Epileptologists Unite Across the Globe to Aid Ukraine
By Orly Avitzur
April 21, 2022
Article In Brief
As the war in Ukraine continues and the violence against its people escalates, Agnieszka Kielian, MD, a child neurologist who had immigrated to the United States from Poland at age 14, shares how she and a network of volunteer clinicians are working together to get crucial antiseizure medications to patients in Ukraine.
When the Russian military invaded Ukraine on February 24, 2022, the free world watched in horror. Over the past month, as violence against the people of Ukraine escalated, many volunteers around the globe sprang into action. Among them was child neurologist, Agnieszka Kielian, MD, who had immigrated to the United States from Poland at age 14. Currently a PGY-7 fellow in pediatric stroke and neurocritical care at Boston Children's Hospital, she tells an extraordinary tale of how a small network of neurologists grew into a coalition to exchange resources and contacts and to brainstorm on the challenging logistics of delivering antiseizure medication (ASM) into war-torn Ukraine.
What inspired you to undertake this humanitarian work in Ukraine?
As the initial days unfolded, we continued to witness ongoing violence and inhumane acts against the free and courageous people of Ukraine. When I first learned about these atrocities, as a human being and a physician, I had an immediate visceral reaction. I wanted to do something, anything, to help Ukrainians. This war hits close to home, on many levels, including geographically as Ukraine shares a border with my birth country of Poland, and our values are quite similar. While the death toll rises daily, war and displacement quickly created many unanticipated needs, including access to medications which placed people with epilepsy at risk for serious injury and death.
How did you first become aware of the dire need for ASM?
Within days of the Russian invasion, Olha Tychkivska, MD, a Ukrainian pediatric epileptologist who had completed her epilepsy training at the Toronto Hospital for Sick Children, reached out to my colleague, Aris Hadjinicolaou, MD, FRCPC, FAAP, currently a clinical neurophysiology fellow at Boston Children's Hospital, who had trained with her. Together, they drafted an appeal with the Ukrainian League Against Epilepsy (ULAE) under the leadership of Andriy Dubenko, MD, PhD; Volodymyr Kharytonov, MD, PhD; and Yana Martynenko, MD. The letter described a shortage of all ASMs, which were no longer available even for purchase. While many NGOs and governmental agencies are working on critical access to food, shelter, medical supplies, medications, and other essential items, ASMs often are not prioritized. Together with Dr. Hadjinicolaou and Christina Briscoe Abath, MD, child neurology chief resident at Boston Children's Hospital, we posted the ULAE appeal on social media and reached out to many national and international neurology and epilepsy organizations.
What was the response to your post?
The outreach was met by an incredible response from our local and international neurology community. Through social media and our personal and professional networks, we were able to connect with two AAN members: Alina Ivaniuk, MD, a Ukrainian adult neurologist who is doing a research fellowship at the Cleveland Clinic, and Svetlana Faktorovich, MD, a Ukrainian neurologist at the Marcus Neuroscience Institute in Florida. We formed a small group, which also includes Dr. Tychkivska, in Lviv, with the goal of catalyzing response for getting ASM to Ukraine. We continue to add members to our small group who are actively working towards this goal who may not be mentioned at the time of writing this and to whom we are very grateful. Additionally, our hospital (Boston Children's Hospital) has recently launched the Boston Children's Global Pediatric Humanitarian Fund that will enable the hospital to support families anywhere that crisis strikes, with its first response directed to support the people of Ukraine.
Can you describe how you are approaching the challenge of delivering ASM to Ukraine mid-war?
Our efforts have been predominantly focused on coordinating and logistics between individuals and organizations who would like to donate ASM and our colleagues on the ground. Our efforts have thus far had three main prongs: coordination and logistics, prioritization of specific medications requested, and dissemination of information and arranging connections among interested individuals. First, we wanted to ensure that there is a confirmed transport route of ASM into Ukraine. The ULAE identified two organizations, Neurosphera and Fundacja Emergen in Warsaw, Poland, which have established a land conduit to Ukraine via Poland. We are in close contact with these organizations on an ongoing basis to confirm that they are able to receive and deliver the shipments of ASM to Ukraine.
We are continuing to identify other organizations with transit routes into Ukraine or those interested in providing assistance. Secondly, we are in daily contact with Dr. Tychkivska and have standing weekly meetings to identify which medications are in greatest demand and to provide any other help that we can. We recognize that things can change quickly, which is why we maintain a dynamic model of response to address local needs as they arise or pause and redirect donations if new challenges arise.
What mechanisms have you used to spread the word and solicit aid?
We have reached out to our professional contacts directly and more broadly to social media to inform as many people as we can in order to encourage those who are able to join our efforts. We also are working to connect people who share the same goals. Through the generosity of the Marcus Institute in Florida, Dr. Faktorovich (Reinhardt) was able to establish an account within the hospital structure which allows her to fundraise for humanitarian aid to Ukraine. She has raised approximately $30,000 to date, which is earmarked for ASM and other critical neurology medications which she is able to purchase wholesale. In addition, many private and individual donors have reached out to us, and we have been able to help send their shipments through to Ukraine for distribution. Members of our group have also joined task forces with various national and international organizations involved in response to this humanitarian crisis in hopes of being a catalyst for a short-term rapid relief while a larger international response is being organized.
Can you describe the resources and tools your group has created?
At the request of our Ukrainian colleagues, we have created a Seizure Resource Guide, which includes information on what to do when someone has a seizure, how to tailor seizure rescue dosing, how to facilitate conversion between different benzodiazepines, what to do if one needs to leave abruptly with or without medications, a guidance for dietary therapies, and advice for pregnant women with epilepsy. This guide, translated into Ukrainian by our colleague, Alina Ivaniuk, MD, is currently available online and will be printed and distributed to people with epilepsy. Secondly, we created an advisory on the logistical corridor we have been using to donate medications so others can take advantage of it.
Finally, we have begun to create a database of providers, including those who speak Ukrainian, Russian, and Polish, and who would be able to provide consultations via telemedicine to the people in Ukraine as well as to the Ukrainian refugees.
What has been your greatest challenge thus far?
The greatest challenge to date has been figuring out how to ship ASM to Poland from which they could be delivered to Ukraine, particularly when it comes to controlled substances which are used as seizure rescue medications (e.g., lorazepam, diazepam, and other benzodiazepines). This has not only been difficult from a logistical perspective but has also been met with hesitation by individuals and organizations and concern that medication may get into the wrong hands. This highlights the need for diligent confirmation of reliable conduits and careful oversight of the entire process from procurement of the medications to their delivery in endpoint hospitals in Ukraine—a process to which our group is dedicated. Nevertheless, it has been incredibly encouraging to witness how everyone is uniting around the cause and how people are willing and able to find creative solutions to new challenges that continue to arise.
How did you manage to handle the logistics of deliveries?
The ULAE identified the two organizations I previously mentioned, which have been actively helping with organizing and transporting the medications to Ukraine: Neurosphera and Fundacja Emergen in Warsaw, Poland. We independently verified that these organizations have established land conduits to Ukraine via Poland and have confirmed that the medications are getting from Poland to Ukraine. To date, these organizations have indicated that it is best to receive medications rather than monetary aid as they may not be able to buy these medications locally.
Dr. Faktorovich (Reinhardt) also has the capacity to buy and ship ASM through her hospital at wholesale prices. Even a small donation can make a difference. For example, 500 tabs of levetiracetam (500mg) costs $54 (US), which would supply up to eight individuals for a month. Donations to that fund can be made directly at https://donate.brrh.com/ukraine-humanitarian-aid/. One hundred percent of the donations to this fund go to medical supplies and medications.
We are currently looking to establish partnerships with humanitarian organizations working within the region to secure additional conduits for ASM.
What have you learned over the past month?
Everyone can help and each person's help is greatly appreciated by our brave colleagues in Ukraine. Together we are strong and can achieve anything, and a little goes a long way. As epilepsy and neurology providers, we want to address care for vulnerable patients with neurologic diseases, which are not always prioritized during wartime. We hope to make a small contribution by increasing access to ASM and to epilepsy care for people with seizures affected by this war. If you are interested in helping, please do not hesitate to reach out. We encourage those who wish to contact our US based team; we can often help triage and troubleshoot, thereby decreasing the burden on our colleagues in Poland and Ukraine. The information on how to keep supplies going to the Ukraine will be updated as needed; the situation is fluid. For information on contacts and resources—and updates—to help with this initiative, please reference this document: https://bit.ly/3iU7fZ2.