Ready to share the brain
A single donor bank is being created in Russia
Irina Botuzova, St. Petersburg Vedomosti
Every 14 minutes, someone in the world finds out that they have blood cancer. For a third of these patients, the only chance of salvation is bone marrow transplantation. In Russia, such an operation is required annually by more than five thousand patients. And it is done, according to the Ministry of Health, almost two or even three times less. Why?
The fact is that the probability of finding a genetic twin in a foreign bank is possible only for a negligible part of Russian patients — too many nationalities live on the territory of our country. And the number of registered donors in domestic databases is only about 200 thousand. Although, according to experts, there should be at least half a million in them. And even better — about one and a half million.
Recall that the path of creating a domestic register was thorny. One of the founders of bone marrow transplantation to patients with blood diseases was St. Petersburg Professor Boris Vladimirovich Afanasyev. In 1991, he performed the first successful allogeneic (that is, requiring the participation of a donor) transplantation of hematopoietic stem cells to a child in Russia. And nine years later, the First Medical University in St. Petersburg opened the only university clinic for bone marrow transplantation in Russia at that time. At the same time, the first campaign to attract potential donors took place in the country: doctors, medical workers and students of the First Honey donated blood for typing.
In 2007 — and also in St. Petersburg — the Research Institute of Pediatric Oncology, Hematology and Transplantology - the Raisa Gorbacheva DOGiT Research Institute, where all types of bone marrow transplants for both children and adults began to be carried out.
But, since at that time there was no own registry in Russia, the search for genetic duplicates was conducted in an international registry, which has about 40 million potential donors in its database. However, for those who think that this is a lot, we will explain. In order for the transplant to be successful, it is necessary that the donor and recipient have the same DNA. And if a person has only four blood groups, then there are thousands, if not millions, of DNA variants. And the probability of finding a person in the world who has the same DNA as the patient is 1:200,000.
One more thing. The search and activation of a donor in the international registry with the delivery of a transplant is oh so expensive: from 20 to 60 thousand euros. Therefore, in 2013, the creation of a full—fledged National Donor Registry began in Russia, which they decided to name in honor of Vasya Perevoshchikov, a ten-year-old boy for whom a genetic twin was never found.
The appearance of the Russian registry gave a chance to more patients to find a suitable donor in their country. Moreover, this procedure has become much cheaper. Search and activation — only about 400 thousand rubles. But it's not just about money. Russia is a multinational country with many ethnic groups and rare genotypes, so it was often not possible to find potential donors in other countries.
At the moment, the national registry is the largest database of bone marrow donors in Russia. There are more than 70 thousand potential volunteers in it. And this is slightly less than half of all volunteers registered in our country from 16 registers. Every year, the national bank managed to find donors for about 15-20% of Russian patients.
According to Dmitry Pevtsov, a transfusiologist at the Gorbacheva Research Institute, since last year the donors of the national register have been included in the 39 million database of the World Association of Bone Marrow Donors. And already this year, the first donor transplant was sent from Russia to Australia for a woman suffering from leukemia.
According to the expert, even during the sanctions period, cooperation with international stem cell banks does not stop. Although this cooperation is hindered by disrupted logistics chains. Because of this, the cost of delivery from abroad in some cases has increased tenfold (!). And if you consider that the bone marrow for transplantation is stored for 72 hours, then a long flight is sometimes not advisable at all.
According to the Russian authorities, there is only one way out of a difficult situation — the creation of a unified federal register of bone marrow and hematopoietic stem cell donors, which would combine all the data on available volunteers in Russia. By the way, such a register started working on September 1 of this year. It was created by the Federal Biomedical Agency (FMBA). Its main task is to increase the number of potential donors and simplify their search for a particular patient.
According to Sergey Voloshin, the head of the department of the Russian Research Institute of Hematology and Transfusiology, the chief freelance specialist-hematologist of the FMBA, today, in order to find a genetic double for a patient, doctors have to refer to each register separately. This takes time, which the patient may not have. A single database will greatly speed up this process.
Moreover, the formation of such a register should help to increase the number of donors and, accordingly, increase the probability of success in the search. However, this will not happen immediately.
The collection of information on Russian medical centers that want to participate in the creation of a unified register of bone marrow donors will be completed no earlier than the end of this year.
According to Voloshin, "now the activation and creation of a single register are being implemented at the level of a working group with the involvement of all institutions in Russia. Methodological recommendations have been created, and by the end of the year all information on the centers of the Russian Federation that want to participate in the creation of the register will be collected. At the same time, funding will be determined and the channel through which money will flow to centers that want to engage only in recruiting, bone marrow harvesting, transplantation, typing or all together."
At the same time, the FMBA expects that both state and non-profit organizations will continue to attract potential donors. Resources have already been created for institutions wishing to connect to the unified register: a website, a hotline where you can get acquainted with all the requirements and methodological documents.
So far, only 112 thousand potential donors have been included in the new register. That is, the coveted 500 thousand is still very far away.
As Voloshin stressed, today to join the federal register, you can contact one of the recruiting centers, of which there are now more than a hundred in the country. First of all, these are blood service institutions. But soon it will be possible to join the register through the unified portal of public services in the "Health" section.
For the first time, to get into the database, it is enough to donate only 5 milliliters of blood — for further genetic examination. The procedure is absolutely painless. Later you will receive a message that you have entered the register and have become a potential donor.
Your readiness for further steps should be assessed as consciously as possible. So as not to retreat when a human life is at stake.
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