Bringing epilepsy out of the shadows: How far have we come? Dr. Ted Reynolds

Reported by Dr. Edward Bertram | Edited and produced by Nancy Volkers

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Cite this article: Bertram EH. Bringing epilepsy out of the shadows: How far have we come? Dr. Ted Reynolds Epigraph 2024; 26(1): 33-39.

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In the 1990s, there was more funding for leprosy research in the United Kingdom than for epilepsy research. It was around that time that Dr. Edward (Ted) Reynolds, then president of ILAE, recognized that as a global problem, epilepsy required global solutions. His idea blossomed into the Global Campaign Against Epilepsy and established a partnership among ILAE, the World Health Organization, and the International Bureau for Epilepsy that continues to this day.

 

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Podcast Transcript

Dr. Ed Bertram: Launched in 1997, the Global Campaign Against Epilepsy aimed to improve the lives of people with epilepsy worldwide. Dr. Edward Reynolds was president of the International League Against Epilepsy then, and he helped develop the campaign in cooperation with the International Bureau for Epilepsy and the World Health Organization.

Dr. Reynolds’ efforts were essential to the project, which brought epilepsy out of the shadows and had positive results in many countries.

Dr. Ted Reynolds: Well, my name is Edward Reynolds, often called Ted by my colleagues, but not by my family.

I trained in neurology at the National Hospital Queen's Square in the 1960s. I spent a year at Yale in 1970, and I returned to be a consultant neurologist at King's College Hospital and the Maudsley Hospital in London, with a special interest in epilepsy. And later in that career, I developed a clinical center for epilepsy and an academic institute for epilepsy at King's College, London, and I got involved with the League (ILAE) quite early on as a member of the commission on anti-epileptic drugs in 1974. I became vice president of the ILAE in 1989 and president in 1993.

Dr. Ed Bertram: So to let everyone get a better idea, when it was started, what was the global campaign that you got started? What was its intention?

Dr. Ted Reynolds: Well, when I became president of the League, I was already aware that epilepsy was a global problem. There were differences in incidence in some countries due to brain diseases, infectious diseases, but it was an amazingly global problem. It was also a very neglected and stigmatized problem.

It occurred to me while I was in the early days of my presidency, because the ILAE is affiliated, like the [International Bureau for Epilepsy, IBE], to the World Health Organization, and they meet, the WHO and presidents of all the [non-governmental organizations, NGOs] meet in December every year. And I went in 1993, 94, and it seemed to me this was not a terribly constructive meeting. They'd ask us what we were doing, we'd ask them what they were doing, and they'd ask us for information about this or that disease. And it occurred to me, really, we could do better than this. It occurred to me we could form a partnership and that's what I tried to sell to the WHO and to the IBE over the course of 1995, 96. And everybody agreed to it, which was great.

Dr. Ed Bertram: What were some of the driving factors that really brought you to this, that we have to work together on this problem?

Dr. Ted Reynolds: I suppose the first one was that it was a global problem that needed global attention and could be attacked globally. I didn't know of any other disease that was more globally distributed, and it didn't, well, no social class, no age, no geographical boundaries. And it really required a major partnership and initiative of these three organizations.

What we identified as the major objectives of the global campaign were to raise awareness, to improve education and training, to identify the needs of people with epilepsy, to dispel myths and misunderstandings, and to encourage every Department of Health in different countries to do their own thing for epilepsy. Those were the objectives. Quite ambitious, but it required a lot of effort over a long time to get everybody on board.

There were some reservations, especially in the Bureau, about getting involved with the World Health Organization, which is a fairly unfathomable, giant organization and there was a slight worry that there might be financial demands on the Bureau, which was less well-endowed than the League.

Others were quite worried about launching a campaign for brain disorders under the Division of Mental Health. There were a lot of issues about why are neurological NGOs (non-governmental organizations) affiliated to the Division of Mental Health in WHO. Although it had a unit of neuroscience, which is what we were all attached to, neuroscience came under the umbrella of mental health. And I remember a lot of the other neurological NGOs at that time were very worried but in fact, I was not too bothered about that because I always saw epilepsy as a bridge between neurology and psychiatry. And also as (neurosurgeon Wilder) Penfield said, it was a window on the brain. So these were some of the obstacles, but it didn't take too much effort to get around them.

Dr. Ed Bertram: When you got started, what was the situation for people with epilepsy?

Dr. Ted Reynolds: At the time with regard to epilepsy, every country was a developing country. I mean, I was aware of how neglected epilepsy was in my own country. I had set up a charity, the Fund for Epilepsy, with a view of establishing a clinical center. You see, there were only five epilepsy clinics—In 1990, there were five epilepsy clinics in the whole country. This is UK now. And in my part of the world, there were eight diabetic clinics, just in the southeast of England.

And I set up the first regional epilepsy clinic in the country at King's. And of course, there was a great deal of misunderstanding prejudice and stigma, which we're all very familiar with, but this was in my own country, and I got to realize as I joined the League and became more globally aware that, of course, in developing countries, they weren't getting any treatment at all in about two-thirds [of cases].

Quite a few studies at that time had shown that the treatment gap, that is, that those people with epilepsy who were not getting any treatment, not even phenobarbital, varied between about 60 and 98 percent, especially in rural communities. And, you know, here was a treatable brain disease not getting treated. Not well treated in my own country, there weren't services, so the need for greater global attention to epilepsy was apparent in my own country, in developed countries, and much more so in developing countries.

Dr. Ed Bertram: One of the issues I think you touched on briefly is that epilepsy was a stigmatized disease and even today people work to hide the fact that they have epilepsy. Back when you first started this, how much was the image of epilepsy and people who have epilepsy a barrier to people seeking help?

Dr. Ted Reynolds: Well, it was still very widespread. I can illustrate this with some statistics, which astonished me. We set up a charity, the Fund for Epilepsy, in the UK, and quoting Graham Greene, who's a distinguished author, who was diagnosed with epilepsy, and he wrote about that, and I've written a paper about his epilepsy, which he probably didn't have, it was a misdiagnosis.

But he said, this was back in the 1920s and 30s, that the three great unmentionables were cancer, leprosy, and epilepsy. And to a large extent that was true in the 1990s, less so for cancer. And I discovered that whereas one or two hundred million pounds are being raised for cancer, more money was being raised for leprosy in my country than for epilepsy, and we didn't have any leprosy at all in the United Kingdom, yet we could raise more money for it than for epilepsy. It's really at the bottom of the league, and this illustrated the hidden nature.

Now people, public figures, didn't want to reveal their epilepsy, and I knew that because I knew one or two public figures, so that was an example in my own country, but of course it's even worse in developing countries where there is misunderstanding and ideas of possession and punishment.

I've always taken an interest in the history of epilepsy, and I had the privilege of working with a Babylonian scholar in Cambridge, son of a famous neurologist who you'll have heard of, Kenny Wilson, of Wilson's disease. Well, I worked with his son on Babylonian neurology. I began with Babylonian epilepsy. In the British Museum there is a tablet, a Babylonian tablet, describing all the different seizure types, or most of them, that we recognize today.

So, this was fascinating, but of course it was all due to possession in those days, and remained so for centuries. This is very deeply rooted, the stigma and prejudice and misunderstanding, very deeply rooted, and that was something that needed global attention as well.

Dr. Ed Bertram: It appears that there has been some effect from the campaign on the image of epilepsy and the issue of stigma. What kind of changes have you seen in terms of people's perception of epilepsy in different parts of the world?

Dr. Ted Reynolds: Well, I've seen a great improvement in my own country and in Western countries. I think I would defer to each particular country as to what their view is as to how epilepsy is coming out of the shadows in their particular countries. The chapters of the League and the Bureau got behind this campaign fairly early on, and it was always going to be that the global initiative would be supporting individual chapters and organizations to do the best they could within their own country with their own limited resources.

And that's why, in fact, we set up demonstration projects in some countries, early on in the campaign. And China was a very good example of this. China set about, first of all, using local public health workers to identify epilepsy, and then bringing treatment to them with phenobarbital. All I can say is that in those countries that I've had some contact with in recent years, that's in China, in Russia, that it's quite clear that this has helped to raise and dispel myths and misunderstandings as well as bring treatment.

Obviously, it's easier to measure how many people are getting treatment now than were before. It's not so easy to measure the emergence out of the shadows. I'm assured by my contacts in some countries that this is what's happening. I don't know how you measure that.

Dr. Ed Bertram: I remember talking with Shichuo Li about the China project, which was a very important project in the very early stages of this. They worked really hard and people were far more willing, after they've done these educational programs in various provinces, that people were much more comfortable talking about it and getting treatment. Was that your impression when the first stages of the demonstration project in China were completed?

Dr. Ted Reynolds: I think it's very difficult to dispel deeply held religious views or views about punishment or infectious diseases, but it's education, isn't it? It's all about educating.

And there's been a tremendous growth in education and the League has taken the lead in that. We've had academies of epilepsy, and I think the growth of education in developing countries through the League and the Bureau has been very worthwhile. And the greater the education, the more they accept the need to treat the disorder, because actually underlying it all, there is some electrical dysfunction in the brain, and it's not possession, and it's not infectious. It's not due to the influence of ancestors. The more it comes out of the shadows.

Dr. Ed Bertram: You talked about how early on when we got started there were really few resources for people even in the UK. And now we're 25 years on, how has that changed?

Dr. Ted Reynolds: Oh, it's changed enormously. I've lost track of the number of epilepsy services and clinics there are in the United Kingdom. I'm very retired and out of touch, but I do know there will be an epilepsy clinic in every region of the country, and not just for adults, but for children. Epilepsy surgery centers now are in every medical school. We've even now got a national institute of epileptology. What I began with my colleagues at King's, when we set up the first university institute in the 1990s also.

This year, the various charities have come together to establish the Epilepsy Research Institute UK. That's a major development, a national institute which has the potential to vastly increase the research. And even today I got an email, they put out a bulletin every month telling us what's going on in research in epilepsy, which is amazing. And there are people all over the country joining in and discussing their research and presenting their research.

So that's a big change. I can tell you that in my own country.

Dr. Ed Bertram: In just 25 years, that's impressive. There are three organizations that continue to work on this. The League, the Bureau, and the WHO. Do they, in your mind, even from the beginning, did they have very distinct roles in this?

Dr. Ted Reynolds: Yes, in the sense that we mobilize the League chapters and the Bureau chapters, so each, there is a history, of course, when the League and the Bureau didn't get on so well back in the 1980s, but at the time I was president, the League and the Bureau were working very well together, and they had interlocking executives, and that helps enormously.

The WHO doesn't have national chapters; it has regional offices. They went out of their way to mobilize their regional offices, alerted them to what was going on when we launched, certainly when we launched the second phase of the campaign in 2001, every regional office was represented. And we mobilized the neurological NGOs to come and support us, which most of them did.

So yes, each has a role, a professional role, a public and lay role, and a political role. And I think it's the partnership of the three that can make a difference and has made a difference.

Dr. Ed Bertram: One of the things that struck me, and you just mentioned this was that WHO has regional offices. My impression from your recent Epilepsia Open paper was that the League didn't have that, really, at the time of the global campaign began. Was this one of the driving forces for creating more formal regionalized structures for the league?

Dr. Ted Reynolds: It certainly helped. That wasn't the motivation. My motivation was to take a global approach to a global problem.

I was hardly myself aware of the regional structures of the WHO when I started. I mean, WHO is complex. It is a bit unfathomable, and you have to make an effort to understand how it works, which I made a big effort to do. And I gradually learned about its structures, and I gradually learned who were the most influential people and that eventually you need to get to the Director General, which we did.

And that was a major achievement to get the Director General behind a global campaign for a non-communicable disease, the first one ever. Because as you can well understand, the WHO is terribly preoccupied with infectious diseases, communicable diseases. Dr. Gro Harlem Brundtland, a Norwegian physician, it worked to our advantage when she came in in 1998. She had already made up her mind that she wanted to give non-communicable diseases as much attention as communicable diseases. First time ever in the WHO, well that was good for us.

I don't know what the situation is now, and I know the structures keep changing, but I'm out of date.

Dr. Ed Bertram: I think that's a testament there to what you achieved is just the persistence, that you have to keep working on them. It's an important aspect.

One of the things that I recall early on was that, I know Hanneke de Boer was very proud of this, that there was an atlas of epilepsy resources, I think by country that you created with the WHO. What was the reason for doing that and how did you go about doing it?

Dr. Ted Reynolds: Well, it was a fairly logical thing to do. I didn't have much to do with that because I think that came out after the launch of the second phase when I stepped down, and Hanneke de Boer took over as chairperson, and she pushed this very hard, quite rightly.

I mean, if you want to know, if you want to make a difference globally, you need to know what's going on globally. And so it was a very worthwhile attempt to try and establish what services were or were not available.

Dr. Ed Bertram: I've seen it, it's a very impressive report in terms of where there are training programs, who has the expertise and all of that, and access to medications. It's a good starting point for being able to measure success.

Dr. Ted Reynolds: Yes.

Dr. Ed Bertram: So, looking back now, are you impressed, pleased with the progress that has been made over the 25 years or more, about 25 years since the campaign started?

Dr. Ted Reynolds: Yes, it's exceeded my expectations, to be honest. It's taken longer than I had anticipated, but you know, when you think what you're trying to do with a global problem, of course, it's probably not been too long, but to mobilize, first of all, we had 60 chapters at the launch of the campaign, I'm not even sure how many chapters there are now, but we're well into the hundreds. Well, there are 194 countries affiliated to WHO, to the United Nations and WHO, so we had to grow as well, which it has been doing, and the Bureau similarly.

And to think that by 2015, we got WHO, 194 countries, to pass a resolution recommending or demanding departments of health in every country in the world to develop their own national programs to improve prevention, treatment, care, for epilepsy. That was a major milestone.

And then to my great pleasure, I have to say, to see that it joined forces with the neurological NGOs. Some of the neurological NGOs were preoccupied with why are we under mental health? They wanted to get that out of the way first before they could come to join this sort of campaign. And they never resolved that problem, except I think people have come to understand that it's not such a big deal. But to have the neurological NGOs, the World Federation of Neurology, joining in, and I give enormous credit to my good friend, Professor Raad Shakir, who was president of WFN in in that era. He joined with the League and Bureau in getting this through. He had an interest in epilepsy, and then his successors have done the same, and their executives. So I'm very pleased to see this evolve into a joint campaign with other neurologic groups. I hadn't anticipated that but I'm pleased to see it.

Dr. Ed Bertram: It's amazing what will happen once you get things started. They take on some momentum.

Dr. Ted Reynolds: Yes, but then each executive of the League and the Bureau…I think you've been involved with the league for quite a few years. A couple of decades, haven't you?

Dr. Ed Bertram: I first started in 2007. Sort of.

Dr. Ted Reynolds: Yeah. So nearly two decades. So you've seen each executive trying to do their bit, increase the reach and momentum. And of course, getting the WHO to pass these resolutions, these are milestones. This is another milestone in the progress of bringing treatment to a very treatable brain disorder and to destigmatizing it and bringing it out of the shadows still.

So, yes, I'm delighted to see all that.

Dr. Ed Bertram: I think that this is another example, you know, ever since you got started of the necessity for persistence and a long term perspective on moving things forward.

Dr. Ted Reynolds: Yes, I think that is true. I think it is the dawning of the fact that this is a global problem. You know, epilepsy is truly a global problem more so than I think I'm aware with other diseases and that there are global organizations that can get together and try and do something about it together. I think that was the key really.

Dr. Ed Bertram: It gives us hope that better days are coming.

Well, thank you so much. This has been very enjoyable talking with you and getting your perspective on the out the history of the and how much progress has been made as always. When one is in the middle of things, it's always hard to see how far things have come and there’s always more to do, but we’ve come a long way.