Several tens of thousands of people today will be diagnosed with cancer and about 20 thousand people will die – how to use these figures for inspiration? Why study a disease if the science of our small amounts and why people do not feel the connection between the laboratory and real patients? In the Russian cancer Congress, which took place in Moscow, “Pravmir” talked with Christine Zakurdaeva, hematologist, earlier this year created the “Respond” a non — profit organization, whose purpose is to Fund research by Russian scientists and doctors in the field of Oncology.
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Where is the connection between the laboratory and care of patients
– The creators of the Fund are professionally involved with the field of Oncology or here personal and family history?
Story different. Council members have oncologist Ilya Timofeyev, he was for many years professionally engaged in research in this field and is headed by the Bureau for the study of kidney cancer. Is Alexei Marchenkov – physicist and our driving force. He obvious importance of science, and the family has several cases of cancer, his family – that is, cancer survivors. That is such a bunch of science and family history.
A personal story is me, because of her I came in Hematology: when I finished school, my grandmother died of leukemia. Their stories have and our Trustees, each of your account in this fight. And we want in the long run, those who won, it became more.
– Your first donators, as far as I know, were oncologists?
– Our first donor was the professional community of the Russian society of clinical Oncology (RUSSCO). They have their own educational program and a large program on molecular diagnostics. They are one of the most prominent and significant members of the scientific community in the Russian medical arena.
Handed over to us the money was collected at the Russian Oncology Congress money from paid registrations and sales of branded products. The head of RUSSCO Sergei Tulenin noticed that oncologists are the first to support the Fund, because no one understands the importance of science, not only for his work but also for their loved ones. On the one hand, this ensures the professional development of the area in which you work, and on the other it is in General important for everyone and for the future. Now we trial and modestly began to raise funds in General, has started collecting donations on our website. And came the first donations from different people, we hope that it will be successful in the future.
Why is it important? When the public is involved in supporting scientific research, people who are not professionally connected with this area, start a bit more to learn and understand about cancer, is now developing very rapidly. Changing attitudes to cancer as a deadly disease. In this direction there are many different forces – all who tells the stories of successful control: the blogger in your account, and the funds involved in targeted or systemic support. We are all pursuing a common goal: to not professionally associated with medicine people and learned more about the cancer. And for the sake of their loved ones, and for their own health. It is important that people learn to learn, not afraid, and acted deliberately.
What else is important when you are invested in research, you invest in development. No matter how much we wanted to speed up the processes of research – it’s a long story. But supporting science today, we are tomorrow – we provide clinics and physicians new tools for cancer control in the future. Unsolved problems are still there.
As we speak or have some of their own Affairs during the day, several tens of thousands of people today will be diagnosed with cancer – imagine is a small town. And about 20 thousand people will die today.
These figures should not be used for fear. Rather, for inspiration – that’s an area where we need to exert maximum effort. Not to shift the decision on the other – that there are specially trained people, even if they are doing this. Yes, you can say: there is a janitor, even though it makes our city clean. And you can go on to lift the piece of paper and throw it in the trash.
– And how to involve the public – people who are not professionally connected with medicine and science?
Is the task that we now just think. For Russia funds to support science is a fairly new story. For many people, no obvious connection between the laboratory where the research is carried out and the end result – helping the patients. That is some kind of abstract or too General history – to support the kind of science that are not always clear.
But cancer-stricken man – now he is alive and spending time with family. This became possible due to the fact that 10-15 years ago, scientists worked on this subject and a huge number of professionals together, looking for a target, checked the approaches, doing research to prove the safety and effectiveness, and in the end got the result in a specific clinic, the patient survived.
And we want to tell in detail, why do we need science in Oncology today, we support a scientist who is trying to understand the mechanisms of occurrence of tumours or looking for a potential target, and in the future it will become an effective therapy or approach to diagnosis. In other countries, the work of organizations such as ours, decades. In Russia the vast majority of scientific programs enjoy public support.
According to estimates of the Organization for economic cooperation and development (OECD), spending on research and development work per capita in Russia in 2016 amounted to $273 is approximately 3.6 times below the average for the OECD. However, only 4% of this amount goes to medicine and health care, when in OECD countries – an average of about 20%. For example: the budget of the National cancer Institute this year is $5,965 million Additionally, they will receive another $300 million for Biden Cancer Moonshot project [an initiative of the U.S. government, its goal is to accelerate the victory over cancer, ensuring the cooperation between researchers, doctors, agencies, and pharmaceutical companies].
But I’m sure the future just for public support. Over time we have accumulated an understanding of how important it is, and there will be a qualitative leap. Today one of the leading organizations supporting the development of science in Oncology – Leukemia & Lymphoma Society began as a story of parents who lost a son due to leukemia.
Charitable Foundation Susan G Komen – one of the most influential in the world – was created by the founder of $ 200 in memory of sister who died from breast cancer.
A beautiful example of crowdfunding – British Cancer Research UK. From my point of view, this is the best example: they do not receive government funding, but collect hundreds of millions of pounds every year. Last year they accumulated ￡386 million – these funds were aimed at supporting scientific research. Another example: the Foundation of the American society of clinical Oncology – Conquer Cancer Foundation – in 2016, has sent $23 million in research funding and dissemination of knowledge about cancer.
There is a widespread view that support for science only very large amounts, which will allow to solve something, and small donations do not make sense. It is not so. Of course, if we look at the entire path of the developments in medicine – from idea to the bedside is many years and significant funding. But every step matters, every study carries valuable information and often needs a little financial support.
For example, the size of the research grant, in our first competition did not exceed 250 thousand rubles. This amount under the force of all of us, if United. If we look at the records of Cancer Research UK, we will see that 9 out of 10 of the donations that they get are in terms of our money approximately one thousand rubles. Joint efforts to turn these donations into a full-fledged program funding scientists.
Investing in research, we provide the future of children and grandchildren
— When you have the idea to create a similar Fund in Russia?
– A little more than two years ago, she was in the air. I looked at the positive similar examples in other countries, communicated with a large number of scientists and developers, my colleagues – doctors. It seemed that everything that needs to connect, and ideas become visible and accessible, should become an opportunity – when a society helps to develop an industry that really applies to huge numbers of people.
The survival of cancer patients over the past few decades has increased significantly. Now in countries with developed health care for about half of all patients live 10 years or more after diagnosis.
In the 1970s, if we take the data of UK, their share was about 25%. This breakthrough contributed to significant scientific progress, the growing life expectancy of patients is associated with the emergence of new technologies, diagnostic and therapeutic approaches.
Today, many was believed to be hopeless cases can be treated successfully, it increases not only the duration but also the quality of life of cancer patients. But not all tumors achieved such success, the doctors and scientists much remains to be done to study the mechanisms of cancer development, access targets and to develop effective methods for diagnosis and therapy. This will lead to the fact that more cancer patients cope with their disease will be able to live, work, spend time with loved ones.
And everyone, absolutely everyone can help in this fight. Investing in research today, we provide future – their own, their children and grandchildren. And here I was discussing this idea with colleagues and friends – she evoked sympathy, but the crucial moment occurred a year ago, the Fund did not yet exist, only thoughts that this project is needed in Russia. We co-founders (Alexei Marchenkov, Ilya Timofeyev and Anna Pilicheva) first gathered expert advice: at our request, responded, 15 people (now the Council of 18 people) – people with international experience, scientists and doctors from Russia, Europe and the USA. They took the time came and supported us.
– You understand that the Foundation is supporting research and development in Oncology is not fantasy, but quite real and useful story. What to do next?
– We understand that one of the weaknesses for raising funds for scientific projects – a matter of trust. The question of correct selection of studies for support. But how do people from professional associations, our strength is expertise. So we brought together people from different countries and with different backgrounds, with experience in different research areas, both fundamental and clinical, working with different types of tumors. And balanced so the Advisory Council can determine the development strategy – what projects will receive priority.
We put in the Charter that the Foundation Board allocates funding to projects based on recommendations of the expert Council – for us it was a matter of principle, even though by law we were not obliged to do so. It is important to create a transparent mechanism of selection of projects. This is useful for everyone, including applicants who do not win. In fact, what we do – began to study the experience of other foundations and agencies from different countries, formalizability procedure. Our primary task is to select and Finance the projects and then to monitor researchers.
So it was understandable and transparent to donors who donate us money so they can see how and why we chose certain projects. Then we gathered the Board of Trustees in December of 2017 received all registration documents. Started on the 5th of February – has opened collection of applications, in parallel, built the Foundation, interaction with partners, providing customer support to the activity was transparent and professional. In April, we announced the results of the first competition.
– You mentioned the Board of Trustees, and what his function is?
– There is established by legislation – this Supervisory, checking that we are doing everything correctly and in accordance with the statutory purposes. But this Council are the people who help us more than we could count. They are, in fact, help us to shape the vision, plans for partnership activities and fundraising. In it, prominent scientists, industry people and not only, again, to get a versatile look.
Among them are Robert Gale, a distinguished scientist and hematologist, fellow of the American College of physicians, who made important discoveries that formed the basis of today’s successful targeted therapy of chronic myeloid leukemia. He was President of the International organization for bone marrow transplantation. And took an active part in liquidation of consequences of radioactive contamination, including the accident at the Chernobyl nuclear power plant.
Mikhail Samsonov, a cardiologist and immunologist with more than 20 years engaged in the development, testing and registration of medicines in several therapeutic areas (Oncology, rheumatology, infectious diseases and cardiology). Boris Andrianov, cellist and teacher at the Moscow state Conservatory, Director of chamber music festival “VIVARTE”. In September, successfully held the first session of the trusteeship Council where we first gathered all of the participants discussed the development strategy of the Fund.
Now the winners of the explore the complex mutation and side-effects of chemotherapy
– The first contest where selected research projects for funding, you have already spent. How many applications from researchers?
Came 22 applications, of which 15 were sent to the second stage of scientific expertise. We believe this is a very good indicator for the Fund, which at the time was less than two months. Applications were received from both the Federal institutions and regional clinics, it’s very cool. The first competition was our test of viability. And we’ve passed it – in these terms held 54 examination: each of the 15 applications was analyzed at least three experts, Russian and foreign. All of our applicants received feedbacks, we sent each volume summary documents: we had five criteria for selection, and that for each item, the applicants were written pro and contra.
We had two winners. Application of Maria Stepanova, doctor of the Saint-Petersburg clinical scientific and practical center for specialized types of medical care, devoted to lung cancer. This cancer is divided into many subtypes, one of them is associated with a specific mutation in a particular gene. In 2004 for patients with this mutation was first developed targeted current drug. And everything would be fine, but patients began to develop resistance to treatment. Then began to study the mechanism of this resistance, to develop the next group of drugs is now available second and third generation of these drugs.
And now Maria is going to investigate the mutation associated with the resistance to the drug. To create a tool that allows to promptly detect the presence of this mutation is not tumor tissue and in peripheral blood. What does it mean for the patient? That he in time will determine when therapy can be ineffective and will begin to choose a different treatment strategy.
– To analyze the blood – because it’s easier for both the patient and the doctor? And cheaper for the clinic?
– It is more convenient for the patient – in this case, it is not necessary to do a repeat biopsy. Moreover, not all lung cancer patients may take it again. And it’s more accessible, Yes. Because a method (PCR-diagnostics), which is available in most clinical diagnostic laboratories in the country, unlike the current situation – when they use more expensive and advanced test (sequencing).
– And the second winner?
– Alexey Rumyantsev from the National medical research center of Oncology.N. N. Blokhin story more understandable, but no less important. For oncopatients have a value of two aspects, life expectancy and quality. We often focusareas only on the ground, throwing all efforts to increase the effectiveness of treatment.
But there are types of chemotherapy, in which side effects are painful, they impair quality of life do not allow patients to adequately carry therapy courses – become a reason to reduce the dose, interrupt treatment, or even rejection of him. That is, the side effects may be associated with effectiveness of therapy. There are drugs that affect the mechanisms of occurrence of adverse events – nausea and vomiting.
And Alex is trying to solve two problems: to develop a new mode of combination therapy, which will make the prevention of nausea and vomiting effective and affordable. Plus, he tries to apply a reduced dosage to avoid negative effects from the therapy part of drugs cause sedation. What is important to note that the design of the study has been well designed and thought out, this is highlighted by our experts. That is, the young scientist immediately sets itself a high bar indeed.
Our current projects will take a year, and it is, in fact, quite short on the landscape of scientific research period of time. We don’t know, positive or negative will result. But we will try in their examples to follow, as are the studies of how recruitment of patients, how data is handled. And to tell about all the updates that for us – people with my job security — not so easy: clearly and simply describe why these scientific developments is important.
Each of us is a professional in his field – in science, research, law, state regulation. And we feel that this is his field, but everything to do with social activities for us new, we learn, we look at the experience of other assets – what, who, how does. And thanks to the volunteers, to build their work.