[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. Today we’re sharing an episode of Your Healthiest Healthy, in which our Honorary Vice Chair, Paula Schneider, made an appearance. In the episode,
[00:00:23] she discusses her cancer journey, the current landscape, and Paula’s new book, Love Stays Strong, which is out today, September 2nd. Over to today’s guest host Samantha Harris.
[00:00:35] Samantha Harris: Hello, your Healthiest Healthy audience and the Real Pink audience in this special Joint podcast episode. I am Samantha Harris, your host of Your Healthiest Healthy, and a special guest host for Real Pink.
[00:00:48] I am so happy to be here on both for this incredible episode because we have none other than the one and only CEO and President of Susan G Komen, Paula Schneider, and simply put paula is a force. After an incredible career in the retail industry, working for such giants, and you probably have a lot of their clothes in your closet.
[00:01:15] American Apparel, BCBG, and the largest swimwear company in the world. As well as in private equity. Paula turned her personal passion into a new career calling. While Susan G Komen has been known, of course, as the world’s leading breast cancer organization for more than 40 years an organization, I feel very lucky to be a national ambassador for since my diagnosis originally back in 2014 and since my recurrence as well in 2024, I’ve gotten to know Paula and Paula faced her own triple negative breast cancer diagnosis back
[00:01:54] in 2007, after losing her mom to metastatic breast cancer years before. I feel so lucky to have had Paula in my corner as a champion and as a guide, and as a friend. And it goes without saying that Paula’s work with Komen is beyond personal. And now since joining Komen in 2017, Paula has helped the organization usher in new programs, support services, policies, all things that are helping families have a better chance of survival.
[00:02:30] A greater quality of life. And what’s more this year, Paula published a children’s book inspired by her own breast cancer experience, which drops today, September 2nd. It’s called Love Stays Strong, and it is a much needed book. It’s a book about the strength of a family’s love, especially during times of illness.
[00:02:52] Designed to help parents or caregivers talk to young children about any kind of serious illness in the family. And as someone myself who went through this very heart wrenching conversation, not once, but twice with my own children at very different ages, and we’re gonna get into all of that from both of our stories today.
[00:03:10] I can attest to this book being such a widely needed resources resource for families everywhere. So I am so excited to talk more about it today. So. Without further ado, please welcome the president and CEO of Susan G Komen, paula Schneider, I’m so happy to have you. Woo.
[00:03:29] Paula Schneider: Hello my love. How are you?
[00:03:31] Samantha Harris: Hello. I am good.
[00:03:32] Any day I get to hang out with you is a good day, but the fact that we get to bring. Not just your personal story, which is powerful and I think important to be able to share with our audiences. But also what we can do when looking to talk to children about a diagnosis. Again, it could be cancer, but it could be any other
[00:03:52] illness that plagues so many of us today. And then I of course want to make sure that we talk a little bit about Komens mission, some of the incredible strides that Komen has made, and then a very special new program that Komen has launched that everyone is gonna need to know about. So everyone listening, stay tuned so you make sure to hear all of it.
[00:04:15] So I think I would really love to just start Paula with, and you came from this incredible career running so many huge apparel companies. Yes. And there was this turning point after your breast cancer diagnosis dealing with triple negative, dealing with going through chemo and working at the same time and raising two girls.
[00:04:36] We both have two girls. It’s a doozy. And something changed in you for your career path. And I don’t want to make this about career, but talk, take me back to that moment. More importantly, take me back to your journey of that diagnosis.
[00:04:51] Paula Schneider: Yeah, my children were 11 and 13 at the time, and really important time for the development of girls, as you know, because you have teenagers, and when you hear that news that you have breast cancer, all you want to do is be there to live for your children so that they’re not raised without their mother.
[00:05:07] I mean, that’s the first thing that comes into your head, and that is the motivating force for you to keep going and for, my children and the work that I do here today is all about saving them in the next generation. So that’s illustrative of everybody’s girls. Right. So when I talk about the work that we do, it’s personal to me, of course, but it is really important work that happens for all women and all of the next generation because there’s a lot to be done.
[00:05:37] I was in the apparel sector, and by the way, that is no easy sector to be in. And I ran massive companies, both public and private equity backed companies for many years successfully. And I did a lot of corporate turnarounds at that time too. And I was at, I was actually getting a, an award for being one of the top female retailers in the country at a Women in retail conference.
[00:06:02] And I was supposed to get up and talk about. Something that empowered me and had to do with retail and I got up and I had nothing. So I started to talk about being the most empowered when I was the least physically powerful when I had breast cancer. And because when you’re used to being large and in charge like you and I are, and then all of a sudden you can’t be, and you can’t take care of your children or your family or your business or anything else, you have to like look inwards and just
[00:06:28] try and heal yourself and you know, with help of your support staff and your friends and your family and people really come to the table and stand up. And it was the most beautiful yet humbling experience. So it was incredibly empowering for me. I got up, I gave that speech and I had just had breakfast that morning with a friend of mine who was the CEO of Chico’s at the time, and we both were discussing how we wanted to have something, do something that was more meaningful to the world and
[00:06:59] then I got up, gave my speech, sat down next to her, and she said, well, while you were up on stage, there was a recruiter friend of mine that just emailed me and they’re looking for a new CEO of Komen that’s gonna shake things up, and are you, would you all be interested? And I said yes I would. And that was Thursday.
[00:07:18] I was running a publicly traded company. By Monday, I’d created my exit strategy from there, I didn’t even have an interview. And then I exited in the start of the interview process and here I am now eight years later.
[00:07:33] Samantha Harris: I mean, and you have always been someone from the time you were even in college, ent, entrepreneurial and creating your own major.
[00:07:42] And I love that you always reinvent yourself, but now here you were. It’s you know the time of your career where you are at the tippy top and you’re blindsided by a triple negative breast cancer diagnosis.
[00:08:01] Paula Schneider: Yeah, that was rough.
[00:08:04] Samantha Harris: What was the first thing that went through your head,
[00:08:07] Paula Schneider: well, just so the listeners all can understand, triple negative is a very difficult form of breast cancer.
[00:08:13] There’s a hundred different forms of breast cancer, right? So it’s a very complicated disease and that’s why it’s so hard to treat and it’s so hard to cure. So. Breast cancer. When I was diagnosed with triple negative, it wasn’t even called triple negative. It was just that there was this, that treated that kind of breast cancer.
[00:08:32] There was another treatment for another kind, and there was another treatment for another kind, and none of those three worked on triple negative. So that’s what it, that’s where it got the name. And then the very creative medical community and their marketing genius never changed it. So that’s became triple negative breast cancer, just because they did not have adequate treatments for it.
[00:08:52] But I’m here today and it caused a major shift in my life and wanted to change. And, you know I believe everybody needs to do good for the world. Be passionate about what you’re doing good for. It doesn’t matter what it is just as long as you are a believer and as long as you can tell the story and compel people to care.
[00:09:12] And breast cancer is the number one disease that women fear most. And it, everyone has heard the statistics. It’s one in eight. But the challenge and the bigger challenge right now is that younger and younger women are being diagnosed. I mean, you were very young when you were first diagnosed.
[00:09:30] I was in my, around your age when I was first diagnosed and with young children. And it’s right. That’s what prompted me to write the book. I spoke with four different young women in about, in the span of 30 days that were all had little kids, all had been diagnosed all in their thirties. And one of the main questions that they asked me is, I don’t know how to tell my kids because they’re gonna see mommy change and they’re gonna see that I’m gonna may lose my hair, or I’m not gonna be able to take them to school, or all of those things.
[00:10:02] And so I decided that I was going to write a book and I was going to donate the proceeds to Komen, which we did. And I, you know, thought, okay, this is a fun, cute little idea. But literally from November, I started it in January, we sold it in a bidding war. To Penguin Random House, and it’s it’s been quite the journey.
[00:10:26] So now it’s finally, we planned it to come out in September so that it would be available for National Breast Cancer Awareness Month. But I’m very proud of it, and I’m very, I’m hope it raises millions of dollars for Komen because it’s such an important mission.
[00:10:41] Samantha Harris: Well, let’s back up then to your time of having to tell your girls entering
[00:10:48] junior high and high school, pivotal moment, as you mentioned earlier in their lives. Knowing that their grandmother had died of metastatic breast cancer. And they hear mommy has breast cancer.
[00:11:01] Paula Schneider: And they were worried. The first question was, are you gonna die?
[00:11:04] Samantha Harris: How did you tell them? Let’s back it up even further.
[00:11:06] Paula Schneider: Well, I remember, you know, we had like a family meeting, if you will, and we were just getting ready to go to a Greek festival, because I’m Greek and they love that. And it was for dinner. And I thought, okay, let’s do that and then let’s go do something fun so that we can sort of pretend that this is gonna be normal from now on.
[00:11:23] And we sat in the room and I had a conversation with them and I said, listen, you know, I think my husband said Mommy has some news. And my oldest daughter, oddly enough said, you have breast cancer. I looked at her and I thought. Well, yeah, but how do you know? Like, wow. because I’d not said anything.
[00:11:41] Samantha Harris: My kids would’ve said, you’re pregnant.
[00:11:43] I’m no. I was a little past that point.
[00:11:46] Yeah. My kids would’ve still said that.
[00:11:48] Paula Schneider: Yeah. Yeah. And it was a moment. And you know, the question really was for them was whether or not I was gonna be okay. Of course you don’t know the answer to that question, but you try to create the most positive environment that you can while sort of a little bit skirting around the issue, right?
[00:12:06] And saying, there’s the best treatment. Mommy’s gonna be okay. You know, all of those things. This book is specifically for younger kids, and it’s really sweet in just the way that it talks about like, dolphins have pods and they play together and they live together, and you have a pod of people around you.
[00:12:25] And if you have any questions, you have your support and you have your friends and then you know there’s one about your brain. One page about your brain and that, did you know that the more questions you ask, the smarter you become, and so feel free to ask Mommy and daddy anything. And it wasn’t, I started out by writing this specifically before breast cancer, but then I decided I was gonna widen the aperture a little bit and make it so that it was for any disease where it was either a mom or a dad that was sick and that
[00:12:56] it was relevant. Now there’s a nod in there for breast cancer because there’s one of the illustrations shows daddy shaving, mommy’s head, and you know, so that is obviously a cancer treatment, but it could be any cancer or you get the gist, you know, and I think for little kids it was, it’s important to keep it softer.
[00:13:15] One of the things at the end of my book, I have on the back page where it’s telling, if you have older kids, here’s a link on our website of the what to say, maybe things not to say, et cetera, just to give you some tools as you’re thinking about how you inform your family.
[00:13:30] Samantha Harris: Where can people find, where can people, I think that’s one of the things when you are a parent and diagnosed, I, I lived from, you know, my dad being diagnosed with colon cancer when he was 48 and he passed at 50.
[00:13:43] I was already in college. My sister was out of college. But still ha understanding a parent, being diagnosed with anything. There is that first question that, especially when your children are still living in the home of how do, sure, how do I tell these kids who depend on me for everything. Where do people go?
[00:14:02] What is that? And I will put it in the show notes as well, but where do people go who are listening to find some of those answers, but..
[00:14:10] Paula Schneider: You just go to komen.org when you’re interested in telling pe, telling your children, and you can just type that in now to tell my children about breast cancer. The book itself is called Love Stay Strong and it’s, it on the back page has some more information for older kids or for families that need more resources, et cetera.
[00:14:30] So it’s it’s been a little a passion project of the heart. And, you know, it really was full circle because I was out over my skis. I went into my husband’s office and said, I’m gonna write a book and it’s gonna become a New York Times bestseller, and it’s gonna be for children for whose parents are sick and it’s, and all the proceeds are gonna go to Komen.
[00:14:51] And he looked up and he said, oh, I believe you. I sure. Now I don’t know about the New York Times bestselling part yet. But if more people buy it, it’ll happen and then we’ll get more money for Komen. Yeah, exactly. That is that is the goal. And really it’s just a resource for kids. And I called up a friend of mine who I’d met through Komen, who’s this who is a New York Times bestselling author, and her name’s Kristen Harel, and she’s written all kinds of novels and she’s really a great novel novelist.
[00:15:20] And I happen to be in the middle of reading one of her novels. Well. When she announced that she was gonna give her next book advance to Komen, and I thought, well, that is so sweet. And of course these things happen, right. You know, if you believe and good things come to you. And so I called her up because we had become friendly and I knew that she was a young woman that had little kids when she was diagnosed.
[00:15:46] And I said to her, you know, do you feel that there’s a need for this? Et cetera. And she’s like, oh, absolutely. I wish I would’ve had this then. And then she hooked me up with her literary agent and her publicist, and all of these people that then helped like guide me through the process, which was fantastic, you know?
[00:16:03] So it was a Komen moment helping another Komen moment, helping people with that also supports for Komen when you buy it. So there’s, you know, as a leader, you have to think of all kinds of ways to fundraise as well. And so this is a beautiful sort of full circle event that happened where I tapped into somebody that I knew who was able to help me make this project come to life that was able to raise.
[00:16:30] We, we got an advance and that went to Komen and we actually had bidding war on it, which was really fabulous. And now, you know we’re very happily ensconced with Penguin Random House and I, there’s opportunities for more books.
[00:16:47] Samantha Harris: Well, they’re definitely needed. I, like I said, I wish that I had
[00:16:52] this book when I was diagnosed at age 40 back in 2014. Sure. Because my girls then were exactly the right ages. They were three and six at the time. Yeah. And I, I remember you know, when I wrote my book, which I, by the way, writing a book, whether it’s a children’s book, fewer pages, fewer words, or a book like Your Healthiest Healthy, they are a labor of love.
[00:17:15] Getting the word out about them. It’s so if you are listening to this podcast, either on your Healthiest Healthy or on Real Pink, go out, buy it. Buy them both. Buy them, buy sure, buy them both. But definitely get her book because again, the proceeds go to Benefit Komen. The research, the things that will make thing, and we’ll talk about Komen and some of the initiatives in a little bit as well.
[00:17:39] But having the book, I actually, when I wrote my book I also looking for resources. One of the things I had learned after I told my kids, and so I was diagnosed in 2014. My book came out in 2018, and it was also giving people the resources of where to go, not just to how to tell your children, but where do you go?
[00:18:01] The mass craziness of a Google search, which do not do if you are diagnosed.
[00:18:09] Paula Schneider: No. That’s the last thing you want to do because everyone’s dying then.
[00:18:12] Samantha Harris: Every and it’s, and there’s, it’s
[00:18:14] Paula Schneider: so confusing.
[00:18:15] Samantha Harris: It’s so confusing. Everything is the worst case scenario. And it doesn’t take your unique diagnosis, especially.
[00:18:21] That’s right. Breast cancer, there are. So many as
[00:18:25] Paula Schneider: a hundred different diseases different. If you do, if you are diagnosed with breast cancer, go to komen.org because we are a truth broker. Everything is fact based. Everything is science backed. All of the information that we have is vetted, so that’s a really good spot for you to get information.
[00:18:46] Samantha Harris: That’s why in my book, komen.org is one of those resources that is just really helpful to make sure that you also tell your children, especially if they are older as mine were at my second diagnosis because it was 10 years after my. Initial diagnosis, so 2024, and my girls were now 13 and 16. So now instead of saying you know, fearing that they’re just going to Google, I said, if you have questions that you’re not getting
[00:19:13] you know, you’re afraid to ask me, please. Of course. I’m an open book and ask me. Yeah. But you can go to komen.org to get really good, solid answers. Yeah. You know, are factual. You work with Harvard for a lot of that and Yes. I’m assuming other really esteemed. It’s all science back sciences. Yep. Science.
[00:19:32] Fantastic. It’s very important. So I would love to share for the audience At Real Pink or at Your Healthiest Healthy, who have Not heard how I told my girls at three and six versus. How I told them at 13 and 16. Sure. So at three and six, of course, all they want to know is mommy okay? And can mommy pick me up at school?
[00:19:55] Can mommy pick me up physically? Yeah. And so and I didn’t, they had never heard the word cancer, neither of them. Yeah. And so why good, sure. I mean, yes. But also realizing we as adults have such heavy. A heavy understanding and a heavy connotation of what the word cancer means. And I realized this was actually an opportunity.
[00:20:16] It was an opportunity for a three and a 6-year-old. Actually the 3-year-old, we didn’t use the word cancer. The 6-year-old we did because I was concerned she would hear it then on the playground from someone whose mommy said to, oh, your mom has cancer. And then they would say it to her and she would have no idea what that was and how fe, just how scary that would be.
[00:20:36] Yes. Not understanding what that strange word is. So I explained that there, that I was going to have surgery and surgery. She’d just seen my mom have back surgery. So I said there are usually two different ways reasons that people have surgery. One, there’s something that isn’t working right in your body like Grandma, where.
[00:20:55] The doctor went in and fixed what was wrong with her back that wasn’t working. And then you saw her healing in her bed and now she’s all better and up and about. The other reason that we have surgery is because there’s something in our body that’s not supposed to be there, and that’s what’s happening with mommy and I have something called breast cancer and to really just trying to be almost matter of fact and yeah, not light of it, but also not it’s ha the scary, this is what this word is because
[00:21:22] Paula Schneider: Yeah, and then they do take your cues.
[00:21:25] Samantha Harris: Do.
[00:21:25] Paula Schneider: Yeah,
[00:21:26] Samantha Harris: they do. For the 3-year-old it was sim and by the way we paused, our six year old’s show she was watching because the 3-year-old was, it was nap time. So it was a perfect opportunity to tell them separately by, you know, alone. And she, all she wanted was to for us to get done with whatever we were telling her so she could unpause the TV show and get back to it.
[00:21:45] Paula Schneider: Which is fine.
[00:21:45] That’s what you want.
[00:21:46] Samantha Harris: Which is the best. It meant so much action.
[00:21:49] Paula Schneider: That’s why we went to the Greek festival. because you know, it was about Greek food and a party and happiness and the happy times and the celebration. I’ve heard you say how important it is to have the hope and the, and really live in the happy moments when the happy and good moments are there.
[00:22:05] Samantha Harris: Because we all have dark days. No matter what’s happening in our lives, we all have harder times. So when we can really live in the moment. Lean into the good times or create as you did with the Greek festival, those good moments, even the dark moments.
[00:22:21] Paula Schneider: Sure.
[00:22:22] Samantha Harris: With our three-year-old, all we said is that mommy has to have the doctors’ help with something that’s wrong, but it’s okay because, and we created
[00:22:33] these different, you know, daddy’s gonna pick you up at school. And then we created fun games in bed, in my bed, in the recovery bed so the kids could do things that look forward to things that we waited to open to do. New books, new art projects. Of course at 13 and 16 that was very similar to you, where we sat them down for the family meeting when you were telling me.
[00:22:57] I started to have my eyes well up and I was like, okay, I just put on makeup for you. I can’t not tie it all off.
[00:23:03] Paula Schneider: That’s why I’m not wearing a lot of makeup today. Because I remember when you and I first met and we were sitting in that room listening to the man talk about how he lost his mother and we were both bawling and so.
[00:23:16] Samantha Harris: It’s true.
[00:23:16] Paula Schneider: I knew it was a possibility.
[00:23:18] Samantha Harris: Is it?
[00:23:19] Paula Schneider: But you know what? You wouldn’t be human if you didn’t care, you know?
[00:23:21] Samantha Harris: That’s true. This is very true. And so when you were sharing about telling your girls. That just brought up everything when I sat down with my 13 and 16-year-old to tell them in a family meeting and we, our 13-year-old had already figured it out because I was going outside for a lot of phone long photos.
[00:23:38] Yeah. But my 16-year-old was out of town at a program for another couple of weeks, so we had to wait till she came back so we could tell them together. So really it was just telling the 16-year-old now, and I barely could get the words out that, of course, cancer again, emotional. No. And the and the tears and the, are you gonna be okay?
[00:23:57] And are you going to live? But having those resources like komen.org to send them to and when they’re little, having a book to be able to read to them. Yeah. That is so impactful and helpful. As Love Stays Strong. Your new book is, yeah. So we know why you wrote the book. We know now some ways to approach telling our kids.
[00:24:24] I want to transition a little bit into why Komen and Komens mission. Yeah. And how it’s different because we are very lucky as survivors and Thrivers. There are many different organizations that are helping women and men through breast cancer, through survivorship, through thriver. But why is Komen different and what are the biggest mission points right now?
[00:24:51] Paula Schneider: I’ll tell you, you know, it’s interesting because Komen was sort of when I first got here, considered sort of an older white women woman’s organization, right? And which is not the marketing that one wants for this because there, there has to be the sense of urgency. And we always talked about how great we, how many how much money we’ve spent and all of that.
[00:25:11] And I wanted to change the narrative to how many people are actually passing away from metastatic disease and like what is the sense of urgency? And creating that, first of all. So you have to create the narrative and then that everyone who works there is a fundraiser because we’re all working together.
[00:25:29] We’re all aligned. We all know that we have to help our stakeholders. Right. And our stakeholders and it, and any charity could be different, but our stakeholders here are women and families of women that have had breast cancer or are enduring it right now. And so we have gone through such a massive catharsis over the last however many years when, you know, we, I came two years before COVID.
[00:25:54] And, you know, I’m a turnaround girl. Like I, I have been in growth spurts as far as running businesses, and then I have been a turnaround girl where things, everything, what could have been wrong was wrong. And then you have to make super quick decisions. So I’ve done all aspects of it and I’ve had enough background to come in here and say, okay, what do we want to stand for?
[00:26:15] How do we want to, how do we want to articulate what we’re standing for and what do we want to do differently? And so we went through COVID hit, we went into a single incorporation versus having 63 different affiliates with their own affiliate boards. And that was, you know, you remember the day that COVID hit and you said, oh, I have a vacation in July.
[00:26:37] Maybe I might have to push it till August. But as a CEO, you had to look around the corner and say, Hey, this could last two years, and what happens then? We need to be here on the other side of it. So I made every major decision that we needed to make, shrunk the organization down by half. Built it back up in the areas where we wanted to grow and build.
[00:26:57] So we have a, about 250, and by the way, I don’t have a background in, in medicine. This is business because you are running this like a business. And you have to articulate what is, what are the problems that we need to solve? We needed to make sure that we were here because no one does what we do and no one could pick up the pieces and that we needed to make sure that the funding was intact and that we were helping people.
[00:27:23] And so we we literally have 250 research projects going at any given moment. Even during COVID, we never stopped that.
[00:27:32] Samantha Harris: 250 research projects.
[00:27:34] Paula Schneider: Yes.
[00:27:34] Samantha Harris: All different sorts.
[00:27:35] Paula Schneider: Covered all different sorts, but I shifted a lot of it towards metastatic because again, what’s the problem that we are trying to solve is for people not to die of breast cancer.
[00:27:46] Right? Like, you are here. I’m here, we’re healthy, there’s no evidence of disease, right? We need to help the people that are metastatic. Or to help us never become metastatic. So that’s where the research needed to be. So I shifted about 70% of the research to that. In addition and I’ll talk about share for cures in just a little bit because I bring that up.
[00:28:08] Samantha Harris: Yes.
[00:28:08] Paula Schneider: Yeah. We’ll circle back to that, which is part of research. But when I first got here, we were we were working on public policy and we had literally two people. So. I wanted us to build a public policy shop, so we did. We built a very robust public policy shop that has helped us and since 2019 we have passed 50 state led, Komen led state bills on the hill.
[00:28:35] For women’s health. So that’s a pretty massive number that has helped millions of women across.
[00:28:43] Samantha Harris: Well let’s, I want to pause for a second and just highlight that. So we’re, look, people think of Komen, they think of the walks, which, yeah, the fundraising tutu’s, right? They now, and then hopefully more and more people are understanding the impact of the immense research, as you just mentioned, over 250 studies.
[00:29:01] And now there’s another area that most people don’t probably know, which is political advocacy.
[00:29:07] Paula Schneider: Political advocacy, big.
[00:29:09] Samantha Harris: Making sure that we have access to care through policy. Correct. That we have coverage for insurance and there’s so Correct. So let’s, so can you just give us a couple of highlights? Sure.
[00:29:21] Takeaways of that?
[00:29:24] Paula Schneider: There’s something called oral parody. And by the way, each state is different, right? So we analyze the, we analyze it. And by the way, I don’t come from public policy. This is just business acumen of figuring out what has to happen, what problems do we need to solve, how do we solve them most expeditiously, and how do we have the biggest impact, end of story.
[00:29:43] So we are when we are having conversations about public policy and advocacy, one of the, one of, there were in many states. The insurance companies would pay for infusion, right, if you have to have chemotherapy. But there’s now a lot of new personalized medicine that allows you to take a pill form of chemotherapy.
[00:30:03] But it wasn’t covered by insurance in a lot of places because there’s also opportunity to make more money on the infusion chemotherapy. Right. So we got that passed in many states. So we’re ongoing in every state of whatever it is that they need. There’s something called the fast fail law.
[00:30:23] Okay. You’re metastatic. Your doctor tells you drug A is the best for you to live, and you’re like, yes, I’m gonna go take a new drug that’s going to help me. And you might have issues with your insurance company saying, well, drug B is very close to drug A. You need, it’s a lot less money. You need to try that first.
[00:30:42] If you if you live and it doesn’t work and you’re still alive, then we’ll pay for drug a. That should not be their choice. It that is a relationship between a woman or a man and their doctor, right? So these are the types of things. It’s just literally analyzing the landscape and figuring out where are the problems that we need to solve.
[00:31:04] So, and we are, we have been very, bipartisan in all of this. So we have as many bills that have passed in Republican states, as in democratic states. We’re probably the only thing that could be bipartisan right now.
[00:31:18] Samantha Harris: Right.
[00:31:19] Paula Schneider: But you, you know, you have to live in the world you’re living in. We did come out against the big beautiful bill because on page whatever, 877 or whatever it was there, there’s a lot of cancer research that is going to go away.
[00:31:32] And that is a big problem because we’re the second largest in cancer research other than the US government. And you know, in comparison we’re tiny and we can never pick up that much in revenue to continue doing that. I would wish we could. I would hope we can. I don’t think we, that’s conceivable because it’s multi multimillions of dollars.
[00:31:54] But you know, there are, these things are so important to the community writ large. And people should really care. So that’s the public policy and advocacy side. And then we also have the, and by the way, we have about, we’ve recruited about 140,000 advocates that work with us on that and help get people voted in, voted out.
[00:32:19] And there’s a lot of power in women in pink with pitchforks is around anything that you care and believe strongly about. Right. And then there’s the the community work that we do and the community work. We have almost a million people that come to our races and walks, in fact. In places even in the United States, but also abroad.
[00:32:41] Rome has our biggest race for the cure in the world, and there’s over 120,000 people that show up for that as the largest single event in Rome. It is the largest single event in Greece. So I mean, you know, the humanity that we can bring together around this cause is really amazing. So, and that gives people the ability to have a sense of community.
[00:33:03] A sense of caring that they are not alone in this and that what they care about, a lot of other people care about as well.
[00:33:10] Samantha Harris: Thank you for breaking that down. I think it’s important and to know that there’s a global impact that Komen has. It’s also really important to be able to share. So thank you for sharing that.
[00:33:22] Speaking of sharing, I want to talk about one of the most recent one, something that could be beyond impactful when it comes to the Komen research that’s out there, that it is poised to be able to help really save hundreds of thousands of, if not millions of lives, if we can help build this registry even more.
[00:33:49] Okay. So share with us about Share for Cures.
[00:33:52] Paula Schneider: Share for Cures was a concept that there is a lot of data out there that is incredibly important in the breast cancer community, but most of it is housed in either hospital settings or in educational institutions. So. I wanted to be really disruptive and figure out ways for us to, with my mission team, which is incredible, to figure out ways for us to get information that we could create what will be the largest database in the world on breast cancer data.
[00:34:26] And that can democratize the ability to do data, to do research because we have the top scientists in the world that work with us. With those top scientists that work with us, they have a plethora of information and bandwidth of understanding, like what are the most important things that we should be working on?
[00:34:44] Right? So if we can, we’re gonna be doing our own Komen led research. And then we are also working with big pharma, and when I say that it’s, this is not a bad thing, this is..
[00:34:54] Samantha Harris: People get scared when they hear the Yeah.
[00:34:56] Paula Schneider: People get scared when they hear that pharma has to do, they have to have in order to create any drugs.
[00:35:03] That are going to possibly help women with breast cancer. They need to do research if we provide them. We are only using this data. It’s all de-identified and we are only using it for research and that’s it. So it’s very secure. It’s very safe. It is only being used for research. It’s de-identified.
[00:35:22] I was patient number one and you.
[00:35:26] Samantha Harris: I don’t know what number I was, but I am one of those pa let’s, I think we need to explain, I’m gonna actually. Back things up for a second. Share for Cures is a patient registry where we as patients and I want you to correct me if I’m saying any of this. Yes, please go ahead.
[00:35:39] We as patients can help cure best cancer.
[00:35:44] Paula Schneider: It’s women helping other women. This is an army of women that cares because you or me, anyone else? If you if anyone asked. Any woman that has had breast cancer, would you like to help this so that your family and your friends never get it? Every hand goes up in the room.
[00:36:00] Right? So this is a way that people can share their information in a safe and secure environment that can help figure, democratize the ability to do research and to help actually find cures.
[00:36:14] Samantha Harris: So by saying democratize, the thing that, what a lot of people don’t realize is that a lot of the research that is done today might be leaving out
[00:36:22] large segments of population. Exactly. African American women we know have a much worse outcome and mortality rate. That’s higher than if you are not African American. Correct. There are certain socioeconomic communities who are not well represented in the research. So if you’re not well represented in the research, and again, please correct me if I’m wrong, then the cures or the treatments that are coming up through the research.
[00:36:49] Are not necessarily going to help every single woman out there.
[00:36:51] Paula Schneider: That’s right.
[00:36:52] Samantha Harris: Be democratized.
[00:36:53] Paula Schneider: That’s right. You are, that, that is one area of the democratization, right? Because we have everything that we do has health equity woven into it. Absolutely everything that we do. It’s not like, okay, health equity is over here.
[00:37:07] If black women die 40% more than white women. Then it has to be in everything we do, it has to be in the research, it has to be in the testing, it has to be in clinical trials, it has to be in everything. So that’s one of this will be probably the most diverse data set that exists out there.
[00:37:24] And the, with the ability and again, we have the top scientists in the world that work with us. When they work with us they’re, that’s the brain trust. I mean, literally our scientific advisory board is made up of the top docs in the world. I could never be the person that decides where we should put our money or decide you, you know, because that is not my expertise.
[00:37:47] I leave it up to the absolute experts in that area to decide here’s the 240 projects that we should be working on. This is why. Here’s the impact that we will have. It’s all about the impact. It’s all about how many people we are helping and we are helping a tremendous amount of people.
[00:38:05] Samantha Harris: That is so share for cures.
[00:38:09] If you’re listening and like, okay, wait, so how do I do that? How can I be patient number, whatever the next number patient it is. First of all, it’s very easy. You receive a test kit to your home. It’s a quick saliva and you know, spit into a tube. It comes with the mailer. You package it back up. It’s prepaid postage.
[00:38:27] You drop it in the mail and done, and all the identifying information. Is only what is actually in that saliva. It has nothing to do with who I am, what my name is, what. But this way we’re saying, here’s what my diagnosis was. Here’s what the DNA structure, whatever you’re taking, what sort of information are they able to get from that saliva sample and are they also getting any of the tumor samples?
[00:38:55] Paula Schneider: Well you do release your health records, right? So in, in my case, you know, who would like to know if someone was in there for early forties and had triple negative breast cancer and had this type of treatment and has lived through it. For, you know, 17, 18 years, someone would like to know that anyone who has triple negative breast cancer would like to know how they could be me, right.
[00:39:21] And how they could be here and watch their children get married and have children and everything else that you want to do in your life. So that to me is like, you know, and it, and as far as when we first started, it’s kind of interesting because when we first started it was very clinical, the marketing,
[00:39:36] you know and I was like, this is women helping other women.
[00:39:41] Women want to help. Women are naturally are helpers. Women naturally are nurturers, and women are the most philanthropic. Right? So let’s figure out how we appeal to other women that want to help other women. And it’s been going much better since, because we’re telling a better story. So it’s the marketing side, it’s the scientific side, you know, and having the opportunity, we’re gonna run our own Komen led research projects, which are pretty fabulous.
[00:40:09] Yeah.
[00:40:12] Samantha Harris: And here we go. And we’ll be able to have so much more research and again, the cross section of America. So thank you for this initiative. So share for cures how, if people want to. To be part of that registry. How do they do that?
[00:40:28] Paula Schneider: Please join and it’s, if you have to live in the United States.
[00:40:31] That’s the only caveat. And you can be a man or a woman, you have to be over 18, which God willing, everybody who gets breast cancer is at least over 18. And you just go to komen.org and look up Share for Cures and you will see it and it’s, it takes you five minutes to sign up. They send you a package, it takes you, you’re gonna drop off that Amazon back box anyway at the post office.
[00:40:54] Just throw it on in and, you know, it doesn’t it’s easy and there’s two way communication. So we’ll continue to tell you. You know, just like to communicate if you are on share for cures, like here’s the research programs we’re doing, and one of the first ones will be why why a hormone-based breast cancer, which is the majority of breast cancers recur years later.
[00:41:16] So how do we stop that? So, you know, if you’ve had an hormone based breast cancer, you really want that to be happening.
[00:41:23] Samantha Harris: So, wait, I’m just I’m learning something new at the moment as a hormone positive breast cancer survivor who had a recurrence 10 years after initial diagnosis, I did not know in all that I’ve known that what you just said.
[00:41:38] Can you repeat that about it being actually common for it to recur.
[00:41:42] Paula Schneider: Well there’s a lot of differentiation on what percentage. And I always hate to do any, you know when I talk to my doctors, I said, don’t give me a percentage of what my chances are because you don’t know me.
[00:41:54] Samantha Harris: Right.
[00:41:55] Paula Schneider: And you know, and this is a very personal thing, so, but there are recurrences that happen as we know, because you had one.
[00:42:05] And there is no one that lives a healthier lifestyle than you do. You still had a recurrence. You’ve done everything. I mean to the, you are one of the healthiest and most lovely people I know, but in, in all that you do and all that you surround yourself with and every chemical in all of those things, I mean, that’s part of your Healthiest Healthy, and you still had a recurrence.
[00:42:27] So what we are looking at is finding ways and spending the time, the money on the research as to the why. Right, because we have to break the code, and if we can help break the code on this, then we would be able to save more and more lives. Yeah. And you know, the other, there’s a lot of things that we’re investing in that it are pertinent to the times, you know, because I feel like share for cures when I first got to Komen and that would not have been anything that we would’ve ever done.
[00:42:57] And, you know, we were an affiliate model. It was a very state organization. There was a certain way everyone did things and so we’ve mixed it all up.
[00:43:04] Samantha Harris: Yes.
[00:43:05] Paula Schneider: And and now, you know, I think it’s a much more cohesive organization with our the way that we’re delivering mission and how we’re helping people, which is the third part of our stool.
[00:43:17] So the research and cutting edge research, you know, one of, we’ve been investing in AI before it was called AI and it was machine learning on on figuring out ways that where we’ve been supporting a scientist to, to read mammograms years earlier to find breast cancer. So with using machines, using AI, basically.
[00:43:38] Right,
[00:43:38] Samantha Harris: right.
[00:43:39] Paula Schneider: And you can, and she does this fantastic speech that, that I saw once when we were investing in her she was a young woman that had breast cancer, but she was able to get her mammograms from three years earlier than she was detected with the naked eye. And she, it was detectable then at an earlier stage.
[00:43:57] So if things like that become standard of care. Then what happens? Right? Then all of a sudden you’ll have if for those that get mammograms, which ladies, big girl panties on, go get your mammograms. If you’re stage zero one you’re gonna have a better outcome than if you’re three or four. Right? So that would be, it would change the world of so many.
[00:44:22] You know, so there’s a lot of really interesting research programs that we’ve invested in that I’ve had to learn. You know, because again I came from the retail world, private equity world. The buy, sell side, the fashion side, the running giant retail companies. I did not come into this knowing about cancer other than having my own diagnoses and you know, and you learn what you learn, but it’s still very limited.
[00:44:48] I’m still not walking out of here with it as a doctor. Right. But we have made substantial strides. And the third area, you know, there’s the research, there’s the public policy and advocacy. And the third area that is really important is the community work that we do. Because this is, we are a hyper local, scalable organization because we care very much about what happens in every community.
[00:45:13] And because we want to make it so that you are, you have a warm hug wherever you are. And we put on hundreds of events a year at massive scale. And it’s, you know there’s a lot of effort that goes into that. And, you know, architecturally you have to make sure that you’re operationally extremely sound to be able to do.
[00:45:33] To do that, and you also have. We changed the way that we did mission delivery after we went through our single incorporation. And what we did was before it used to be where if you were in Sacramento and you had breast cancer, and we didn’t have an affiliate in Sacramento, but we had one in San Francisco, they couldn’t care for you.
[00:45:55] You couldn’t help you. So what we did was said, okay, what’s the problem? The problem is that we need to help all women and throughout the United States. And so we created our patient care center and we, instead of, you know, where each individual affiliate got to spend money, however they thought would be best or most impactful and did amazing work.
[00:46:17] But you know, there’s, paying for yoga classes for survivors is a nice to have. It’s not a have to have. So what we do is we have our financial aid to keep people in programs. We have our helpline that 60,000 people called last year that we created. That helpline allows for everyone to have the opportunity to speak with someone that can help guide them on their path, and we spend as much time with them as they need and we are helpful and we.
[00:46:45] You know, know, because of the ecosphere that we’re in, where the best places are for them to go. Where, you know, because we’ve kept all that tribal knowledge even going through the the massive reconstructive re restructuring that we did.
[00:47:00] And then we built back into ways that are where we have far less overhead and more money goes to mission.
[00:47:09] Samantha Harris: Well, the mission is getting accomplished more and more with every day that passes and, yeah. Paula Schneider, you are a force to be reckoned with in every amazing way possible. I appreciate you, everyone. You have to check out the new book. Love Stays Strong with all. Love stays strong.
[00:47:29] Paula Schneider: Love
[00:47:29] stays strong, and it does.
[00:47:30] There we are. Where? There we are.
[00:47:32] Samantha Harris: Yes. Love. Stay strong. It’s so
[00:47:33] Paula Schneider: sweet. Yes,
[00:47:34] Samantha Harris: I love it. And again, the proceeds of Love Stays strong go to Susan G Komen. Go to komen.org to learn more about all the services, the helpline, and also share for cures if you want to be part of the registry, as I did. And I look forward to talking many more times with Paula at all of the great events.
[00:47:57] So look for the local events in your area and different ways to donate, of course, and support Komen, just go to komen.org and share with all your friends. Thank you, sister. Thank you so much. You guys listening. Go on and have your Healthiest Healthy life possible, and we’ll start That’s right the next time.
[00:48:17] Okay.
[00:48:20] Adam Walker: Thanks for listening to Real Pink, A weekly podcast by Susan G Komen. For more episodes, visit Real Pink.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 adam j walker.com.