[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.
We need to talk about Black breast health. Black women are about 40% more likely to die of breast cancer than white women, diagnosed at younger ages, at later stages and with more aggressive breast cancers leading to poorer outcomes. This monthly podcast series, Stand for H.E.R. – Uniting to Create a Health Equity Revolution, opens a national dialogue that engages community members and organizations, health care providers, research scientists, and opinion and policy leaders to discuss recommendations and actionable strategies to advance breast health equity in the Black community.
Susan G. Komen’s Center for Public Policy identifies the public policy issue areas where Komen’s voice can provide the greatest potential for achieving the mission to save lives by meeting the most critical needs in our communities and investing in breakthrough research to prevent and cure breast cancer. We are excited to discuss the work Komen is doing to drive policies that will bridge gaps that affect the Black community with Molly Guthrie, Komen’s Vice President for Policy & Advocacy, and Janice Parker, a 10-year breast cancer survivor and advocate. Welcome to the show, Molly and Janice!
[00:01:38] Janice Parker: Thank you. Thank you for having me.
[00:01:41] Adam Walker: Janice. You are a 10 year breast cancer survivor and have been involved in Komen’s Circle of Promise Advocacy Group and other breast cancer advocacy. Can you tell us about your breast cancer story and your work as a breast cancer advocate? And tell us a little bit about Komen’s Circle of Promise Advocacy Group as well.
[00:01:59] Janice Parker: Sure. My diagnosis came in September, 2012. I was diagnosed as stage zero DCIS. Ductal carcinoma in situ. And although I got a stage zero, I felt that, I still… my outcomes, I still felt were very glean and that was due to I have a family history. My mother and my aunt, her sister, both lost their battle to cancer.
So while I thought I knew what cancer looked like, I quickly learned that I didn’t know as much as I thought I did. And that’s mainly because in my household there was a rule, family rule, that what happens in the home, stays in the home. So my family did not discuss breast cancer. We couldn’t even discuss my mother’s diagnosis with our closest relatives.
So my mother’s sister didn’t even know, and when my mother’s sister got diagnosed, my mother didn’t know. So that in and of itself was a, a huge hurdle when I got diagnosed because immediately what did I think it’s a secret. So I had no intentions on telling my story until one day I saw this lady on our local news station telling her breast cancer journey, and I looked and I thought how bold of her to be on TV telling her story, let alone letting the cameras into the hospitals to journey her actual surgery.
I knew there was something inside of me at that point that said you were diagnosed for a reason. And it’s not just about your breast family history. You need to tell your story. So, I had intentions on reaching out to this lady to ask her, you know, more about, you know, her journey and what could I expect?
And more importantly, to see how did you get the courage to tell, talk about your story. So later down the road we end up meeting and I said all that I wanted to ask her, and she introduced me to come. Specifically to Komen Circle, A Promise Group. And that group is a group of African American women who work together to provide breast education, outreach, and survivor support here in our Peoria, Illinois area and advocacy.
Hit the ground running for me from that point on. So from there, from 2012, I’ve been involved with Susan G Komen’s Circle of Promise and an advocator, doing speaking engagements, support for friends, you know, providing education. And recently decided to continue my journey with some other initiatives here with Komen.
[00:04:51] Adam Walker: Molly, can you share how Komen’s public policy and advocacy work is focused on helping to drive a health equity revolution for the black community?
[00:05:00] Molly Guthrie: Absolutely, and before I get to that, Janice, thank you for sharing your story and putting it out there and continuing to pay it forward so that other women know that it’s okay and it’s a good thing to share their experience. So thank you for that. Within the Center for Public Policy, you know, I truly feel that everything that we do is through a health equity lens. You know, our ultimate goal is to create an equitable healthcare system for all. No matter your age, your race, gender identity, your stage of cancer, you know, your socioeconomic status. Every single person should have access to high quality, affordable healthcare, where they are. And really, lucky for me, that’s what I get to do every single day. A lot of it is focused on our specific policy work and policy initiatives. But in addition to that, we know that it’s vitally important to have advocates that reflect the community that we serve within the breast cancer population.
And unfortunately for far too long, I would say that has not been the case. So in order to help address this, several years ago now at this point, we started our Speak Truth to Power programming. And this program is really targeted at leaders within the black community to have a place to come together to engage and empower that more diverse advocate base, but to continue to amplify the voice and the needs of this community and ensure that there’s a seat at the table.
For everyone. Again, we want to be inclusive of all the work that we do. And you know, in the policy world, you have to be at the table in order to get the policy changes that are needed. So this program started with a federal focus. It was held for the first few times in Washington dc but we quickly heard from our participants that this needed to be replicated at the state.
So we started a couple years ago now a state version that builds off of the ideas that were established with our federal program for taking a step further that, you know, yes, we’re talking about the problems that exist, but we leave the state program with a prioritization of the issue that we can work on now that are needed within those states to address policy change.
And then my team takes it to the. Step of actually doing something to address these barriers, because it also feels like we’ve been in a bit of a cycle of continuing to talk about the problems that we know exist and not getting to a point of action. And really that’s where we’re committed now, is getting to a point of action and implementing these policy changes that we know are needed.
[00:08:05] Adam Walker: Yeah. That’s so important. I’m glad you’re getting to that point of action. So speaking of action You recently participated in a Speak Truth to Power event in Illinois. Can you tell us what you learned from that event and why you felt it was important to attend?
[00:08:21] Janice Parker: Yeah, so the funny thing is I really didn’t know my importance of attending until after I attended. So I attended based on an invitation and from our local Komen office who spread the word and thought that our Circle of Promise Advocacy Group repre representation would be great there. And I thought, oh, great. More tools in the toolbox to help us in our local outreach. When I attended this, I was blown away.
Honestly, I thought I was doing, we were doing in our community a great job at advocating when I attended this event. We were so empowered. I know. At least I was, and from the table that I was at, we walked away from. With an action plan, like really action, like things that we can put into place and and be better about the way we advocate.
I learned that advocacy is power. That was one of my greatest takeaways from the event. I also learned that we have to do or make greater efforts to address the systemic inequalities in healthcare. Some of those I myself had no clue that happened. But it all made the big picture much clearer. I learned that there is more racism and biases in healthcare that I knew about. But I also learned ways that I can help advocate for people that I work with on how to get through to that. I learned about the Komen’s Navigation. Patient Navigation Program, which I was very interested in and thought OMG, this will be so helpful for the community in which we serve.
So then I realized why it was important for me to be there. It was important for me to be there to get the tools and resources that I need to continue the boots on the ground advocacy that I do in my local community.
[00:10:36] Adam Walker: Yeah. Yeah. That’s great. I’m so glad that you went, and I’m glad that you brought back things that you could share with us. That’s so important. So Molly, on a policy level, we know that statistically black women are less likely to participate or even be asked to participate in clinical trials than white women. So can you share an example of legislation Komens currently supporting that can help bridge that gap in the black community?
[00:11:02] Molly Guthrie: Yes. I will say this has been maybe one of the tougher knots to crack because there are so many different areas that are involved in increasing access and utilization of clinical trials. But I think you hit the biggest thing right on the head is that in the black community, those women are not being asked to participate. That’s one of the reasons that we see such lower participation rates for for that population. And it’s something, again, that’s been in conversation for years but we haven’t gotten to a place of clear solutions. So in general, participation in a clinical trial is complicated.
Even if you have a provider that’s, you know, opening all the doors and filling out all the paperwork for you. But in addition to that, it can be expensive. So, that is a place where policy intervention can help and has already helped. So, as of last January, now, almost all people covered by private insurance plans, Medicare and Medicaid have the routine costs of clinical trials covered by their.
Which seems straightforward, but many people don’t know that they weren’t covered. So the Medicaid population was the last population to have those routine costs covered. So if you needed lab work or a doctor’s visit for, you know, something that was happening because of the local trial, you were being forced to pay out of pocket.
So great step in the right direction. But we also at the Center for Public Policy just completed. Issue vetting process for the next two years. And one of the issues that has risen to the top and is part of our priorities is co addressing ancillary costs. So those additional costs that are not directly related to your treatment, but that people are still facing.
So the cost of transportation, the cost of childcare, you know, the cost of having to take off work to get to those appointments. And so that’s something that we’ll be pursuing. As a common lab solution to address that. On the federal side, there have been a lot more effort in the last year or two with legislation being introduced such as the Depict Act and the Clinical Trial Diversities Act. So to use the stick and the carrot analogy, the federal government has been issuing guidances to people and companies conducting clinical trials, encouraging them to increase diversity enrollment.
But it’s really ended at that. It’s just been encourage. And so now there is legislation that’s being introduced. It has not fully passed yet, but it has a little bit more of a stick to it, so a little bit more of enforcement and requirements for clinical trial organizers to, to submit a diversity plan along with everything else that they have to do to get approved for a clinical trial.
We’re making progress there, but there are definitely barriers that we have to address. We have to make sure that people are being asked. I think we also have to make sure that it’s not seen as a last resort, which Janice was something that came up when, at our recent Speak Truth to Power Event, was that I think the majority, if not all of the participants in the room, you know, they weren’t educated about clinical trials at the beginning of their treat.
It was if things weren’t working then they maybe got educated or had the opportunity to participate in the clinical trials. So, maybe with the positive light, there are a lot of opportunities for policy engagement, but there are definitely a lot of barriers that are, you know, having the impact that there’s a low percentage of people, especially within the black community and minority groups and even women participating in the clinical trial process. Yeah.
[00:15:24] Adam Walker: So, so Janice, I understand you participated in a clinical trial. I guess my first question is, were you asked to participate? And then can you share your experience of participating in the trial and why it’s so important for black women to participate in trials?
[00:15:37] Janice Parker: So, yes and no. I was asked about clinical trial after I made an inquiry to someone else, so, The reason I made the inquiry though was. Because going into this, I knew that this was a hurdle. I knew clinical trials are issues for my population of community. I knew that I was prepared to get backlash from not only my family, but also friends, including my Circle of Promise advocates. Because as Molly stated, we have so many barriers being asked to participate is just one. The other side of it is the trust from the African American community. So you can ask many and they, you still may not get the participation that we need. So this is something that’s really big on our radar for Circle of Promise in 2023.
Is clinical trial, education and advocacy. We want people to understand that diversity matters. BEcause we have not felt, you know, that probably 80 to 90% of the population, at least that I know that are impacted by breast cancer. There’s an immediate no. No, because of previous, you know, experiments and, you know, that we are viewed as the Guinea pigs. You know, just people’s perceptions.
But we want to advocate to say that, first of all, we want people to know that these trials help researchers find better ways to prevent, diagnose, and treat breast cancer. That’s first and foremost. We know the numbers, we know how we are impacted. We know what, you know, the diagnosis and death rates are for our population.
So what do we do about it? So I think the first hurdle that we want to tackle is, educate educate, and let people know that different populations respond differently to therapies. So if we’re not included, then how do we know how that therapy’s going to impact us? Right? So I’ll tell this quick story.
When I first got diagnosed around my circle of friends, it. Well, you know, this drug or that drug doesn’t do well with our population. And I say, well, how do you know? And it just doesn’t, you know, I’ve taken it, you know, this person I know taken it, it just didn’t do well. And that actually pushed me to say, I’m going to learn more about clinical trials and as much.
I may have some fear of what the impact may be of the unknown. I’m going to do it because I want to be that advocate that says, I did it. What’s your excuse? And to share my story. To share my story of how I was treated, how the process went from treatment to the financial piece of it, and all of. So I’m grateful that I did the experience because it allows me to be able to gain trust with those who I’m advocating for or partnering with in their support, and I know what to expect.
Right? So, and Molly said it so, so accurately that we oftentimes don’t participate in clinical trials until it’s the last resort. So I want to change the narrative of that and say, if you’re willing to do it as your last resort, why aren’t you willing to do it in the beginning? So we have an annual, the Circle of Promise, Susan G Komen Circle Promise Group, we hold an annual breakfast and this breakfast is for survivors, caregivers, and their friends. And so we, it’s a sold out event. It’s an awesome event. More than 500 people attend and we want to put that on our agenda for the program this year is talking about clinical trials. And genetic testing. So I, that’s my experience. And I hope to continue to learn more about the clinical trials and get more people involved in the beginning.
[00:19:54] Adam Walker: So important. So important. And and you mentioned genetic testing. Somali next question for you. We know that black women are less likely to be referred for genetic counseling and testing the white women. What type of legislation is Komen supporting in this area to help bridge the gap for black women?
[00:20:11] Molly Guthrie: So this is another issue that we spent a lot of time talking about in in Chicago for the Illinois Speak Truth to Power, but it’s also been something within my team that we’ve been trying to figure out what the best policy solution is. Again there’s a multi-pronged approach and it’s not as easy as having.
Solution. So right now when you look at mandated insurance coverage through the Affordable Care Act, there is some when it comes to genetic testing but the qualifications are very narrow and are often only focused on the BRCA one or BRCA two gene mutation. So through the policy lens, we know that there can be benefit.
Two genetic testing associated with and alongside genetic counseling, both to know your risk but if you, after diagnosis, to also help guide some treatment decisions. So the more that we can expand access to that, the better. There are. Bills were, you know, it’s January, so we’re kicking things back off in Washington DC So last Congress, there was a bill, the Reducing Hereditary Cancer Act that was introduced that we expect to be reintroduced this year, that starts working towards the goal of expanding access beyond that.
BRCA one, two. You know, now the most common use out there is a multi-gene panel so that you’re testing for a multitude of genes that are tied to breast cancer. It’s no longer just the mutation on the broco one and two. But if you do that additional testing, they, it comes with out-of-pocket cost, which is a natural deterrent for anyone.
You know, once there’s a cost associated with something, the utilization. That item goes down significantly. So how can we work to address that? And that is probably one of the areas I’m most excited for. So this was the top issue identified by the participants in the Illinois Speak Truth to Power cohort.
So a little teaser that we’re going to be exploring legislation in Illinois to eliminate that, the cost for genetic counseling and testing. So that we can hopefully expand access and that we’re creating a more even playing field. I would say and you’ve mentioned this in your question, that it’s genetic testing, but it’s also that genetic counseling.
So we want people to be able to receive guidance and understand their test results from a genetic counselor alongside receiving their test results so they know what it means. They know what the next steps are. They know what additional items, additional imaging they might need when it comes to screening, if they haven’t been diagnosed.
We can’t just give people their test results and tell them to, you know, go forward and good luck that it ha they have to go hand in hand. So I hope that Illinois is ready to implement some policy change there and can. Serve as a role model for work across the rest of the country so that we can address this sooner rather than later.
It’s a shame that we’re still having this conversation in 2023 when these tests have been around for many years. So I’m really excited about the potential of this specifically. And know that it’s a need that’s been addressed within the groups that we’ve talked to, especially those in the black community that aren’t receiving this know really vital and important part of the breast cancer continuum. Right?
[00:24:17] Adam Walker: It’s important work. It’s important work. And so appreciate that work. So, so Janice, you and your daughter underwent genetic counseling and. Can you share more about that experience and the importance of genetic counseling and testing, especially for the black community? Yes.
[00:24:33] Janice Parker: So back in two when I was diagnosed, I think we did ours in like maybe 2013, 20, no, it was 2012. Of course I went, I did genetic testing and received genetic counseling, which resulted in my daughter participating as well. At that time she was in early twenties, and so none of this made sense to her. And of course, you know, with the family history, In her mind and still today as a recent conversation as just yesterday still about these worries of, you know, what does this mean?
How does this impact? So this is going to be my passion this year as well. I am impacted in several ways by genetic testing and counseling. Obviously going through it myself and then having to educate, you know, myself and my family about the results and, you know, the potential what ifs. So that became very personal.
That was the first time anyone in my family had ever experienced or heard of genetic testing and knew that it was even an option that was introduced to me by my breast surgeon. And I’m thankful for that. And that experience has helped me in my advocating. But more recently, this has become more personal to me because my mother-in-law was diagnosed with breast cancer and received her results while I was at the Speak Truth to Power Conference, and she is 74.
And so going through this journey has really opened my eyes to, to what is necessary for our aging populations. I like to think that I’m a person of knowledge. I can, you know, catch on very quickly. I’m very educated. I know how to advocate for myself. But seeing her go through her journey and the multiple doctor’s appointments, the genetic testing that she felt was so necessary for her, but she’s on a fixed.
So our family rallying together to make sure that happened, and then being a part of her genetic counseling, to hear the counselor talk in a language that she just completely didn’t understand. So my heart goes out to people who, number one, don’t get the opportunity to participate, because for us, we know the generational impacts.
And I know that personally because my father is a four-time cancer survivor, and because of my genetic testing, it told me about a gene that was linked to a cancer that he had. It’s even longer story in how I was to order to get a colonoscopy before the age of 50 and my insurance denied me, although I had the mutation and my father had the cancer, as well as other family members.
So this is very important to me. I’m very passionate about it and I’m excited for what Komen is going to do at an MLK event. Yesterday I saw my state representative and I said, I need to get on your. She said, you got it. So I’m looking forward to what we can do in this area.
[00:28:02] Adam Walker: And I’m looking forward to what you’re going to do. You’re already doing such important work. This conversation is such important work, you know, I so appreciate you being willing to share it with us. Thank you. So Molly, last question, this for you. How can our listeners stay up to date on Komen’s public policy work and get involved at an advocacy level?
[00:28:25] Molly Guthrie: I would start just by sharing you that the couple of topics we’ve talked about today are just really skimming the surface that there are a lot others. One other that I would just quickly flag is access to the breast imaging that’s based off of your need. So that’s another area that Komens leading but also came up in our speech sheet to power events because a screening mammogram.
Isn’t the solution for everyone. But again, when you go beyond that, you have that cost factor that we’ve talked about with all the other issues that we’ve talked about today. But the easiest way I flag that, cause a lot of the communications that will be coming if you sign up to become an advocacy insider, will be focused around that issue because that’s where we have a lot of momentum right now to eliminate cost sharing.
Diagnostic or supplemental breast imaging. Janice is in Illinois and she’s fortunate because we’ve already addressed it in Illinois. But we have about 20 states that we’re looking to introduce legislation in this year that will address that. In addition to the other issues that we’ve talked about today, as I mentioned the easiest way is to become an advocacy insider.
It’s real easy to sign up. You just have to text Komen, K-O-M-E-N, to 4649. It sends you a text. You just fill out the, I think it’s three questions, and you’re automatically signed up to become an advocacy insider. And what that means is that you’ll be connected, you’ll be contacted with a monthly newsletter about what’s going on.
But as we’re introducing these bills, whether it be in your state capital or in Washington DC. And we need you to share your voice, and we need you to be as powerful and impactful as Janice has been and will continue to be. You’ll get alerted and all you have to do is click a button and you’re able to add your voice in support of these policies as we know are so direly needed across the country.
So it’s real simple. The other benefit when you sign up is that you’ll be alerted for other, for additional events that are happen. Like speak to truth to power that we talk about today. We can expect to continue to offer those in different locations. And if you’re signed up to be an advocacy insider, you’ll be alerted when those are available.
So it’s a great one stop shop. And again, it’s just Komen, K-O-M-E-N, to 4649.
[00:31:02] Adam Walker: Wow, that’s a great way to get started. It’s easy, it’s a quick text message, and if you’re even remotely interested, I would encourage you to do it. Literally write this second, press pause and go do that right now. So, Janice, Molly, thank you for your time on the show today. Thank you for the work that you’re doing. It’s so important and we stand with you as you do it.
Join us as we Stand for H.E.R. to drive a Health Equity Revolution where we’ll create a world without inequities where Black people have the same chances of surviving breast cancer as anyone else. To learn more about Stand for H.E.R. and advancing breast health equity at Susan G. Komen, please visit https://komen.org/StandForHER.
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.