We are people who want to help
Shamil Galeev, Initiator of the creation of a bone marrow donor reception center at Skolkovo
About the company
I work for ITV, a Russian developer of software for security systems. To put it simply, this covers all software related to access passes, as well as face and number recognition software. Our products incorporate a number of different security systems and help users configure and manage them. We have been in the market for more than 20 years. Our company employs some 500 people and has 13 branches throughout the country.
Until recently ITV was a participant in Skolkovo, but our residency came to an end last Summer. Nevertheless, we still rent an office in Nobelya Street, in the Mendeleev Quarter.
For those who associate Skolkovo with the large black building displaying the letters Sk, it is worth visiting the 4 blocks on Nobelya Street. In reality, it is there that Skolkovo and Skoltekh began.
ITV moved to Skolkovo in 2014. When we arrived there was no rail service from Slavyanskiy Bulvar Metro station - but there was a free Mercedes minibus shuttle service. We have watched Skolkovo develop and grow.
Skolkovo is a center for work, but it is also linked to people’s personal experiences related to bone marrow donation. And that is what I would like to talk about.
My path to becoming a donor
I studied in Kazan, and regularly donated blood plasma when I was at university. During one of my visits to the donation center the doctor asked me if I wanted to put my name on the bone marrow donation register. Naturally, the idea made me nervous. The words “bone marrow” sounded alarming. But the doctor briefly explained to me that the initial test is nothing to be frightened of. All you need to do is give 3-5 ml of blood. I agreed, gave my blood sample, and forgot all about it.
More than ten years passed. In April 2021 I was contacted by the Kirov Hematology Scientific Research Institute, and they asked me if I wanted to donate bone marrow for a leukemia patient. Initially I was suspicious that the Institute had chosen to contact me via a social network. I checked with someone I know who lives in Kirov, and she assured me that the Kirov Scientific Research Institute does exist, and that they do specialize in bone marrow donations.
Donating bone marrow is a wholly anonymous procedure. All the information in the database is encrypted. Only once the donor has been activated are their contact details given to the doctor. When the doctor from the Kirov Scientific Research Institute contacted me, he knew nothing about me - all he had was my code, my blood group, my telephone number and a medical assessment that as a donor I was suitable for the patient. During our conversation, he asked me about my health, lifestyle and about any concerns that I may have.
As I learned, in order to be sure that I really was a good match for the patient, I would need to be tested for 50 different factors. I did this twice!
And then the day before I was due to fly out to donate my bone marrow, they called me from the center and told me that the patient had died. When a patient is being prepared for the bone marrow transplant, they first undergo a course of aggressive chemotherapy, and this is very damaging to their immune system. Despite the effect that the patient is in a sterile container, any microbes in their drinking water or food can be extremely dangerous for them.
It took me a month and a half to get over the shock. I did not even know the patient, but I was still very upset. The thing that bothered me most was all the time that had been wasted. I had spent time checking out the research institute, travelling there, and doing the tests. After this experience I decided to do something to bring people’s attention to the problem of finding blood marrow donors.
The most difficult thing is to find the right donor for the individual patient. Few patients are able to find a donor from among their relatives, and therefore many countries have national registers of donors. In Russia there is a register, but it is very small. In Germany there are more than 20 million people on the national register, while in Russia there are just 200,000. The bigger the register, the better the patient’s chances of surviving.
Basically, we can spend just a few minutes of our time to give a blood sample, and as a result we can give someone a chance of life.
The Skolkovo donor reception center
I started in spring this year. I contacted some specialists and asked them what I could do to help them. They recommended me to focus on involving new medical institutions in the donor program. That will simplify the process of adding people to the donor registry. And, of course, providing information! People need to be told about the actual procedure. After all, most people, just as I did to begin with, have misconceptions about this.
Any healthy person under the age of 55 who does not suffer from any of the diseases listed in the Research Institute’s site, can become a bone marrow donor, but they need to have their names put on the register before the age of 45, in order to allow the required 10 years to activate the donor. Unfortunately, Russia does not have any national programs to support donors. And the donors are not offered any compensation.
So, I decided to get Skolkovo involved in the process. I am a member of the local sports chat group, and through the group I found the contact details of Renat Batyrov, the General Director of the Tekhnopark. I decided to write to him, tell him about my experience, and describe my idea for promoting bone marrow donation. I made it clear that this was not a commercial proposal and I was not looking for any sponsorship- I just needed some contacts. And after we had exchanged a couple of messages, Renat told me who I should get in touch with. So then I contacted Alexey Remez, the founder of the Unim Laboratory. It was he who founded the Point of Care Clinic at the Tekhnopark, and he agreed to set up reception center for potential donors at hic clinic.
But organizing this presented a challenge. It was necessary to approve this plant with the Research Institute, train the staff and enter into a special agreement. But the main thing is that now people can go to Skolkovo, give a blood sample, and be entered on the donor register. We started working in September. In the clinic’s procedural room the staff take blood samples, and people can make an appointment via its chat-bot.
Of course, at the beginning there were a lot of difficulties and issues that needed to be resolved. For example, how should the blood samples be stored? Now we have a special freezer cabinet for this purpose.
One of the most important parts of our work is to inform as many people as possible about our existence. First of all I would like all of Skolkovo’s residents to know about the possibility of becoming a donor.
People also need to be reassured that it is not necessary to donate any of their bones! Our bone marrow is the organ that makes our blood cells, and it replaces the patient’s entire immune system, which has been destroyed by the highly aggressive chemotherapy. The patient receives the donor’s immune system and the donor’s blood group. A patient may have type A blood group, but after the bone marrow transplant their blood group might be type B or AB. As a result, part of the donor will live on in the patient’s body. In short, it is a chance to save someone’s live and become a real superhero - something many people dream of. Just to cite a recent example, the businessman Oleg Tinkov’s life was saved thanks to a donation of bone marrow.
The Gosuslugi system plans to add an option for users to make an appointment to have a blood test and be entered on the donor register. But just adding a button to the Gosuslugi app will not in itself persuade people to have a blood test if they know nothing about bone marrow donation. So we need to talk about this issue as much as we can.
I do a great deal of information work. I try to raise awareness of the issue through my local clinic, the local, and blood transfusion centers. I talk about this issue in the different branches of my company.
The important thing is that when people learn about this simple way of helping others, they will agree to give a blood sample. There are business initiatives, but there are also social initiatives. We are people, not just robots whose job is to sell something. We are people who want to help others.