St Petersburg lecturer Svetlana Shchelokova: on donation, journalism and the "Write, help!" project

Why has the issue of donation become important for you? What is your personal story?

In the early 2009, I was in hospital, in the department of onco-haematology, with aplastic anaemia. Aplastic anaemia is a disease in which the body fails to produce blood cells in sufficient numbers, the ability of the blood to clot decreases, and the protection from viruses and oxygen exchange deteriorate. When I was waiting for the disease to be diagnosed, for the treatment and first successes I was having blood transfusions — packed red cells and platelets. I was 17 then, and I didn’t know anything about donors. But then I found out that sometimes people need blood transfusions, and the blood bank needs to be replenished. Doctors always asked my family to invite their friends to become donors for me. That was strange and a bit scary: what if they ran out of blood while I couldn’t do without it.

When I recovered and returned to my studies in journalism at the University, I started to write about donation and donors. Those texts were not only for my studying. I used to come to the blood transfusion department to talk to donors. I talked to experts in this sphere to understand why there were not enough donors. I came to a conclusion then that most people knew nothing about donation, and among those who knew some considered the money compensation too small, while others were afraid of complications. A lot has changed since then in the people’s attitude to donation, yet they never have a lot of donor blood in hospitals. Blood donation is seasonal, and at the end of the summer blood banks run almost dry. When my disease returned several years ago, at the end of the summer I had to post on social media to ask for blood donation.

On 7 April, during his annual report on the government’s work, Russian Prime Minister Mikhail Mishustin asked the lawmakers to pass the law on the single donor registry as soon as possible, as this is "about saving hundreds of people’s lives".

As for bone marrow donation, this issue emerged later, when after several recurrences it became clear that the disease wouldn’t go away and I would need bone marrow transplant. In my case that was not urgent. Doctors were checking the registries in advance, so I had time to prepare. I watched documentaries about donors and patients, read posts of those who had already undergone bone marrow transplantation. I had it in 2019 and since then I have felt responsible for distribution of information about bone marrow donation. As in my case the search was long, difficult and really expensive, I want other patients to have a different experience. That’s why I talk about the issue as much as I can, to broaden the Russian registry.

You are a contributor and editor of the AdVita fund website. Could you please tell us how the fund helps those who need a donor and how it supports donation in Russia?

The fund has a donor coordinator and a donor registry. The hospitals that the fund works with apply for donor aid, and the coordinator turns to the donors. Every week, the lists of patients who need blood are published on the fund’s social media. But it happens that the coordinator calls the donors personally, especially if it is about some rare blood group.

PR-specialists of the fund publish donor stories and interviews. Once we posted info graphics about preparation for donation and recovery after it. All this works for support as well: the people know that blood donation is not so difficult or dangerous, that you needn’t do it on a regular basis, that it’s important to be eager to help and attentive to your health.

The St Petersburg University Clinic of Communication Projects and AdVita charity fund launched the "Write, help!" project. You are the project’s coordinator. Could you please tell us about it?

The idea of the project is to create a single informational space in which students will broaden their perception of modern charity in St Petersburg and create relevant publications for AdVita’s media resources. Some time ago, my colleague from the fund developed such project for volunteer authors: we held meetings with the fund employees and journalists and discussed what to write about the fund and in what way.

Students of programmes "Journalism", "Advertising and Public Relations", "Clinical Psychology" joined the "Write, help!" project

In 2018, we presented this project at the Graduate School of Journalism and Mass Communication, thinking that some students may see a way forward to professional self-fulfilment in our topics. We held several meetings, took students to the blood transfusion department. Last year, I came to St Petersburg University to lecture to future journalists and almost immediately decided to find out if it was possible to organise a similar project that academic year. I developed a programme, discussed it with my colleagues from the fund and the clinic. The clinic organised a selection of participants, and on 6 April we held the first meeting.

I really want students not only to learn more about ways of helping cancer patients (the fund’s wards) but take a professional probe as well: write something, develop a media project on this issue. I know that some students are not happy writing the news. They want to cover something more emotional and important. Our project is for those who are in search of that, those who want to support people in words.

Donation is a really complex issue, on the crossroads of science, politics, public organisations, fundraising. How do you manage to combine it all in one project?

In my experience, not a single sphere of life works in some vacuum, everything is interconnected. The modern reality requires flexibility, meta skills. Charity is in essence a way of connection of various institutions. AdVita fund’s mission lies in comprehensive assistance to make it less complicated for cancer patients. That’s why a person willing to work with us needs to know, to understand at least, the legal framework of charity, public demand, real needs of patients and relevant information requests of those who monitor the fund’s activity, supports it or decides to support it. When we understand what’s going on, we are able to choose the tools and work. It’s a regular story.

I would also like to talk about bone marrow transplantation. If blood donation is overall simple and straightforward, it is much more difficult with bone marrow. Why is it so, in your opinion?

I think the main reason is that donation and transplantation of bone marrow in the context of historical and public development are quite new. Last year, the employees of the fund and the clinic celebrated a special date: 30 years of the first bone marrow transplantation in Russia. But we must understand that 30 years ago only certain people, pioneers, were involved. Those were the first trials in a specific clinic.

Ten years later, AdVita fund appeared, and more people became familiar with this method of treatment. But even in St Petersburg, few know about transplantation and donation of bone marrow. Along with the technological development of this method, the fund did everything for the people to: become familiar with bone marrow transplantation; enlarge the Russian registry; and make treatment more available. And they have succeeded.

However, bone marrow transplantation is still a much more unique treatment method than donor blood transfusion. We know that donor blood is often necessary in the course of certain operations, in maternity wards and in the process of administration of first aid to crash or catastrophes victims, for instance. To this end blood, transfusion has been used for long, many have already got used to it. There are staff donors and honoured donors in a lot of families now. Yet bone marrow donation is used mostly in cancer treatment, there are few real donors in Russia. Thus, people are not accustomed to it.

As a practicing journalist, what is donation promotion based upon, in your opinion? How are the new donors to be involved?

Promotion is based on values, values are based on personal stories, stories are based on experience. The most important thing is to share the experience of those who are sick and being treated, who are not sick but help; to find the common ground, common feelings and encourage each other to make the world a better place. I often write that to help you only need to be. That helping through donation cannot be passed over to machines. Only a person can donate blood or bone marrow. Any motivation and help come down to whether we want to become better ourselves or we want to make the world a bit better. In this sense, donation doesn’t differ from any other ways of helping. The rest in it is about attention to your own health and logistics.