[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.
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.
Health equity means that everyone has a fair and just opportunity to be as healthy as possible, despite their cultural or demographic background. But achieving this means removing obstacles to health, such as discrimination, economic disadvantages, and lack of access for certain populations and communities.
Today’s guest Omatola Gordon-Rose, Senior Director of Health Equity Initiatives at Komen, understands how multiple barriers combine to create breast health inequities in the black community, and is here to share how the program Stand for H.E.R. A health equity revolution addresses these inequities through several tailored interventions. Omatola, welcome to the show.
[00:01:11] Omatola Gordon-Rose: Thank you. Thank you so much, Adam, for having me, I’m excited to be.
[00:01:16] Adam Walker: I’m excited to have you. This is really important. I really appreciate you coming on the show to kind of really take a deep dive into this. So Komen has been working to advance health equity for years. How to Stand for H.E.R. Deepen Komen’s health equity work.
[00:01:33] Omatola Gordon-Rose: Well, Adam, we a, again, you said it we’ve been doing this for so long, right. And advance in health equity and improving breast cancer outcomes for historically marginalized and under resource community is one of Komen’s key strategic imperative. And that is reflected throughout all of our work. So we have been working in this area for a long time and have learned some key things.
And most importantly is, we have to get from talking about the problem and describing the problem to providing solutions that work on various levels. And those solutions are critically important to the black community. So our Stand for H.E.R., a health equity revolution is Komen’s national commitment to collaborating with black people, policy makers, researchers and other key stakeholders to help to create a world without inequities and where black people have the same chances of surviving breast cancer as anyone. So this national strategy for Stand for H.E.R is an evidence based approach to support supported by a series of reports that coma had published in 2021 called the closing the gap reports.
And from that We have deepened our work our approach to health equity by providing education that equips black people with knowledge about breast health patient support, that ensures connection to timely and high quality care we’re working on workforce development that improves. Diversity and cultural sensitivity of healthcare workers.
And we are ensuring that research is representative and benefits all, and we are also advocating for equitable policies. So those are some ways that we are dealing our work through our Stand for H.E.R. Program.
[00:03:31] Adam Walker: And so, so you mentioned the, the 20, 21 report closing the breast cancer. And I think that was a report that took into account 10 metropolitan areas that experienced the largest gaps and mortality rates between black and white women.
Can you share with us a little bit about what that report found?
[00:03:51] Omatola Gordon-Rose: Who the report found so much freak stuff. And I’m just so excited to share, because we know that these issues exist. We know that these problems existed, but to actually see it documented was eye opening for us. And again, going from talking about a problem to solutions.
So one of, some of the I’m gonna just give you a few highlight findings because we found so many great So many great pieces to this report. So one of the things that we found is that facilities that serve predominantly minority women are less likely to be an academic or private institutions. They’re also less likely to have digital mamography screening and less likely to have dedicated breast imaging specialists reading those films.
We also found. The quality of healthcare is segregated with the national cancer Institute designated cancer centers and the major academic institutions located are located in predominantly white neighborhoods. And at the same time, black communities are often supported by community clinics that often do not meet quality standards of care.
So many of the healthcare facilities that provide these high quality care. Do not even, you know, sometimes do not take patients on Medicaid or Medicare or other low cause health exchange plan. So black women on these plans often feel discriminated against. And even when the hospital, even when the hospital accepts the health insurance, they still feel.
That discrimination. Another thing that we found is implicit bias. A lot of the participants noted that they feel they are treated differently in the healthcare settings because of their race and the perceptions their provider may have about them. And I wanted to mention that it’s important that throughout this entire research project the landscape analysis for this report They’ve noted that breast cancer outcomes was driven by racism, bias and barriers in the healthcare system settings, and all, most of the black women across the country, despite their income, education and insurance status felt this.
So Those are just some of the findings that we have. Additionally, we found that provide patient navigators and black women in focus on in the focus group, all noted at how important the PA the doctor patient relationship could be to supporting women successfully managing their breast cancer.
Across the continuum of care, but yet this was just surprising to me yet, black women often feel that they’re ignored or met with this approval by their healthcare providers and others in the health system. So some relate experiences of harsh or compassionate and unnecessary, painful treatment at the hands of their healthcare provider.
And this is heartbreaking because This should not be happening to our black women. You know, we are dying at 40% higher rate when compared to white women.
[00:07:11] Adam Walker: Hmm. Wow. I appreciate you sharing that. And, and, and you’re right. It should not be happening. And some of that’s just so difficult to hear. So I know that come is addressing the barriers that created these inequities for black people through tailored interventions.
One of which is education about breast. How is Komen providing education to the black community?
[00:07:35] Omatola Gordon-Rose: Again, Komen is deepening our work in addressing these barriers so that black women can get the needed information and make informed decisions. And being, being able to advocate for them their breast health.
So we have our website that has a plethora of education materials from family health, history, risk, breast cancer, subtypes treatment option tailored to. Differences in black population. We also provide education and breast self assessments screening guidelines, the importance of family health, history, breast cancer risk.
We are also have information on how to advocate for their own healthcare for their own health. We are also creating and amplifying conversations about breast health. And Komen resources in the faith-based community because in the black community, faith base is a, is our driving force to everything that we do.
So through our faith-based communities we have our worship Komen’s worship and paint volunteer ambassadors that talk about breast health and teachers about breast health in our faith-based communities. And through Komen’s metastatic breast cancer impact series. We also provide those information on living with metastatic breast cancer and understanding their loved ones to have a safe and collaborative space to gather information.
We are also utilizing data to tailor genetic counseling and testing education materials to the black community, because that was also one of the findings from our reports where there is a lack of Information and education material for the black community when it comes to genetic counsel and testing.
So those are just some of the ways that we are providing education to help to break those barriers in black community.
[00:09:37] Adam Walker: That’s great. And, and I understand there are also barriers that restrict access to genetic counseling and testing services in black communities, such as a lack of knowledge of testing services and implicit racial bias among doctors.
How has come working to address these issues?
[00:09:56] Omatola Gordon-Rose: Wow. We are doing so much. There’s again, so much problems. and we only have so many little time and resources. Right. So we had to, again, as I mentioned strategically, think about what are those barriers based on our findings and what can we address right now?
And yes, they are significant barriers in genetic counseling testing in the black community. And one of the findings again, common solution driven. Orienta oriented approach is to addresses in two ways. So we are increasing access. Two and utilize utilization of genetic counseling and testing services by partnering with health systems, such as the university of Pennsylvania Abramson cancer center and MD Anderson cancer center that will help to provide 600 genetic counseling and 300 genetic testing for black families.
And also we are working to develop new and existing culturally. Linguistic genetic counseling and testing educational materials to help meet the needs of the black community. And these materials will focus on the importance of knowing. Your personal and family health history, understanding options for individuals at high, at high risk and questions that they can ask their doctor around genetic counseling and testing and understanding their options.
So those are just some of the ways we are breaking down those barriers and increase in access increasing access and knowledge in addressing racial bias in the healthcare for genetic counseling and
[00:11:38] Adam Walker: testing. Okay. Wow. That’s that’s great. And, and so I, there’s just, there’s so much to dive into, so I’m just gonna keep peppering you with questions here.
I, I, I hope I hope that’s okay. So I also understand that come’s new patient navigation training program is training culturally responsive patient navigators to serve black patients in the metropolitan areas with the greatest inequities. What sets this program apart from other patient navigation programs?
[00:12:06] Omatola Gordon-Rose: Our patient nav. I’m so proud of our patient navigator program and our patient navigators in house because the navigation training program is designed to teach aspiring patient navigators supporting their ability to enhance their career paths, but commons program. Is enhanced with a first of its kind module on navigating racism and bias for black patients in the healthcare system.
So that’s what makes it unique. And what sets this program apart is that it is more than just. A training, it’s a community and we are building a community of navigators. The program has a two prong approach to the, the diversifying the workforce and providing navigators with the necessary tools needed to.
Serve historically marginalized communities. And this includes creating spaces like forums social hours panel discussion for navigators to talk about how to address barriers that come into play because of these disparities. It also includes networking, sharing resources, and giving navigators a voice.
So. They can provide feedback on the program itself and let us know what content they need to serve. Patients of varying cultures, background, races, and ethnicities. So as you can see, these are some of the key areas that set our program apart from other navigator navigation programs. Okay.
[00:13:44] Adam Walker: Wow.
That’s fantastic. So so two more questions, cuz again, lots to cover. So thanks for, for being a champ through this. So Komen developed a public policy training program called speak truth to power, stand up, speak up for black leaders and influencers to learn about how policies can be used to address inequities.
What solutions came out of this training program.
[00:14:09] Omatola Gordon-Rose: Yes. So. I’m proud of this speak, true to power program training program, because this is on the next level where we are talking about advocating for equitable policies and California stand up, speak up cohort. They had identified key barriers impacting health equity in the community that focused on unequal access to medical treatment.
That resulting in less access to screening services, increased prevalence of late stage cancers and limited access to all available treatment options. So the cohort identified and prioritized three policy solutions. Or interventions to address the key barriers. So the first was to eliminate out of pocket costs of medically necessary diagnostic imaging.
The second was to is to increasing clinical trial access, education and participation. And third is to expand access to patient navigation. Through the cancer journey. So in determining our current policy priorities in California, We looked at the current health policy landscape and the opportunities for legislation that could address and identify, speak to true power policy solutions.
So of course, out of these three that I mentioned earlier, Diagnostic image stood out as the issue with the greatest impact and the likelihood of getting passed during this legislation session. So great news that this legislation, which is the AB 2024 legislation has currently passed the assembly and will be heard in the Senate committee on health next week.
Additionally, which we are so excited about. Komen is working in partnership with the city of Komen, other patient advocacy organizations on the cancer care equity act, which ensures access to medical patients to NCI designated care for complex cancers. So this legislation will help to Address Al access to medical care and increase clinical trial access.
And that’s by ensuring high quality care, which include clinical trials and regardless of the patient’s insurance status. So as you can see, these are some of the solutions that we. We’ve arrived from, from this speak up stand up, speak up cohort in California, Texas. Hasn’t had a state session yet, so we haven’t had an opportunity to address priority issues with this Texas cohort.
But we are still working on that.
[00:17:06] Adam Walker: Okay. So, so I, I wanna, I wanna, I wanna go back to something you said earlier, just to kind of underline the gravity of this, just one statistic. And, and then I wanna ask you final question. So I want, and I wanna make sure I get this right. So I, I believe you said earlier that black women are 40% more likely to die of breast cancer than white women, is that correct?
Yes. OK. Yes. So, so now that, now that we’ve said that, and our audience has heard that. I believe based on this conversation and many others that we’ve had on this show, I think we all understand and agree that that’s accurate and true. Now, my question is how can our listeners that maybe seem overwhelmed by this issue?
How can our listeners get involved in come’s health equity work to decrease, to decrease breast cancer disparities in the black community?
[00:17:56] Omatola Gordon-Rose: Yes. So the 40% is it’s, it’s ridiculous. It, it, it angers me every time I think about it because of the prevalence rate. We are dying at a young, at younger ages as well, and at the most with the most aggressive types of breast cancer.
So the health equity revolution and our health equity work to address these inequities require. A multi-prong approach. So health equity work, can we can’t do this work alone? I always say we can’t do this work. We need partners. We need stakeholders. We need community members to get involved, to help us to drive this work.
So with Komen, we policy policy changes is a key to helping to move this work forward. Join our advocacy go to our center for public policy to get involved with our advocacy. Through legislation because it’s not just a one and done approach for us for Komen. And we know that it takes a village to create systems change that is driven by a long history of racism, bias and, and barriers in the healthcare setting.
So we are looking for passionate and motivated people to connect with us, to partner with us and to help us to drive this work F forward. And so that black women, we couldn’t have the same, same chance of surviving breast cancer as anyone else. So we want to support you, but also we want them to also to support us in this journey to help address these inequities.
[00:19:39] Adam Walker: That’s good, and, and if our listeners do want to get more directly involved, is there a place they can do that? Should they go to just comin.org? What, what, what’s the best next?
[00:19:49] Omatola Gordon-Rose: Yes. So they can go to Komen.org. They could sign up for our, on our health equity page and they could sign up for our newsletter.
They could sign up to be part of our advocacy network. There’s so many action. They could reach out to our Komen help line to be able to get connected to any one of our services. They’ve heard me discuss earlier from our patient navigation to education, to genetic counseling and testing.
So all of that information, they can find on our Komen website as well as our calling our helpline.
[00:20:24] Adam Walker: That’s fantastic. Well, thank you so much for sharing that. Thank you for taking the time to walk through just such an important thing. And, and I, I genuinely appreciate the work that you’re doing. It’s so, so, so important.
Thank you for, for doing the. And thank you for joining us on the show today to share about it.
[00:20:42] Omatola Gordon-Rose: Thank you, Adam. I enjoyed our discussion.
[00:20:46] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. 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.