We Will Overcome: Zip Codes and Access to Care

Maimah Karmo: Hi everyone. I’m Maimah Karmo, President and Founder of Tigerlily Foundation, and a 16-year breast cancer survivor. I am so blessed to be in this space today with all of you, to fellowship and to share stories, and to be empowered as we navigate this breast cancer journey.

So, a bit about me. I learned I had breast cancer at 32 years old. I found a tumor at 31 and was told that I could not have breast cancer. That I was too young. To come back in my 40s. The lump kept growing. I had to push for a mammogram. And they kept saying, “You’re too young. Come back when you’re older.” But I pushed with that mammogram, and I got it, and it came back clean. And the doctor said, “I told you; you couldn’t have breast cancer. You’re too young. Come back when you’re older. But you asked for the mammogram, and it came back clean.”

And I said, “You know what? This lump wasn’t here last month. I want it out of my body. So I want to get a biopsy.” And I had to push for the biopsy for over six months. And so it took me almost a year to get the biopsy done. And it turns out, I had triple-negative breast cancer, the kind that’s most aggressive in Black women, and until today, is not treatable by cancer in the early stages. And so, my being alive today, being given a five-year wait of survival – I’m here 16 years later – is a miracle and a blessing, and I’m honored to serve.

Graphic: Panel 1 Zip Codes and Access to Care

Maimah Karmo: I want to have our panelists join us, Dr. Yamile Molina, who’s a scholar and activist, join us now on the screen. And Danesha Lewis as well, who’s a President and Founder of the Minority White Coat Foundation. Yamile and Danesha, please join us now to have this powerful conversation. How are you both doing today or tonight, rather?

Danesha Lewis: Doing well, and yourself?

Maimah Karmo: I’m blessed to be here. I’m blessed to be alive. I’m blessed to be breathing and to be amongst other women who are making a difference amongst communities of color, who are underserved, and who need to have better access to quality care.

So, speaking about access, we know that, well, first of all, do you all want to share a bit about your background and what you do before we jump into the conversation? Dr. Molina first.

Dr. Molina: Sure. Buenas noches. I’m really grateful and honored by the opportunity and thank you so much again to the Tigerlily Foundation and all of the others who have been organizing this. I am the Associate Director of Community Outreach and Engagement at the University of Illinois Cancer Center, as well as an Associate Professor at the UIC, and an Associate Director of Community Engaged Research at Mile Square Health Center, which is an FQHC in the Chicagoland area.

And I want to say I’m really grateful and thank you for your story. I got interested and involved in breast cancer advocacy research and the scholarship around how resilient our underserved communities are because my aunt was diagnosed before the age of 40 as well with breast cancer. And at that point in time, I actually learned three or four cousins had been diagnosed with breast cancer and had died in Cuba, where we were from, without any knowledge. So that spurred me and has always inspired me to just keep going and really recognize and understand survivors as the recipients who become the resources and the next steps to change where we are as a community and as a nation.

Maimah Karmo: And thanks for all you do. You’re appreciated. Danesha?

Dr. Molina: Hi everyone and thank you for having me as well. I work for Rush Medical College, and I’m currently a medical student education coordinator, but I have my hands in a lot of different things. I’m a founder of a foundation called the Minority White Coat Foundation. Our mission is to increase minority healthcare professions, professionals in the healthcare professions, all of them. And so we work to do that and mentor students and provide scholarships, and any type of help and support that they can use to help with their journey.

I’m also the Ministry Lead of New Lives Healthcare Ministry, and so I have a lot of desire to advocate for the health disparities that we see. The importance of having faith-based groups, communities, and support groups.

Maimah Karmo: Mm-hmm (affirmative).

Dr. Molina: This is really something that I hope to help impact and can help bridge the gap when it comes to healthcare access and closing the health disparities. I’m currently also finishing my PhD at Rush, and my focus is on health disparities. My research right now is on COVID vaccine hesitancy, but I’m looking at a lot of different things to try to close those gaps. So I’m happy to be here, and I’m glad to be a part of the conversation.

Maimah Karmo: Yeah – no, it’s wonderful. The first time I shared my story was in a church. And so, it’s wonderful to be 16 years later, sharing this story on this platform, and your stories as well.

So let’s get into it. The first question is, how does where you live impact your access to healthcare? And we can start with Danesha.

Dr. Molina: Yeah. So the first thing I think about is how redlining really became an issue and has geared and steered how we look at access. And for those who don’t know what “redlining” is, it started back in the 1920s in the Great Depression, where they would literally take a map of communities and draw a red line to gear people towards – those that are lower income – into certain neighborhoods and certain zip codes. And so, I think about how that’s such an impact because of the resources that exist, or the lack thereof, the healthcare access that’s not there.

And so, we just think about who’s impacted the most. A lot of minority populations, Blacks for sure, are, unfortunately,, disproportionately affected because they don’t have food or healthcare around in their neighborhoods. And so, a lot of these things, especially environmental-

Maimah Karmo: And hospitals, right?

Danesha Lewis: Or hospitals, right, access to hospitals. And so we think about how there’s nothing around, and so the environment that’s there, they’re putting factories in those neighborhoods, and that’s affecting their health outcomes. And we wonder why lower-age cancer is showing up, and it could be as little as the pollution that’s in the air. And so I think about how that’s just the start of it, really segregating the communities and the zip codes, and how that’s impacting what we’re doing now for health, and affecting health disparities.

Maimah Karmo: Yeah. What are your thoughts, Yamile?

Dr. Molina: Absolutely. And thank you so much, Danesha, for setting the larger tone on this. I would say, directly in line with redlining and just the systemic forces that have really forced communities apart and groups apart to cause these disparities. One of the ways that this has really worked, especially in terms of access to care, is where those facilities are, those hospitals, as you mentioned. And it’s interesting because there are resources available for underserved communities. For example, HRSA has this designation as a medically underserved area or medically underserved population. And that allows you or affords you access to safety net clinics for your low-cost vaccination. A number of resources that are specifically available and targeted at underserved communities are reserved for them. Yet not all eligible communities are designated because you have to apply to be designated.

And so, I would also throw out there that not only are there systemic procedures that have historically limited the claim of resources to deal with everyone’s equitable access to care, but also, there is not extensive knowledge, I would say, for various reasons, as to how we can get resources in our communities, and I’ll just throw out there in terms of Chicago. So, when we think about these designated areas, for example, between 1984 and 2008, there were about 46 communities who were able to get the status. Would get FQHCs. Would get community health clinics into their neighborhoods. And seven of those communities, while eligible, were not designated at that point in time. And relative to the community areas that did have that designation, which had over a hundred, say, genetic clinics, those seven communities had 15. So this is how important – zip code really matters in terms of impacting that access.

Maimah Karmo: Yeah. So if I’m somebody in Chicago, who’s living in a community that is underserved, and I am having food insecurity – there are only fast food restaurants, and not enough of the Whole Foods or other – whatever. Maybe the water and the soil are polluted, so I can’t plant healthy fruits and vegetables. Maybe the nearest hospital is not too close to where I live, and I don’t have a car. And maybe, I work an hourly wage job, I can’t leave to go to appointments, and I don’t have daycare. And there are all these things that are barriers, and we are all working to help create a framework for that. But what kind of resources should be in place for people individually to overcome these barriers and systemically?

Danesha Lewis: Yeah. I think about just starting as small as the organization I’ve created. I did this because of the lack of resources that exist. I grew up on the west side of Chicago in Austin, and it’s one of our underserved representative communities. And so here I am, going into healthcare, and there’s not – that is a food desert. I grew up around having to travel to near suburbs just to get healthy food options and activities growing up. And I just think about it, I didn’t have any mentors in my neighborhood. I had no one around.

And so, just creating resources like that, as far as educationally, but even just small resources as adding Whole Foods stores. I know in Englewood, they put a Whole Foods there. Just some small thing where people can have access. And the next issue is, are they able to afford it? But we’ve got to take one step at a time. And so, the Minority White Coat Foundation, again, it’s for us to support them; starting as small as high school and pipelining them into being able to have more professionals that look like us. And that’s a resource, at least, that I intended to start. So we can start somewhere, right? We can take baby steps.

Maimah Karmo: I think what you’re doing is so important. Because, when I first got diagnosed, I saw nobody who looked like me, who was my age, who had my disease type/stage, and I felt so lost.

Danesha Lewis: Yeah.

Maimah Karmo: And I was literally lying in bed thinking I have five years to live. I have no one to talk to who’s been through this. And I was like, God’s shown me how to make a difference, and he said to begin Tigerlily. I’m like, I can’t begin a foundation. I’m in chemo. He said, “You can, and you will.” And I did. I think if we don’t see what we want, we have to create it. We can’t say, “Who’s going to fix the problem?” If we don’t show up and do it, then who then? And if not now, then when?

And thank God I did. Now we’re 16 years out. And there are so many women we reach across the country, and I say, “I wish I knew you when I was in treatment,” or “I’m glad I found you.” And I think what you’re doing is amazing. We have to have a more diverse workforce. People that look like us. To say, “It’s possible. So am I.”

Danesha Lewis: Yeah. Exactly.

Maimah Karmo: And I think one thing that’s really important to ensure that these policies stick and are enforceable is policy. So, in terms of policy change, what do we want to see in terms of – what kinds of policies would help to create or eliminate systemic inequality in terms of the zip code issue and disparities in certain zip codes? And I think what you said, Danesha, was so important, that there’s systemic redlining that causes this to happen, right? It’s like it’s been hundreds of years in place. How do we unravel and dismantle that, and create what I would call the “nirvana of equity” for communities that are facing these disparities in certain zip codes?

Danesha Lewis: Yeah. Just quickly, I think that we’re doing a good job of recognizing it. I think that’s the best – the first step, and it’s knowing that there are inequalities. I think it took us years for people, as a whole, to realize that these disparities are real. It’s not just us throwing the race card, as a lot of people think that we’re doing. But it’s real disparities. It’s real things that exist, and it’s not just with cancers, it’s with everything. And so I think now, associations like AMA and APHA, they’re now looking at health equity. They’re putting it into policies. We’re trying to help these professionals notice and recognize, you need to listen to your patients when they’re saying – as you told your testimony and your story – age doesn’t matter, right? If something’s going wrong in my body, listen to me when I’m saying, this wasn’t here. Help me do something. Let’s figure this out. And not just throw me back home and tell me there’s nothing wrong with me. And so I think recognizing that inequalities exist. Racism exists in medicine. That’s going to help us to create and start to develop these policies.

Maimah Karmo: Yeah. Yamile, what kind of policy would you see that could be a broad sweeping policy towards equality per the zip codes?

Dr. Molina: Absolutely. And I am really appreciative of the organization that Danesha’s doing. And just thinking through, for decades now, we’ve had a rise of fierce leaders, right? And we’ve had a rise and are starting to see a shift in terms of representation in our healthcare force. So, for example, in Chicago, we have just two examples of many who represent Black excellence in radiology, including Dr. Lauren Green at UI Health, who is a lead for a mammogram clinic, as well as Jackson Park Hospital has Dr. Arlene Richardson, down on the site side, and she’s running her group there. So we are now seeing a space where the leadership – not only techs and nurses who are critical to us – but also our leaders are starting to really look and represent the inclusivity of our country.

I would say that in addition to that, as we’ve made these strides, there have been some pretty bold moves on the societal levels. So, for example, comprehensive or cancer centers that seek to get designated as comprehensive care centers if you will, or comprehensive cancer research centers through NCI now are required to submit a plan for enhanced diversity. Which, essentially, is focused on how each cancer center is really thinking through diversity, equity, and inclusion among their scientific workforce, among the clinical workforce, and the like. And so this was very recently unveiled, so I think we’re hitting that place where that effort and that equity is institutionalized. It’s streamlined, right? It’s part of the main conversation that’s really important.

I think another policy that is really important is enhancing the capacity of those safety net hospitals and clinics that are embedded in these zip codes and in these community areas. And so what we’re seeing is a rise with programs, such as the Illinois Breast & Cervical Cancer Program, which gives you free ride-shares using Lyft, Uber, or bus tokens, and all of that to help with travel support to these accredited facilities that have a high volume, and they have very experienced staff in terms of being able to read mammograms and the like.

Simultaneously, I think there really needs to be an investment in terms of those hospitals who maybe have less of a volume but are really wanting to have enhanced capacity to be able to serve equitably and to give high-quality care. So, again – and I’m just picking one of our partners, Jackson Park Hospital, a couple of years ago, got 3D mammogram machines. So now you have high-quality machines, in a hospital that is embedded in the south side, that is accessible as a walk-in site, right? Given and led by an amazing leader who really represents our communities.

So, just thinking through the notions of one, again, to Danesha’s point, diversity, equity, and inclusion, of course, matter in terms of our workforce, all the way up through leadership, and with an emphasis on leadership in all things. I think two, ensuring that travel is always covered financially and economically. We are starting to see those programs in place. And then, three, dedicated policies that are focused on capacity building for those safety net hospitals, of which I’ll just say, from what I said previously – I’m sorry. I run off a lot.

Maimah Karmo: It’s all good.

Dr. Molina: Well, that medically underserved area designation provides those supplemental grants for those hospitals to build capacity. And that designation is possible because of community participation and mobilization. So that’s just to say, community leaders can able and ensure that their area is designated so that we are able to apply for the grants, funding, and the resources to build that quality care in-house; in the neighborhood; on the corner.

Maimah Karmo: These are all really important points. Very valid points. As we move from ideating to putting in place policy that is being put in place, we have different groups that you’re working with that are doing things to increase – have more Black and diverse people, women and men and men in medical coats, in research, science, and all that. And so I think it’s important to think about how people feel around the disparities because there are still living committees that are having them, right?

So, as we’re putting in place these procedures and policies, and all this great work we’re doing, one thing that I learned really shocked me. That there’s a difference in staging in diagnosis and mortality outcomes based on zip codes. When I hear that, it’s scary. So, pretty much, there are statistics showing that where you live and work and play and pray, and where you abide could impact your disease stage, aggression level, and outcome. So, how do we help people navigate a system where it does take time? But what are the resources they can learn to lean on? Of course, there’s Tigerlily. I’m going to put us out there. But what can they do to be their best advocates while living with these, honestly, frightening statistics?

Dr. Molina: I would love to start if that’s okay. So UIC and the UI Cancer Center studied this for decades [inaudible 00:19:52] me, is with those zip code differences, in terms of stage of diagnosis, as well as mortality, right, which was recently found as well for breast cancer patients. A lot of this is primarily organized around neighborhood disadvantage, but also, the facilities where people seek care. So, again, it’s that really enhancing the capacity and the quality of those facilities to provide that care and have the equipment to detect cancers early; treat and be very interactive on there. And that is absolutely critical too, there. And so, I would throw out there, zip code differences really speak to, not only access but quality of care.

And I would just throw out there, and I know you as she’s coming on another panel. But Dr. Paris Thomas, who’s a part of Equal Hope, or the Metropolitan Chicago Breast Cancer Task Force – formerly known as that – they are an excellent example of a community organization that has actually provided these excellent high-quality decentralized navigation services. So that it’s not just going to hospitals, but we have a community organization that can refer people out to the best space for them that provides that quality care. And I think really investing in community-level decentralized efforts is key, so that we, as communities, are serving communities, right, where they are. Not where – 16 miles north, right, if you will.

Maimah Karmo: That was my next question. How can cancer centers collaborate with communities to better provide sustainable solutions that could be replicated across the country? And I think what we’re doing in Chicago, with Equal Hope and Rush, and what you all do is so important, and of course, as a partner, Tigerlily. But it’s so important to empower the community; to educate them, empower them, and give them tools to be their own best advocate. And then have indebted partners, like Equal Hope and Rush, and others in the city that work together to provide these solutions as a whole. What are your thoughts on that, Danesha?

Danesha Lewis: Yeah. I would have to agree. When I think about what cancer centers or anybody can do as far as resources, it’s really just with me, exposure is important, right? Like you said, communicate, be in the community, and educate. Those are all good things that – it would show people that, “Hey, I can get these services here,” or “This facility or this healthcare center has this.” I think a lot of people, not only because of the mistrust, uncertainty, or not knowing where to go – don’t know where to go, and so they wait until the last minute, and sometimes they don’t have the answers. And so, cancer centers and other things coming out into the community, and being a voice and providing preventative services, and telling people, “Don’t be afraid to get checked up,” or “Don’t be afraid to come here for our services,” or “We offer this, and this is what you can do if you feel this.”

And really, doing self-teaching and all of that is super important when it comes to bridging that gap and lowering the statistics that we, unfortunately, see when it comes to, either diagnosis for cancer, or even life expectancy in these zip codes. It’s a huge gap. Chicago leads it, unfortunately. And I really just think that, as we continue to go out into those communities and maybe put clinics there, so they can have access or have the transportation to get there. Those are all different ways that we can try to make a difference.

Maimah Karmo: Yeah. I love that. We do, as we provide women with training that are Black and brown women learn how to be lay health workers. We call them “Angel Advocates.” We have to be our own best advocates.

Danesha Lewis: Absolutely.

Maimah Karmo: If I hadn’t known that there was a lump in my breast, and to push for a mammogram and push for a biopsy, I would be dead today. And I want to emphasize that. I would be dead today. And so, as a mother, talk with your daughter about her body and the importance of doing breast exams. Talk to her about the importance of investing more in her body, mammograms, eating healthy, and exercising than buying that Louis Vuitton bag. People say, “I can’t afford a mammogram,” but they’re decked out in the shoes and the purse, right? Their hair is done, and their nails are done.

Danesha Lewis: That’s right.

Maimah Karmo: Our bodies are our temple, and we only have one life to live. And one thing cancer taught me was that this investment in my body, in my life, is the biggest investment I can give besides my spiritual investment in God. And so, really take time to go into the new year and map out what your healthcare should look like. Put it on your calendar. Make the appointments. If you have challenges, you have people that are on this call that can support you. There are two amazing panelists here. There’s Tigerlily. We have a lot of resources. We’re here for you in the community as a resource.

And don’t wait until you’re sick to get help. The best time to get help is before you get sick. Find a doctor you love and that you trust. Understand being healthy, what to do, and how to reduce your risk. Understand cancer, so if it does happen, you know how to think about it clearly and how to navigate that process.

So, thank you all for this great conversation. It’s been amazing talking with you both. I admire what you do. You inspire me. You’re changing the community where you live, work, play, and pray.

Danesha Lewis: Thank you.