"In 2017, when I needed a transplant, there were practically no cases of cadaveric organ transplants, as well as bone marrow transplants in our country. There were single ‘related’ transplants (when a family member becomes an organ donor). Over the past few years, our system has shifted from a dead point," says Natalia Omelchuk, a Ukrainian woman with an 'Indian’ heart, deputy chairman of the National Movement For Transplantation NGO.
Over the past few years, Ukraine has made significant steps for the transplantation system developing. So, in 2020, three times more operations were carried out than in 2019. And in February 2021, one of the most large-scale operations took place, when a heart, liver and two kidneys were transplanted from a cadaveric donor - 4 people got a chance for a new life at once. However, there are nuances that prevent Ukrainian recipients from breathing deeply.
Natalia Omelchuk told 112ua.tv about the past and future of the transplantation system in Ukraine.
How Ukrainian transplantation "lives" today
I "got acquainted" with the Ukrainian system of transplantation in 2016. Then during pregnancy, due to a cold and a number of other factors, my heart increased 4 times (the organ weighed half a kilogram). Accordingly, a transplant was needed - a cadaveric transplantation, which could not be performed in Ukraine at that time. I joined the Ministry of Health's program "Treatment of Ukrainian citizens abroad", and I was sent to India. I was incredibly lucky, because after 4 days a donor heart was found. However, it is clear that not everyone is so lucky - I have acquaintances who have been waiting for organs for several years.
Today, such an operation can already be performed in Ukraine, and therefore, the system itself has been launched and the law on transplantation is in effect.
Already today, comparing my experience of transplantation in 2017 and what we have now, I must emphasize: the system is developing. I myself went this way, saw the scale of the foreign system and see our first steps: pilot transplant projects (in particular, 38 institutions take part in various bone marrow transplant operations), the launch of a number of online courses for doctors who want to become transplant coordinators etc.
Since January 1, 2021, a unified state information system for transplantation has been launched in test mode, through which the entire transplantation process is accompanied: both from a related and from a cadaveric donor. In simple words: the system coordinates the search for a donor and recipient, their compatibility. This is perhaps the most important shift for every Ukrainian recipient.
Our doctors do a huge amount of logistic work. Since each organ has its own lifespan, experts calculate how much time needs to be spent on the road - who is better to transfer (the organ to the recipient or the recipient to the donor). It is good when both the donor and the recipient are in the same clinic, but this happens quite rarely.
Several years ago, our NGO went to international football competitions. The whole team is people with transplanted organs. One organ was "presented" by patient’s mother, the second - by his sister, and the third - by his father. And despite the fact that these people really live like a "powder keg", they go in for sports, work, create their families. I had to go under the knife of a transplant surgeon again and learn to live with another organ.
And despite this, the main message of each of us is not to give up, to share our experience with others. After all, nothing gives strength and faith in oneself like the support of a person who has passed this path.
The only thing is that there are a large number of nuances, the importance of solving which lawmakers cannot understand.
When the hardest part is still not over
After the operation, an even more difficult period begins for each of the patients - rehabilitation. Even my Indian transplant doctor admitted this, noting that the operation itself is in fact not difficult, the postoperative period is much more difficult, when local doctors have to manage such patients.
The difficulty here is not only in the treatment, support of the donor organ, which, unfortunately, is lifelong for people like me, but also in the psychological aspect.
Just imagine what a person experiences when he lies down on the operating table and prepares for a cadaveric transplant. After the operation, it is necessary to organize a place for such patients where they would find support. It is very important to hear that everything will be fine, because hundreds of Ukrainians have already gone through the same thing, and some of them even several times.
In addition, there should be a stable supply of quality drugs after transplantation. We are talking about lifelong immunosuppression - drugs that prevent the rejection of the donor organ. They are very expensive, but some of them can be received free of charge under the health insurance program. But this jar of honey still has a fly in the ointment ... and more than one.
The provision of drugs in our country is still rather superficial. Not all regions receive them, and it is not known by what principle the drugs are distributed. There are also problems with the drugs themselves. Often these are generics, that is, substitutes - officials save on essential drugs.
For example, I was prescribed a German drug, but there is also a Ukrainian analogue. Which one do you think is included in the free drug list? The answer is obvious. And it's not that I don't want a Ukrainian drug. If in the hospital I was prescribed a German drug, I should only take it because my body "responded" to it. This is vital: even the brand and the manufacturer are important, because organ rejection can occur. Since this pathological process can even start after a microgram, which distinguishes the drug we need from the prescribed one, the transition from one drug to another should be strictly controlled by a transplant doctor.
The indifference of the authorities in the issue of allocating the necessary drugs is not the only thing that spoils all the achievements of Ukrainian transplantologists. It is worth talking about "black" transplantation. Namely - to debunk this myth, which pretty much spoils the life of the Ukrainian transplant system.
Is there a "black" transplantation in Ukraine?
It is worth distinguishing between killing for the purpose of extracting an organ that is not a transplant, and the process of transplantation itself - a huge chain of actions in which a significant number of people are involved. The announcement of the sale of organs that appear on the network does not indicate the risks of introducing organ transplantations in the country. They only talk about the difficult economic condition of the state.
In fact, it is impossible to acquire this organ and make a transplant so that law enforcement officers do not notice it. After all, the transplant operation cannot be performed in the basement. This is due both to the complexity of the operation itself (there are few doctors who are professional in this), and to the lifespan of the donor organ.
In the entire history of independent Ukraine, there has not been a single proven fact of the existence of so-called "black transplantologists" in the state. The myth of the existence of a "black" market is spread by inexperienced people or those who want a "hype". Unfortunately, such a resonance is bad for the whole transplant system in Ukraine.
Firstly, the transplant doctors themselves, who had suffered from information attacks, for a long time refused to carry out such operations without legislative regulation of the issue and guarantees of protection of their rights by the state. Secondly, the flow of false information is so deeply rooted in the minds of ordinary people that some of them still incorrectly interpret the very concepts of "transplantation" and "donation".
When I go to the hospital to receive my medications, I often hear from the nurses themselves that the launch of a transplantation is a bad thing. Even people with medical education so blindly believe in the very "black" transplantation that it is almost impossible to convince them. What kind of "culture of donation" can then be talked about in such a society?
How to become an organ donor
We need to conduct a huge education campaign on the topic of donation, so that people understand what it is and are not afraid to become donors. That is why our public organization is promoting this issue.
So far, the only format is to provide life-long consent for donation. Today, the Ministry of Health is doing several options for how citizens can consent to posthumous donation. This can be, for example, a written consent, which must then be provided to the transplant coordinator (a specialist who provides communication between all participants in transplantation), or the creation of an individual office in the system, which will significantly simplify this procedure.
By the way, if a person changes his mind, the application can be withdrawn. In the near future, after consent or disagreement with the donation, the person will be made an appropriate note in the passport or driver's license, and all data will be entered into the EGIS.
But one way or another, if a person has not made up his mind during his lifetime, the decision on donation after his death will be made by relatives, therefore only thanks to the popularization of the topic of donation there is a chance for an increase in positive decisions for recipients.
We urge people to talk in the family about their choice, about donation after death, so that the family knows and can calmly fulfill the will of their relatives if the inevitable happens. Only with the help of cadaveric transplantation can the scale of the problem of lack of donor organs in Ukraine be somehow narrowed down.
Unlike Minister Maxym Stepanov, it is difficult for me to say whether Ukraine will be able to become independent in the transplantation system in three years. The plans are ambitious, because there are gaps in legislation, in educational activities within the population, there are questions about the quality of our roads (which is a problem of the logistic aspect of transplantation). Also, do not forget about the impact of the pandemic - filled hospitals, overworked doctors and the risk of organ transplant from an infected donor (coronavirus, like any other infection, can be fatal for the recipient).
However, despite the significant achievements in the transplantation system, we should give it time, wait for the promised result, and only then judge.