[000:00:00;00] understood that people continue to get sick and need help this year we have already performed 14 transplantations and with preliminary calculations and with the list of patients who are already on the register and at certain stages are being prepared for transplantation i think that we will perform even more transplantations than the year before during the war year, last year, every year in ukraine, up to 150 children needed allogeneic bone marrow transplantation, and 60-70% of them did not have a compatible family donor , again, you and i were happy that finally such children do not have to be sent abroad and that's it can it be done in ukraine, what is the actual situation now? are you trying to talk about the fact that it is more or less safe ? yes, and you are still trying to carry out transplantation here in ukraine, but are there

still patients whom you are trying to send abroad or those who independently maybe they are asking you that we don't want to stay here, we think it's safer to go abroad , or have you cooperated with anyone in the past year , and we had two patients go for treatment abroad, two patients went to... relapses after a lung presentation for card therapy, which was not available in ukraine even before the war, we are working in this direction, but it is high-tech , expensive therapy, and our european partners within the saved ukraine program accepted these patients, e.e., with those patients with whom i personally encountered as for the children, it’s more. those who even had indications for transplantation, no one went. i know that patients from the regions who, for example, do not come

to us, so they leave because their parents know about this option. i also prove to them that they have an option receive treatment in okhmatdit or go to a foreign clinic for free treatment - some patients, for example, have already returned from abroad and are being observed here. with a home when, for example, dad is in the armed forces of ukraine and cannot be around, etc., etc. they are taken there as quickly as possible to european clinics for treatment, because children are taken not only by our european

children, but also in the united states and great britain . that is, almost all the world's leading clinics have joined in helping our children . let's talk in more detail about the transplant itself, because maybe our viewers will be surprised that many of us have valuable unique cells that are able to form new cells and regenerate, yes, oleksandr, yes , bone marrow donation is regenerative donation and the registration process in itself does not guarantee that you will potentially become a donor, there are many factors that influence this and that they converge into one and you become directly suitable as a brain donor to the patient, mr. oleksandr , please tell me about that

are there any direct risks for both the health of the donor and the health of the recipient after a bone marrow transplant in relation to the donor, the donor is a priori a healthy person and all donation is aimed at not harming the donor in the minimum e-e the donor has minimal risks and, for example, the development of some complications, well, typical complications, which can be osalgin, pain in the bones. when the stimulation of stem cells is carried out so that they go into the peripheral blood and the collection of cells and mechanical traumatization of the skin of the soft tissues of the buttocks, when the collection is directly responsible bones, in principle, and all the discomforts that the donor may feel in relation to the recipient, these are big risks, because in the essence

of our procedure, if it is leukemia, we add either total body irradiation or high-dose radiation chemotherapy, which destroys all blood cells, including the immune system, because of this , the patient is in the old box a-a will receive accompanying therapy and already after the preparatory stage a-a we cannot retreat back, just like what happened with this girl or the bone marrow it will not recover, we destroyed it, and a bone marrow transplant can help restore hematopoiesis, the immune system and save lives during the war and in our almost three-year experience, there were various situations, for example, during the war 12, two days before the transplant, the donor was a skip-pro and the register wrote to us that there were complications during the procedure and in connection with the complication they could not, uh, base

us on the collection of cells, although the patient had already received the preparatory stage. well, then we already accepted urgent the decision of how to carry out a transplant in the absence of a transplant, because the logistical process is multifactorial and on average takes three months from the start of donor activation, communication with the donor , examination of the donor and direct collection of stem cells or bone marrow. then we were able to get out of the situation and did the first transplant in ukraine from a native uncle ah it's very rare when a native uncle is partially compatible it's more of an exception due to the fact that they are er not citizens but um er from azerbaijan and

for that, my uncle came up to 60 and we quickly examined him in a week in our clinic, we did a transplant from uh uncle because his parents were unavailable, mr. oleksandr, one more question, this is quite important , if you can find a donor abroad quickly , you just need to use the right one program, only a private registry works in our country, which, unfortunately, cannot fully satisfy all those who need it, and there is information that back in 2018 , a czech company provided prometheus software to the ministry of health of ukraine and this software enables to create a register of donors who are necessary for bone marrow transplantation for patients with blood cancer, and at that time training was even conducted for representatives of the ministry of health and they were issued the appropriate certificates, but to today in our country there is no

state registry of donors, you don't know why this is happening, well, first of all, this is a direct question for the ministry of health or the ministry of health in our country forms the policy in the field of health care regarding the existing register, i want to give feedback, install it. it is not private , it is a public organization, a public initiative . and regarding the primitels program, you need to understand the primitiveness of the program. e-e accumulates information and e-e searches for a compatible donor according to a certain algorithm, no more, no less, there are still many logistical and financial costs, for example, where to type donors in ukraine, now, for example , the ukrainian registry of brain donors types them in germany, and the price of typing is 35 euros

at the moment, the cost of typing in ukraine with the same resolution is many times more expensive, that is, which we will take based on our reasoning as citizens, how we will make decisions to make it more expensive in ukraine or cheaper in germany why the prices of reagents are more expensive, the volume of material that passes through the laboratory in germany is more, that is, certain steps must be taken to lower the price, but to reach this price, because we do not produce these reagents, we still cannot, if it is state funding, then it goes to the inspection the body and asks why and , for example, how will the state pay abroad in foreign currency, the mechanism does not exist, or the next inspection body comes and asks why well, for example, there is mr. ivan and why do you

do it in ukraine, but others are more expensive, for example for 100 euros, ivan does ap in germany for 35. well, how does our structure in the state work , poor mr. ivan, in the best case, will be unsubscribed for a long time, and in the worst case, he will go to court, and this must be understood when building a system that we outsource what we are doing here is not the goal of just making a register, there are three computers, the promytails program, a state sign, and all this must be effective, and the register is again the same as how we will involve donors, a donor is a volunteer, he wants to become a donor, whether or not it is on you can't influence it. well, it will be possible. well, we can't

let's send them, for example, through informational applications, er, well, you can send them to force legislation, which you can't. that is, this is a social information project aimed at explaining to people that it is safe for people to become, but at the same time, this will also not be solved , plus it is necessary to understand economically the ground is the war in the country. and for example, if we don't say that now we are talking about it, you and i talked about it a year ago and talked about the fact that it would be very good if there was a state register and the state was interested in order for such a donor to appear now, of course, we can talk about the fact that now is not the time to talk about it because there is a war in the country , but i want it to be supported and at the state level, you understand about yourself. i want to add that he has it will be good if there will be mechanisms for its adequate functioning, but i gave two examples that will block its funding and, as always, will not solve the problem and they will look for the guilty and who is this person who will take

responsibility, who will understand that a priori he has a solution, roughly speaking, if not there is no way to change the processes of the faithful, what can you do, it is a guilty shot, you can do it, you can see. well, then we have to give mechanisms to create mechanisms , and then we do not create registers. the register will be the same as we had for more than 10 years, it was there and that transplantation was not done, that is, we need to provide effective mechanisms again , the registration forms of the registers are international , they are in english, if it is a state register, then all the forms must be translated into ukrainian . who will do it? who will finance it? the doctors will have to fill out two forms in ukrainian and in english well, okay, we will do it, but it is also time and resources, mr. oleksandr, in fact, next we will talk about donors, how to become a donor and whether it is necessary to pay for it and who pays for it, but we will already talk with

the next to our guests and i want to thank you for your work , for the fact that you continue to save both children and adults during the war, thank you, thank you, thank you for covering this important social topic, glory to ukraine glory to the heroes, we were not in touch oleksandr liksya, head of the department bone marrow transplants of the okhmatdyt national children's specialized hospital and we are moving on. a year ago, about two and a half thousand people needed bone marrow transplants, of which 750 were allogeneic, that is , about 41 million potential donors were registered from donors around the world. all these people voluntarily entered their data into registers in our country, only 8,780 ukrainians are registered in the register of bone marrow donors, while it is important to understand that a ukrainian has the highest chances of approaching another

ukrainian for salvation. the fact is that for transplants, you need to find a person with the right dna, looking for donors in registries around the world, they find a genetic twin. far from everyone, the farther away the country is from us, the less chance there is to find a person with a dna match . that is why it is important to increase the ukrainian donor registry, if there are one million donors, most patients will find dna - a couple and will be cured of cancer, this is the reason why there are so few donors . to our broadcast, congratulations, congratulations, mr. roman, we just talked with mr. oleksandr at the beginning of our program. we saw the story of how our editor submitted an application to replenish the love of potential bone marrow donors

, tell us. after the person came, he submitted all his data, passed here is this test, what happens to that envelope, e.e., for example , from our editor natalya, where will this envelope go and can she really get into the bone marrow donor register with a very high probability that she will be enrolled in the registry, her envelope will travel to the tissue typing laboratory in the city of dresden and after we receive her dna results, it will take approximately two months, er, this data will be entered into our software and she will receive er confirmation of her

e-mail address congratulations you are in the register your dna analysis was successful and you just have to wait mr. roman as far as i understand natalya visited the private register of bone marrow donors because there is none in our country of the state, and the question arises, do those who want to pay to get into the donor register? oleksandr corrected you. i will also correct you again. in ukraine, there is no private register of bone marrow donors . in ukraine, there is, as of today, a non- state register of bone marrow donors. brain on the basis of a charitable organization , a charitable foundation

, a ukrainian register of bone marrow donors, this is a non-profit organization, it does not belong to any person, therefore it is not private, therefore, eh, more about registration, eh registration in the registry for those who want to be between the ages of 18 and 35 is absolutely free for those between the ages of 35 and 45 we have done by analogy with the dutch match registry and the american nmdp registry they have the following options for people in the older category registration is offered only with a charitable contribution which covers the registration of one number. the money spent by the registry on the registration of one donor is approximately 35 euros . please tell me whether blood cancer patients who are looking for a donor need to pay for searches in the registry. of course, no, the patients did not pay. never and well, probably. in no country, including ours, they didn’t pay if a person who watches our program decides that he wants to become a donor , what needs to be done for this, for example, without

going to a donor center, but simply at home, he needs to open google and type bone marrow donor, he er will get exclusively to our site and er it is a jeweler krapka.org she will read the information we have stored there about bone marrow donation itself why it is important how everything happens she will be able to go through online registration and order a test for herself set which will come to her by ukrposhta or nova poshta, she can choose to receive it at home or at work or in the car or directly, for example, at a branch of the nova poshta branch . everything is back to us or she can get a test kit and

do this test in a week or two we have people who kept the test kits but returned them there after a year or two again it can be done by any person what is selection criteria for donors are certain contraindications medical contraindications they are all highlighted during e-e online registration to receive a set test a person reads yes no no no no ok i have none of this and she can continue to receive a set somewhere well, you can at least it is possible to name several criteria for these, it is possible to name it there, age, it is possible, some diseases that you can name now on our air, the most common diseases that make it impossible to register as potential bone marrow donors, this is hepatitis b and c

, but hepatitis a is a so-called disease jaundice or botkin's disease is not a contraindication to registration e.e. rheumatoid e.e. chronic rheumatoid diseases hiv aids e.e. is a contraindication a-e serious mental illness alcoholism e.e. systematic use of narcotic substances well, these are the main things and there are also more there are serious defects of the heart and other organs, there is a rather large list that just needs to be reviewed, but if in general a person feels healthy, for the most part everything is okay , are there any risks for the donor? i mean the non-medical aspects, because that is what we are talking about spoke with oleksandr lisika and i am talking specifically about the leakage of personal data from the registry, for example, it is theoretically possible, since

in our country we see leaks of personal data from banks, the tax service , hospitals, other public institutions, private structures and other organizations more safer, more attention is paid to this and actually we have also chosen for ourselves such an approach that we spend a lot of time and a lot of effort to store this personal data as best as possible and what can to talk about what we are doing well , this is for five years of our work, and we have been working for five years in ukraine, there was not a single complaint and not a single report about the leakage of personal data and literally such a short question . please tell me if it is a match is found what happens next if there is a match, we inform you since we, er

, the search for a donor is initiated by the medical institution , we receive the patient's data for the patients, we do not see it, we comment exclusively with the doctors of the transplantation department if a match has occurred we inform the department, we discuss it, and if the department says ok, because the final approval of the donor is the prerogative of the department, they say ok, then the registry contacts the donor and says, congratulations , there is a match, there is a person who needs your help, they need a bone marrow transplant and can you help, have you changed your mind and here the situation can develop in different ways because when a person enters the registry , they can call because of this

month year 5-10-15 yes that is, it is enough long time frames, first of all, the registry may not call and find this person, there is such a percentage, there is a further, when there is a telephone contact and you inform the person , the person can say, you know, during this time, while i was in the registry, i got sick that's why tim and i can no longer be a donor, then the person is excluded from the registry, the transplant department is notified and the search is resumed with new strength ah or the person can say you know i changed my mind well then i was of one opinion now i am of another opinion no i i don't want everything to be closed. and we will help you at the person's request delete all his personal data completely along with the dna analysis and or the person can say you know everything about me okay i was waiting for this call i want to continue i

want to become a real donor and save someone then the donor's medical examination takes place again e dna analysis we we check the primary analysis and the donor undergoes a full medical examination, a very thorough medical examination because we need to be absolutely sure that there are no threats to the life of the patient and that the donor will not be harmed and if the medical commission that examines the donor makes a conclusion that this person is medically suitable for donation, then a date is set before the nation agrees with the donor because it should be comfortable for the person's time also agrees with the department like this and then all the actions are synchronized at the same time the donation happens and somewhere then

the transplant happens i want to thank you i just wanted to include one more person today and it is very important roman kuz was in touch with us under the founder of the ukrainian register of donors bone marrow and here is five-year-old makar from kharkiv in the lifetime of his father, the boy became a bone marrow donor for his father this story is about the family of kharkiv residents of the fornicators oleksiy olena and five-year-old makarchyk began their struggle in november last year, the father found out that he had a blood disease and to be saved, a bone marrow transplant is needed, so the family came to kyiv , there was not a single compatible donor in the world, and the little son asked, can i save my dad , i literally can’t hold back my tears, i want to congratulate you today on our broadcast i congratulate oleksiy and makarchika, unfortunately, we don't have much

time, but i want you to tell us about how you understood that a child can become a donor. good afternoon. i congratulate you. i 'm oleksiy. this is my son makar. so when i found out about my disease, the only way for of my treatment. it was a bone marrow transplant. unfortunately, the world registry did not find a suitable donor for me , so the doctors suggested a transplant from my son. at that time, as far as i know, it was the first such transplant in ukraine. 9 months have passed since then. how do you feel? tell me now. i feel well. i am under the supervision of the doctors of the okhmatdyt hospital. that is, you are under the supervision of the doctors and what the doctors say is that you have already

fully recovered. is there still a stage that must pass and you have pass tests and undergo diagnostics, a certain complete recovery will be after 5 years, such and such a segment is considered 5 years after transplantation, it is considered full recovery while i, er, pass tests and control how how does it behave when a new cell is produced, my cells in my of the body well, we want to thank makar that he is actually so brave makarchyk, thank you and er p oleksya, you really have a full recovery and recovery from the disease thank you, thank you today we talked about bone marrow transplantation so that such stories with a happy ending that you just saw were it is necessary to expand the ukrainian register of bone marrow donors more , it is a kind of army to fight against

blood cancer and we, together with the medical community , announce the mobilization to its love so please join, you know now the maximum the information with you was iryna koval and the program on health magnification glasses focus plus with a discount price of only 399 uah and get another pair as a gift these are comfortable modern glasses that give an increase of 160% light and comfortable functional and practical glasses focus plus excellent fit both men and women solder a wire repair a watch mechanism thread a needle is no longer a problem thanks to a specially designed collapsible frame and a compact cover how it goes in the set the glasses will easily fit in any pocket, do not strain your eyes, take care of your well-being, focus plus glasses

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