Komen’s Origin: From Health Equity for Women to Health Equity for All

[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 another powerful episode of the Komen Health Equity Revolution podcast series. Each month we invite patients, community organizations, healthcare partners, researchers, and policy advocates to spark conversations about strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.

[00:00:41] March is Women’s History Month. So it’s fitting that we talk about how Susan G. Komen started off making history and continues to make history as an organization dedicated to achieving health equity. At its inception in 1982, Komen started as a health equity organization dedicated to supporting women at a time when even saying the word breast meant a lot.

[00:01:03] was taboo and women’s health was simply not centered. Since then, Komen has doubled down on its health equity focus and works to advance and ultimately achieve health equity for historically marginalized and underrepresented communities. Joining us today is Katie Diamondstone, vice president of community health at Komen to talk about Komen’s origin story and how that work continues today.

[00:01:28] Cati, welcome back to the show.

[00:01:31] Cati Diamond Stone: Great to be back.

[00:01:32] Adam Walker: It’s so good to chat with you again. I’m looking forward to this conversation and kind of, you know, looking forward to a more historical perspective. I don’t know that I’ve done a good job of that, like looking back on the history and kind of the breadth of it of Komen.

[00:01:47] So I’m excited about that. So, so let’s hear about how Susan G. Komen came to be. What is the origin story?

[00:01:54] Cati Diamond Stone: The origin story of Susan G. Komen is a really powerful one, and it’s one that truly shows that one person can make a

difference in this world. Susan G. Komen was known as Susie to her family, and she was only 33 years old when she was diagnosed with breast cancer in the late 1970s, and she unfortunately lost her life to the disease at the age of 36.

[00:02:21] Before she died, Susie’s sister, Nancy G. Brinker, made a promise to her sister Susie that she would do everything she could to end breast cancer forever, because she didn’t want any other family to have to suffer a loss like her family was going to suffer. And Nancy Brinker followed through with her promise, and two years after she lost her sister Susie, she founded a foundation.

[00:02:45] The Susan G. Komen Breast Cancer Foundation, which is now the largest breast cancer organization in the world. Wow. And all of this came, Adam, from the love between two sisters. So truly love is what this organization was built upon and it really shows that one person can make a difference.

[00:03:09] Adam Walker: I mean, that is, you know, you think about making a commitment to someone in that circumstance and not only did she make that commitment, but to make it and then follow through to the scale and the caliber of the organization.

[00:03:22] that she has is just so profound. That’s really amazing. So why was it so important for women’s breast health at the, at that particular time in history?

[00:03:35] Cati Diamond Stone: In the 1970s and 1980s when Susan G Komen was going through her treatment, which by the way is only about 40 years ago, people rarely uttered the word breast out loud, let alone breast cancer.

[00:03:49] So women were experiencing breast cancer. Not only privately, but silently, there was a lot of shame and stigma attached to the disease. And frankly, women’s health wasn’t something that was a priority in our country at all at the time. Breast cancer detection was made solely by feeling for lumps.

[00:04:12] Mammograms were considered new technology at the time, and they certainly weren’t covered by insurance. There weren’t programs available to support women with the cost of treatment. And almost everyone diagnosed underwent a radical mastectomy no matter what they’re staging. So we were in a world where there was truly a one size fits all approach to care.

[00:04:36] And what Susan G. Komen started with was breast cancer awareness campaign. It was a movement that changed the trajectory of breast cancer care and treatment. And suddenly, women were openly talking, not only about their breast health, but about their health overall. And the awareness was huge, but it certainly wasn’t just about awareness.

[00:05:01] To date, Komen has invested nearly 3. 6 billion dollars in groundbreaking research, in policy and advocacy efforts, and in community health programs in more than 60 countries. And when you boil it all down, Komen was founded on a gender equity platform.

[00:05:21] Adam Walker: That’s right.

[00:05:22] Cati Diamond Stone: And, but look what happens when women are heard.

[00:05:25] Komen’s work has supported a 42 percent decline in breast cancer mortality. In the U. S. between 1989 and 2021, and that translates to over 490, 000 lives saved from breast cancer. We still have an incredible amount of work to do, but look at this progress. All based on a time when women weren’t heard to 40 years later where breast cancer is certainly top of mind for most women.

[00:05:57] Adam Walker: Yeah you use the phrase a movement. And like, that’s how, like, I, like, I remember, I mean, it must have been in the 90s. Like seeing maybe it was a commercial or something about like the three day walk and it was this sort of like wow Like that’s so bold and so and I mean I was like a kid, and it still showed up on my radar because it was so Prolific in the culture at the time and so so whoever was organizing that just did an amazing job of turning common and I think to this day like into a movement of people So That is so much larger than any one thing.

[00:06:40] Right. And I just, I love that. I’ve always thought it was just really profound and interesting. And I love that’s why I just love being a part of this, you know what I get to do on this show. So so, so talk a little bit more about like why Komen double is doubling down on help this kind of help equity approach.

[00:07:01] Cati Diamond Stone: Despite major advancements in breast cancer care and treatment, not everyone has benefited equally, and breast cancer doesn’t discriminate based on gender, age, race, ethnicity, socioeconomic status, but widespread breast health disparities and inequities are contributing to poorer outcomes, specifically in communities that are historically marginalized.

[00:07:28] And I’ll give you a couple of examples. Black women in the US are about 40 percent more likely to die of breast cancer than their white counterparts. Hispanic women are more likely to be diagnosed at a later stage. One in six Americans live in a rural area where finding a place to get a mammogram, let alone quality treatment, is difficult.

[00:07:54] So achieving health equity is one of Komen’s strategic imperatives. And what that means is that health equity is interwoven into everything we do, and we’re led by the data. We’re constantly looking at the data to not only understand where disparities exist, but also how to best provide the solutions because we want to make sure that every person has access to everything they need to detect and survive the disease.

[00:08:21] Adam Walker: So originally, right, Komen started out fighting, I guess maybe described as like fighting for women to be heard, right, just women as a whole, but moving forward, as you just described, like there’s other inequities within the category that also need to be addressed. And so, so through the years, you know, talk about how Komen has moved toward an approach that addresses the unique needs of each specific group or population that’s experiencing the breast health inequities.

[00:08:51] Cati Diamond Stone: So I mentioned earlier, back in the 1970s and 1980s, especially when Susan G. Komen was coming into being as an organization, there was a one size fits all approach to breast cancer. But what we know now is that there is no one size fits all approach, and that you have to meet the unique needs.

[00:09:10] Understand the needs and meet the unique needs of every individual person in order to make an impact because we are not all the same. Achieving health equity takes a 360 degree approach. And at Komen, we have all the elements that we need to make an impact. And that’s research, it’s policy, and it’s community health patients.

[00:09:32] support. So one great example about how all this work shows up in this 360 approach degree approach is put into action is with our stand for her program, which is Komen’s comprehensive approach for achieving health equity in the black community. And our approach includes education, patient support, workforce development, public policy research.

[00:09:54] And we recently published our stand for her impact report, which shows how The 360 degree approach shows up for the black community. And in this report, which you can find on our website at Komen. org, you’ll see education work that goes deeply into communities through faith based organizations, for example.

[00:10:14] You’ll see a focus on investing in breast cancer research to understand and resolve the many factors that contribute to breast cancer disparities. You’ll learn more about our Advocacy Ambassador Program that trains black advocates to use their voices to make policy changes in their

communities. And you’ll learn more about our Patient Care Center that provides individualized support for patients.

[00:10:38] for people across the country, always leading with a focus on what each person uniquely needs.

[00:10:45] Adam Walker: I love that. I love that. Wow. That’s so that’s so great. And so encouraging that we’re able to do that much stuff. So, so Katie I want to shift gears a little bit to your story. So I’ve had you on the show two, maybe three times, still not sure about that.

[00:11:03] And, but knowing you for years and you’ve been at Komen for years. And so I love you to talk about like, what does this all mean to you personally?

[00:11:11] Cati Diamond Stone: Oh, gosh, coming up next month, I will be a 14 year breast cancer survivor, Adam. And it’s just such an honor to be here doing this work at Komen, working to improve the lives of women all over the world.

[00:11:26] And I’ve lost too many friends to this disease, and I don’t want anyone else to experience a loss. And when we all hold hands together, we really can. need the change we want to see in this world and having the ability to play a small role in that just means everything to me and to my family.

[00:11:48] Adam Walker: Yeah. It’s so it’s really an honor and a privilege to get to contribute and for me personally, and even a very small way to this community.

[00:11:59] So so I really appreciate you sharing that. So let’s fast forward. So we’ve looked at, you know, the history of Komen. Yeah. What’s the future look like? What is Komen going to do for women in the future?

[00:12:14] Cati Diamond Stone: At Komen, we want our legacy to be a world without breast cancer. And to get there, we have to keep our focus on our 360 degree approach.

[00:12:26] Desmond Tutu has this fantastic quote where he says, There comes a point where we need to stop just pulling people out of the river, and we need to go upstream and find out why they are falling in. And when you think about Komen’s work, Like a River, Upstream, our research investments are getting to the root causes of breast cancer so that we can ultimately find the cures and no one has to worry about breast cancer.

[00:12:54] Midstream, in the river, our policy and advocacy work is making access to health care easier for all people. And then downstream in the river, there are still people who need help and support with breast cancer right now, here, today, and that’s the work we’re doing with our patient care center in our community health.

[00:13:13] And it’s going to take all of these approaches working together to put an end to breast cancer forever. And we’re not going to give up until we get there.

[00:13:24] Adam Walker: Wow. That’s a beautiful analogy. I really appreciate you sharing that. So for someone that’s listening or someone that knows, doesn’t listening and knows someone that’s kind of downstream that needs to be pulled out of the river, that’s going through and experiencing breast cancer, where Can they go to find support through that journey?

[00:13:43] Cati Diamond Stone: The best place to go to find support, individualized support that is tailored just for you is to the Komen Patient Care Center, which is staffed with highly skilled, wonderful patient navigators who are as diverse as those we serve. And they can provide support to you no matter where you live. And you can access them through our breast care helpline.

[00:14:06] And you can find all this information on cohman. org slash patient care center. But we really are there to provide education, information, access to resources. Emotional support. And what’s so beautiful about this program is we’re able to hold your hand for as long as you need us. And we’ve been supporting some people going on over a year.

[00:14:29] We’re here for you and for whatever you need. And we’re not talking just about people who’ve been diagnosed with breast cancer or are currently in treatment. We’re also here for caregivers. People who have questions about when to start their screening journey. Truly, when we say we’re here for everyone, we really are.

[00:14:46] And that’s at the Komen Patient Care Center.

[00:14:48] Adam Walker: And that provides a substantial amount of support. And so if you are Going through this journey, you know someone going through this journey. There is support that’s available And I just want to make sure to say this too. This is all at no cost right katie

[00:15:04] Cati Diamond Stone: It is at no cost and it’s wonderful because these are available to people no matter where you live in the united states or US

Territory, so you don’t have to live in a magical zip code to be able to access these amazing patient navigators who are really here for you.

[00:15:19] Adam Walker: And what that means, what I love to say is on the show is that means you are not alone and that Komen is here to support you with what you need. So Cati, with that, we’ll close out the show.

[00:15:32] Thank you so much for joining us again. Hopefully we can have you on another time. Yeah. Thanks for joining us. And 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.

[00:15:57] Because ending breast cancer needs all of us. To learn more about health equity at Susan G Komen, please visit komen. org forward slash health equity. Thanks

[00:16:12] 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 at AJ Walker or on my blog, adamjwalker. com.