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 Labram Musah (LM).
RBA: LM is a public health advocate with interests in non-communicable diseases, tobacco and alcohol control, and prevention of road injuries and death. He is currently the National Coordinator of Ghana Non-Communicable Disease Alliance and a Secretary to the African NCDs network. Thank you for joining us, Labram.
LM: Thanks for having me, Dr Awuah
RBA: I will start by asking how you got into NCD advocacy?
LM: So, I started many years ago. I am a person living with NCDs, but I am not directly the person with the condition. By extension my parents had non-communicable diseases. So, my father had stroke and diabetes and my mother same. They all died eventually. I wouldn’t say directly because of this (NCDs), they (parents) treated this condition, but they still passed on because of these non-communicable diseases. This is an area I have passion in, way back working in tobacco control. Tobacco control is one of the major risk factors of non-communicable diseases and then alcohol. I was doing this with my own organisation called Vision for Alternative Development. Later on, I think four years ago, I led the establishment of the Ghana Non-communicable Disease Alliance and then became the National Coordinator. Currently, I am working full time on non-communicable diseases, coordinating the activities of Ghana NCD Alliance which includes activities from prevention, treatment, care, support to meaningful involvement of NCDs in policy making. Even beyond that, looking at human rights and social justice for non-communicable diseases. So that is what I can say with respect to the question that you asked.
RBA: Thank you very much, clearly your background in NCD advocacy has been a very personal one. Moving on to your current role as the national coordinator for Ghana NCD Alliance; can you tell us a bit about Ghana NCD Alliance, regarding when it was established, what it does and how the organisation’s goals relate to chronicity and care in Africa?
LM: The Ghana NCD Alliance was formed in 2017, so it is pretty much young. And its vision is to create a healthy Ghana free from non-communicable diseases. It has a very strong mission to be the leading organisation contributing to the reduction in death and disabilities through health promotion and proper health communication and looking at health strengthening and also improving the quality of lives of people living with non-communicable diseases. So, Ghana NCD Alliance, one of our major works as far as non-communicable diseases are concerned is first of all to understand the issue from the perspective of people living with non-communicable diseases because we believe that without them being involved in policy or decision making or in anything that affects them directly or indirectly, we will not be able to achieve much. So first and foremost, we felt that there is the need to bring people living with non-communicable diseases across the country to the table to discuss what their issues are and what are some of the priorities that they would want to channel out there for policymakers to take cognizance of. So, we came out with the document named Ghana Advocacy Agenda for People living with non-Communicable diseases. This document is the document that is actually guiding our work and principles and whatever that we do, as far as reaching our objective is concerned. Don’t forget one of our missions is to ensure that at least we strive to ensure we attain the highest health we can for people living with non-communicable diseases. That is how come we came up with that document and that document has four thematic areas; that is prevention, treatment, care and support. It also has a provision where we mention human rights and social justice, and finally looking at meaningful involvement of people living with non-communicable diseases. This document has been guiding us since 2018 to date and that has also given us a lot of visibility among policymakers, the public and private sector, and the general public as a whole. The document actually captures almost everything we think is of importance as far as these issues of NCDs are concerned. Aside that we have been holding a lot of programmes. One major programme is building the capacity of people living with non-communicable diseases through the initiative of Global NCD Alliance which is called ‘our views our voices’ initiative. So, that is to build the capacity of people living with NCDs, to ensure that at least they will do their own advocacy. Building their capacity, strengthening them and then giving them the necessary tools in terms of resources so that they can be able to engage policymakers. Because we believe that if people living with NCDs speak of their condition when they meet the policymakers and how they feel about the system, it will actually send a signal; they speak with the passion, they speak from the experiences that they have had. Currently we have about five networks of people living with NCDs in Greater Accra, Ashanti region, Northern region, we have one in Eastern and Western-north region. So, these are groups that have been trained and they are supporting the advocacy in their respective districts and regions and sometimes even at the national level. For the national events since the inception of the Ghana NCD alliance, we have had three national high-level meeting on NCDs, we hope to hold more in coming years. Just so we continue to elevate the profile to ensure that NCDs are given the necessary attention and resources it actually deserves. That notwithstanding, we also do a lot of public awareness campaign, public forums especially at the community level to raise awareness and do screening for people living with NCDs. But with respect to how it relates to publicity, if you look at Ghana NCD Alliance in terms of the non-communicable diseases, we don’t leave any disease behind. But some of the major diseases we focus on are hypertension, diabetes, and cancer. These are the major conditions we normally come to contact with. So, like I said, for us, building capacity is one of the major things that we do especially for those who have survived from their conditions. Also, ensuring that they join the national advocacy in terms of meeting policymakers and sharing their experiences and speaking on how they think the system is working and proposing positive recommendations that will help to reduce their disease burden to a large extent.
Physical activity is one natural medicine that you can always be proud of, if only you embark on regular exercise. I don’t mean only jogging but you can walk as much as you can and dance at church.– Mr Labram Musah
RBA: What do you think are the major barriers to reducing the risk of NCDs in Ghana, given the work and activities that you have done? What are the major barriers to reducing the risk of NCDs?
LM: For the major barriers they are many. Political will is one, I always talk about that. Then I go straight to talk about the social determinants of health. So, I am looking at both commercial and social, working around tobacco control and alcohol and even on road safety, where the industry plays a very critical role in our disease condition. The leniency government has treated them (the industries) has given them more strength to continue to produce more bad products. For instance, look at tobacco which has no benefit, but it’s been promoted to a large extent. And we also look at ‘shisha’. So, the political will is one, that is actually giving them the opportunity to continue to influence policies and to promote their product. And when we come to alcohol, everybody now feels that the way to become a billionaire is to establish an alcohol factory. So, in recent times we have a lot of these factories being established in the country, and they always link it to aphrodisiacs. These are the issues, that’s why I talk about the industry and the commercial determinants of health, which I link it to political will. Then also, there is this issue of inadequate resources for non-communicable diseases, especially we have been talking about the fact that our NCD programme is under-resourced with human resource, financial resource and with technical expertise. So, there is the need to ensure that we revamp the institution and give them the necessary resources. And then, there is the issue of government not recognizing the expertise of people living with non-communicable diseases, failing to bring them on board when policies are developed to address their issues. Of course, you cannot bring medicine for a sick person, you obviously will want to hear his concerns or contributions before coming up with a policy that is coming to control what he or she does. That thing is also lacking. Then the issues of not getting the needed medication in terms of not having the most efficacious medicine to treat the disease condition that is also one particular area. The cost of treatment, which leave many people to live out of their pocket expenses, that is also an issue. We can also talk about the gap where NCD workers are not motivated enough to reach out to the masses in terms of screening to be able to do early detection or diagnosis of non-communicable diseases. Per our observation, anytime we go to the community level to embark on community sensitization and screening, at least we have 50 percent of the people who have been screened either with hypertension and they don’t know, or they are hypertensive but care less about it. So, mostly we have to do referrals for them to go to the hospital for additional care. Also, one gap is lack of education, where people resort to unapproved herbal medication which normally complicate their disease condition. The issues are many, but this is what I would like to mention for now.
RBA: What advice would you give to someone who is struggling to manage their chronic condition? You mentioned that Ghana NCD Alliance focuses on all NCDs but with specific attention to hypertension, diabetes, and cancer so what advice would you give to someone for example struggling with these three conditions.
LM: Let me correct this, we focus on all of them (NCDs) as I said earlier. But what normally come to our table mostly is what I have mentioned i.e. cancer, hypertension, diabetes. You can also mention sickle cell which we normally hear of mostly. So, what advice? Are you talking about those who have chronic conditions already? If that is the question, then I would say that they should obviously take care of themselves, and I believe in natural medicine. I will always recommend as the Ghana Advocacy Agenda for People with NCDs that we should eat our locally manufactured food. I remember I was in a forum, and I mentioned the fact that let us encourage people to eat their local foods and vegetables, but the question are the fruits and vegetables we have healthy enough? Because almost all of our fruits have been polluted with the issue of climate change and also the issue of chemicals used to spray these crops. Almost everything is damaged and even with our fruits and vegetables we have to be selective to know which one to consume because they’ve all been chemicalized and this increases cancer and other diseases to large extent. So, the issues are very key, but I encourage people to take the local foods and reduce or stop, if possible, the intake of processed foods as much as they can. Physical activity is one natural medicine that you can always be proud of, if only you embark on regular exercise. I don’t mean only jogging but you can walk as much as you can and dance at church. Then also you make sure you attend to your medication and when you go to the hospital make sure you ask questions. This is one thing that we mostly don’t do. It is no fault of ours, it is the fault of the system, the system won’t allow you to ask questions. But we encourage people to ask more question as they can when they go to the hospital. And they should report when they have any issues because every hospital has a suggestion box or administration where you can report cases of this nature. So, they should report cases when they see they are not treated fairly or not getting the needed or desired results to the administration for action to be taken. This is what I will advise them to do and also make sure they also educate people as much as they can to reduce the intake of tobacco and alcohol, to sleep and stop late eating.
RBA: What advice will you give a caregiver?
LM: For caregivers they are many, even sometimes we extend caregivers to our financial supporters. Sometimes we also look at it from friends’ perspective, friends who also contribute to their upkeep. I believe to talk about the one who is closer to the person (with NCD) most times. So, for them I will also suggest they do almost everything I mentioned for those living with NCDs. Because to a large extent they are also people living with NCDs, where sometimes they are unable to do anything. So, I will recommend same, looking at their food and ensuring they also speak up when they think the services given are not the best. I will just recommend for them (caregivers) everything recommended for those living with NCDs because I don’t see much difference between a caregiver and someone with NCD. Of course, the one who almost spends all his day and night and spend all his money and moving up and down with the person (with NCD) also feels almost the same. If it is a family member who cares for him or her it feels the same in cases when discrimination and stigmatization comes in. To that extent I will recommend the same advice to both.
RBA: You have been an NCD advocate for some time now, what lessons have you learned from doing NCD advocacy?
LM: There are a number of them (lessons) from policy, community, industry to families and staff. Let me begin by saying, there is so much silence on non-communicable diseases, that is one lesson I have learnt. We have to check that and ensure we give much education and awareness, especially with the media because there is little talk about this and even at the national level you hardly find the issues of NCDs becoming a topical issue. So that is one area we need to look at. Then also I mentioned the issues surrounding stigma which is also predominant. We also have to pay particular attention to educating our kids concerning these things at their early stage because policymakers will tell you those above the age of 25, for them sometimes we need to manage them, but those who are of age will still continue to be in a habit of contracting these diseases through smoking and doing all sort of things that will get them exposed. So, the young ones that are coming up we need to strengthen our advocacy and education around that. Especially what they consume in schools. Because we need to protect our younger generation who are coming up so that at least we have the benefit of reducing health care cost. This is the response I would like to give.
RBA: How has the Covid-19 pandemic affected you or Ghana NCD Alliance in terms of your activities?
LM: I remember when covid-19 came we had to suspend all activities especially activities that were face-to-face, particularly during the lockdown. And when there was restriction on the number of people we can meet, to that extent our activities were affected. We also know very well that it affected the number of people we would have screened and have referred to the hospitals for further care. So, that was an issue that we feel affected our activities. People living with NCD complained a lot because they couldn’t go to the hospitals and could not go out because of fear and anxiety. Most of them were just at home. For the secretariat, it affected our network with people living with NCDs. And the cost they (people with NCDs) eventually have to bear has become more, because initially they will travel to the hospitals to take their medication but now, they have to rely on technology where they have to call (the hospital) for their medicine to be brought to them at home which comes with extra cost. First, they use the local transport, now they have to use Uber or motorbike to bring their medications to them. We even had the case where some of them reported of sharing medicines because at a point some run out of drugs and their neighbors had similar drugs, so they had to share in order to survive. Also, we had to adjust ourselves in terms of technology because we didn’t have to suspend work, we had to work from home and some of the staff had difficulties connecting over the internet. It brought a whole lot of distractions, even with our partners, connecting with them or sharing with them our progress made. We eventually had to re-organise ourselves in order to be able to fit in the new normal when covid-19 came.
Let me begin by saying, there is so much silence on non-communicable diseases, that is one lesson I have learnt. We have to check that and ensure we give much education and awareness, especially with the media because there is little talk about this and even at the national level you hardly find the issues of NCDs becoming a topical issue.– Mr Labram Musah
RBA: What are the future goals of Ghana NCD Alliance and how do you intend to achieve these goals?
LM: So, one of them is to see that meaningful involvement of people with NCD in policymaking, that is the major goal we want to see materialized. We have started some work but there hasn’t been any meeting for that particular agenda. The government has to accept that proposition and also ensure that youth with NCDs are also involve in decision making. And we will be activating Goal 17 of the SDGs, that is, partnership for development where we believe that nobody should be left behind, especially for the fact that when we are discussing issues about NCDs we should also be involved at the table. There should be cooperation in policy making. Also ensuring government commit a substantial resource to NCDs, that is one area we want to look at. Raising local revenue to support government, by increasing taxes on health commodities to finance health and development in general. We also look forward to achieving the involvement of the industry in policymaking processes, so coming up with policies and programmes, the industries should not be considered as partners in development because their products are dangerous and have no benefits but rather creating a lot of problems and leading people (especially the poor and young ones) into abject poverty. That is one area we are working hard to ensure that everything goes well. We also want to ensure the establishment of clinics because the CHPS [Community Health Planning and Services is a national mechanism to deliver essential community-based health services involving planning and service delivery with communities.] compounds are there, a model where at least we have people not necessarily professionally trained heath care officials in a house at least within a 100-metre range where the community members can just walk in and basically do screening for hypertension and blood sugar free of charge because we know these are the diseases that are creating a lot of problems. So, people can walk in, check their health status and when they are not fine, they can go to the hospital because the cost of going to the hospital to check these things is one factor that prevents people from going and also when you go to the pharmacy you have to pay for it. So, we are looking at the model where people can just walk in and just check their vitals at least which will be on regular basis free of charge. So that is why we are also calling on government to ensure that at least primary health care become free for everyone whether you are able to pay or not. Currently, it is not free because you definitely need a card before you can access health service, and you and I know that if today you announce that you want to give people free health insurance card you will see the number of people that will come to queue. It tells you that there is a huge number of people that are unable to access the national health insurance card because of the cost. Someone will say how much is it, but it is still money, so that is why there is the need for us to pool our resources together, there are people who pay the NHIS levies but don’t benefit from the card. So, there should be a system where especially those at the public sector contribute some amount for their health care. And of course, we have to buttress this one with a study. Thus, the initiative we want to start, I think we can’t do this without first having some research or study to be able to ensure we can cover all areas before we commerce. This is something we are looking forward to doing and we think it is possible, if government had been able to do free education though there are challenges with it, and I am sure as we move along, it will be better. We could also start thinking about free health care at the primary health care level so that everybody can walk in and be cared for without any difficulty. Especially with diabetes, even till date if you go to the facility you have to pay for the strips which is so disheartening to hear. Sometimes we also have to support our members in parts of the country who depend on the strips because they are unable to pay for it when they go to the hospitals. So, we have to find a way to get them stripes and the machines so that they will be able regular test their sugar level. But for how long can we do this; how sustainable is this? Government should be able to make these things available without any difficulty for them. So that’s my response to the question.
RBA: Thank you very much for your time, Labram. It has been a pleasure having you.
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.