"How to choose whom to save": mother of twins with SMA fights Bryansk officials for medicine for daughters

The twins Sasha and Lera Azarchenkov recently turned seven years old. In 2016, they were diagnosed with type 3 spinal muscular atrophy (SMA). The drug "Spinraza" can save them.

The girls' mother Natalya has been fighting with Bryansk officials for this medicine for a year now. The Azarchenkov family has decisions of several courts on the immediate provision of the girls with the drug, but so far only four ampoules have been allocated to the family - this is not enough to start treating both daughters. Natalya Azarchenkova told RT about her struggle for the health of children and about the problems faced by SMA patients a year after Spinraza was officially registered in Russia.

- How and when was SMA diagnosed in girls?

- The diagnosis of SMA was confirmed in 2016. The doctors did not find the disease immediately. We turned to specialists when we noticed that one of the daughters had a strange gait. From time to time, when she was sick, and the temperature rose, she still began to tremor - her hands were shaking.

At first, the doctors said that it was not critical. But gradually the situation worsened, the child moved less and less by himself every day. The second daughter also began to have problems with motor activity. Then my husband and I decided to take a blood test ourselves and take it to Moscow for research. First of all, we decided to check for AGR. Two weeks later, this diagnosis was confirmed.

The diagnosis sounded like a sentence. We were very worried, but then my husband and I pulled ourselves together and decided that we would not give up, but would try to make the life of our daughters as happy as possible.

- How did the situation develop when you found out that there was a medicine?

- Later that same year, when we learned that Sasha and Lera had SMA, the drug Spinraza was registered in America. Now other drugs are already appearing, but then it was the only chance for the children to recover. A chance for an ordinary life. They will even walk on their own if treatment is started on time.

In Russia, the drug was registered in August 2019, and we were able to hold out until this moment, to stabilize the girls' condition. We worked very hard and tried to keep them able to walk on their own before they start receiving treatment.

However, we still have not received the medicine. From the very beginning, the Bryansk Department of Healthcare has been unable to provide my daughters with this expensive drug.

• © Photo from personal archive

- Where did you go to the girls to agree to provide treatment?

- Wherever possible. We have in our hands the decisions of the city and regional courts on the immediate provision of the drug to the girls. There is a decision of the European Court of Human Rights. But the situation has not changed yet.

For a year now we have been knocking out treatment for our children with active resistance from the authorities. The first time I applied for the drug to the Bryansk Regional Children's Hospital on September 5, 2019 - almost immediately after Spinraza was registered in Russia.

At first we were told that Bryansk could not prescribe this drug for us, because specialists in our area have no experience with it. We were advised to contact the federal centers, and there we received the conclusion of the medical council that "Spinraza" is really necessary for my children for health reasons. 

However, in January 2020, I received a refusal from the Regional Department of Health to provide us with this drug. Then I went to the prosecutor's office, and in February they already sent the statement of claim to the court.

- How has the situation changed after the trials?

- Practically nothing. We won the trial in the Sovetsky District Court of the city of Bryansk back in April 2020, and enforcement proceedings were initiated in May. After that, in June, we were bought two ampoules of the drug for each child.

It's just impossible to start therapy with two bottles, because, as we know, the Health Department does not comply with the procurement deadlines at all, and they are very strict for the introduction of the drug: this is day zero, 14th, 28th, then the fourth injection later. 35 days. In no case should these terms be disrupted.

These four loading doses are required to saturate the body with the drug. Then maintenance doses are needed every four months.

Starting treatment with only two ampoules per child on hand is pointless and even dangerous. If even one loading dose fails, therapy will have to be restarted. And how this will affect the health of children, no one knows.

- What is the opinion of the officials on this matter? Do they understand that it is impossible to start therapy with so much drug?

- The Health Department does not really contact me. The most cynical thing I heard there was that I was asked to take my four bottles and start treating one child. True, they forgot to clarify how I should choose which of the children to save and which not.

- How was the process at the European Court of Human Rights? Were there any statements from the authorities of the Bryansk region after the court satisfied your complaint about their actions?

- Human rights activists from the “Pravovaya Initiative” helped us to file a lawsuit with the ECHR. The trial took place in record time - after four sessions, the court made a decision in our favor, and that says something. But since then, no one has contacted me - neither from the representatives of the department, nor from the authorities there have been any movements at all.

At the same time, we have three more children with SMA in our city, who also have already won courts. And these decisions are also subject to immediate implementation. But for these children, as well as for my daughters, they bought only two bottles of "Spinraza" - the state procurement website says that ten ampoules were purchased in the Bryansk region.

Our authorities apparently deliberately divided the drug between five children - two bottles for each - so that no one could start treatment. After all, it so happens that they seem to have complied with the court's decision, and at the same time they do not need to provide us in full.

We believe that everything here comes down to money, since the treatment is very expensive. It follows from the letters of the Health Department that the cost of treatment for one child for one year is 55 million rubles. Subsequently, however, they indicated a different figure - 48 million rubles.

- How does the delay in starting therapy affect the health of your daughters and other SMA patients in the region?

- While we are waiting for the prescribed drugs, the disease does not stand still, it progresses in all children, real damage is done to their health. The condition of my daughters has already deteriorated. They have the third type of the disease - this is the type in which they can walk on their own until a certain point. We have not yet lost this skill, but if earlier girls could easily withstand half an hour or an hour of walking, now this is no longer possible.

For example, now we get to the kindergarten in forty minutes - for a healthy person the same road will take a maximum of five to seven minutes. The disease is progressing, it is difficult for children to move along the street, they need constant rest.

The children also started to get very sick, because the respiratory muscles also weaken as SMA progresses. Therefore, even minor colds are difficult, my children get sick for at least two weeks, or even more.

If we are provided with the drug and we start the course, it is possible to partially restore the lost skills. The earlier the drug is injected, the less motor functions will be lost.