"Do not ask, but beg and sob with powerlessness"

Moscow clinics refuse to give parents to parents with a lubricant key document in a dispute dispute. This may affect the court decision

In April, a resident of Moscow Victoria Zaitseva filed a lawsuit against the capital's department of health. She demanded that her 13-year-old son Yegor, a boy with spinal muscle atrophy (SMA) of the 3rd type, vital medicine. In Russia, only one drug is registered for the treatment of this rare disease - Spinraz. So far, single patients have been able to get expensive therapy throughout the country.

In total, the capital has more than 130 patients with SMA. Part of the parents, after unsuccessful attempts to get the purchase of the drug from the metropolitan authorities, decided to seek medicine through the court. But preparing for the proceedings, they were faced with another problem: clinics refuse to give them a protocol of the medical commission - a key document in a dispute with the Health Department.

Doctors refer to the lack of authority and send their parents to the Morozov hospital, who conducted their children with a medical consultation about the prescription of the medicine. And she again sends to local clinics. Victoria Zaitseva was also in this closed circle. Here's what she wrote the other day in her diary:

From the diary of Victoria Zaitseva
- How is it humiliating to beg ... to beg that it belongs to you by law and by law, for example, the right to life or health.

You come to the doctor, on whom the life of your loved one depends, and you see that they look at you like a vile spider or wet. The same person who must save, treat and protect, despises you. He does not give a damn about your loved one, and even more so on you. And it seems that you are not asking for anything over. You ask to observe the law. And then you don’t even ask, but you ask and beg, sob from humiliation and powerlessness, threaten ... But you are just a mokrin, a vile creature.

We are parents of children, and adult SMA, we all go through it every day. And these trials and disappointments do not add optimism and respect for the state to us, in the service of which are similar to the Nednomets and Ned-Doctors.

Many families of SMA desperately achieved registered therapy in their homeland, went abroad (to Poland, Italy, Germany) and receive treatment there, despite the fact that they are not citizens of these countries. Those who remained are forced to seek the appointment of “spinras” through numerous complaints, endless knocking out inquiries and courts. There is no other way out.

But we will continue the struggle. We will threaten, humiliate, beg, do everything possible and impossible to save our children, our loved ones, our lives.

How can I retreat? How can I look into the eyes of my children if you give up? How should I explain to my son that his life costs nothing, and some person or a handful of officials decided that he did not need to live? As I tell my children that I can’t save their brother, not because there is no medicine, but because I gave up, I was tired of humiliating.

Welcome to our world! My son and about a thousand people with smudges live constantly. Welcome and ... let's change it!

Olga Slobodchikova

Lawyer of the Charity Fund "Help to the families of SMA"

- Our legislation distinguishes the concepts of the protocol of the medical consultation and the protocol of the medical commission. The consultation is held by the Morozov hospital, which then sends parents to the clinic at the place of residence. She must already conduct a medical commission and draw up a protocol.

In reality, this happens. The Morozov hospital holds a consultation, sends parents to the clinic, and there they are offered back to Morozovskaya - supposedly the clinic is not authorized to conduct medical commissions.

Moreover, there was information that, apparently, in connection with a large stream of claims to the Moscow Health Department for clinics, they sent internal clarifications to conduct medical commissions only in agreement with the Department. Moreover, the Department knows very well that the medical commission is necessary, and those parents who are now without a protocol are at risk.

The situation, like Victoria Zaitseva, has several more parents who filed claims. It will be very difficult to defend our requirements in court without this document. The consultation has a preliminary, advisory nature. For our lawsuit, the medical commission is more important, because we refer to regulatory acts that indicate this particular protocol.

We still think about how to influence medical organizations that refuse to issue medical commissions. Perhaps we will attract clinics as a third party. True, in this case, we cannot demand anything from them, but representatives will be able to give clarification in court why they write unsubscribes when the drug is shown to the child and there is no dispute about the diagnosis.

We can complain further to Roszdravnadzor and the prosecutor’s office, file complaints about the clinic. But we have little time: the first meeting on claims to the depots will be held on May 12.