Revolutionising Epilepsy Perceptions & Care in Pakistan - Dr. Zarine Mogal, National Epilepsy Centre, Pakistan
Neurologist and epileptologist Zarine Mogal has changed the world for many affected by the epilepsies in Pakistan! She shares her incredibly impactful 27 years in diagnoses, care, and social acceptance - through her comprehensive epilepsy control program. Zarine highlights the importance of sustained epilepsy awareness with insights on measuring the impact of campaigns, the challenges faced in healthcare, and the future directions for improving epilepsy care in Pakistan. Transcription and links to Zarine are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Zarine Mogal
“The doctors are seeing more people with epilepsy. That does not mean the prevalence has increased. It is just that the mindset towards seeking treatment has changed!”
00:21 Torie Robinson
Epilepsy can have a lot to compete with - especially in some low-middle income countries where a population can still be struggling to combat things like tuberculosis, polio, and other infectious diseases. Well, that is why the determination and strength of clinicians like epileptologist Dr. Zarine Mogal is key! Today, Zarine tells us all about how she and her colleagues have reduced stigma and improved the lives of so many people affected by the epilepsies in Pakistan - by playing the long-game!
If you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so we can get more people learning about and having a better understanding of the epilepsies!
00:54 Zarine Mogal
Thank you for having me over on your podcast. I am a neurologist, I'm an epileptologist. So, I have a degree in neurology and then I did my clinical fellowship from the Westmead Hospital in Australia. So… and I have been practicing in Pakistan for the last, say, around 3 decades and I have been associated with this program that we have started, initiated since about 27 years. And, since, we've been working randomly since 1989, however, you know, like, since 2001, we have this, launched this comprehensive epilepsy control program of Pakistan, which has 2 arms: one is the awareness and the other is the management. So, the awareness part is the Epilepsy Support Pakistan, which is the full chapter of IBE, and the National Epilepsy Centre (under which, under one roof where we operate, which has been in place since 2007); here we do holistic management and especially we look into the care of the marginalised people. Because, epilepsy is a chronic disorder, and the socio-economic status does not allow them to take - rather [the] lack of awareness and the socioeconomic status to take - continuous medicines, so we support them with medicines, with holistic management, with awareness. And it is located on the premises of the main public sector hospital in Karachi (which is the port city of Pakistan), and besides the land and some utilities, everything is through individual and some concerned citizens and some corporates who help us out and through their donations.
03:02 Torie Robinson
You kind of mentioned, indirectly, stigma; which is a big…well, it's a big deal everywhere, but I think(compared to, say, the UK) is a bigger deal in Pakistan?
03:12 Zarine Mogal
So, you know, like, we had done this population-based study in 1985/87, and it was with Turkey and other, you know, like 4 countries, it was under the guidance of Professor Simon Shorvon(!), and that was the time we even did the Knowledge Attitude and Practice Study, and we had found that there was a stigma. And we looked into… that was our basis of our work on which, you know, like, we built our entire programme. So, we found out that the treatment gap was very high in the urban areas (it was about 72%/70%+), and in the rural areas, it was as high as 99%! So…
04:04 Torie Robinson
Wow.
04:05 Zarine Mogal
…we made that the basis for that. We have 3 publications in place in Epilepsia. And that was a formal basis on which our program was established. So, now after that, what we did was we first went into and we targeted creating awareness of the disorder. And first, we started with a very small message: “Epilepsy is a treatable disorder, it is not due to any supernatural causes, please go and see your doctor.”. So, when that was…
04:44 Torie Robinson
Mm-hmm.
04:45 Zarine Mogal
…drilled in - and we believe that sustained awareness is very, very helpful in decreasing the treatment gap. It's the sustained awareness. It's not celebrating a Purple Day or an International Epilepsy Day, every day has to be an epilepsy awareness day. So, with our sustained awareness programs, we created these indigenous programs. We started taking baby steps and then went to big formulations. And now, finally… you know, like, and we kept it very flexible and open-ended - because programs that come with financial aid and all, they are very closed-ended; they have this time limit and after the time limit is over, what happens? They are back to square 1. There's nobody to fund them. There's nobody to... So, we try to instill into them that we are helping you out, but you have to help yourself. And if you get treated you are good to go. And so, we have spread our message all over Pakistan through various programs and the details of which you will find in our paper that has been published in Epilepsy and Behavior.
So, after that, the final stage that we came in was we have prepared a small, less than 1 minute documentary which we…
06:16 Torie Robinson
Ooo!
06:16 Zarine Mogal
…air on the satellite regional television channels. It is a paid telecast. When we had the resources and the things were cheaper, we used to have it twice a day, every day for 3 months.
06:31 Torie Robinson
Wow!
06:31 Zarine Mogal
So, now it has gone to a once a month cycle and as and when, but the small, small awareness activities; they keep on going, and so, we believe that to decrease the treatment gap, one needs to create sustained awareness…
06:49 Torie Robinson
I just have to come in here. I love your angle on this, because for instance, when it's Purple Day, I'll say, like, “Every day is Purple Day” or “Every day is International Epilepsy Day.”! It doesn't stop, right? I think we need to become more like mental health where I'm not sure what it's like in Pakistan, but over here, like we're always talking about mental health, which is great, right? But we need to be doing the same with epilepsy. The symptoms, the causes - they don't disappear overnight! They don't appear just twice a year on these awareness days!
07:22 Zarine Mogal
And Torie, I'll tell you one thing, you know, like, we have had these wonderful, you know, like, experiences, and we say that the marginalised ones, the uneducated people, they are the ones who have come out of the shadows! The doctors are seeing more patients in their clinics and they are coming out, and you know, like, for the local terminology for epilepsy is mirgi and they come out and saying that means “My child has epilepsy and we are seeking treatment.”. So, that is a big thing, it is a big shift. People who did not want to utter that word are coming out and some of our neurologists, you know, like, they claim that the prevalence of epilepsy has gone up! We did a second population-based study in 2006 after 5 years of our sustained awareness. The prevalence remained the same. The only difference is the awareness that we have created; people are seeking more treatment and therefore they are coming more to the doctors, the doctors are seeing more people with epilepsy - that does not mean the prevalence has increased. It is just that the mindset towards seeking treatment has changed!
08:02 Torie Robinson
That's amazing! And I guess that's how you are measuring the effectiveness of your work, right? Seeing change in communities.
09:01 Zarine Mogal
That is one point. And what we have done is that population-based studies are very, very difficult (as you may be aware of it); so, one we did in 1985, then, after 5 years of our whole sustained awareness program, we needed to see whether, you know, like, how much have we achieved? Are we just going blindly or not? So, we repeated the population-based study, and in that same area. Unfortunately, we could not go into the rural areas because of the security reasons in the country that prevails) but we did it in the urban areas and there was a major shift! You know, like, we had expected 50%, but the treatment gap (which was 70%+), it came down to 25%!
09:54 Torie Robinson
Oh! That's amazing!
09:56 Zarine Mogal
So, that is the direct scientific method which the international bodies would like to see. Now, population-based studies cannot be done left, right, and centre, and they are very, very time consuming, they are very, you know, like hefty. So, the other method that we chose was an indirect method: we have this very renowned international body which collects data on the sales of different drugs.
10:27 Torie Robinson
Uh-huh…
10:27 Zarine Mogal
So, they have been very kind that over the years they have shared us the data and then here, you know, like, we have been seeing the sales of anti-seizure medications. We have been measuring their increase in the growth from our baseline in… since 2001 to now, and the compound average growth as of 2024 is 17.5%! So, that is a major shift without…
11:03 Torie Robinson
Wow.
11:03 Zarine Mogal
…any changes - only and only sustained awareness has helped us.
11:10 Torie Robinson
Awareness, I think, and understanding, which challenges the stigma and enables people to come forward to seek help. What would you say then the next 5 to 10 years holds for what you're doing? I assume, well, we know you're on the right track, so, I guess you're gonna keep doing the same thing? What do you expect to happen?
11:28 Zarine Mogal
We have very few neurologists. We have a team of about, say, 450, but 450 people for 2.2 million people with epilepsy... 1% of our population has epilepsy. So, that is not enough. So, we are training the general physicians, we are training the specialists, we are training the healthcare workers, and the psychiatrists who have been overlooked. There is always a professional war that is going on! We are addressing the gynecologists because the gynecologists are not aware of how to handle a person with epilepsy who comes to them and they themselves go into a panic. So, we've started with that and we'll be going around in the country and doing that this year.
For the government, epilepsy is not a priority because they have other priorities. They have not been able to combat tuberculosis, polio, other infectious diseases, disorders, and it is only and only the clinicians, till the time they take this thing in their hands, nothing is going to happen.
12:47 Torie Robinson
Zarine’s passion and persistence, and dedication are inspiring to us all. Learn more about Zarine’s and her work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of this entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so we can get more people learning about and having a better understanding of the epilepsies, around the world!
See you next week!
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Dr Zarine Ratansha Mogal is a neurologist/epileptologist working selflessly for more than 25 years towards holistic management of 2.2 million people with epilepsy, especially the poor in Pakistan. She has been awarded International League Against Epilepsy-Asian and Oceania’s highest, Outstanding Achievement Epilepsy Award in recognition of her extraordinary contributions towards Epilepsy Care. She is the first recipient of Epilepsy Society of Australia’s regional scholarship for Fellowship in Clinical Epileptology.
The award citation by Prof. John Dunne, President, ILAE-Asia Oceania summarizes her huge body of work well.
“… She is a visionary leader and has devoted herself to the epilepsy movement in Pakistan. She is President, Epilepsy Association of Pakistan (ILAE-Chapter) and Secretary, Epilepsy Support Pakistan (IBE-Chapter). She co-heads the NGO-run National Epilepsy Centre in Karachi which is the only designated epilepsy care centre in Pakistan, run by volunteers. Zarine wears many hats to provide integrated holistic services to people with epilepsy especially the poor. She is not only a consultant treating patients and trained neurophysiologist reporting electroencephalograms but is an excellent teacher, clinical researcher, a meticulous organizer of educational and awareness activities, an active fundraiser for the centre required for provision of near-free treatment with medicines. She is presently setting up the first ever prolonged video EEG/telemetry lab which will be the stepping stone towards future epilepsy surgery, for which she is actively seeking donations. Zarine takes care of epilepsy patients from far off cities, towns and border villages through e-communication and is planning to set up regular tele-clinics for them. She personally handles the social media due to lack of resources, financial and human. Her contribution towards public awareness and fighting epilepsy stigma has been enormous. She visits the country’s remotest areas for awareness activities, patient management and training of doctors despite the difficulties imposed by the traditional patriarchal society in which the role of women can be very restricted. …”
In 2021-22 Zarine has been nominated Member-ILAE Education Council, Executive Board Member-ILAE-Asia Oceania, Member-ILAE-AO Asian Epilepsy Academy, Member-ILAE’s Standards & Best Practices (S&BP) and Co-Chair, S&BP Council’s Implementation & Education Task Force. Her mentor Prof. Hasan Aziz states that it is really creditable for someone who lives and works in a low-income country like Pakistan to achieve these international posts.
Zarine works for the Govt. of Sindh Health Department, for three decades. She consciously chose to work at a secondary care hospital to facilitate the poor people. Here she has set up and running the neurology and neurophysiology unit, the first ever in a public secondary care hospital
Zarine is a multi-tasker with various interest. Kalaam-i-Aarifaan – Poetries of Mystics & Sufis is her unique non-medical project in which she has transliterated and translated poetries to English.
Zarine has always introduced herself to the international epilepsy community as a proud Zoroastrian Pakistani, having pleasantly changed their perspective on women and minorities in Pakistan.
Zarine has been serving Karachi Zarthosti Banoo Mandal’s medical subcommittee for over two and a half decades.
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LinkedIn zarine-m
ILAE Ambassador for Epilepsy Award 2023
National Epilepsy Centre nationalepilepsycentre.org.pk/our-team-2
Zasha zarine-moga
ResearchGate Epilepsy treatment gap and stigma reduction in Pakistan: A tested public awareness model