"We live in an era of genocide"

From Russian pharmacies, drugs disappear from the list of vital and necessary drugs. News about drugs are increasingly reminiscent of reports from the front. Nobody counts victims of import substitution policy

Foreign manufacturers of drugs applied for the review of 900 drugs from the Russian market, at the end of August the first deputy head of the United Russia faction in the State Duma Andrei Isaev said .

A month ago, Alexei Maschan, Director of the Institute of Hematology, Immunology and Cellular Technologies of the NNPC Dgoi named after Dmitry Rogachev in an interview with Novaya Gazeta spoke about the disappearance of original drugs for the treatment of cancer, predicting a jump in mortality, if the situation does not change.

According to RBC, since the beginning of this year, almost 30% of auctions for the public procurement of drugs have been disrupted. For the first half of the year, 2.8 thousand tenders were announced for the purchase of insulin, and 692 applications were disrupted from them. Contracts were broken due to the too low price indicated by customers.

In this situation, the interlocutors of “such cases” blame the policy of the public procurement of drugs in 44-FZ, where the main criterion when choosing a supplier is price, not quality. Manufacturers of more expensive original drugs do not withstand price competition with generic manufacturers and leave the market. Since 2013, doctors have no right to indicate in the prescription the trade name of the drug, but only its international non -parted name (main active substance). You can achieve the appointment of a particular original drug if the medical commission recognizes side unwanted effects from taking generies. But in practice, the right drug can still not be.

We are killed

A new wave against total import substitution of drugs last week was raised by parents of children with cystic fibrosis. They learned that the victims of the current drug policy fell vital intravenous antibiotics “Fortum”, “Tienam” and “Kolistin”. In particular, a document was published on the Facebook Foundation on the Facebook Foundation, in which the Russian representative office of the GSK pharmaceutical company, the manufacturer of Fortum, informs partners that the drug will not be supplied to Russia anymore. According to patients, these drugs have been replacing with cheaper analogues for a long time, but the departure of drugs from the Russian market scares people with cystic fibrosis in that now it will not be possible to buy original drugs in pharmacies. Two petitions created by parents on the Change.org platform have already collected more than 40 thousand signatures (about four thousand patients with cystic fibrosis in Russia). And in a flash mob running on an instagram under a hashtag #return_mv_lek on more than a hundred posts in which people tell their stories of the struggle for life.

“Parents have a quite logical panic. We lose the proven drugs. We are not waging a curtain total war against generics. Many of them have long proved their effectiveness. But now we have learned that highly important intravenous antibiotics who have no replacement for all people with cystic fibrosis leave the market, ”explains new petitions and a wave on social networks Irina Dmitrieva, the mother of a child with microcycidsis and the head of the regional public organization in the same breath.

Cycassocidosis is a rare genetic disease that affects the internal organs, primarily mild. It is impossible to cure cystic fibrosis , but timely and effective therapy allows patients to feel better and extend their life until mature. The main enemy of people with cystic fibrosis is bacteria and infections that burn the affected lungs, so the range of potent antibacterial drugs is really vital.

“Patients with cystic fibrosis receive huge dosages of intravenous antibiotics, and any error in the drug, insufficient cleaning, poor -quality raw materials, which is often used in cheaper analogues, can lead to irreversible consequences, kill the liver and kidneys. Even simply reduced effectiveness of the drug can threaten life. To date, all patients entering the hospital receive only drugs from their dubious levels of manufacturers.

Suggesting with a drug containing an insufficient amount of active substance leads to the fact that the body in the future cannot withstand infections. The child lies in a hospital with an exacerbation, a high titer of infection in the lungs, undergoes a course of several intravenous antibiotics in large dosages and is written out in the same condition as during hospitalization. He did not receive treatment. This is just a formal thoughtless spending of budget funds.

Ineffective drugs lead to large expenses, since the disease goes into a more severe form, complications appear, this leads to the need for more frequent hospitalizations. But how to convey to officials that you can’t mow everyone under one comb? Legislators do not take into account the features of chronically seriously ill people. If the course of antibiotic treatment usually lasts five to seven days, then people with cystic fibrosis take antibiotics for weeks, and sometimes months. Therefore, we all hold on to proven drugs. When they leave the market irrevocably, we understand that we are left alone with analogues from China, Russia and India, this causes panic, ”Irina Dmitrieva explains the situation. We are all afraid of experiments on our children.

On the side effects and deterioration from replacing Kepkrakam, Clonosepam, Topamax, Levhetinol, “Levertinol” “such matters” complained at once by several parents from Kaliningrad, Moscow and Voronezh. In children with epilepsy and other severe neurological disorders against the background of the transition to substitutes, the condition deteriorates sharply, convulsions are intensified, and signs of cancellation syndrome appear. Parents in the hands of the decision of the medical commissions that the negative dynamics is caused by the replacement of the drugs. In some cases, it is possible to achieve an individual purchase of the drug by the trade name (that is, the original), but each time you have to wait for the drug for several months and look for it by pharmacies, bring from abroad or look for drugs on the black market that is increasingly formed in Russia.

“In the black market, you have to look for such simple drugs as prednisone (included in the List of the Zhnvlp), which disappeared from pharmacies in the summer,” says Alexander Savensky, president of the League of Patients. - And the worst thing is not even that he disappeared, but that the Ministry of Health was not ready for this at all. The officials took six months just to understand and admit what happened. The Ministry of Health learned about the torn auctions on insulin from the publication of the study of RBC. The situation with drugs is no longer controlled. ”

A cat in a bag

The fear of new ones is not a fact that Saversky is well understood by good, but obviously cheap drugs. He considers the absence of a full objective monitoring of the consequences from the replacement of drugs a key problem. He considers the system that is currently existing in Roszdravnadzor ineffective, because doctors in Russia do not declare unwanted phenomena so as not to be extreme.

Doctors now often do not even know what the patients are accepted for their purpose - since the opportunity to prescribe a specific trade name is prohibited. The international patented name can be suitable for a dozen drugs with one active substance, but of different efficiency and side effects.

“In this situation, you can change anything to anything. There is no objective information. The state considers any statement about side effects for some generic. But how many such isolated cases are in the country is unknown. According to the FAS, all drugs registered in one MNN are the same and interchangeable. If the drug is registered according to this indication, you can even kill yourself, proving inefficiency and side effects, it will be purchased, ”Saversky is sure. He says that more than one patient community has broken his teeth about this position. And the petitions will not affect this.

The situation in which the doctor does not have the opportunity to prescribe the desired drug, and accordingly control the course of treatment and the result, Saversky considers absurd.

Patients of diabetes , complex neurological disorders, asthma, and oncological diagnoses also complain about the random replacement of drugs.

“For patients with diabetes, not even generics are terrible, but the Czechard with the replacement of drugs,” explains Mikhail Bogomolov, endocrinologist, president of the Russian Diabetic Association. - Let them select the drug of one Russian manufacturer, but would be given stably for years. Due to the notorious order of the Ministry of Health on the prescription of drugs according to MNN, neither the attending physician nor the patient knows which drug will be issued in the pharmacy. There is a monthly replacement of one drug to another. This leads to an increase in complications. The Russian Association of Endocrinologists for the past 30 years is tribela, that the transfer from the drug of one manufacturer to the drug of another manufacturer must be made in hospitals. But the last and a half have stopped talking about one and a half. ”

We are treated from under the floor

Five -year -old Ksyusha from Khabarovsk has blood cancer. Ksyusha has already undergone 10 courses of chemotherapy and experienced the consequences of the import substitution policy of drugs. When a year ago, Khabarovsk doctors suspected Marina’s little daughter (the name changed) oncological diagnosis, she immediately decided to bring the child to Moscow. The attending physician issued a referral to one of the capital's federal centers, but the head of the signed direction pulled out of the mother’s hands. Marina is sure that there is an unspoken indication not to let the patients for treatment in the center so that the money allocated for chemotherapy does not flow out of the regional budget.

One course of chemotherapy, according to her, costs from 300 to 700 thousand rubles. In Moscow, Ksyusha made three biopsy to make an accurate diagnosis and choose treatment. But the exact form of one of the varieties of myeloid sarcoma could not be established and could not. The very first course of chemotherapy Ksyusha was made with the Russian Cytosar. There was no original German drug then in the clinic. And Marina, out of inexperience, did not even think that she needed to intervene in treatment and find out such nuances. “The Russian“ cytosar ”burned all the mucous membranes, they came out with bloody scraps with vomiting and diarrhea, there was a terrible stomatitis, just a bloody mess in his mouth. For two and a half months we pulled the child out of this state. It lay almost without movement, on intravenous diet. All blood indicators fell. ”

The next according to the protocol had to skip the course. Ksyusha would simply not survive him. While the girl was restored, the tumor type clarified and changed the drugs. "Cytosar" was canceled. In the new scheme, one of the key drugs was Winkristin. Also a victim of import substitution.

“The original Israeli“ Winkristin Teva ”we buy ourselves. He is not in the clinic. Instead, a Russian analogue. But there are a lot of side effects from him. My child screamed in pain in the jaws and aches in the bones, the boy in the neighboring chamber simply took off his legs. Everyone who is with us in the department, as a result, buy the original “Winkristin Teva” via the Internet. Now I control all the drugs that drip ksyusha so that these are original drugs, not analogues, ”says Ksenia Mom. The effective antirum drug that was given to the children at the beginning of the year disappeared, according to her. The one that is given now is cheaper and does not work at all. Children on it "pour further than they see."

Lida Moniava: “This story will be repeated a few thousand times”

Marina agreed to talk about ordeals with medicines only on condition that we will not indicate the clinic in which they are treated. Because doctors violate the rules using drugs purchased by parents. A few years ago it was prohibited. “It turns out that we are being treated from under the floor. But ordinary doctors even better know us about the consequences from the Russian “Winkristin”, but they are interested in treatment, therefore, bypassing the rules, they introduce original drugs that we buy ourselves. ” The same story, according to Irina, with the drug “Oncaspar” (one of the key drugs in the treatment of lymphoblastic leukemia) - many parents get into debts, take loans and buy this drug themselves. For the course of treatment, five ampoules of 200 thousand rubles each. Clinics receive a Russian substitute that must be introduced in large volumes, it is more difficult and causes different side effects.

With the disappearance of the vital drug “Winkristin Teva”, however, not only Russian oncologists collided. In May, the Israeli manufacturer decided to stop the release of the drug. Then American oncologists admitted that the drug does not have alternatives. According to Novaya Gazeta, in the United States a petition calling for the manufacturer to resume the production of Winkristin was signed by 215 thousand people. Now Pfizer is trying to compensate for the Vincristine departure from Teva from the world market.

Step back to the abyss

The interlocutors of “such cases” believe that the situation with drugs will nullify the many years of the doctors. “The result of poor provision of vital drugs has now led to a rollback for 20 years, when again there are more and more cases of the occurrence of the terminal stage of the disease in childhood in different regions of the country. A return to the past and to early losses should not be allowed when, on the contrary, more and more sick MVs who are safely surviving to retirement age, ”wrote the oxygen, the director of the oxygen fund on her Facebook on Kygistozidosis.

Indeed, in the last century, cystic fibrosis was generally considered a childhood disease in our country simply because the patients did not live until adulthood. Now in Russia the average age of patients with cystic fibrosis is 25-29 years. In Europe and the United States, it exceeds 45 years. In the West, pathogenetic drugs have already appeared, which treat the root cause of cystic fibrosis. But in Russia it is now difficult to get even symptomatic treatment, the parents of children with cystic fibrosis assure the parents.

“It’s scary that manufacturers leave the market. And in cases where only original drugs can be saved, they will not buy them, ”said Aigul Gubacheva, the chairman of the“ There are no loss ” fund from Ufa. - Only we began to say that in Russia high cure of window diagnoses began to build optimistic forecasts. I really do not want to take a step back and lose patients only because officials achieve import substitution at any cost. ”

“Due to the abandonment of drugs with proven effectiveness, doctors are forced to return to the old treatment protocols when the survival of children in oncgetology was 60%. This is a rollback for decades ago. "

“We live in an era of genocide. I cannot call what is happening differently. A deaf bureaucratic defense makes it clear to everyone that they spit on us, ”Dmitriev’s summarizes sadly.

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The material uses links to publications of social networks Instagram and Facebook, as well as their names are mentioned. These web resources belong to Meta Platforms Inc. - It is recognized in Russia as an extremist organization and is prohibited.