"We lose children who could cure"

Why the Channel One did not show oncologists on the air of oncologists who require effective drugs instead of cheap substitutes

The release of the program "Time" 6.02.2020. YouTube

There is an update
Added the response of Channel One
Last update - 10.02.2020, 15:33 (MSC)

Correspondents of the program "Time", published on Channel One at 21.00, February 5, were shooting in the center named after Dmitry Rogachev in Moscow, on February 6 - in the children's oncological department of the St. Petersburg Oncocenter.

“On Thursday, the crew of the Time program unexpectedly came to our St. Petersburg oncological clinic,” said Professor Margarita Belogurova, head of the Department of Oncology, Children's Oncology, Children's Oncology, Pediatric Oncology and Radiation Therapy of the St. Petersburg Oncology. - The leadership asked me to postpone all things and chat with the journalists of the federal channel, since they explained that already in the evening in television, a plot of drugs in children's oncology should be released in television. I started up:

“Has someone at the top finally took care of our misfortune? The ice started?! "

With inspiration and in detail about an hour, she answered the questions of the correspondent Alexei Korepanov. For the hundredth time she explained why some domestic generics are bad, and well -known imported ones, with which children's oncologists have been working for the past 25 years, is good; What is unpredictable toxicity and unknown effectiveness; What are the consequences and so on. At nine o’clock in the evening on February 6, I and the parents of our patients clung to the screens in anticipation of the Time program.

They looked from the beginning to the end, but the plot did not come out.

And a few minutes later, colleagues from the center called me. Dmitry Rogachev said that, according to their information, journalists were forbidden to air with this topic. According to the official version, the reason is that "the Ministry of Health of the Russian Federation has not yet decided on its position."

“The filming group of Channel One interviewed me and my deputy Alexander Karachunsky. I know that the plot was ready, mounted, but removed from the air. Why - draw conclusions yourself, ”said the“ new ”general director of the center named after Dmitry Rogacheva D.M. N., Professor Galina Novichkova. “Nobody called us, did not explain anything.”

“Teleporters needed positive, but we had no positive,” adds the deputy director of the center. Dmitry Rogacheva D.M. N., Professor Alexander Karachunsky. - I was not very surprised when the plot was not shown by replacing it with a report on the shortage of medical masks in Russia. And after, according to insider information, he learned about the allegedly imposed ban on the display. The Ministry of Health not only “has not decided on its position”, he does not at all control the situation with medicines. He only registers them, and then it takes a year or two in each case, although extremely important decisions should be made much faster.

It controls the drug market in Russia by the Ministry of Industry and Trade. How is a separate topic.

In my impression, drug trafficking and weapons are tears compared to crime in pharmaceuticals. ”

Import substitution or life?

“The Uncertain Position of the Ministry of Health” is, of course, baby babble. Both parents of cancer patients and doctors are clear as God's day. If for Russian officials (from any ministry and department) the interests of underdeveloped domestic pharmaceutical companies are priority, then our children will be sacrificed.

This was written by the president by the parents of cancer patients from different regions of Russia. Tired of fighting one by one, they are now united in an association (the process of registering the organization is not fast). On January 5, parents sent a collective letter to Vladimir Putin. 531 family signed under it (242 - from St. Petersburg), where girls and boys with tumors of the brain and central nervous system are growing (the authors of the message consciously did not launch the petition on Change.org, limiting themselves only to their closed groups in social networks). The dads and mothers of children and adolescents with cancer tried to explain the country to the president of the country, which is terribly drug import substitution in children's oncology and how important it is to urgently stop it:

Letter to the President of the Russian Federation from parents of cancer patients
“We are witnesses to the suffering of our children caused by heavy side effects of Russian -made drugs. Incomplete list of “side effects”: internal bleeding, loss of vision and hearing, paresis, paralysis, etc. Many deadly side effects can be avoided, only following the treatment protocols, using the original drugs on which these protocols were tested. Domestic drugs did not go through clinical trials for children, the Ministry of Health of the Russian Federation has no statistics ... However, we, parents, in different departments of the country's hospitals, see a huge difference in the action of imported and domestic drugs ... The country's leading children's children's children's children's insanity are invited - the predicted growth of children's deaths, directly related to replacing original drugs by domestic drugs Analogs. We are talking about many thousands of small patients!
About a dilemma - import substitution or children's lives?
The children of our great country have the right to effective treatment and life without relapses of cancer ... "

Putin or, to be precise, the administration of the President of the Russian Federation redirected the letter to the Ministry of Health. January 27, Deputy Director of the Department of Medicifications of the Ministry of Health of the Russian Federation Svetlana Semecheva, referring to four laws immediately, answered parents of cancer patients:

There are domestic drugs, treat them!

A few days later, the parents received the same letter to the word for word from the St. Petersburg Health Committee.

In 2005, Putin visited the patient Dima Rogachev in the Research Institute of Children's Hematology. Dima died in 2007 after surgery in Israel. A few years later, the center was given the name of the child. Photo: NMIC them. Dmitry Rogachev

"Psu under the tail"

“What can you say? “The horses eat oats, and the Volga flows into the Caspian Sea,” Margarita Belogurova commented on a new letter from ministerial officials. - Not an answer, but a formal unsubscription. It is listed that everyone already knows, and emphasized a frank desire not to change anything. In order for something to change in this area, probably loud scandals with severe complications are needed (God forbid, of course!). Should children pay such a huge price for attracting attention to the problem?! This is inhuman. We already see a significant reduction in recovering children with leukemia. The other day, the head of the famous ALL-MB-2015 protocol for treatment in children of acute lymphoblastic leukemia is a professor at the National Medical Research Center for Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev Alexander Karachunsky at a conference in Moscow showed sad statistics: small patients who have been treated recently have results worse than their peers two or three years ago, and only the quality of the drugs changed! At the same time, in children in Belarus, treated according to the same protocol, the results remained the same, since Belarusians still purchase medicines from foreign manufacturers. Our prospects are the most sad, in my opinion. All achieved by Russian children's oncologists in this area over the past 20-30 years will go under the tail.

In the end, we will lose children who could be cured.

We will have nothing more to be proud of, we will roll back, in pre -perestroika, when only 30% of sick children were cured, while now - 80%. ”

"Death is an option"

The authors themselves responded to bureaucratic replies both emotionally and rationally. On the one hand, the mocking and disregard attitude of the Russian authorities towards sick children is obvious. On the other hand, and who else to appeal for help?

“The Ministry of Health, not wanting to delve into the situation with drug import substitution in children's oncology, demonstrates the willingness to follow children's corpses for the interests of domestic pharmaceutical companies,” says Natalya Pervusheva, the mother of 17-year-old Mary with a medullastoma, one of the authors of the letter to the president, the initiator of the Russian Association of parents with oncological diseases. - How many children's deaths, relapses of cancer, how many and what severity of the side effects do our officials need, so that they recognize the need to use original drugs? And how do they sleep, making a decision on an unprecedentedly cruel medical experiment on the children of their country? Or maybe it's time for us to write not to Putin, the government and the Ministry of Health, but right in WHO? The fact that we have here in Russia is a humanitarian disaster! And most importantly - bureaucratic hypocrisy:

Support for the state, maternity capital, then yes, give birth, butterfly, but if anything, we will treat anyone. ”

“Once Murat explained to Napoleon the reasons why he lost the battle. He said: “There are 40 reasons, firstly, there were no guns ...” Napoleon interrupted the marshal: “There is no more reason.” The same is with medicines in children's oncology, ”says Tatyana Mukhlaev, the mother of 15-year-old Oksana with a rare dangerous brain tumor, who signed the letter. - In Russia, in line with state policy, the original medicines proven by clinical trials for the treatment of cancer -sick children disappear. It seems to us, parents that after that all other tasks of the state are not important. In my opinion, if officials of the Ministry of Health presented themselves to the parents of cancer patients, the necessary medicines would not have disappeared. I want to ask them. Imagine what they say to you: "Your child is seriously ill." You feel that you are beaten in the stomach, and wander around the corridors of hospitals all day, as if your life hung on a break and you are not able to understand what was happening. Imagine how you sign a form of medical consent,

Knowing that the death of your child is an option.

Imagine this horror, imagine loneliness. Imagine. We do not want you to be in our place. This is something that you can’t wish anyone. We just want to treat children with effective medicines that will give them a chance to become adults. ”

"There are no reasons for concern"

On February 4, after the desperate requests of initiative parents of cancer patients from all over the country did not read and did not hear the president and ignored the Ministry of Health of the Russian Federation, the doctors “knocked” at the same cabinets. 142 Russian oncologist and hematologist called on officials from health care to establish the purchase of imported drugs for children with cancer. In a collective letter, specialists jointly opposed the use of domestic generics in the treatment of domestic generics, identical to a patented company-developer, but produced and sold after the expiration of the patent. According to doctors, these drugs have severe side effects. In addition, in their appeal, doctors insisted on the accelerated registration in Russia of vital drugs of original production with proven effectiveness.

In the response, Roszdravnadzor said that "complaints about unwanted reactions to generics, on the basis of which could be canceled or suspended use." The Pharmaceutical Bulletin newspaper tried to add persuasiveness to this statement by several publications: “Domestic developers and drug manufacturers believe that doctors are condemning paints.”

“There is a lot of politics and marketing in this matter - just more comfortable and more profitable doctors to cooperate with Western pharmaceutical companies,” Professor Andrei Gavrilov, professor of the pharmacy department of the Ural State Medical University, commented on the situation in an interview with the “pharmaceutical messenger”. “All domestic drugs made on the market meet the requirements of pharmacopeal articles ... If Roszdravnadzor does not find violations, then there are no reasons for concern.”

Well, if the death of children who could live, and not be sacrificed by import substitution, this is not a reason for concern, then it is clear why this topic is prohibited with us. Here is such an evolution of censorship on the GOSTELEDRIO: before it was impossible to show children who go to rallies, and now children who die in the interests of the state.

PS
Channel One contacted New
On Monday, representatives of Channel One contacted the New Gazeta. Due to the fact that the editorial request to the address of the office was sent on Saturday evening, they did not have enough time to prepare an answer. We have not taken into account this, sorry.
It turned out that the material about the situation with the provision of drugs of cancer patients is in the work and can be shown on the air of Channel One later. The channel did not give preliminary promises on the timing of the show. However, the New Gazeta confirms that all the quotes given in our material are strictly documented.
We will be happy to attract public attention to this problem, including the forces of colleagues-journalists. We are also waiting for a response to a request sent to the Ministry of Health of the Russian Federation.
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