Director of the National Center for Transplantation and High-Tech Medical Service Coordination of Kazakhstan’s Ministry of Health Serik ZHARIKOV:
KAZAKHSTANI RESIDENTS CAN REGISTER THEIR REFUSAL OF POST-MORTEM DONATION IN 2019
In Kazakhstan nearly 300 organ transplant surgeries are performed annually nevertheless currently the total number of people who need such an operation reach 3,500. The main cause for this situation is the shortage of donated organs. Serik ZHARIKOV, director of the National Center for Transplantation and High-Tech Medical Service Coordination of Kazakhstan’s Ministry of Health talked in an interview with Interfax-Kazakhstan, what solution to this problem, in his view, is, about promotion of organ donation in Kazakhstan and the prospects for development of organ transplantation.
- Serik Nagashybayevich, how is generally transplantation developing in Kazakhstan? When has the first organ transplant surgery been performed and how many have been made in the country to date?
- Transplantation in independent Kazakhstan has begun to actively develop since 2012, when a heart transplant surgery was performed for the first time in the country. Since then on the initiative of Kazakhstan’s Ministry of Health, a unified transplantation coordination service has been established represented by the National Center for Transplantation and High-Tech Medical Service Coordination of the country’s Ministry of Health. I draw [your] attention that our center is directly subordinate to the Ministry of Health. This practice exists in the whole world, the national centers for transplantation are subordinate to the ministry of health, or are its structural subdivision. Just in some countries this is public-private partnership but in any case supervision is exercised by the state. Currently an average of 300 operations is performed in Kazakhstan. Since 2012 more than 1,500 operations have been made, to be more precise, 1508 kidney, liver, heart, lung and in single cases, pancreas transplants.
- Is there a unified database of tissues and organs recipients and donors in the republic? How does it work? What data is stored in the register?
- In 2017 the Ministry of Health purchased a Czech information system through the World Bank for Reconstruction and Development which was tested out for several years in Europe. Now the pilot implementation of this system is underway. The Ministry of Health and the National Center for Transplantation are in charge of this entire service. Accordingly, when we put a patient, who needs a transplant, on the waiting list, for example, a kidney, we receive information about his state of health and personal data from other information systems. Minutes from the nephrology commission are attached hereto, which reviews the patient's paperwork and confirms the need for an organ transplant. Further the patient is sent to a tissue typing laboratory in order to make it possible to select a relevant organ according to its results. The system does everything automatically. There are certain criteria - the waiting list registration date, age, tissue type match, blood type match, whether the patient was a donor for someone earlier. If he was a donor he gets priority as an organ recipient. According to these criteria, the system selects, places on the waiting list and then the data is transferred to the transplant center, where doctors begin to call in patients for a transplant surgery. All that takes nearly 24 hours.
- How many persons are waiting for an organ transplant currently?
- Nearly 3,500 Kazakhstani citizens are currently registered on the waiting list. Of them 2,525 are adult patients and 49 children who need a kidney transplant, 441 adults and 7 children need a liver transplant, 111 adults and 14 kids need a new heart, a lung transplant is required for 9 adults. Combined heart-lung transplantation, when organs are transplanted simultaneously, is required for two adults. Patients on the waiting list are being served very slowly; simply many do not last through to see "their" organs. This is obvious but for the time being we cannot provide statistics.
- What operations are currently performed in Kazakhstan using living donors’ organs?
- In accordance with the Code on the Health of the People and the Healthcare System it’s allowed to take only one paired organ from a living donor - this is the kidneys (one kidney) or part of the liver. Most typically these are living related transplants, when a mother gives a part of the liver to her child, if he has congenital pathology. Such operations are performed on children at the National Center for Motherhood and Childhood and on adults at other centers. There were single cases of transplantation of part of the pancreas. The operation was done by experts from Korea. Our experts attempted to do such operations, which ended not so successfully. The transplant failed and had to be removed immediately. These operations are quite complicated technically, very good surgical equipment and expertise is needed, in particular, expertise for pancreas retrieval and for now we have had very little experience to this end.
- If a person wants his organs to be retrieved after death in order to save someone's life, and perhaps not just one life, where should he apply to notify of his wish?
- Registration is carried out in outpatient clinics at the place of residence. A person makes a special statement that after death his organs can be used as transplants. The application is entered into the information system. If this person suddenly passed off his brain death took place, which was confirmed following a medical team consultation, here I will emphasize that only after brain death access to the information system is allowed and doctors would learn about the person’s consent to posthumous donation, in case of such a decision, doctors have the right to retrieve organs, among other things, without asking for relatives’ consent of. Now it’s possible to express will about consent to donation through the e-government portal and the service will start functioning soon.
If in his lifetime, a person said nothing at all, and now such people are a majority, doctors ask his relatives before the organ retrieval after his death what the deceased person’s attitude to posthumous donation was.
- As for the refusal to donate, are these norms legalized?
- I would like to clarify this question. The point is that Paragraph 10 of Article 169 of the Code on the Health of the People and the Healthcare System states that we have presumed consent in Kazakhstan. That is, if a person in his lifetime did not state his refusal, then after his death doctors of healthcare facilities have the right to retrieve his organ from him for transplantation. There has been presumed consent in Belarus, Russia since 2000 and in Spain, which is the world leader in the field of transplantation. If there is presumed consent, then by the law we must register only refusals. That is, in his lifetime a person must come somewhere and write a statement: "I refuse to have my organs used after death." But we have a small legal conflict - the Ministry of Health, in accordance with this code, has the right to register only consent. We are now making amendments so that the Ministry of Health can record refusals of donation.
- Is this a measure really so necessary?
- Yes, the issue on how to refuse is of interest to the public in Kazakhstan since there is presumed consent. We are meeting halfway and making relevant amendments. I believe that in 2019 a new version of the code and new orders from the Ministry of Health will allow Kazakhstani residents to register their refusal of posthumous donation.
- In your opinion, to what extent are currently Kazakhstani residents ready to donate?
- Since 2012 we have built up some experience both in terms of cadaveric donation and living donation. It’s safe to say that if in 2012 when we asked relatives what their attitude to donation was, the response was extremely negative; people did not want to talk to us at all. Now the situation has changed dramatically. If we look up statistics, we still get refusal in 70% of cases. Relatives say they do not know how the deceased treated posthumous donation and say that they cannot make a decision for him. Because of that there is a huge shortage of donor organs in the country. In principle, as well as in many countries.
As for lifetime consent there are only a few people in Kazakhstan, just 15 persons are listed up, who came to outpatient clinics to put in their statements. For the time being Kazakhstani citizens are not ready to donate their organs.
- Every day you are faced with a variety of diseases, sometimes patients are literally between life and death. I would like to hear some amazing life saving stories out of your practice.
- There are many such stories. I recall the case of saving a child with a neglected form of kidney disease. His kidneys were failing with dialysis performed all the time; the child’s skeleton deformation began. The parents’ kidneys, sadly, failed to match. The child’s mum did everything possible - appealed to doctors, to public associations. We explained to her that a kidney could be available right now, in an hour, or maybe in a week, month, six months. The woman treated us with suspicion, went with her son, and then literally overnight a donor appeared. Doctors contacted the family, they returned, and early in the morning a transplant surgery was performed. The child began to walk to the toilet on his own, that was a great miracle because he had failed to do so for several years.
There was another case, a boy was brought from the western region, a sportsman, a judoist, at some point his heart stopped, complications after commonplace tonsillitis. And when a donor was found, his father was swiftly contacted, he grabbed the child in what they were and they went to the airport, there were no flight tickets, the plane was full. That was good that the airport and the Air Astana company administration helped out; the father and child were taken into the cockpit. For that reason the flight was to be delayed, an announcement about the cause for the delay was made to all of passengers and everyone met it with understanding. We performed a transplant; the child is safe and sound and now lively. There are a lot of such cases.
- Does the “black market” for organs exist in Kazakhstan? Social networks are full of ads about the sale of these or those organs. People sell them to buy a car or an apartment, settle debts, repay loans...
- In general, it is possible to talk about the “black market” only when sellers, buyers, organ retrieval specialists are involved with. There are only 9 transplant centers in Kazakhstan, most of them in Astana. Two regional centers in Aktobe and Shymkent. The opening of [such a center] is planned in Ust-Kamenogorsk on the premises of the city hospital no.1. There are no more than 10 doctors who possess such skills. It is impossible here because about 80 people are involved in the process of transplantation from the moment when an organ is retrieved from a cadaveric donor until the transplant surgery itself. What do you think, is illegal transplantation is possible here? Not! Perhaps if there were some private transplant centers and operations were made somewhere in “underground” conditions, like, e.g. in Pakistan. Here we produce an organ passport for each retrieved organ: from whom was retrieved, date, place, the presence of infections, weight, condition, and so on. The organ can be tracked down at any time: from whom it was retrieved and whom it was transplanted to. It is not worth talking about the "black market" on the basis of these ads only. Yes, probably people want to sell, taking advantage of the fact that there is the huge shortage of donor organs in the country. The sale of an organ in Kazakhstan is a criminal offense. Also a ban on advertising the sale and purchase of organs is introduced but why are there anyway advertisements? Because there is no punishment mechanism. The ban is imposed but it’s not unclear how to punish. Now the relevant amendments are being made to the legislation. In case someone advertises, they may be fined; if they re-advertise, the fine increases significantly. Who must supervise this? Clearly – the law enforcement agencies.
- In your opinion, are there gaps in the legislation, which, possibly, hinder the development of organ transplantation in Kazakhstan?
- For example, let’s take Belarus - the leader in terms of transplantation among the post-Soviet countries, moreover with the level of [its] transplant activity catches up with Europe’s activity and at some point overtakes [Europe]. Why is that? First, this is the support by the president of the country of transplant experts, sufficient funding, the relevant laws. Every manager’s activity rates are the organ donation development in each hospital. Based on the results of the activity, including the organ donation development the performance of a head doctor is assessed monthly, quarterly, annually. If a head physician concealed from transplant doctors that he had potential donors in his clinic and did not report this to the national coordination center then administrative measures would be taken against this doctor, including a dismissal. This is the most effective model that helped develop transplantation in Belarus. In Belarus cadaveric organs are transplanted into foreigners, including Kazakhstani residents.
- As far as it is actually known, in particular, these are heart transplants into children. Why are such operations not performed in Kazakhstan?
- Firstly, there is no experience, and secondly, Kazakhstan’s legislation does not allow the retrieval of organs from deceased children for transplantation. Before the age of 18 a person cannot be a donor. Even if brain death is stated that's impossible, because this is a child. We have now submitted for scrutiny a draft law on the determination of brain death in children. We are not talking about child's organs donation, we are talking about a procedure that would allow doctors to disconnect dead people from life support.
- The whole world was following the story of an American, Katie Stubblefield, who received a face transplant. How do you consider whether such unique operations are possible in Kazakhstan? What operations can be performed in Kazakhstan in the future?
- Transplantation does not stand still; in the future we want to perform heart and lung transplants on children, combined organ transplants when hearts and lungs, pancreas and kidneys are transplanted simultaneously. It is necessary to perform intestinal transplants. We had single cases when patients needed this operation but, unfortunately, we failed to help them. Abroad they transplant soft tissues of the face, perform face transplants and limb re-transplantation restoring lost limbs. We need to develop all this as well here. It is necessary to develop human tissue transplantation. The whole world performs this. [There is a] large contingent of citizens who require transplantation of blood vessels, cartilages, bone tissues and, in the end, this is necessary for the development of plastic surgery. There are people who need nose, trachea transplants, I am not talking about aesthetic aspects, transplantation of these tissues is required for health reasons, when a person cannot eat, drink, or breathe on his own. There is enough experience in the world but it is not the case in Kazakhstan yet. We will make every effort to achieve this.
It’s hard to talk about prospects. Those transplant centers we have in Kazakhstan are not standalone hospitals, they are based on the premises of large clinics, and there are simply wards over there. In order to develop transplantation, specialist institutions are necessary – an institution of transplantation, there must be science, there must be professionals trained across a wide variety of specialties who could deliver the whole range of transplant care services to Kazakhstan’s general population. And again, sufficient funding is required. Thereafter when all the technical issues of organ transplantation and rehabilitation of recipients are practiced it will be possible to expand this experience to other clinics. Probably in the near future, Kazakhstan’s doctors will be able to perform the whole range of transplant care, promote international [medical] tourism.
In general, the trends are positive, the volume of donor organs is increasing from one year to the next, the number of operations is growing, other areas are developing, for example, Kazakhstan’s transplantation doctors have begun to perform lung transplant surgeries. The transplantation development in Kazakhstan is orderly and steady.
- Thank you for the interview!
© 2018 Interfax-Kazakhstan news agency
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