"Meetings of donors and rescued patients have the strongest effect"
According to official data, more than 5,000 Russians need bone marrow transplantation, and according to unofficial data, this figure may be twice as high, the head of the Vasya Perevoshchikov National Register of Bone Marrow Donors (National RDCM), the head of the Rusfond project, told Izvestia in an interview.The Register" by Anna Andryushkina. Today, the National RDCM provides a third of all transplants in the country and supplies transplants from domestic and foreign donors. See our article about the speed of search and delivery and how donors are attracted.
"When other methods don't help"
— You are one of several bone marrow donor registries in our country. To what extent do the number of donors cover their needs?
— To date, Russian doctors have access to information about 382 thousand potential donors. Of these, 111.5 thousand are donors of the National RDCM.
Let me remind you that bone marrow transplantation (BCM) is one of the most difficult treatment methods. It is used for oncohematological diseases, disorders in the hematopoiesis system and the immune system. When other methods don't help. And if the patient does not have a compatible donor in the family, doctors look for an unrelated donor in the registry.
According to official data, about 5,000 Russians need TCM every year. According to experts, 10-12 thousand, while unrelated TCM requires about 4-5 thousand. And about 500 transplants are performed per year. Of course, 382,000 potential donors are critically small to meet the country's needs.
In Russia, only 0.26% of the population is registered. For comparison, in Germany there are 10.5 million donors in the database. This is 12% of the population, and they provide about 2.5 thousand transplants per year for their patients, covering 80-85% of their needs. It is important to note that all registries in the world, even such successful ones as the German one, somehow turn to the database of the World Association of Bone Marrow Donors (WMDA).
— What is the interaction between the National and Federal Registers?
— Since January 2023, donors of the National RDCM have been included in the information system of the Federal Register. The database contains anonymized data: the phenotype, gender, and age of donors.
In addition, this year we have been assigned the role of a recruiting organization. There are only four roles in the system: a recruiting organization, a typing laboratory, a transplant center, and a cell harvesting center.
The doctor searches for a donor for his patient in the Federal Register, and in case of a match with the donor of the National RDCM, he contacts our medical directorate.
The National RDCM was established in 2017, long before the advent of the Federal Register system. And, of course, we not only inform volunteers and organize sampling of a biological sample for genotyping (research of genes responsible for tissue compatibility. — Izvestia), as do other recruitment centers.
As a donor center, we provide a full cycle of work with the donor — from informing and genotyping to managing the donor at the stages of selection, preparation for the procedure of cell collection and donation itself, as well as monitoring donors for 10 years after the procedure. These are WMDA recommendations. This frees doctors from uncharacteristic work and allows them to focus on treating patients. Unfortunately, the role of the donor center is not yet provided for in the Federal Register system.
— How many potential donors become real? What are the contraindications to bone marrow donation?
— According to international statistics, the probability of finding a compatible donor is 1 in 10 thousand. In the National RDCM, after matching, the dropout rate of donors due to lack of communication with them or rejection is 15.7%, which is a good indicator.
If we talk about joining the register, then everything is simple. The volunteer must be healthy. The National RDCM accepts healthy people aged 18 to 35 years and weighing more than 50 kg into the registry. If you have doubts about your health, we recommend that you wait until you join and consult a doctor.
If we talk about contraindications to bone marrow donation — that is, to the donation procedure — then the order of the Ministry of Health lists the absolute contraindications to donation. These are, for example, HIV infection, viral hepatitis B, C, tuberculosis, oncological and autoimmune diseases, and blood diseases. There are also temporary contraindications — pregnancy and breastfeeding, taking immunosuppressive drugs, acute infectious diseases, exacerbation of chronic diseases.
It is important that the final decision on the possibility of donation is made only after a comprehensive medical examination at the cell harvesting center. The goal of the donor center is to ensure the protection of the donor's health and rights, and to make donation comfortable.
"It may take 10-30 years before the donor matches"
— What is the time from joining the register to matching with the recipient?
— A match can occur immediately after the inclusion of the donor's data in the database. As a rule, this activation takes six months, as there is a queue. The National RDCM is a non—profit medical organization, and we are developing a donation registry. The cost of including one donor in the National RDCM is 18 thousand rubles.: 15,000 rubles — genotyping of volunteers, including reagents and supplies, maintenance and equipment of the NGS laboratory. Another 3 thousand rubles is the agitation of volunteers, the promotion of donation, including the organization of donor actions, events and information companies, supplies for taking biological samples, the maintenance of the National RDCM — administrative expenses, salaries, travel expenses of employees.
It may take 10, 20, or even 30 years before the donor matches the patient. Or the coincidence may never happen. That's why it's so important that when people join the registry, they understand that this is a long-term voluntary commitment. The donor is in the database from 18 to 55 years old and, in theory, should be ready to respond at any time, monitor his health status, and inform the registry of his current contacts if the phone number or email has changed.
— Are there any honorary bone marrow donors already? How many times can I become a bone marrow donor?
— There is no official "honorary donor" status for bone marrow donors. Although the FMBA medal "For assistance to the donor movement" and the right to receive a monthly tax deduction of 500 rubles are provided.
The number of donations is not regulated by law. A donor of the National RDCM can donate cells twice — for different patients. After the first donation, it will not be available for search in the system for a year, as its recipient may need to be re-transplanted, and the donor is somehow assigned to it. It is important that the second donation, as well as the first one, is carried out exclusively with the consent of the donor. All over the world.
In addition, the donor can refuse to donate at any stage, without explaining the reasons. In this case, the doctor initiates a search in the donor database again to find another "genetic twin." One year after the first donation, if the donor wants to stay on the register and is ready to donate cells for another patient, we return him to the active status in the system.
— What are the most popular myths about bone marrow donation?
— The most common myth is that bone marrow donation is connected to the spinal cord and spine, and to take the cells, doctors pierce the spine with a large needle, after which you can stop walking forever. Of course, this is not the case.
The bone marrow is an organ of hematopoiesis, and cells are harvested in two ways: from peripheral blood or from the pelvic bone. The donor chooses the method himself. The procedure is performed under the supervision of doctors at the cell harvesting center.
"Meetings of donors and rescued patients have the strongest effect"
— How many transplants can you do with the help of your donors per year? Who are the patients — how many adults and how many children?
— Since 2019, we have delivered 532 transplants to Russian clinics. The patients include both children and adults. For example, in 2024, the National RDCM provided 143 transplants for 64 children and 79 adults: 99 from domestic donors and 44 from foreign donors.
— How much is our population aware of bone marrow donation?
— Public awareness is still insufficient. Many people still confuse the bone marrow with the spinal cord. Our task is to create understandable information materials, hold actions, and involve the media. We work with young people because young donors are more in demand by clinics. Their transplants take root better, and there are fewer complications after transplantation.
— In which regions are bone marrow donors most common? Which ones are the least likely?
— Top-10 regions in the National RDCM database: Moscow, Tatarstan, Saint Petersburg, Moscow Region, Bashkortostan, Novosibirsk Region, Perm Territory, Krasnodar Territory, Rostov and Chelyabinsk regions. Most of the donors are from Moscow and St. Petersburg: this is due to the awareness of the population.
The situation is more complicated in the regions due to a lack of information and tools for joining the register. Therefore, we are developing a remote recruitment project through the Russian Post, when anyone who wants to join the registry can submit an application on our website and, having received a set for taking a bio sample from the oral cavity by mail, send it also by mail to the registry laboratory. The project is four years old, thanks to it 30 thousand applications were accepted, 30 TCM were carried out.
— Which donation promotion campaigns traditionally have the greatest effect?
— Meetings of donors and rescued patients have the strongest effect. Two years after the transplant, if the patient is healthy and both sides are ready, we will arrange such meetings. When people see a specific result — a life saved, it motivates much more than any theory.
— How often do donation refusals occur?
— There are refusals, and this is the right of the donor. We have one of the lowest bounce rates. The reasons are different: fear for health, lack of psychological readiness, opposition from loved ones. Therefore, we pay great attention to informing our clinical psychologists at the stage of joining the registry and working with donors.
— What is the reason for the low dropout rate of donors?
— High-quality primary genotyping and recruitment quality control system. We always conduct a follow-up call of volunteers after the donation campaigns, to clarify their readiness. Plus a full cycle of work with clinical psychologists who accompany the donor 24/7 at all stages.
— What standards of working with donors, in your opinion, require urgent consolidation and why?
— It is necessary to create uniform standards for bone marrow donation in the country. We have experience: We were the first to implement NGS technology, we ensure selection in 2.5 weeks, activation in 3.5 weeks, and we monitor the donor after donation. These standards should be common to the entire system.
— What is the most important turning point in the development of bone marrow donation in Russia that you would single out? Which of the things that seemed impossible 10 years ago has become a reality?
— I would highlight two key points. The first was in 2017, the creation of the National RDCM by NGOs, namely Rusfond. The second is in 2022, the creation of the Federal Register information system, when the state systematically joined the development of bone marrow donation. Now there are all conditions for combining the efforts of NGOs and the state.
— Recently, the National RDCM signed a memorandum with the BRICS Expert Council. What will cooperation look like in practice?
— The BRICS Civic Council has become a partner of our international conference. We have signed a memorandum on joint activities to inform the population of the BRICS countries about bone marrow donation. We will hold general conferences, create informational materials, and share experiences. Bone marrow donation knows no borders. Recently, at our conference, a Russian patient met with an Indian donor who saved her life three years ago.
Переведено сервисом «Яндекс Переводчик»
