A girl with a grease weakens every day. The authorities of Tatarstan refuse her medicine even by court decision

20-year-old Elina Abdrashitova from Kazan is the heroine of the documentary “New” about patients with spinal muscle atrophy (SMA) “ Dear People ”.

This name is not by chance. Patients with the lubricants need one of the most expensive drugs in the world. The drug "Zulgensma" costs $ 2.1 million, Spinraz - $ 750 thousand in the first year of treatment, Euresdi - 340 thousand dollars per year.

The last two medicines, patients should take until the end of life. They are registered in Russia and should be purchased at the expense of regions. But local authorities are reluctant to do this. Most often they refuse, referring to the lack of money, and patients and their parents are forced to go to court.

In January, the President of Russia signed a decree on the creation of the Circle of Good Foundation. The goal is to support patients with rare diseases: to provide them with medicines, medical products and technical products for rehabilitation.

But it is only about children. But what about adults? Elin Abdrashitova was not included in the list of wards that the fund will help. And the authorities of Tatarstan are in no hurry to purchase the drug, despite the court’s decision. Moreover, the officials decided to appeal it - it was supposedly made with "violation of the norms of substantive and procedural law."

“New” wanted to take a comment from Elina, but she could not talk to us. Recently, Elina feels bad. In January, she was called an ambulance three times. Instead of Elina, her mother says - Raya Abdrashitova.

MONOLOGUE

Raya Abdrashitova, Elina's mother:

- I was 34 years old when I became pregnant. I was preparing for pregnancy, I had geneticists. They asked them to direct me to paid genetic tests, but they refused me, replied: "Nothing threatens you." But it was according to genetics that we were stuck.

Elina was born a healthy child, 10 points on the Apgar scale. And then, at seven months, she fell ill with a viral infection. We were vaccinated with DTP, and the disease turned on sharply.

I started running around the doctors. Wrote to all the best clinics in the world. I thought that suddenly it was a generic injury or an error in the diagnosis. We have no such diseases in the inheritance. My husband and I are from two ends of the world. I am from Uzbekistan, he is from Bashkiria. Distant relatives did not intersect. The eldest daughter was born healthy, and the second ... was sick.

The answer on Elina came only from the "shatta". German doctors were ready to accept us and preear. When she was two years old, we flew to Germany. We were confirmed by the diagnosis. Doctors said that everything is in our hands: good care, nutrition, gymnastics, massage, and if there is a breakthrough in genetics, Elina will live.

We tried to follow the recommendations of doctors. Elina even passed three courses of stem cell treatment. They delayed the development of the disease. Until 12 years old, she was stable: she was sitting in a stroller, her arms and legs were strong, but did not walk.

And then there was a medical error.

Elina fell ill with bronchitis, and the doctor on duty in our clinic, which was not even officially formalized there, prescribed her the drug Sinecod. This medicine is strictly contraindicated for children with a smell, because it blocks the cough center. For half an hour, Elina went into serious condition. We got into intensive care. By morning, oxygen was only worse for her. The daughters were placed by the tracheostom. For a month I lived in intensive care without leaving the ward.

Elina was able to leave the Ivl and up to 16 years old breathed on her own. But the medical error has become a powerful impetus for the disease. Scoliosis intensified. She had an operation to straighten the spine in Moscow. It cost 3 million rubles. They collected money on their own. And then Spinraz appeared. Talks began about the creation of a fund that will pay for the medicine. But we no longer had to get into the children's register. Formally Elina is an adult.

And then a doctor Alexander Kurmyshkin appeared in our life. It helps smiley free to knock out drugs through the court. Since April, the clinic did not want to conduct a medical commission for us, which is needed for trial. Doctors rounded their eyes: “We will spend such frantic money on you now. This is the whole budget that is given to the population of Kazan. ” As a result, the medical commission was held only in November. And on December 23, the court passed, which we won at the first meeting in an hour and a half. It's just fantastic!

Elina and I were together. She was very stuffy. She turned pale, the judge saw all this and made a positive decision with immediate execution. We exhaled. They thought the medicine would be purchased soon, but no.

On December 24, we were given a writ of execution. The next day, in the morning, we took him to the bailiffs. They had to immediately start production, but in the end they did it only on December 31, a week later. To my question why they were pulling, they answered that they were given the case to the 29th.

Every week we were interested in how the process goes. To which the bailiff once said to me: “In our Tatarstan we have 11 cases with immediate execution, to which the Ministry of Health does not react at all.” And on January 18 we received a letter. Officials filed an appeal with a request to cancel the court decision and refuse Elina in the drug.

Our Tatarstan is impenetrable. There are courts won in the summer for children with a lump. They have not yet been bought. A family from Naberezhnye Chelny with two emoticons picked up a government building several times. Nobody approached them, except for the police. They also did not receive medicines from the state.

Officials are taking time and waiting for the children to be taken away by the feds. Recently, they wrote to me that a list of emoticons was handed over to the Circle of Goods, but Elina is not there. She remained in Tatarstan one of the adult patients. The situation with her is incomprehensible.

A child is 20 years old. She leads a blog, writes a book. She has a loved one who accepted her with all sores. Comes in a day.

But morally we begin to blow out. Permanent papers, expectations, refusals ... Our parents paid taxes, we pay taxes, Elina pays taxes. Her dad is military, we defended the country, but now she does not need our child. It will die faster, the state will have less costs - so what?

I see how Elina is wearing. And the medicine can stop the disease. If we do not get it, according to my sensations, after six months Elina will completely get and be like a vegetable. In January, I called her an ambulance three times. She has bradycardia, pulse 40–45. The disease reached the heart, heart muscle. The respiratory system refuses.

Will we wait for the drug?

***

Elina later wrote a little message to me and asked me to add him to my mother’s commentary:

- Recently, I think why euthanasia in our country is considered inhumane?

And the painful death of children from cancer, from SMA and other serious illnesses, when there are drugs, especially registered in Russia as vital, is considered a normal phenomenon?

Why do officials take on the functions of God and, trying to save money, decide who to live and to whom to die? Why was the constitution needed, which each citizen supposedly guarantees the right to life and free treatment?

Anyone can be in a wheelchair. No one is safe. But in our time, life seems to be nothing.