
Krasnoyarsk Regional Children's Hospital. Sonya is now a year and a half. In May, she found a nephroblast (high -glow -quality embryonic tumor of Wilms). Stage one, and operate successfully. Chemotherapy with the foreign drug “Winkristin Teva” goes according to plan, but in October it is replaced by domestic (“Vero-Vincristine”), and Sonya is taken away by his legs.
Nearby is a mother, she is ready to find a European -made medicine for any money, but he is not. Nowhere. In Europe - there is, but not according to the Russian recipe. The embassy cannot help.
Since the beginning of November, Anastasia Calebin, the director of “Space for parents with the children of the villa,“ Chicken ”with a huge circle of communication, is looking for doctors in Germany who will be sold to the medicine will be included in the search. But the following obstacle will arise - it is possible to carry the medicine to Russia only for personal purposes. So, you need to fly to the mother, show at customs the conclusion of the medical commission. The mother has neither a visa nor a passport.

This quest (price - Sonya) proposed the Russian government, carried away by import substitution. The conditions of the quest, they are also the roots of the drug crisis - from last year's spring, when the State Duma conceived the law on response sanctions to the West; The ban on the import of drugs then did not pass directly, but indirectly - passed. The editors of May 12, 2018 Government Decree No. 1289 established: If there are two domestic manufacturers of the medicine, foreigners fly with whistles past tenders to centralized purchases. Then, on June 29, 2018, a letter of the Federal Antimonopoly Service appeared (AC/49132/18), and the sale of drugs imported in the Russian Federation, at a price above the maximum (we are talking about the list of “vital”, where “Vincristine” and other similar ones are fixed) became impossible.
Thus, they blocked - exactly fascist invaders, and not their people - the last loophole for legal import of foreign drugs.
Well, all these innovations were superimposed on the famous 44th Fedzacon 2013: the main criterion is not quality, but price, so original drugs cannot compete with generics.
And what foreign medicines can be here now? How do they leak?
The outcome of their suppliers continues. In September, the head of the subgroup in the State Duma “To improve the procedure for state registration of drugs” Alexander Petrov (“ER”) said that more than 720 drugs were removed in the Russian Federation from registration. In July, the first deputy head of the YP faction in the Duma, the head of the group “to improve the legislation in the field of drug circulation”, Andrei Isaev reported that last year foreign manufacturers filed applications for recall from the Russian market of 900 drugs. At the same time, in early December, another State Duma deputy from the same active faction, Mikhail Starshinov, demanded that the Prosecutor General “give a legal assessment of the refusal of medical institutions from acquiring original drugs and fixed side effects”. (Well, yes, the drug crisis in the country is caused by the political course of this country, completely supported by the "EP", and to make doctors extremely came up with it.)
After the detention of a Muscovite E. Bogolyubova for smuggling (received a parcel with frisium for a sick child) a scheme for the purchase of unregistered drugs appeared - but it does not pass for Vincristine and dozens of other drugs, since they are legalized in Russia. There are simply not physically in Russia.
Even the largest regional officials and deputies will not help. It is impossible to buy centrally for non -budget money and it is impossible to transfer to the hospital as charity. To buy there and sell here-also: in Kyiv, Minsk, Alma-Ata, Vincristin Teva is many times more expensive than should be sold in the Russian Federation, so the business will not work, the state’s losses will immediately attract the attention of the state. Quote from the appeal of the Krasnoyarsk Zachs to the Minister of Skvortsova regarding the lack of an alternative to the domestic "Winkristin":
“According to the current legislation, medical and preventive institutions of the Krasnoyarsk Territory, the Ministry of Health of the region, pharmacy organizations, charitable foundations of the region and commercial organizations are deprived of a legal opportunity for the acquisition of a drug drug of another manufacturer. [...] This situation creates the ground for shadow illegal trading in medicines, and also creates the conditions for committing crimes in the field of turnover, putting families before choosing: commit a crime and treat a child or not commit crimes, leaving a child without treatment. According to information obtained from other regions of the Russian Federation, a similar situation has developed throughout Russia with respect to a number of imported drugs: “asparaginase”, “doxorubicin teva”, “Karboplatin Teva”, “Kitril”, “Lomustin Medak”, “Nutalan”, “Temozolomid Teva”, “Cisplastine”, “Citybin”, “Thamida Teva”. "Cytosar", "Etoposid-teeva" and others. "
Skvortsova called the Russian health model “one of the reference”
The Minister of Health Veronika Skvortsova at the All -Russian Congress of Patients (November 2019) said that the Russian model of the healthcare system is one of the reference compared to other countries of the world.“If one of you received treatment in Germany, in Israel, in America, in other countries, then you will look at a completely different way, returning here, how help is organized in Russia. Now, just for a general understanding, our model is one of the reference in the world, ”Skvortsova said.
She noted the presence of a large number of shortcomings in Russia, clarifying that they are local and arise due to the shortcomings in the places of specific officials or doctors.

So the state made smugglers out of mothers. It is only in the plane that passes - "put on the mask first on yourself, then to the child." In the Russian everyday life there is no choice: if you want to save the child - get ready to transgress the laws.
And then listen to Kalebin: “Mother ( by that time, there were already 40 oncomal children in the regional children's hospital, who needed Winkristin Teve. - A.T. ) made a request to the Ministry of Health of the region. A refusal came, they cannot give us the right paper, and without it it is impossible to bring the medicine. We need a consultation in Moscow. But when will it all happen? And will it happen? Sonya cannot be placed by a Russian drug. And how many are so Son in Krasnoyarsk, in Russia? Who will help them? I don’t even want to talk about adults.
I roar from powerlessness, from the inability to do something. Neither my connections, nor my activity and desire to help can change anything. I understand that in our country a person is nothing. The women still give birth.
If this had affected those who should solve this, they would not have to choose between death and the medicine that should not be placed not according to indications, but politically (ideological, import substanting medicine). They would have drove where they should and were treated by working and bringing results. They can afford it. We? No! It’s scary to hurt in our country. Better right away ...
We are still looking for ways to buy this medicine. Through another country, through a German recipe, through some kind of fucking way there. ”
Meanwhile, a veterinarian from the city of the city (in metallurgy and ecological disaster) responded to the cry of Kalebina: “We live in Magnitogorsk, here everyone is connected with oncology: relatives, friends, animals ... To my husband, colleagues also searched for chemistry. Found for 500 km, but there was no recipe on his hands. I wrote out a veterinary recipe, and I arranged a photo of the pharmacy. We are spinning as we can. For a dog with osteosarcoma in Ufa, they found a drug, and colleagues helped to buy and deliver. ” (I don’t call the name of the heroic woman, since the process of Alevtina Khorinyak, who did not write out the recipe for an anesthetic cancer patient, dying from pain shock, did not pass before my eyes.) So, “there is one package,” said the veterinarian.
The score went to the clock. Do not send by mail - freezes. Pavel volunteered to deliver from Magnitogorsk to Moscow (an outsider, a disabled person with cerebral palsy), he was found through social networks quickly, but he had to look for a volunteer at the airport, who was transporting the drug to Krasnoyarsk, he had to. Only 10 minutes before landing, he achieved the announcement of the speakerphone. No one came up. And he was not allowed into the control zone. And again they gave an announcement through social networks in the hope of the flights of the next day (then the country enthusiastically discussed the transportation on the plane of a fat cat), and a man was found to save another person. The plane landed, the injection of Sonya was done. Her mother found another batch of medicine in Vladivostok.
In the neighboring chamber-13-year-old Bogdan, acute lymphoblastic leukemia.
While the Romanian “Winkristin” was injected, the treatment went without “side effects”, after the domestic Bogdan, the strongest pains arose, shouted: “Mom, let my legs be cut better, I can’t do it anymore.”
This is told by his mother, who has been around all this time. Bogdan is now being treated from the effect of the Russian “Winkristin”.

Medicines are brought secretly, from under the floor, from Israel, Belarus, Germany. Krasnoyarski, who left the poisoned city and the country, help: the diaspora is great and responsive. The channel from Kazakhstan was distributed, the Ministry of Health is now checking the oncocenters “on the fact of the detection of expensive anti -cancer drugs in Russia purchased by a single distributor for the treatment of Kazakhstanis”. These drugs differ - they have seals of Kazakhstani medical institutions and stamps "Free".
Since the address where you can still find “Winkrisin Teva” was designated - veterinary clinics, searched there. Four ampoules - from veterinarians from Khabarovsk, four more - from their colleagues from Moscow (transportation of ampoules of 250 rubles to Krasnoyarsk cost ten thousand).
This is not a Christmas story at all. Although in rare moments it reminds. Bogdan and another 11 Krasnoyarsk children (96 doses) were half -Legally imported by the Israeli “Winkristin Teva” from Ukraine. “Ilya, they reached. In integrity. We are jumping with joy! " - They wrote to the mother Ilya Zaitsev, deputy chairman of the Committee on Health and Social Policy of the Krasnoyarsk Sachs. He now coordinates this difficult work, he is on the border, in the field of gray schemes - between death and children's life, between legal and not, the state and the people.
There are documents that they will certainly be read in the next world or on this, if there is someone to judge about Russia of Putin's decades. The first, “cloud” will be concluded on manuscript pharmaceutical notebooks, in them - the name and phones of tens of thousands (at once) old people and disabled people who have been waiting for their tablets for months. And this is in Krasnoyarsk alone, supplied by no means worse than the rest of Russia. Lists of "abundant" in hellish pain, a written invitation to the torment, or even to death. Those very delayed preferential recipes, constructed by officials, a medicinal crisis from which Khorinyak was born, for example, the mentioned case. Yes, and several other examples of inconspicuous heroism against the backdrop of meanness spilled in the air.
The second decade will be judged by Facebook by the non -partisan deputy Zaitsev, who decided to help the people. Well, if Facebook is closed in Russia, Zaitsev’s papers will remain - he is a deputy, they have a paper correspondence.
Why hares? So people are arranged. Do we remember a lot about ancient Athens? How many people will be so many answers of non -present. But about Sparta - two answers. Three hundred Spartans and the fact that sick children were dumped from the cliff.
So from Putin's Russia, Chechnya and Crimea will remain. And - Sonya, Bogdan, Alevtina Khorinyak and Zaitsev’s records. Several of them:
The opinion of the deputy of the Krasnoyarsk Zaks Ilya Zaitsev
I am often asked about the situation with the inability to buy medicines: are they on purpose? And each time I answer: I hope not. It is worth declaring laws, decisions, orders and clarifications in several years, it becomes clear that they were not accepted at one moment, apparently pursuing a tactical goal-to do something for something here and now. But the whole consequences, no one appreciated the overall picture. As a result, we have what we have. And what we hear is that the problem is in the field, and not in the system. But this is not so. And I have more and more appeals from other regions. Today were Tyumen and Sayanogorsk.... Lord, how complicated everything is in the system. How difficult it is to try to change it when everyone seems to understand that for the good, that for the sake of patients who have a name, fate, a chance for the future. When the parents of the children are already frightened by the diagnosis, and they just need support and confidence that everything possible will do everything for a defenseless child. But no. A lot of barriers, explanations, some left-wing non-working ways and routes. And the bureaucratic machine in which any initiatives die without having time to be born. And also the indicators of the system as a whole are a certain average temperature in the country, which does not tell anyone about anything except “improving average indicators”. And also total fear of making non -standard decisions, take responsibility and even recognize the problem. This is based on the results of today's meetings and discussions in Moscow in different departments.
... The press conference of Dmitry Medvedev did not give an answer to the question of what to do with the situation with missing drugs. The Prime Minister, of course, emphasized that there was no task to “cut off” the population from foreign drugs, that it is necessary to find a compromise with foreign manufacturers, that it is necessary to adjust the situation. But all this applies to drugs in pharmacies. So that citizens can purchase medicines for their own money. But what to do with the drugs used in the hospitals of state hospitals - I did not hear the answer, unfortunately. This is state money and, apparently, a state approach. Sorry. We will try further ...
It is absolutely obvious to me that this situation is not a problem of our region. Countries. I often hear the phrase: "You were able to solve in the region." No, they could not. And even the solution that we are now working out can hardly systematically solve the problem. It may cover the deficit for a while. So far, only mothers have found the solution, taking a chance and bought the medicine from third parties, explaining the situation of the transport company, waiting for weeks - they will miss the medicine or not across the border, whether it will come safe and preserved, whether the temperature regime remained and whether they were unknown to whom they translate the latter, a fraudster. And with such methods we definitely will not close the all -Russian problem. I don’t know what will come of it, but since our edge was able to raise this wave, I will ask you to share this record. I will collect appeals from the region and from other regions. ”
In Russia, every minute, now and more often, is a diagnosis of Cancer. If there is no way to quickly leave and be treated abroad, neither the status, nor the money will protect either you or your child. The previously constructed class society in Russia-2019 gives system failures, its boundaries are thinned, no one needs no one here, the social disaster has already occurred, the Russian anthem is “nobody sorry, no one”.

This is not the first medicinal crisis in Russia, but the first one is through the political and pierced by a lie. When uranium tails are possible from abroad, but medicines from there are not, when hospitals, before Russia are quite normal, turn into the same scenery as courts, parliament, universities, when huge money goes to imitate treatment at best useless pills. Prior to import substitution in our country, the same thing that is happening around the world happened in our country and the patient. Now patients in hospitals (if they have the opportunity to get a real medicine and if they are not in a psychiatric hospital where you will be placed at the wall, waiting for you to swallow the pill) they lie to the doctors, throwing out domestic pills and secretly accepting foreign ones.
Doctors are now simply forbidden to agree to such a replacement and speak critically about domestic drugs. And everyone lies to everyone.
This, by the way, is to the reliability of the statistics of unwanted reactions from Russian drugs: what will it be if it is treated not at all what is written in the history of the disease? We have the content of basic things, the concepts of the meaning of medicine.
Why Krasnoyarsk was on the tip, of course. This is Siberia: it supplies all around with gas, only it is not supposed to be, heated by coal, these are gigantic volumes of smelting of aluminum, gold, metals of the platinum group, etc. All this is cancer. Children's cancer. And every time children's deaths hut on the self -awareness of the city, which could be allowed here, every child is from gold, sleep on gold, walk in gold, if not ... such “not” - above the roof, but they explain anything.
Can this be projected throughout Russia, so rich and unable to give children real medicines, and not a fake? No. The Krasnoyarsk Territory is an exception, it is from very few Russian regions where doctors are still located, that they are not afraid to register unwanted reactions (HP) from drugs. , когда у нас было полно недовольных импортозамещением еды, но жалобы на отечественные заменители лекарств были единичны (а раз их продолжали закупать и ими «лечить», то этот бизнес набирал силу), завотделением клинической фармакологии краевой клинической больницы, главный внештатный специалист по клинической фармакологии минздрава Красноярского края Евгения Курц чеканно сформулировала «Новой»: «Подавать извещения о НР на лекарства — обязанность врачей, закрепленная законом». И край по количеству поданных извещений — в российских лидерах, и с 2011 по 2018 год количество извещений о НР в краевой больнице выросло более чем в 10 раз.
Жертв импортозамещения в России не считают: ну кто скажет, что именно поэтому умер ребенок, если у него был рак. На то и рак, чтоб от него умирать. В Красноярске молчать не стали. Зайцев говорит прямо — регионы боятся говорить об этой проблеме, потому что в ней велика политическая составляющая.
Боятся, похоже, все причастные — депутаты, врачи, губернаторы. Не боятся только матери.
Officially
Президент Путин на пресс-конференции 19 декабря:
— Конечно, мы должны добиваться того, чтобы детям уделяли особое внимание. Вот сейчас, по лекарствам, например, в отдельную категорию вывели детские рецептуры. Что касается благотворительной деятельности и того, что делается на федеральных каналах – обращениях с призывами о помощи конкретным детям – эти призывы, и передачи по этому поводу, их же нельзя запретить. Но в общей картине они мало что меняют. Здесь в целом нужно настраивать работу по детской медицине и выводить ее на новый уровень. This is true.
Правительство предложило сейчас ряд решений, они начали реализовываться. Одно из них (как они сами считают, очень важное) — это регистрация новых цен на медицинские препараты при проведении аукционов. Это одна из новаций, которая должна быть осуществлена в ближайшее время, решение принято.
Что касается редких, орфанных заболеваний, которые требуют высокой степени дотаций. Они самые дорогие. Часть из них закупается организованным путем. Часть – неизвестна.
Но мы не должны лишать людей возможности использовать эти лекарства, их нужно регистрировать. Но не нужно забывать о развитии собственной отрасли. Мы ведь в СССР в большом объеме закупали в так называемых странах Восточной Европы. Сейчас мы активно развиваем собственную фармпромышленность. В 90 стран мира мы сейчас экспортируем наши препараты. This was not there before. Если мы туда экспортируем, значит, качество этих препаратов признано качеством мирового уровня, по-другому бы иначе их не брали.
Я боюсь ошибиться, но примерно 780 млн лекарственных препаратов были проданы за границу. Но есть вещи, к которым нужно подходить тонко, люди привыкают к определенным препаратам. В том числе иностранного производства. Нужно это иметь в виду и дать возможность пользоваться этими лекарствами. У Минздрава есть здесь определенные предложения, думаю, в ближайшее время они будут реализованы.
From the editorial office
Вероятно, президент отвечал на вопрос о стране, где действует «эталонная» система здравоохранения, нарисованная в докладах министра Скворцовой. Где не нужно искать баланс между «интересами отечественной фармацевтической промышленности» и жизнью девочки Сони. Единственным решением проблемы лекарственного кризиса в сегодняшней России, на наш взгляд, может стать немедленная отмена бесчеловечных законов и немедленная закупка препаратов за счёт бюджета. И это — не считая отставки Скворцовой, которая несёт за это политическую ответственность, но делится ей с президентом.