[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. Each month, we invite in patients, community organizations, health care partners, researchers and policy advocates to discuss strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.
[00:00:38] Multiple communities face unique barriers to breast health care, including lack of access to quality care, financial constraints and cultural differences. Susan G. Komen’s Patient Care Center works to address these barriers by providing a variety of services and resources, such as patient navigation, financial assistance and culturally sensitive care. Komen patient navigator Mariana Garza joins us today to discuss the specific breast health inequities these communities face in accessing breast health care, as well as the ways that the Patient Care Center is helping to break down these barriers.
[00:01:14] Mariana, welcome to the show.
[00:01:16] Mariana Garza: Thank you so much. Thank you for having me.
[00:01:19] Adam Walker: I’m really excited to talk to you about this. This is one of my favorite series that we do on the podcast because it’s just so important. So let’s start with a bit about the Susan G Komen Patient Care Center. Tell us about that and about its mission.
[00:01:33] Mariana Garza: Of course. So here at Susan G Komen Patient Care Center, basically, what we do is, you know, provide support, provide knowledge, advocacy, and we empower individuals facing challenges in their breast cancer journey. We are mostly a bridge between all of the complexities that exist in the diagnosis, treatment, and survivorship and we do that with compassion. We do it with expertise.
[00:02:06] What we try to do in our mission is to save lives by addressing the most critical needs of our communities right now and to make sure that people have the access they need to achieve health equity and to help those with breast cancer get the unique support they need. All of this is done through the Patient Care Center and through patient navigation.
[00:02:28] So we identify and we reduce barriers. We provide accessibility and we try to reduce cancer related distress. Everything that we do is free. So Komen’s navigators offer free personalized support to patients. But not only patients, right? Also caregivers, family members. We include education. We provide emotional support, financial assistance.
[00:02:55] We help them have actual access to care and many other resources that might be needed along the way. We work in a telehealth model, which makes patient support very accessible to those who may not have navigation or who may not have any local resources. So that is what we do. Yeah.
[00:03:17] Adam Walker: I love that. Alright, so I wonder if next, could you talk a little bit about what some of the biggest barriers are. To breast healthcare in some of these communities.
[00:03:27] Mariana Garza: Yeah. We see so many barriers related to breast healthcare. First of all, the healthcare system can be extremely daunting and it can be further complicated for those communities that have been historically marginalized, right? Or for people living with metastatic breast breast cancer, which is stage four.
[00:03:51] Many of the patients that we serve face an economic or financial barrier that can delay care, disrupt treatment. It’s more than half. It’s 52 percent of the patients that we serve. And out of that 52%… 84 their income is at or below 200 percent of the federal poverty level.
[00:04:16] So 84 percent of those. So it’s a big barrier. And for those, you have the ones, well, the communities, you know, that struggle with their day to day living expenses, those who struggle to afford their medical bills, or those who struggle to meet both.
[00:04:37] We have the barrier of health insurance itself, right? Those patients who do have health insurance, who struggle to afford or meet their high deductibles, who struggle to pay those copays that need to be presented up front before any kind of procedure or doctors, you know, meeting, whatever. The coinsurance fees can be so high. We serve some patients that are underinsured and lack adequate coverage. There are others that are in the famous donut hole for Medicare prescription coverage and we navigate the uninsured population, which is a big one as well.
[00:05:21] With that one comes another barrier, which is immigration status. This will immediately disqualify anyone from any kind of insurance. And the only options for them are charity programs, which are not available, you know, everywhere in the country.
[00:05:37] It’s in specific areas. And this will for sure delay screening it. Will delay a diagnosis. It will delay treatment. And all of this brings a fear factor, which is also such a big barrier. We know it is language and literacy level, which brings lack of understanding and making uninformed decisions. If you are not understanding and comprehending what they are trying to say, it will bring, you know, not the best decisions for somebody’s care.
[00:06:10] We see the barrier of housing and lodging, which sounds similar, but it’s not. So housing, we see it as local, right? Those that struggle to pay the rent, those that struggle to pay their mortgage, those who are facing eviction, those who are on a waiting list for, you know, Section 8 housing programs.
[00:06:30] And we also noted lodging problems like barrier. If you have to travel for your treatment, you have to stay somewhere. That can be expensive and it can be a huge barrier.
[00:06:42] Same thing with transportation, right? If you don’t have a way of getting to your appointment, it will delay everything and the access to care will definitely be impacted. It’s a big one. And mental health. It’s such, there’s such a big stigma around mental health. It should not be optional. But when that is not navigated the right way, it can definitely be a big barrier to care.
[00:07:12] Adam Walker: Wow. I, I had not considered many of those things. and there, I mean, you just listed two to three times the number of barriers that I would have anticipated you listing, which is why we’re, I guess, having this conversation, of course.
[00:07:26] But I really appreciate you bringing light to all of those. So how does the Patient Care Center work to address some of the unique needs of some of these different communities that face breast health inequities like, you know, the black, latino, lgbtq plus and other rural communities.
[00:07:41] Mariana Garza: Right. So our main priority is just to make sure that no one faces breast cancer alone. We know the lack of access is just one of the key drivers to health inequities. And this is why we have made our helpline accessible to anyone in the US that needs us. And it could be by phone. It could be by email.
[00:08:03] So, immediately upon reaching out to us they will be connected to a patient navigator who will then stay with them for as long as they need. We, as navigators, provide personalized care. Because we were very aware that everyone reaching out has a different need, right? Every story is completely different and it is very, very important that we tailor those needs and that we provide individualized support that is just as unique as they are and as their stories are and as their cases are.
[00:08:38] So once this connection with a patient navigator is done, the team will spend the time necessary to ensure that all of their questions are answered and that they have the access to the resources that they need. And this could take one phone call, or it could take six months of support… a year for those that have multiple barriers, right? And they have to be unfolded one by one.
[00:09:06] It’s very important for us to identify these barriers and to put them in priority. Every case is different. So for somebody, the priority could be getting all of the paperwork to be approved by a charity program. For another one it could be… let’s coordinate transportation. Let’s find a free program. Let’s find, you know… It’s just that it’s just different and it’s very important that we figure out which one is the one that needs to be prioritized the most.
[00:09:41] All of the information that we try to give to these patients are… it’s culturally relevant. It’s responsive educational information and resources. The team is just as diverse as the people we serve. I mean, research has shown. Yeah. I mean, research has shown, right, that people and we… there’s a better outcome when you work with someone who shares your lived experience.
[00:10:17] So the team is very diverse. We provide tools, we provide resources, we try to empower these patients to take an active role in their treatment plan. We hold their hands, but sometimes they need to push and that is our role too. You can do this. You need to do this. Advocacy, self advocacy and empower them just for them to be able to make an informed decision about their care.
[00:10:44] We give them a list, for example, the Komen’s “questions to ask the doctor.” If they need educational materials that is evidence based, we can provide that and that could be tailored to that specific community. For example, we work in partnership, like I said, to identify those barriers. And if there’s a language barrier, for example, we will make sure that the resources that we provide are in that specific language. And we will make sure that that person has a translator at their medical appointment. Another one, the citizenship status or the distrust of the medical system that many of our black patients often experience, it brings fear. It delays getting care. So by showing them how to self advocate and educating them is a way that we make sure that this has a better outcome, right?
[00:11:49] Adam Walker: Wow. That’s amazing. So many of those things again, so many things you mentioned are not things that I would have even thought about. And so, I love those services. So I’m curious, do you, do you have, could you share a story about a patient that’s been helped by the Patient Care Center? Do you have one in mind?
[00:12:09] Mariana Garza: Yeah, there are so many stories to tell, right? There are some that actually stay with us. I have a story of a patient that I navigated.
[00:12:20] She, she reached out to Komen’s Patient Care Center through the helpline. This patient, she was, well, she is in her early 40s. She does not have a legal status and she is uninsured. Diagnosed with breast cancer. When she got to me, she had already undergone, surgery and chemo. So, she still needed to do radiation therapy.
[00:12:45] She needed 40 rounds of radiation. And, because she didn’t have any health insurance, she needed to come up with $4,000 upfront to start radiation. So she had been part of a charity program by a specific entity. And then for radiation, she was referred to a third party, right, that was asking for those 4,000 dollars.
[00:13:08] This radiation center also needed an updated ultrasound and mammogram before beginning her treatment and this patient did not have a way to cover those $4,000 or the cost for the ultrasound and the mammogram. So I spoke to her during the intake. We, well, I identified that the patient was in need of assistance with prosthetics and bras, because she had had a single mastectomy and that came up in intake that it highly affected her.
[00:13:43] She was interested in fertility preservation resources. She was newly married, still in her early forties, but very aware that her time was running out regarding fertility, right? And she was in need of emotional support. So I was able to work with her for a long time. We really developed our relationship. And I leveraged several of Komen’s programs. I got her over to the screening and diagnostic program. She applied and she was approved and she was giving a voucher by Komen, where she was able to get her ultrasound on her mammogram for free. No cost. She had already received Komen’s financial assistance funds.
[00:14:28] So she, she had already got that funding before she got to me, but I referred her to other organizations. We submitted so many applications for financial assistance. One of them took so much advocating and phone calls on my end. But at the end, she was awarded a little bit over two thousand dollars. That went directly to the treatment center to help her offset the cost of her radiation therapy.
[00:14:55] We were very happy when we got that call. We… I connected her to organizations and they sent her bras and prosthetics at her house as well for free. We did so much research regarding fertility preservation and we discussed all of her options and I shared information, right, and resources regarding emotional support.
[00:15:20] And resources, domestic abuse, just in case he were to need that. So that is a good story of success that I have. That is very… I have deep in my heart.
[00:15:32] Adam Walker: I love that. I love that man. So fortunate that she was able to get in touch with you. You were able to, to help her with all those things. That’s so great.
[00:15:41] That’s so great. Well, so, so what advice would you, would you give to people that are in communities that faced breast health inequities? And they’re concerned about their breast health and they need support. What advice do you have for them?
[00:15:53] Mariana Garza: Well, my recommendation to anyone who is needing to discuss options or has questions about their best health or has a breast cancer diagnosis would be to contact, Komen’s Patient Care Center, or ask if a social worker, a case manager or a navigator is available through their care center.
[00:16:14] No matter where, where they fall within the breast continuum of care. If it’s a screening or diagnostics, or, you know, all through survivorship, as well as those who are living with metastatic breast cancer. I mean, no one should ever need to face any health concern or diagnosis alone. There’s a lot of fear, there’s a lot of shame, there’s a lot of unknown that can be daunting.
[00:16:42] And nearly… 100 percent of the people say they received the help they needed from a patient navigator. So I would definitely recommend them to reach out. It takes a village and we’re here just to help everybody through their breast cancer journey.
[00:17:05] Adam Walker: That’s right. And, and if someone did want to reach out, how would they go about doing that?
[00:17:09] Mariana Garza: Very easy. We can, they can reach out through the helpline, which is 1-877-465 6636. or via email, which is helpline@komen.org. Or they can also go through the website, which is komen.org. With a K.
[00:17:33] Adam Walker: That’s fantastic. Well, Mariana, I genuinely appreciate the work that you’re doing, that you do. It takes a very special person to be able to help people in the way that you do. And I just so admire it. Thank you for, for all the good work you’re doing. Thank you for helping so many people. And thank you so much for joining us on the show today.
[00:17:53] Mariana Garza: Thank you so much for having me. It was great. Thank you.
[00:17:58] Adam Walker: Thank you for joining another episode of the Komen Health Equity Revolution podcast series. We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity — for all. To learn more about health equity at Komen, please visit https://komen.org/HealthEquity.
[00:18:24] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.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.