Conversation with Kijabe Oncologist Sarah Muma about her personal experience and the future of cancer care in Kijabe and the country.
Sarah: I'm Sarah Muma. I'm a pediatric oncologist serving at AIC Kijabe Hospital. I've been at Kijabe for about 12 years now, focusing more on oncology or generally on cancer care for 6 to 7 years now.
My cancer story is, I had a very early experience with cancer when my mother had gastric cancer during my early teenage years. What I remember about that time is her strength and her faith in God. Certainly, I didn't know much about cancer or really what it meant and what the treatment was all about. I do recall her going for chemotherapy sessions for radiotherapy. I remember some surgery being done, and it was certainly a period of a lot of anxiety in during that time as a teenager. Probably I didn't really grasp everything around it. But much later, as you know, over the years as I thought through everything and tried to process what struck me the most is just her faith in God and how that strengthened her for that very difficult journey. I do recall things like the side effects and changes like weight loss. I do recall all that, but mostly I remember how strong her faith in God was. Her praying for us all the time and, you know, her unwavering faith in God and her trust in him that he would carry her through this journey.
It also struck me how she still fully believed in God as a healing God. And despite her not recovering from that in terms of, you know, she passed on, but, she had faith that God is still a healing God. And he is. He is a healing God. He is our healer. He is our protector. And she also had a really deep trust that God would take care of her children and her family even after she was gone, because at some point, she suddenly began to talk to us as someone who is leaving. But her faith was so strong that we would be fine, and that God was in control, and he truly was in control.
Over the years, as we continued with school, it was very difficult. My siblings and I were four four teenagers at the time, so a very difficult time all processing, “who are you yourself?” And yet at the same time, without your mom, who, for me, that felt like a huge part of my life had just disintegrated. But it is true that God is faithful and he came through for us. Everyone has achieved their goals in life.
I always wanted to be a doctor from a very young age. I talked about it. I used to treat my dolls and my mom really encouraged me.
During her time of illness, I thought that that passion would die. I thought that that's all there is to sickness, that there's some suffering that I didn't want to interact with again.
But again, I must say that that is God's doing, that he transformed that so that I didn't I don't look at it as you know, taking care of children and even adults with cancer. It’s tough on a person. It's very difficult. But I realize that walking with God in that journey, he does ease the burden. He does make it lighter.
It's quite encouraging to know that we can provide treatments, therapies. We can provide palliative care. We support patients through this journey. We work together so that the pain is less, the anguish is reduced, and there's comfort and especially there's comfort, in Jesus Christ.
I'm thankful for my mom's salvation because being a believer, her faith in God and her trust in him. I'm just grateful for that salvation that she taught us what it means to believe and how to trust in God and have a relationship with Jesus Christ.
There’s a lot of comfort to knowing that that was not the end, that we will meet again that one day, this comes to an end and we will meet in heaven. So there are times I certainly do miss her a lot, despite it's now 27 years later.
I still have moments of grief still. It's just very different dynamics.
In my teenage years, it was terrible missing and, you know, anguish and feeling like my world is over.
In my 20s and 30s, it was more ofwondering what kind of relationship we would have had. Andlooking at other, other, you know, friends who have their moms and wishing for such relationships.
In my 40s, it's been more of feeling what she may have dreamt of achieving and didn't get to achieve. So, I felt a bit of grief for her that, you know, these are goals and dreams that she certainly had, just the same as me, sometimes wondering what kind of a grandmother she'd have been. But at the end of the day, I realize all those things. God has taken care of them.
I've had mothers. I've had aunties who've come through for me, and my children have amazing grandmothers. So, I thank God for that experience and for me, I praise God that he enabled her to go through it with that strength.
So even as Kijabe Hospital embarks on expanding the cancer center for me, this is in honor of my mother and this is just glory to God for how that experience, traumatic and difficult as it was, that he brought so much good out of it.
David: That's awesome.
How did you how did you get into doing oncology? Like why did you decide? Because you were a pediatrician here in Kijabe for with like 5 or 6 years. And then why the jump to oncology?
Sarah: I always say that oncology chose me. I didn't choose it. During my training, it was a very strange coincidence that I ended up working in the oncology section. We had what we called daycare rooms, where children with cancer were getting their treatment. And really, everyone did on average about three months during in a three-year period.
David: Was this at Agha Khan during residency?
Sarah: My residency was at University of Nairobi Kenyatta Hospital. So, it was a very busy time when you had to work in the oncology section. But for me, strangely, I ended up doing more than six months of that. You know, it just would be interesting coincidences that I was the only person who could now work in that unit. So that's where I began to feel passionate about it. I was like, okay, this is something I can do. I actually do enjoy talking with the children, encouraging the moms. And then, you know, when I came to Kijabe right after that residency it just remained at the back of my mind. But then we had we began having (cancer) children we were taking care of together with their surgeons, and we were not happy with their outcomes when we'd refer them and hear that maybe they had delays in treatments, they had challenges accessing chemotherapy. And then an opportunity just presented itself where my husband was going for a pediatric surgery fellowship, part of his fellowship in South Africa.
Sarah: And we're like, oh, we'll just travel as a family. So, by accompanying him, coincidentally. . .and I think not coincidence, God's doing that the only available spot for me to work and train in that hospital was in the cancer unit and only one space for exactly one year at the exact same time when he was there. So, at that point, I just accepted this and was like, "I think I think God is saying something." So that's how my training began. And so, I had my one year of training in South Africa and continued to pursue further training in Germany through a two year course. And that found me here, I was back in Kenya. And I'm glad that [Kijabe] hospital also took that faith journey with me, opening a unit with just one child and starting everything afresh. And the unit has grown to be giving chemotherapy to about 20 patients per day and thousands of patients a year.
David: What is the landscape for cancer care in Kenya? I mean, you answered one of the questions like, is it possible for somebody to become an oncologist in Kenya or does everybody have to go overseas?
Sarah: In terms of training, I would say that has really the opportunities for training have increased tremendously over the years. At the moment, there is local training available for generally almost all aspects of oncology training. So, for our adult colleagues, there's a medical oncology training at Kenyatta National Hospital through the University of Nairobi and also at Aga Khan University Hospital. And then for pediatrics there is training at Moi Teaching and Referral Hospital in Eldoret. So that's for pediatric hematology oncology. There's also radiation oncology training, which is also at the University of Nairobi in Kenya.
So, the opportunities are there. I think the challenge for training generally in Kenya is funding. Many times there are those who are willing, but if programs are not funded, it's very difficult because at that point, by the time people are choosing to pursue oncology, most of the doctors have families, they have people depending on them. And so, getting that time and financial support is the main hindrance. But there are programs coming up to support, being looked for. But for sure, the number of oncologists that we need is way more than what we are currently training. So, the hope is that that will continue to increase.
David: What is the need in in Kenya versus what is currently able to be provided? Do you have any idea?
Sarah: Yeah, I can speak slightly into it. Certainly, I can talk more about pediatric oncology. We only have about ten or so pediatric oncologists in the whole of Kenya. Our population is more of children than adults. We are a country that has almost 50% of its population under 15 years. So having only ten oncologists to all the children with cancer in the country is a very small number. So, we need to be at least 40 or 50 to actually make a dent. Patients, therefore, have to travel long distances to get to a treatment center. For the adult colleagues, the ratios are still far from taking care of because while we see about 3000 children with cancer in a year treated, for the adults, it's about ten times that number. So even the number of our radiation oncologists and medical oncologists is very small in comparison. So, we are we are barely, barely hitting the target. And patients do have to struggle to get to see an oncologist, long waiting times or long travel times. And that, of course, comes with the challenges of cost to patients, especially in the traveling and meeting their dates for treatment and getting to be seen by a doctor.
David: How is cancer care paid for in Kenya?
Sarah: So, cancer care in Kenya... In the past didn't have support from the National Health Insurance Fund that all Kenyans are required to contribute to. And previously some many years back, it was not, paying for cancer therapy. But we thank God that that changed. And currently this NHIF does pay for cancer treatments. Of course, with such a limited resource, the payments is just for a number of cycles in a year, it's limited.
So, you may find a patient may require, for example, 12 cycles of treatment in a year, but the NHIF will cap it at six. It's difficult. You can see it from the angle of NHIF that you want to reach more people and offer this care to more. But then at the same time it's also difficult from the oncology side that if a patient gets partial treatment, what do you do with the rest of the year? You have patients who cannot afford the out of pocket.
Also, some things are not paid for by NHIF. There are certain investigations that don't get paid for and the testing for cancer is very expensive. There's a lot of C.T. scans or MRIs and, you know, NHIF can only pay for a few of those so it can pay for one. Let's say it pays for one MRI per patient per year, and you may request even three. Uh, so it means the patient must pay for the rest.
So there's there's a lot of challenges in terms of patients actually getting their full treatment catered for, despite them contributing to the NHIF. There's a gap that some that many patients can only get about half to three quarters of really what they require for the whole year. And you know, if you're looking at also the time it takes us to make a diagnosis, well, you want that time to be short. You realize that there are certain specialized lab tests. Sometimes there are scans that the patient requires. Those are not being catered for by NHIF, so, you have a very long time when people are looking for resources to pay andget their tests done. We end up having late presentation. And of course, with late presentation, we now tend to have poorer outcomes.
So many Kenyans, there's this NHIF which should support, and does support but is inadequate. And then in the African culture we have social insurance where families will maybe form a WhatsApp group and try to raise some money. But of course, you can understand with such, if it was a one-off event, maybe people would support more. But when you think of the chronicity of the treatments and the duration, at some point family members don't even want to hear from them because they have given almost all that they have. And you still need more.
David: And this probably gets a little bit into something I've been learning about - is stigma around cancer. Right? What do Kenyans think about cancer? What is what is it like for somebody who gets diagnosed with cancer? How are they perceived within their community?
Sarah: There's a there's quite some stigma that surrounds a cancer diagnosis. Not only in Kenya, but I would say generally on the African continent. And I want to guess it might be the same in other low middle income countries. But I would say, especially even culturally in the African context, once a person is diagnosed with cancer, there's just the belief that this is absolutely a death sentence.
I don't want to refuse that it’s a devastating diagnosis, it is it is devastating. And as oncologists, sometimes we say that getting a cancer diagnosis immediately feels for patients as they describe - it feels like facing death, you know, looking at death in the face. So that's the first reaction. And maybe this begins also from the fact that it's only now that we are beginning to see better outcomes.
But for the longest time, when for example, radiation therapy was hardly available. It was just at the National Hospital. As it slowly rolls out to other counties, it means that for many Kenyans, that access wasn't even there, radiation therapy was just a possibility or a story. And so, yes, we certainly had poor outcomes. So, it begins from there, that anyone who had cancer ultimately either didn't get all their treatments or would die from it.
So there's this belief that this is just absolutely a death sentence. And we have the whole range from patients who are like, "you know, it's fine. I'm dying and I'm not going to pursue any treatments." We have those who really want to get their treatments and are so committed, but financially they are struggling and they will not get everything. And we have those who are going through the treatment, but secretly, they even keep it away from their family members because they feel that if I would tell my family members, then immediately everyone has already said "this one is dying," they have started discussing property and how to divide things. So, the stigma around it comes from that history in the past and just generally some beliefs culturally.
There is also a lot of belief that it [cancer] is a curse. So, in those who believe it is a curse, therefore that's another reason they'll not disclose or they may stay in denial for a very long time, refusing the diagnosis and trying to look for what is this curse? What is the reason behind it? While we are a country, with a very high percentage of Christians and believers, there's also the aspect that people feel that you can pray this away, that we will pray and the disease will disappear. And it's difficult, especially even working in a faith-based institution where we certainly believe in the power of our Lord as healer.
But, also, we do accept that, even in our faith that God will allow certain aspects of suffering in our lives and not everyone may get that healing that they so desire. God's will is still fulfilled. But many people feel that if they, they end up dying from that cancer, or if they actually have cancer, God is not with them. There is something they have done and they are now receiving a curse. So these myths are there and we struggle with them. We talk with patients about them and try to change the narrative. For example, in Kijabe, we do have spiritual support. We have pastors who work with our patients. And we incorporate prayer and faith in this journey but still really encourage our patients. Let's continue with the chemotherapy, with radiotherapy, with surgery as required, and trust God for the journey and the process and the outcome.
David: Wow. One of my best friends is an oncologist. He talks about that cancer in the US is a chronic disease. It's no longer a death sentence. It's a chronic illness, which brings a whole new set of complications, you know, but you're managing it over 5, 10, 20, you know, 30 years and for best outcomes. You go through treatment and it's just a check-up every so often and hopefully you're good to go. So that's the dream, that we get more to that point.
But then also what you're talking about with this perception in faith. It's why Arianna really latched on to this cancer center project is the opportunity that Kijabe has, as a faith-based hospital to speak into the perception of cancer in Kenya.
It really gets me excited that Kijabe has the this opportunity as an organization to lead in how cancer care is perceived in Kenya to lead, and sharing some good theology around it, and sharing what hope looks like in Jesus in the real world. . . may be a good way to phrase it.
David: Kijabe specific, You shared a little bit of the journey, how we progressed. What do we want to do to get from here? Maybe you could share where we are currently and then where we want to be in three years or five years or ten years or twenty years?
We actually began offering, we've provided oncology services for very many years. We began especially with the surgical oncology. So, we've had excellent breast oncology services. We have all surgical oncology services are offered here [at Kijabe]. We have our orthopedic surgeons, general surgeons, and for the longest time, patients would have surgery but not have other aspects of cancer care. We delved into chemotherapy services from about 2015 onwards. And that grew slowly, began initially as a pediatric chemotherapy unit. And then we grew to begin offering the same service to adult patients. So, we now offer really great surgical oncology services and chemotherapy services. And we do have also we link our patients to radiation oncology. However, we would like to see that we can give this comprehensive service within Kijabe Hospital. We anticipate that in the next five years we should have radiotherapy as well, so that we don't have to have patients having their therapy in different areas. We have our palliative services, we have our palliative team, we have a chaplaincy team. We offer, as well, psychology services for all our patients. So it is we are working hard towards giving comprehensive cancer care to all of our patients.
That's because for us, it's not only a medical journey - there is the spiritual component. It's a spiritual journey that patients are walking and we are walking as well. We've had patients come to Christ from listening to other patients, from interacting with our chaplains, with our palliative team, with the oncology team. So, it's more than just giving medical care. It is giving hope. It is preparing for our life after death because all of us eventually will die. Maybe from cancer, maybe not. Maybe something else. But the bigger picture, our salvation, that is what the focus is on.
We currently, for chemotherapy, manage about 3000 patients a year. We hope to triple that with this expansion. So, yes, that's daunting to think that, you know, maybe by next year we just jump from 3000 to 9000, but the team feels ready for it. We are trying to equip ourselves with the right equipment, the right human resource numbers wise and just quality wise, so we're trying to equip ourselves in that way, but we are for sure looking forward to that kind of an expansion.
David: Awesome.
I'm bracing myself for it because currently with Friends of Kijabe, we're trying to we're trying to provide somewhere around 300,000 schillings. So maybe $2500 or $3000 USD a month for chemo care. I can assume that that need will triple. Maybe more than that, maybe less. We will see what happens.
For me, it was really helpful realizing how integral comprehensive cancer care is to what we do in Kijabe. It touches just about every department in the whole hospital you mentioned. You mentioned, I think most of them - surgery, pathology, the lab, diagnostics, nutrition, even outpatient, inpatient. Every clinician in the hospital touches cancer in some way or other, so it's a really big deal.
Sarah: Yeah.
David: That speaks to the opportunity we have in Kijabe. We do have amazing multidisciplinary care, so there's huge opportunities. This year end, we're doing the cancer center. Our next big project will be a multidisciplinary center. It's outpatient plus lab, plus diagnostics, plus all the specialized things that we really want to do.
This cancer center will address your outpatient needs. How do we how do we have more clinic space? How do we have more chemo space? How do we improve flow? How do we improve your staff conditions to make it safe for the staff and safe for the patients. Patients need to be separate, ideally, from the general population of sick people coming into the hospital. That's one of the things this does. Step one is to address this current need for providing good outpatient care.
But then the next step will be really increasing diagnostics and inpatient. How do we get to we have pediatric inpatient but we also want to provide adult inpatient. I'm lobbying for that. I lobbied yesterday.
Sarah: Thank you.
David: I’ll continue because it's all of these things put together that really allow us to do great work, allows you to do great work.
David: Anything else we should talk about?
Sarah: I think we can certainly mention about the way you've already mentioned the multidisciplinary, how we actually do a very intentional about that?
David: You don't have to say a patient name, but maybe you could think of a patient and describe what that process looks like for a specific patient or diagnosis that you have in mind.
Sarah: Allow me to still speak about children.
David: We love children.
Sarah: I can give an example of a child who was brought from, Narok, really Masai Mara, very interior, brought by some well-wishers. This child was an orphan, but these were uncles and well-wishers who brought the child to hospital. Turns out the child had a Wilms tumor, a tumor in the kidney. And immediately the child arrives here for us, we will see the child any day. We try not to, especially for children, limit them to clinic days. But we certainly have clinic, and waiting time for our clinic, even for the adult clinic, is literally that same week. If you come this week, you will be seen this week if you come next week, next week.
So, we don't have that delay, but the patient will certainly be seen by our oncology team. We immediately, as well as with our palliative team who help us to disclose the diagnosis once we've done some investigations, usually for our lab as well, we will coordinate so that they book a convenient time for the child. So, if they need some sedation, we organize for that, and then the child will get their imaging done.
In terms of blood tests, if we do, for example, a biopsy, if we require that the surgical team, we have the oncology clinic and the surgical clinic on the same day, so that it allows immediate cross-consultation. There are patients we even see together. We will walk to the surgical clinic and discuss, or the surgeons will walk towards us and discuss. This is the same even for the adult patients. When our adult oncology clinic is running, you'll have surgeons walking up and coming to discuss a patient with the oncologist, or they'll call each other and just discuss immediately. So that's an element of the multidisciplinary care that it is seamless. There are no delays. There's no sending a patient across to another clinic. It's literally immediate. "Let's talk about this and let's have a personal plan for this patient."
So back to my patient. For this one, the imaging was adequate, the radiology is adequate to make a diagnosis. Once that is made and for the lab as well, the blood test we require will be done, and we start chemotherapy. The surgeons are also aware we are beginning chemotherapy. And the patient continued with that journey until after the few weeks of chemotherapy.
They needed surgery at that point. We have our multidisciplinary team meeting. We have a meeting with the surgeons where we repeat the imaging and discuss the plan for this patient. It doesn't matter how simple or complex that plan is, but we try to discuss all our patients so that we are walking the journey together. So, surgeons will now recommend their plan. And the child went for surgery, which was successful, with the tumor removed. Our pathology departments also takes up from that point. They needed to give us our report. And the turnaround time is less than two weeks. Within two weeks we know features of the tumor, whether we have high risk or just standard risk, we know the risk features of this tumor and we can plan for the next steps of treatment. Our pathology department also gets us immunohistochemistry, which is specialized tests that are required on most tumors, some of it outsourced. But we know they are working towards also ensuring that that is a service that is offered within Kijabe Hospital. And our pathologists and radiologists also join our multidisciplinary team meeting, so they are also aware they are expecting the sample at a certain time and give us feedback soon after.
Then from there, the child continued with chemotherapy, finished and is actually on follow up. Maybe this goes into a bit of our, our myths and all because the child, they preferred not to come for formal follow up. There's this belief that if you keep coming for follow up, you're trying to look for the disease again. But they call, they faithfully call on the time of their visits and just tell us, "You know, it's a bit difficult to get there, but the child is doing very well. She's in school." She's, I think now in grade four, doing quite well.
So that's how we try to work as a multidisciplinary team. Our adult colleagues as well also have their multidisciplinary team meetings faithfully every Monday morning discussing cases between the surgeons, the pathologists, radiologists, the oncologists. They may discuss a few challenging cases, but at the end of the day, it's to get this personalized plan for a patient that, you know, tweak it to suit this patient and remove any delays. So that is, I think, the greatest part about how we work as a multidisciplinary team.
David: Awesome, Thank you so much, Sarah.