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, care for ourselves and for loved ones who live with chronic diseases, and to support caregivers.
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 Leonard Baatiema (LB) speaks with Dr. Neusa Jessen (NJ). Dr Neusa Jessen, is a cardiologist from Maputo, Mozambique. She recently completed her PhD in public health at the University of Porto in Portugal. She is a founding member of the Mozambique NCDs Alliance, a local chapter of the Global NCDs Alliance. Dr. Neusa Jessen is also the founding member from the Mozambican Heart Association. In 2017, she was named as one of the emerging leaders of the World Heart Federation Emerging Leaders Programme on cardiovascular implementation research. She also won the first prize for the 2017 Nature Reviews Cardiology Research Awards. She has been in the forefront of NCDs research, advocacy and grassroots activities to raise awareness and promote quality care for people living with NCDs.
LB: This project is called the Chronicity and Care in African Context project. This project is led by Prof Ama de-Graft Aikins as part of her British Academy Global Health professorship award. The project blends research and public engagement to explore how our understanding of social responses to chronic diseases, can shape context-specific interventions for African communities on the continent and in the diaspora.
NJ: Okay. No problem
LB: Yes. So let me go straight into the series of questions that I have for you today. So, I will like to know how you got involved in NCD advocacy. How did it all start?
NJ: Thank you. So, I think that my involvement in the NCD advocacy started soon after I finished medical school because I was sent to work in a remote district in the north of my country for two years. We were only two physicians there so I had to do a bit of everything, including working with community health workers to convey prevention measures to the population. So well, this is where my interest in public health started. This spark has grown since then because as you know, I’m working at a public hospital in a low-income country and every day, I experience the struggles of the population to access healthcare, particularly care for chronic conditions. But my first active involvement in advocacy, I mean, doing it and being aware of what I was doing was being with the American Heart Association. I was still a resident in cardiology at that time when I started participating in activities of the association. Then five years ago, we were invited to a workshop training organized by the Global NCD Alliance. There, I started to understand the power of what we could achieve if we joined forces with other associations working in this field and with the same objectives.
LB: Okay. Can you tell me a bit more about your organization, the hospital that you work in, like when it was established, what it does, especially within the context of NCDs, what exactly is the focus and how this is related to NCD work in the African context?
NJ: So, as I said, I work at the Maputo Center Hospital, which is a major hospital and a public hospital. It is a reference hospital in the entire country and I am a cardiologist, but my advocacy activities are more related to the American Heart Association. This association was founded in 2008 and it’s a non-profit that depends on volunteers to fulfill its activities. We do not have people working for the association. It was founded because we felt that we needed to improve the attention that was being given to cardiovascular diseases in our country and to include the population in this problem also. So, the association works on advocacy related to cardiovascular disease and particularly hypertension. Every year, before COVID-19, we used to organize activities for the world on that day, including marches to raise the awareness of the population regarding cardiovascular diseases, and fairs, where people could measure their blood pressure and their glycemia. We work with a gym and they would send an instructor to give free lessons/exercise on the local TV, which is broadcasted live. We also do research to raise evidence that can guide interventions for the prevention of cardiovascular diseases. In this regard, since 2017, we got involved in a global campaign called MMM. Which is May Measurement Month.
LB: Okay. Tell me more about it.
NJ: It is run by the International Society of Hypertension and this is a very important activity done to raise awareness of the population using the data from our country. We know that hypertension is a very big problem here. We have a high prevalence of about 39% of the adults [AdGA4] and we know the data we have is inadequate. So, this is an important campaign to increase the number of diagnosed hypertensives. It’s also an opportunity to educate not only the hypertensives but the community. Here, we have published the results from the first campaign organized in 2017, and that was the largest BP screening campaign ever undertaken here in Mozambique. Also, we used this as a tool to advocate for more attention from the government. In the course of the year, we participated in several TV shows, also for advocacy. We also try to take care of most of the aspects of chronicity when we do these activities. And also, by the end of 2018, this association, the Mozambican Heart Association called AMOCOR, joined forces with us and the other associations fighting against NCDs in our country. We created the Mozambique NCD Alliance with the objective to guide collective actions in line with the existing plans from the government because we have this common goal, that is the prevention and control of NCDs, and we know that these diseases, especially the most frequent ones, share risk factors. We have support from the Mozambique Minister of Health and the major agency here in Mozambique and of course, the Global NCD Alliance. It has been crucial for us to start this project and even now we are still getting help from them. We apply for some grants that they have so that we can embark on our activities as a non-profit.
LB: Okay, that is very good. It appears your team is doing such a wonderful job in Mozambique. So that brings me to the next question. I know you have touched on some aspects of the collaboration that you currently have with the government, but I just want us to be more specific. On the initiatives, can you mention some specific activities that you have been doing in collaboration or in partnership with the government within the context of NCDs?
NJ: Yes, the Mozambican Heart Association bases our activities on available scientific evidence. As I said, hypertension here is the main risk factor for adult heart disease in Mozambique. This evidence was from a study that was conducted by the Ministry of Health in conjunction with us and we have data from the study which highlights the prevalence of hypertension in our population, and this data includes the young people and so our alliance with the other associations, also focuses on the main problems of public health in our country and we are now defining activities for the Alliance, but this is aligned with government plans. So, before we launched the Alliance, we had some meetings with the head of the NCD program in the Ministry of Health and the NCD representative at our local major agency to also learn about their existing plans and how the Alliance would best act to fill the existing gaps. So, what we try to do is not to overlap the existing activities but to fill them, and do what we can in order to involve bring the population and the community in these activities. So, we decided to focus on the advocacy for the prevention of the major risk factors, especially. At the moment, we are designing the plan for the next five years for the Alliance and we intend to align with the activities and programs of the government.
LB: Okay that is great but beyond these specific activities, do you also get involved in developing policy briefs, such as position papers or concept papers, that are relevant to NCD work in the country?
NJ: Yeah. So, as I said, that’s our plan. We really want to participate more and get involved with their plans but the Alliance was just starting when the COVID-19 outbreak caused a halt in our activities and so we could not make much progress but that is what we want to do. We want to participate and get the people with those diseases to also be involved in making the decisions that affect them. We hope that we can do that once the Alliance is recognized because that’s another problem here. We need to be recognized, I mean, be legalized but before that, the Alliance will need to stay in associations that are already legalized and it takes some time and a lot of money to get on board these associations. Until now, we, as an Alliance, are working more with the activities of each of the other like-minded associations.
LB: Okay. All right. So, my next question is trying to look at some of the challenges that you have faced in your line of work. I know that, based on your expertise as a specialist in cardiology, you have been at the forefront of supporting people with NCDs, but let’s look at some of the major barriers that you face in the effort to reduce people’s risk of NCD in your country.
NJ: So, there are several barriers to reducing the risks of NCD. Here, I will talk about my country in particular, of course, Mozambique. First, I would say there are low levels of education in the population. Although primary education is free and compulsory, less than enough of the population finish primary school, and overall, the literacy rate is low. It’s around 47% and female is around 28%. Among those that finish primary school education, are those without basic reading and writing skills. As such, health literacy is also very low in the population. It’s a huge challenge to convey certain health messages to the population and bypass certain beliefs and taboos. This is one of the challenges that we have to work on. We have to go to the population and find the best ways of conveying these messages to them. Another barrier is poverty. I would say urban poor are an important mounting problem because the NCDs are increasing fast in urban areas and these are people who used to live in rural areas but moved to the cities. They abruptly changed their lifestyles and habits. Some get jobs and become less active, more stressed and adopt unhealthy diets as in the cities, fruit and vegetables are more expensive. Many others do not even get jobs and they starve on the streets. It is really difficult to convey a message such as adopting healthier lifestyles to those who are going through so many difficulties and so eat what they can afford on the streets. Another huge challenge in Mozambique is the health system, such as in other low-income countries. It was not built to manage NCDs. It is not adequately equipped nor staffed to manage chronic diseases. The health workers are not trained to prevent diseases, but only to diagnose and treat them. Although NCDs are now recognized here and more important steps have been made such as the creation of the NCD department at the ministry of health and also the design of a financial program to aid in the prevention and control of diseases, the budget that is allocated to the NCD department is very low, which will of course, make the implementation of plans difficult. Also, the capacity to influence tobacco and alcohol use and engagement in physical activities lies as a responsibility of the health sectors and the behaviors of the people and the powerful people in the economic space. Hence the so-called all-of-government or all-of-society approach is not easy to implement here also. Another huge one, I think, is the scarcity of local scientific evidence to guide effective interventions because there are several studies that have been conducted in Sub-Saharan Africa that suggest that the risk factors, clinical symptoms, and the outcomes of specific NCDs are significantly different as compared to the Western cohorts and so, I believe that we need research to render more effective evidence-based intervention strategies for prevention and control of NCDs here.
LB: So, touching on the funding bit, I know you made a point about the fact that funding allocation from the government to support NCD work is very limited and insufficient. Is it the case that largely the funding that you have to do your work – the advocacy, and community mobilization, all come from external supports or donor partners?
NJ: For us, we are working as a non-governmental organization. Yes, we do try to find external funds such as Global NCD Alliance. For the Ministry of Health, I know that for NCD in particular, there are not many investments from external sources as people are more interested in funding infectious diseases projects, especially Human Immunodeficiency Syndrome (HIV), Tuberculosis (TB), and malaria. So, it’s more of the government paying for this program. So the budget is very low.
LB: Okay. Let’s take another look at the risk factors of NCDs. Are there some unique challenges when it comes to dealing with the youth and NCDs?
NJ: So yeah, it’s very difficult here also because people often think that these diseases are for older people. Even the population does not believe that young people can get these diseases. For example, we have young people with hypertension. In a study report of people from ages 15 to 63 years, from ages 15 to 24 years, we found the prevalence of hypertension of around 13%, which is very high and we do see patients in these age ranges but it’s very difficult to put them on treatment and to keep them as they do not have support from their families. Actually, we have to work more with them and involve them in our activities also. So, they can make the change because these risk factors also affect young people and if they start showing symptoms very early, they also get these diseases.
LB: Okay, great. That’s good to know. So, in the light of what is happening in Mozambique, what advice would you give to someone who is struggling to manage their chronic conditions? So, look at the different NCDs that you’ve encountered in your line of work, what specific advice will you give to people with cardio-related conditions, people with diabetes, people with cancer etc.?
NJ: So, the first advice I would give is for people to accept their condition. That’s something that often is difficult for people to do because it’s a chronic condition and they are going to live with it. So, own your disease, know it, be strong and persistent . I’m very aware of how difficult it is to deal with these diseases. I also know that most of those that follow the recommendations (I’m talking more about my side than my work on cardiovascular diseases) given to them by their health providers are able to live longer, quality lives. Most of them also need to know their rights and look for help, not just sit in and wait for it. There are several associations and groups of patients that can also help each other.
LB: So, do you have any case study on this that you would like to share, based on your work?
NJ: Yeah. I can share my experience with a young woman living with rheumatic heart disease. Okay. She was admitted to the hospital in a very bad state and she didn’t have faith. She was really down and she was under 20, around 18, I think. She was operated on and had heart surgery when she got there. Now, she’s an advocate and she created a WhatsApp group for others with the same disease. She is now a mother and has helped lots of people. Because she knows where to find all the medicines, she keeps in contact with us. I think it’s a very nice story because she does keep in contact with the other young people with the same disease.
LB: Oh, okay. That’s brilliant. Now let us talk about caregivers. People living with NCDs journey with caregivers, which could be a husband, a wife, a brother, children, etc. and they play a very important role in this journey. I’m just wondering, what you often tell caregivers. What advice do you give caregivers?
NJ: Okay. So, when we talk about caregivers, they take care of the patient. I think they are very important. I would say that they have to, first, listen to the patient and take care, not just of the disease, but of that person. Be patient with them because it’s really not easy. They should take care of themselves too because caregivers take care of the patient but sometimes forget about themselves.
LB: Okay. And this applies to all NCD-related caregivers? For instance, caregivers for stroke, hypertensive or cancer patients who may have different and unique needs and support areas that we may want to give them?
LB: What lessons have you learned from doing NCD advocacy? What would you like to share for those who are thinking of going into NCD advocacy, for those who have just started the advocacy, for those who are in it and will hopefully hear your story? Also, policy-wise or with regards to the political aspect which involves working with government, the financing aspect, collaboration with partners and issues of gender, what are some lessons that you would like to share with us?
NJ: Okay. So first I would like to say that NCD advocacy is a great way of keeping myself up and I’ve learned and I still learn a lot from it. Since I got involved in NCD advocacy, I had to review government documents, think about their implications and do many other things. So, I’ve learned, for example, that for our NCD society movement is still very weak and not enough for it to be recognized and meaningfully involved in these government decisions. As I said, this is one thing that we have to still work on as people living with NCDs are usually not well informed of their condition but they usually are very interested in taking part in programs that addresses theirs. So, what we need to do is to sensitize, build their capacity and guide them. NCD support groups may contribute a lot to advocacy on issues that affect them. Thus, they act as vehicles of information and a bridge to families and communities regarding these diseases. So, to be successful in our advocacy efforts, we need to put the affected people at the center of our thinking and before doing any intervention, we need to listen to them, learn their priorities and find out more adequate ways of conveying our message our actions to them. Most of the people living with NCDs are not used to being listened to and ever say their needs. So, we also need to build their capacity in constructing a stronger civil society movement that can help to accelerate the progress in preventing and controlling NCDs. This should be powered by insights from people living with NCDs, their lived experiences. Another lesson is that we shouldn’t disregard the importance of providing feedback to people living with NCDs. We must discuss our findings with them and try to find solutions with them for their problems as this will increase the likelihood of them following the recommendations. Likewise, it is important for us to assess the impact of our advocacy efforts so that we can improve our work. Also, the media should be engaged to support capacity activities as their role is fundamental to policy support for effective implementation of these interventions and conduct a meaningful advocacy effort. I have to say that collaboration at national, regional and international levels is definitely very important. But we have to be mindful of what is happening around us, be open to new ideas and work, aiming at continuous improvement in what we do. Talking about a woman, of course, I think it’s getting easier to work. We have many talents to work in our countries. At least in me, as a woman, a mother, taking care of the family, being a physician and also finding time to work with advocacy, which is, voluntary but we see the results. We see how people need us and how they benefit as a result of this work. So, it’s very nice to work with this association and I think people are accepting us now. I don’t feel any difference and I’m not treated differently because I’m a woman.
LB: Oh, okay. Yeah. That’s good to know.
NJ: Thank you.
LB: So, yeah. Thanks for the very elaborate response. We can’t conclude this interview without asking about COVID-related issues. How has COVID affected you and the work that you do?
NJ: Unfortunately, the Heart Association and the Alliance were unprepared to face this challenge of the COVID-19 and the changes that followed. All our activities in the communities suddenly stopped because we could not have face-to-face activities and we experienced some difficulties. We were not prepared for online communication. So, we had difficulty in communication even with the members of the Alliance. So, right now we are joining forces to get more organized and so COVID-19 also brought about something good, which is, that we have learned to work in other ways.
LB: Okay. I don’t think anybody is praying for another COVID-19 to strike, not in our generation and definitely not in the generation to follow after us. So how about your patients, during the COVID-19 pandemic, how were you engaging them? How were they coming around for consultation? Did you have to adapt to new ways of doing things? Did you have to rearrange the provision of care and all of that? How things were done?
NJ: My work with chronic diseases could not stop completely but we had to reduce the number of daily consultations. So, that influenced the number of patients that we could see and we had to take all the necessary preventive measures. We did feel the change in OPD (out-patient department) consultations as many patients were afraid of coming so they skipped some appointments that were unfortunate but things are now getting back to normal.
LB: With time, at least things are getting better now, I guess?
NJ: Yes, we don’t have the complete sense of the influence of the COVID-19 pandemic on the patients as we didn’t do any study to see but we know that it affected the people as they were not coming back anymore because they probably died at home.
LB: Yeah, of course. That was the unfortunate bit of it. So gradually, we are wrapping up the interview. My next question to you is about your future goals. What are some of the future goals for your organization going forward? Post-COVID-19, what are you looking forward to doing? What are you targeting? What are some of the plans that you have and how do you intend to achieve these goals? I know COVID has changed so many things and I’m just wondering whether that has also changed your future goals, what you currently have and how you intend to achieve them.
NJ: Okay. So, the next step is to implement concrete actions for the next five years. So, the first thing is to improve the communication between member associations and the public. In this regard, we recently designed a project to strengthen our infrastructure, the government, and also the sustainability of our Alliance. We have one small grant from the Global NCD Alliance and it’s called the solidarity fund. For now, our priority is to get very well organized and have concrete plans and start working on them. In the medium term, I would say, we need to engage more associations so that we can get the Alliance legalized for full operations in the country. As an Alliance, we need to increase and broaden our activities to reach other provinces because we have been working more in the capital, here in Maputo, for this task and we will use social media to reach the public. We have created our web pages, we will use Facebook, WhatsApp and the other social media platforms in the long term in order to become an important organization in the fight against NCDs in our country and contribute to shaping the attention that is given to prevent NCDs and care for those that are already faced with NCDs. So, we will need to fortify our work to be in line with the plans by the Minister of Health and the work of the organizations that are already fighting for the same objectives. Right now, it is the Heart Association that we are currently working with to conduct the MMM, which is happening next month. As I said, it is the May Measurement Month, dedicated to hypertension. We will be doing activities in the communities to raise awareness.
LB: All right. Once again, thank you so much. We have come to the end of the interview so thank you so much for your time.
NJ: Thank you so much.
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 Leonard Baatiema produced the audio of this interview. Ama de-Graft Aikins and Jemima Akosua Okaikor Okai edited and adapted it for the web.