Apr 30, 2020

Dr. Jose Bufill, a medical oncologist at Michiana Hematology Oncology in Indiana, and his patient, Alice Cyusa, discuss the doctor-patient bond that inspired them to support patients with cancer and oncologists in Rwanda. They share their unique journey to visit Rwandan hospitals and medical students in their pursuit of a great humanitarian cause.

TRANSCRIPT

ASCO Daily News: Welcome to the ASCO Daily News Podcast. I'm Geraldine Carroll. Today, we are sharing an inspiring story of hope and possibility. Joining me are Dr. Jose Bufill, a medical oncologist at Michiana Hematology Oncology in Indiana and his patient, Alice Cyusa.

Alice was diagnosed with leukemia in 2017, 30 years after being exposed to the fallout from the Chernobyl nuclear accident while she was studying at the University of Odessa in Ukraine. She believes her cancer diagnosis many years later was linked to the disaster. She completed her treatment under Dr. Bufill's care. And their doctor-patient bond inspired them to pursue a great humanitarian cause-- they created a foundation in Rwanda to support patients with cancer. And they remain friends to this day.

My guests today report no conflicts of interest relevant to this podcast. Dr. Bufill and Alice, welcome to the ASCO Daily News Podcast.

Dr. James Bufill: Thank you, Geraldine. Nice to be here.

Alice Cyusa: Hi, Geraldine. Thank you so much for having us.

ASCO Daily News: Dr. Bufill, tell us about when you first met Alice.

Dr. Jose Bufill: I first met Alice in March of 2017 when she was hospitalized with bruising and pancytopenia. And she had been experiencing those symptoms for a couple of weeks. And we diagnosed an acute promyelocytic leukemia. So we quickly started treatments. And fortunately, she responded well. Despite a few bumps in the road, she entered a complete remission. And here we are several years later.

ASCO Daily News: Alice, it's wonderful that you are healthy and thriving today and so involved in supporting Rwandans at home. You have said that growing up in Africa, a cancer diagnosis was like a death sentence. Do you still feel this way?

Alice Cyusa: Thank you, Geraldine. No, I do not feel this way, because I'm here to testify to that. I'm a cancer survivor. But-- but it's because I'm here in the United States where I can get treatment, where there are resources to take care of me. There are oncologists. There are doctors. But back home in Rwanda in Africa, I can't say the same thing. I would think that someone in my situation, even during total and complete remission, if that person was living in Africa and Rwanda they will always face care thinking that, you know, my cancer is going to come back AND when it comes back, I'm going to die this time around.

ASCO Daily News: Well, Dr. Bufill, why did you decide to join forces with your patient, Alice, and do this humanitarian work? What are the needs of cancer patients in Rwanda?

Well, you know, I'd never given a lot of thought to international oncology work before I met Alice. I had read about global oncology initiatives through ASCO publications and understood in a very general way that there were a lot of needs out there. But I think the moment of awakening for me occurred when Alice and I visited Rwanda in January of 2019. Consider a country with 12 million people and basically a handful of trained oncology professionals there to take care of them.

All of these people that we met were young, talented physicians. But they had very limited resources to treat their patients. So in a sense, you know, I saw that there a very strong desire to improve the situation among the health care professionals and civil authorities in Rwanda, and at the same time very few resources to do so. So it seemed to be an environment that invited initiatives like Komera. And the second factor is really Alice herself because as I met her I think it became clear to me that she had leadership skills that would be important, kind of critically important for the success of an initiative like this. I consider myself to be a victim of Hurricane Alice as I tell her frequently.

ASCO Daily News: Well, Alice, it must have been amazing for your community, for your friends in Rwanda to see that you have survived cancer.

Alice Cyusa: Yes, Geraldine; indeed it was. When we were visiting hospitals in Rwanda, I remember one time I was sharing my story because we did visit the one medical school in Rwanda. It is in the southern part of Rwanda. So we were speaking in front of probably 100 students - medical students. So I started introducing Dr. Bufill.

And then I talked about myself. I've been here in the United States for more than 20 years now. So I shared my survival story, how I survived cancer. What happened in my case; how I did treatment and everything. So I could see in the students' eyes that many of them were skeptical saying, you know, did she really even have cancer? How can someone survive cancer? So they would come up to me and say, you know, tell us the truth. Did you really survive cancer?

Alice Cyusa: So the open-mindedness of sharing your survivor story, which we are encouraged to do here in the United States because it helps other patients, it helps other people. In Africa, that's not how it is. So you were diagnosed with cancer. That automatically means a death sentence. So you're going to hide. Especially, for example, a woman that is diagnosed with breast cancer, it's a curse. I can't even start talking about men being diagnosed with prostate cancer. So me being out there, being Rwandan, and speaking in my own language and sharing my experience, my survivor story, and tell them, yes, it's possible, you can have cancer and you can beat it. You can survive it. You can go into complete remission.

ASCO Daily News: Right. So, Alice, you're feeling well today. Tell us about Komera. And what are your hopes for the Komera Rwanda Cancer Care Foundation?

Alice Cyusa: So to talk about Komera, I probably should start by explaining what the word Komera means because it's my mother language, in Kinyarwanda, Rwanda's official language. The word Komera in Kinyarwanda means be strong. You know, you're doing great. Keep on going. Keep on moving.

And the way we came up with the name for the foundation is that while we were visiting with Dr. Bufill in Rwanda, about a year and a couple months ago, on our way back from the southern side of the country, which is a very remote area, we got lost. Our driver was lost, and we didn't know where to go. There was a little kid who was trying to find roots to go home and cook. And the little kid, he had the bundle of stick on his head.

Alice Cyusa: And then our driver stopped him and asking him for directions. So the little kid, the little boy, you know, said, you know, go straight and then turn left. You are going to be in the city. So the driver said, thank you. And then the little boy; he's probably maybe about 7 years old and he starts screaming and saying out loud, komera, komera, muzungu, which means stay strong, stay strong, hang there white man.

Alice Cyusa: So we start laughing because it was very funny. And Dr. Bufill was like, "what did he say?" So I said, you know what, Dr. Bufill? I think this is it. This is what we have to do. We have to tell Rwanda to be strong, to hang in there, they can do it.

Alice Cyusa: So Komera Cancer Care Foundation is, of course, a non-profit organization. And we are hoping and praying that we can contribute somehow to cancer care programs in Rwanda to support them. Here, in Indiana in my local Rwandan community, we have many nurses, Rwandan-American nurses. And then as people who live in the diaspora, patriotic people, we always try to find ways to give back home, to help in any ways we can.

Alice Cyusa: So with the Komera Foundation, we actually teamed up with those nurses. And we were hoping that if there was no COVID-19, probably by the end of the summer we're going to travel to Rwanda with the nurses. And then we're going to go and maybe to one or two oncologists doctors-- we're going to train Rwanda nurses back home, teach them how to administer chemo in a safe way, because when we visited it, we didn't see that.

Alice Cyusa: And also, we were hoping to take medical equipment. We're probably going to take a chemo hood, mixing hood, because they didn't have-- the hospitals we visited, they didn't have that. We are going to take medical supplies. But the whole thing is about Rwandans living here in the United States, going back home, and helping out. That's what we are hoping to achieve with Komera.

Alice Cyusa: Maybe a couple years down the road, five years from now, Rwanda will have more than nine oncologists for 12 million people, because that's what they have right now. They will have chemo mixing hoods. There are three big hospitals that can treat cancer. But they're not fully equipped. They're not well-equipped. So the mission of Komera is to support cancer care programs in Rwanda.

ASCO Daily News: So, Dr. Bufill, you must have been shocked by the lack of resources in Rwanda. Do you feel that you have a role to play as an oncologist in strengthening the oncology community to help build the oncology community over time in Rwanda?

Dr. Jose Bufill: Well, I certainly hope to be. I think what we experienced there was, you know, on the one hand a lack of material resources, but perhaps it's more important to point out that there is a great eagerness among the health care professionals and the civil authorities there to really improve the situation. So that type of local environment I think is an important sort of ingredient in determining the success of this initiative - that we're seeking and finding partners, local partners, to collaborate with in helping the situation over there.

Dr. Jose Bufill: There is a great, great demand for oncology services. As happens in most developing countries around the world, patients are diagnosed in more advanced stages. They are sicker when they first present to their doctors. And at the same time, there are many cancers that even in advanced stages can be cured with chemotherapy treatments that are, at least by Western standards, relatively inexpensive, because the combination regimens consist of drugs that are generic. We think that there are opportunities to have an impact by trying to help the local people obtain the drugs that they need and administer them safely.

Dr. Jose Bufill: The other consideration is sort of a cultural consideration, because so far, due to the lack of resources, when a Rwandan patient is diagnosed or when any patient in these developing countries are diagnosed with cancer, the general attitude is relatively pessimistic because the resources are scarce. And what resources there are a lot of times are beyond the financial capabilities of the patients. So there is sort of a cultural obstacle to overcome. And I think one of the tasks that we can contribute or one of the things that we can contribute through Komera is basically telling success stories of patients like Alice who had cancers and were treated successfully.

Dr. Jose Bufill: So as I mentioned, there's a great eagerness among Rwandan physicians to expand oncology services there. And as an example, I recall one of the physicians we met, Dr. Fabien Ntaganda, a hematologist who trained in South Africa. And he is very eager to try to develop a peripheral blood stem cell transplant program in Rwanda. And he inquired about what we could offer, if we could offer anything. And when we returned from Rwanda, we started asking around among my colleagues in the transplant community, and we were successful in arranging a stay with the transplant program at Indiana University, where he will hopefully come -- I mean, he would have been here had it not been for the COVID situation. But we hope that he'll be able to come as planned within this calendar year.

ASCO Daily News: Well, Dr. Bufill and Alice, I want to thank you for sharing your remarkable story with us today. If anyone is interested in learning more about their work in Rwanda, you can find them online at komerarwandafoundation.org. And Komera is spelled K-O-M-E-R-A. Thank you both so much, and I wish you all the best.

Dr. Jose Bufill: Thanks, Geraldine.

ASCO Daily News: And to our listeners, thank you for joining us for this episode of the ASCO Daily News Podcast. If you'd like the content you're hearing, please rate and review us on Apple podcasts.

Disclaimer: 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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

COI Disclosures: 

Dr. Jose Bufill - No Relationships to Disclose

Alice Cyusa - No Relationships to Disclose