How a Polish Rare Disease Organizations Is Helping Its Ukrainian Neighbors

May 6, 2022

The Russian invasion of Ukraine that began at the end of February has caused more than 5 million people to flee the country as the brutal assault has not spared civilian populations, schools, or hospitals. For people with rare diseases, the war has sent families in search of needed medications and care as they have crossed the border in search of help. Healthcare Education Institute, a Poland-base rare disease advocacy group, has been working to help Ukrainians with rare diseases get across the border, find accommodations, and connect them to medical care. We spoke to Adrian Goretzki, founder and president of the foundation, about the needs of Ukrainians with rare diseases, what his organization has been able to do to help, and why the humanitarian crisis for these rare disease patients will last beyond the current hostilities.


Daniel Levine: Adrian. Thanks for joining us.

Adrian Goretzki: Hello Danny. Thank you for inviting me here.

Daniel Levine: We’re going to talk about the Healthcare Education Institute, the work it’s been doing to help Ukrainian refugees with rare diseases and their ongoing needs. Perhaps, though, we can begin with the Healthcare Education Institute. What is the Healthcare Education Institute and what was the work it was doing before the invasion of Ukraine?

Adrian Goretzki: Let me start with the very beginning of my route as a patient advocate, because I’m a patient with rare disease myself. I am a patient with x-linked agammaglobulinemia, and I was engaged in a Polish nationwide association for patients with immune deficiencies in since I was a teenager. Then I was a board member, then president of this association, and I was leader of this society for over 10 years. I also was a board member of the international umbrella organization. But in 2017, I decided to step back, step down and start my own non-profit, which would be a think tank taking care of rare diseases in Poland and in Europe, mostly on the scientific and legal basis. So, since 2017, I am engaged in creating reports about various rare diseases, analyses, legal analyses, scientific analyses, and research in the field of quality of life of patients with rare diseases, doing everything that can improve the life of patients with rare diseases, but from another level than being a patient advocate on the ground. Well, since the war started, we all decided that we need to be back as patient advocates—100% as patient advocates, and we need to help those people fleeing the war.

Daniel Levine: My guess is that most listeners will not have a terribly good sense of the healthcare system in Poland. What is it like to live with a rare condition in Poland and how well are these conditions addressed in the country?

Adrian Goretzki: Well, every early situation gets better. We’ve got a single payer public healthcare system in Poland, like other EU countries. Of course, the level of healthcare in Poland is somewhat lower than in the Western European states. When it comes to our part of Europe, central Eastern European new countries, the level is, I would say, okay, and it’s getting better every year. Every year there are new diseases that are being treated and the treatment is being reimbursed by the state. So, it’s free of charge for patients with rare diseases. I mean, we are in the middle of the road, but the situation is getting better are every day. And I can say that most of the known and treated rare diseases that are also treated in the U.S. or in Europe, most of them are also being treated and the treatment is available in Poland. And of course, we’ve got a much better situation than in Eastern Europe like Belarus or Ukraine.

Daniel Levine: You’re rare disease patient and a rare disease patient advocate, as you mentioned. You’re based in Katowice, Poland, about 250 miles from Lviv and about 200 miles from the Ukrainian border. How did the Russian invasion in February change the work you’re doing?

Adrian Goretzki: Totally, the invasion changed the work totally, not only because we heard fighting jets over our heads because NATO placed its armed forces near the border, but also because all our day-to-day projects have been canceled or stopped or frozen because of the war. I mean, when we did some PR projects or were about to publish reports, or something like that, well, the media are talking, we’re talking mostly about the war. The climate is not good. This is not a good time to do projects like these. So, most of our projects were stopped by the clients. Even though we are a nonprofit, we need to have some commercial activity to have the foundation in a good position. So, everything has been stopped. And we also decided that we stopped all the other projects and we needed focus ourselves on helping those patients with chronic rare diseases in Ukraine. So, the invasion changed everything. It’s changed, not only the political landscape, the social landscape, but also has a great impact on the work of many NGOs in public like ours.

Daniel Levine: Prior to the breakout of the war was there much interaction between your organization and patients in Ukraine?

Adrian Goretzki: Yes, because we were organizing a yearly event called the Patient Advocacy Academy, which is a free of charge course for patient advocates, leaders of patient organizations from Europe in the field of rare disease ns and mainly was addressed to the area of plasma-derived therapies. I mean, those rare diseases, which are being treated with plasma-derived therapies. And every year since 2018, the Ukrainian organization was on board. We gave them grants and financial support. We also helped them when they had a crisis in supplies with medicines in Ukraine last year so we know both the physicians and the patient representatives in many fields in many rare diseases in Ukraine. So, we have well established contacts in Ukraine.

Daniel Levine: By latest count, I’ve seen there have been about 5 million Ukrainians who have fled the country since the start of the invasion. Can you give some sense of the world of rare disease in Ukraine? How many people are there with conditions and how available was medical care was for these conditions before the war broke out?

Adrian Goretzki: Well, when it comes to statistics, there are about, 1.5 to 2.5 million people with rare diseases in Ukraine. And, when it comes to the level of care, it is, I’m sorry to say, significantly lower than in European Union countries. This is why we were doing much to support them before the war, and this is why, when they flee to countries in Western Europe, in the European Union, they have a chance to receive better treatment as well. But believe me, most of them would like to go back to their homeland than to even have better treatment in a totally different country. But, yes, there are millions of people with disease in Ukraine. Some of those diseases are well addressed. Some of them are not, generally speaking. Those people coming to Poland and other countries have a chance to receive better healthcare, but nevertheless, when I’m asking them, they always say they would like to go back to their homeland and maybe have better treatment in Ukraine.

Daniel Levine: Many patients in Ukraine have reached out to you for help. What’s the range of things you’ve been doing for patients coming into Poland or traveling through to other countries?

Adrian Goretzki: Well, we do a lot. We are about to provide them comprehensive care. What we do, first of all, is help them when they are in Ukraine. I mean, if the family of a patient or the patient himself or herself, reaches out to us via physician or patient organizations or directly via our Ukrainian websites—because we created such websites—if they are reaching out to us when they are in Ukraine, we can make sure that they will cross the border, that they will cross the border with relatives because there has been the recent change in the law. And since then, men were not allowed to cross the border because they are about to be conscripted into army. So, we also did everything to make sure that families, as a whole, will be able to cross the border. We issue special invitations and so on and work also with other lawyers. If the condition of the patient was very bad, we also organized some humanitarian corridors, I mean, provided fast tracks on the border to make sure that those patients will cross the border without needing to wait hours or even days, which was the usual situation at the beginning of the war. So, this is also what we are doing—making sure if there is a patient that is in need of something, for example, oxygen therapy or is in a very bad condition that we were doing everything to provide them with a fast track. Then we are connecting them with medical centers and looking for temporary shelter to make sure that they will reach a specific city and find a shelter in the city at least for a month and if requiring a longer stay, there are some other possibilities in Poland. I mean, people are still inviting Ukrainians into their homes. There are no refugee camps in Poland and we were securing them shelter and contacting physicians to set up an appointment or hospitalization date. In the meantime, we were translating their medical records from Ukrainian to Polish, but mostly to English, because it’s widely understandable among physicians in Poland. So we are translating their medical records that they have on this first visit. They will have everything set and they can receive the continuation of treatment as fast as  possible after reaching Poland.

Daniel Levine: The cruelty of this war has defied comprehension at times. The attacks haven’t spared civilians, hospitals, schools, and the homes. For rare disease patients who have remained in Ukraine, to what extent are they able to get the care they need?

Adrian Goretzki: Well, it depends on the region of Ukraine, but generally speaking, the situation is bad. because even if there are regions, which are not frequently attacked, because there is no region that hasn’t been attacked by rockets so far, but let’s say that there are western parts of Ukraine, which have just b from been bombed from time to time, not all the time, they have got a lot of internal displaced persons—the internal refugees because people are fleeing not only to the European Union, to Poland, but also to Western Ukraine. So, the hospitals are in operation and are not damaged and have a full medical staff and can operate, but they have twice the number of patients that they need to deal with. So imagine the situation that there is a hospital in Lviv and most of the patients are placed in the basement because of the day-to-day, air raid alarms and the number of patients are doubled. They have a chance to receive therapy as long as the medicines are available in Ukraine, because this is also a problem that some of the medicines are running low or they’re not available in Ukraine. And we need to move those patients to Poland. But the hospitals in the safer parts of Ukraine are crowded.

Daniel Levine: How difficult has it been to get care for Ukrainians with rare diseases who have come across the border?

Adrian Goretzki: Well, it differs when it comes to different countries in the European Union. When it comes to Poland, it’s easy. And it was easy from the very beginning of war as the law that has been passed in Poland grants access to healthcare on the same basis, on the same rules, for Ukrainian refugees for those crossing the border after the day of invasion—on the same basis as for Polish citizens—they deserve to get the public insurance. So, this wasn’t a problem on a legal basis. Of course, there were some problems. We issued some legal opinions: a lawyer issued some legal opinions to prove that they can get the treatment, given those expensive, rare disease treatments, and it occurred to be true after a while and they can get treatment in Poland. When it comes to other countries it’s different. For example, in Germany there are different rules in every region; in every region there are different procedures for the refugees; in some of the regions they need to prove that they are chronically ill, and they need to get this therapy before the physician can make a decision. So, it differs, but maybe after a while, in all European countries, those people are entitled to receive medical care.

Daniel Levine: There have been some remarkable stories of the work you’ve been doing. You’ve been able to help at least 60 patients so far get out of Ukraine, find temporary shelter and also help connect them to medical care. Some of these patients were scheduled for major medical procedures that were disrupted by the war. I wanted to ask you about a few of those stories, starting with a little girl, Emily, who had severe combined immunodeficiency, or SCID, who came from near Lviv. What happened in her case?

Adrian Goretzki: Well, SCID is a very severe condition. This is the Bubble Boy disease and patients with this kind of primary immune deficiency need immediate bone marrow transplantation. And this was the case here. The girl was less than one year old. She was qualified for the bone marrow transplant in Kiev. But the city was bombed. The hospital was closed because it was in the line of fire. And they just told the family that there would be no bone marrow transplantation in Ukraine, even though they’ve got a donor and everything. Well, it was the third day of the war, I believe. They found us. They got a contact for a physician in Lviv, and they asked us what to do. We, of course, didn’t know what the procedures are, because there were no procedures this time, but do we said, please come to Poland, and we’ll find you something. And in less than 24 hours from their call, we found a place, a hospital in Bydgoszcz in the north of Poland, that agreed to hospitalize them and to proceed with the bone marrow transplantation for this child. We also did medical translations, but the most important thing was that we found them a shelter in Bydgoszcz and found a hospital that was willing to help them and to proceed with bone marrow transplantation. Of course, we needed to go to Bydgoszcz and do some tests again and make sure that the donor was still capable of the bone marrow donation, but we did it—in less than 24 hours. And we thought that those procedures were being discussed in the parliament, but they hadn’t been approved yet. We decided we need to take the risk and save this girl. And I’m glad that we did it. I’m very, glad for the help provided by the physicians from the hospital. They also took the risk of taking care of this child without any procedures. But I believe this was the only right thing to do then, both for the physicians and for us, the patient advocates. This story was a quick run for Poland. They first came to us to cut a visa. Then we went 300 kilometers north and placed the girl in the hospital in a separate room with just the mother. And she’s currently waiting for a triple marrow transplant. I’m very, very happy that we could help. It was crazy, but I’m happy that we managed to do it.

Daniel Levine: You had mentioned, early in the war, there was a great backup at the border to get across. There were patients who were stuck there waiting to get across while they were running out of essential medicines. And in many cases, these are medicines that can’t suddenly be stopped without causing serious complications. I know there was a young child with the rare condition KIF1A who was stuck at the border and running out of anti-seizure medication. What were you able to do in cases like that?

Adrian Goretzki: Well, we gathered information from the European umbrella organization for rare disease that there is a case like this, and if you can help, and the family is currently at the border and so on. So, we just grabbed a phone and called our local contacts at the border. We prepared everything for them. I mean, this was an unofficial fast track, but most of our work helping those patients was, to some extent, unofficial because there are still no humanitarian procedures, mentoring procedures for such situations. So, we found the local authorities in the region and using our creative friend, we asked for help also for our recreating front, we managed to get them out of the waiting line at the border and make sure that they could cross the border almost instantly. We issued them an invitation proving that this person, this family is a rare disease family and this boy has a rare disease, and he needs an urgent treatment in Poland, and he’s in a very bad state. So, with those papers in Polish and Ukrainian, with help of our Ukrainian friends there, we were able to speed everything up and to make sure that this family will cross the border immediately. And then we put them in contact with the KIP1A society in Poland, with a family also having a child with KIP1A, and translated their medical documentation and made sure that they could connect with a neurologist or physician who has experience and can treat this disease. So, we did a very rapid and quick action at the border. And then we proceed, as usual, to make sure that this family will receive proper medical care.

Daniel Levine: I know in some instances your organization has purchased needed medicines or medical equipment for these patients. How much help are you getting in your efforts? How supportive have other rare disease patient organizations been, or drug companies, physicians, hospitals?

Adrian Goretzki: Well, when it comes to buying medicines and medical equipment, part of the problem is that hospitals are closed, are being cut from the supplies because of war damages and threats, and for those patients that are in the safer parts of Ukraine, the hospitals are getting overcrowded. So, they need more equipment, more medicines. To some extent, we are able to cover the needs of various groups, people with deficiencies, other immune disorders, people with skin disease. These are the areas where we provided some medical equipment for free, to the hospitals, using various ways. Some of them were our delivered by track. In other ways we used the Ukrainian carriers because all the well-known carrier companies stopped their operations in Ukraine. And, this is what we do. We supply, we deliver those supplies to those that they need them. We receive the lists of needed equipment, and then we do our best to deliver everything we can., if this is not possible, for example, you cannot cross the border from the EU to Ukraine with most medicines because it’s prohibited. So, we are buying the medicines directly in Ukraine. This is what we do when it comes to support. We receive the support from various entities. When it comes to medical supplies, I can name CSL Behring as a company, which gave us a remarkable grant at the very beginning of the war. So, we can send supplies to hospitals in Lviv and in other regions of Ukraine, but also we are getting support from other organizations. We got a grant from Global Genes. We got a grant from Amicus, and also from the Eurodis, the European organization for rare diseases, the umbrella organization in Europe. So yeah, we are receiving help from many sources. We also got some private donations, which I am also very grateful for that allows us not only to provide medicines, but also to be able to do the work that we do. As I mentioned, we stopped other projects and we decided to be engaged here for let’s say, 12 months, because we believe this community and disaster will continue and we are very grateful for every cent because this allows us to work on an everyday basis to make sure that rare disease patients from Ukraine and in Ukraine will receive the help that they need.

Daniel Levine: What’s the ongoing need? What are the biggest challenges you’ve been trying to you address?

Adrian Goretzki: Well, now we are doing everything to set up a working procedures regarding those cases. We need more human resources because we’ve got a team of extremely engaged volunteers, not only in Poland, but also for example, in the United States there is a fantastic girl named Galena from New York that’s helping us with translation. There is also a guy named Alex from London who is also helping us with translation. Those are members of the Ukrainian diaspora. There are fantastic volunteers in Poland on the ground, but they are running out of fuel—you cannot be extremely engaged in free of charge activities for a couple of months. They need to go back to their work and so on. And what we need are human resources. We would like to hire a dedicated project manager, one that can deal with these cases and to provide those families with care and shelter and take care of all those things, and stay in Poland because this is not like that we are closing those cases. We still monitor their fate. So, we need people on the ground. This is what we would like to change in the future.

Daniel Levine: It’s an interesting point. I’m wondering, people are very good about responding to an immediate crisis, but as this conflict drags on and on, is there concern that people will just lose interest and move on to other things?

Adrian Goretzki: I believe this is not about losing interest, because as I said in the very beginning, there are no refugee camps in Poland, which I’m very proud of because the people are inviting Ukrainian refugees into their homes. And this is the reality. So, they are not about to throw them out their homes, but those people and our volunteers and any other volunteers have their day-to- day activities. And they would like to maybe not be exhausted every day going to work and then going to be a volunteer and going back to home at midnight and waking up at five again, to go to work and so on and so on—for free of demands. Maybe it’s all about losing interest because we here are very interested as a society about what’s going on in Ukraine. It’s just about lack of fuel, lack of energy and a need to rest. We would like to formalize it and hire somebody who would be responsible for immediate help to those patients from Ukraine.

Daniel Levine: And what would you like people to understand about the situation and the needs of rare disease patients from Ukraine coming across the border?

Adrian Goretzki: Well, the first thing is that that the humanitarian crisis is not about to end when the war is over. We all believe that the victory is close and the war will stop soon. But even though there is space, not all those patients who come to Ukraine will go back to Ukraine because the country is severely damaged and their homes may be damaged. The infrastructure is broken, is not functioning, especially when it comes to hospitals. So, they want to go back in the minutes after the peace, is, is being, but they won’t go back immediately after there’s peace. This is why society worldwide needs to understand that help will be needed for months. We can estimate that it’s about 12 months and this is why we are writing about our projects regarding Ukraine. This will be an issue for 12 months. There will be new refugees because now there was a war in Kiev. There is now an offensive in the eastern part of Ukraine and we are receiving new refugees from this part of Ukraine. Some of those people are in Western Ukraine, but they are getting low on medicines so they are also deciding to go to the EU countries. So, we are still facing the problem. We will face the problem for months. The national alliances in various countries need to be prepared to provide care for those patients who are going to leave Ukraine for Poland for other EU countries, but also for the U.S. or Canada.

Daniel Levine: For listeners who would like to help financially, or in other ways, where can they learn more?

Adrian Goretzki: You can learn more about our actions on our website, it’s at eduinstitute.org, and when it comes donations, there is a button on the website, but there is also a full page dedicated to Ukraine, and Ukraine-related donations at donations.eduinstitute.org.

Daniel Levine: Adrian Goretzki, founder and president of the Healthcare Education Institute in Poland. A thanks so much for your time today.

Adrian Goretzki: Again, Daniel, thank you for inviting me. I was very happy to share those stories with you.

This transcript has been edited for clarity and readability.

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