Gennesaret Free Clinic website: www.gennesaret.org
Gennesaret Free Clinic appointment line: 800-696-1511
Pink-4-Ever Ending Disparities website: www.pink-4-ever-org
Pink-4-Ever phone number: 317-682-4944
[00:00:00] Adam Walker: Support for the Real Pink Podcast comes from Lilly. For more than 50 years, Lilly has been dedicated to delivering life-changing medicines and support to people living with cancer and those who care for them. Lilly is determined to build on this heritage and continue making life better for all those affected by cancer around the world.
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.
The breast health inequities that black women in the US experience are a social imperative that calls for collective action. Black women are about 40% more likely to die from breast cancer than white women. To help address these inequities in Indianapolis, a group of community organizations recently came together to host a discussion about community-based resources that service breast cancer patients; to identify resource gaps and discuss how they can work collectively to ensure black women have access to the breast healthcare and support they need in their community. Lisa Hayes, the director of Women’s Help of Health at Gennesaret Free Clinic and Executive Director of Pink-4-Ever Ending Disparities is here today to tell us about this initiative and how this community is coming together to collectively use their resources to support the women in their area. This is amazing. Lisa, welcome to the show!
[00:01:34] Lisa Hayes: Thank you, Adam.
[00:01:35] Adam Walker: I love seeing groups of people come together to address disparities. It’s so important. I’m so glad we’re having this conversation. Let’s start today by telling our listeners a little about you, your background, your current role, and maybe a little bit about how you ended up here.
[00:01:52] Lisa Hayes: Sure. So I am just as of May, the 1st now a 16 year breast cancer survivor of triple negative breast cancer. So that’s pretty awesome. So I kind of gotten into the breast health, breast advocacy space as a result my my personal experience. Prior to that time, I was not in this space at all. I had practiced law here in Indianapolis and had done some other things, but at the time of my diagnosis with breast cancer, I was in between jobs, which was like the worst time to be diagnosed with breast cancer bebecause I did not have health insurance. And that was a pretty harrowing experience initially, but through community resources and just support from family.
I got through that and actually, I mean, my, the fact that I was able to access care was significant that was affordable. For me and my family. And so through that experience, I really kind of pivoted from my previous career and really wanted to give back to the community to be able to help women who might find themselves in a similar situation as I did, and to get them connected with resources, make sure that they were supported through whether it was breast cancer or some other kind of health issue.
I was looking to do that. But through, just some networking connections and honestly, I really think it was meant to be, this was God ordained work. I truly believe bebecause I about six, eight weeks after I finished my own treatment, what is, which had lasted al almost a year. I was connected with Gennesaret Free Clinic, found out about the awesome work that they were doing, and specifically they were looking for someone to lead their women’s health initiative, which focused on breast and cervical cancer. So I thought that might be a good fit. They did not think so initially they were kind of like, why would you want to come work for a nonprofit? And kind of in a whole different area than what you’ve worked before. But really was not so different bebecause some of my previous work, even in the legal field, I had dealt with clients and circumstances of people who face barriers, people who are in challenging socioeconomic situations.
So in terms of the demographic of the people that we were serving, I had familiarity with that. But really the biggest thing, again, was my own experience as a breast cancer now survivor who encountered that diagnosis at a really critical point in the life of my family and in me personally. So that’s where I landed at Gennesaret and the story continues.
[00:04:47] Adam Walker: Oh, I love that. Well, I mean, it sounds like this really changed the trajectory of your life many ways. And it sounds like you’re doing some amazing work that we’re gonna keep talking about. So, so let’s keep diving in. So, What do you consider the most important healthcare that you do and what’s your motivation? I assume there’s some motivation of your own, from your own experience, but what else motivates you?
[00:05:11] Lisa Hayes: Certainly that’s very motivating and to answer specifically what I think is the most important work that I do is, it’s really twofold. One is the patient navigation aspect of what I do. As I alluded to earlier I just found it very important to be able to connect people to affordable resources. Resources that were timely, healthcare, that is of high quality and that is delivered in a sensitive culturally sensitive manner as well as sensitivity to all the other things that go into. You know, managing a serious illness, whether that be breast cancer or any other illness or ailment. So I really think that community health workers and navigators play a very critical role in the healthcare system and in being very patient-centered and making sure that patients get what they need.
So I did not start out at Gennesaret Free Clinic with that background. But like I said, my motivation really was to try to connect people who with resources within the community bebecause that’s what had happened in my experience, and that’s really what got me through my own breast cancer experience. So I started out with that in mind. But as I became, you more ingrained with Gennesaret and working in the community, I really saw that need to not just tell people about resources, but to help guide them and actually connect them from one place to the next. And so, I went through a community health worker certification, I did a certification to become a patient navigator. And that is so key to my work. But also as we continue to talk, I think the work for all community organizations in collaboration, and I can expand more on that later, but my, I did want to mention here, my, my second motivation actually is my own two daughters. I actually have three children, a two daughters and a son. But now that I’ve had my experience, they are, they now carry that family history of breast cancer, but not just from me on their paternal side they have a paternal grandmother as well as four paternal aunts who have all been diagnosed with breast cancer. Two of them are deceased. In addition to that, they have two, three paternal uncles who have been diagnosed with prostate cancer, which can increase your risk for breast cancer. So with that kind of family health history, my work is important in terms of their future, and sort I want to leave a legacy for them that the work that I did perhaps will help them not have to deal with this disease.
[00:08:07] Adam Walker: Yeah. And a legacy for more than just them, right?
[00:08:11] Lisa Hayes: Oh, definitely.
[00:08:11] Adam Walker: For so many people. So that’s amazing. So, part of the conversation we’re here to have is about the breast health inequities that black women face. Can you tell us like, what some of those inequities are and kind of kind of give us an overview.
[00:08:25] Lisa Hayes: Yes. So I think as you mentioned in your intro, black women have a higher mortality rate from breast cancer. We’re about 40, 41% more likely to die from breast cancer. In addition to that, black women are diagnosed at a younger age in comparison to white women. We are also diagnosed at a later stage of the disease. And then also diagnosed with more aggressive forms of breast cancer, such as triple negative which I was diagnosed with. So it’s not, it’s like from the beginning, there are four factors that make black breast cancer really look different than breast cancer in other ethnicities. But also, it almost just begs the question, what are we gonna do about that? How can we better address the way that breast cancer impacts black women?
[00:09:17] Adam Walker: That’s right. I mean, knowing these things is fine, but we have to do something about these things.
[00:09:23] Lisa Hayes: Exactly.
[00:09:23] Adam Walker: And that’s what you’re doing. That’s what you’re doing.
[00:09:25] Lisa Hayes: Yes.
[00:09:25] Adam Walker: So on that note, you know, recently, Susan G. Komen and Lilly invited some leaders into your community to have a conversation bringing the Indianapolis breast health community closer together to address the inequities. So tell me about this initiatives and what happened that day.
[00:09:41] Lisa Hayes: Yeah it was really a great coming together and it was something that has been tried in the past with some success, but never sustained. The impetus for me was not, was through my work with Gennesaret Free Clinic, but also our service executive director of Pink-4-Ever Ending Disparities. Those two organizations have been partners for many years. And we have other partnerships and it really enhances our work to be able to leverage resources, to share information to, you know, to give patients all the help that they need.
There’s not one organization that can do that. And so with Pink 4-ever, we’ve always been very collaborative in our work and have been happy to have Gennesaret Free Clinic a as a partner. But we also see that even between those organizations and there have been others, you know, over the years, but, in an informal way, it works great, but if you could just formalize that some, we could be even stronger. So that was one of the things that drove me to want to be involved in this effort to bring these organizations together.
[00:10:52] Adam Walker: That’s great. And so you came together that day. And that was great, and I understand, but that’s not the end of the story. So what’s happened since then and what is the community committed to doing together?
[00:11:03] Lisa Hayes: Yeah. So, so that, yes, it was not just that day. I do want to share a little bit about what happened that day. There were about, I believe, 20 or so organizations that came, all organizations that provide breast health services of some kind within the Indianapolis community even before we came together that day, Lilly, along with my help and they help us, some others did some groundwork where we reached out to all those organizations, told them about what we were doing, but also asked them to share with us some key information about what services does your organization provide. How do women and families best contact your organization? Who are the key people that should be listed? And so we started what we were calling a resource guide for all those community contacts. And so a large part of the day that we first came together was about going over that information. We gave everybody an opportunity to share about their organization, the key people in their organization that we should know about and how to maintain contact with them.
So out of that meeting, there was a strong consensus that, hey, this is good. We should continue these kind of conversations, but also figure out a way where we can really make a difference together collectively. Doing some work. So, out of that, we did commit to having a follow-up meeting so that we could really walk through what could this kind of collaboration look like. What could move us from talking about it to, like you said before, action? I found it to be very successful meeting almost immediately bebecause right after that meeting probably in the week after that, one of the participants had a situation with a patient. Where she was looking for a particular resource. Her organization did not provide that resource. But bebecause she had been to that meeting and kind of knew what, or other organizations at least new contact people, she simply sent an email to four or five of us. And said, “Remember I met you at the meeting, I’m looking for this resource just based upon the information you shared at the meeting; I’m thinking you might be able to help me.” And there was immediate response to her from all, everybody that she reached out to. And bebecause of that, she was able to connect this woman with the resources that she needed, pretty much immediately. Whereas if that had not happened, she probably would’ve been taken a lot of time to, you know, look online, search out things, call people, not reach the right person.
But she simply sent an email, which probably took five minutes or less, and within minutes, Had great leads on a solution that eventually worked for the patient. So that was already a great outcome. But seeing that just in the first week after that meeting was a, again, just a lesson for us that this is how this should work.
[00:14:03] Adam Walker: Yeah.
[00:14:04] Lisa Hayes: Right. That if we have these kind of connections, if we have relationships that we can really help patients in a more timely way, and also make sure that they get, they’re getting the best resource to meet their need.
[00:14:17] Adam Walker: That’s so important. You mean it’s, it reminds me of. Just the importance of networking in life in general. And when we are networked, when we’re connected, we’re able to help so many more people so much more quickly.
[00:14:29] Lisa Hayes: Absolutely. We use the term networking, but I like to think of it more about, you know, relationship building.
[00:14:37] Adam Walker: That’s right.
[00:14:37] Lisa Hayes: Because it really is about that- sort of with networking, you kind of have this vision of, you know, you go somewhere, you meet people, you get a card, or probably not even a print a card anymore you, you put their contact information in your phone and then you go on your way. But one of the things that we talked about at the initial meeting and then in the follow up meeting was the importance of what we call a warm handoff.
[00:15:00] Adam Walker: That’s right.
[00:15:01] Lisa Hayes: And I’ll talk about that a little bit, because this is something that Gennesaret Free Clinic has embraced for many years and as I continue my work with Pink 4-ever, we’ve embraced the same concept where when you’re working with a patient and you’ve done what you can do, you don’t have, either you don’t have the resources or you don’t have a need that’s not just sort of in your wheelhouse.
But at Gennesaret Free Clinic, at Pink 4-Ever, what we try to do is find that resource but make a warm handoff to that resource, that patient, to that resource. So it’s not simply handing the patient a brochure or, you know, handing them a card that says, call this number. It’s going that extra step that’s really about patient navigation saying, let me call my direct contact for you, let me make sure that they can provide this help that you need. Let me make sure that you have that contact person’s name or sort of what the process is for accessing those resources. So it’s a very warm handoff that it’s not left to the patient to walk out. And then you’re wondering, did they follow up on that?
Did they call, yeah. Did they reach anybody? So warm handoff, that’s our mantra for Gennesaret and Pink 4-Ever and now for this collaborative. So that’s one of the things we’re gonna be focusing on in the coming months, is how do we put in place systems and protocols so that at least between our organizations, we’re having warm handoffs from patients?
[00:16:31] Adam Walker: I love that. And you’re right, it’s not network, it’s relationships and it’s warm handoffs because it’s really about caring for patients, and that’s what matters the most, right?
[00:16:40] Lisa Hayes: Exactly
[00:16:41] Adam Walker: And so it’s, there’s no territories. It’s just caring for patients. And I love that.
[00:16:44] Lisa Hayes: Yes. Oh, I love what you said there too, about territories. Which I think is important to bring up anytime you have, you know, a coalition or a collaborative, You know, there’s always that risk or that fear that, you know, people or organizations are gonna become territorial.
[00:17:01] Adam Walker: Yeah.
[00:17:01] Lisa Hayes: And that’s really the challenge to overcome. But if we really look at the big picture, the vision is how can we best help patients? And in this instance, black women have better breast cancer outcomes. We got to put the, that territorialism aside.
[00:17:17] Adam Walker: That’s right.
[00:17:18] Lisa Hayes: To aside, know, what our own agendas might be, but really focus on how can we collectively serve these patients, these women.
[00:17:28] Adam Walker: Yeah. That’s right. That’s right. So, so let’s let’s assume other people might want to do this too. What advice do you have for clinics or organizations in other communities that might want to mirror this collaborative approach?
[00:17:40] Lisa Hayes: I really think it is the first step is to have the drive to do it, to have it, it has to be an intentional effort. This isn’t something that just sort of happens, you know, organically. You really, you have to be intentional about reaching out to other organizations. Intentional about sort of setting aside boundaries or territories like you’re mentioning.
[00:18:02] Adam Walker: Yeah.
[00:18:02] Lisa Hayes: Or personal agendas or organizational agendas and really be intentional about, we want to see where there are places where we can partner. We want to see where there are places where we could do warm handoffs. We want to see where there are places where we can leverage resources. I work for two non-for-profits and not, they’re not huge non-for-profits. Yeah. And so for us, you know, our partnerships and our relationships is really what sustains us.
[00:18:28] Adam Walker: Yeah.
[00:18:29] Lisa Hayes: But the beauty of that is, is yes, sustaining us, but it’s giving such great care to community members and patients and their families. Because, you know, they could walk into Gennesaret they could walk into Pink 4-Ever and we could do everything that we could do for them, but there may still be needs.
[00:18:46] Adam Walker: Yeah.
[00:18:46] Lisa Hayes: But we’re not saying “We’re done. Good luck!” No, we’re saying “We’ve done what we can. I want to introduce you to this organization and this person and what they can pick up and assist.” It’s almost like a relay race I’m thinking about. That’s just the visual I had in my mind.
[00:19:03] Adam Walker: Yeah, I love that!
[00:19:04] Lisa Hayes: You know, we’re not real fast. We’re gonna do all this. We’re gonna put in all this effort, and then once we. You know, finish what we doing. We’re gonna do that warm, we’re handing off the baton warmly.
[00:19:15] Adam Walker: Yeah, that’s right. That next organization that’s what it’s about. That’s what, and that’s what helps the patient the most. So, yeah.
[00:19:20] Lisa Hayes: So it has to be the will. Yeah. And it, there has to be a commitment by the participating organizations that yes, this is a priority. Priority enough that we’re gonna allow staff members to spend some time doing the kinds of, whether that, that be in meetings or in between meetings, doing the work that’s really necessary to make these partnerships and collaborations worthwhile.
[00:19:45] Adam Walker: That’s right. That’s right. It takes the will and takes the commitment behind it. I love that. I love that. Okay, so, so last question. What advice do you have for women who are listening that may be newly diagnosed or feeling in over their heads, they don’t know where to turn for care, or maybe they don’t know what resources exist?
[00:20:03] Lisa Hayes: Well, first of all, of course, I’m gonna say contact Gennesaret Free Clinic or contact Pink-4-Ever Ending Disparities, I’m there, but if nobody else is, will help, I’m here to tell you I will help, but now I have sort of behind me or beside me, that’s a better word, you know, access to all these other organizations that stand willing to help. So, you know, making that contact and really it’s about, you know, one of the primary purposes behind this whole collaborative effort is the resource guide that I’ve talked about. So, you know, eventually that woman that is feeling overwhelmed or is recently diagnosed, if they could touch one of those organizations that’s gonna put them in touch with, this whole collaborative.
So, but, if there is somebody listening now and you’re at that step, I say contact Gennesaret at Gennesaret.org and I’m sure within this podcast they’ll give some contact information. The same thing for Pink-4-Ever Ending Disparities is pink-4-forever.org. We will certainly, if we cannot help you, we will direct you to someone, or somebody, something that can help.
[00:21:15] Adam Walker: Yeah, that’s right. That’s right. And of course there’s a lot of resources @komen.org as well, so-
[00:21:19] Lisa Hayes: Exactly.
[00:21:20] Adam Walker: Happy to have people go there as well for help. So, Lisa your story is inspiring. Your collaborative approach is just so important and I love your focus on patients and the warm handoffs to make sure that they get the best care they possibly can. I cannot thank you enough for joining us on the show today. Thank you so much for sharing your story.
[00:21:39] Lisa Hayes: Thank you for having me and a warm handoff to the weekend.
Thanks to Lilly for supporting the Real Pink Podcast. To learn more about the Komen Patient Navigation Program and other efforts to achieve health equity, visit komen.org/healthequity.
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 @AJWalker or on my blog adamjwalker.com.