The following is a conversation between Paula Schneider, the President and CEO of Susan G. Komen, and Denver Frederick, the Host of The Business of Giving.
Paula Schneider, President and CEO of Susan G. Komen®
Denver: Susan G. Komen is the only organization that addresses breast cancer on multiple fronts such as research, community health, global outreach, and public policy initiatives in order to make the biggest impact against this disease. They’ve been doing this for nearly 40 years now. And here to talk about their work as well as their challenges is Paula Schneider, the president and CEO of Susan G. Komen.
Welcome to The Business of Giving, Paula!
Paula: Thank you! Thank you for having me, Denver.
Denver: Far more people, I suspect, are familiar with the organization, than the story behind the organization. So tell us about Susan Komen, the woman, and how this whole enterprise got started.
Paula: Susan was a 33-year-old woman, a mom from Peoria, Illinois, and she got breast cancer. And her sister, Nancy Brinker, and she were very, very close. And Nancy tells the story that when Susan was in the last throes of her breast cancer, right before she passed, she made Nancy promise that she would do everything she can to mitigate this disease in her lifetime. And Nancy has taken that on in a big way and started the Susan G. Komen.
And she literally started it from– there was a polo match that her husband was having, and it was a luncheon, and it was pouring rain, and she thought, “Oh my God. No one’s going to show,” because it literally was torrential. And if you’ve been in Dallas in the summer, and then you know the torrential rain pour that can happen there. And then car after car, after car showed up, and that’s what sort of launched it. And she’s turned this into a movement.
About 260,000 women a year get diagnosed with breast cancer, and that’s in the United States, not in the world…every 12 minutes, one person is expected to die. 1 in 8 women are expected to get breast cancer in their lifetime. So, it’s very prevalent. Every two minutes someone is diagnosed.
Denver: She really has. She certainly honored that promise, and then some. Paula, how many women will get breast cancer in their lifetime?
Paula: I’d say there’s about 44,000 women in the US who are expected to die from the disease in 2021. About 260,000 women a year get diagnosed with breast cancer, and that’s in the United States, not in the world. You have, every 12 minutes, one person is expected to die. You have 1 in 8 women that are — I’m sure many of you have heard that statistic before — are expected to get breast cancer in their lifetime. So, it’s very prevalent. Every two minutes someone is diagnosed.
Denver: And you were one of those eight women who got breast cancer in your lifetime. Tell us a little bit about your experience.
Paula: Yes. I was in my 40s and felt alone, and I thought, “OK. Got to get this taken care of.” And it was one of those times where I was running a big company, and it was in the middle of this massive restructure and building it out, and there were thousands and thousands of jobs there. And I felt alone.
I went to the doctor, got diagnosed with breast cancer, and I asked him, I said, “OK. Wow. This is big news. I’m in the middle of this massive restructure. What will happen? Can I have three weeks to finish this, or will I die?” And he said, “No, you won’t die, but let’s just get it done. Let’s get started right thereafter.”
And I remember that Monday and Tuesday, I had layoffs at this company that I was running. And on Wednesday I told my team that I had breast cancer, and on Thursday I went into chemo. So that was probably the worst week of my life
Denver: I can imagine. And unfortunately, this has been a family affair with you, correct?
Paula: Yes. My mom had died of metastatic breast cancer. She had it and then was fine. Then I got it. Then she got it back, and then she died of it. My brother died of prostate metastatic cancer. My sister had melanoma, but she’s fine. My husband carries the BRCA gene mutation randomly; I don’t. So, cancer is sort of a central point of my existence in my family. And I have two daughters, so the reason I’m here is for them and for everyone else’s daughters. So that’s kind of : Enough said!
Denver: This is pretty personal. There’s no question about it.
Paula: Really personal.
Denver: You were the CEO of a big apparel company. Was it hard for you to give up control and accept help?
Paula: Yes. I will say it’s one of those things. In fact, the reason that I got this job, I was accepting an award for being one of the top female women in retail. And I remember I was getting up, and I was supposed to make a speech and it was supposed to be about something that was empowering, and I was kind of supposed to tie it back to retail. And I got up, and I had nothing.
So I just did it from the hip, and I talked about I was the most empowered when I was the least physically powerful when I had breast cancer because you have to learn to accept help with grace. And it’s a new skill set for someone like me or for a lot of women that are large and in charge– taking care of their families… and I ran a very big company. And I got up, and it was very heartfelt of how I was feeling about this moment in my life.
And I ended up sitting back down next to a friend of mine who was another CEO of a large company. And she said to me, “OK. This is the strangest thing. But while you were up there giving your speech, I had an email from a friend of mine who’s a recruiter in Dallas, and they’re looking for the next CEO of Susan G. Komen. Would you ever be interested in doing that?” And I said, “Yes, I would.”
Literally, that was Thursday. Friday, I talked it over with my husband. Monday, I gave notice even though I didn’t even have an interview set up because I thought, “Whatever it is, this has now pinged me and I have to be in a position where I’m doing good, and I want to do something that is more meaningful than… and I really didn’t care a rat’s ass if I sold one more pair of jeans to Bloomingdale’s.”
Denver: I got you. It’s pretty crazy how life works sometimes. An impromptu, off-the-cuff speech and an email that comes into the phone, and the trajectory of your life has changed.
Paula: And I happen to sit next to this woman out of 1,500 women. So there were lots and lots of things that happen. And sometimes… I’m a firm believer in this metaphysical universe, and when something like that– it wasn’t like a light tap. It was a hammer on your head. –OK. Here you go. Here’s your future.
Denver: Here’s your calling.
Paula: It wasn’t a given. I didn’t have any philanthropy experience. I had raised a lot of money for breast cancer simply because I was a survivor, and I’d participated in endurance walks for five years and was one of the top fundraisers in LA all of those years. But I didn’t have the requisite experience if you were looking at a resume and saying, “Oh, OK. Here’s somebody who would be great to take on Komen because they’ve been in philanthropy their whole life.” But it wasn’t exactly what they wanted. They wanted somebody who was more of a disruptor, and I do qualify there.
Denver: You fit the bill on that one, but you’re absolutely right. So often organizations want to play it safe. Even if there’s a better candidate, they don’t want to make a mistake. So they go with somebody who’s steeped in the field. And again, as you said, it wasn’t a given. You did quit your job because you didn’t feel that you could be looking at another one when this went on. But it went on for months while you interviewed, and you really never knew what was going to come to pass… at least for 90 days or so.
Paula: Oh no. It was longer than that. And as a matter of fact, I told them I had told the board when I was interviewing with them, and there were so many interviews. It was a thorough interview process, but I told them, “Don’t ever, in the future bring anyone down to Dallas in the middle of the summer when they were trying to get someone to locate there because that is not a good plan.” But I did also tell the board that “Look, if you find someone who’s better than me… I think I’d be great. But honestly, this is so much more important than me. I will have a job. I’m not worried about that, but you need someone who can run this organization and who will do the most that they can to protect my family.”
Denver: Let’s talk about a couple of those multiple fronts that I talked about in the opening, starting with research. Komen has dedicated over a billion dollars to support research since its inception, and I don’t think there’s been many things that have happened in the field that you haven’t had your hands on one way or the other. What are some of the most promising research initiatives going on right now, Paula?
Paula: Over the last year, we’ve seen a new therapy for people with HR-positive and metastatic breast cancer. There’s new therapies for them, which is really important. And it’s important because for those people that are living with metastatic breast cancer, you need to continue to create new therapies.
One of the most interesting things that I have found when I first got in here, and I’m not a scientist… I’m not a doctor. I got in here, and I started to meet with some of the pharma companies. And because they’re the ones that are creating the drugs, and there is some alignment in what we do and making sure that our patients have the best drugs that are out there.
And when I asked them, I said, “OK. So tell me how many breast cancer drugs have you brought to market in the last years?” And some of them were like, “Two, over the last 5 years,” or “One” or “One over the last 15 years.” And “How many do you have in the pipeline?” And in the pipeline, there were like, “We have five.” “We have seven.” “We have three.” The velocity of the new therapies that are coming out are really quite incredible.
And there’s many– we have over 250 research grants that are in work right now. A lot of what we’ve done is pivot our research to actually the cancers that kill. Because you don’t die from breast cancer; you die when it metastasizes and spreads through your body.
Denver: Are we getting any closer to knowing why that occurs?
Paula: I would say yes. There are very specific new research studies that have come out, but there’s a lot of practical things that have come out, too, and I think one of the most exciting things– there’s a study called the TAILORx study that was announced a couple of years ago.
Denver: Stanford, right?
Paula: And with me, personally, going through chemo was a… I’m super strong, and it wiped me out. And I hate to even say that, those sorts of things, because for women out there that are listening to this and they’re afraid, you’ve got to be more afraid of the disease than you are of the cure, even though it’s a rough road to travel.
But this TAILORx study that went on, which is basically — and I’m going to put it in layman’s terms, because, again, I’m not a doctor — is your cancer is rated on the severity of your cancer, and if you were in the lower 15%, you probably didn’t need chemo. The rest of the other 70%, it was just the standard of care, whether you needed it, or whether it could be deemed that it was absolutely necessary or not. And now, you have about 70%. The top 15% doesn’t need chemotherapy, but the middle 70% before may not need chemotherapy because the outcomes are going to be the same. And this was based on a research project that was done via the head of our scientific advisory board who runs oncology at Stanford.
And so, those are practical matters that hundreds of thousands of women will not have to have chemo, which is so incredible because there’s long-lasting issues with having chemo, not just losing your hair and then OK, it’s over… your immune system, et cetera. So I still have some issues from chemotherapy, and it’s been 13 years.
Our 360 approach is not only the approach to research because nothing is going to cure cancer other than research. Well, actually I take that back, and I usually say this, and it’s kind of tongue-in-cheek but not really — nothing is going to cure cancer other than cash, because cash pays for research.
Denver: With regard to community health, let me ask you about the inequities in the health system. And I guess another way of putting it: How much more likely is an African-American woman to die from breast cancer than a white woman?
Paula: Forty percent on average.
Denver: Forty percent?
Paula: Forty percent. So if I or my friend who happens to be Black get breast cancer, she’s 40% more likely to die. And that is the average. OK? So you got to think about that. We have an initiative that we’re doing. It’s called our African-American Health Equity Initiative, and it’s taking on the 10 cities where the disparate death rates are the worst. If you’re in places like Memphis, it could be upwards of 80%, so you’re just absolutely screwed if you are a Black woman and you get cancer in Memphis.
So that is unacceptable. But these are big cities. You have Memphis. You have Dallas, you have Los Angeles, Long Beach area. You have D.C., our nation’s Capital. You have Atlanta. You have Chicago and Philadelphia. So, these are big cities, and we are creating interventions in those cities to find out the story behind the story and not coming in there and saying, “OK. We’re going to be the Great White Hope, and we’re going to figure out exactly how to do this, and we know what’s best,” because we don’t. What we have to do is learn. And in the process of right now is our landscape analysis that is allowing us to find out the reasons behind it, and then we can figure out the appropriate interventions.
And this whole program is based on an intervention that we did in a program that we helped with in Chicago, where they looked to see why the disparate death rates were so high. And in the South Side of Chicago, some clinics were not reading their mammograms correctly. Therefore, they were not diagnosing people. Women were dying. And so, it was more of a” train the trainers.” There’s always other issues as well that come into play like transportation; financial toxicity, of course, is huge in being able to know. But you got to find out; you would not know that unless you really dug deep. And this, of course, is hard. It’s hard, and it’s detailed. It’s hard. But it is community, right?
So when you started out by saying, Denver, that we’re the 360 approach that we have… our 360 approach is not only the approach to research because nothing is going to cure cancer other than research. Well, actually I take that back. And I usually say this, and it’s kind of tongue-in-cheek but not really — nothing is going to cure cancer other than cash, because cash pays for research. And sometimes it’s not the sexiest, but it is the longest term.
And we’ve had all of these just like our TAILORx study, things like that that have been really helpful because of money that’s been put into research. But you have the research side of it. We have the advocacy side of it and the public policy side of it, and then we also have the community side of it. We take care of women that have breast cancer today and hopefully find cures for them for tomorrow, and then we support this all with advocacy and public policy to create laws and bills that are taking care of women and their health care. And there’s a lot to be said with women in pink with pitchforks because we bring it, and we make things happen.
I think that there’s going to be the biggest cancer boom that’s going to happen when COVID continues to die down. Because what we found is that there is… between 40% and 60%, maybe even higher than that percentage, less cancers that are being diagnosed. And it doesn’t mean that it’s not out there; it just means that people are going to be diagnosed later.
Denver: No question about it. You mentioned mammograms before. Are you finding that some women are unduly delaying their mammograms because of COVID-19?
Paula: Yes. Of course. I think that there’s going to be the biggest cancer boom that’s going to happen when COVID continues to die down. Because what we found is that there is — depending on whose research you’re looking at — between 40% and 60%, maybe even higher than that percentage, less cancers that are being diagnosed. And it doesn’t mean that it’s not out there; it just means that people are going to be diagnosed later. And then, of course, the outcomes are less positive the later you’re diagnosed.
So, people — cancer isn’t canceled, put on your big girl panties, get out there, get your mammograms, get your screenings. From one woman that — If I had not had it when I was in my 40s, I would not be here today. You don’t know what you don’t know, and it is part of your wellness journey. If you want to stay healthy, then it’s the most important thing you can do. At least make sure that, if there happens to be a finding, the earlier you find it, the better the outcome. And so COVID has slowed that down pretty dramatically. And we want to make sure that this is the world we live in now, and it’s been a year. You cannot put off your screenings for a year.
Denver: That’s a long time. On the advocacy front, obviously, you’re looking to get more research dollars. As you say, cash is going to be one of the answers. What are some of the other priorities that Komen has in the advocacy area?
Paula: Advocacy is really interesting, and it’s some of my favorite work, when we would storm the Capitol and we would go and we would talk to all the Senate and Congress people and talk to them. And I’ll never forget because what we do is we train people who are like me, not people that run organizations but are breast cancer survivors or care about people that have had breast cancer. We get a lot of advocates that want to talk to their elected officials about the work that they’re doing. And I remember distinctly on this one advocacy day, I was late for one of my meetings because you literally run through the Capitol, and you have meeting after meeting after meeting.
Denver: Absolutely. Yes.
Paula: And I was supposed to be in this one, and I walked in and I was like 10 minutes late. And there was this woman in there, and she was one of our advocates, and she was showing pictures of her daughter and her three grandchildren — her daughter who is living with metastatic breast cancer. And she was saying, “This is my daughter, and her three children deserve to have their mother.” And you could tell… it was so emotion-filled, and you could tell that she was bonding. I literally tiptoed back out of the room and thought, “She’s got this. She doesn’t need me.”
Denver: Absolutely. Don’t screw this one up.
Paula: Yes, because all I’m going to do is add some commotion here because she’s telling the story that is the real story about the advocacy work that we do. And we mobilize breast cancer voices into a platform that allows for us to have systemic and lasting changes, and this is at all levels of the government because we have been working at the state level and the federal level. And sometimes, even if you pass something at the federal level, it doesn’t necessarily mean that the states have to comply. So we work in all areas.
And I’m going to give you a couple of examples of the things that we do. There’s something called oral parity. And if you are a cancer patient and your doctor says to you, “Hey, Paula. You can go home and take this chemotherapy pill and just hang out at home, and you’ll feel better being there. Or you can come in, and you can sit in an infusion lab and you can spend five hours here and bring a book or watch a movie because it’s a long time to be sitting there.” What would you rather do?
Denver: Yes. No question.
Paula: It’s obvious, right? If you have the option to stay home and have an oral chemotherapy, and your doctor thinks it’s best for you, then you should be able to do that. But one falls into prescriptions, and one falls into medical care so they may not be covered directly.
Denver: It’s an insurance issue.
Paula: So we’ve been studying that, and we’re making a lot of progress because it should be oral parity. It shouldn’t matter if your doctor tells you something. And then there’s other things. One of the things that I find absolutely, absolutely despicable is you are suffering from breast cancer. Your doctor tells you that you need drug XYZ, and this is the best thing that’s going to be for you. And you might have your insurance company say to you, “Yes, but ABC drug is pretty much the same thing, but it’s cheaper and that’s the one we endorse, so you have to try that first. And if that doesn’t work and if you’re still alive, then you might be able… then we’ll get you the drug that your doctor says you really need, OK?” Unacceptable. Unacceptable.
So there’s diagnostic exams, and we’re working on legislation at both the state and federal level to cover the costs of diagnostics exams, which are often a barrier to getting care. And you might cover screening, but you might not cover diagnostics. So you get something, you get a finding, and then your screening is covered, but your diagnostics isn’t. So, and especially if you’re living with mets, you are having diagnostic exam after diagnostic exam and you need to be able to do that, and it needs to be covered. So working through that… because that is for all women and hopefully for all people because we’re leading the charge on a lot of these and hopefully people will draft behind us, and it’ll be the same type of coverage for other cancers.
Denver: Much of what you’re advocating for is just common sense because if you come from the outside and you’re looking at this, you’ll say, “This doesn’t make any sense.”
Paula: When I first heard this, I was like, “God, that’s so silly!”
Denver: Yes, it is.
Paula: And it’s cheaper to have oral chemotherapy than it is to have an infusion site, right?
Denver: Yes, but it’s the way it’s always been done, that type of mindset. There’s a lot of that going on.
Paula: There’s a lot of that. And literally, not coming from the world of medical… In the rest of the business world, you try to do things the most expeditious way with the best results for the cheapest amount of money, and it just seems like the opposite is true here in a lot of the world of medical.
Denver: No question. I want to stay with advocacy for one second in this regard. There are so many organizations out there dealing with cancer. How would you describe the state of collaboration in the field right now?
Paula: I think nobody’s going to cure cancer alone, and we have to collaborate, and we have to be able to work together. For us as an organization, we are willing to work, to collaborate with anything that makes one and one equals three.
Now, remember, our goal is to make sure that young women and women who are living right now growing up won’t have to deal with this. So whatever it is that it takes for us to be able to work together with other organizations to make that happen, I’m in, because there’s no agenda here other than putting myself right out of a job because all I want to do is find a way to rid the world of this disease.
We’re working on collaborations in a lot of different places. We have a collaboration on inflammatory breast cancer with Inflammatory Breast Cancer Research Foundation and the Milburn Foundation. We have a unique collaboration that we’re working on with the American Bone Health Group to educate on breast cancer patients on bone health because that is part of it. I remember sitting in a meeting, and they were talking all about how chemo can hurt your bone health, and I’m thinking, “I didn’t know that,” and I literally had to go get a bone scan so I could understand: How is it going to affect me?
And our health equity work relies on all kinds of community stakeholders to make quality improvements in the systemic changes that we need to close the gaps. So every aspect of what we do has health equity woven into it, and it also has the ability to collaborate with any organization or any business that can help us.
Denver: Turning to the organizations, there’s a pretty significant restructuring going on at Komen — consolidation, closing some of your affiliated offices, et cetera. What is happening, and what are some of the reasons for doing this now?
Paula: It’s been a busy year.
Denver: It has.
Paula: We probably made more major decisions in the last 10 months than we have in the last 15 years. And I think that most will be right, and some are going to miss the mark, but every one of them has been thoughtful. And as we continue on and we looked at this and… think about what we do. We’re an organization that had 60 plus affiliate offices that were all their own single 501(c)(3)s, that all rolled into one corporate roll-up.
Denver: For federation.
Paula: Yes, it was a federated model. And now, we are moving towards being a single incorporation. And the reason that we are is because if you’re about… let’s say 50% to 70% of the revenue that was brought in, and every one of those affiliates was done through race walks. So you have race walks that are happening and… really not a time to bring 5,000 of your closest friends together to play. So, we would have been, in 12- to 18 months, we would have pretty much lost our whole community presence. So, but we did have a lot of duplication. We had leases in every one of those areas. We had, let’s say, IT or HR. We had marketing. We had PR. We had many, many things that were infrastructure-based, and the opportunity to then use our infrastructure of the headquarters for marketing because we do have world-class marketing. We have great finance. We have IT. We have all of those functions.
So being able to look down the road and saying, “Oh my God. Look at what’s going to happen to us.” And one of the big things that makes a differentiating factor with Komen is that we help women in communities, and we do that every day. We’re not just a research organization; we are a 360 organization. So, to lose community was very, very daunting. So, a month into the COVID epidemic, not understanding — you remember having these conversations. “By the end of the summer, I’ll be going on vacation because it will be tamped down.” You can’t count on any of that.
So, knowing/ not knowing what was going to happen, we had to make some really bold moves, and we did it very, very quickly and had to talk to 1,500 board members out there that were governance boards. They were the ones that had to make the decision: Do you join us, and do you help out with this new world order of Komen? Or do you go it alone and hope you survive? And the overwhelming majority of the transition has gone pretty smoothly. But it’s a cultural shift. It’s massively different.
Denver: No doubt about it. Yes. No doubt about it.
Now, are the Komen Races for the Cure or More Than Pink Walk, are they going to continue in some form in these communities? Are they really going to go away? What’s going to happen?
Paula: No. They are continuing. We have been doing virtual. We converted very quickly to virtual as most organizations did, and we created a very compelling virtual offering. Do I think it’ll replace the ability to have the camaraderie that you are all together with? Then, no, I don’t. But is it a great alternative for right now? Yes, it is.
So, I do think at some point, we’re going to bring back our world of meeting in person because…
Denver: I hope so.
Paula: Yes. Well, if that doesn’t happen, then the world’s in a much tougher shape all the way around. We won’t be worrying about any of these problems.
Denver: Yes. That’s for sure.
And speaking of virtual, even your Dallas headquarters, you’re going to go virtual, the offices. Correct?
Paula: We have moved out of all of our brick-and-mortar. We’re all working from home. We have no plans of ever going back into an office, and I know that was a big, bold move. But at this point, these are big bold times. You have to make big, bold moves. We have to be good stewards of money. It saves us a significant amount of money. We get money from people that are giving us $20 at a time, and it’s because it’s what they can afford, I want to make sure that we are spending that as much as we possibly can on mission. So, there’s a lot that went into all of these decisions.
In our meetings now, we have regional vice presidents that now run all of the people in the field. And we did hire over 150 people that came from the field. So although we have less people working for the organization overall, we have them working on the areas that we feel are the most important.
Denver: It’ll be very interesting to watch over the next couple of years as to how this works. It really, really will be, and I will be staying tuned.
Paula: Yes. We’re a case study.
Denver: Let me go back to the decisions because as you said, you’ve made more decisions in the last 10 months than the last 15 years. What’s your underlying philosophy, or what are some of the keys that you have found, Paula, to help you make better decisions and do them relatively quickly?
Paula: First of all, it’s data. It’s information. There’s the science and the art of it. We are a very data-driven organization. We look at the facts, and if you can fuse with the facts, then it’s easy to make some pretty decent decisions.
The decision to go in a completely virtual way was a financial decision. Looked at the numbers, said, “OK. This is where we are. This is what… we don’t know what fundraising will look like. So we’re going to make every precaution and cut every cost that we possibly can.” Easy decision to make. Not easy to implement, but the decision was easy to make. And then you have to judge the art of it. What’s it going to be like working in a remote environment? How are we going to communicate? How are we going to thrive, create culture? All the things that everyone else worries about as well. And we’ve been doing a pretty good job of it. We take some pulse surveys, and people are happy. So I’m happy when the workforce is happy.
And then the second part as far as going into and deciding to create a single incorporation, I’ve always believed, and I’ve been vocal about this — that I think that having a single incorporation is a better way for the organization to thrive because you have everyone rowing in the same direction. Because it may be we are thinking that the most important thing that we’re doing in mission delivery is patient-centered services because what we want to do is we want to make sure that people are getting to the care that they need and are able to have the best possible outcomes from the disease.
So there’s a lot of things you don’t do if that’s what you’re focusing on. And if you’re focusing on caring very distinctly for each patient, then there’s a lot of pass-through that we used to do to other organizations building their infrastructure. A lot of really good work, but it didn’t necessarily help patients, nor did Komen get credit for it. So, there’s a lot of things that we’re doing differently and working on our patient-centered services because we want people to stay in treatment, and we want them to get healthy again.
Denver: I think there’s pluses and minuses to each one of the models, but I do think that the single entity is more right for the times because speed has become a value in an organization. And having been involved in a lot of these organizations, sometimes the time you get the whole federated model to come together, your entity has moved on. You have to make decisions quickly. And it’s really hard when you’re calling Los Angeles and Chicago and Memphis and every other place in the country because we just don’t have the luxury of doing that.
I have always found, Paula, that some of the best, freshest, most valuable perspectives come from people like you who are leading nonprofit organizations but are not steeped in the sector because they bring an outside perspective. So I’d be curious what some of your observations were when you really got into this job– of the things that you were surprised at, that work exceptionally well, and a couple of the things you might’ve said, “Why did they do it this way?”
Paula: I will say the brilliance of the people that I work with because again, I am not a scientist. I’m a businesswoman, and I didn’t come in with a medical background at all. So other than my own diagnosis and having lived through that, learning from this group of people.
I remember I went out to dinner with the head of my scientific advisory board the first couple of weeks I was there, and I thought, “Oh my God. What am I even going to talk to him about?” We are from different planets. I’m a fashion girl over here, and he’s a scientist extraordinaire over there. And we had a lovely dinner, and during the course of it, he said to me, “Hey, Paula. If you’d like, I can give you a little tutelage on all of the medical terms about breast cancer to help you.” And I said to him, “Hey, George. Listen. Let’s stop right there. Let me tell you what that would be like.”
Denver: Who is kidding whom?
Paula: “That would be like me learning Chinese at the highest, and then having to deal with the Chinese government at the highest level. I’m going to step in it. They’re not going to take me seriously. I don’t know what I’m talking about, and I don’t have the credentials. Why don’t I do what I do really well, and you come with me to these meetings.” And he said, “OK. That’ll work.”
Denver: That will work.
Paula: And we have been a brilliant duo together because no matter what I do, I am not a scientist, and no one’s going to expect me to be one. And if I try to portray myself as a medical expert, I’m not. I’m not. I’m a business expert because I do have that credibility, and I have 30 something years of background in that. So understanding what you don’t know is as important as what you do know. So the brilliance of people around me is the first part of that answer.
And the second part is, “Oh my God. Things move so slowly.” There was more emphasis on getting jeans out the door in the last quarter, in my estimation, than there was on getting programs down and moving things along. The medical world moves slowly. The philanthropy world moves slowly in my estimation. And we are now, I will tell you, and I think my team would agree, we are moving at the speed of light. We make a decision at breakfast. We are implementing it by dinner. We’re nimble. We’re quick. We’re also using technology to scale, which in the for-profit world has been used forever. And there’s ways for us to be able to deliver mission much, much more expeditiously to more people by having the ability to use technology to do so.
And I’ll give you an example. We’re in the process of… are almost done with building our patient navigation app, and this is taking in like a page out of Telemed. But it goes back to when I got diagnosed with breast cancer, I had a patient navigator and I had probably, on average, you have between 11 and 14 doctors when you have breast cancer. I can’t remember half of their names, but Susan, my patient navigator, she was the one that told me, “Listen. I’m going to help you through this.” I followed her like a puppy, and you can imagine that I don’t follow many people like a puppy. But that woman, I can tell you exactly what she looked like, what she was wearing, and she helped me through my entire journey.
And we want to provide that service for women that are going through it, whether they’re going through it in rural Pennsylvania or in New York City. It’s someone you can take with you to your appointments because they can hear things. They can help you. We can remind you when you haven’t gone to an appointment, or you haven’t picked up your prescriptions, or all of that information. And then, hopefully, the relationship we build with all of these people and with our constituents in general. …
We are starting a Komen-led research project that is a patient portal, a patient platform, that takes genetic genomic information of women and houses that so that we can use it because that information exists out there, but it’s isolated into places that don’t share because it’s valuable information. So, for us, we want to take this, and we want to be able to do research projects that figure out and use that information and that data to figure out why cancer metastasizes years later.
Denver: Wow.
Paula: So that’s the technology base that we’re bringing to this organization that I think is… and it’s only because of the people that I have working for me. I could not do this, but I have such brilliant–
Denver: Got the right people.
Paula: Yes.
Denver: That’s what counts. You got the right people.
I was just thinking about your answer, too, about how slow it moves. I’m just trying to wonder why that is the case. And I think maybe– I have to get your thinking on this. I wonder if it’s just that people are afraid to make a mistake because it’s donors’ money. So those decisions you were talking about, they were so cautious in making those decisions, because –” What if we’re wrong?” This is not true in business. In business, you try to make right decisions, but you take risks to move things along. There is this hesitation of leaders really being able to say, “Well, if it doesn’t work, we’ll iterate, we’ll do something else.” And they just slowly drag their feet.
Because the whole irony of everything you just said is that you should not have urgency to get jeans out the fourth quarter. This is a place where you can have urgency in curing breast cancer, and it’s actually the reverse.
Paula: OK. It just depends, I guess, on your leadership team because our leadership team moves really quickly—
I will say that having thoughtful conversation about it and moving quickly is incredibly important, especially in the dynamic universe that we’re living in right now. So, I think you have to be bold now, if there was ever a time to be bold… otherwise, you’re going to be irrelevant.
Denver: No, you’ve obviously changed it. Yes.
Paula: Well, and I think that it was a lot of their inclination for the people that were there to begin with. In regular business, you go 70% there, and you make the decision and you move. We’ve made some blind decisions in the last year because who had visibility to the future? But I will say that having thoughtful conversation about it and moving quickly is incredibly important, especially in the dynamic universe that we’re living in right now. So I think you have to be bold now if there was ever a time to be bold… otherwise, you’re going to be irrelevant.
If we had not made a lot of these decisions, we would be in very, very tough shape right now as an organization. And we will be– you work in the world in The Business of Giving. I had read a statistic that said that 80% of philanthropies have less than three months of cash on hand.
Denver: That’s right.
Paula: So who’s going to come out of this alive?
Denver: Yes. Big question. That’s exactly right. And I think you’re absolutely right about relevance. Mission drift has got such a bad connotation, but actually, you have to have your mission evolve to be relevant because the world around you has changed. You can’t stay in your office and say, “We will keep to our mission the way it was,” because it’s no longer going to be adaptable.
Well, you talked about bold, so let me close with this, Paula. At Komen, you have a bold goal that you’re looking to achieve by 2026. Tell us about that.
Paula: Well, I will tell you that the Be Bold Goal was our North Star, which was decreasing the deaths of breast cancer by 50% by 2026. I will say that we are going to revamp that because realistically, going into COVID now… it was always challenging. It was always a North Star. But we had our scientific advisory board that weighed in on whether or not it was possible and all the things that we could do to get there. The two things that create challenges with breast cancer are being a woman and getting older. So you have an older population, so it’s challenging to begin with.
But I will say that COVID has dramatically decreased the possibility of making that happen because again, if you have, let’s say 50% to 60% less diagnoses right now, and people are still not up to speed of going back in and getting your screenings, you’re going to have a lot of later-stage challenges and a lot more people that are going to be dying of breast cancer and other kinds of cancers.
So, when you say we have to be nimble, and we have to be relevant, we would be tone-deaf if we stayed with that because we don’t see how it’s achievable. But we want to have impact, and we want to make sure that we are grading our impact. I’m big on: What does success look like? And then what is the accountability around that success? So coming in, in running other organizations, you did the same thing. We know what our mission is, and we know we have to save lives. We may not be able to put a number on it at this moment in time because we’re heading into a weird trajectory that we don’t know what it looks like.
Denver: No crystal ball.
Paula: Yes. There’s no crystal ball, and there’s no data. The data that we have is telling us that we’re going to have a big issue with cancer. So understanding that data, then let’s not just keep charging down the same road off a cliff. Let’s modify it and let’s move with the development.
Denver: Let’s adapt to the world around us. They’re using the real conditions. They’ve changed, and we have to adjust.
Paula: Yes, and we will. And we will continue to be nimble because I will say that my management team, there’s seven of us that sit together three days a week, and we talk about all the things that we’re doing, and we are very much in lockstep with making decisions. And there’s a lot of people in there that are way smarter than I am on many levels in different, different things that they are doing. And my goal is to bring the smartest and brightest people together to work on the biggest problem that we have in our work, in our world of breast cancer, and figure out ways to make a difference. And that’s where we live.
Denver: Tell us about your website, the kind of information you offer there, and how listeners can become involved or help financially support the work that you do.
Paula: Komen.org, and there’s always a Donate button because, again, there’s nothing that will cure cancer other than cash. But there are ways to get involved with our organization if you just look on our website, and we can talk about that. It used to be a lot easier when we had races and walks in every single city. We do have a lot of employee engagement tools that are really exciting for Komen. We also have health equity initiatives.
So if there are businesses out there that are listening to this, we have turnkey ways for you to help and to really be impactful and not just be symbolic.
Denver: Fantastic. Well, thanks, Paula, for being here today. It was such a pleasure to have you on the program.
Paula: Nice meeting you. Thanks for having me.
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