A Family From The Stavropol Territory Is Suing For "Spinraza" For Their Son

A Family From The Stavropol Territory Is Suing For "Spinraza" For Their Son
A Family From The Stavropol Territory Is Suing For "Spinraza" For Their Son

The parents of the six-month-old Savely Boyko from the Stavropol Territory are suing for the right to receive the drug, Spinraza, necessary for the baby. This expensive drug helps slow the development of spinal muscular atrophy (SMA), a severe genetic disorder. The family has already won one trial, but at the end of December the regional Ministry of Health filed an appeal.

“When the results of Savushka’s genetic analysis came to my e-mail, I immediately sent the letter to my husband. He asks me: "What is it, what does it mean?" And I say: “This means that it will be necessary to take 165 million somewhere - or there will be a sad result,” recalls Anastasia Boyko, a resident of the Stavropol Territory.

Her youngest son Savely was born in June 2020. Perfect pregnancy and childbirth, excellent tests and screening results - Anastasia, who became a mother for the second time, could not get enough of it.

“When we were two months old, we began to notice: something was wrong, he wasn’t holding his head at all. And my eldest son is only three years old, everything is still fresh in my memory, - says the woman. - We started going to the pediatricians, they prescribed a massage, they said that they were just weak, but everything is fine. The massage didn’t help. We got a referral to a neurologist. She just started looking at Savely - and how she starts to swear at me: they say, where I was before. They were immediately sent to the geneticists. The test results came on September 24th."

The baby was diagnosed with type I spinal muscular atrophy. SMA is a severe genetic disorder in which all muscles, including those responsible for breathing, gradually atrophy. There are three approved drugs in the world that help with this disease: Spinraza and Evrisdi are registered in Russia, Zolgensma is still at the registration stage. These are some of the most expensive drugs in the world: for example, the initial course of Spinraza alone costs about 48 million rubles, and the drug must be taken for life. It is enough to inject Zolgensm once, but the price of one injection is over 160 million rubles.

“My husband and I simply had no words when we learned about Savushka's diagnosis. Well, they burst into tears, voted, began to visit doctors,”Boyko says.

In the regional hospital, according to the woman, no treatment was prescribed. The family received a muffler, an Ambu bag and a non-invasive ventilation apparatus from funds for a while or bought with money raised with their help.

“Every day we go for a massage, plus I do it myself in the evening after swimming. Savely loves to swim in the bathtub: there is freedom of movement, he turns over, lifts his arms and legs - something that he cannot do on land, "Anastasia sighs.

According to the law, if a medical council decided that a patient needs therapy with a certain drug, the regional authorities are obliged to purchase the drug, regardless of its cost. Doctors of the regional and federal clinics have appointed Savely "Spinraza", there is also a recommendation from the doctor of the state clinic to conduct therapy with "Zolgensma". However, neither the conclusions of the council, nor the court won by Boyko on December 2 did not lead to the desired result. The regional Ministry of Health never issued Spinraz to them, sending a letter that in 2021 Savely's treatment will be "provided by the government of the country."

We are talking about the "Circle of Kindness" - a fund to support children with serious and chronic diseases, including rare ones. It was created in early January 2021 and aims to help critically ill children, including patients with SMA. The support will be provided on funds received from the increase in personal income tax for income over 5 million rubles a year - in total, in 2021, the fund from this source is expected to receive about 60 billion rubles.

As the Minister of Health of the Russian Federation Mikhail Murashko emphasized, the regions will finance the treatment of sick children before the “Circle of Kindness” has started working (the organization, according to him, is in the final stage of being included in the work). Deputy Prime Minister Tatyana Golikova also spoke about this earlier: “Neither the federal budget, nor the budgets of the constituent entities of the Russian Federation can reduce the financial support of privileged categories of citizens who receive medicines when creating this new instrument. Funds in the budgets should not be reduced, but, on the contrary, even increased depending on the changing therapy”.

In the case of the Boyko family, this did not happen. On December 31, Anastasia Boyko learned that the regional Ministry of Health had filed an appeal. “The date for the meeting has not yet been set,” she says. - We have a very difficult period. Savushka is not yet accustomed to the NIV device, with which he needs to sleep, and now his teeth are starting to break. In general, we do not sleep at night and do not get off our hands."

The baby is distracted only when his older brother, three-year-old Rodion, comes up to him, continues the boys' mother: “Rodya is so smart (sometimes even too much), talkative. A little of his energy Save - and there would be two ideal children. They have love with their brother. In general, Rodya is a busy guy, but as soon as he approaches Savely - that's it, he has a smile from ear to ear: his brother has come! Rodion knows that his younger brother is ill, we explained to him. He only asks: "Will we cure Savushka?" I answer that we will definitely cure, we will fight for Savushka together."

The press service of the Ministry of Health of the Stavropol Territory said that it was “impossible to give a full answer” to RT's request for drug provision for patients with SMA due to the fact that this information refers to medical secrecy and personal data. Meanwhile, the Stavropol Territory Committee for Public Procurement, according to the portal zakupki.gov.ru, placed bids and held electronic auctions on January 13, 2021 for the purchase of 135 doses of Nusinersen ("Spinraza") with a total value of more than 214 million rubles.

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