Welcome to Chronicity Care Africa’s Chronic Care Matters podcast.
More Africans around the world are living with chronic diseases than ever before. Conditions like diabetes, hypertension and cancers have a negative impact on many aspects of everyday life, from diets to finances, and affected individuals and families often struggle to cope. Care is at the heart of chronic disease prevention and management, and of living a full healthy life in spite of chronic illness.
The Chronicity Care Africa platform shares evidence based practical advice on how to prevent and manage chronic diseases, how to care for people in our lives who live with chronic diseases, and how caregivers can be supported.
In this monthly series, we shine a light on some of the most pressing issues emerging from research and social concerns on chronic disease experiences and care. We do this through conversations with researchers and advocates who are working with African communities on the continent and in the diaspora, and with individuals and caregivers with personal experiences of chronic illness. Thanks for joining us.
Today, Dr Raphael Baffour Awuah (RBA) speaks to Mr Ferdinant Sonyuy (FS), who is currently the Secretary General, of the Cameroon Civil Society NCD Alliance.
RBA: Ferdinant Sonyuy is a health and community development advocate with a focus on NCDs. His training is in public health with a focus on health promotion. In 2019, he was a US Department State Community Solutions Fellow, and was also a fellow of the Union for International Cancer Control, which was hosted by Jordan Breast Cancer program of the King Hussein Cancer Foundation. Again in 2019, he was one of the Young World Ambassadors on AstraZeneca’s Young Health Program. He is the founder of the National Youth NCD Action Network in Cameroon and the Chair of the secretariat as well as the Central African regional representative of Africa NCD Network. Ferdinant is currently the president and CEO of Reconciliation and Development Association, and also serves as the Secretary General, Cameroon Civil Society NCD Alliance. Thank you for making time to join us today, Ferdinant!
FS: Thank you so much. It’s a pleasure for me to be with you.
RBA: I’ll start off by asking how you got into NCD advocacy?
FS: So, first of all, when I was 17 years old, I lost an aunt who was very close to us. And in fact, that was the first time I had the experience of being in the same vehicle with someone who had died. And so, I had the opportunity to know from my mom, who was a nurse, that she (Aunt) died from complications of diabetes. So, when I went to the university, I had an experience where one of our lecturers teaching us metabolic biochemistry was trying to encourage us career wise, and he said that, we shouldn’t pick up our research career in hypertension or diabetes because there’s no money in it; and also, because it’s difficult to have results when you do research in these areas. He encouraged us to pick up jobs and research in HIV and malaria because there’s enough money in it. Immediately, I felt more like he was saying I should let my aunt and a thousand others like her to die. And so, there was something that woke up in me and I basically told myself, the other classmates should go ahead with HIV and malaria, I’m going to go ahead with diabetes. So, when I finished my university, I picked up my first job as a finance clerk. And as I was growing in that job as a finance clerk in a health system, I started working on what the health system was doing or the health organization, the CDC, what they were doing on diabetes. And that’s how I started working on NCDs. And the passion in that area continued to grow, but it skyrocketed when I learned about advocacy. I attended a training session organized by FHI 360 on advocacy, and I realized that advocacy was actually one of the best methods to bring change in any area. So, this really motivated my interest, really raised my hope and made me get very engaged in NCD work, because I now believed I could bring a change in this domain.
RBA: That’s a very interesting journey. Can you tell me about your current organization focusing on Cameroon Civil Society NCD Alliance – regarding when it was established, what it does and how this relates to this project, which is the chronicity and care in African contexts?
FS: So, when I started working on NCDs, when I was with the Cameroon Baptist Convention Health Services as program manager for its non-communicable disease prevention and control program, one of the key areas I decided to work on was advocacy. And I knew that advocating would not be effective when it was done by one organization. So, I worked with the leadership of the organization to try to establish the Cameroon Civil Society NCD Alliance, and with technical support from the Global NCD Alliance, we finally established the Cameroon NCD Alliance in 2018. With the leadership of Professor Jean Claude Mbanya and myself as interim. We led it right up to 2020, where we were officially organized as a board to have the first mandate to work on the Cameroon NCD Alliance agenda. So, the mission of the Alliance is to ensure a collective voice for NCDs in Cameroon. Currently, we have about 11 members in the Alliance. The members of the organization we have are mostly civil society organizations (including Cameroon Baptist Convention Health Services (CBCHS), Health of Populations in Transition and the Cameroon Coalition to Counter Tobacco) forming part of the Alliance in Cameroon. So, we work together to see how we can do some shadow monitoring of what commitments the government has made and how they are living up to those commitments. We also try to ensure that NCDs are prioritized in Cameroon and clearly following up to ensure this. I’m not sure that there will be a lot that can be done on NCDs in Cameroon if civil societies are not active. Well, I think so far, since 2018, we have been active – we have been trying to make sure that actions on NCDs are prioritized in Cameroon. Starting with raising the voice, as well as the needs and the priorities of people living with NCDs in Cameroon. If you take for example COVID-19, this period of the pandemic, we have been able to reach out to the government on the importance of including not just language, but action, around people living with NCDs in the COVID-19 response. We have also tried to make sure that the national multi-sectoral strategic plan for NCDs is in place. And that is one of the key activities that is going on now at the government level. Because there is peer demonstration of the importance of this strategy, as well as the existence of the national multi-sectoral committee for NCD. Now, all of these have to translate to helping people living with NCDs, and so, for now, these are mostly the frameworks that are necessary, that should exist, and we are looking at how those frameworks can now translate to supporting people living with NCDs. Nonetheless, while those big umbrella frameworks are being worked on, there has been a lot of encouragement from the Alliance to the members to continue to raise awareness on NCDs and pushing for it to be prioritized. But also, meeting the needs of people living with NCDs, particularly diabetes and hypertension patients. For the past three years, there were several projects that we encouraged including projects that were directly taken care of by people living with NCDs. I will just end by giving two examples. There was the project to strengthen the services for people living with diabetes and hypertension, which was implemented. I led that project in eleven health districts across 6 regions. That project was able to reach and to take care of at least 12,000 patients, and also were able to reach out to different communities with training, as well as with directives for patient care at the different levels of health in those districts. And the second project was what we called the ‘know your numbers project’. That project has been able to reach out with awareness of chronic non-communicable diseases, the risk factors, and the burden to more than 60,000 people. So, these are some of the activities that you find members of the Alliance engaged in. And more members are becoming interested in really engaging and re-engaging in activities and initiatives that will prioritize NCDs, sustainably in Cameroon.
RBA: Can you also tell us a bit about Reconciliation and Development Association, where you are the President and the CEO. Again, with regards to when it was established and what it does?
“Several community challenges are opportunities in disguise.”– Ferdinant Sonyuy
FS: Reconciliation and Development Association (RADA) was conceived in 2009, basically in response to the glaring need for young people to be active, to be productive and to support the community with their energy and numbers. This was actually an initiative which was started by myself and a couple of friends. We wanted to just be examples of youth who should work hard and not depend on government. And so that’s how RADA was conceived in 2009, but it was finally registered or legalized in 2017. And then, by 2020, I took off fully as the CEO and President of RADA to really be able to make our goals come to pass. The basic rationale of RADA rests on the fact that we have several community challenges that are opportunities in disguise. That means that our problems are not just to be looked over, our problems are opportunities for us to actually create the changes that we want to see. Problems are like flags that are raised to say that there is something we need to do here. The mission of RADA is to support community development by building bridges to sustainable solutions in the domains of health, education, agriculture, technology and sustainable peace. If you look at these domains, you see health is very prominent, and that is where most of the work that I do on non-communicable diseases comes in. So far, it is under the leadership of RADA that we established the national youth NCD Action Network, which is focusing on ensuring that young people are not only aware of NCDs but, they are able to be supported to walk the talk on NCDs, and that they are also able to join the advocacy for NCDs because NCDs also affect the youth very uniquely. They have to be part of the solution. So that is how RADA came about, and that is what we do. And that is how RADA connects to non-communicable diseases. Currently in RADA, we are also implementing a project on developing a front of package labeling and legislation for Cameroon. So, we’re currently in the process of developing the front of package labeling or designing, and it has three phases; it has the research phase, it has the design phase, and then it has the advocacy phase for the legislation itself to be passed so that we can try to reduce such conditions in Cameroon.
RBA: How has Cameroon Civil Society NCD Alliance, and to an extent the Reconciliation and Development Association (RADA) been involved with national level efforts to improve noncommunicable disease outcomes?
FS: Well, as far as the Alliance is concerned, I think the first key project that the Alliance has worked on was during the COVID-19 period. Unfortunately, nobody expected COVID-19. So, we were bracing ourselves as an Alliance to start our advocacy and convening activities, because the Alliance is not necessarily really an implementing organization. We are basically a convener and also a supporter, promoter and an advocacy organization. So, we had to first of all start with what was before us, which was COVID-19. What we did was that we looked at what the COVID-19 response in Cameroon was, and where NCDs were placed in that response. And sadly, NCDs were really not considered in the Cameroon COVID-19 response. And so, we made a case for that through a study and then we were able to be invited to be part of the national response committee where we are continuously pushing for the state to recognize and take action towards the needs, the priorities and challenges of people living with NCDs in Cameroon. That has been challenging, but we’re also encouraging our members and other stakeholders to intervene for people living with NCDs. So, RADA has also since 2020 been working on this on a different project on NCDs. Starting with the youth project, the national youth NCD Action Network has hosted quite a good number of webinars because most activities now went online due to COVID-19 – webinars on mental health for the young people, and webinars also just to raise awareness on NCDs. Apart from that we have continued with this project on salt reduction, which is one of the flagship projects that RADA is working on now. Developing a front of package learning legislation for Cameroon. So those are the few projects that we have engaged in at the national level for Cameroon NCD Alliance and at a level of RADA. Apart from that we have joined the international community to commemorate two sessions of the global week for action on NCDs. Which always involves week-long activities that are intentionally designed to raise awareness on issues around NCDs and to advocate for issues around NCDs. So, for this year’s global week for action, for example, we organized a commemoration match between the elderly and amputees. This gave us an opportunity to bring together key regional delegates including the regional delegate of health, the regional delegate of sports and physical education, the regional delegate of social affairs, the mayor and a couple of leaders around the region. They were able to listen to key messages around NCDs from the people living with NCDs that we brought on board to actually speak to them. This is just an example of how our activities are gaining grounds in Cameroon.
RBA: What in your view are the major barriers to reducing the risk of NCDs in Cameroon?
“Poverty causes NCDs and NCDs also cause poverty.”– Ferdinant Sonyuy
FS: So, I think that the first barrier to reducing the risk of NCDs in Cameroon, I would say, is the level of interest that is not translated into action, especially at the level of government. We have commitments that have already been made, but most of these are not really taken up and followed through for implementation. They basically just end up on paper. So, there is no intentional follow up or follow through of commitments that are made, especially at the national level. This would have really made some acceleration towards the kind of progress that we want to see on the national front. And secondly, there is the big challenge of implementation of even national laws. Currently, we have some national tax laws that I think are not really enforced. I can’t really say whether the challenge is at the level of the police, health ministry or at the level of territorial administration. There is that challenge in implementation of laws. So there needs to be some strengthening around how to implement laws that have been passed or policies or regulations that have actually been successfully passed in Cameroon. I think poverty is also another challenge. Of course, we know that poverty causes NCDs and NCDs also cause poverty. So, we have poverty as a challenge where many of our people living with NCDs are unable to afford their own care. They need to do several tests at the clinics. If you really have to do all the tests that one has to do, as the person living with NCDs, you have to spend some money within three months of one’s care. You have to spend some money. There’s a test that you can stay for up to three months without doing, you could stay for one month. You could do a particular test, and then you don’t do it like within two months, but not up to three months. And so, when you look at this, it’s not just about going to the hospital and maybe paying a particular $1 or $2 to get your specific medication. There needs to be continuous, real monitoring of a patient’s life or patient’s body, and that costs money. There is also a cost attached to healthy living, and so people are not really able to afford what it takes to live healthy in terms of buying healthy foods and living by that. Today we have the risk factor of unhealthy diets as well, which of course is a huge issue. In 2016, healthy diets took over from tobacco as one of the major risk factors for NCDs. And to prevent NCDs by ensuring that we eat healthy diet is a tug of war. It’s a serious task. It even requires policies that support healthy dieting, and we are still very far from these kinds of policies. If you look at even agriculture where you have the need for farmers to cultivate healthy produce, we are still very far from farmers having healthy produce. At this point in our country, we have farmers that misuse fertilizers and chemicals, and this translates to more disease in the community because most of the farmers are poor and they are focused on having large produce that they can sell and send their kids to school or have money for their daily living. And so, this is just one risk factor which is challenging to tackle even from an agricultural perspective. So, you have shortage of healthy foods where farmers are unable to produce healthy foods, because the few farmers who try to go organic, they end up not being able to sell their crops since their crops are expensive and nobody is willing or available to buy. Or they are not trained enough in marketing to get those who are willing to buy. And so, I think that in the end, there is the need to be this visionary combined force that enables both those who have understood the importance of healthy diets, and maybe the farmers who are able to produce healthy produce, so they could be able to buy. But until then, that’s just an example of how challenging it is to prevent NCDs from the healthy diet perspective. We also have a lot of sugary sweet drinks, both imported and made in the country. It’s just amazing the different kinds of colors of drinks one can drink nowadays and all of these are not healthy. But that’s what people are consuming. So, it’s very challenging to actually prevent NCDs if we don’t have policies in the country that can regulate some of these kinds of trade that is responsible for exposing many people to the risk factors.
“Cost attached to healthy living, and so people are not really able to afford what it takes to live healthy in terms of buying healthy foods and living by that.”– Ferdinant Sonyuy
RBA: What advice would you give to someone who is struggling to manage their chronic condition? In answering this question, I would want you to think about a case study and from your professional or personal experience.
FS: I think that people who are managing their NCD condition need to come out to the right people. What I mean is that it’s very difficult to do this in isolation. First, they need to stick to their medication. They need to identify a clinic that is very intentional and supportive enough for their care as a person living with NCDs, and then they stick to their medication as their follow up plans. But a lot of work has to be done by the individual, that especially includes healthy eating. Because that’s to me the cornerstone of successful control or successful self-management – it is what we eat. So the person has to invest in that. The person should be open to seek support from the right sources, especially organizations working on NCDs. They (the organizations) can support them so that they can actually remain healthy. The other area of support that I will advise is that, when someone living with NCDs is able to engage openly with organizations working on NCDs, you know their participation in that sense becomes a fuel in helping, not just them, but every other person living with NCD. So, they shouldn’t hide, they should be able to come out and work with advocates and with organizations and even their own clinics to continue to push for and advocate for better services. Because no one can argue with their (people with NCDs) experience. Therefore, their experiences are very critical to improve chronic care. Their experience is very critical, and they should get involved in advocacy and that will be opening up more opportunities to serve them. And also, to provide support that they might need in better self-management or better management of the chronic condition.
RBA: Caregivers play a very important role when it comes to NCD outcomes. What advice would you give to a caregiver?
“Food for people living with diabetes is good food for everyone.”– Ferdinant Sonyuy
FS: I think the caregivers, like you said, are very important. One thing I have noted with caregivers is that they need to be very careful about what they eat around people who they are caring for, that is, the people with NCDs. A caregiver knows for example, that someone with an NCD does not need to eat a particular kind of food or a certain amount of a particular kind of food, so they should not eat that food around them. They should really be an example. We always say that the food for people living with diabetes is good food for everyone. So, I think caregivers have to be empathetic and have to be supportive to the people they are taking care of.
RBA: Given your background in NCD advocacy, what would be the key lessons that you’ve learnt in doing NCD advocacy?
FS: I think one of the first lessons I’ve learned is that we don’t really have so many people very interested in the domain of NCDs. It always sounds very complex to many people, and that may be the reason why many don’t get involved in the fight against NCDs. I think we need to continue to make it simpler by how we explain what NCDs are, and how they affect us so that more people can get engaged. The second thing I’ve learned is that leadership is very important for any impact to be made in any domain. John C. Maxwell is a leadership trainer, and he said everything rises and falls on leadership. I agree very much with him because I saw this when I started the NCD program of the CDC health services between 2000 and 2016, but this actually started from 2013. Which means that it took from 2013, a lot of hard work on the background to convince a whole organization to finally be able to have an NCD program started. So that shows how important leadership is in having an impact created. I think, one of those key lessons is that leadership in NCD prevention and control is very important, and if it is lacking there is no progress. There will be no hope for progress. There must be people who know and are passionate about prevention and control so that we can have progress. I think the last thing I’ll say that I’ve learned, which I would like to share as a lesson here is that people don’t need to wait until they are personally affected by an NCD before they act on NCDs. We need to learn to educate people in such a way that they know that NCDs can affect everybody. They should be able to fight against NCDs and so join the fight against NCDs very strongly. Even when they themselves have not been affected by an NCD, or when their child has not been affected by NCD, or their mother or wife or husband has not been affected. There are some people who have a cancer foundation or cancer NGO, maybe because the child has died from one. I’m not saying that there’s anything wrong with that, but almost in all cases when you see organizations named after people, they are people who have been deceased, or people who had suffered from the condition. Then there is this impact on the community where people want to say, okay, now this is what happened to our uncle or auntie and so we are doing this in their memory; we are doing this to save more people from going down this road. This is a lesson I’ve learned and let’s try to continue to encourage people to get involved, even when they have not been personally touched by something. There is someone who was a key leader in government, and he had to be taken to the US for a heart surgery. And when he came back, that was when many other people around him understood the importance of exercise because that was told to him. So, he started doing exercise. As a big person, as we call it in our community, a big man, he now became an example in terms of the need for exercise. And many more people started doing exercise. And I know another situation where another big man’s mother had a kidney condition. When they went to do dialysis, they told him the amount, and he realized that this is what poor people go through for dialysis, a hundred thousand. He immediately set out some funds and finally kidney dialysis in Cameroon now is far much lower in cost than it was about five or six years ago. So, when we speak to policy makers, when we speak to leaders, when we speak to government, when we speak to member states and to organizations, they should listen and hear the needs of people with chronic conditions. They don’t have to be personally affected before they can act on it.
“Let’s try to continue to encourage people to get involved, even when they have not been personally touched by something.”– Ferdinant Sonyuy
RBA: How has the COVID-19 pandemic affected you or your organization’s activities?
FS: I think COVID-19 has been one of the very serious challenges that we have had. We had staff been infected and they had to be at home. So, there’s hours of work lost. There is pain, and there is a postponement of activities. It’s just been a sad situation to see how practically this virus has affected our work. Secondly, we’ve had to struggle with funding for our work, for our vision, for our activities. Because of COVID-19, everything has slowed down. We have not really been able to have the chance to see and to apply for funds because of the kinds of restrictions that we find in the funding community right now. So those are just a few examples. COVID-19 has been a stress. It has stressed up our organization, it has stressed up a lot of people including our staff. And it’s not been good at all.
RBA: What are the future goals for Cameroon Civil Society NCD Alliance, and how do you intend to achieve these goals?
FS: For the Alliance, we want to make sure that we establish an Alliance that is consistently a voice for people living with NCD in Cameroon. The voice that is being translated to action by both members and the stakeholders like government, relevant private sectors and academia as well. So, we are hoping to work on our shadow reporting every year, where we are able to do a kind of progress monitoring for our country. That progress monitoring should lead to our annual high-level NCD meeting in Cameroon. That should also help the stakeholders come together and be able to push for some priority actions in response to the burden of NCDs in Cameroon. We want to reach that level where we are constantly encouraging, holding to account and just strengthening actions for NCDs in Cameroon. Because it’s been slow, and it definitely needs to be strengthened.
RBA: Great. Thank you very much for your insights, Ferdinant. It’s really been a pleasure having you.
FS: Thank you so much, Dr. Awuah. Thank you very much for giving me this opportunity to speak with you.
RBA: Great. But before I end, I’m just wondering if you have any questions for the Chronicity and Care Project?
FS: No, just a positive comment to say thank you for the project. I’ve always been hoping that there will be more projects and activities that reflect the needs around NCDs in Africa. And this is one of them, which I’m really grateful to participate in. Thank you.
RBA: Great. I thank you so much once again, Ferdinant, so I’m sure we would definitely be in touch in the coming days and weeks.
FS: All right. Thank you very much.
Thank you for listening to Chronicity Care Africa’s Chronic Care Matters podcast. For more great content on the theme of Chronicity and Care in African Contexts, please visit our website www.chronicitycareafrica.com and follow us on LinkedIn, Instagram and Twitter [at] Chronic Care Matters. See you next month.
Ama de-Graft Aikins and Raphael Awuah produced and edited the audio of this interview. Ama de-Graft Aikins and Jemima Akosua Okaikor Okai adapted it for the web.