"Children die in packs"

Treatment of cystic fibrosis is not available for patients in Russia. The Ministry of Health believes that everything is under control

Since the beginning of an acute crisis of access to original drugs for patients with cystic fibrosis in November 2019, ten patients died. The Ministry of Health reports that the situation is under control, measures have been taken. Children die without medication.

In November 2019, the word "cystic fibrosis" became acute and even political. Patients and parents went to single pickets across the country, wrote appeals to all instances. Doctors signed an open letter in support of the patient community. At this moment, vital original antibiotics have finally disappeared from the market. One of the main activists Leila Morozova then wrote on her Facebook page:

"Soon, the children will begin to die in packs."

Then no one attached great importance to this statement. Officials dismissed - think about it, a hysterical mommy panic.

Now it is happening. Around us. Every day. Children die. Without drugs, without systematic medical care. Do not live to endless medical commissions. Do not wait for the donor for transplantation. They die from infection with nosocomial bacteria, because there are no sterile boxes. They are fighting with regional Ministry of Health for the vital drugs laid under the constitution and lose. They lose and die.

Since November 2019, ten patients with cystic fibrosis have died. My country killed them. And it will kill four more thousands of patients with this diagnosis. Vialy reporting that according to the results of inspections of the Ministry of Health, no differences were found between original antibiotics and cheap generics.

I am ashamed to write this text.

While I wrote it, two more have died in three days - a three -year -old child and a twenty -four -year -old guy. A year younger than me.

I am ashamed to talk with mothers who have buried their children. It is scary and painful to think that if they were born in another country, they would not only survive. But they would have grown their children, grandchildren. They would live a full life until old age, simply taking the necessary medicines every day.

Dania, did not live to save

Danya did not survive before the light transplantation for several weeks. He died on February 12, 2019 at the V.I. Shumakov Research Center. He was twenty -one years old. He spent the last year of his life on oxygen. The Island charity fund acquired a portable oxygen apparatus for tribute so that it could leave the house. The body gave up, the only Danin chance was the transplantation of the lungs.

The family of tribute from the city of Tikhvin in the Leningrad Region is almost three hundred kilometers from St. Petersburg. Mom Elena says:

“Dana was diagnosed when he was a year old. We went to be treated for examinations in St. Petersburg. Gradually, the body began to weaken, there were no chances except transplantation. But due to the fact that one light slept, the chest was deformed. Due to these complications, doctors in the best clinics in Moscow and St. Petersburg refused to make transplantation. Too serious contraindications, they said that there is not enough experience for such a difficult operation. But there were clinics in India and in Minsk, where there were specialists who were ready to do the operation and give Dana a chance. ”

According to the law, if the patient receives an official refusal of doctors from transplantation in our country, then he has the right to receive a quota for a similar operation outside the Russian Federation. And our state pays for it.

Elena and Danya chose a clinic in Minsk. A transplant doctor even carried Danins of examination to a consultation to Belgium, where he was also offered to conduct an operation. The cost of light transplantation is $ 137,000. The clinic was ready to accept Dange as soon as the funds entered the account.

Elena has achieved quota for more than a year.

At first, documents were returned to her due to some bureaucratic inaccuracies, then there was not enough certificate, then it turned out that she needed another certificate.

During this time, Danya stopped standing and breathing without an oxygen apparatus. Elena wrote three appeals to the President’s reception. All three times they answered her that they were transferred to the Ministry of Health. Finally, on December 28, 2019, the Ministry of Health answered her that there was no funds for a quota abroad, look for money yourself.

In February, after a hype raised on the Internet around this story, the Moscow Research Center for Transplantology named after V. I. Shumakov replied that he was still ready to accept Dan and perform an operation. The risks are huge, but there is a chance. For a young man, this was the only chance to go fishing again, get behind the wheel, cook dinner, hug mom. Danya died without waiting for the operation, right in the hospital. The heart could not stand it.

In the end, Elena quotes me one of the hospital health workers: “The doctor said that the longer she works in healthcare, the more he is convinced that she chose the wrong profession, it is impossible to help when there is no medicine, there is no technology, but there is one bureaucracy. And it is easier for our state to help strangers than its own. ”

Dima and generics

I am going to meet with Ulyana Dotsenko with the awareness of my own professional failure. I do not know how to take an interview from a mother who buried a three -month -old son. But Ulyana solves this problem for me:

“I know that many parents of the dead children are not able to speak. I could not immediately after the death of Dimochka either. But I worked with a psychologist and lived it. Now I communicate with the fund and activists, if possible I help parents of children with cystic fibrosis. To break this vacuum, you need to tell, talk, share information. If I had this information, perhaps Dimochka would be alive. Yes, and why are mothers in the courtyard and on the Internet discuss, boast of their children, but I can't? I also want to talk about him. I would like to remember and share the fact that I had a son, that he was smiling, that I held him in my arms. "

Dima was born in the Moscow maternity hospital No. 8. The birth was with complications. The doctors did not do the planned cesarean section before the March holidays, they reached until March 12. And on the morning of March 11, when the fights began and the waters left, it turned out that the operation would have to be made emergency, the child suffocated and choked with waters.

Dima did not shout right away. After it has been pumped out, he got into intensive care with asphyxia and intrauterine infection. They could not make an accurate diagnosis in the hospital, and on the fourth day he was transferred to the Children's City Hospital No. 13 by N.F. Filatov.

He had congenital pneumonia and intestinal obstruction. In the Filatov hospital, he had two operations to eliminate obstruction in the intestine.

The Ulyana, which was discharged from the maternity hospital after the cesarean section, took the genetic material to the laboratory, where Dimochka was diagnosed with cystic fibrosis. All the time that Dima and Ulyana were held in the surgical department of the Filatov hospital, they lay in a five -seater ward with another girl with cystic fibrosis. The doctors did not know or did not tell Ulyana and the mother of the second girl about the possibility of cross -infection. In the Dima branch, pneumonia was brought in nosocomial Klebsiella, with which they were discharged home after 2 months.

During his stay in the Filatov hospital, Dima picked up suitable dosages of original antibiotics and other drugs, improvements occurred. But the doctors did not know about the need to carry out constant therapy with antibiotics - or did not want to do it. The necessary inhalations with the drug "Pulmosim" were not prescribed. The child was discharged home with a progressive bacterial infection and pneumonia.

Two days later, he suffocated at home and turned blue, breathing stopped. Parents on their own led Dima to his senses and called an ambulance. On the ambulance with her mother Ulyana, they got to the Morozov hospital.

Here, in this story, medical inaccuracies, an oversight and the human factor end.

Frank hell begins.

Familiar to most people ever encountered a merciless machine of Russian budget medical institutions. Hell, which cost the little Dima of life.

After the ambulance brought Ulyana and her son to the reception of the Morozov hospital, they spent six hours on the bench in the corridor. During this time, the child’s duty officer examined the child once and took blood from him from his finger. There was no other help. The child’s department simply listened and said to adhere to the treatment that was recommended in the Filatov hospital.

In the history of the disease, however, the appointment and information appeared from somewhere that on the same night the child was intravenously introduced “Ceftriaxone”-a generic of the original antibiotic “Rocephine”. Nobody introduced the medicine to the child neither about the preliminary diagnosis or the treatment prescribed by him.

At half past three in the morning, the son suffocated again in a dream. Medical sisters attributed the child to intensive care. In the morning, the doctor explained to Ulyana the orders in intensive care: it is impossible to argue and swear with medical personnel, discuss or dispute appointments and procedures and procedures are forbidden, if they cry or scandal, they will stop letting it off in general, they will give brief comments for five minutes in the corridor.

Ulyana was scared and at first she really did not argue or scandal. Resuscitation doctors canceled all the recommendations of specialists from the Filatov hospital. Although in the extract it was written that according to life indications, it is impossible to change therapy. Despite the appointments of original antibiotics and Ulyana’s proposal to buy drugs on their own and use the drugs that she already had with them, the doctors gave the child cheaper Russian analogues (instead of “Creon” - “microsim”, instead of “Ursofalka” - “Ursodez”).

A few days later, Dima was transferred back to the department, they began to drip an antibiotic - also a generic, Ceftazim. In the department, the child again occurs an attack of suffocation, and he is returned to intensive care.

One of the side effects of “Ceftazidim” in Dima manifests diarrhea, after which the attending physician prescribes original drugs to him. But doctors in intensive care replace Meronem with his cheap analogue of Meropinem, the original “selemicin” - on the dejenic “Amikacin”, “Zivovkas” - on “Linezolide”. Due to the ineffectiveness of the generics of Klebsiella pneumonia, brought by Dima in the Filatov hospital, becomes resistant, no longer amenable to antibiotics.

Deteriorations continue, Dima is connected to the apparatus of artificial ventilation of the lungs.

Doctors specializing in the treatment of children with cystic fibrosis know that the connection of the child to the Ivl reduces the independent work of the lungs and increases the chance of a fatal outcome in the future. Such patients are carried out by non -invasive ventilation of the lungs, but in Morozov resuscitation there are no equipment for this procedure.

After a day, Dima is disconnected from the Ivl, but it can no longer breathe independently, without oxygen. It becomes dependent on the oxygen apparatus for life. During one of the inhalations, Ulyana discovers a child in an adult mask.

When asked what is happening, the nurse snaps that they have no children's size masks.

The next two weeks of Ulyana and Dima spend between the resuscitation and the department, where the child is returned, but almost immediately there is an attack of suffocation, and urgently taken back to intensive care. A few more times are connected to the Ivl, the attacks begin to happen more often. Doctors do not change therapy, although after the use of generics, Dima returns the obstruction that the doctors of the Filatov hospital cured. The food ceases to be absorbed.

He no longer breathes without an oxygen mask, again suffocates to the blue. Ulyana asks the doctor when her son stops choke? The doctor Popova O. V. replies that he would like to know the answer to this question. After 17 days of the child’s stay in the Morozov hospital, there is no diagnosis, the child becomes worse from the prescribed therapy.

Doctors and junior medical personnel do not coordinate their actions, miss the issuance of drugs, confuse prescriptions, systematically do not carry out the necessary manipulations. To any comments and complaints, Ulyana drive her out of the ward.

One day, Ulyana discovers a child without a mask, Dima cries. In dirty diapers, stained with blood and mixture, is connected by bandages in their own feces. At the request of Ulyana to change the diapers and bandages, the medical staff replies that the diapers change once a day the next morning when passing the shift. All day the child lies naked. The nurse forbade him to cover him, explaining this by the fact that the temperature rises otherwise.

Dima finds a CMV infection that was not when entering the Morozov hospital and none of his parents have. The virus is found after transfusion of blood drugs in intensive care. Sepsis and otitis media are developing, mucous membranes begin to bleed.

Ulyana asks to organize a consultation with more competent doctors in the issue of cystic fibrosis from the center in the city of Mytishchi, but it is collected only the day before the death of Dima and with completely different doctors.

Several experts examine Dima and inform the Ulyana that they decided to prescribe a new antibiotic in life indications and hormonal therapy to help the body cope with Klebsiella and herpes, but the drugs are difficult to acquire. The next day they will decide where to get them.

In the morning, Ulyana was called a resuscitator to report that Dima died, and the doctors did everything possible.