Epilepsy care in Ukraine, one year later: Some crises have subsided, but others loom large

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Newswise — How has the war in Ukraine affected people with epilepsy and their families, as well as the physicians who care for them? Dr. Alina Ivaniuk speaks with Dr. Olha Tychkivska about efforts to obtain and distribute anti-seizure medications, as well as other challenges to epilepsy care.

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Podcast Transcript

Dr. Alina Ivaniuk: Greetings everyone, I’m Alina Ivaniuk from YES-ILAE and today I have a special guest to speak with on a very special topic. A year ago was the start of the full-scale war. The lives and health of millions of ordinary Ukrainians came under stress. Among those are thousands of people with epilepsy. In this Sharp Waves episode, I’m talking to my esteemed colleague, Dr. Olha Tychkivska, who has been standing and continues to stand on the front lines of providing epilepsy care to Ukrainians.

Olha, could you please tell our listeners a bit about yourself.

Dr. Olha Tychkivska: Thank you, Alina – it’s a big honor to participate in this conversation with you today. My name is Olha Tychkivska, and I am a pediatric neurologist and neurophysiologist working in St Nicholas Hospital and Lviv National Medical University in Ukraine. So, Lviv is the city in the west of Ukraine, one of the biggest cities. And besides that, I’m also an assistant professor in the department of pediatrics and neonatology at our university.

Dr. Ivaniuk: Excellent. Thank you, Olha. Well let’s get started, and we will start with not the most pleasant recall. After the war started, our lives changed immediately — but when did you notice that the problems with people with epilepsy arrived? For example, when did you get the first call from an epilepsy patient or the parent of your patient asking for help?

Dr. Tychkivska: Day 1, it was a great shock, and complete absence of understanding how lives will look tomorrow. And of course, Day 2, we started actually looking for possibilities to help those who are going to the front line. I didn’t think we would face another issue besides the deficit of drugs that our front liners face. And this problem arose maybe on Day 3 or 4. I think why it happened, because people panicking, you know, that the war started, that the borders will be closed and who knows whether drugs will be delivered to the pharmacies. They ran into the pharmacies to buy whatever is left on the shelves. 

At the time that I was still gathering some supplies for the soldiers and for my colleagues who were getting ready to go to the front lines to work in a medical teams there or just to go there as bystanders, soldiers, my classmates, my close friends, and I was gathering boxes of medical supplies for them to take with, I realized – I got a call from one of the mothers who was asking me about a drug that was not registered in Ukraine but that she used to bring from Poland or other neighboring countries. Now, the father of her child was not able to go abroad to bring the drug, because you know men under a certain age were not permitted to cross the border. And she was asking me do you have any idea or do you have other families that take this drug and maybe they have extra supplies? That was the first call I remember. 

And the second call was from a family – they were looking for a drug that is registered in Ukraine and surprisingly the family was living in the west, and they told me, “We cannot find this drug in any of the pharmacies, and we are left with a three-day supply.” And when going into the pharmacies looking for supplies for the military people, soldiers, I was asking, “Do you have any anti-seizure drugs left?” And when I realized the answer is no, almost in every single pharmacy, this is when I sat down kind of in shock, understanding that oh, we have a problem, we have really an issue. I started calling my colleagues trying to understand also what the situation is in other cities, so I called Kyiv, I called to colleagues in Dnipro, and I realized that the situation is pretty similar.

Then I started calling the representatives of the pharmaceutical industry and when I heard that answer, “We actually don’t know when the next supply of drugs will be,” that was the moment when I cried.

I just came from Toronto where I finished my fellowship in epilepsy and neurophysiology, you know this was like a completely new experience, new knowledge and I was so keen to bring them home and to start actually using it in my everyday practice, to share with my colleagues new ways of treatment, new ways of management, maybe new options and alternatives for our patients who we thought are very difficult to treat. And I understand here that all my knowledge and experience does not matter because I don’t have drugs. And this is one of the instruments that I have to use to help my patients. I know how to, but I don’t have any instruments that I can use to help them.

This was a very desperate feeling, I have to say.

Dr. Ivaniuk: I can only imagine how desperate you were and how desperate the patients were who realized all of a sudden that the medications they urgently need are not there anymore. So as far as I understand, the drug shortage was the first and the most significant problem. Were there any other problems? Were they able to even get to the doctor to get help?

Dr. Tychkivska: Another huge issue that arose but probably at the end of the first week of war, maybe Day 5 or 6, which we actually started feeling being on the west, on the relatively maybe safer territory of Ukraine, at least this was not the frontline. We started having many patients coming day and night, running from war from the north, from the south, and from the east. Some of them just left their drugs at home because they took whatever was close to them – they just grabbed one pair of pants you know and a jacket while trying to escape. 

And then a lot of children already in a very severe condition because they missed their drugs on the way from where they used to live to Lviv, and in our city they finally made it to the hospital, they finally made it to the doctor. The departments were crowded with such children. Actually those were children and mothers and sometimes the whole family that just didn’t have a place to stay, you know and we couldn’t say, “Okay, you stay, and you go.” We couldn’t just leave them on the street; this was the wintertime. So the hospital was this temporary shelter for families who were arriving with a very sick child.

We also were running out of drugs at the hospital, and we realized if these kids will continue coming, asking for additional amounts of drugs, we will not have enough to give them. We do have an issue with the rescue drugs in Ukraine, this was even before war, because some of the drugs are not registered and some of them are hard to get. But now, when the war came, the issue became even more severe. Sometimes you think, “Okay, I can use benzos as a bridge maybe,” but in this case we were running out even of benzos. So that was another huge struggle for us. And that’s where we actually started calling for help.

Dr. Ivaniuk: You yourself tried to address this challenge, this issue, and you started volunteering together to get antiseizure medications wherever you could. So could you please tell us a bit more about how it started, how you organized that, how it overall fit into the framework of helping people with epilepsy in Ukraine.

Dr. Tychkivska: Yeah, this was one of the mornings when I woke up and decided okay, if my colleagues cannot help and the situation is pretty much the same across Ukraine, I just drafted a letter of appeal. Appeal about help. I wasn’t sure who to address this letter so I just drafted it, explaining what the situation is in Ukraine, explaining that we are running even out of the commonly used drugs and then I kind of copied it into my email and I decided to share with my close colleagues, first of all with the former fellows that I used to work with at Sick Kids Hospital in Toronto, to my mentors, those were the first people I decided to send this letter. Asking for advice, asking for help. They really were the first ones who reacted to this letter and who actually proposed several ways of finding a decision here. 

It was only after that when I actually also copied this letter and sent it to my colleague in Kyiv, Dr. Kharytonov, and shared with my colleagues here in Lviv, and then the idea came to make it an official letter and to make an official appeal to international organizations, so ILAE and other organizations, asking for help.

I remember at that time, Dr. Dubenko, the head of the Ukrainian League Against Epilepsy (ULAE), he was in Kharkiv, and Kharkiv was heavily bombed. We couldn’t reach him to even get his permission or signature to send this letter on behalf of the league, so Dr. Kharytonov took the responsibility as being the secretary of ULAE to sign this letter, and we were able to send it as well to the international organizations whom we thought may be capable of providing help and support.

Dr. Ivaniuk: So now what are the main sources of anti-seizure medication supplies? As far as I can understand there are some private bodies who are donating medications, but also some bigger organizations. 

Dr. Tychkivska: Basically after the letter was sent, I remember, well, representatives of YES [ILAE's Young Epilepsy Section] were one of the first who reacted to the letter and I remember Dr. Aris Hadjinicolaou who reacted to the letter and set the connection between me and YES-ILAE, which was a great connection and I’m very grateful for him. Thanks to their efforts, also the efforts of Brother’s Brother Foundation. This group is permanently in contact with us. At times even if I am not on time sending a list of needs, they will be asking me what else is needed. What are the needs.

And then there is also a great organization and clinic in Poland, Neurosphera, which is run by Dr. Piotr Zwoliński. Actually Dr. Zwolínski was the first one to call – he didn’t even see the letter, he just decided to call someone, you know, the representatives of ULAE and ask if we needed any help. He called Dr. Dubenko who was in the shelter from the bombs, and he was saying, “I am a physician from Poland and I want to help,” and at that point Dr. Dubenko was in such huge stress that he couldn’t hear anything, understand anything.

The first help that we got actually was from Polish colleagues, neighbors. They gathered whatever they could from patients. Sometimes you would get, I remember, one tablet in one box. But it was so precious for our patients at that time. 

After that I think chapters, like the European League Against Epilepsy chapters, also tried to help us. I still remember every box was packed with signatures and warm wishes of victory and peace to all of us. I’m afraid I may forget all the people that actually were trying to help but we are thankful to each and every one because in those harder times, this was the only resource of drugs that our patients could count on.

We organized ourselves in church. So one of the churches in my city provided us with several rooms where we could organize a little warehouse, where we could spend our evenings after work or weekends sorting out drugs, responding to messages and calls and sending packages to families or hospitals. This was how we started. Then of course with the help of ULAE, we were able to organize registrations through their website, where we put a registration form for families and patients who were in need of drugs. We also gave, spread information between physicians and asked them to gather information about their patients and maybe provide their list of patients who may need certain drugs. And this is how we gathered almost 3,000 families. 

We sorted all the families you know by region and started working like that. So initially we thought maybe we will be sending drugs to the regional centers, and from there doctors will be able to spread drugs to families. But this didn’t work very well, because especially in the front-line regions, the war would change geography all the time, people would have to go from one place to another and it was very important for us to keep contact with every single family to understand how they move, where they go, so we can actually change sometimes the direction that the package actually went. So that is why we were asking volunteer drivers who were going to certain places to bring certain drugs. 

We were using special post office, the quick delivery, and we were calling every single family to make sure they were still within the country, they still need the drugs. Pretty much at the beginning it was up to 200 packages per week I would say, now I would say it’s about 50 per week. Unfortunately, we had cases where patients did not, were not able to get drugs from us and you know about these two deaths from lack of anti-seizure medications in the south region, which were reported to us by family members. We also know about the killing of a volunteer who was trying to help us deliver drugs to those kids. Again, in the south

All of this did not stop us from doing what we’re doing; now the situation is of course way better, because at these pharmacies in the territories where the war is not actively going on, at least they can have deliveries of certain drugs, especially those that are registered. Not all forms of drugs are available, unfortunately, because some pharmaceutical factories were destroyed. 

And another issue is a financial issue. A lot of our families are actually running into financial trouble because they cannot afford everyday living to afford food and clothes for their children, and of course drugs are expensive and that is why even though drugs may be available in pharmacies, they won’t just ask because they can’t afford to buy them.

We have tried to keep an eye on the front-line regions because unfortunately, the delivery of drugs there is very poor. I mean now they have a lot of trouble to find their way to deliver drugs to occupied territories. There are several very painful stories where we are making the fifth or sixth try to, you know, send drugs to them through different organizations, volunteer, charitable foundations, and we are not successful. There was a case where the drugs were just thrown into a trash can in front of the eyes of the volunteers who were trying to deliver them. The volunteers would not be allowed to go with the drugs or the drugs would be just taken away from them, even though we would say. "This is for children, this is not for soldiers or military people." 

Dr. Ivaniuk: That’s just unbelievable how you and your colleagues were able to organize everything and how many people answered your call and actually helped you and are continuing to help. Now, what are the needs of Ukrainians with epilepsy besides medication? What do they need and how are you trying to address those care gaps that exist?

Regarding epilepsy care, of course the access to diagnostic procedures, even let’s say EEG, this is an issue for those children. Hospitals are destroyed, buildings are destroyed, you know we had a story recently; we were delivering drugs and supplies to Kherson Regional Pediatric Hospital and one hour after, it was just covered with missiles. This is another very painful story for us.

So again, the access to care is not there. Even to the basic care, I’m not even talking about the more advanced diagnostic procedures. We do have families from the east and south who are coming to get an EEG here in the west, where we still are capable of doing that. But that’s why the waiting list is growing longer and longer, of course we are trying to work after hours, trying to work on weekends to cover, but you know, the physical resource of some of the physicians is not unlimited. That is an issue for us right now.

At the beginning of the war, we were all trying to push ourselves hard, to work as much as we can, but at some point we all realize okay, you know, it was even hard to share with colleagues and to say you know what, I’m tired. Because when you say you are tired and you think of the soldiers who fight on the front line, you cannot compare your tiredness and exhaustion with what they are going through. And then you push yourself again, but you just feel that you cannot work in the same tempo as you used to. 

Epilepsy surgery, well, this was a developing issue in Ukraine, epilepsy surgery was not actively planned in Ukraine before but we were trying to set up several programs and started doing some of the surgeries, I guess now it is limited to two or three centers in Ukraine and of course we are not moving any faster, what we were planning to do. Because we are kind of trying to keep the level where we were at, of course doctors  still have to participate in conferences, seminars, to keep their level and not to lose the knowledge, because the first several months were very hard for us. It was very hard to sit down calmly in front of the screen and listen to an online seminar or conference and try to pretend you are attentive and you are getting the information. 

But now the doctors are returning to that understanding, that they have to, no matter what, self-educate themselves because we have new issues that are arising and nobody is going to do that for us. We have a lot of let’s say psychogenic seizures, non-epileptic events coming. We have a lot of PTSD cases coming. And we know that epilepsy is worsening in someone who is struggling also with all of these psychological and psychogenic issues. And unfortunately now we have to think about organizing rehabilitation and consulting because this is something new for us. I can say that rehabilitation was not at a great level in Ukraine before, as a developing country we were struggling a lot with that, but now with these issues and having so many patients who need this, we are struggling even more.

Dr. Ivaniuk: This is so sobering, all those issues that not only patients face but also physicians who provide care to the patients during war. And I can just imagine how hard it is to keep on with everything that you and your colleagues do with providing the actual care, volunteering, and all the continuing medical education. It must be really hard and applause to you for managing to keep on with all of that. 

One of the categories of people about which I would like to also talk are people who had to escape the country. People who are now abroad, people with epilepsy, families with epilepsy who are seeking care abroad. Do you know what are the barriers or issues that they face and do they manage to get help in the countries they end up in?

Dr. Tychkivska: Yeah, thank you for this question. Honestly saying there are…at the beginning we were encouraging some of the families to go abroad. At times we were trying to find time before sending someone abroad we were trying to contact specialists abroad to make sure they will go straight to the hands they need to go. But at that time also we realized that because of all the connection issues and the timing, we were not able to manage all of these issues. Sometimes you provide maybe just the name of a center and say, "Go to this city and try to go to a doctor there and get some care." Yes. So some of the patients just decided on their own, not just patients, families decided on their own that they want to leave the country to keep their kids safe or to stay in a safer place, and that’s understandable because nobody know what is going to happen. 

Of course the first barrier was the language for many of them, not knowing a foreign language and to be able to completely explain what’s going on with your child, this is a huge barrier that actually affects that ability to get proper care. Stress, right? People were stressed, very emotional, and at times you know it would actually prevent them from thinking appropriately. So a lot of mothers would say, "We would come to a different city and just the fact that we are in a different country, not in our house, would just make me sit here being completely depressed, not wanting to go anywhere, you know, and to ask for any help at all."

I had several cases of my patients who went abroad and who were able to make it to a physician, but there were at least two cases that I can remember, kids who were deteriorating in terms of bad development and who I understood really needed surgery as soon as possible given their pharmacoresistance, but because being in a different country the assessment of psychomotor development and decline was impossible. It was hard to bring to the physician there that we have this issue. Besides seizure control there is another issue. And sometimes physicians were trying to take control of the seizures, not really paying attention to whatever is going on besides that. Sometimes I would try to connect with the physician abroad to explain what’s going on because you can understand the doctors really want to have facts.

I think another issue for them, a lot of the families went abroad and maybe you know knowing that in a month or two they will be coming back, right, but that kind of didn’t happen and they had to stay there and to organize their lives there, sometimes waiting on a long waiting list. Which is understandable because we know that kids, sometimes kids who live in the country who are citizens of the country are waiting on the waiting list as well. But this would give additional stress to parents, not knowing where to go, where to ask for help in case of emergency, again, language barriers, so yeah. We had a lot of calls from abroad. There were even situations where they would call and ask, “Please send us drugs because we don’t know where to get them here.”

We are very grateful, we know how warmly our neighboring countries accepted our people and we know how much was done for our mothers and children, for older people, and now that we have actually started cooperation more officially, let’s say we have a child and we cannot go through the diagnostic tests properly, we need someone abroad to help and we can organize that. Colleagues from abroad accept these children. This is incredibly helpful. This is a huge issue, yes we are fighting this war but as I said it would be way more headache if we didn’t have this support. 

Dr. Ivaniuk: All the problems that we talked about so far, which problems do you think will be the most significant after the war ends?

Dr. Tychkivska: We will have to rebuild, you know, a big part of eastern Ukraine, southern Ukraine, northern Ukraine, and also cities and some places in the west. Some physicians actually left because they are now in military medical care and they used to cover positions as family physicians, surgeons, anesthesiologists, but now they are gone because they have a duty to be there, they are needed there. So again, the lack of medical physicians and nurses, this is probably what we are going to face right now. 

A lot of families are left without a father or mother, you know, or both parents. We have a lot of orphans, and again, they will also need to be taken care of in a proper way. And we want to make sure that these children will also make it in time to the hospital and will get proper care, not just children who have parents. So, to set this contact with orphanages is very important.

Financial issues means that we will need probably to keep going with our volunteer kind of project, even after the war will end. Because I’m sure a lot of families will want to return back home, they will need time to settle down here, a lot of families you know will try to start over, and they will also need our support.

Besides that, social care, psychological support, rehabilitation, we are now working actively in building and founding rehabilitation centers because the demand is growing very fast. We have a lot of families who are now coming back because kids could not stay abroad because they were missing their fathers so badly or their houses or homes so badly. I have seven kids who came back home because they had complete non control of their seizures because of the stress of the situation. You know that they are in another foreign country and they just wanted to come back home, and as soon as they get here, no matter that there are bombs and alarms and they have to go to the shelter, and they don’t get enough sleep, they are feeling better here.

So, I probably cannot imagine right now all the challenges that we will have to meet after, but those are just already the things that we are dealing with right now.

Dr. Ivaniuk: How can our listeners, if they are willing, help you in everything that you do?

Dr. Tychkivska: I would say whatever is already being done is great. I would say sometimes financial help is great but there are moments where even if we have money, we are not able to buy certain medical supplies here so we actually ask more for, let’s say, anti-seizure drugs. Even if we had money, we would not be able to buy whatever the kids needed. That is why getting the actual medicine from abroad is actually more helpful at times.

Talking about Ukrainians, spreading the information that the war is still ongoing, and we are struggling. Unfortunately, it didn’t get easier, you know, I feel like we are struggling with more and more issues. For a lot of other families here, even emotional support, calls from friends abroad, from colleagues abroad, asking how you are doing. We are very grateful to those who provide educational support to us, even online, who consult with us on how to provide care in different circumstances, organize like seminars, lectures, with us, this is actually very helpful to our physicians.

We are also very grateful to those who are brave enough to come and help organize medical care in our hospitals, maybe assessing the circumstances or the actual situation in our hospitals. Of course, if I’m going to back to epilepsy patients, a huge issue there besides the drugs that we are facing right now is we are not able for example to do certain laboratory tests. Let’s say autoimmune encephalitis, we cannot do panels on our patients because we used to send the samples abroad; now it is very hard to do and always we have to find hospitals or clinics. 

So, if there is anyone who can volunteer to help us with that, even if it has to be financially covered – we can find money, but we need someone who can say, "Okay, we can help you," you know, with analyzing CSF or autoimmune disorders… or genetic testing, because in the past we were able to send samples easily. Now it’s actually more complicated. 

Epilepsy surgery. We are very limited. We are looking for centers that maybe can accept our children and help, especially those who have hard situations regarding their seizures or who are deteriorating in terms of their development. 

I guess supporting our families who are still leaving the country, but I mean I really hope this will end soon, you know, we will be able to be free, to have freedom in Ukraine and we will come back to our normal lives.

Dr. Ivaniuk: Olha, thank you so much for your time and for everything you do, for Ukrainians with epilepsy and for Ukrainians overall.

Dr. Tychkivska: Thank you for standing with Ukraine. We feel it, and this is very important to us. I’m already getting emotional because always when I say thank you, I go back to those times when the first packages of anti-seizure drugs came, and I remember what a relief it was to be able to give these drugs to children who were waiting for them. So, thank you for being there for us. We appreciate it, and I just wish for people never to know what war is.

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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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