Welcome to the Chronic Care Matters podcast, a conversation series of the Chronicity and Care in African Contexts Project.
Chronic Care Matters features conversations with individuals and caregivers with personal experiences of chronic illness, and with researchers, health professionals and advocates who are working with African communities on the continent and in the diaspora. We explore life stories, as well as themes like food, faith, medicine and the mind – tools we can use to prevent and manage chronic diseases, to care for ourselves and for loved ones who live with chronic diseases, and to support caregivers. Thanks for joining us.
Today, Dr Raphael Baffour Awuah (RBA) speaks with Mr Christopher Kwizera (CK).
RBA: CK has experience in community and public health education and promotion, strategic leadership, and programme development. Between 2009 and 2010, he was the project coordinator responsible for coordinating malaria, reproductive health and HIV/AIDS programmes among refugees in selected refugee settlement camps (in Uganda). He was also the public health specialist and project manager at doctors with Africa in southern Sudan where he was responsible for public health and nutrition programmes in eastern lake state, southern Sudan; and also, the lead in planning and implementation of primary health care and wash project at the community, health facility, county and state levels. Christopher is currently the program manager and chief executive officer of Uganda NCD Alliance where he is responsible for the overall management of the organization’s resources, partnerships, donor relations and activity implementation. Thanks for your time, Christopher.
CK: Most welcome Raphael.
RBA: I will begin by asking, how you got into NCD advocacy?
CK: Thank you so much Raphael, I got into NCD advocacy by way of getting recruited in a government NCD programme as manager but at that time I didn’t have passion for NCDs. Having experienced NCD myself, and of course at home – that is when I developed the passion. I got diabetes for some three to four years, which I survived, but I also have a daughter who is asthmatic, and she’s lived with the asthmatic condition for some time. My father before he died last year in August, has lived with stroke for 25 years. And 8 years to his death he suffered from asthma. Because of that I got passion for NCD and of course through all that time the people living with NCD had challenges with the country – nobody was giving them the attention. So, when I got the chance to work with Uganda NCDA, that gave me the opportunity and the platform to change things.
RBA: So, your journey or background in NCD advocacy has been a very personal one as a person living or who has lived with NCD and also with close family members living with NCD as well. But let us switch to your current role at the Uganda NCD Alliance. Can you tell us about Uganda NCDA – regarding when it was established, what it does and how this relate to this project, the Chronicity and Care in African Contexts?
CK: The Uganda NCDA is a civil society organization that leads all civil society organizations in Uganda to respond to the NCD challenges. The alliance was founded by three organizations, that is, the Uganda Diabetes Association, Uganda Cancer Association and Uganda Research Foundation. The alliance came into existence in 2010 – that was when it was founded, and fully registered in 2012 under the Uganda registration services bureau and later on Uganda bureau. Since then, we have established 11 branches across all the four regions in the country, Uganda. We also have partnership locally with the local government through the district health department. We also have a partnership with the Ministry of Health. Regionally, we are a member of the East Africa NCDA; which means that we sit on the board. At the continent level, we are a member of the Africa NCD network and globally, we are a member of the global NCDA. Our partnerships are also more diverse from federation, so we also have partnership with the American Cancer Society, and we also have partnership with Ugandan Cancer Association. Basically, that is the Uganda NCDA.
The Uganda NCDA is a civil society organization that leads all civil society organizations in Uganda to respond to the NCD challenges. The alliance was founded by three organizations, that is, the Uganda Diabetes Association, Uganda Cancer Association and Uganda Research Foundation.– Mr Christopher Kwizera
RBA: How has Uganda NCD Alliance been involved in national level efforts to improve NCD outcomes?
CK: One of the reasons that Uganda NCDA came into being was that there was the challenge of NCDs which needed response at the time, even then, the Ministry of Health didn’t have an initiative. So, the Uganda NCDA (was) born out of the need and demand for response to the NCD challenge especially in Africa and in Uganda. We started with the Ministry of Health to ensure that there was an institution and initiative from the side of government. So together with the Ministry of Health, we established the NCD Alliance. So, with our advocacy, while engaging the Ministry of Health and other government officials, we have seen that grow to a fully fledge department to accomplish the vision of lifestyle diseases and chronic lifestyle diseases as well as substance use department, where each of them is headed by an assistant commissioner, and a whole NCD department is headed by a commissioner. So, to us, that is one of our achievements, we engaging the government, and the government has been responsive. As I speak now, the NCD department and the Ministry of Health are trying to take charge of NCD services in the country. Basically, that’s our achievement now, our engagement with the government.
RBA: What do you think are the major barriers to reducing risk of NCD in Uganda?
CK: Thank so much Raphael, the biggest barrier we are facing is that Uganda being a developing country, we are still faced with the burden of communicable diseases and of course NCDs, making it a double burden. We also have a triple burden because we are faced with maternal challenges, and we also have the problem of malnutrition, [underdevelopment] and all these affects us. And because initially, NCDs were viewed as the diseases of the rich and later was seen as the disease of the elderly and because there are always drugs and people responding to NCDs are always acute. They are acute in nature and require immediate attention. Of course, with their treatment, results are seen immediately, unlike the chronic illness that one has to live with for a longer period of time, when they are on treatment you do not see the outcome properly. But that’s the biggest barrier, the attitude of the people and the perception and the myth about the diseases. And there is also the issue that our health system is poorly funded. Government has been responsible for 20 percent, but the remaining 80 percent is from development partners and donor funding and around 45 percent and 35 percent is out of the pocket – people paying for their own services. And of course, it is very expensive managing NCDs when somebody is paying from his own pocket because these are chronic in nature some have to live with it for long, and they keep paying and paying. And of course, there is reduction in their productivity even at work or otherwise. For that matter therefore, we realized that it is the biggest barrier in our country which we have to check. But of course, the major issues are lack of funding, response from the government because the government is taking up so many things.
RBA: What advice would you give to someone who is struggling to manage their chronic conditions? I want you to think about a case study from your professional background and all your personal experiences. So, what would be the advice you will give to someone struggling to manage their condition?
CK: Advice number one is that they should by all means cooperate with the doctors and health care professionals. Whatever advice they (the doctors and health care professionals) give, they (patients) should take it. And number two, they should also know that chronic illness is something that they are going to live with for a long period of time and therefore they should be able to take their medicines on time and know that it is part of them. And they should continue with exercise and avoid things that will put them at further risk of complications. So, they should be aware of the complications for it not to rise. And they should also know that when it is well managed, the condition might not kill them, but what will hurt them most are the complications that comes with poorly managing the condition. Most importantly they should adhere to health care professionals’ advice.
We also have a triple burden because we are faced with maternal challenges, and we also have the problem of malnutrition, [underdevelopment], and all these affects us. And because initially, NCDs were viewed as the diseases of the rich and later was seen as the disease of the elderly and because there are always drugs and people responding to NCDs are always acute. They are acute in nature and require immediate attention.– Mr Christopher Kwizera
RBA: Caregivers play a very important role in NCD outcomes, what advice will you give to a caregiver?
CK: Are we looking at the caregiver as a professional or a relative supporter?
RBA: It could be both.
CK: Okay so let me look at the side of the health care professional, number one they should have a lot of patience with the patient who is suffering from the chronic illness. And they should also be able to seek and do research, because diseases keep changing as we live in a dynamic world. So, they should seek knowledge, to know if there is a change in any treatment or care; they should be always updated with knowledge. Like I said they should also be patient with the patient because many times, the patients themselves turn out to run out of patience. They should of course know that the outcome of managing a chronic illness is not as fast and immediate as managing an infectious disease. Basically, they should be abreast with the knowledge if there is any change, and they should also be patient with the people living NCD. And then on the side of a relative or supporter, just like I said they should know that a person living with NCD need support because at many times their productivity at work and whatever they do goes down. And as the disease continues the cost of managing and caring for them also increases and their dependency continue to increase as they live with the disease longer.
RBA: What lessons have you learned from doing NCD advocacy, given that you have been in this space for a number of years now?
CK: There are quite a number of lessons. One is that the NCD or chronic illness is not the illness of the doctor. The doctor and health care professional should learn and work with the patient as with himself or herself, if there should be any success in the management. Then number two, I also realized that prevention is better and cheaper than treatment. At any time where somebody gets a chronic illness, with time they succumb to the chronic illness but what is important is that they manage themselves so that the complications that will arise and hurt them may be postponed. And of course, another thing that I have learnt is that, managing NCDs is very expensive because it is cheaper in the short term but somebody living with it for a long time is expensive. Therefore, we should emphasize on prevention for those that have not develop the disease. For those that have the disease I think it is very important that they are maintained in treatment and adhere to treatment so that they postpone the complications which in many cases is very expensive. For example, if somebody is diabetic and develops some kidney complications, when they go for kidney treatment it is very expensive. They may also need a transplant, or they may need dialysis. Sometimes the treatment is not available in your country so you would have to fly out and some don’t have that money. So those are some the reasons that these conditions are very expensive if it gets complicated.
And they [Health professional as Caregivers] should also be able to seek and do research, because diseases keep changing as we live in a dynamic world. So, they should seek knowledge, to know if there is a change in any treatment or care; they should be always updated with knowledge.– Mr Christopher Kwizera
RBA: How has covid-19 pandemic affected Uganda NCD Alliance?
CK: For us, as an organization, the covid-19 has affected us in a way that most of our people, that is, the people living with NCDs are also affected and even our workers have been out of the office which has increased the cost of operations. So, when the lockdown extended here, the lockdown, the transport and people with NCDs living in the villages developed complications and we couldn’t assist them and couldn’t schedule for meetings. So, it was a challenge to us. And number two is that, we lost some people who have died especially those who were partners with the organization because of their complications. And when you look at the statistics from the Ministry of Health, over 80 percent of the people who died from covid-19 had all been living with chronic illness and that has affected us as an alliance advocating for people living with NCDs. And in another way, it has affected us is that, some of our partners especially our supporters had challenges with covid-19 which led to the reduction of funds inflow. Of course, the other one is that, by embracing the virtual way of life of doing business, online meetings, online conferences, Uganda is of course not well developed in this digital services and virtual services, so most of our people in the rural areas fall into other kinds of chronic conditions and those kinds of things, and sometimes we don’t operate at much speed as the way we want and used to. It has become challenging for us.
RBA: What are the future goals of Uganda NCD Alliance and how do you intend to achieve these goals?
CK: One of our goals is, like an organization that is aspiring to be the leader in prevention and control of NCDs, we aspire to coordinate NCD organizations in the country. And then we aspire to get all the operation set to help people living with NCDs. So, we are looking at an organization that secures the management of the people living with NCDs. Those that we have had some small support to mobilize them into two groups at all levels, where their views will inform all policies that are made for people living with NCDs. We have embarked on the mobilization of people living with NCDs and formed groups at all levels. These groups will sit and engage policymakers so that all policies and programmes that are meant for people living with NCDs are informed by views that are directly from people living with NCDs themselves.
… NCD or chronic illness is not the illness of the doctor. The doctor and health care professional should learn and work with the patient as with himself or herself, if there should be any success in the management.– Mr Christopher Kwezira
RBA: Thanks for your insight, Christopher. It has really been a pleasure having you.
CK: Great thank you so much Raphael.
Thank you for listening to the Chronic Care Matters podcast. For more insights on Chronicity and Care in African Contexts, please visit our website www.chronicitycareafrica.com and follow us on Instagram, LinkedIn and Twitter [at] Chronicity Care Africa. See you next time.
Ama de-Graft Aikins and Raphael Baffour Awuah produced the audio of this interview. Ama de-Graft Aikins and Jemima Akosua Okaikor Okai edited and adapted it for the web.