S1E8 | The Cancer Moonshot: The past, present and hopes for the future
S1E8 | The Cancer Moonshot: The past, present and hopes for the future
Greg SimonPresident, Simonovation, LLC
Dr. Pat Basu: Hi, I'm Dr. Pat Basu, president and CEO of Cancer Treatment Centers of America and the host of Focus on Cancer. Today, I'm excited to welcome a very special guest, Greg Simon, to the show. Greg has done so much in the battle against cancer over the last couple of decades. He himself is a cancer survivor and most recently, Greg led the Obama administration's Moonshot Task Force as well as Vice President Biden's Biden Cancer Initiative. Greg, it's such a pleasure to have you. Welcome to the show.
Greg Simon: Thank you. It's terrific to see you, Pat, and to be here.
Dr. Pat Basu: Well, thanks for taking the time. We've got a lot to talk about. Before we get into it, this battle against cancer is such a calling to so many of us. I know it is for you. You personally are a survivor of cancer. How are you doing? Do you mind sharing your story with us?
Greg Simon: I don't mind at all. I'm doing great. I had a checkup just two days ago. I started ibrutinib, which is a targeted therapy for CLL and some other things, a few months ago. Initially, it drives your white cell through the roof, which is scary, and then it drives them down. So I'm doing great. My hemoglobin jumped up. My red cells jumped up. My white cells started dropping. This is very different experience for me than five years ago when I had to go to Sloan Kettering and be hooked up to needles four hours a day for three days a month doing chemotherapy. So there is progress in life and there's definitely progress in my leukemia.
Dr. Pat Basu: I'm so glad to hear that. Even just you're describing your therapy, your up and down white blood cell journey, both as patients and as physicians, we seem to hang on every scan, every lab test, and it is quite the roller coaster. I often say it's as much a battle of the body as it is a battle of the mind. You and I have had a chance to talk before, and I know we're both passionate about the patient care journey, treating patients like patients, improving the American healthcare system in general. Do you mind just sharing your initial diagnosis? I think our listeners would find that to be powerful and something they can certainly relate to.
Greg Simon: I'm happy to do that. I'm not somebody who ever gets sick. I don't think I've ever taken a sick day from work. I just don't get sick so I don't see doctors a lot, or I used to not see doctors a lot. But I do travel a lot back in pre- COVID days and so I'd asked my doctor for an Ambien prescription and he said," Well, I haven't seen you for two years so you need to come get a physical," which I did on a Monday. On a Thursday, I flew to San Francisco for a conference with some doctors. As we landed, it was 4: 30 in Washington time and I thought," Gosh, it's Thursday. I haven't heard anything. It's been four days." I had had two prostate biopsies previously and I had borderline cholesterol. While I'm getting my bag off of the overhead I thought," I better call my doctor because he doesn't work on Fridays and it would be Monday before I found out." So I called my doctor as I'm still on the plane and he says," I'm glad you called." Now, remember that as we go through the story. I said," How am I doing?" He said," Well, your PSA is fine. Your PSA is fine and your cholesterol is better but by the way, you have leukemia." Now, I went to public schools in Arkansas but even I know that's not how you use by the way. Usually you say," By the way, is that your bag?" or" Did you forget something?" not" By the way, you have cancer." I said," What do you mean?" He said," You have 160, 000 white cells," and I said," Oh." He said," You need to get that checked," and I said," No, yes. Correct." Fortunately, I was visiting a doctor that I got checked. It was 180, 000 white cells. At that moment, I didn't know if I had CLL, AML, CML. My doctor in San Francisco friend was worried to death that I had maybe an hour or two if I had acute leukemia. I have lost friends to acute leukemia who literally died within a few days of knowing they were sick. Turned out that I could fly home. I was afraid I was going to be stuck in San Francisco for the duration of my treatment if I couldn't fly. I flew home and got checked every several weeks at Sloan Kettering for a year. And then after a year, I started chemotherapy. But the question that just pops out of that story is how's it possible I could have 160,000 white cells, which takes 20 minutes to figure out on Monday, and nobody called me for four days? And in fact, they didn't call me even after four days. I called them. That's a great example of what's broken about our system.
Dr. Pat Basu: It absolutely is, Greg, and I appreciate you being such a leader in the battle against cancer and the fact that you can laugh at that story and smile as you tell it. But could not agree with you more. That is just emblematic of how broken the American healthcare system is in terms of putting patients at the center. We see this all the time with patient wait times, with stories such as yours, and it's absolutely something that we need to fix. Did the doctor tell you why... Well first of all, let's be clear. You had to call instead of them calling you. It was multiple days after. Did they say why they didn't call you in the first place?
Greg Simon: Well, I called him back. I called him back a week later after I got home and said," Why didn't anybody call me on Monday?" And he said," Well, there were a lot of other tests we were doing and so we hadn't gotten all the tests in." Well, I know now because I get blood tests all the time that when I have a high white cell count as I do now, the lab report says on it panic result. But apparently, nobody panicked when that came in for me other than me. That's just a broken system because I learned very quickly I go to the doctor, I get my blood drawn, I sit there for 15 or 20 minutes and I have the results. Why it took four days when I was in danger of doing all kinds of... I mean, if I had gotten a blood clot while I was flying, I could have died. It's just inexcusable. But it goes to the basic principle here, Pat. Our healthcare system and our cancer system have never been organized with the patient at the center, and that is a cause of all kinds of problems, including why they wake you up at 4: 00 or 5: 00 in the morning to draw your blood when you're in the hospital. It's just brutal. We need to fix this.
Dr. Pat Basu: We really do, and you could not have said it better. As a physician, as a CEO, as somebody who's worked on healthcare policy, I've seen this over and over. I've been at prior stops where the system seemed to revolve around me as the physician or maybe me as the executive, but not around the patient itself. Frankly, it's one of the reasons I took the role that I'm in now because of a real patient- centric ethos at Cancer Treatment Centers of America, but you and I and others really need to bring this to the American healthcare system. Even just listening to your story, you're exactly right. Those lab values have red letters, panic values, call the patient, call the doctor, but errors happen all the time. In fact, you're probably familiar that roughly... Out of 32 million discharges in the United States, almost 8 million of them have a serious medical error associated with them. Medical error's a top five cause of mortality now in the United States and it's absolutely inexcusable, as you said. Our chief medical officer, Dr. Schink, he has this saying which is," In cancer, waiting and suffering," and I've talked to so many patients who they get the PET scan or the CT scan on a Thursday and they don't get the results back until the following Tuesday. They tell me that is the longest four or five days of their life, the labs, et cetera. And as I said before, I appreciate you telling the story, I appreciate you even being on the laugh about it, but it is not the exception. It's the rule and it is absolutely something that we have to work to change together.
Greg Simon: That's absolutely right. It's the uncertainty. When I, after a year, went in for treatment, my doctor said," We should start talking about treatment." I said," Okay." It was July and I thought," I'll take my regular August vacation and I'll come back and we'll start in September." I said," When do you want to start?" He said," Tomorrow." I said," Like tomorrow, tomorrow?" And he said," Yeah." I said," But I have a big meeting tomorrow with a potential investor. Can we make it the day after tomorrow?" He said," That's as far as we can push it." How many people could just drop everything and go into the hospital on one day's notice? But here's the other uncertainty. I went into the hospital for a three- day treatment of my first chemotherapy. After three days, I'm ready to pack up and go back to my home. He said," No, we have to keep you here until we get all your electrolytes back in balance," which nobody had told me. I ended up being in the hospital five days. I had no idea what was going to happen. When I did my first chemo round, I'm in shorts and a T- shirt and the nurse comes in in a hazmat suit. I'm like," Hey, what about me?" And she said," Well, I do this several times a day. This is going in your bloodstream so if we spill a little, it's okay." I'm like," Did you want to tell me that before you walk in with all the protective gear?" I understand if this is your daily life that to you, it's just a normal thing to be putting needles in people and poisoning them. But if you're the patient and it's the one and hopefully only time you go through this, it is intimidating at every level.
Dr. Pat Basu: It sure is. It sure is. The communication or the lack thereof of communication in American healthcare today is absolutely unbelievable. When my wife was giving birth to one of our... Actually, frankly, to all of our children, exactly the same thing. As soon as she would fall asleep, knock on the door, 2: 30 AM," We're here to take your blood." Somebody shows up to draw a heel stick from our baby daughter, doesn't even explain why they're there. And the stories go on and on from maternal- fetal medicine to cardiology to primary care. And as you said, as you move into one of the deadliest and most prevalent areas of American medicine and global medicine, cancer care, it's absolutely... Communication is so critical. It prevents errors. It makes the patient much more comfortable. It's this notion that we talked about, the Mother Standard of care, the idea that if this was your mother or your father, you would knock on the door. You'd say," Hey, Greg, can we work with you around your schedule a little bit instead of mine? Can we let you know that you might be here for a few extra days so that you can..." All of these things that we take for granted that we forget about in healthcare and it's absolutely... Cancer care in particular, I always say, is the tip of the spear of a lot of these problems in American healthcare, a system that is so expensive and cancer care costs are dramatically on the rise. For a three and a half trillion- dollar American healthcare system, it's estimated that that cancer costs are going to rise to about 250 billion of that in a few years. It's a number one cause of medical bankruptcy. You hit the nail on the head. You're a successful guy. You're a leader. You were able to on a day's notice come in but for most of our fellow Americans, they can't do that, let alone have to deal with work and the stress it puts on caregivers. So we have to find a way not only to advance the needle in cancer care, but in care delivery, accessibility, affordability of cancer care.
Greg Simon: Absolutely right. As the American Cancer Society has pointed out, the biggest determinant of who survives cancer is who has insurance. So all these debates about health insurance in America are not hypothetical and they're not just economic. They are life- threatening. If you lose your insurance, you're not going to get diagnosed. You're not going to get detected. You're not going to go get checked. I never had to worry about the cost of my care because I have good insurance. The sticker price of the care I was getting was 30 to$ 40, 000 a month and I was able to afford that because my insurance paid the bulk of it. That's not true for most Americans. In fact, my hospital roommate had to not only sell his retirement home in Georgia because it was too far from the cancer center where he was being treated, but when he came to New York to Sloan Kettering after his AML got worse, his wife had to quit her job as a marketing executive for the whole southeast to sleep on a chair in a room that the two of us, her husband and I, shared for a month. That, unfortunately, is a metaphor for cancer in America and that is what we have got to change, which was why it was so cosmic that I got a call when I was walking down the street in New York one day in January of 2016," Can you come see Vice President Biden to talk about running the cancer Moonshot?" They didn't even know I had just finished my chemo.
Dr. Pat Basu: What a story. Just thinking about the very beginning of your cancer diagnosis and like so many patients, I sadly say that it's lightning out of a blue sky. Seemed to be the case with you, but you came full circle and was asked to lead this incredibly powerful, incredibly impactful initiative. Tell me a little bit more about the mission and the goal of the Moonshot and then separately, we'll get into the Biden Cancer Initiative.
Greg Simon: Well, the Moonshot's goal was to double our rate of progress against cancer in all of its aspects, to do in five years what otherwise we would take 10 years to do in the normal course of events. So that is everything from better prevention and education, better detection, better diagnosis, better treatments and how to help people deal with survivorship, which is often forgotten. I had a terrific team of dedicated people, some of whom I'd worked with before, some of whom I had just met in the Obama administration, so it was an incredible team effort. We only had about eight people... This is not a marching army... and we had nine months. The question I always ask audiences when I'm describing this is if you had nine months to do the cancer Moonshot, what would you do? And my answer was we create an opportunity for both the government agencies that were around the table, and there were about 20 of them, and the public around the world to tell us what do they think they could do to double their impact on patients in the next nine months. It wasn't about a commitment to do something five years from now or maybe if you get a grant, you'll do this or that. When people said," How can we be part of the Moonshot?" we would say," You tell us. What can you do in the next nine months to double whatever you're doing now?" And I asked the government agencies to think about whether you're NASA, the patent office, EPA or the National Endowment for the Arts, all of whom were around the table with the traditional health agencies, where do you touch patients in their journey? And if you don't know, go back to your staff and ask them," Where do we touch these patients in their journey?" and then come back and tell Vice President Biden how you plan to double that touch, double that impact. As a result, we were able to get some amazing things done. I'll give you one quick example of how this works. The head of public health at GW whom I've known for years came to see me and said," What can we do?" I said," Why don't you get your Digerati graduate students together and come back to me in a few weeks with what you think would be the best thing you all could do in the next nine months." So they came back two weeks later and said," We have all this new science of social media treating addiction and we're going to focus on tobacco cessation in DC where you have high smoking rates and high lung cancer rates." I said," Great." Well literally next week, the head of Case Western Cancer Center Stanton Gerson came to see me with people from Cleveland Clinic and the university hospital and he said," We're really interested in working on tobacco cessation. We have all these new experts on how to treat addictions." I said," I have a deal for you," and I introduced him to the head of public health at GW. They put together a Washington- Cleveland program on tobacco cessation in high- risk neighborhoods in Cleveland and Washington, which eventually got expanded into a 20- city program. That is an... Classic example of how the Moonshot brought people together to not just do wonderful things, but to do them together. Collaboration was the key element of what we did in the Moonshot, collaboration, data sharing and involving patients at the center of clinical trial designs, of care standards, of economics around insurance and caregivers and survivorship. As an example, one of the organizations we worked with, Family Reach in Boston, after they spoke at our cancer Moonshot summit about their work to pay the bills of people undergoing therapy, they received over$ 5 million in donations and they convinced one of the major banks to suspend mortgage payments for cancer patients during their therapy with no penalty. This is the kind of thing we can do and we should do.
Dr. Pat Basu: Wow. Wow. Just incredible. Goosebumps listening to your stories there and the impact and just that sense of urgency. I love the idea of the speed because cancer... In everything, the data is overwhelming that speed to diagnosis, speed to treatment is critical. I love the notion of what can you do to double. Very clear, very powerful concept. As you know, I went to go work in the Obama White House actually shortly after the passage of the Affordable Care Act speaking of that critical expansion of insurance coverage that you described earlier, which is so critical to access to all aspects of healthcare, including cancer care. One of the areas that I had the privilege of working on was something called the National Export Initiative. At the time, we were in the throes of the great recession and it was an objective to double American exports. And again, very clear, very powerful message bringing other agencies around the table to say, What can you do to help with this doubling?" And then I love this idea of the collaboration. I think when you solve grand challenges, you have to bring partners together, public and private, academic and corporate, clinical and nonclinical. It sounds like that was one of the great successes of the Moonshot, was really using that power to bring those various teams together. Very, very powerful. And so given that, how did the Moonshot, or why and how did the Moonshot sort of wind down?
Greg Simon: Vice President Biden did ask vice president elect Pence several times if he would be willing to continue the Moonshot and we were very disappointed. But here's the thing about the Moonshot. It was done by career people, primarily, with existing budgets, although we did get an additional 1. 8 billion over seven years for the National Cancer Institute in the 21st Century Cures Act that passed the Republican Senate and House in the very waning days of the Obama administration. So the work continues and all the agencies that were part of it continue to do the work they committed to do. It's just there's nobody in the white house who's coordinating it, or I hope it's not true that they're not paying any attention to it. But even without a central office, the people working with the Moonshot programs were devoted to doing these things. I get emails now of new announcements that relate to the Moonshot not because the agency sent it to me as a member of a mailing list, but the people who sat around the table with us for nine months want me to know that they had not forgotten and that they are making progress on opening up data, on proteomic research, on clinical trial improvements. This is very reassuring. And there's one other thing about the Moonshot that... I mean, I could give you 80 examples of all the things people agreed to do that are part of the Moonshot report from large things to small things, but one of the guiding principles we had in the Moonshot was this. The moon has no light of its own. It reflects the light of the sun, and that's how we viewed the Moonshot. We didn't have the time or the money or the scale to just go out and fund a bunch of stuff or make people do things. We were reflecting the light of the communities that were involved with us. That was our mission. When people started getting the Moonshot and contributing to it, as the White House, we could shine that light and reflect that work to the public in the country and the world. That's why we often say that the Moonshot started as a program, but it ended as a movement. And we're very proud about that.
Dr. Pat Basu: Wow. Well, I love that. I love that metaphor. So, so powerful. I know our listeners are really going to draw strength from that example. I love the notion of a movement that outlives its original body or its original creation. It's an incredible power. There's a saying I love that's an old Greek proverb that" Society grows strong when old men plant trees whose shade they will never sit under." The idea that this movement continues, frankly, to this day even just with having you on the show, I think, is incredibly powerful. The Moonshot with the change of administration officially wound down, but on a related but separate note, you then went to go lead the Biden Cancer Initiative, correct?
Greg Simon: That's right. After we left office, Vice President Biden was approached by many people, leaders in the cancer community, because he had managed to do something that nobody else had done which is to get peers to listen to each other, which is very hard in science and very hard in cancer. People would do for Biden what they wouldn't do for each other, which is sad to say but it's a reality. With the Moonshot, people gave up their egos, they gave up their borders and they came together and did things together that they would never have done if Biden hadn't brought them together. And they knew from his personal experience that they could not let him down. They could never say in his presence," Oh, we can't be part of that. That's not at our university," or" I can't do that because I'm more interested in publishing this a year from now and getting some glory. I can't let people know what I'm working on." Nobody would say that in front of Joe Biden. So we started the Biden Cancer Initiative with a terrific staff and terrific board. And the focus was the same, how can we double our rate of progress, and we created the same dynamic. Over 50 partnerships, an incredible summit where patients were front and center telling their stories. Vice President Biden and Dr. Biden his wife were incredibly involved in all of this. There are some things you learn that other people had to learn by facing death, which is how committed people can be when they are told they've got five years to live or five months to live, how committed they can be not only to saving their lives, but saving others' lives. When we signed the 21st Century Cures Act, usually when the president signs a bill, you put a bunch of big hoo- has onstage and congressmen and senators. That's not what we did. We put Stefanie Joho onstage, a 25- year- old at the time young woman who had been in hospice when her found a clinical trial at Johns Hopkins for her colon cancer that was using this new thing called CAR- T therapy. Literally got her out of hospice and back into a full life, and that's who we put on stage when Obama signed the bill. That's the story we want to sell. And having lost two of my dearest and oldest friends during my time at the Moonshot and the Biden Cancer Initiative to cancer, to see Stefanie Joho onstage... She would have been dead a few years earlier... was one of the best moments of my life.
Dr. Pat Basu: We absolutely need that level of focus, that level of coordination, that level of dedication at a national level and coordination on a national level to fight this disease. I know I and millions of others are certainly rooting for, just as a nation, for us to do more to continue that ethos of doubling everything that we can do. Cancer will not wait and we have to absolutely tamp down the threat of COVID, mitigate that disease as much as possible until eventually, hopefully, we can develop vaccines that can hopefully bring it to some level of eradication or at least mitigation. But you're right. Cancer deaths, 10 million around the world every year, six, 700, 000 in the United States alone. I've spoken about something I refer to as the shadow curve, this idea that while we have been so focused on flattening the COVID curve, there is this shadow tidal wave rising of other health diseases including cancer. As you know, screenings are down for mammography, colonoscopy, PSA, 80, 90%. 20, 30 million folks have missed their screenings. It's led to a decrease in cancer diagnosis of about 30% during the period. So I totally agree. We cannot afford to do this just whack- a- mole approach to one disease. It needs to be a larger coordinated effort.
Greg Simon: Absolutely. And the other thing, Pat, that I know you have experienced and I have experienced in my life is you are a network for people who know you of how to navigate cancer. I am a network for people who know me on how to navigate cancer. That's an awful way to have to navigate cancer, based on who you know not what you know and what you can find out. It makes me very sad that people will call me three months after a diagnosis and will not know what to do, what foundations to contact, what doctors are the best in their region. So I become a hub just as you are a hub, and we have to do a better job of helping people navigate the system so that survivors aren't survivors because they know somebody, they're survivors because we make it easy for everybody to navigate cancer. And that was one of the things we were not able to complete at the Biden Cancer Initiative was it put together a road map that could be a web- based guide, just the way if you want to take a trip, if you want to eat out, if you want to build a cabinet, you can go online and find out everything you need to know to do, to be, where to go. You get a cancer diagnosis, your mind goes blank. You don't know what to do. You don't know who to call. You take the advice your doctor gives you. You don't have any way of checking it. This is not acceptable. And everywhere we went, when we met with patients and especially nurses, the first words out of their mouth to President... I mean the Vice President Joe Biden and his wife, the first thing they always said was," We need help navigating the system, and patients and caregivers need help navigating the system." When I stopped getting checked at Sloan Kettering and I had to start chemo, I had to go to a different area of the hospital and I got lost. That's sort of a metaphor for the system. I was already stressed out enough, but nobody had said," Instead of going here, you go there. Here's what you need to wear and here's what..." None of that happened. So I find myself lost, trying to volunteer to be poisoned. It was just a bad thing all the way around. But you put that at the millions of people level and there's nothing sadder for me than to find that somebody was getting the wrong care or the wrong attention and not enough care and attention because they didn't know how to do it better. That's unacceptable.
Dr. Pat Basu: It really is unacceptable and it sort of brings us full circle to where we started in terms of a... For all the advancements that we've made scientifically, which are tremendous, in the diagnosis and the treatment of cancer... And I am a very optimistic person that we will absolutely in the decade ahead make even more of those... we have not come nearly far enough in the journey, in the navigation, in the care coordination of cancer as well as other aspects of healthcare. And as you were speaking, it absolutely brings to mind... Just in the last few weeks, I've had probably a dozen friends reach out to me for themselves or family members absolutely with that word that you used. Lost. Lost in terms of what to do next, lost in terms of" We're hearing conflicting things," lost in terms of not knowing what to do next or how to interpret something that a certain facility or a certain doctor said. And that is absolutely unacceptable. It is something that we certainly can fix today because while we may not have all of the answers, we owe it to every single patient to help them along that journey. A true system needs to be a system where everybody can access it, where the variability is much smaller, where the disparities that we see in healthcare are further reduced. I think it's an incredible mission and Greg, it's a real honor to have you in that fight with us on so many different dimensions. It's a real privilege to have you on the show. Any parting words for our listeners, cancer patients out there, words of hope or words of advice that you have?
Greg Simon: Well, everybody involved in the cancer community who's a patient was drafted. Very few people volunteer to experience the life of a cancer patient. But once you're drafted, you're in an army that can really make a difference. I have been so moved and so impressed by people who commit their lives after their own diagnosis to helping others. I was recently involved in a congressional briefing on rare cancers, and one of the witnesses was a mother who had lost her two- year- old son to a rare cancer. She is still fighting for everybody else's child. I can't tell you how inspirational that is. Many years ago, Joan Didion wrote a book called The Year of Magical Thinking about her husband's cancer diagnosis. And unfortunately, we engage in the wrong kind of magical thinking which is that everything will get better, it will not happen to me. I'm sure if I do get cancer, it will be easily treated. I'm sure they're thinking about my cancer somewhere. That's magical thinking of the wrong kind. But what these mothers bring home to me... And fathers... is that the magical thinking that we need is that we can make a difference in our lifetime to affect the lives of millions of people and save millions of people by changing the face of cancer as we know it. That's the kind of magical thinking we need, not that something wonderful will happen and we don't do anything. We need the kind of thinking that if we all work together, we can make magic. That's what you are doing, which I greatly appreciate, and that's what so many parents are doing and so many of my friends who have lost spouses or children to cancer. So I just want to encourage everybody. Share your story, share your passion because together we can do this.
Dr. Pat Basu: Absolutely, absolutely. Well, thank you so much for ending on that message. Could not agree with you more. To cancer survivors out there, to cancer fighters like yourself, it is such a inspiring message to know that you've gone to battle against this horrible disease, you've overcome it and then you say," Sign me up to go back and help others with their journey, to go back and help society battle this disease, to go back and help us prevent people from getting this horrible disease." So Greg, sincerely from the bottom of my heart, thank you for all that you have done. Thank you for all that you are doing. Thank you for taking the time to come on our show today. It's been a real privilege. Really enjoyed it and so glad that your health is doing great. I look forward to talking to you again soon.
Greg Simon: Well, it's been my honor to do this and my pleasure. I just hope that people, when they get the diagnosis I got or worse, know that there are people like you and your team that are out there working for them and that we can make a difference in people's lives now and in the future. I greatly appreciate being here today.