Understanding Global Breast Cancer Disparities with Dr. Temidayo Fadelu
By BCRF | October 14, 2021
By BCRF | October 14, 2021
While academic and medical research has led to incredible breakthroughs in breast cancer care—including new treatments and screening methods—these advances have not reached every patient in every corner of the globe. With breast cancer now the most commonly diagnosed cancer in the world, it’s critical that lifesaving advances are deployed more equitably and universally—especially to women and men in lower-income and -resource countries.
How can the gap between high- and low-resource countries be bridged? How can you translate valuable medical knowledge to countries with different healthcare infrastructures?
Each year, BCRF underwrites several grants to breast cancer researchers in partnership with Conquer Cancer, the ASCO Foundation. Dr. Temidayo Fadelu recently received the Career Development Award for Diversity, Inclusion, and Breast Cancer Disparities. Dr. Fadelu was a prior recipient of a previous Conquer Cancer–BCRF Young Investigator Award.
Dr. Fadelu is a medical oncologist and instructor of medicine at the Dana-Farber Cancer Institute whose work focuses on global equity in breast cancer. His BCRF-supported project aims to improve adherence to endocrine therapies among patients in Rwanda and Haiti.
Chris Riback: Dr. Fadelu, thank you for joining. I appreciate your time.
Dr. Temidayo Fadelu: Thank you, thanks for having me.
Chris Riback: So this is not scientific, but I often feel that if you want to know what a person really cares about, you'll look at their Twitter bio. And on your Twitter bio, you list all the important elements, oncologist, hospital, and university affiliations, the fact that you're an impromptu cook, which I think will make for an excellent follow-up podcast conversation with you, but also the words in your bio, cancer equity. What does cancer equity mean to you?
Dr. Temidayo Fadelu: Thanks for that question. I did not expect people to refer to my Twitter bio. And so, I think to me, cancer equity is patients from anywhere in the world having access to the appropriate type of cancer care that that patient needs. So there is a lot in that, in the sense that the type of care a patient needs to sort of customize to their own specific needs. And when I say access, access is a relatively complicated word, because access can mean geographical access, economic access, and a variety of other elements of access as well. So to me, it's folks really having the care that they need in a way that is accessible to them.
Chris Riback: Yes, and obviously that's where you have dedicated so much of your energy and efforts over the years, and I look forward to asking you about some of the specific current efforts that you have to kind of close that gap. But the research of yours that focuses on the disconnect between evidence-based knowledge and integration into real world clinical practice, describe that disconnect for me, because I think that for us to understand that disconnect gets to the heart of so much of what you do.
Dr. Temidayo Fadelu: So, in the academic world, and in the research world, there are lots of studies that get done and studies are usually done in an idealized setting, so be it testing of a new medication or investigating the reasons for why something is a particular way, and a lot of knowledge gets generated. And the question is, what happens after that knowledge gets generated in the context of a research study?
So one element of the disconnect when it comes to lower resource settings, for example, settings like Rwanda, or in Haiti where I work, is that many of the studies that generate the knowledge are not done in those settings, the studies might be done in higher resource settings, and there's always the question of how translatable the findings are from the higher resource settings to the lower resource settings.
Another element of this, as well as even studies that are done in lower resource settings are usually done in a way that requires a lot of support to carry on the study. And after the study ends, many times there is a gap between translating what is found in that setting to actually impacting patients locally as well.
So an emerging field called implementation science, and the goal of implementation science is to try to bridge that gap, so not just finding out whether or not something is efficacious or generating knowledge, but figuring out the most appropriate way of implementing the findings from the knowledge that is generated to impacting people in a local way. So, as you can imagine, implementation science really needs to take into account the context in which you're working because the context is really important. So even if you find something somewhere, really recognizing the context in which you want to implement it is quite important.
Chris Riback: One size does not fit all.
Dr. Temidayo Fadelu: Correct, one size definitely does not fit all. And a lot of my work currently has been in utilizing some implementation science principles to improve the type of care patients are getting, specifically breast cancer patients in Rwanda and Haiti.
Chris Riback: Is the challenge in the first instance to simply understand the facts on the ground. It's hard to even get a lay of the land because there's not even enough primary or adequate primary research going on in those locations, am I understanding that part of the problem correctly?
Dr. Temidayo Fadelu: Yes, that is most certainly a huge part of the problem in many low income countries. Traditionally many of those countries had focused the healthcare systems on other types of diseases, specifically communicable diseases and infectious diseases. So there traditionally has not been a strong background of primary data and primary research in oncology in these settings. So some of the initial work that we've done in Rwanda has really been, let's just get the lay of the land of what's the current state and what's the current status of things and understanding that helps you also understand gaps, and then you can employ strategies that have been used in other places, but in a way that is contextually appropriate to fill those gaps.
Chris Riback: What struck me as well was some of your data around breast cancer does not discriminate, I assume, between high income, middle income and low income countries in the initial instance, correct? I can assume in kind of an even distribution regardless of the economic status of the country itself?
Dr. Temidayo Fadelu: It is a little bit more complicated than that, but you are absolutely right that breast cancer does not discriminate. And in the past there was the thought that low-income countries would not suffer from oncologic problems, but that's certainly not the case. So breast cancer occurs everywhere around the world, however, there are some social and other factors that increase the risk of having breast cancer in some places. But you're right that breast cancer occurs around the world.
Chris Riback: If I'm understanding correctly, the most heart-wrenching problem is that early recognition really matters. Once it's recognized early, continual regularized treatment really matters. And that's where the data show just the cliff drop that while maybe the initial instances are basically averaging out about equal-ish across the globe a real disparity in how many of those cases result in a patient's death, I guess, in a sense dependent on where they live. Is that accurate?
Dr. Temidayo Fadelu: Yes. And there's certainly huge disparities in this. So if you lived in the US or in Northern Europe, first, your breast cancer will be diagnosed at an earlier stage, and when you actually look stage for stage, you certainly will have a much higher survival rate. And so the patient having breast cancer in the US and Northern Europe has an over 80 to 90 percent chance of survival over five years, depending on what the stage is. However, if you're a breast cancer patient in a lower resource setting in Sub-Saharan Africa, you might only have a 50 to 60 percent chance of survival. And there's a lot that comes in there, and so part of it is the stage of diagnosis, part of it is really the inaccessibility of curative treatment. So even patients with curative disease are still doing poorly in Sub-Saharan Africa.
Chris Riback: So this segues, I believe to some of your current research, and that's your effort in improving adherence to adjuvant endocrine therapy among patients with breast cancer in Rwanda, the randomized intervention of symptom, self-monitoring, and motivational mobile text message reminders. So describe that effort for me, what is your strategy? When did you start? Where are you in the process? How will it work?
Dr. Temidayo Fadelu: Okay, thank you for that question. So this is a study that was recently funded by the Breast Cancer Research Foundation, as well as the ASCO Conquer Cancer Foundation, so we're just in the early stages. So the overarching concept here, as I mentioned, is trying to improve the care that patients get. In this particular case these are patients who have estrogen receptor-positive breast cancer, and in this particular population, adjuvant endocrine therapy, that's endocrine therapy that patients get after they've had surgery, and folks who need chemotherapy after they've done some chemotherapy. And this is oral medications that patients will take for at least five years, and adjuvant endocrine therapy is almost as important, or just as important as chemotherapy in this population.
These are medications that are old and have been available for a long time, and they're also medications that you take by mouth. So in a setting like Rwanda and in other low resource settings, these are therapies that are already available. So the main question is how do you improve patients adherence to these medications? So there really has not been much in the literature, really assessing how well patients are doing with adherence to these medications.
Chris Riback: So if I can just clarify and make sure I'm understanding your point there: We can get the medication there. It's not a question of whether the medication exists or if it can get kind of physically to the country, it's at that point, that there's the gap in the understanding and then I think your conclusion is challenges in terms of maintaining the treatment, is that right?
Dr. Temidayo Fadelu: Correct. So, the concept of adherence sort of goes to the multiple elements of adherence. One is starting the treatment, the other part is actually taking the treatment the way it's prescribed, so taking it on a daily basis in this case, and then the other challenge is taking it for the duration for which it's prescribed, so taking it for, in this case, at least five years. So there are challenges at each of these steps. So right now we actually don't know what the magnitude of the problem is. From some of our studies we've been able to understand the problem a little bit, but we actually did not know it completely. So, we know that only about 85 percent of eligible patients initiate the treatment, and we also know that about 40 percent of patients for whatever reason end up being lost to follow-up within the first two years.
So part of this study, the first part of the study is really trying to understand the different elements of adherence within this population. So the first part is a mixed-methods study which involves interviewing patients, but also there'll be a survey of patients sort of understanding what are the things that contributes to whether or not patients are adherent.
Chris Riback: And what's your hypothesis going in and based on the work that you've done over so many years, is it not enough facilities within the facilities? Is there more of a focus on the initial diagnosis and the surgical treatment, but maybe not as much focused on the continuing care? Do people live too far away? Is it something cultural? Is it A, B, C, D, are you going to choose E, all of the above? What's the answer here, doctor?
Dr. Temidayo Fadelu: It's probably a little bit of everything, and so that's the main reason we're doing this first part of the study, is many times people jump into the intervention without necessarily really understanding the problem. And in this case, it's really important to try to assess what the problem is. Even if we know that patients are not "adherent", what are the reasons why they're not at adherent?
Chris Riback: What's the root cause?
Dr. Temidayo Fadelu: Exactly, that would really impact what you do. So certainly based on some of the previous studies that we've done, there are some things that we certainly know are problems. So patients have to travel from far away to get the medication. There are certainly side effects from the medication, so how much are those side effects impacting in what patients do? How much does education of patients on those side effects actually impact what they do with regards to allowing them to know, and empowering them to know the importance of the medication and the purposes of the medication, and how does that impact what they do? And empowering patients to also manage those symptoms so that, or simply asking them about those symptoms so that they let the clinician know what's going on.
Dr. Temidayo Fadelu: And in the case of Rwanda, these medications are available to patients at no cost, so the cost of the medication itself should not be a problem. Nonetheless, there are a variety of other costs that come into play for patients, specifically travel costs. And that's one of the things we showed in a previous study that travel costs can be quite significant.
Chris Riback: So much of your research in your studies, it has seemed to me focused not just on the medical science, but also the costs around it. To what extent do you feel that you're a part-time oncologist, but a full-time economist?
Dr. Temidayo Fadelu: I most certainly would not call myself an economist.
Chris Riback: But the cost component, it's not just a science problem, it's not just a medical science problem that you're dealing with. I know you've also recently published research looking at breast cancer outcomes in Haiti, and you did this with, among others, Dr. Lawrence Shulman, an incredibly inspiring doctor who also was a previous guest on this podcast. Did your findings in that research, particularly recognizing that most Haitian patients are diagnosed at later stages, did that research inspire the Rwanda efforts? Or do I have the timeline wrong and you already were in Rwanda?
Dr. Temidayo Fadelu: So, I started working in Rwanda first, actually. So after I completed my internal medicine residency in 2013, I moved to Rwanda and I was working at the cancer program at Butaro Cancer Center of Excellence, and I lived and worked there for two years. And then moved back to the US, and I've been living in the US since then. And I started working in Haiti in 2016, so I've kept long-time collaborations with both countries, so I've continued working in Rwanda, but also worked in Haiti. And so the work in both countries have inspired one another. Even though the countries are quite different, there are some themes that cut across the different places.
Dr. Temidayo Fadelu: So, patients have limited resources in both places. The health care system is different in the sense that Rwanda has a national insurance scheme, which does have an influence in what type of access patients might have, and that is not the case in Haiti. And both the geographic nature and the location of facilities also sort of has an impact of patient's accessibility to those places as well.
Chris Riback: Going back then to your study in Rwanda, you know there's a problem, but you're trying to diagnose, you need to diagnose the root causes of the problem. But my understanding is that some of the tactics, and I imagine you're not going to implement tactics until you understand the root causes, but some of the tactics that you are thinking about include the motivational mobile text message reminders and other capabilities for self-monitoring. Do I have that right? And are these tactics, have you used these elsewhere? What's making you think that these are the types of tactics that might make sense?
Dr. Temidayo Fadelu: Yes. Yes, so the choice of those two as part of a potential slew of interventions was based on review of the literature, specifically review of the HIV and TB literature in Sub-Saharan Africa, because HIV medications and TB medications are also oral medication and there's actually been a variety of studies that have been done in the Sub-Saharan African context. So even though it's not necessarily [the same] as a cancer, there's certainly some literature from that, as well as looking at the broader literature on adherence to adjuvant endocrine therapy. So based on those, and also based on some studies and evaluation we did specifically in Rwanda.
So, we did a survey asking patients about their use of technology, specifically, what type of technology they had access to, how were they using mobile phones, if they had access to mobile phones, as well as what the patient's preferences are with either text messaging or calls or other types of functionalities with the phones. And we're also currently finishing up a prior study which is a pilot study where we're piloting text messaging in a few number of patients, and we will do some qualitative interviews with those patients at the end. So those are the things that influenced our decision for suggesting that these might be interventions that might potentially work.
I should also mention there have also been some studies that indicate that text messaging has not been as effective in Western population, specifically in the US. So our goal was not necessarily to replicate exactly what was done in the US, and given some indication that text messaging alone wasn't going to be effective, we wanted a multifaceted intervention. So the content of the text messaging, in this case, motivational messages, and also empowerment of the patients, in this case, we wanted them to record their symptoms, but also they'll get suggestions on how to manage your symptoms, and doing those remotely as a way of bridging the patients in between appointments so that they could take their medications.
Certainly, part of this project after the completion of the survey is really asking patients what intervention, not just, but also there's a process called implementation mapping where you get experts, local experts, so local clinicians, patient advocates, patients, content experts in breast cancer –
Chris Riback: A whole ecosystem, it sounds like.
Dr. Temidayo Fadelu: Exactly, get everyone on the table saying, here's a certain intervention we're thinking about implementing, let's sort of work together to figure out if those interventions actually make sense and selecting a package that makes sense, and then figuring out exactly how to implement them. So there are going to be multiple steps prior to getting to the randomization. So the project is a three-year project, and we're really at the beginning, so the randomization comes later on.
Chris Riback: So, as you are kind of launching into this journey on this research, what is the role for you of BCRF, and what would you ask of the rest of us? What should the rest of us think about, or even, God forbid, do that you would ask?
Dr. Temidayo Fadelu: Well, the second question is the harder question, so let's talk about the first one. So BCRF is supporting this work through the work that they do with the Conquer Cancer Foundation. And BCRF also supported a Young Investigator award that I got, which helped create some of the preliminary data, and that feeds into this work. And BCRF is also supporting some other work in cancer screening and early detection in Rwanda as well. So, I'll say, BCRF has really been quite instrumental in helping to really understand some of these contextual factors and hopefully in the implementing and testing of a variety of interventions as we go forward.
And specifically, for me, I think, these grants or fundamental grants are really early career development grants for me, and they've helped with helping me generate this data that can then be used for much more substantial, larger grants in the future from BCRF and from other foundations as well. And also, national funding from the National Cancer Institute.
What can other folks do? I'll say, everyone, can try to learn about what's going on out there. So I think first each person thinking for themselves, what do they want to learn about, and in what way do they think they can contribute? So some of the work that I'm doing currently, as you sort of indicated, does not necessarily require a medical degree.
Chris Riback: Good, then I'm qualified.
Dr. Temidayo Fadelu: Yes, you are in fact qualified because potential interventions might be patient education materials. So creating the content of the patient education materials would require some knowledge, but formatting the patient education materials, putting it in a way that is in fact accessible to patients, it's something that is beyond what I can do, so getting collaborators to do that. Many of the patient education materials are in paper, and we in fact know there is a low literacy level amongst our patients, so we try to have pictorial representations.
But one of the visions I have in the future is having questionnaires and patient materials in an audio version or a video version in a way that is in fact much more accessible to the patients, where they can have access to it remotely. We found out that the vast majority of our patients have phones, the vast majority have smartphones, so there are ways of doing things in a way that is more accessible to patients, which certainly requires a variety of expertise beyond what I have.
So, I do work with collaborators with patient advocacy groups, and specifically cancer survivors as well. And another project that we're currently working on is understanding breast cancer stigma, and how to work with family members in understanding the state of what patients undergo with their family members.
Chris Riback: Specifically in Rwanda or in multiple locations?
Dr. Temidayo Fadelu: Specifically in Rwanda. And as a part of that project, we are going to be trying to develop interventions as well. And some of the potential interventions is utilizing breast cancer survivors as partners with patients, but doing it in a way that is proactive, such that patients and their families have access to a variety of resources that can potentially help them.
Chris Riback: So that would seem to be incredibly powerful, not only the one-on-one capability of yes, to whatever extent there is stigma, but to be able to talk to someone who has gone through it and survived. But also potentially, if you are distributing audio or video materials to mobile phones as a way for future encouragement, boy, those survivors would make remarkable spokespeople, wouldn't they?
Dr. Temidayo Fadelu: Yes, absolutely. So those are potential ways in the future that I think people can help.
Chris Riback: There are so many challenges that many of us don't even know in the first instance that they exist. To close out the conversation, let's talk about maybe the one thing that, I'm just guessing, judging by your personality, you would hate to have to talk about. Let's talk about you. How did you get into this? And I mean, going way back I know that you did not grow up here in the US, but for you, was it always science?
Chris Riback: I did read that your medical school thesis evaluated brain drain and migration patterns of physicians from Sub-Saharan Africa to higher-income countries. I can only assume that that was your autobiography that you wrote, and I'm glad to know of course, that you all are going back and spending time back in Africa as well. But tell me, how was it for you growing up, and was it always science, was it always research?
Dr. Temidayo Fadelu: Yes, well, so I'm originally Nigerian, I grew up in Nigeria. And I moved to the US for college, so I was in Nigeria up until high school. And it is sort of a complicated question. So let's put it this way, so I was always interested in science and math. So going back to elementary school, I was always sort of interested in math, I don't know why I didn't become a mathematician with my interest in science and math. Actually, I do remember why I did not become a mathematician, calculus in college was hard so that changed the course.
Chris Riback: Yes, that derailed many of us, for sure.
Dr. Temidayo Fadelu: Yes, but in Nigeria, in high school, you also decide on a general path. And so you have to sort of decide if you're on a science path or an arts path or a business path, and so I'd sort of gotten into the science path based on my interest in elementary school. And at the end of high school, you take exams that are specific to the path you were on. So in a way, my career in science was sort of defined from high school. And I had also started university in Nigeria before I moved to the US, and in Nigeria, medical school is an undergraduate degree, and so I was in medical school at the University of Lagos.
So, when I came to the US a year after high school graduation, I sort of was anchored on the idea of medicine because I was already in medical school, so I did struggle a little bit decided on what majors to do in college. Another thing I enjoyed at the time was environmental studies, because I had asthma growing up as a kid, and I was sort of interested in the idea of pollution and how pollution impacts breathing and waste management, and things of that nature.
So, a long story, in college I was a biology and environmental studies major, as I was pre-med, and decided on the medical school route. I think part of it was based on my experiences growing up, so my experiences with asthma and illness. And part of it was also based on my family's experience because my dad passed away at the end of high school and he had hepatitis as well as hepatocellular carcinoma. And at the time I did not recognize that he had cancer, and it's something I later discovered after having a little bit more knowledge, and so I think that certainly had an impact on my wanting to do something within medicine.
I should also mention that my mom also had breast cancer when I was living in Rwanda, thankfully she is doing okay. And so the experience of cancer is a personal one to me and my family. And the narrative of cancer not being a problem in many low-resource settings, to me seemed clearly wrong. So that motivated what I did in medical school as well as going on to internal medicine and oncology.
Chris Riback: Well, certainly that would be clearly very, very powerful motivation. And I guess our hope then is, once you solve this cancer thing, then you can return to environmental science and solve the climate change thing. You could deal with both of them for us, couldn't you?
Dr. Temidayo Fadelu: Unfortunately, the environmental ship has sailed.
Chris Riback: Oh, okay, okay. Then we'll only hold you to solving cancer.
Dr. Temidayo Fadelu: Yes, yes. Well, we jointly as a world we can make a dent in cancer.
Chris Riback: Certainly. Well through efforts like yours and the other folks who I'm fortunate enough to get to speak with, every effort is obviously being made. Dr. Fadelu thank you. Thank you for your time, thank you for the work that you do every day.
Dr. Temidayo Fadelu: Thank you. Thanks for having me, and thanks for this opportunity to share with all of your listeners.
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