Epigraph Vol. 23 Issue 3, Fall 2021

Epilepsy care in Zambia: “Now that we have neurologists, we will have a voice”

Reported and produced by Nancy Volkers, ILAE communications officer

Zambia's first neurology training program, launched in 2018, is shifting an entire country's perception of what epilepsy is, and how to treat it.This episode includes interviews with Deanna Saylor, program director of the post-graduate training program in neurology at the University of Zambia, and Melody Asukile, an adult neurologist with an interest in epilepsy, and one of the program's first graduates.

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Podcast Transcript: Epilepsy care in Zambia

In 2018, Zambia established its first post-graduate neurology training program, based at the University Teaching Hospital, or UTH, in the capital of Lusaka. At the time, Zambia had 17 million people – and four neurologists.

In its first three years, the neurology program has begun to transform epilepsy care in Zambia.

We spoke with Dr. Deanna Saylor, who helped to launch the program and is its current director, as well as Dr. Melody Asukile, one of the program’s first graduates.

Headshot of Deanna Saylor
Dr. Deanna Saylor (Zambia)

Dr. Deanna Saylor: The start of the program was a confluence of factors coming together at just the right time. Prior to the beginning of the program in 2018, the entirety of neurologic care in Zambia was provided by four expatriate neurologists who were primarily focused on research but doing a bit of outpatient neurology clinics. They had recognized the need for more neurology care within Zambia, and particular to train Zambian physicians to be neurologists.

In the meantime, in the US, I was becoming interested in neurology. I had been involved in research focused on HIV in Kenya and Uganda for several years and while I thought the research we were doing was really important, when we left those places, there was no one with neurology expertise to take care of patients.

I wanted to go somewhere that didn’t have any neurologists, or very few, and start a neurology training program to train local physicians in their local setting, with local resource constraints and the local neuro-epidemiology on how to diagnose and manage people.

I happened to meet Dr. Omar Siddiqi, who’s on faculty at Harvard and had been working in Zambia for 7 or 8 years, and he was really interested in getting a program started. I wrote the curriculum and he shepherded it through the University of Zambia bureaucracy to get it approved.

Then we were looking at funding, and I was lucky enough to be selected for a Fulbright fellowship from the US State Department that funded me to come to Zambia, and when we put all of that together we were able to bring the program to fruition.

Neurology encompasses a wide variety of conditions – how often do you see people with epilepsy?

Dr. Saylor: So we did an inpatient registry where we kept track of patients admitted to the inpatient service for 6 months, how they presented, and their final diagnosis.

What we found was that our most common problem is stroke—about 43% of patients admitted had stroke—but next were seizures, either primary epilepsy or symptomatic seizures, accounting for one-third of admissions.

In the outpatient setting, somewhere between 33% and 40% of visits are for epilepsy, so it’s a huge proportion of what we do.

Dr. Asukile, I’m curious about how you became interested in neurology and epilepsy, and how you got involved in the program. You are one of the program’s first graduates, correct?

Headshot of Melody Asukile
Dr. Melody Asukile (Zambia)

Dr. Melody Asukile: I was one of the first group to finish, the first cohort. I always had an interest in neurology. It stemmed from personal experiences in my life – my young sister lives with epilepsy and also later, at the end of my junior residency, I also had a neurological condition. So I’d always been asking questions about neurology.

I noticed such a gap in our country where we had no neurologists or only a very few, available to such a limited number of people. When I finished my internship, I was interested in doing neurology, but as Deanna was saying, they were still discussing and trying to establish the program, so there was no program at that point. I was looking for places to do my training and I got some scholarships to do my training in Cape Town. Just as I was winding up that training, the program here was in its second year and then COVID came. In March 2020 there was a lockdown in South Africa, and I was alone without my family, so I decided to come back to Zambia because I didn’t know how long I’d be locked down.

When I came back, I found the neurology program that had started and Deanna was mentoring, and I joined in last year and finished my training here, as part of a local program. That was good because it gave me experience with local knowledge—what we see in Zambia, how we manage patients, how we deal with limitations. So I think it was the perfect conclusion to my training.

So what would you say the one major barrier to epilepsy care is in Zambia?

Map of southern Africa highlighting the country of Zambia

Dr. Asukile: I think the one thing that hinders epilepsy diagnosis and treatment is the misconceptions that people have about what epilepsy is. There is still a very strong belief that epilepsy is not a medical illness: It’s something like you’ve been bewitched, or it’s a cultural thing, or even a psychiatric illness. These misconceptions are not only from patients and families, but medical practitioners also have these misconceptions.

For example, in Zambia for many years, our epilepsy care has been managed by psychiatrists because it’s been labeled as a mental illness. So in the background of the foundations of our health care, there’s a misunderstanding of what epilepsy is. So if we can begin the understanding that it’s a medical condition, and then have people understand it’s a neurological condition, that would be the start to better care for epilepsy in Zambia.

Dr. Saylor: I agree with Melody; that’s the primary barrier from a diagnostic perspective. There also are barriers to caring for patients once they’ve been properly diagnosed. The biggest one is a very limited supply of anti-epileptic drugs and erratic supplies even of the drugs that are supposed to be available. It’s very common – every week we see patients in clinic who have breakthrough seizures. They were well controlled on their drugs, but they’ve gone to as many as 10 pharmacies looking to refill a prescription and can’t do it. I think the erratic supplies of a very limited range of anti-epileptic drugs certainly is a big barrier to optimizing the care of patients who are appropriately diagnosed.

I know the program is relatively new, but I’m curious if either of you is seeing changes, in either awareness of epilepsy as a medical condition, patient acceptance, other changes?

Dr. Asukile: I think the program has made a huge difference. Just having local neurologists – at the moment we are all stationed in Lusaka, so the biggest difference is in Lusaka, but now patients are getting a specialists’ opinion for their care.

And the fact that this program is here, it’s created awareness that neurologists are present at UTH. For example we’ve had an EEG service for years, but in the last two years we have seen an increase in referrals to that service in the past two years, not just from hospitals in Lusaka but also from community hospitals. There is awareness now that there are specialists who can support the care of people with epilepsy.

Eighty percent of patients admitted to our hospital live on less than US$1 per day.

What I think is unique about our program is that we have teaching almost every day, and because of COVID the sessions are on Zoom, and open not only to our trainees but to anyone. So neurology education has been expanded more widely than just to our local Lusaka-UTH community. I feel like it is country wide, which is a big difference.

Dr. Saylor: I agree with Melody. We haven’t really measured it from a patient perspective, but from a health care provider perspective I like to talk about the spillover effect of having the neurology training program. We’re producing excellent clinical neurologists who take great care of patients, but in the first 5 years we expect to produce 15 neurologists—so it will take decades to produce enough neurologists to take care of the entire population. But at the same time, we’re actively teaching and revamping the undergraduate medical student neurology curriculum, and we’re interacting with all of the post-graduate students in internal medicine. So we’ve seen this general improvement in neurology knowledge among all health care practitioners.

For example, when I first arrived at UTH in 2018, I would say that carbamazepine—which is one of the two most commonly available AEDs in the public system--was prescribed as a once-daily drug at least 80% to 90% of the time, and it should be a twice-daily drug. Now, we rarely see anyone prescribing it as a once-daily drug.

I also saw that when patients came in with seizures, they had been labeled as having epilepsy and there was very rarely thought put into what was causing the seizures and whether they had a secondary cause of epilepsy that might need to be treated.

We know that secondary causes of epilepsy are very common here, and now we’re seeing that health care providers are not stopping at “This patient presented with seizures, so they have epilepsy” – they are thinking about whether neuroimaging is needed and what could be causing the seizures.

So while I ‘m very proud of the program and think it’s amazing, I think the greatest impact we’re going to have at a population level is improving the neurology knowledge of all the graduating medical students and internal medicine registrars, because they’re going to be taking care of a lot of the patients who never make it to us.

In this next section we talk about the health care system in Zambia and the affordability of health care in Zambia and the affordability of epilepsy care. (There’s a bit of background noise because we’re on a Zoom call and everyone is in their home offices.)

Dr. Asukile: There’s a public health system, and most of it is free. Generally when someone is ill, they begin at a local clinic or community hospital, and they may be referred to a higher-level hospital. UTH is the highest level, and there are some other large hospitals.

Dr. Deanna Saylor, surrounded by students, rounding on the inpatient wards.
Dr. Deanna Saylor, surrounded by students, rounding on the inpatient wards.

When the patient is referred to UTH, they are seen by a neurologist – the consultation, a patient being seen, is free. And then afterward we may write them a prescription. They take that to the pharmacy at the hospital and if the medication is available, it’s free. But if the medication is not available, the patient needs to go to a private pharmacy and purchase the medicine on their own.

The biggest challenge is that we rarely have medication in stock. Some medication is regularly available at the pharmacy, such as antihypertensive medications, but with anti-epileptic drugs we really struggle. At best, we have phenobarbital and sometimes carbamazepine. But if you want to expand your drug choices and use a different drug, the patient will have to buy the medication on their own. And many of our patients are poor. Many do not have formal employment; they may do part-time jobs for daily wage, which is the very minimum wage. So if you ask them to buy medications that might cost them $50 per month, that is likely more than they are making in a month.

We have a small number of patients who may have insurance, so they can take prescriptions to private pharmacies and insurance covers that. And there is national health insurance, which will cover most people in formal employment, but when they go to a private pharmacy there’s only a limited number of medications that are covered, and most of our anti-epileptic medications are not on the list of covered medications, so they have to pay for those on their own.

Dr. Saylor: It’s really a tale of two cities – if you have money, you can access levetiracetam, Vimpat, basically any anti-epileptic drug in the private pharmacies. You can get high quality MRIs, you can get EEGs in our lab that are high quality. There’s no limitations to your diagnostic or therapeutic options if you have money.

But 80% of patients admitted to our service in the hospital live on less than US $1 per day. That proportion is probably a little lower in our outpatient clinic, because we also see higher-income patients with formal employment, but those patients tend to be admitted to private hospitals if they have inpatient needs. But at least half of our patients in clinic live well under the poverty line, so they have to rely on the public system, which has this very limited and erratic supply of anti-epileptic drugs.

Will the neurology program help raise the profile of epilepsy to become more of a priority for the government and policy makers?

Dr. Asukile: I’m hopeful for that. The way the whole purchasing of medication happens in Zambia is that you have people who sit together and make a list of essential drugs and those drugs are purchased. At the moment, anti-epileptic drugs are prioritized at the psychiatric hospital, and not UTH. That is just a foundational issue, because the people who are planning thought that epilepsy was managed by psychiatrists, so the drugs go there.

I feel like now that we have neurologists, we will have a voice, and if we can now advocate to the goverment's leaders that epilepsy is an important condition and these medications should be prioritized, we can create a shift.

I feel like now that we have neurologists, we will have a voice, and if we can now advocate to the government’s leaders that this is an important condition and these medications should be prioritized, we could create a bit of a shift. There are still challenges, like maybe the government doesn’t have the money, but I think as a start we need to show that epilepsy should be managed at UTH by neurologists, because then they can prioritize the medications to come here first.

Secondly, we can lobby to have these medications added to the national health insurance. That’s not a complete solution, but it covers a bigger group, so if we can advocate for some of the drugs to be added to the list of covered drugs on health insurance, that would be another step to make a difference and make medication more accessible.

Dr. Saylor: I completely agree with Melody that having a voice is a first step to getting policy changes at the governmental level. When I was designing the program, I was cognizant that we were creating a new field of medicine within Zambia, and that I wanted neurologists to have the skills, knowledge and knowhow to be involved in research in Zambia and generate locally contextualized data and take that to the policymakers and say, “We don’t just *feel* that epilepsy is a problem; here are the data on how many people we see with seizures, here are the limitations to controlling their seizures.”

All of our graduates and current trainees are pursuing important foundational questions that I think will impact our ability to advocate for policy change. I think that’s another important part of the program.

Another silver lining of COVID for us has been the use of teleconferencing platforms. Melody mentioned earlier that we are using it to expand our educational outreach beyond our trainees, but we’ve also launched tele-neurology clinics. We are partnering with a private hospital in a remote part of the country to provide neurological consultations to their patients. And Melody has some fantastic ideas about expanding EEG access by putting EEGs in provincial hospitals and remotely reading them from a center in Lusaka. She also has great ideas about using the tele-neurology clinic platform to provide neurology education to non-neurologist physicians. So we’re excited to build these tele-platforms for both clinical services and training and improve neurology care that way as well.

Dr. Asukile: There are provinces in Zambia and each province is like a small state. Each has a hospital, and they are offering residents training in internal medicine. This is a new program because previously, the training was all based in Lusaka, but now it’s decentralized so you can get internal medicine specialty training at a provincial hospital.

And so because we still have very few neurologists—at the moment, only 6—I thought we could use a tele-neurology service to help training and improving knowledge of these residents in other hospitals, while at the same time providing clinical care. We would hold a clinic with a neurologist in Lusaka and a Zoom meeting like this, where the doctor and the patient will be on the call from whatever town they are in. And we can interact with the patient, and the doctor who is with the patient can get instructions on how to examine the patient, and we can discuss and make a plan together.

Because the doctor is present throughout the consultation, they learn the thought process of the neurologist and how to assess the patient, and as they learn the different aspects, we hope that if we assess them 6 months down the line, their assessments would be much better than when the program started. That’s something that’s quite exciting for us. It’s not perfect but I think it would be a step in the right direction.

Other issues I’m looking at with epilepsy is trying to understand the different types of epilepsy. Being in a tropical region, Zambia is very prone to infectious disease and neurocysticercosis is one of the main causes of focal onset epilepsy in our region. We are starting a project where we are trying to understand the burden of neurocysticercosis-associated epilepsy, as well as how to improve diagnostics in a low-resource setting—what EEG features, what CT scan features, are there any X ray supported features. We are looking for ways to improve diagnosis given the limited resources we have. And then also characterize better the types of epilepsy that someone with neurocysticercosis presents with, so we can then inform our practice, in our setting in sub-Saharan Africa, with regards to that type of epilepsy.

Photo of Dr. Deanna Saylor holding a bouquet of flowers surrounded by the first six graduates from the neurology training program at University Teaching Hospital during their graduation celebration.
The first group of graduates from the neurology training program at University Teaching Hospital during their graduation celebration, October 2020. Left to right: Mashina Chomba, Lisa Kafula Nkole, Nfwama Kawatu, Dr. Deanna Saylor, Lorraine Chishimba, Stanley Zimba and Melody Asukile.

This is a very exciting time for neurology and epilepsy care in Zambia. Any final thoughts?

Dr. Saylor: I just want to say that I couldn’t be prouder of our graduates and trainees. They are excellent clinical neurologists who function in difficult circumstances with significant limitations in diagnostic resources and the medications to treat patients. They are phenomenal, hard working, and dedicated. I tend to envision Zambia as this mecca of neurology in sub-Saharan Africa, where we are generating phenomenal experts who take phenomenal care of patients despite difficult circumstances. It might be hard for our patients to access drugs but I think it’s amazing that they can see a specialist and access free care, despite the challenges and barriers.

Dr. Asukile: I agree with Deanna – I think the future is really bright for Zambia. Deanna doesn’t give herself enough credit; she has revolutionized neurology for us in Zambia. I feel that 20 years from now there will be a big difference. I’m really excited. I already see changes. I trained as a medical student in Zambia and I was interested in neurology but now I realize I knew nothing about neurology, so it’s really exciting that we are able to teach the medical students and our fellow doctors and PIs. Similarly with epilepsy, I do think we will make great strides and see improvements in the near future.