, oh, it’s, you know, it’s not, that could be our reality in our community. Yeah. And so we have to be respectful of that. And misconceptions, like we had a woman. First time we brought a mammal machine into this particular city area and a woman was diagnosed with breast cancer.
[00:27:37] And her comment to the community was that mammal machine gave me cancer. And I’ll tell you, we have an informal Moccasin Telegraph, and that went around the whole community and no one would show up. For the next
[00:27:52] week.
[00:27:53] Yeah. So we had to invite a female healer to bless and smudge the van, the machine, and the staff before any others would take part in screening.
[00:28:03] But when you’re in the community, you know, there’s things to that. But we had to first find out what was happening. Right. Have other people who will say thing like, mammograms don’t catch a hundred percent of breast cancer. Well, that’s true, but it identifies most of it.
[00:28:17] Adam Walker: Yeah.
[00:28:18] Linda Burhansstipanov: And you have other people who just don’t want to know.
[00:28:20] And so the navigator discusses advantages of early diagnosis compared to late diagnosis and all the benefits of that.
[00:28:29] Adam Walker: Yeah. Very common misconception is no one in my family has had breast cancer, so I’m not at risk at all. And the patient navigator explains that family risk is very important, but that for most Indigenous breast cancer patients, they’re the first in their family to be diagnosed.
[00:28:49] Linda Burhansstipanov: Very true. You know, the family risk increases the risk. But all women as they age are at risk.
[00:28:56] Or I have, I’m afraid I have a lump. And the navigator can explain that knowing rather than fretting is so important and that most. Most lumps aren’t cancer or I live a healthy lifestyle and I’m not at risk.
[00:29:12] Well, I’m sorry to say we have many others. Some are leaders, national leaders in our community who have been open about having breast cancer being very healthy, but still being diag di diagnosed. Yeah. Having a mammogram is part of being a well woman and it’s a model for younger generations. Yeah.
[00:29:33] Another thing that comes up a lot. Is an American Indians and Alaska native. Full bloods don’t have hereditary forms of breast cancer, BRCA one, BRCA two, triple negative, HER two new. However, the majority of our population has genetic admixture, meaning that we have had children with people who are not native.
[00:29:54] So
[00:29:55] even though to date, we have no one who is of full blood with any of those hereditary. The majority of our people are not full blood.
[00:30:04] We
[00:30:05] are at risk and we have to be careful.
[00:30:07] Adam Walker: Right.
[00:30:07] Linda Burhansstipanov: And then we find that it’s real important, good guidance is let other Indigenous breast cancer survivors share their messages.
[00:30:15] Like Martha Red Willow is Oglala Sioux, she’s in our local program, and she was diagnosed. 35 years ago. And her message when we initially interviewed her back in the early 1990s was having a mammogram isn’t painful. It’s having one too late. That hurts you and your family.
[00:30:37] Adam Walker: Yeah.
[00:30:37] Linda Burhansstipanov: And what’s really good message important is that message.
[00:30:40] And when our people come up with their own messages, our messages have to be linked to the family to have any effectiveness.
[00:30:46] When they are not, then the message is just kind of a waste of. Effort on what you’re doing. And the majority of our patients have good quality of life and quantity of life.
[00:31:00] After they go through the experience. And that’s important for people to realize. You may know of one or two that have had a bad experience, but in general it’s pretty good.
[00:31:10] Adam Walker: Yeah. Yeah. That’s so important, that perspective. So a couple more questions before we wrap up. Thinking about health systems and organizations that want to serve native communities better, what are some tangible things they can do to improve care today?
[00:31:30] Linda Burhansstipanov: Well, of course building trust, we talked about it earlier is the most important thing. The other thing is listen to the community. Go out, meet the community, find a couple of leaders people who will, are willing to help you. In a good way.
[00:31:46] Adam Walker: Yeah.
[00:31:46] Linda Burhansstipanov: You always want to have elders. You want to have somebody who’s a spiritual leader.
[00:31:51] You want to have somebody who’s a survivor and listen to what they tell you. And they may say, well, you know, that thing that you’re doing, that’s okay for white people, but that won’t work for us. And so they’ll let you know, even though an intervention has been successful in one group how it needs to be modified for the, this local community. And you find out what their other priorities are and you’re looking for a win-win situation and you’re looking for partnerships.
[00:32:18] And we want to have cross training when we do, when we’re making a new partner, and again, coming out to where we live getting a chance to see what we are as well as.
[00:32:29] You know, so many cancer centers say, well come in, we’ll show you. And isn’t this lovely? Yeah, it is. But come out to our area too. Yeah. You know, in that cross training and to help non-natives understand how to talk to our people.
[00:32:44] Is real important to learn how to pause after you ask a question, that you pause a long time when you’re waiting for that native man or woman to respond to you, and then when you’re setting up a new project, a breast cancer intervention project.
[00:33:01] Get more of our people involved with it. So we have a lot of American Indians, Alaska natives, that are in the Association for American Indian Physicians, A IP, or the Society for the Advancement of Chicanos and Native Americans in sciences. Ness are the American Indian, Alaska native Hawaiian caucus that’s recognized by the American Public Health Association.
[00:33:23] You can get some of these younger people involved in what the intervention is, and they’re going to provide inroads that can really save you a lot of time and money. If you’re doing a new intervention, community-based participatory research or community-based participatory approach is what’s.
[00:33:43] Preferred by all of our communities. Sometimes it has to be community driven. Example, when we started Native American Cancer Education for Survivors 30 years ago it’s community driven. We kept saying, do you want to partner? Do we want CBPR? And they said, no, we don’t have enough people who know the knowledge for cancer.
[00:34:05] So we want Native American cancer research to start it, and then we will critique it and we will change it.
[00:34:12] And you really have to look at some of the things that contribute to the lack of a good working relationship. Sometimes it’s the re receptionist.
[00:34:22] And other members of the staff that when you have an Indigenous person coming in, especially if they’re elder, it.
[00:34:30] English could be a second or third language for them. And there’s all different types of literacy. You can’t just hand a map to someone. They might not be able to understand how to read a map. Right. And some of those things, you know, will help. And again, the navigator helps to negotiate any of those types of things.
[00:34:52] Adam Walker: Yeah. Yeah. That’s great advice. Great advice. All right, Dr. B, last question. This has been. Fantastic. I really appreciate your time today. As we honor Native American Heritage Month, what message would you like to share with native communities about breast health?
[00:35:11] Linda Burhansstipanov: Yeah, well some messages are specific for screening, others are for survivors.
[00:35:16] For screening, you’ll have women who will talk about how painful the mammogram is. Sometimes that’s because our breast form differently than a lot of other groups. And we. Because of the obesity in our community, we can have fat deposits. If the glass panels are pushing down, they squeeze on fat deposits that hurt.
[00:35:40] And if they have cysts, they hurt. Tell the technician and take over the ER pain medication that you know works for you because not. Pain medication works better for some people than for others, and you have to use what’s important and ask your healthcare provider when you can have a mammogram.
[00:36:00] If it’s a CDC funded breast and cervical cancer early program, ask when the screening is offered. And keep in mind, we can reduce breast cancer risk, but we can’t prevent it yet. So regular mammograms are the way to take care of your health, and it’s a way to model. For other women in your community to make certain, they start their mammograms and they are compliant with how often they’re recommended.
[00:36:26] That’s real important. And I think a lot of our survivors say it best. Mary Lou Davis said, I think those mammograms are vital for getting an early diagnosis. Cindy Thompson said. Keep in constant touch with your body, get it checked out. Carolyn Schubert, because of my age and because my mother had been diagnosed with cancer, I routinely go for mammograms.
[00:36:49] So those are messages just from some of them, and they’re wonderful in what they do. We listen to the survivors. And for survivors, it’s the same message. You are not always going to feel the way you do right now as you’re going through treatment. Well, so. A lot of healthcare providers fail to inform the patient or the family that some symptoms like fatigue, pain, chemo, brain, it lasts for years after treatment has been completed.
[00:37:19] Adam Walker: Yeah.
[00:37:19] Linda Burhansstipanov: And people get so upset because they were not informed of that. And they think if they just take a nap, it will handle fatigue and it does not.
[00:37:30] Chemo brain, the men and women talk about how they literally could see fog raising slowly up when chemo brain was finally going on. Oh my god. I can think again.
[00:37:43] These are real conditions. Yeah. And people need to know they’re going to last a long time.
[00:37:48] And work with your patient navigator. And write down the questions that you or your family want answered. When the healthcare provider uses language that’s scientific, medical, or difficult to understand, ask them to explain what the words mean in every day.
[00:38:08] Words.
[00:38:09] Adam Walker: Yeah.
[00:38:09] Linda Burhansstipanov: And let the patient navigator advocate for simpler language on your behalf and gradually learn to advocate for yourself. And the navigator will help you do that. And another thing that’s very contrary to our cultures is learn how to ask for help.
[00:38:26] We have been raised that we help others in our family and in our community, but that we don’t ask for help.
[00:38:35] And we, again, we have a lot of survivors that are just amazing. Norma Staples said I appreciate my life more. Go to the doctor, get a checkup and pray a lot, because that’s what pulled me through. Let your family and let your friends help you. Keep going. Francis Johnson try to be brave and we got loved ones on earth.
[00:39:00] And try to encourage yourself to keep on going. Try to do what you did before you had your surgery. Do your crafts. Do your walks. Enjoy your humor now. So there’s so many different things that, that people will say and help them move forward in a good way.
[00:39:18] Adam Walker: Yeah. Well Dr. Burnoff, you are amazing.
[00:39:23] The work you’re doing is so important and I genuinely appreciate you taking the time to share all of these things with us today.
[00:39:31] Linda Burhansstipanov: I appreciate you inviting me and I think it’s wonderful that you acknowledge American Indian Heritage Month. So thank you. Our people appreciate this.
[00:39:41] Adam Walker: Thank you. Well, we appreciate you so much and again, and also thank you for your just decades of leadership in the insight today. Yeah. If you or someone you love need support navigating breast cancer from emotional support to help finding local resources or financial assistance, Komens Patient Care Center is here to help.
[00:40:02] Call 1 8 7 7 Go Komen or visit komen.org/patient care center. Thanks for joining us for another episode of the Komen Health Equity Revolution. Series. We’ll keep bringing you conversations that shine a light on the barriers to care and the people directly affected by them and working to break them down so that everyone has the chance for better breast health.
[00:40:32] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit Real Pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.