Rebecca Ojedele Interviews Emmanuel Agumah, Founder of the Buruli Ulcer Victims Aid Foundation
When he was in high school, YALI network member and 2017 Mandela Washington Fellow, Emmanuel Agumah was diagnosed with Buruli ulcer. Categorized as a neglected tropical disease, or “NTD,” it kept him hospitalized for approximately three years and bedridden for about a year and a half. The disease, which he could have chosen to view as a disability, has instead given him a cause for which he fights. Agumah founded the Buruli Ulcer Victims Aid (BUVA) Foundation, which focuses on socio-economic support for former Buruli ulcer patients and those with disabilities. When speaking about his own experience with the disease, Agumah says, “After I came back from the hospital and I had lost hope … people gave me hope, so what can I give back to society?” Agumah credits the people within the hospital and in his own community for pushing him to continue to pursue his education.
Now, the Buruli Ulcer Victims Aid Foundation works to give back to victims who have suffered from Buruli ulcer. Agumah works to empower people living with the disease so that the stigma associated with disease in many African communities does not hold back their ability to succeed. In West Africa, Buruli ulcer mostly affects children aged 15 and younger. Because of this, Agumah’s foundation works to provide scholarships for future academic endeavors for these students. For people affected by the disease who might not fall under this age range, Agumah’s foundation offers a variety of options to gain access to vocational training or capital in order to start businesses to ensure that people don’t allow the disease to become a disability.
Agumah shares his story with another YALI Network member and 2017 Mandela Washington Fellow, Rebecca Ojedele. Ojedele is project coordinator at the African Radio Drama Association. She has written and produced over 15 different radio programs, several short videos and documentaries, and a toolkit app on various health, social and developmental issues including peace and conflict resolution. She is a leadership and conflict management trainer with the Generation Change Program of the United States Institute of Peace, where she has successfully trained emerging leaders from East Africa and Latin America. Ojedele is motivated by her commitment to contribute to the sustainable development of Nigeria.
Listen to the YALI Voices podcast to hear Agumah discuss his experience with Buruli ulcer and his mission to raise awareness of the disease, or read the complete transcript below.
U.S. DEPARTMENT OF STATE
YALI Voices Podcast: Rebecca Ojedele Interviews Emmanuel Agumah
Transcript
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♪ Yes we can ♪ ♪ Sure we can ♪ ♪ Change the world ♪
REBECCA OJEDELE: Hello, Young African Leaders. This is the YALI Voices podcast; your home for sharing the best stories from the Young African Leaders Initiative Network. I’m Rebecca Ojedele, a 2017 Mandela Washington Fellow from Lagos, Nigeria, attending my Civic Leadership Institute at the Presidential Precinct here in Virginia. I’m happy to have you here with me. I’m joined by another Mandela Washington Fellow; Emmanuel Agumah from Ghana. We all call him Chief Agumah here. And today we will be discussing Emmanuel’s work in health advocacy. Emmanuel is the president and founder of the Buruli Ulcer Victims Aid (BUVA) Foundation, which focuses on socio-economic support for former Buruli ulcer patients and those with disabilities. The organization provides health education, awareness, screening and treatment of Buruli ulcer, leprosy, Yaws, and other neglected tropical diseases.
Before we get started with our podcast, don’t forget to subscribe to the YALI Voices podcasts on iTunes and Google Play and visit yali.lab.dev.getusinfo.com to stay up-to-date on all things YALI. Emmanuel, happy to have you here.
EMMANUEL AGUMAH: Thank you very much, Rebecca.
REBECCA OJEDELE: So tell us about your organization; the Buruli Ulcer Victims Aid (BUVA). Why did you decide to start this organization?
EMMANUEL AGUMAH: Sure. Buruli Ulcer Victims Aid Foundation, which I started in 2007 and got my license in 2009, came out of my personal experience with Buruli ulcer. I had Buruli ulcer when I was in the senior high school, and we didn’t know exactly what it was and we went to all sort of traditional healers and herbalists before I realized it had, I mean, become a very big problem. So I finally got to a hospital where I stayed for three years –
REBECCA OJEDELE: – Wow!
EMMANUEL AGUMAH: And they had series of surgery on me. I was three and a half – one and a half years bedridden. I lost my dad, and life was very difficult. So after three years, I was finally discharged after nine surgeries and had to go back to school, but I was only able to go to school because I met people at the hospital, especially Dr. Kisler Sidu and then a family in Japan called Matoga family, and friends in United States that supported my education. So what motivated me was that, well, I was nobody. After I came back from the hospital and I had lost hope, but people gave me hope, so what can I give back to society? So the idea of creating awareness about the disease, which is still unheard of and also happened for my patients from Buruli ulcer who have serious disability came into my mind, and I had no other option than to establish this particular foundation.
REBECCA OJEDELE: What was your experience in receiving medical care? You said you were bedridden for one and a half years and you were in the hospital for about three years. What was – what was that experience like? Was getting medical care easy? What has been the experience for you and for other, you know, people living with this survival of Buruli ulcer? What has been the experience?
EMMANUEL AGUMAH: Thank you very much, Rebecca. The problem has to do with lack of knowledge or ignorance. People don’t know about the disease. So the experience is always very bad because you get to know that you have Buruli ulcer at the latter stage where it results in disability. And before 2005 there was no any recommended treatment for Buruli ulcer, and all people who went before that particular time were all on surgery. So it was very, very, very terrible experience. You know, this surgery involve a lot of anesthesia and you have to be off for some hours, and of course access to care was a problem, because in my case I had to travel over 200-300 kilometers to where I could access health care.
REBECCA OJEDELE: So from what you’re saying is like it’s from both sides; both the health-care providers and from people themselves. And lot of people do not even know what they have, you know, until it is too late –
EMMANUEL AGUMAH: – Sure.
REBECCA OJEDELE: And even for the longest time at the hospital, so at the health-care facilities, there was no prescribed treatment, you know, for Buruli ulcer. It was mostly surgeries and even diagnosis of it was, you know, really difficult. Is that what you’re saying?
EMMANUEL AGUMAH: That is right. Because if you refer to the World Health Organization’s video on Buruli ulcer, the first video describes it as a mystery disease. And as up to now we still do not even know the exact mode of transmission, so it was all kind of “try this antibiotic and see whether it work.” You get what I’m saying? So that was the problem. And also, the diagnosis too, it took a long a time before the WHO came out with the exact recommended diagnosis, which now we all rely on PCR (Polymerase chain reaction).
REBECCA OJEDELE: So obviously there are no readily available information on this disease or again now from your – from the time of your experience to now, what has been the shift?
EMMANUEL AGUMAH: Thank you very much. Now we have the information about this disease, especially the educational materials being developed by the World Health Organization. The problem is how to get it to the grassroot or the communities where these diseases are available or endemic. So education is key.
REBECCA OJEDELE: I have to be honest with you; I’d never heard of Buruli ulcer until I met you.
EMMANUEL AGUMAH: We have it over in 33 countries in the world. Ghana is the second-most endemic after Ivory Coast, and of course your country, Nigeria, started reporting cases –
REBECCA OJEDELE: – so you told me a few days ago.
EMMANUEL AGUMAH: – Yeah, yeah.
REBECCA OJEDELE: So it still shows that information is still not as it should be. Regular people still don’t know. So if I get infected, is it an infectious disease by the way?
EMMANUEL AGUMAH: No, it’s not contagious.
REBECCA OJEDELE: Oh, great, so can you tell us a bit about that? How do one get infected?
EMMANUEL AGUMAH: Okay, so Buruli ulcer is caused by a germ called Mycobacterium ulcerans. This bacteria lives in the family of those that cause leprosy and tuberculosis. But Buruli bacteria normally live in an environment where there is low, slow-moving water or wet areas. So people who normally live in these areas are normally children who decide to go for swimming or go in to fish around these wet areas, and some also go in search of water. So once you have a skin trauma or you have open wound on your body, and you play around this area or work around this area, then you expose your body more to infection of this Mycobacterium ulcerans. But it is so sad that when this bacteria, which has a toxin called mycolactone, enters into the body, it makes that particular area numb and you don’t feel any pain.
REBECCA OJEDELE: So it’s getting swollen, but you’re not feeling any pain.
EMMANUEL AGUMAH: Exactly.
REBECCA OJEDELE: So that’s why a lot of people call it mysterious.
EMMANUEL AGUMAH: Mysterious. And before because it’s not painful, you know, in Africa and Ghana, people only go to hospital when they are in pain, so they think maybe it will go. They will try all sort of herbal medicine, but before they realize it has been, I mean, gone bad.
REBECCA OJEDELE: I think that leads me to a question I really do want to ask you about what challenges there are, you know, in proper health maintenance. In your description, you know, of your experience just now, you mentioned a few things. We, ourself, have really poor health-seeking behavior until we feel pain, you know, acute pain in our bodies. We don’t go to health-care facilities to get ourself checked out. Also, there is also lack of information. A lot of people don’t really know a lot of things about many health diseases or many health situations in their communities. And also you mentioned something also quite important about the distance to health-care facilities. In your own case, you had to travel quite a distance to access health. So apart from all of this, and you can still talk more about this once I have enumerated, what are the other challenges there are in proper health-care maintenance in your –
EMMANUEL AGUMAH: Thank you very much, Rebecca. I think the first problem has to do with attitudinal change. People must always try to go to the nearest health facility any time they have any problem related to their health. That’s the number 1. Number 2, the biggest challenge too was the health system because we had a disease where even most of the medical officers or health workers did not know anything about. So what the WHO recommended was that we train health workers in terms of management of this particular disease. Also, we had to also train community-based volunteers who will see the early symptoms of the disease and refer to the health workers. Another problem that we also face was the infrastructure on health facilities, because until 2003, when a Spanish NGO came to Ghana to build about five theaters for surgery and of course physiotherapy, we had no facilities that could manage these. And even today there are so many endemic communities where they have to even walk about 30-40 kilometers before they can get to the main roadside. So access to health care is still a problem.
REBECCA OJEDELE: It’s a major, major problem. In fact, when you started talking, you mentioned attitudes. You know, and I’m quite intrigued as to when you got diagnosed with Buruli ulcer, what happened in terms of people’s attitude? You know, what did that experience show you, you know, about people’s attitude and their perceptions, you know, to diseases or even people living with disability?
EMMANUEL AGUMAH: Thank you very much. Today, people still think that Buruli ulcer is caused by superstition.
REBECCA OJEDELE: By what?
EMMANUEL AGUMAH: Superstition.
REBECCA OJEDELE: Superstition. Oh!
EMMANUEL AGUMAH: Like a curse, a black magic, or maybe witchcraft.
REBECCA OJEDELE: Oh, okay.
EMMANUEL AGUMAH: It’s either maybe you’ve done something wrong and you’re facing that particular –
REBECCA OJEDELE: – You’re getting punished –
EMMANUEL AGUMAH: – punishment. Or maybe you have some bright future and some witchcraft want to destroy your life. So this was the conceptions about people. And the same way my dad too didn’t believe that it was just any normal disease. So this also calls for attitudinal change. Time has come for us to believe in some basic science where there is a proven facts and of course beliefs, because we now we know that this disease caused by a germ, yet people still do not understand or believe that it is caused by a germ, so this all results in education.
REBECCA OJEDELE: Which then makes the situation worse because if people don’t even believe that, you know, it’s caused by a bacteria, you know, then they don’t know to go to the hospital to get treatment. If they think it is some witchcraft, then they will kind of resort to maybe like traditional practices or some religious institutions to get help. Have you had any experience with that? Was that your story?
EMMANUEL AGUMAH: Yes, that’s why I wrote the book entitled, My Life and Buruli Ulcer. So this is where we come in because we think that some of us, like me, who has experienced this disease and has been successfully treated, if I go to the community level, educate the people about the disease, they will definitely get the message and they would believe it.
REBECCA OJEDELE: Did you – have you experienced any kind of stigma?
EMMANUEL AGUMAH: Of course.
REBECCA OJEDELE: Do you want to tell us about that?
EMMANUEL AGUMAH: We have a stigma that is associated with a disease, because people think that you are either being black magic or witchcraft or you’ve been cursed, so that is a stigma within the disease because of its manifestation. If you look at Buruli ulcer lesions, which I showed to you, they come with a very big lesion with disability. So the disease itself has its own stigma because people don’t know and they think they’re spiritual – they don’t want to get close to you.
REBECCA OJEDELE: So there’s fear.
EMMANUEL AGUMAH: There’s fear. Now, after you’ve been treated and you’ve ended up in disability, there also comes another stigma which is not now the disease but your disability.
REBECCA OJEDELE: Tell us about that.
EMMANUEL AGUMAH: You know, in Ghana and Africa, people who have disability are normally on the streets begging. So people see you as a social outcast and they don’t want to relate to you. So this is one of the major problems because – because of disability you have been stigmatized. But disability is never inability, and that is why we’ve taken it upon ourselves to make sure people who have been disabled are economically empowered. I will say that if you have money, you have friends.
REBECCA OJEDELE: [LAUGHING] Okay, so disability is not inability.
EMMANUEL AGUMAH: That’s right.
REBECCA OJEDELE: However, people who are living with disabilities or people who are living with any medical condition, they require some support.
EMMANUEL AGUMAH: That’s right.
REBECCA OJEDELE: What kind of support do you think is needed?
EMMANUEL AGUMAH: You know, Buruli ulcer in Ghana and West Africa basically affect children that are below the age of 15 years, and these are children who are supposed to be in school. So over the years we’ve impacted in these children who have come out of the disease with disability, we’ve supported more than 15 of them. Some have completed – we give them scholarships to go to formal education. So some have completed as nurses, some are accountants working in the banks, some are also working as teachers. Those who have gone beyond the school-going age, we give them schools and vocation training. Then, we give them seed capital, we give them shops and they are operating in these. So for now, I can say we’ve supported more than 28 to 30 former patients in this particular area.
REBECCA OJEDELE: I think what I’m hearing from you is that there’s one, educational support.
EMMANUEL AGUMAH: Yes.
REBECCA OJEDELE: There’s also the support for them to be able to earn for economic empowerment of some sort.
EMMANUEL AGUMAH: That’s right.
REBECCA OJEDELE: What about like family? What kind of other support do you think is necessary?
EMMANUEL AGUMAH: The family has to accept these people and know that they are their own family. And if your family discriminates against you, then the outsider too also discriminate you. So we always advocate that their family should accept them. I know in Ghana and other places in Africa, when you have disabilities, people don’t even regard you as a full human being in the family. So this is something that –
REBECCA OJEDELE: It’s like you are lesser than the other siblings.
EMMANUEL AGUMAH: That is right. So we are encouraging the families that they need their support than ever.
REBECCA OJEDELE: And it’s not the case, really. You’re not lesser than other siblings.
EMMANUEL AGUMAH: That is true.
REBECCA OJEDELE: So I know you’ve mentioned if you want to go back to the issue of challenges and, you know, you’re from Ghana –
EMMANUEL AGUMAH: – Yes.
REBECCA OJEDELE: – And to talk about the Ghana experience, not just about patients or survivors of Buruli ulcer, you know, but I wonder, what are some of those challenges that are facing those seeking medical care, you know, in Ghana? What interventions are there in the country or in your community to support communities and individuals’ health?
EMMANUEL AGUMAH: Thank you. I think in Ghana the Ghana Health Service established a national Buruli ulcer control program in 2003. At the initial stage, the government supported it. But over the years, for the last five years – I don’t whether it’s financial challenges – they have not received any support in terms of financial aspect apart from the human resource. So that office is basically not very active. We also have this global Buruli ulcer initiative based in Switzerland, in Geneva, at the World Health Organization, that has provided treatment, materials like the antibiotics, which is free. So this is at the national headquarters level, and any time that a case is being detected these are supplied to the centers for free treatment. The other challenge that we have is the outreach programs – how to get to all these endemic districts to educate the people about the disease and screen them, because the cases are there. We have over 70 districts in Ghana that are highly endemic for Buruli ulcer, but I can say that only five of these districts have an active program on this particular project.
REBECCA OJEDELE: Are there lessons you’ve learned from this program – this Mandela Washington Fellowship that you’re in – we both are in together – are there key lessons that you’re taking back home to help with your work?
EMMANUEL AGUMAH: Exactly. I think I’m still in the learning process, but I’ve learned a lot, especially in areas of leadership, how to negotiate and how to also brand yourself, your organization, and of course how to make your story attractive to others to buy into that –
REBECCA OJEDELE: – Yeah.
EMMANUEL AGUMAH: It also tells me how to also brand Buruli ulcer in such a way that people would love to come into the fight against Buruli ulcer and other necrotic tropical diseases. I’ve also learned something more about gender equality and of course how to empower women and also how to design a particular program, which we learned about design thinking, so I have to design something out of this to modify my ways of activities, and I think it’s very helpful and I’m very grateful to be part of this program.
REBECCA OJEDELE: So you’ve learned storytelling, which you know I’m really passionate about.
EMMANUEL AGUMAH: That’s right.
REBECCA OJEDELE: And the power of using your story for your cause because it’s good to put a human face. You are a survivor, for example, and you can share your story; you can share your experience for people to understand what the disease is and how they can survive, how they can make the best of their life despite what you’ve gone through. Thank you for that. What about the YALI Network? Have you – how have you interacted with the YALI Network, which you know have over 500,000 members –
EMMANUEL AGUMAH: – Yes.
REBECCA OJEDELE: Young Africans. Are you part of the Network, by the way?
EMMANUEL AGUMAH: Fortunately, automatically I’m part of it.
REBECCA OJEDELE: Automatically.
EMMANUEL AGUMAH: As a YALI Fellow, but my problem in the last few months before I came here was because I had limited access to the internet –
REBECCA OJEDELE: Okay –
EMMANUEL AGUMAH: And you know my work relates to more community base, so I’m always in rural communities. Sometimes I run the borders that are in different countries, so access to internet was a big problem.
REBECCA OJEDELE: So now how do you plan to use the YALI Network?
EMMANUEL AGUMAH: I’m going to be very active to use the –
REBECCA OJEDELE: How?
EMMANUEL AGUMAH: And I want to do all the courses and –
REBECCA OJEDELE: Oh, great, because they are about 18 courses on the YALI Network.
EMMANUEL AGUMAH: I will do them all.
REBECCA OJEDELE: Great.
EMMANUEL AGUMAH: I will do them all. This is – was my – I plan to do –
REBECCA OJEDELE: I will be asking you.
EMMANUEL AGUMAH: And you know, my work relates to community events and stuff, I would like to integrate some of the YALI programs –
REBECCA OJEDELE: There are actually courses on community organizing. So you may find that really useful.
EMMANUEL AGUMAH: That’s right.
REBECCA OJEDELE: You may find that useful. And there are lots of other programs as well. There are lots of resources. You know, you can use – you’re on Facebook, right?
EMMANUEL AGUMAH: Absolutely.
REBECCA OJEDELE: Absolutely. So you can use your Facebook for causes. You said you love the issue of women empowerment. There are lots of YALI Network courses that you can also stand for.
EMMANUEL AGUMAH: And YALI health – health, you know –
REBECCA OJEDELE: Great.
EMMANUEL AGUMAH: That’s number 1.
REBECCA OJEDELE: Okay, so here we joke with you a lot and we call you Chief Agumah, because we know you as a health expert, but what will really surprise people about you? What is it about you that a lot of who don’t know, but when they find out, they will find really interesting.
EMMANUEL AGUMAH: Well, one thing people will be surprised to know or find interesting later is that I have great political ambition –
REBECCA OJEDELE: Oh, great.
EMMANUEL AGUMAH: Yeah, and I think I even plan to even contest my candidacy in 2020. I have good friends who have pledged their support that they will give me, because I belong to the school of thought that says that make a greater impact in society and let the society feel that you deserve to be their leader. And this is what I think I’ve started over the years. So I would like to do more impact in the society or the community where I come from, so that I will be a great leader to them –
REBECCA OJEDELE: So you want to start as a counselor?
EMMANUEL AGUMAH: No, I want to start like a parliamentary. Parliamentary. Yeah. I have a great challenge and competition over there, but I know I have done some work under the ground in terms of community impact compared to the previous parliamentarians who just came that I want to be voted. But I still think that I have more work to be done to make the communities a better place, improve their health systems, so that if I come they would know, “Oh, this guy has already done this for us, so let’s also help support him.” You know, in business we have a Latin word we call quid pro quo – something must be given in exchange of something – that is the law of consideration.
REBECCA OJEDELE: So it’s like in two weeks – one, your work in community organizing and community interventions, you think will garner you support from the grassroot, from the community to launch you into your political career. And on the flip side, you’ve been in the community, so you’re not unaware of the needs of the people. You’re not just a city person who is ambitious just for the sake of it, but you have – you’re grounded – you know what their needs are. And I think that’s very valuable, especially now, you know, when we need our political leaders to be more visionary, to be more impactful. That’s great.
So I’m sure a lot of people will be interested in your work. Someone like me, for example, hearing Buruli ulcer for the first time –
EMMANUEL AGUMAH: – We need to partner –
REBECCA OJEDELE: Exactly. [LAUGHTER] Of course I’d love, love to tell you that we’ve started with this platform of YALI Voices. So what if people want to get in touch with you? What’s the best way?
EMMANUEL AGUMAH: Well, you can always get me through my website.
REBECCA OJEDELE: Okay.
EMMANUEL AGUMAH: Website is www.buvafoundation.org – BUVA Foundation, all one word. www.buvafoundation.org.
REBECCA OJEDELE: Okay.
EMMANUEL AGUMAH: And also on Facebook you will see a page called BUVA Foundation. And the easiest way to get me – I always tell people just type my name, Emmanuel Agumah, on Google.
REBECCA OJEDELE: Oh, Google will just bring it up?
EMMANUEL AGUMAH: Google will just bring my pictures and most of the works I’ve been doing; videos that the World Health Organization has made on Buruli ulcer, which some of them features me. Yeah.
REBECCA OJEDELE: Great. Do you want to spell – so people who –
EMMANUEL AGUMAH: So Emmanuel Agumah. A-G-U-M-A-H.
REBECCA OJEDELE: All right. Thank you so much. It has been really wonderful and we appreciate your perspective and commitment that you bring to our cohort here at the Precinct. Thank you so much, Emmanuel.
EMMANUEL AGUMAH: You are most welcome.
REBECCA OJEDELE: Thank you everyone for tuning in to another YALI Voices podcast. And thanks to Emmanuel for sharing his perspective today. But be sure to come back for more inspiring stories from Young African Leaders on the YALI Voices podcasts.
Our theme music is “E Go Happen” by a fellow presidential precinct alumna – a 2015 Mandela Washington Fellow – Grace Jerry. This podcast was recorded in the Porter Studio at James Madison’s Montpelier, a partner site of the Presidential Precinct. James Madison was the fourth president of the United States and is known as the father of the U.S. Constitution. Montpelier is now home of the Robert H. Smith Center for the Constitution. The YALI Voices podcast is brought to you by the United States Department of State and is part of the Young African Leaders Initiative, which is funded by the U.S. government.
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