Most Ukrainians who need a lifesaving organ transplant must travel abroad. That is improving, but systemic change is needed to help more people. From Zaborona.
Since becoming independent, Ukraine has been unable to create its own system for organ transplants. For decades, those in need have been forced to go abroad for life-saving organs. Since the mid-2010s, Belarus has become a sort of organ transplant hub. As a result of the current political situation in Belarus today, however, bilateral relations with Ukraine have seriously deteriorated. Diplomatic relations are tense, and air traffic between the two has been suspended. It’s practically impossible for Ukrainians to receive an organ there. Zaborona journalist Hanna Belovolchenko explains what people do when they need a transplant, why you can’t simply go to another country for a new heart or liver, and how a regional hospital has begun building a transplant system in Ukraine to the enthusiasm of a group doctors.
‘There Might Not Be a Next Time’
In March 2017, the lives of couple Olha Kredenets and Vasiliy Vyspyanskiy changed dramatically. Vasiliy, 42, had no vices, was athletic, and had a steady job in the transport industry – but then he suddenly found himself on dialysis, regularly undergoing a procedure to clean his blood after he was diagnosed with glomerulonephritis, a disease that causes the kidneys to shrink and stop working.
“It’s probably the consequence of a sore throat that he experienced and worked through in 2007,” Olha told Zaborona. “The disease is very insidious and develops slowly, and we, who rarely in our lives went to the doctor, didn’t even suspect that something like this could happen.”
Over the years, Vasiliy’s health worsened. He started losing weight. It got to the point where he would feel nauseous just from drinking water.
“For a long time, the hospital couldn’t figure out what the problem was. And when they diagnosed him, they said that we needed to find a donor. Without explanation [about how]. And we had no idea how to do that. Are you supposed to go out with a banner in Lviv, or what?” Olha recalls tearfully.
The couple lived in agony for the next six months. They traveled to Krakow in Poland for a second opinion in hopes that the diagnosis wouldn’t be confirmed. But alas, it was. Relations with the Lviv medical university, Olha recalls, were basically cold and apathetic: it was hard to talk to the doctors there, and explanations or practical advice were hard to come by. They only learned about a national health program to treat Ukrainians abroad from a fellow patient. The state budget will pay for operations in another country, once the patient assembles a thick file of documents. But where to go?
“I had to choose among a lot of options: Poland, Austria, India, Belarus, Turkey,” Olha explains. “In Poland they said we would never get to the head of their line, so they’d give us an organ only as a fifth choice. First their own citizens, then EU citizens, then those who have residency there, [or] a Polish Card [for non-citizens belonging to “the Polish Nation.”] Foreigners get it last, and it’s not guaranteed that the donor and recipient data will match.”
Considering the cost of treatment in faraway countries, the only option remaining was Belarus. Olha chose a hospital in Brest, because this city is the closest to Lviv. She spoke to doctors there herself. The clinic submitted a ready-made package of documents to the Ukrainian Ministry of Health. They confirmed that her husband could undergo the procedure, and set out some typical requirements: full prepayment in the amount of around 55,000 euros ($64,500). The funds were transferred in just a couple of days.
“We didn’t have any problems crossing the border. After the elections [in 2020], Belarus began to check very thoroughly, but never forbade transit. We had a great relationship with the hospital. You didn’t have to run around for doctors, like here, everything was clean and sterile – there was a feeling that you were in Austria somewhere,” Olha says.
Vasiliy joined the waiting list for kidney transplants in 2018. Every three months, he had to cross the border for his blood serum to be collected. These procedures, costing around 250 euros each time, were paid for out of pocket. But there was no way around it. The serum data provides a basis to say whether the donor matches or not. The serum itself is kept frozen. If a single serum collection appointment is skipped, the patient is removed from the transplant list.
“When we went to Belarus in May of this year, the border guards asked us more questions, demanded that we show them our marriage certificate – which we didn’t have on us. But we were let through in the end. I asked if I needed to bring along the certificate next time. I was told there may not be a next time – without any sort of explanation,” Olha says.
Going abroad for organs is a common story in Ukraine. If you need bone marrow, transplant lists in Turkey, Israel, Spain, and Germany are open. Need a heart, a liver, kidneys, or lungs? Then you have a straight road to Belarus or India. The cost of an organ transplant isn’t cheap. For example, for a kidney in Belarus today, you’ll have to pay over 62,000 euros, and for a heart, nearly 94,000 euros. In 1992, the Ukrainian government created a program to provide ordinary citizens with assistance in traveling abroad for transplant surgery. According to data collected by the Center for Social and Economic Research Ukraine (CASE), from 2010 to 2014, the state paid for the treatment of between 14 and 40 people a year. In 2015, 84 patients were treated, while in 2021 the government has earmarked expenditures for the treatment of 450 people, with the average cost of a treatment being set at about 75,000 euros. But this isn’t enough.
There are no official counts of how many Ukrainians need transplants, explains Yuriy Andreev, the chairman of the National Movement for Transplants NGO. Based on estimates by doctors around the country, the figure is likely to be around 5,000 operations a year.
India stopped providing transplants to Ukrainians in 2018 after a change of government. According to Andreev, when nationalists came to power there, Indians were given priority for transplants.
“When India stopped conducting these operations, there were 19 Ukrainians on their waiting lists. Eight of them were waiting in India itself. Over three years, six zinc coffins have returned to Ukraine instead of living people. They simply didn’t get their organs in time. Ukraine didn’t get its money back either,” Andreev says.
As a result, for Ukrainians who hope for help from the state to pay for organ transplants, neighboring Belarus has remained almost the only option. Organs can’t wait for a patient forever. For example, a heart needs to be transplanted within four hours – otherwise, the heart will simply be nonviable. That’s why when recipient and donor data match, automated systems give the organ to whichever recipient is closest. It’s realistic for Ukrainians to reach Belarus by car or by plane in this time frame.
As of June, 342 Ukrainians were on Belarusian waiting lists. Ukraine has paid the medical expenses of 18 of those patients. However, Ukrainian authorities halted air travel between the two countries on 26 May, after Belarus forced a Ryanair plane to land in Minsk, where police arrested opposition journalist Raman Pratasevich. Ukraine was following the EU’s lead, in order to “ensure the safety of flights” and to put pressure on the Lukashenka regime. However, the decision has had its consequences: those who have already left for organ transplants are stuck in Belarus.
Patients are often in a critical condition after a transplant, and their lives can be threatened by even the smallest infections. That’s why travel by land-based transport is risky. In order to get home after a liver transplant. Kharkiv resident Anna Kurylova had to turn to specialists in transporting critically ill people because she couldn’t handle the 20-hour bus ride home. She had to look for help from the Kharkiv regional government and local council members. The Ukrainian embassy in Belarus says that every situation is unique, which is why they only consult and help those who go to them directly, when these people can.
Ukrainians on the waiting lists still have to travel to Belarus every three months for tests – otherwise they’ll be removed from the lists, Andreev explains. But it’s an open question whether these people will be allowed across the border.
“The Ukrainian government needs to talk to the Belarusian authorities and receive guarantees that people on the waiting list can definitely have their operations, so as to avoid what happened in India,” Andreev says. “If there are no such guarantees, then it will become necessary to raise the question of bringing the people and the money back to Ukraine. You know, we don’t even know what sort of quota Belarus has for foreigners. They first provide organs to their citizens, and then everyone else. And there are people like Russians and Kazakhs getting treatment there. How do we know when it’ll be a Ukrainian’s turn?”
The Ukrainian Ministry of Health insists that the money will be returned if the operation isn’t performed or if the person receives an organ in a different country. But Andreev thinks Ukraine should have long ago stopped financing transplants in foreign countries, and should focus on building its own organ transplant system. Such an opportunity arose after 2019.
Help From the Provinces
Olha and Vasiliy had their hopes pinned on Belarus for a long time. But that situation changed two years ago.
On 25 December 2019, a difficult conversation took place in a small regional hospital in the Volyn region, in the town of Kovel. Not long before, a man with a severe, traumatic brain injury was brought in. It wasn’t possible to save him; medical personnel declared him brain dead. Now, the mercy of relatives and the carefully chosen words of doctors would decide whether the deceased man’s organs would be able to save the lives of others. In Ukraine, when it comes to organ donors, there’s a presumption that consent is not given. By default, a person is assumed to have not agreed to be an organ donor. Only relatives have the right to change that situation. And on Christmas Day in Kovel, they did that. Only four hours after the documents had been signed, the donor’s body lay on an operating table, and three patients received his organs: two received kidneys, one a heart. It was the first heart transplant conducted in Ukraine in 15 years.
This sensational, multiple organ transplant was only possible thanks to the dedication of local doctors. Throughout Ukraine’s history as an independent nation, organ transplants have been something of a fantasy, even though there is no law forbidding them.
“The problem lay in the fact that in the law [adopted in 1999] there was no procedure for transplants,” explains the head of the Transplant Center at Lviv Clinical Emergency Care Hospital, Maksym Ovechko. “As a result, any mistake in the patient’s medical history could be interpreted as a violation of this law. This threatened doctors with criminal responsibility, which is why they were scared to do this.” [Ed. note: Old patient records in Ukraine are often incomplete, poorly filled out and might contain false information. If a doctor uses a faulty medical record in a transplant surgery and something goes wrong, they could face jail time – even if the doctor had nothing to do with the original records].
Yet this team of Kovel medical professionals “were seized with the idea to do something global in a regional hospital.” They wanted to do it – and did, Ovechko says.
And the moment they transplanted that first kidney from an unrelated donor, it got easier. In the following five months, the team carried out nine kidney transplants and two heart transplants. And in 2020, it got easier still, when on 29 December 2019, President Volodymyr Zelenskiy signed into law amendments clarifying the rules for organ transplants.
Most of the medical professionals from that Kovel team now work in Lviv. The city’s mayor, Andriy Sadovyi, invited them to open a transplant center on the grounds of the emergency hospital. There, Vasiliy got his new kidney. He was first on the waiting list the moment Ukraine started performing organ transplants. After a year and a half, he had his operation.
“I was amazed at the level of the doctors, their communication skills, their manner,” Olha says. “Maksym Ovechko called us on 31 May 2021, at 8:20 p.m. And within an hour we were in an ambulance, and my husband had his operation at one in the morning. The team answered all our questions, they were always smiling – we couldn’t even believe we were in a Ukrainian clinic.”
Today, Vasiliy is undergoing rehabilitation. He’s still required to take a host of medications so that his body does not reject the donated organ. But thanks to Ukrainian doctors, he’ll live.
Death and Consent
The law adopted in 2019 prescribes the procedure for organ transplants. First, doctors have to establish that brain death has occurred with the help of specialized equipment, if the hospital has access to it. Then they check the Unified State Information System for Organ and Tissue Transplantation to see if the person had agreed to be an organ donor. If they did, then the transplantation procedure can be carried out on a suitable patient. If not, the doctor can ask for consent from the deceased’s relatives, though the doctor isn’t obliged to. And it’s those two factors – ascertaining brain death and obtaining the family’s consent – that specialists see as potential brakes on the development of Ukraine’s organ transplant system.
“Eighty percent of hospitals simply do not have access to the equipment that can help confirm brain death. They would need to buy it using local budgetary funds,” Andreev explains, noting that this is often out of reach. The necessary equipment costs anywhere from $7,500 to $11,000.
As for getting a relative’s consent for the transplant, according to Ovechko, it’s easier for a doctor to conduct 10 operations than to speak once to the family of the deceased. The law states that consent has to be agreed through a transplant coordinator – a medical specialist who not only has to talk to the relatives of the potential donor, but oversee the whole process as well.
“These specialists don’t exist in 90% of hospitals. And in those that do have them, the transplant coordinator often cannot explain all the nuances of the case,” Ovechko says. “Then doctors from different specialties join the conversation, in order to explain from a scientific point of view what brain death is and why it’s equivalent to biological death. But people are suffering from a grave loss in those minutes. And it’s hard to explain to them that a big gesture can be made – to save two or three other patients. Many just refuse, [while] some react aggressively and almost accuse us of selling organs. Our society is not quite ready for organ donation.”
This all adds up to a colossal deficit in organs from posthumous donors, Ovechko continues. The current demand for kidneys is 1,500 a year, but in the first six months of 2021, Ukraine conducted only 120 kidney transplants. There was a need for 500 livers, but only 20 were transplanted. At least 400 hearts were needed, but only a few dozen transplants have been done.
Ukraine could be transplant-independent in five years, Ovechko believes, based on the increasing rate at which hospitals are performing transplants, the growth of specialists in this field, and technological progress.
Lviv’s young transplant center became No. 2 in Ukraine in terms of the number of operations performed in the first half of this year: they transplanted 26 kidneys, three hearts, and a single liver. Thirty hospitals in Ukraine have now been licensed to transplant organs, but in reality, only a dozen actually perform the procedures. By comparison, 30 clinics in Germany specialize just in kidney transplants.
The European Union is working on a system of unified transplant lists, and some European countries already cooperate on exchanging donor information. Andreev believes that Ukraine could sign a similar agreement with its neighbors. However, there are still barriers to overcome.
“In Moldova, they conduct kidney transplants, but they don’t have any heart or lung specialists. They also travel to Belarus for bone marrow. Russia also doesn’t conduct all the operations and doesn’t cover its own needs,” Andreev says.
Under these conditions, Ukraine has little choice other than to develop its own organ transplant system. And this can be done if there are trained doctors, a system of organ donation, good financing, and political will.
“For some reason, we found billions of hryvnias for roads [in a national COVID relief program for 2021], but we didn’t find money for equipment to confirm brain death. Meanwhile, thousands of people wait for their operations,” Andreev says. “Organ transplantation is a chance you have to wait for. But not everyone has the time.”
Hanna Belovolchenko writes for the Ukrainian news site Zaborona, where this article originally appeared. Transitions has edited the text for length and style.
Produced with the support of the Russian Language News Exchange.