Oncology Etc: Dr. Miriam Mutebi on Improving Cancer Care in Africa

"Various places on the globe lack the proper knowledge, infrastructure and workforce to adequately treat cancer. In Africa, one doctor is focusing her efforts to change all that. This ASCO Education podcast spotlights Dr. Miriam Mutebi, the first female breast surgeon in Kenya. One of Dr. Mutebi’s goals is to improve women’s health and cancer care in Africa and includes attaining her pilot’s license to reach remote areas of the continent. Dr. Mutebi reflects on her life growing up in Kenya (1:21) and her inspiration for getting into medicine and pursuing what was at the time a male-dominated specialty (5:07). She also details how cancer care has improved in Kenya in the last decade (12:49) while there are ongoing challenges of working in low-resource settings (23:25). Speaker Disclosures Dr. Miriam Mutebi: None Dr. David Johnson: Consulting or Advisory Role – Merck, Pfizer, Aileron Therapeutics, Boston University Dr. Patrick Loehrer: Research Funding – Novartis, Lilly Foundation, Taiho Pharmaceutical Resources: ASCO Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan (Part 1) ASCO Podcast: Oncology, Etc. – Global Cancer Policy Leader Dr. Richard Sullivan (Part 2) If you liked this episode, please follow the show. To explore other educational content, including courses, visit education.asco.org. Contact us at [email protected]. TRANSCRIPT Pat Loehrer: Welcome to Oncology, Etc. an ASCO Education Podcast. I'm Pat Loehrer, Director of Global Oncology and Health Equity at Indiana University. Dave Johnson: And I'm Dave Johnson, a medical oncologist at the University of Texas Southwestern in Dallas, Texas. Pat, we have a terrific guest today that ties in very nicely with your interest in global health. I'd love for you to introduce her. Pat Loehrer: Thanks, Dave. Battling cancer is truly a global effort, both in research and in treatment. However, there are various degrees of quality in these fields, depending on the economic health of a particular region. Our next guest is trying to optimize cancer care in Africa. We're very excited to talk to her. Dr. Miriam Mutebi is one of the most prominent cancer doctors in Africa. Dr. Mutebi is the first female breast surgeon in Kenya, and she's currently assistant professor in the Department of Surgery at the Aga Khan University in Nairobi, Kenya. She's on the board of directors for the Union of the International Cancer Control. She has trained and studied at top hospitals in New York and South Africa. Dr. Mutebi is so focused on increasing women's health in Africa that she's trained to be an airplane pilot in order to connect with hard-to-reach areas. Disclosures for this podcast are listed on the podcast page. Thank you so much, Dr. Mutebi, for joining us from Kenya. Can you start off by telling us a little bit about what it was like growing up there? Dr. Miriam Mutebi: I grew up in Nairobi, which is a pretty urban setting to grow up in. So, most of my childhood was spent…I think it was probably a much simpler time where, you know, you would play in the street, go off to somebody's house, spend the rest of the day there and come back at the end of the day. But in terms of growing up, I think I was one of those super nerdy kids, for want of a better word. One of the sorts of things that got me interested in reading and learning and challenging myself was actually my dad. Because what would happen was we had to go to school, I would say almost about 30 kilometers bus ride, and my dad would be like, “Well, if you're on the bus for that long, you can as well, you know, carry a book and made it nice and exciting.” So I remember sort of discovering the library at my primary school and going like, “My word!” Because you get access to all these different experiences and worlds. I mean, you're going in and reading, you know, The Chronicles of Narnia, you're reading about Enid Blyton and different experiences, you're reading all these different worlds and getting to, you know, identify to some extent with the core values that exist. It doesn't matter where the books were centered. And so that for me was an almost, I would say, idyllic growing up, because for me it was like, “Yes, books, check; running around, check.” That's, I think, what I remember most about my childhood. Dave Johnson: It sounds like your father was a powerful influence in your youth. Can you tell us more about your father? Dr. Miriam Mutebi: Sure. My dad, how old is he now? He's going to turn 74. One of the things that he always says, “It costs you nothing to be kind.” And so he would generally– Sorry, I'm just going to stop a little bit. I'm getting weepy. Dave Johnson: I'm sorry. Dr. Miriam Mutebi: It’s okay, it's okay. Shame. Dave, you pushed the button. Dave Johnson: It's not our intent to push a button. It sounds like your dad's a wonderful person. Dr. Miriam Mutebi: No, it's fine. Pat Loehrer: Both Dave and I have daughters, and we feel the same way. So as weepy as you're getting, I can guarantee you that he's going to feel the same way on the other end. Dr. Miriam Mutebi: No, it's just that he hasn't been well recently, so it’s just– Dave Johnson: Oh, I’m sorry. Dr. Miriam Mutebi: Yeah. Okay, cool. Let me see if I can stop getting a little weepy. Yeah. So one of the things that he frequently says is that it costs you nothing to be kind, and I think that's one of the things that he sort of instilled in us that you need to think beyond yourself. You always need to sort of think about what is the other person going through and how can I help to make it better. Now, my dad, he has a really interesting sense of humor. I think it's where I get my cheesy humor from as well. But he always talks about what we call the 11th commandment, which is, don't take yourself too seriously. And so I think that was part of the grounding steps that he sort of helped to instill in us because he was working– I mean, sort of looking back, our parents, I would say, got married at a very young age and had several kids that they were raising. And sort of looking back, you're thinking they were probably just doing the best that they can, right? But I think he did a fairly decent job, I hope. Dave Johnson: So, Miriam, when did your interest in medicine begin, and who was the inspiration for that? Or if there was someone that inspired that? Dr. Miriam Mutebi: At the end of high school, I remember I wanted to do five or, rather, was it six different things. And so I wanted to do medicine, I wanted to write, I wanted to do architecture, I wanted to do law, I even forget what the other things were. There was like two other things on my to-do list. And I think part of the genesis of that was because, as part of the high school training that we go through, we had to do the international sort of baccalaureate, and what that entails is we have to do components of creativity, action, and service. And so at the end, I'm like holding back to father dearest, and I'm like, “Dad, I have six different things I want to do, and I don't really know about.” And he was like, “So why don't you spend a bit of time, sort of just going through each of those, like shadowing these different specialties?” And so we managed to track down his lawyer friend, spent time in the hospital, spent time in the pharmacy, just shadowing the pharmacist. I actually went to work briefly for a publication house. Eventually– Oh, yes, in architecture as well. So then I managed to narrow it down to, “Yes, okay, I want to do medicine, and I want to write.” And so I went back to my dad and said, “Dad, okay, I have two things I want to do.” And my dad was like, “Well, if you do medicine, you can write. But if you write, then you might not necessarily be able to do medicine.” So that's how I sort of wandered into medicine. Although I still say there's still the great African novel waiting to get out. But again, with medicine, I think I'm guilty of what we call ‘end of rotationitis’, where at the end of the day, you finish a rotation, and you're like, “I can do this. I can do this.” So I think going through different rotations– I think for me, the drive– Well, the slow narrowing down to surgery was really around, unfortunately, the time when we were doing our rotations, and this was just really at the start of the 2000s in Kenya. And the challenge around that time was we're really just at the tail end of the HIV epidemic, and not everyone had access to antiretrovirals. And it was an incredibly harrowing time, I would say, for the healthcare profession, just because there was still a lot of stigma around HIV. And what was happening was that we would go to the wards and find patients had been abandoned. And there was a general sort of pervasive sense of hopelessness because people didn’t have access to the medication, they’d been abandoned, and unfortunately, not much was being done in terms of active management to patients. Whereas then that was like on the 7th floor, and then you would go four floors down to the surgical ward where patients come in, they’re bleeding; you take them to OR, they get better, you send them home. And so, for me, the timing was like, “I need to do this. At least I could see where I was making an impact.” And so that’s sort of how I wandered into surgery. And I’m sure, as I said, with, of course, the developments now, the experience, of course, for medical rotations, they're entirely different, but that’s how I sort of ended up in surgery. But then, how I sort of found myself in breast surgery was actually because– for me, what stood out about my breast rotation was really looking at what we were reading in the textbooks, which was breast cancers, the disease of the sixth and seventh decade and a “poster child” for this is the elderly nun who’s never had any children, who’s had this prolonged [inaudible]. And I’m sitting there and looking at the clinic, and I’m like, “These patients are in their 30’s and 40’s. All of these traditionally protected factors, like having multiple children, having breastfed, ticking all the boxes, but they're still coming in with these kinds of cancers.” And so just thinking this is totally different from what the textbook is saying, and somebody needs to get to the bottom of this, and that’s how I found myself going in along breast cancer surgery and also research into women’s cancers and things. Pat Loehrer: My sense is that Kenya and many African nations were male-dominated. I don't know what it was like for you going to medical school, but particularly in surgery, it tends to be a male-dominated field. What was that like as a woman? In many ways, I think you were breaking some glass ceilings. I'm sure other women are doing similar things, but tell me a little bit about that experience. Dr. Miriam Mutebi: I would say bewildering for both parties. Because we had to do several interviews just in different institutions before getting into a surgical residency, and I remember these senior professors sort of peering down their glasses and looking frankly bewildered and asking the most bizarre of questions, which I don't think anyone would sort of get away with in this day and age. I remember somebody asked me, and this one always stands out in my mind because somebody asked me on the interview route, “So what happens if you get a patient in ICU and you start to cry?” I'm like, “Well, first of all, I'm guessing that I am crying because I'm having a bit of empathy for the patient. And I think that actually probably makes me a better clinician because I am really truly seeing the patient rather than bed X with diagnosis Z. This is like Mary, mother of one, two, three, and whatever.” But it was really bizarre. Then somebody asked me as well, “Okay, so what happens when you're on call, and you have to breastfeed?” And I'm like, “Well, let's see. This is a tough one.” You could tell as well that they were really out of their depth. So,  eventually I settled on the Aga Khan just because, in terms of the faculty and the interviews, I got a sense that they were a little more open to the idea. And that's because I think one of my earlier mentors, Prof. Raja, who is our former chair of surgery, had come in from the Aga Khan in Pakistan. And for him, it wasn't anything unusual to see women in surgery. So, like, “Yeah, come along. We'll train you and stuff.” And he was also pretty inspiring in terms of the decision to get into surgery because, for him, their approach to at least surgical training– and we always tease him and say, we all drunk the Kool-Aid because we kind of came back. Because it wasn't about just training surgeons for surgery's sake, it's about how do we become leaders, how do you impact care in your region. And so it was never about just learning surgery; it's how do you use the tools that you have in order to improve the health of those around you. In the Aga Khan, you're sort of, one would say, in a position of privilege. Just the backstory to those listening who might not know about the Aga Khan, it's a private university hospital. But I mean, as a private center, then, of course, I would say there isn't any difference, one would say, between the Aga Khan and most of the international hospitals anywhere in the world. But it was always sort of driven into us that this is a privilege that you're having. And how do you use this privilege to elevate the communities around you? Pat Loehrer: Let's talk about breast cancer, if you will, in Kenya. You mentioned it that when you first went into it, patients were coming in with advanced disease, they still do. But how has the field of medicine changed in Kenya during your professional lifetime as it pertains to breast cancer? Dr. Miriam Mutebi: While we still have the majority of patients diagnosed with advanced disease, the scenario ten years ago was that patients would get diagnosed with advanced disease and frequently would not complete their care. And if we did a deeper dive into the reasons behind this, we saw a constellation of factors. One being the fact that patients were having to pay out of pocket, resulting in financial toxicity, catastrophic health expenditure. And then the other major barrier was the health system itself. And again, to some extent, that still exists where we know, at least on average in sub-Saharan Africa, patients are going to see 4 to 6 healthcare providers before a definitive diagnosis of their cancer is made, which of course, again, translates into delays in ultimate treatment. Another area that we frequently don't necessarily talk about as much are the social-cultural barriers that exist and, to some extent, are still pervasive in some communities. What we see is, one, there’s a lot of use of alternative therapies. There is still quite a bit of stigma around cancers. There is what we call collectivism, where we always say in Africa, ‘our community is our strength’. But sometimes, that sense of community is a double-edged sword because then, if the patient is losing agency, then that becomes a real concern. Because what we find, for instance– I’ll give you an example, I'll have a patient come in and discuss, and maybe she has early cancer, and discuss the options of having breast conservation versus a mastectomy. And then you will find maybe she goes home to have a think, and then a couple of days or whatever later, there's a community gathering, and the clan elder is saying, “We have decided.” And I’m like, “Who’s we? That’s not your breast coming off. Like, what right do you have to decide on patient decision-making?” But you see, as much as we would like to sort of say have the patients have autonomy over the decision-making, it's really a question of equity and access to care. Because even if you're giving the patient autonomy, and she’s saying at the end of the day, “Well, they’re the ones paying for the treatment so let them decide what it is I’m going to have”, then we haven’t really adequately empowered our women. And so those are some of the challenges that existed, I would say, about ten years ago. We’re definitely seeing an improvement. One in the patient’s ability to pay, and this, I think, has been a concerted effort by the government to come up with a National Health Insurance Fund, which initially wasn’t covering cancer care but has definitely helped to ensure that the number of patients who actually complete their care or going through their entire cancer journey are probably more.   I remember when I was doing my internship, there were like truly heartbreaking because, as interns, we would have the medical internists sometimes– and because there weren’t that many medical oncologists– prescribe the chemotherapy and as interns, we were the ones who would administer the chemotherapy. And so, you would have a patient come in and it involves– Basically, we give the prescriptions like chemotherapy, but they’ll also have to buy their own saline, the IV line, and everything else,,, and then they get the first cycle, and they just disappear. And then those were the times when mobile phones weren’t that common. They literally just disappear. But then they come back six months later, and they’re like super excited, and they’re like, “Doc, we’ve raised enough money for the next cycle.” And we’re like, “Well, it doesn’t quite work like that.” So, with the National Hospital Insurance Fund, it’s not perfect, but we definitely see more patients going through the entire care continuum, which is gratifying. I’m sort of putting on my  [inadudible] hat as the chair of Kenya Society for Hematology and Oncology, and we’ve been working closely with the National Cancer Control Program, really to advise the National Hospital Insurance Fund on maybe getting more comprehensive covers. Because what was happening initially was, for instance, they would cover maybe four cycles of chemotherapy. Then the patient has to come up with the remaining four, for instance, and sometimes if they’re not able to afford that, then you’re sort of giving them the side effects without the therapeutic benefits of some of these. So they are currently in the process of really looking more at treatment plans, and that’s also been, at least, a truly– And the fact that they are willing to listen has also at least been a huge stride. And then, of course, in terms of the real efforts, I would say by the National Cancer Control Program to ensure some of the decentralization of cancer services. Initially, we had only one radiotherapy center at the tertiary referral hospital in Nairobi that was having patients traveling from across the country, 400 kilometers or more, coming in. And you come in from a rural area, you come into Kenyatta and somebody tells you have to live there for a month, you have no family, nowhere to stay. People say, “You know what? I don’t need to have this stage or rather have this additional treatment.” And so with the deliberate development of or decentralization of the radiotherapy services, we now have at least regional centers in planning and so really looking at how do we bring the services closer to people. And so, we now have, in addition to the tertiary referral centers, we now have two regional centers in Mombasa and in– Pat Loehrer: Eldoret. Dr. Miriam Mutebi: Yes. I think beyond Nairobi, Eldoret, we now have a comprehensive center in Mombasa. Nakuru’s just launched a comprehensive center and Garissa as well, so really looking at enhancing our capability to bring these services closer. And there has also been the development of the chemotherapy units across the country that have at least tried to ensure that these services are more readily accessible to populations. And really just underpinning that with the support from the National Hospital Insurance Fund has helped to basically have more patients completing their care. One of the other things that I think deserves particular mention is really the grassroots advocacy that has really tried to increase awareness around cancers. And as a result, we definitely are seeing, as much as we are saying the majority of patients are still diagnosed with advanced disease, we are definitely seeing the entire continuum all the way from screen-detected tumors, early stage I, stage II cancers to more advanced tumors. So with that, it also really shows that there is a continuing consciousness that’s really sort of driving these education efforts and awareness in the community. Of course, we definitely do need to do more because we still see that the advocacy’s efforts sometimes tend to center largely around urban areas. And also, the question is how do we then sort of percolate that down to more rural areas? It’s definitely something that’s improved in the last ten years. And then, of course, we’ve also seen an expansion in the cancer workforce. And that, I think, has also been largely driven by the fact that we’re having in-country training for clinical oncology, medical oncology, gyne-oncology, so we’re really thinking about how to expand the workforce but– Of course, we are still looking at the patient-to-population ratios, those are still pretty low and we still recognize that there are deficits along the care continuum. But we’re now having pharmaco-oncologists, we are having psycho-oncologists, increase in palliative care specialists. So there’s definitely been an exponential growth of all the cadres of healthcare providers, whether it’s oncology nurses and things. We’ve had an oncology nursing chapter now that’s been developed. We really see the rise of the professional societies like the Kenya Society of Hematology and Oncology, and there is a lot of crosstalk between the academic institutions that are running the oncology training programs. So it’s really a positive move in the right direction, but I think what needs to happen is, as I would say, more deliberate investment in the workforce. Because, again, even as we increase the spectrum of the oncology workforce, there’s really a need to carry along the primary care providers because they invariably are the gatekeepers to access. And so unless the primary care providers are empowered and knowledgeable to facilitate early and timely diagnosis and referrals to the appropriate pathways, then it doesn’t matter how many people or how much of a workforce you have on top of the pyramid. It just means you’re invariably going to be still getting patients diagnosed at later stages. And so there’s also been efforts around that to come up with, from healthcare provider courses to educating common signs and symptoms. This is something that the Kenya Society of Hematology and Oncology has been doing in collaboration with the National Cancer Control Program. There’s a deliberate effort to come up with an online platform that are actually able to give real-time information to primary care providers. And so, I would say there are definitely steps in the right direction, but there definitely needs to be more investment in the entire spectrum of care. Dave Johnson: Miriam, what you've done is astonishing. What you've just described is an amazing infrastructure in a relatively short period of time. What you're talking about took us in the United States half a century. You're trying to do that in a matter of five to ten years. You've trained in both Kenya and in the United States. I wonder if you might just take a few moments to compare and contrast those experiences. Dr. Miriam Mutebi: In terms of working in different spaces and sort of working in the US, working in South Africa, working in Kenya, what you realize is perhaps a very different patient profile. Whereas in countries like the US, where you have vibrant screening programs, and you're definitely having a lot more discussions around 4-millimeter, 5-millimeter tumors that you are doing an MRI-guided biopsy for and maybe a lot more screen-detected tumors. Whereas working in settings, especially when you get out of the urban areas, whether it's in Kenya or South Africa, you find that you tend to have a lot more diagnoses of patients coming in with fungating tumors and advanced disease, and so it's really that spectrum. And that's what I'm saying in terms of the current state of flux that we're in. We're now, as clinicians, at least working in Nairobi, you're sort of seeing the entire spectrum and much less and less of the sort of fungating tumors. So I think in terms of the principles, and the good thing is that irrespective of where you are, principles do not change. But I think you sort of have to rapidly innovate and iterate in settings where you may not necessarily have a say, MRI to do an MRI-guided biopsy, but you also sort of look at what makes sense for the patient. Working in lower-resource settings, I think, is actually a good thing because it challenges you to constantly think about value-based care. People talk about value-based care as a concept, but you're doing it on a day-to-day basis, even between different patients in clinic, because you have to think about the cost and you have to think about how do I deliver care that's still of good quality, that's not necessarily going to break the bank. And so these are some of, I think, more challenging or at least questions that we have to think about deliberately. Whereas in the US, if you have insurance, then it’s pretty much carte blanche, for want of a better word. Which we did realize, especially with COVID - and I’m sure Pat and Dave you can bear testament to this - these disparities exist globally. And so you’ll find that in your patients who have no insurance or are underinsured, they’re still coming in with the same, sort of, challenges. I was talking to my colleague at NYU who works at Bellevue. When she was giving me the profile of her patients, it was interesting to see that there wasn’t really– and these are patients who don’t necessarily have insurance, there really wasn’t any difference in the images we are seeing from patient they’re seeing and the patients we’re seeing. So really it’s an opportunity for us to sort of rethink collectively our approach to care and really thinking about how do we provide quality care. Pat Loehrer: I was in Washington this week, and President Biden had a three-day African US summit, and at the end of this, he basically pledged to spend $55 billion in Africa to help relations with them. We also had a discussion about the Moonshot 2.0, in which President Biden wants to end cancer as we know it, with a particular emphasis, I think, and now, in linking with LMICs. Briefly, what would you tell President Biden in terms of what would be very helpful for the United States to help with the cancer problem in sub-Saharan Africa? What would you say in a sentence or two? Dr. Miriam Mutebi: As we say, perhaps have the Moonshot, but stay grounded in the sense that– even before we think about complex molecules, we are still struggling as a continent with the basics of care. And so, investing in health systems and the basics will ultimately give more or improve outcomes rather than sort of focusing on specific molecules. So if we have the basics in place to deliver the basics of care, then that would go a long way toward shifting outcomes. The other bit that does need to happen is, again, with research because there is a paucity of cancer research. We did a recent bibliometric analysis and found that as a continent, we are only contributing to less than 8% of all sort of cancer research globally. And we do know that one, we have, I would say, the breadth of diversity in terms of genetic diversity. We do know that the responses to care and treatments are different. We do know that we do need to think about implementation science and what structures we can put into place, and what strategies. What works in different settings might not necessarily work in ours, and it does need to be backed by evidence. So there are opportunities to expand care and strengthen systems, but really do this in an evidence-based, pragmatic way that ultimately [inaudible] its own outcomes and outputs for the patient. Dave Johnson: Thank you for that, Miriam. Pat Loehrer: Well said. Thank you. Dave Johnson: Great advice. I hope the President is listening. Pat Loehrer: Dr. Mutebi, what was the first book that you remember that you really loved? Dr. Miriam Mutebi: I think it was actually The Lion, the Witch, and the Wardrobe. It was just the whole sort of just stepping into a different world. And then, of course, we all had crushes on Aslan, the lion, but it was more because he was like this sort of guy who would swoop in and was morally just and get to mediate the world. And so I went through the whole series, I just gobbled it down, and I think that’s one of the things that really stands out for me as one of the books that I sort of remember early on. Pat Loehrer: It's such a great pleasure today. I'm really excited. We're typically talking about books. And here's a book, Dave, I know that you have not read; it's entitled 101 Things I've Learned in Engineering School. It was an interesting book. As you know, I’m an engineer background, but there were a few quotes in here that I– Dave Johnson: Pat, I live on Purdue Avenue, so I have some engineering background. Pat Loehrer: Oh, that's true. Good for you. So you might like this one, Dave. One of the quotes I have is: "Inventing is a mixing of brains and materials. The more brains you use, the less materials you need." And another one - do you know the difference between accuracy and precision? They're really different things. And so, the best example that came from the book, which I thought was interesting, was pi, so pi is what? Dave Johnson: Round. Pat Loehrer: Okay, this is going to be painful. Pi is 3.14. Right? So that's accurate. But if you say pi is 3.1415926535, that's accurate and precise. And if you said pi is 3.98, that's just inaccurate and imprecise. As I think about engineering as we move forward, I'm thinking about the Lung Pragmatic trial that has just been announced, where we're trying to do trials a lot more simply in which I think we can be accurate, but perhaps not as precise as we always deem to be important. And I think we're really excited about that and that project. Dave Johnson: Well, that's really all the time we have for today. And we really want to thank you, Miriam, for a wonderful interview. And knowing that you're up very late at home makes it all the more special. We also want to thank our listeners to Oncology, Etc. This is an ASCO educational podcast where Pat and I will talk about just about anything. If you have an idea for a topic or a guest you'd like us to interview, please email us at [email protected]. Thanks again. Pat, I have an important question for you before we leave. What do you call a snail that's not moving? Pat Loehrer: You got me, man. Dave Johnson: Escarstay. Pat Loehrer: I love it. Miriam, Asante sana. Dr. Miriam Mutebi: Nime Shukuru. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.