[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] This is Real Pink, a podcast conversation where we’re digging deep into breast cancer and the realities patients and survivors face every day. We’re talking openly and honestly about just how difficult breast cancer can be from being diagnosed to selecting the right treatment plan, to living day-to-day with metastatic breast cancer and life after treatment ends.
[00:00:39] Breast cancer affects everyone differently. African American and Black women are 40% more likely to die from breast cancer than white women. Biology and genes are driving factors, but we cannot overlook the fears and concerns women in these communities have when it comes to seeking medical care.
[00:00:57] Mistrust and bad experiences and deep rooted bias are all standing in the way of saving more lives from breast cancer. Today we’re joined by Jessica Williams, a leading and powerful voice in the Black community in South Florida, and Gil Zepeda, the development manager of Susan G Komen in Florida.
[00:01:15] Jessica and Gil just took part in an event that brought mobile mammography to an underserved neighborhood in South Florida. Jessica and Gil, thank you for being here today and to talk about the drivers and fears and concerns that prevent the Black community from seeking necessary healthcare. Jessica, if we’ll start introduce yourself to our listeners.
[00:01:36] Tell us why you’re so passionate about breast cancer and supporting your community. And then after that, Gil, we’d love to hear from you and about the work you’re doing in South Florida to make sure everyone has access to the care that they need.
[00:01:47] Jessica Williams: My name is Jessica Williams. I am the CEO of south promo.com, as well as I am this year’s executive chair of the South Florida Susan G.
[00:01:55] Komen Walk. Breast cancer plays a huge role in my life. It plays a huge role in my family. I’ve lost quite a few family members from my grandmother, aunts, cousins to breast cancer and various types of cancer. So to me early, early access to mammograms and knowing what your DNA is, knowing your genetics, that is important to me, and I feel like, especially being an African American woman and watching a lot of Black and brown people die from cancer, who could have probably had it avoided if they found out about it earlier.
[00:02:29] I feel like this is the importance of this organization and what we’re doing and why awareness is so important.
[00:02:36] Gil Zepeda: Thank my name is Gil Zepeda, and I am the Develop Manager here in South Florida for Susan G Komen . It is my pleasure to be on today to discuss this very important
[00:02:48] subject matter regarding how fears and some of the barriers, right? Some of the psychological barriers that are affecting the African American community and a lot of folks here in South Florida from not only you know, sort of getting tested, but also just looking into how breast cancer can affect them.
[00:03:07] And so I really just wanted to thank you for just the overall conversation today. And I wanted to start just by, by mentioning, you know, we’ve been having you know, these events, these mammogram events. All over the community, and I’m very proud of not only the work that we’ve been doing and how we’ve been able to break some of these barriers, but I think it’s important for us to also mention that there are a lot of folks that still have a lot of fear, right?
[00:03:30] Have a lot of sort of reservations about getting a mammogram. And so I wanted to talk to you a little bit about it today, Jessica, and see if you can give us some insight. And you can talk a little bit about not only your experience, but what you may think may be the reasons behind some women not being tested and not not getting a mammogram.
[00:03:51] Awesome. Okay. So one of the first things that I wanted to sort of attack is the barriers themselves, right? Is actually looking into what some of the fears may be. And so what do you think about that? What do you think may be some of the things that are holding women back? As far as anything that they may be afraid of or anything that just means having reservations about getting a mammogram.
[00:04:13] Jessica Williams: I think there are various things that play a role. I don’t, I can say fear is a piece of it, but it’s also access. It’s also availability. A lot of times Black and brown people as a whole, they have limited access to maybe doctors in their area. Where they live, where they work, maybe they can’t get off work.
[00:04:34] Sometimes, you know, just in regular life you get so busy. If it’s not in your face, you don’t think about it. A lot of times if breast cancer doesn’t really run through your family, you’re not really knowing anybody who is living with it or has died from it. You kind of just push it to the back of your mind, like, this can’t happen to me, so you’re not really worried about it.
[00:04:53] And I just think it’s the overall education and access that is a huge problem. And just like limited places to go. A lot of times, you know, it’s a stigma about Black and brown people who can take, they say that Black and brown people can take more pain than maybe their white counterparts. So if you go to a doctor, a lot of times it may take as a Black and brown person, you may have to continue finding new providers, new doctors to find out what’s wrong with you because they’re not going to test for it right off, as opposed to maybe their white counterpart that
[00:05:23] they may go in and run dozens of tests to find out what’s wrong. They’ll, you know, we found out in the Black community, a lot of times they just send you home saying nothing’s wrong. You have to go to another provider, another doctor, maybe three or four different doctors till you find out what’s really going on.
[00:05:37] And a lot of times it’s just them not deciding to do testing. Also, historically, just in the Black community, you know, Blacks were always used as, I guess you would say, testers in different studies. Like going back all the way to the Tuskegee Syphilis Study where they told us it was one thing and then they was forced, they were forcing sterilizations for Black people.
[00:05:59] So there’s just a lot of generational trauma in the Black community when it comes to Black people and healthcare.
[00:06:07] Gil Zepeda: I see. Yeah. And I can see that, right. That’s something that, that I think is discussed a lot and a lot of times we miss that it’s not only a lot of folks tend to think that the barriers are just something that’s physically not necessarily physically, but that’s sort of prevalent right now.
[00:06:22] And that’s coming from the environment from today’s day. And I think it’s important to address some of these barriers, right? Some of these sort of reservations come from a long time ago, come from things that have happened to the African American community you know for years,
[00:06:38] for decades. And this may be a reason, right? Why they are reluctant to go get a test, to get tested. I wanted to talk to you also just about what we did about it, right? About what we’re doing here in South Florida and why it was important for you to really work on this particular project to be able to bring mammograms to the community.
[00:07:00] What have you found has been the biggest sort of success as far as us bringing these mammograms? Vehicles and being able to provide not only the mammogram itself, but free mammograms to the women that need it within these communities.
[00:07:14] Jessica Williams: I think that I’ve seen, like I’m very proud of this initiative.
[00:07:18] Like this is something I’m so excited to stand behind. This is something that even years after, I’m no longer the chair, I’m no longer involved. I hope this is something that Susan G. Komen does, especially in this market because it’s needed as you’ve seen. So I think it’s been a couple of things.
[00:07:33] The people who are hosting these events in this community look like me. They are Black, they are brown. They are hitting those people who a lot of times don’t have insurance. Those people who do have insurance, but maybe they have low paying jobs so they don’t have the availability, the flexibility, the transportation, any of that to actually get to a location.
[00:07:53] We are going into predominantly low income neighborhoods and I guess you would say some are mid income, but mostly low income, and we’re reaching out to those people who normally wouldn’t be able to get mammograms. Like the last one we just did this past week, you know, in the city of Miami Gardens that area that we hit is a lower income area, but it was also targeted to a lot of the women who maybe work in like nightclubs and things like that, who don’t have that full insurance, who can’t afford the mammogram.
[00:08:23] But we were able to find sponsors to cover their mammograms. So these women who were over 40 who normally would not get a mammogram, who’ve never gotten a mammogram. They did. So I think just giving the access, because that’s one of the biggest things, access and knowing that the people who are doing it are people that they, that look like us and they can trust us.
[00:08:40] So there are people who are, you know, the commissioners of the neighborhoods, these influencers of the neighborhoods, these people who stand out and they’re really giving back in various ways throughout the neighborhoods. These are the same people hosting these events. So the community’s coming out because that’s that trust that’s there and they trust those people.
[00:08:57] So they’re coming out and they’re they’re feeling comfortable enough to do what they normally wouldn’t do, and it’s working because we’re finding women who need to be tested a little bit more, or who are being told they need to get a biopsy. So they’re finding all these quote unquote trouble cases that they would’ve never known about if we didn’t go to their neighborhood and give them this free access.
[00:09:18] Gil Zepeda: Absolutely no, I, and I totally, I echo that. I mean, for me, it has been eye-opening right. Of of the statistics because the folks from the mobile mammogram are not allowed to provide us with any names or any information because of HIPAA, but they can’t tell us how many folks were found per event, right.
[00:09:36] As far as that need biopsies. And it has been so eye-opening. It has been so, I’ve been taken aback by not only the fact that of every single event. We’ve had some multiple folks have had to have sort of, you know, seen for further testing and as, as sad as it is they have to go. It’s a huge home run that we were able to catch it.
[00:09:57] Right. And I and I, there’s no way that doesn’t escape. Some of us that have been really looking into how these events are really sort of affecting and looking and impacting, right, I should say, these neighborhoods as far as being able to bring women out. It has been great sort of story that some of these women were caught hopefully early enough so that we can save some lives, which has been the initiative from the start.
[00:10:25] You mentioned this past week, which I think was a, an amazing success. The event we had in Miami Gardens. It was just great to see not only that the event itself was completely booked with appointments before the event took place. But as soon as our partners from CBS Miami were able to get there and start reporting, we had women.
[00:10:46] I mean, we had two women that rode their bikes to the event. And that goes to what you’re saying, a lot of these folks don’t have what transportation? Lot of the folks don’t have the access that they need in order to properly get tested. And if it was an A for one, us having this event close to their home and close enough for them to be able to access the event by, by, by
[00:11:08] By just jumping on their bike and getting to the event, but also making sure that people know about what’s going on in their neighborhood. Right. And I thought that it was just a huge home run for us to be able to let that particular area of South Florida know that it was being done and that you know, women, if they did not have financial assistance or insurance, they could still get their mammogram.
[00:11:29] And it was amazing to see 80 women get tested that day. It was just a huge you know, home run for us. A huge goal that, that, I mean, I have never seen as far as our events and to know that many women got tested and and were able to know whether or not right, they needed further testing, I thought was great.
[00:11:50] And like you said, also being able to provide you know the overall comfort. I think is major. And I was talking to someone at one of our events which told me, you know, Gil, you know, I would’ve not come here had it not been for, you know, my favorite radio station mentioning it right, because, you know, you hear about things going on, but unless you hear from someone who you trust, like you are saying or someone who you have seen every day.
[00:12:15] Right. One of our events was at one of the churches in our community, and I think that there was a level of comfort, right? To some of the folks that were going there. Knowing I know that church very well. I know the folks that go there, I know this community, and I think it helped break a lot of those barriers.
[00:12:33] It helped break a lot of that fear, which I was just really happy about. Overall I wanted to sort of also ask you, I wanted go overall right far as. Of resources that we’re providing for the folks that are getting tested. What have you seen, right, or what have you heard had been some of the biggest issues with some of the women going to get tested?
[00:13:00] Jessica Williams: You mean who are going to get tested before we started offering this or?
[00:13:05] Gil Zepeda: Exactly from before, like what have you heard before? Had you ever had like friends of yours or anyone within your family tell you, you know what, Jessica? I just I don’t get tested or I haven’t been able to get tested for a, B, or C reasons.
[00:13:18] Jessica Williams: So, you know, first off, cost of living. Cost of living is higher than a lot. And even though cost of living went up people’s pay rates did not. So a lot of people don’t even really have insurance, not like they should. That’s the first part. And then you have the part where it’s the education.
[00:13:37] This is a pre a preventative measure. This is a preventative care situation. So mammograms are free annually. A lot of women don’t know that I was just blessed, well, blessed and cursed because again, breast cancer runs so major in my family that we’ve done the genetic testing. Because I knew what it was, I knew what breast cancer was at an early age because I saw my grandmother live with it and ultimately it defeated her.
[00:14:03] But I was always around her. I saw everything. So I knew that even pre me being 40 years old, I probably needed to start getting mammogram just in the fact her losing mostly all of her sisters to breast cancer and every single one of her siblings has had breast cancer. So again, that for me is something different.
[00:14:23] I know that for a lot of other people, it’s the access. Even people who we saw that came to get mammograms with us but didn’t go to their regular doctors, a lot of them didn’t have time. I got calls just because I posted like, oh my God, you know what? This coming to my neighborhood, I think I’m going to take a lunch.
[00:14:39] How long does it take? We’re offering mammograms in 15 minutes. Like you’re not going to go to your doctor’s office and have a mammogram in 15 minutes. And the reality, like most of our doctor offices aren’t near where we live. Like my doctor’s office is almost a good 30, 40 minute drive. So I know that if I’m going, I’m going to have to take three hours out of my day to do what I need to do.
[00:15:00] Most people don’t have that luxury. So knowing that we’re going to a community where they live, where they work, and literally you’re in and out 15 minutes at the very most, that’s almost unheard of. So with those, just those things alone, I feel like that’s why people weren’t going before. That’s why people were kind of hesitant to go, and people are fearful, like, I don’t know what it is.
[00:15:22] I, I don’t know if it makes them feel like, you know death is staring them in their face. Or maybe they’re just afraid of knowing. They’re afraid of the knowledge, but a lot of people are just afraid to know, and that’s not just with breast cancer. That’s with any type of illnesses. That’s like if someone’s having multiple headaches, they’re not, you know, a lot of people are afraid to go to the doctor, so they’re just going to keep taking Tylenol Ibuprofen, but they’re not going to actually go to the doctor to say, why am I getting these headaches all the time?
[00:15:48] This isn’t normal. They’re getting aches and pains. They’re going to go sit in the toe of Epsom salt, they’re going to rub some of these topical ointments on them. They’re not going to go to the doctor to say, Hey. What’s going on with me? And I think breast cancer is aligned with that. It’s the same people who even if they’re having regular sex, they may not go to the doctor and say, okay, I need to get tested for STDs.
[00:16:08] Something may feel a little funny down there. They’re still not going to go. I just think like the fear of finding out, the fear of knowing. And I think even if someone does get tested and or they’re afraid to get tested, they don’t think about it as oh my gosh, early prevention, I can, you know, get chemo.
[00:16:29] There’s all these other things that can help me. They just think of death because that’s what so many people, they lose the battle of death of breast cancer. So I just think that when it comes to it, people are fearful. People are fearful. People don’t have the money, they don’t have the access, they don’t have the knowledge.
[00:16:45] Gil Zepeda: Right, right. No I totally get that. One thing that, that, you know, someone did mention to me, and this is so true, right? Especially here in South Florida it’s very obvious. The women in our community the women that have to get tested and I should say people because men should get tested as well.
[00:17:00] But Mo most of all women in our community always put themselves second to their family, right? They always put themselves second to their job. They always put themselves second to whatever is going on in their world. And unfortunately, if women don’t put themselves first at some point regarding their health, they will continue to
[00:17:20] postpone and they’re going to continue to cancel and they’re going to continue to say, you know what, I’ll get it next month, or I’ll get texted in six months. Or, for right now I need to do all these things before I even make my appointment. And I think that these mamo, you know, mobile mammogram events are able to let you know exactly what you said.
[00:17:39] This is not only convenient for you as far as the finances are concerned, but it’s also convenient for you as far as you being able to do it in a timely manner where it’s not going to affect your whole entire day where you can come and get it. They accept all insurance, which I think is fantastic. The actual test, like you said
[00:17:56] is done in 10. So that’s very convenient for the, for those that are getting tested. And I myself find that, you know, the fact that it’s in their community, I think makes a huge deal. The fact that somebody’s saying, we’re 10 minutes away, or we’re 15 minutes away, come see us. It’s going to be something that you’re going to be able to do fast.
[00:18:14] It’s almost like they have almost no excuse right at that point to get tested, which I think is just absolutely fantastic. One of the things that I’m mostly proud of is the fact that Komen has been able to be there at these events to provide resources for women, right? Because Komen. Steps in as someone right after diagnosis.
[00:18:33] And so even though Komen is proud to be really present at these events and be able to provide our resources, what we really want women to know is say, Hey, listen, if you have any questions right after your test, if you have you know any kind of results where you need to get further testing and you have any questions.
[00:18:53] We want to know that the resources are here. Call our helpline at 1-877-GO-KOMEN. Give us a call whether it’s you, whether it’s a family member that has any questions regarding your results regarding what next steps should be. I love the fact that Komen is there to do that. And a lot of the women that are coming out from these tests have questions The moment they come out of the test, they have questions for you, and they say, oh, what should I do next?
[00:19:19] Or what, how long am I going to have to wait? And if I get a positive test, what are my next steps? And so giving them that helpline and giving them the resources from Susan G Komen that these folks need in order to bring some comfort in order to bring some education into what they need to do. And really honestly, right, empowering them.
[00:19:38] Empowering them with the right information so that they can make the right choices in their lives or they can talk to their families, or they’re able to really do what they can in order to save lives, I think has been one of the biggest pluses, right, for Komen. And it has been something that we really are very happy about as far as being able to provide that because as you know, some of these women have been tested positive and so I know that they’re going need the helpline.
[00:20:02] I know they’re going to need the advice and the help from our organization. And so not only letting folks know that it’s important for them to get tested, but also that Komen is here for them, I think has been a huge deal. The fact that we are present and the fact that we are there for these women when they are coming into their mammogram and when they’re leaving and they’re able to know that this non-for-profit
[00:20:25] is here in my community to help me and my family should I need it? Should I need any advice or any resources that we are the ones that are here. Stepping up I think has been a huge deal for us, and it’s been a huge success. So you know, not only am I grateful right, overall for what you and our partners have been doing, but I’m, we are at Komen, very grateful overall for the opportunity to be present and to be able to provide that information for
[00:20:51] these women, it’s vital and it’s so important to be able to give someone some comfort and give someone some empowerment when they’re going through something like this. And we are very happy that you were able to not only make it happen, but that you included us into the overall and to have us present as well.
[00:21:09] So thank you very much for that.
[00:21:11] Jessica Williams: You are welcome. And you know, the coolest thing about it and it’s kind of weird, but I remember when we first started talking about me possibly coming on board as the executive chair for this walk. And I remember working with another organization and my biggest reservation was like
[00:21:28] what does Susan G Komen really do for this community? And I remember you like running down a list of different, you know, programs and offerings, but I told you I wasn’t aware of all that they offer. The only thing that I know is what most people knew is there’s this big annual walk that brings thousands of people together.
[00:21:46] But what happens after what happens before? And I think that, you know, it made a believer in me. And, you know, and you know, where I was when we first started, and not only a believer in me, but also a believer in those around me and different community le leaders different elected officials it just made a believer in them because now they’re able to provide services to their community that were always kind of left away, or people only really focus on breast cancer as a whole in October.
[00:22:15] So the fact that we’re able to do this throughout the year, you know, pre October, post October, you know, after the walk, these are still things that are going on. I think that’s probably the best part of all is because now instead of you just having a name and a brand that people recognize, again, just for the walk, now people are, people can actually say no.
[00:22:34] I know they do this. I’ve, you know, I’ve been a witness of this. I’ve received services because of this. If it wasn’t for them, I wouldn’t even know that I needed to have a biopsy or that I may have had breast cancer and things like that. So I just want to say kudos to you as well, because you made me a believer as well as other people who I know were kind of along the same thought process with me.
[00:22:54] Because even when we reached out to elected officials elected, it kind of was the same thing. So the fact that we’re bringing this to their community, it was like, okay, well, you know, let’s see. Let’s do it. And then everybody we’ve done it with so far has extremely happy to know, you know, that they’re providing some type of change in what’s going on.
[00:23:12] Gil Zepeda: One of my biggest pleasures has been showing South Florida the fact that Susan G. Komen is here for them. The fact that we do work hyper locally, and the fact that we do work to really help those that are going through breast cancer. And a lot of times, you know, like you said, a lot times. In this platform, these events have been giving me and the organization a huge avenue in which to communicate with the community, but to let them know how we work with those that are going through breast cancer.
[00:23:41] How is it that Susan G. Komen steps in, how is it that we provide our services, and most of all, why it’s so important for those that can to support our organization. That really has been my biggest success regarding this whole project. Not only breaking barriers, but seeing women come in that would’ve never, right.
[00:24:01] Been able to get their mammogram, be able to get a mammogram, and to those of them that need our help and need our empowerment, the fact that we’ve been there for them and we’ve had this opportunity to show our community. Susan G. Komen is here for you. We’re here for your families. We’re not only here to have this community right, which really supports those that are going through breast cancer, but those that may have lost someone to breast cancer.
[00:24:23] But we’re here for those that are going through it. And it has been just amazing to be able to not only talk about it with our media partners, but to be able to talk about it with our community, with members of the community to let them know, if you didn’t know what Susan G. Komen does, this is what we do and this is how we’re doing it here in South Florida.
[00:24:40] And it has been just amazing to be able to do that. So thank you. It has been just a great opportunity.
[00:24:46] Adam Walker: Well, I want, I wanted to thank both of you for joining us, you know, on the show today. I think this is a really important conversation and I wanted to see if we could just finish with one last practical question to each of you which is if there’s someone that wants to take the next steps to support their health journey, they may be unsure about their access to healthcare.
[00:25:07] What’s the next step they can take?
[00:25:09] Gil Zepeda: So the best thing they can do is definitely call our helpline. A helpline will give them a great not only number of resources, but great advice as to what their next steps should be. The helpline, 1-877-GO-KOMEN was put together for that reason, for patient care.
[00:25:26] And so that if you need, that only patient care. But if you’re a family member of somebody who’s going through this and you have questions and you say, my wife was just diagnosed with breast cancer, what can we do as a family? What can I do as her husband? They can call that helpline and they will give them a a great amount of resources and advice to be able to do.
[00:25:48] And then they’re here in the community. They can definitely reach out to me and they can reach out to those of us that are here in Komen to be able to give them those resources that are available to them.
[00:25:57] Adam Walker: It’s fantastic. Jessica, any final thoughts from you?
[00:26:00] Jessica Williams: My biggest thing is I just want to keep spreading the word.
[00:26:03] I want people in both Black and brown communities to feel comfortable getting tested and, you know, prevention is key. You know, awareness is key. So we just want to make sure that we keep driving that message and keep bringing these amazing events to local communities that normally wouldn’t have this, so that people who normally wouldn’t get these mammograms.
[00:26:25] Get them and find out if there’s anything wrong so they can prepare and get taken care of early as opposed to finding out before it’s too late.
[00:26:32] Adam Walker: So yeah, it’s fantastic. Well, absolutely Jessica, Gil, thank you so much for joining us on the show. Thank you for the work that you’re doing. It’s so important.
[00:26:41] You’re making a huge impact and yeah. I just thank you so much for being here.
[00:26:46] Jessica Williams: Thank you, Adam, for having us.
[00:26:48] Gil Zepeda: Thank you. Thank you very much, Adam. It’s been a pleasure. Thank you.
[00:26:55] Adam Walker: 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.