Africa's plans for improving epilepsy care: Action Amos

Reported, edited and produced by Nancy Volkers, ILAE communications officer

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Cite this article: Volkers N. Africa's plans for improving epilepsy care: Action Amos. Epigraph 2023; 25(2): 46-51.

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ILAE spoke with Action Amos about plans and strategies for improving epilepsy care across Africa. Leveraged by the Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP), four "trendsetter" countries are taking a variety of approaches to engage governments, increase public awareness, and ensure the participation of people with epilepsy in all of their initiatives.

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Podcast Transcript

[00:00:21] ILAE: The International Global Action Plan on epilepsy and other neurological disorders was adopted in May 2022, but what does that mean for epilepsy research, advocacy, and care? What are the next steps? We spoke with the vice president of the International Bureau for Epilepsy about Africa's efforts to close the diagnosis and treatment gaps across the continent through strategy, collaboration, and persistence.

[00:00:51] Action Amos: So I am Action Amos and I'm a person with epilepsy. I am the Vice President of the International Bureau of Epilepsy responsible for Africa. And currently I'm also coordinating a project called Making Epilepsy a Health Priority which is currently running in nine countries and in 2023, we are hoping to expand the number of countries that we are supporting.

So, thanks for inviting me to this interview. I'm going to just give you an overall overview of the work that we have been doing around the Intersectoral Global Action Plan on Epilepsy and Neurological Disorders. And honestly, the work started in August and we had foundation support from BAND Foundation, which has been our main funder around IGAP advocacy.

And at that time, from August (2021) to April 2022, we were busy advocating for the adoption, advocating for the approval of the then WHA resolution 73. And we managed to mobilize at least seven governments committed to support its approval. The likelihood of it being adopted and approval was high.

So in January 2022, we secured funding for domestication of IGAP among several countries. And we targeted four countries that we called trend setter countries. And these were Kenya, Mauritius, Eswatini, and South Africa. And maybe I'll talk a bit about what each of them are currently doing or have been doing in the past month.

So that was in January. And these trendsetters, when we identified them, they started also supporting the approval, lobbying for the approval with their governments. And I'm happy to say Eswatini was very much vocal and leading in this work, as much as other countries were also doing the lobbying, so come May 22, it was then approved. So these four countries continued with their work. Now they're focusing on the domestication of this, and some of the work that has been done in these countries. Mainly setting up of IGAP task forces. And what we pushed for was that these task forces, for them to be sustainable, they needed to have inclusion of governments of the country.

So Ministers of Health in two of the countries are equally involved, which assures us the sustainability of this. And in Mauritius, the presentation was made in their parliament on IGAP supporting its adoption as well as its domestication; in Eswatini, a task force was formed. Partnerships were also formed. They identified in Eswatini key influential organizations that they would want us to work with. As you know, IGAP is much more to do with an intersectoral approach. And that means they needed to also to identify other key players, such as autism. Eswatini, who they're working with, they're working with two other universities as well as their media house is there, but their task force is composed of members from the epilepsy movement, members from the autism, and also other neurological disorders communities including non-communicable disease, also are supporting them. 

The same in South Africa. They have now a civil society task force on IGAP, which is focusing not only on IGAP, but also establishing a national plan in South Africa. A totally different scenario is in Kenya, where we have the work of the Ministry of Health, which has been devolved or decentralized to counties. Work around health issues are not managed at central level, but at county level. So there we are using a different approach, which is a bottom up (approach) where two counties have been engaged and we would want them to come up with, you know, an IGAP domestication plan as counties, which will then try to be replicated at a national level. And I'm happy to say that work is going on well and in one of the counties, another task force was also formed. 

Around September, we were privileged as IBE and other partners, including ILAE, to be part of the launch of IGAP in Africa, which was done in Ghana. And it was quite evolving to see the political will that the government of Ghana has in ensuring that IGAP is domesticated in Ghana.

 Moving on, we'll be collaborating with WHO. We are currently having some planning meetings with WHO around Ghana to see how it can domesticate IGAP and looking at which pillars will they concentrate on in terms of implementation.

So we are looking forward for Ghana to be another trend setter or model country that can showcase to the world how the implementation of IGAP can go. So that's a part of the exciting work that has been happening. So as I've already mentioned, in these four countries, we actually are pushing that there must be an intersectoral approach or collaboration among the epilepsy movement and other neurological disorders.

And we also are pushing that, you know, there have been other plans that have been done before the work that we are doing currently. So we would want to learn best practices from other movements that have been before us. You know, there are plans around HIV, TB, you know, there's work that has been done by the gender movement, so it's an opportunity for us to rope in and work with them on different aspects of work on how we can ensure that this work is domesticated. But we will not forget our key ally, which is ILAE, because, you know, we need the professionals, the experts to support this advocacy work, but also to lead in giving advice. So it would not, you know, hold water if these task forces, we do not include professionals that are, you know, working in the front in terms of ensuring that the treatment gap, the diagnosis gap, they all are responded to through IGAP. 

We have issues such as stigma, that also needs to be addressed through IGAP. But only handling one pillar will not help us. It'll be good to show that the other work is done. We have a call that we have put out for chapters within Africa to continue working around IGAP.

So the trendsetter countries are continuing. We hope to the four we might add two more. That is Ghana and Tanzania, so that they continue pushing for the domestication as well as pushing for the implementation of IGAP. 

There are indicators that this work is going to take off. But also we anticipate challenges just as any other regional or global action plan or instruments we can learn from, you know, those that travel the route before us where we still find challenges in terms of implementation, in terms of domestication. So we would really want, you know, to join hands with other players so that we keep on monitoring and tracking.

And in September there was a committee, a regional IGAP domestic committee that was formed, and this includes some legal experts. Actually, the chair of this committee is advocate Nkandu Nchindila, a lawyer by profession and working with United Nations. We have members from ILAE, we have members from other neurological disorders and they are 14 in total. The work that they have started pushing for is the establishment of an IGAP website and we anticipate that come mid-year, it'll be launched. Mainly it has also been supported by Band Foundation, and currently, about six contributors have been identified that will be contributing some stories or articles around IGAP. And this website is not only going to cater for persons with epilepsy, it is going to cater for professionals, it's going to cater for academia, so that it's a hub for the region so that people can access the work that's going to be happening. And also another interesting part of that website or knowledge hub is that it's going to have a tracking tool. So you can click on a country like Malawi and see the work that's happening around IGAP. You can click on Mozambique and see the work that's happening. So all this will call for a lot of collaboration among partners and parties, so that it becomes feasible to track IGAP implementation. Otherwise, if we do not track and monitor, member states might not actually, you know, be able to get that push that they need to ensure the implementation is happening.

[00:12:05] ILAE: So is there anything that you see as a particular challenge? Have any challenges come up that you're currently dealing with?

[00:12:18] Action Amos: Yeah. Well the, the biggest challenge is, I think the uncoordinated efforts. We have identified a few other initiatives that are about to start that I think we need to collaborate with, with other neurological disorders movements and that will be key to achieving the monitoring work itself or to evaluate the work that member states will be doing. And secondly, It's a political will. So far we have few countries that are getting excited around IGAP. As you know, epilepsy is not one of those, epilepsy and neurological disorders are not some of the attractive conditions that attract so much attention. So we need, you know, to build a good platform to ensure the dynamics around political will are looked at, so that at least we have some countries that can start to work on epilepsy to ensure that others can just copy on what others will be doing. 

So those are the key challenges that are there. And you know, funding has always been a challenge. We are relying on, you know, limited funding, just for advocates, for lobbying, but when you talk about implementation, governments will come and say, we have little budgets. So we need also to ensure that funds are made available not only by governments, but by other key players that can support. If we look back, in the 1990s, in the 2000s, you know, there was a global move around conditions. You can talk of TB, you can talk of HIV/AIDS, but for these conditions to be where they are today, it was the support that came from development partners. So it's key also that we engage development partners in this work, to ensure that they support this work and ensure that it's not only sustainable, but also it's impactful, especially to persons with epilepsy themselves. 

[00:14:31] ILAE: Great, thank you. So it sounds like there's a lot of infrastructure being built right now and systems to, to monitor and track the projects and the initiatives. Are there any specific projects or initiatives going on or that maybe have already happened, that you think will help achieve at least a couple of the pillars of what IGAP is about?

[00:15:02] Action Amos: Yeah, sure. So as IBE we have a project that we are running, supported by BAND Foundation, it's called Making Epilepsy a Health Priority in Africa. So this project is looking at several areas and one of the key areas that the project is looking at is the issue to do with capacity building. So there's need, you know, to support voices of persons with epilepsy so that they are part of the IGAP implementation. So capacity building will be done around persons with epilepsy. We would want also to, through the same project, to ensure that we engage key stakeholders such as the policymakers as well. In our earlier engagements that we have done so far, we have noted that at a higher level, there's need also to create awareness around IGAP. And not only these policymakers, but also awareness to the masses as I have said, not only building their capacity to advocate, but also creating awareness around IGAP. 

We have an advocates' toolkit that we'll be using as part of the capacity building to ensure that persons with epilepsy, they can use such tools to advocate. Another area that we also are working on is having reviews of policies. 

[00:16:49] ILAE: Yeah, I wanted to ask about the report with the 21 countries. So that was a report about legislation in those 21 countries, whether there was protective legislation. Can you talk a little bit about that? 

[00:17:05] Action Amos: Yeah, sure. The analysis that we did, you know, highlighted that out of all the 21 countries, most of the laws that are there, that you know, govern health issues in those countries, not only epilepsy and neurological disorders, most of them are archaic.

 We are talking about laws, such as like in Malawi in 1947, a mental health law that guides the implementation of epilepsy work. We're talking about a 1968 law in Tanzania that discriminates against women and says if a woman is epilepsy, they can be divorced.

So these are the kind of laws that we came across, and they're not helping persons with epilepsy. So these are some of the laws that we would want to push so that, you know, they're, they're repealed or amended and that they comply now with IGAP intentions, IGAP visions and other, you know, legal instruments such as the UN and WHO instruments.

[00:18:15] ILAE: Yeah, that's a really good point because I think a lot of people who are familiar with IGAP look at it as focusing on capacity building and healthcare, improving awareness and things like that, and they don't think about the fact that there are discriminatory laws that already exist that need to be addressed as well, because otherwise people with epilepsy will not get the equal care that they deserve. 

[00:18:46] Action Amos: That's correct. You know, you can come up with a global action plan, but when you come at a national level, you have a constitution that is discriminating or stigmatizing, you know, the priority is not the Global Action Plan, because the Global Action Plan on its own is not binding. It's not a binding document until it becomes a law of a country. So you have constitutions that are discriminating, they'll still, you know, take precedence over any global action plan that is there. So it's important that we also look at what are these national (policies), what's the legal framework that is there? What is it saying? 

Also, in November we are planning to have a conference. Either it'll happen in Ethiopia or in South Africa, a face-to-face where we would want to engage around IGAP. So that means a part of the capacity building will be done there. We also intend to engage with the African Union. Already we have started having interactions with them. So the African Union is willing to host us in Ethiopia to discuss about, you know, what can be done by governments to ensure that IGAP is domesticated. We also intend to engage with the pan-African Parliament, in South Africa. And already we have started putting up a, a proposal looking for support so that these engagements can be done. They can be part of our champions to advocate for the domestication and implementation when they go back to their countries. But you know, it can only be successful if, you know, organizations such as ILAE support and come on board. Having just an instrument on its own-- it's not enough to celebrate that. Yeah, we passed IGAP. Now we have this instrument, but it's actually the impact thereafter. Yes, implementation, but let it be meaningful. And one thing that we stressing so much is that we want meaningful engagement of patients with their lived experience.

So we are also going to come up with a lived experience repository so that people can also, once they're aware of what IGAP is, what is happening within their countries, you know, they'll also share stories of what's happening, not only around only their lives, but also around IGAP.