Breast Cancer Disparities, with The Witness Project

Co-host Natasha Allard interviews First Lady Charmaine Geeter and First Lady Narseary Harris from the National Witness Project, along with Dr. Ermelinda Bonaccio from Roswell Park, on their efforts to overcome breast cancer screening disparities among African American women in Western New York and on racial discrimination in healthcare setting.

Ermelinda Bonaccio, MD

Dr. Bonaccio serves as the Chair of Diagnostic Radiology at Roswell Park Comprehensive Cancer Center and has been a breast imager for 24 years.

First Lady Charmaine Geeter and First Lady Narseary Harris

As first ladies of their church, First Lady Geeter and First Lady Harris are passionate about their advocacy work with The National Witness Project. The goal of the National Witness Project program is to increase cancer awareness and cancer screening uptake in the African American community.

Hello and welcome to Buffalo HealthCast, a podcast by students, faculty and staff of the University at Buffalo School of Public Health and Health Professions. We’re your co-hosts, Tia Palermo, Jessica Kruger, Schuyler Lawson, and in this podcast, we cover topics related to health inequity here in Buffalo, around the US and globally. In this first semester of the podcast, we're taking a deeper look at racism and health. We'll be talking to experts around the US as well as individuals here on campus and in the Buffalo community who are working to remove inequities to improve population, health and well-being. You'll hear from practitioners, researchers, students and faculty from other universities who have made positive changes to improve health, equity and inclusion.

Natasha: Welcome to Buffalo HealthCast. I'm Natasha Allard, a Ph.D. student in the Department of Community Health and Health Behavior here at the University at Buffalo. I'm joined today by an amazing group of women I have had the honor of working with in my post role at Roswell Park Comprehensive Cancer Center. I've seen firsthand how passionate they are about reducing health inequities, especially among Black women here in Western New York. So I knew we had to have them on the podcast to discuss. Today, we have First Lady Naseary Harris and First Lady Charmaine Geeter, both from the National Witness Project and Dr. Ermelinda Bonaccio, Chair of Diagnostic Radiology at Roswell Park. It is so wonderful having you all here today. So let's start with some introductions. First Lady Harris, can you tell us a little bit about yourself and your role as a first lady?

First Lady Harris: My role with the National Witness Project is chairperson for FLOW, which is the first ladies of western New York. So I do a lot of work with recruitment, educational programs, navigation and getting the word out to our community about the importance of early detection of breast and cervical and colorectal cancers.

Natasha: That's wonderful. Thank you so much. And for anybody who isn't aware, can you explain what a first lady is and why we use that title for you?

First Lady Harris: Yes, it simply means that we are the pastor's wife. That's how we are addressed in our congregations.

Natasha: Wonderful. Very important role. First Lady Geeter, can you tell us a little bit about your role and who you are?

First Lady Geeter: Hi, my name is Charmaine Geeter. I'm also a pastor's wife. I work alongside with First Lady Narseary Harris. She brought me in to the National Witness Project, working alongside of her with the first ladies of Western New York. I do the same thing. I help her recruit. I help her give seminars on helping to educate women on getting their breast examinations, make sure that they know what to do on how to give their self breast examinations, make sure they get their checkups. Also educating, also educating men on making sure to let them know that they, too, can get breast cancer, colorectal cancer, HPV. We do whatever we can to educate. Our community is wonderful.

Natasha: It's quite the heavy task you have taken on, but it's so wonderful. And the work you do is so important. Dr. Bonaccio, tell us a little bit about yourself and your role at Wrestle Power to thank you for having me on.

Dr. Bonaccio: So I am the chair of diagnostic imaging at Roswell Park. But the reason I'm here today is also for the past twenty four years, I practiced as a breast imager, reading mammograms, doing any of the images, guided biopsies, MRI, ultrasound. So that's my clinical role, although I've taken on this administrative role and screening mammography has been a big part of my mission here and bringing that to Roswell.

Natasha: Wonderful. Thank you so much. So as many of us know, October is Breast Cancer Awareness Month, and one of the most critically important aspects of awareness is understanding how a disease affects different communities. So today we will address disparities in both breast cancer and breast cancer screening, particularly in the African-American community. So, First Lady Harris, I'm going to ask you to dig a little deeper into what the witness project is and why this exists.

First Lady Harris: So I really got involved when I was introduced to the Witness Project by Detric Johnson, who is now actually the national director. What really caught my attention is the fact that they were addressing all of the concerns about African-American women, why they weren't getting mammograms, why they weren't going in for their pap smears. But what really caught my attention was that they were actually coming into the community, coming to where these women are and stressing the importance of early detection. That just really got my attention after finding two breast tumors of my own. There was nobody in my life to navigate that for me. There was nobody that I could talk to and I was reluctant to talk about it. It was like the it was like sharing that information was taboo or, you know, I know I wasn't contagious, but it was just the fear of the unknown about breast cancer and then having friends who actually had breast cancer and died. So it was the fear factor. It was. Not knowing, not having somebody to talk to about it, the friends that I had who actually had breast cancer, they were reluctant to talk about it. I guess it just happened to be because of being a pastor's wife, they were more safe to talk to me about it. So this organization happened. I thought, this is amazing. And what an opportunity to share this information with other women and help navigate them and guide them through the process that I felt so afraid of and intimidated by.

Natasha: That is wonderful. I really appreciate you sharing your own personal story and your passion just shines right through. So we really thank you for sharing that. First Lady Geeter, Do you have anything you want to add about why the witness project is important to you or the work you do?

First Lady Geeter: One thing that was so amazing. The one thing that, we use a term in the church, was meeting people at the point of their need. It was like we come to you. We don't wait for people to come to us. So church is a big gathering place. It's like the family is already there. And so it's almost like a place of trust. And the one thing that I find out, find out about our culture, we don't tend to share. So we don't tend to find out if my grandmother or my auntie may have cancer. So that is a big factor to know what is in your blood line. So if grandma may have had cancer, then it's good to know that I need to have a mammogram earlier than 40. So education is the key. So when we can bring these educational seminars or educational talks to the church, to the place where they already are, then that is the key. The key is to educate so that we will know these things so that we could do better. So I just felt like it was just phenomenal to know that we can bring these things to where they are. So like we say, we'll go to your family reunions. We will go to your apartment complexes. We will go to wherever you are. We will bring these things to you.

Natasha: That is amazing. I love your point about knowing your own family history and your personal risk. And you both have just made such a great point about going to where women are or where people are for screening. I think that's such a wonderful approach. So let's transition a little to understanding disparities within screening for breast cancer. Many different studies over the years have found different racial or ethnic and socioeconomic disparities in actually utilizing screening mammography. This has changed over the years. There's been some great headway is made, but of course, our work is never done. So we're going to spend a few minutes first diving into what breast cancer screening is and why it's important. So, Dr. Bonaccio, we see studies and health communications use terms and phrases like mammography, annual mammograms, breast cancer screening somewhat interchangeably and different ones in different places. But in an effort here today to potentially overcome health literacy barriers, can you boil down what those words mean?

Dr. Bonaccio: So a mammogram is a type of X-ray. It's a very low dose x ray of the breast. And in general, when we talk about screening for breast cancer, we are talking about mammography. And it gets very confusing because 3D mammography or tomosynthesis or other terms that you might hear, and those are essentially a newer, improved mammogram. So we typically talk about screening mammography when we're talking about screening for breast cancer, because that is the test that has been proven in multiple different types of studies, randomized controlled studies, case control studies over the years to lower your risk of dying from breast cancer, up to 40 percent decrease in mortality with women when women are screened with mammography. There are other screening tests for breast cancer usually reserved for women who are at high risk for breast cancer, such as screening breast MRI or for women who have dense breast tissue such as screening ultrasound. The key part of screening is a test we do on a regular basis in this case annually to look for cancer that's not symptomatic. So we're trying to find a breast cancer before you can feel it. That is the ultimate goal of screening so that we have better chance. preventing death from breast cancer.

Natasha: That was a great explanation, it makes it a lot easier to grasp on to, I think. Can you briefly tell us what are the current mammography guidelines? So who is supposed to get one and when?

Dr. Bonaccio: So for average risk, women, women who do not have a family history or any of the mutations in mammography should start at age 40. And we follow NCCN guidelines, which is the National Comprehensive Cancer Network that we belong to as Roswell Park. So annual screening mammography beginning at age 40. We follow those guidelines because frankly, that saves the most lives. But as First Lady Geeter referred to, it is important to know your family history and women who have a strong family history of breast cancer or women who are known to be mutation carriers, then we will start screening mammography at a younger age and potentially do one of those other screening tests that we were I just mentioned.

Natasha: Thank you, First Lady Harris and First Lady Geeter. Do the women you meet in your work with witness project typically know these guidelines?

Natasha: Do they know they're supposed to have a mammogram but just maybe aren't getting one or do they not even know? Is the awareness not there yet about the age you're supposed to get screened?

First Lady Harris: So typically, I think the I think the awareness may be there in a lot of cases. I think the trust, but I think the fear factor. I think the lack of insurance sometimes and if there has been a family member who had it, the fear of finding out that they might have it, and that is a death sentence. So I think knowing that mammography is helpful, the importance of it sometimes, I think is not there due to the lack of education about what why it's important and the possibility of early detection not being a death sentence for you. So it's a combination of things. But I think by and large, mammography, the word if you say what is a mammogram and who gets it, that knowledge is there, I think more often than not. But the navigation of getting one, the importance of knowing that could possibly save your life is not always understood in its entirety.

Natasha: Got it. That makes a lot of sense.

First Lady Geeter: I also think that sometimes they get mixed signals. I think lately I've also been hearing that a woman should get their mammograms at 50. I have heard that. I've actually heard it advertised on TV. I also don't think that they always know that, that if there's a history of breast cancer, that they should get a mammogram earlier. So sometimes I think that sometimes there is different things that are being said and that causes even more of a distrust when everybody not always saying the same thing. And that's where you get that distrust -- when they hear several different things.

Natasha: Very eye-opening I could definitely see that being an issue.

Dr. Bonaccio: And the family history piece, I think is very important. More recent data has been showing that there appears to be an increased incidence in the BRCA and mutations in African-American women. So knowing that family history and potentially if it's significant, getting tested, I think is really key to potentially starting younger and doing more than an annual screening mammogram, potentially having an MRI. So that information is really very important as well.

Natasha: It's interesting. First Lady Harris, you mentioned the fear associated with if a family member had or died of breast cancer. I was just listening to a different podcast, Freakonomics episode called The Ostrich Effect. And they were talking about how specifically in African-American women, but many other women as well. Studies have shown that having a close loved one who has breast cancer or even dies of it, kind of just the opposite of what you would think. It makes you not want to get a mammogram. Can you explain that a little bit?

First Lady Harris: Because, again, we go back to education and navigation. If people when they hear that, they automatically assume. So remember early on when I said how I got involved with that, with the witness project, I found two tumors in my own body, in my own breast.

The first thing that you think is, oh, my gosh, this is a death sentence. So when a family member is diagnosed with breast cancer and they die, people tend to…My experience has been they don't want to know they got it, if they got it, they're going to die. So let me just live my life and just the way it is, because I'm going to die of breast cancer. So there is a fear of the unknown. There's an assumption that if a family member dies with breast cancer, that's what's going to happen to them. So they just kind of accept it as this is the way it's going to be, which again, is why it is so important. The work of the National Witness Project, getting to those women, getting to those younger women, giving them the gift, giving them knowledge about breast feeding. We know we've learned through the different opportunities of being educated, even through Roswell and the opportunities that they've given us, understanding the importance of early detection, understanding how breast feeding in our and our community changes the risks of breast cancer. So all of these things are important and helping them to navigate the system, understanding why it's important for you to get a mammogram, understanding that because your loved one died of cancer does not mean it's a death sentence to you if it's detected early.

But the fear is, if it happened to Betsy, if it happened to Grandma June, I'm going to die, too.

So why bother?

Dr. Bonaccio: I so agree with First Lady Harris about the importance of navigation and education. And it's not just for the screening piece of it, because a lot of the data surrounding survival disparities in breast cancer for African-American women is actually even after the mammogram gaps in care following up on an abnormal mammogram, making sure that they receive adequate treatment and complete all the treatment. And and when you read it, how we can improve this now, it always seems to come back to navigation, culturally competent education, exactly what you're saying. I mean, what the work the witness project does.

Natasha: Great points. I was actually just going to bring up a statistic from the American Cancer Society that Black women are 40 percent more likely to die of breast cancer than white women and are twice as likely to die if they're over 50. So I'm really seeing that statistic kind of come to life, as you all are discussing, because you have Dr. Bonaccio, who has some of these medical facts about the importance of early detection, and then First Lady Harris and First Lady Geeter—your passion is really to get those facts to your communities and make sure people

know that early detection means breast cancer doesn't have to be a death sentence. First Lady Geeter, you've brought up mistrust a few times. Do you want to talk about that a little more? Can you explain that a little more, what you see?

First Lady Geeter: Yes, our community has a lot of mistrust and it's very we're very apprehensive about taking part in studies. And I think that if we were able to get our community to take part in studies, we could probably gain and know a lot more. But because of things that have happened to our African-American community in the past, it is so very hard to get us to take part in studies because as we know, that has not always been the case about African-Americans having breast cancer or dying in breast cancer. We were not always the leading and death of breast cancer. If we could just build the trust in our African-American community, I think we could see a change in those numbers. So we're just hoping through the National Witness Project that we can start to build trust in the African-American community to take part in studies so that we can start to see these numbers change.

Natasha: Thank you for sharing that. Here at UB we have a health disparities class within the School of Public Health. And one of the things we discuss is how race is often acknowledged as something that contributes to disparities when in reality racism should be discussed and some of these historical and current contextual reasons for this. So would you agree that that's something you're seeing with the women you work with?

First Lady Geeter: Absolutely.

Natasha: Absolutely. So I want to circle back a little. Everybody has brought up navigation a few times. I'm looking right now, it's a Susan G. Komen list of some various barriers that are current and tangible that they have identified existing for mammography. So I'm just going to quickly run through some of these and then I invite anyone to weigh in, and if you have seen these as a barrier and how different organizations or policies that you have worked with are trying to overcome these. And we've mentioned a few already. So we have cost concerns or lack of adequate insurance, lack of having a primary provider or an OBGYN to make referrals, different health literacy or educational issues, child care issues, not being able to take sick leave or miss work, fear of bad news, fear of a painful mammogram, cultural or language differences, and then a lack of education, which we have discussed greatly. So what does the witness project do for some of these maybe like insurance or missing work or transportation?

First Lady Harris: So as far as transportation, we provided it free of cost, free of cost.

If there is no insurance, we help them to get insurance, literally walk them through the process. If they need help with child care, we make that happen for them, free, free of charge. Everything that we do through the project, it is zero cost to that family. We will educate them. If there are five people, we literally will do a witness project, educational program for a family. You've got your aunt, your uncle, your aunts, uncles, your grandma, your nieces and nephews, your children. We will do a live program for you. And now, because of COVID, we will even do it virtually. If they don't have access to Zoom, we use our own personal zoom to bring them in, to educate them and to navigate them. We will literally hold their hands and take them to an appointment, make the appointment and take them to the appointment. If there is a fear of that they have a bad experience with a primary care, we will assist them with finding a primary care doctor. If there is a breakdown, if somebody drops the ball with their OBGYN, we are there to navigate and help them find someone that they will feel comfortable with. So we try to eliminate whatever the barrier is. Once it's brought to us at once, it's brought to our attention. We will seek out a way to eliminate that barrier.

Natasha: So you really do it all. Full suite of services.

First Lady Harris: One stop.

Dr. Bonaccio: Just a couple of things to add as far as the cost concerns, even separate from our partnership with Witness, we're actually able in New York State, we have Cancer Services which will cover a mammogram for uninsured and underinsured women. So if you call for an appointment at Roswell and you don't have insurance, we can connect you with cancer services program, which is a wonderful program. And and for those that are insured in New York State, there's not even a copay for a mammogram, for an annual screening mammogram. So because those 10, 15, 20 copays can add up. So I think that's one thing to keep in mind. And you don't necessarily need a primary care doctor to come and have a mammogram here. So I, I think that in general, we're trying to remove as many barriers as we can for screening.

Natasha: That's so wonderful. Actually, I was just going to ask this. Can you explain briefly how is Roswell connected to Witness Project?

Dr. Bonaccio: Oh, my gosh, we have such a wonderful long history with Witness project. So Deb Erwin, who was she's a Ph.D. who was the co-founder of Witness Project in Arkansas, was recruited by Roswell to come here and then set up that program here. So it's been a long partnership, but when we opened up our community screening program in twenty sixteen,

our partnership grew and that we now navigate women to Roswell for their screening mammogram. We will have designated screening days for when this project this summer in the weekdays and summer on Saturdays to again improve access, decrease barriers. But it really has been a long and wonderful partnership.

First Lady Harris: And we certainly appreciate that. We appreciate that. And the fact that they have partnered with us for the One-stop with Roswell has been a true blessing so that we can eliminate the fears. Don't forget women that we were working with, they had a fear of going to Roswell because the only thing they thought when they thought Roswell cancer, that's where people go who have cancer and what this partnership has done, And to partner with the witness project, has changed a lot of that concern with the women in our community. Now, we have women when they find out that they can go to Roswell for a mammogram. They're eager to do it, they want to do it, and especially because of the partnership that Roswell has with the National Witness Project, see our community trust the witness project. They trust us. And so when we say, oh, yes, you can go to Roswell, we will take you there. And then Roswell’s commitment to our community, to the people that are underserved, who don't have protection, who do face a lot of fear and a lot of rejection when it comes to the medical arena. They are helping to eliminate some of those fears and doubts about where they can go. And are they going to be treated with respect? It's a big difference. And so we're grateful, the witness project. We're grateful for our partnership with Roswell and this beautiful doctor she has…

Let me tell you let me just tell you, when we went there for this last event for Channel four and Roswell, that partnership, she told me, she says, Lady Harris, I would be so honored to be a part of your presentations that you do with your congregations and with the people that you are going out to do the educational programs with, to share some more of the information and to dispel a lot of more of their doubts and fears about cancer and about Roswell and and getting more educational from that in, you know what I mean, to put a friendly face to the medical side of it all. So we are truly grateful to her. She's an amazing partner.

Dr. Bonaccio: Thank you so much for the kind words and I mean every one of them. I'm really looking forward to presenting at any of the programs where it would work for me to join. I really I'm really looking forward to that.

Natasha: So this is wonderful. Community partnerships like this really are encouraging and inspiring. And I love to see groups like this get together and share their passions, especially because … kind of the flip side of this. I have another American Cancer Society stat that a third of African-American women have reported experiencing racial discrimination at a health provider. First Lady Geeter and First Lady Harris, is this something you are aware of? Have you seen or heard from women?

First Lady Geeter: I have heard on different occasions where they feel like they have been treated differently, don't feel comfortable. So they just they just do not go to a doctor.

They choose not to. And it's just not a good feeling. And I mean me myself and this happened to me where I feel like I have had to change to a different doctor, especially now when I've gotten to more of a mature age where my doctors have retired and I have to go to choose another doctor. And I don't like the way I have been made to feel and have been on the hunt for a doctor. It's very disheartening. And and, you know, you know, the feeling is just something that you feel in your gut. And it’s there, it is just there.

First Lady Harris: You know, I had an experience as well with one of our friends who went to go to her OBGYN and then with, I think, her primary care as well, an African-American sister, she told the doctor that she found a lump and wanted them to check for her to to check for it. And they didn't do it. They told her, oh, you're fine. I couldn't believe I was actually hearing her say that. She went back again and she said, I have a lump in my breast. And the doctor still refused to examine her. She went back a third time and said, I need you to examine me. I feel a lump in my breast. So finally she said, Can I show you where it is? And the doctor says to her, according to her pointed out point, the area where it is, she did that. And then the doctor touched her breast and found that there was a tumor there. When I heard that, it almost brought me to tears because this happens a lot more frequently than we even know, because instead of saying something about it, the the person, the woman, she just clams up and just says, I'm not going to be bothered. Why bother? And so that's very, very disheartening. And this young lady, this happened to her about a month ago. I'm not talking about something that happened last year. I'm not talking about something that happened a couple of years ago. This happened 2021. And it happens.

Natasha: First Lady Geeter and First Lady Harris. I really appreciate you sharing those really personal and honestly horrifying stories. And I'm sorry, and I thank you for bringing awareness to that and for speaking out.

First Lady Geeter: I have had an experience where I had a lump in my breast and it ended up being fatty tissue and I actually had it removed. And when I when I had it removed, I was told that it was a possibility that it would come back and and it came back and it was and the removal was very it was very painful. And it did come back. And I went back to the doctor because it came back so quick. And and his response to me was, it's because of the kinds of food that you all eat. And I, I mean, when I talk about it tears of well, up in my eyes. Tears welled up in my eyes and I asked, did I ever give you a list of the food that I eat? I said, You don't know what I eat. And I was insulted.

First Lady Harris: I guess so.

First Lady Geeter: And I never have gone back and and, you know, and it's still there and hasn’t gotten any bigger. But at this point, if I ever have to have it removed, I will search out for another doctor because I was just so insulted because I felt like he was telling me it’s the food that African Americans eat that is causing this fatty tissue.

Natasha: That is heartbreaking and unacceptable. And I honestly don't have words. I have chill as you're telling that story. It's truly an atrocity. It's truly an atrocity. When we look at addressing racism and discrimination, it's hard to even know where to start. But, Dr. Bonaccio, what role do health care providers, at a bare minimum, play in addressing racism and discrimination in a medical setting?

Dr. Bonaccio: Well, first, I'm so sad to hear these stories, but unfortunately, I'm not surprised to hear these stories. I mean, I think with any problem, right. First thing we have to do is acknowledge it and talk about it. And that's why I was so glad we're having this conversation.

And I do feel like that we're having more of these conversations over the past two years in the medical community. And that is going to be a huge piece of addressing it. It is going to take time. But we talked a lot about educating African-American women to have a mammogram. But we as medical care providers have to educate ourselves to learn how to address these issues,

to teach young physicians and practicing physicians and providers about unconscious bias, about culturally competent conversations. I mean, we have a lot of work to do. But I am heartened, as disheartening as these stories were, I am heartened by the fact that we're talking about it more so than I've been practicing for twenty four years. And the intensity of the conversation that we're now having in the medical community brings me hope that we will then start moving towards solutions.

Natasha: Absolutely. Talking about this is so important.

Dr. Bonaccio: First Lady Geeter’s point about it's not just clinical trials, but we need research in this areas as well. I was sort of as I knew this podcast was coming, was was doing some research and focus group research is important, too. There was one study that showed, for example, that African-American women require more education once they're diagnosed with breast cancer, more information than potentially on non African-American women do. And it makes sense to me, right. If you're not trusting of the system, if you're worried about racism, you're probably going to have more questions in the information. So getting that information out to providers I think will help to as we get more research in this area.

Natasha: Thank you. As we come to a close today, I'm going to ask each of you to just share one final message that you would want to send either to women of breast cancer screening age or this podcast is listened to by a lot of public health students and faculty and professionals. So either people in the field or women who need to get mammograms, what is a final Take-Home message you want to send? First Lady Harris, we can start with you.

First Lady Harris: OK, so what I would like to be able to take home with them is the importance.

Again, we can talk about early detection, how important it is to get that mammogram, how vitally important it is to talk about it in your family. It is so important. And if we could just get that message out there for the screening of breast cancer early, I think that it would help to change all. So the statistics will change greatly, I think if we could just get that information out, the education out there about early detection.

Natasha: Thank you, Dr. Panopto. I'll have you go next and then we'll close with First Lady Geeter.

Dr. Bonaccio: One message I always like to get out when I'm have the opportunity is that most women who develop breast cancer actually don't have a family history of breast cancer. So just to remind people that our biggest risk factor is being a woman so that even if you don't have a family history, you should have your annual mammograms starting at age 40. But I like to say that along with the fact that it is still so important to know your family history for the reasons we've talked about earlier, so that potentially you can get screened at a younger age and with other studies in addition to the mammogram. But that's an important take home message for me.

First Lady Geeter: Mine is always if you're proactive now, you won't have to be reactive later.

Natasha: I love that. It's powerful, succinct, and it sums up everything we've talked about. Well, everyone, I truly appreciate your time. This conversation was powerful and insightful and I really think it was valuable. And I hope, I know, that everyone listening to this podcast will feel the same. So thank you very much. And I hope everybody has a wonderful rest of your day.

First Lady Harris: Thank you for having us.

Dr. Bonaccio: It's such a pleasure working with both of you. Every time I have the opportunity.

Natasha: This was wonderful. Everyone, I really, really appreciate it.

This has been another episode of Buffalo HealthCast. Tune in next time to hear more about health equity in Buffalo, the US and around the globe.

Buffalo HealthCast

Breast Cancer Disparities, with The Witness Project

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