New transplant law: The first important step
On May 17, the Verkhovna Rada passed a law on transplantation. According to statistics, due to the shortage of donor organs and the lack of operations - more than 3,000 people die every year in Ukraine. Of the several thousand, only dozens manage to achieve the operation. For all these people, the introduction of this law is a chance for salvation.
But in the meantime, to enforce the law, a number of complex manipulations have to be performed. The fact is that transplantation is not just an operation, it is a rather complex mechanism that needs to be carefully adjusted.
Yuri Andreev, the leader of the public organization "For Transplantation", will tell us the history of the bill, what is needed for its mechanism to start functioning fully when it starts working, and about the main problems related to this law.
Yuri, tell us, what prompted, specifically you, to dedicate yourself to the problem of transplantation? What moment was decisive in the creation of the public organization " For Transplantation"?
In 2016, I was diagnosed with aplastic anemia. This is a rare pathology of the circulatory system, when blood cells are not produced in sufficient quantities, because the immune system kills them faster than they are produced by the bone marrow. The causes of this disease, if it is not a genetic but an acquired disease, are unknown.
Then I had to feel all the "charms" of Ukrainian medicine: the wrong diagnosis, the attitude of doctors to the patient, the state of the diagnostic base. My bride at the time ran around all the labs with test tubes and flasks. But I was lucky several times then. The first - when after the Kiev city hospital, got to the Kiev regional. Here all the examinations had to be repeated. Here he was diagnosed with aplastic anemia. The second time I was lucky, I managed to raise money for my treatment. The matter is that the preparation which was necessary for me - Atgam - at that time cost 90 thousand hryvnias for packing from 5 vials of substance. I needed six such packs (30 vials) for one course of treatment. This is in addition to maintenance therapy. If it weren’t for those people who dropped on the card already wife (we got married during my stay in the hospital) for 5, 10, 100 hryvnia, I’m sure I would not have been long ago. The third time I was lucky was when my body responded to medication. After all, there are cases when there is no reaction and then it is necessary to do a bone marrow transplant.
I have long been accustomed to my diagnosis, to the "title" of a disabled person of group 2. And after the hospital I faced another problem - providing, like me, the necessary medication. The fact is that I still take immunosuppressants every day. And by law I have to get them for free prescriptions. But in fact, to achieve this, I had several months to throw letters from deputies of the City Council and Parliament, the city health department.
Initially, my wife and I told on social media how we got free medicine. They started writing and calling us from all over Ukraine. We showed everyone the Resolutions of the Cabinet of Ministers, orders of the Ministry of Health and talked about how to write inquiries. In the intervals between these tips, I continued to go to the hospital, taking systematic blood tests.
Once I saw a post on social networks of a girl who was raising money for an operation for her husband. He was also treated at the regional hospital, as I was. He was also lying in the same ward as me. When he once again came to the control of blood parameters, went to the guy in the ward, met. He learned from his wife that they have been waiting for about six months for the state to pay for treatment abroad. He began to get to the bottom of it. I learned that there is a state program, money is allocated for it from the budget. The state pays for treatment abroad when such treatment is not possible in Ukraine. But at that point - and it was July 2017 - the money for the program ran out. And none of the seriously ill could pay for treatment abroad.
Since I have many years of public activity behind me, I knew many deputies: many of them were with me at the Revolution of Dignity. I started writing to them, telling them about the guy and his problem. And there were more and more patients in the hospital who also had to go abroad for a bone marrow transplant.
Besides, they were all at such a limit that they were ready for anything. And we somehow unanimously decided that we should go ask for money for the state program.
As now, I remember, the first action, which was loud on all TV channels, took place on July 12, 2017. When we started talking about this problem, the same patients from all over Ukraine started contacting us. Some were waiting for money to go for a heart transplant, some - kidneys, liver, bone marrow. And every time we didn’t know how to imagine ourselves. We were just patients.
At the end of August, he and his wife went and registered a public organization. We thought for a long time about the name and the idea in general. But after all these stories that we were told, after all the actions to send people abroad, we realized that our country will never have enough money to send abroad for the treatment of all those who need it.
Therefore, when we wrote the charter, when we thought about our goals, we decided that the main thing is to launch transplantology in Ukraine. All the patients who were with us at all the events at the time supported us and also wanted to join the organization.
This is how the National Movement for Transplantation came into being. Now I think that my disease was given to me for this very purpose - to develop the field of medicine "transplantation". Somehow I was even told that of all, I am the most interested person to have a transplant in Ukraine.
Actually, I do not hide it. As I realize - my diagnosis did not go away, the disease did not go away. She is asleep, I am learning to live so as not to disturb her. However, if I need a bone marrow transplant tomorrow, I want to be sure that doctors in my country can save me. So yes, transplantation in Ukraine is a vital necessity for me. Therefore, I will develop it in any case.
Regarding the law on transplantation. About 2 years ago, deputies were already considering the law on transplantation, but did not come to a consensus. Most motivated this by the fact that the country is at war, and when many people die and go missing - it is wrong to pass this law. To date, hostilities in the country have not stopped, but many deputies have changed their minds. In your opinion, what helped or made you reconsider your views?
Yes, you are right, the law has been in parliament since 2015. After the first reading, it was tucked away in a box and forgotten. Because there were many controversial points. Regarding the fear of starting a transplant during the war, including. I think that the events of a year ago also played a role. If before the word "transplant" was uttered in a whisper, no one has ever seen a person with a transplanted organ, except for a transplant doctor, today there are more and more people who talk about their problem every day. The patients stopped being silent. See how the treatment program was previously funded abroad. Such small sums were allocated not so much because of the greed of officials, but because of the ignorance of patients themselves that they can transplant a kidney and not be chained to hemodialysis. It was not common to say that a person with kidney failure, that he could go to Minsk for state money and have a corpse kidney transplant. But then there was the story of Vika Gongalo, Yula Sokoltsova. People cried when they looked at these girls. When my patients and I went to the Cabinet, the next day I got a call from a girl who had been on hemodialysis for 14 years. And no one told her she could have a kidney transplant. Now her treatment has already been paid for from the state budget, she is standing in line with the Belarusians and waiting for a suitable body.
Of course, when the Ministry of Health began to receive dozens of applications every day, and everyone is asking for money for treatment abroad, the pennies that have always been allocated are no longer enough. Just think - 608 million for 2017! This is the amount that the Ministry of Health transferred to the accounts of foreign clinics. How many people did we save for this money? Slightly more than 200. And such patients across the country - more than five thousand! It is not economically viable to send everyone abroad.
I think that’s why they remembered the law, which has long been dusty in the bedside table. It has finally come to the attention of officials that not so much money can be spent abroad. Because for the same amount in Ukraine we will save three times more people. This is the image of the country, this is the saving of budget funds, which our officials like to talk about.
As far as we all remember, about 1.5-2 years ago there was a wave of video appeals from people in need of transplants. There were appeals to the government to pass the necessary law. They were children, teenagers, and adults. Unfortunately, many could not wait for help. At that time, these video appeals were regularly shown on many TV channels. Do you think that these people managed to reach our government, to make a certain contribution to the adoption of this law?
I think that’s where it all started with such video appeals. Constant stories about the problem of such patients accumulated the interest of society, which was trying to understand why our country can not save the seriously ill. People became interested. It became harder to keep the problem quiet. Parliamentarians and the Cabinet of Ministers had to pay attention to the seriously ill, had to allocate more money, had to remember the law and that it is time to create conditions in Ukraine for the development of transplantation.
The law has been passed, but it is not enough. As far as we know, now it takes a lot of money, a lot of effort to build this complex mechanism, to prescribe many points in more detail. Will they not let everyone run wild this time as well? (As is often the case with new laws) .Please explain why you think so?
Many patients have now rallied. We realize that in 1 day the transplant system will not be configured. We also understand that funding for transplantation should be at the same level as the overseas treatment program. That’s the minimum.
We also realize that it is necessary to prepare the entire regulatory framework. But I am sure that the public - patients and their relatives - will not let the executive forget that the law must be obeyed. More people already know their rights, find like-minded people and see support from the same patients. Therefore, public control will be.
It seems to some that we are too critical of the Ministry of Health. But we supported their position on the transplant law. We also constantly repeat that we are ready to help implement the law. We just need to stop thinking about politics and go down to earth, to the Ukrainian realities. Our organization now has a register of recipients. We are still filling it, more and more people are declaring themselves every day. And we are, of course, ready to pass this data to the executive branch. Because without a register of recipients, transplantation will not work. And if the regional departments and the Ministry of Health are mired in bureaucratic paperwork, then we, as a public organization, can collect data on those who need a transplant, much faster. And more reliable, which is not unimportant. After all, we do not just collect statistics in the areas, but communicate personally with each patient…
Friends, on the example of Yuri, we can see that "the disease does not choose", tomorrow it can come to everyone, but most importantly, do not "give up" and fight for their right to a healthy life. And our task today is to continue to ensure that the process does not stop at the current stage, but is brought to the final point.
Author Anna Koznyuk
But in the meantime, to enforce the law, a number of complex manipulations have to be performed. The fact is that transplantation is not just an operation, it is a rather complex mechanism that needs to be carefully adjusted.
Yuri Andreev, the leader of the public organization "For Transplantation", will tell us the history of the bill, what is needed for its mechanism to start functioning fully when it starts working, and about the main problems related to this law.
Yuri, tell us, what prompted, specifically you, to dedicate yourself to the problem of transplantation? What moment was decisive in the creation of the public organization " For Transplantation"?
In 2016, I was diagnosed with aplastic anemia. This is a rare pathology of the circulatory system, when blood cells are not produced in sufficient quantities, because the immune system kills them faster than they are produced by the bone marrow. The causes of this disease, if it is not a genetic but an acquired disease, are unknown.
Then I had to feel all the "charms" of Ukrainian medicine: the wrong diagnosis, the attitude of doctors to the patient, the state of the diagnostic base. My bride at the time ran around all the labs with test tubes and flasks. But I was lucky several times then. The first - when after the Kiev city hospital, got to the Kiev regional. Here all the examinations had to be repeated. Here he was diagnosed with aplastic anemia. The second time I was lucky, I managed to raise money for my treatment. The matter is that the preparation which was necessary for me - Atgam - at that time cost 90 thousand hryvnias for packing from 5 vials of substance. I needed six such packs (30 vials) for one course of treatment. This is in addition to maintenance therapy. If it weren’t for those people who dropped on the card already wife (we got married during my stay in the hospital) for 5, 10, 100 hryvnia, I’m sure I would not have been long ago. The third time I was lucky was when my body responded to medication. After all, there are cases when there is no reaction and then it is necessary to do a bone marrow transplant.
I have long been accustomed to my diagnosis, to the "title" of a disabled person of group 2. And after the hospital I faced another problem - providing, like me, the necessary medication. The fact is that I still take immunosuppressants every day. And by law I have to get them for free prescriptions. But in fact, to achieve this, I had several months to throw letters from deputies of the City Council and Parliament, the city health department.
Initially, my wife and I told on social media how we got free medicine. They started writing and calling us from all over Ukraine. We showed everyone the Resolutions of the Cabinet of Ministers, orders of the Ministry of Health and talked about how to write inquiries. In the intervals between these tips, I continued to go to the hospital, taking systematic blood tests.
Once I saw a post on social networks of a girl who was raising money for an operation for her husband. He was also treated at the regional hospital, as I was. He was also lying in the same ward as me. When he once again came to the control of blood parameters, went to the guy in the ward, met. He learned from his wife that they have been waiting for about six months for the state to pay for treatment abroad. He began to get to the bottom of it. I learned that there is a state program, money is allocated for it from the budget. The state pays for treatment abroad when such treatment is not possible in Ukraine. But at that point - and it was July 2017 - the money for the program ran out. And none of the seriously ill could pay for treatment abroad.
Since I have many years of public activity behind me, I knew many deputies: many of them were with me at the Revolution of Dignity. I started writing to them, telling them about the guy and his problem. And there were more and more patients in the hospital who also had to go abroad for a bone marrow transplant.
Besides, they were all at such a limit that they were ready for anything. And we somehow unanimously decided that we should go ask for money for the state program.
As now, I remember, the first action, which was loud on all TV channels, took place on July 12, 2017. When we started talking about this problem, the same patients from all over Ukraine started contacting us. Some were waiting for money to go for a heart transplant, some - kidneys, liver, bone marrow. And every time we didn’t know how to imagine ourselves. We were just patients.
At the end of August, he and his wife went and registered a public organization. We thought for a long time about the name and the idea in general. But after all these stories that we were told, after all the actions to send people abroad, we realized that our country will never have enough money to send abroad for the treatment of all those who need it.
Therefore, when we wrote the charter, when we thought about our goals, we decided that the main thing is to launch transplantology in Ukraine. All the patients who were with us at all the events at the time supported us and also wanted to join the organization.
This is how the National Movement for Transplantation came into being. Now I think that my disease was given to me for this very purpose - to develop the field of medicine "transplantation". Somehow I was even told that of all, I am the most interested person to have a transplant in Ukraine.
Actually, I do not hide it. As I realize - my diagnosis did not go away, the disease did not go away. She is asleep, I am learning to live so as not to disturb her. However, if I need a bone marrow transplant tomorrow, I want to be sure that doctors in my country can save me. So yes, transplantation in Ukraine is a vital necessity for me. Therefore, I will develop it in any case.
Regarding the law on transplantation. About 2 years ago, deputies were already considering the law on transplantation, but did not come to a consensus. Most motivated this by the fact that the country is at war, and when many people die and go missing - it is wrong to pass this law. To date, hostilities in the country have not stopped, but many deputies have changed their minds. In your opinion, what helped or made you reconsider your views?
Yes, you are right, the law has been in parliament since 2015. After the first reading, it was tucked away in a box and forgotten. Because there were many controversial points. Regarding the fear of starting a transplant during the war, including. I think that the events of a year ago also played a role. If before the word "transplant" was uttered in a whisper, no one has ever seen a person with a transplanted organ, except for a transplant doctor, today there are more and more people who talk about their problem every day. The patients stopped being silent. See how the treatment program was previously funded abroad. Such small sums were allocated not so much because of the greed of officials, but because of the ignorance of patients themselves that they can transplant a kidney and not be chained to hemodialysis. It was not common to say that a person with kidney failure, that he could go to Minsk for state money and have a corpse kidney transplant. But then there was the story of Vika Gongalo, Yula Sokoltsova. People cried when they looked at these girls. When my patients and I went to the Cabinet, the next day I got a call from a girl who had been on hemodialysis for 14 years. And no one told her she could have a kidney transplant. Now her treatment has already been paid for from the state budget, she is standing in line with the Belarusians and waiting for a suitable body.
Of course, when the Ministry of Health began to receive dozens of applications every day, and everyone is asking for money for treatment abroad, the pennies that have always been allocated are no longer enough. Just think - 608 million for 2017! This is the amount that the Ministry of Health transferred to the accounts of foreign clinics. How many people did we save for this money? Slightly more than 200. And such patients across the country - more than five thousand! It is not economically viable to send everyone abroad.
I think that’s why they remembered the law, which has long been dusty in the bedside table. It has finally come to the attention of officials that not so much money can be spent abroad. Because for the same amount in Ukraine we will save three times more people. This is the image of the country, this is the saving of budget funds, which our officials like to talk about.
As far as we all remember, about 1.5-2 years ago there was a wave of video appeals from people in need of transplants. There were appeals to the government to pass the necessary law. They were children, teenagers, and adults. Unfortunately, many could not wait for help. At that time, these video appeals were regularly shown on many TV channels. Do you think that these people managed to reach our government, to make a certain contribution to the adoption of this law?
I think that’s where it all started with such video appeals. Constant stories about the problem of such patients accumulated the interest of society, which was trying to understand why our country can not save the seriously ill. People became interested. It became harder to keep the problem quiet. Parliamentarians and the Cabinet of Ministers had to pay attention to the seriously ill, had to allocate more money, had to remember the law and that it is time to create conditions in Ukraine for the development of transplantation.
The law has been passed, but it is not enough. As far as we know, now it takes a lot of money, a lot of effort to build this complex mechanism, to prescribe many points in more detail. Will they not let everyone run wild this time as well? (As is often the case with new laws) .Please explain why you think so?
Many patients have now rallied. We realize that in 1 day the transplant system will not be configured. We also understand that funding for transplantation should be at the same level as the overseas treatment program. That’s the minimum.
We also realize that it is necessary to prepare the entire regulatory framework. But I am sure that the public - patients and their relatives - will not let the executive forget that the law must be obeyed. More people already know their rights, find like-minded people and see support from the same patients. Therefore, public control will be.
It seems to some that we are too critical of the Ministry of Health. But we supported their position on the transplant law. We also constantly repeat that we are ready to help implement the law. We just need to stop thinking about politics and go down to earth, to the Ukrainian realities. Our organization now has a register of recipients. We are still filling it, more and more people are declaring themselves every day. And we are, of course, ready to pass this data to the executive branch. Because without a register of recipients, transplantation will not work. And if the regional departments and the Ministry of Health are mired in bureaucratic paperwork, then we, as a public organization, can collect data on those who need a transplant, much faster. And more reliable, which is not unimportant. After all, we do not just collect statistics in the areas, but communicate personally with each patient…
Friends, on the example of Yuri, we can see that "the disease does not choose", tomorrow it can come to everyone, but most importantly, do not "give up" and fight for their right to a healthy life. And our task today is to continue to ensure that the process does not stop at the current stage, but is brought to the final point.
Author Anna Koznyuk