“It is impossible to watch how children die”: a family collecting 160 million rubles for medicine for SMA was called to the UK

Petro Novozhilov, a resident of Yekaterinburg, was summoned to the Investigative Committee of the Sverdlovsk Region on February 19. As a man told RT, investigators told him why the daughter of Peter and his wife Svetlana, five-month-old Anya, had still not been given treatment. Three months old, she was diagnosed with spinal muscular atrophy, an incurable hereditary disease in which all muscles, including those responsible for breathing, gradually fail. The most aggressive form is SMA of type 1, such children survive in only 50% of cases up to two years.

“We were terrified”

Anya was a long-awaited daughter - her parents and her elder brother, nine-year-old Andrey, were waiting for her to appear. Pregnancy, according to the girl’s mother, proceeded normally, no one advised parents to take genetic tests, and they did not know about the existence of such a disease as spinal muscular atrophy. The baby was born healthy, 9 out of 10 on the Apgar scale. Newborns are given the so-called “five-point analysis”, which allows them to find out about the presence of five genetic diseases. AGR is not among them.

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By the end of the first month, parents noticed that Anya was unusually sluggish. Doctors at first did not associate this with a genetic disease, explaining everything on hypotension due to neonatal jaundice, but when the situation did not change by the second month, they were advised to take tests. The diagnosis of type 1 SMA has been confirmed twice.

“When we found out about the disease, and then about the cost of its treatment, we were horrified. But to watch the children die is impossible. My wife and I decided to act, ”said Pyotr Novozhilov.

The family opened accounts on social networks and started collecting on the drug “Solgensma” - a medicine with a mechanism of gene therapy. While it is approved and applied only in the USA, manufacturers plan to submit all documents for its registration in Russia only this year. The peculiarity of the medicine is that one injection is enough to cure, while the Spinrazoy therapy (registered in the Russian Federation last year) is lifelong.

However, if the cost of one course of Spinraza injections is about 40 million rubles, then the dose of Zolgensma, according to an invoice issued by the American clinic, costs 160 million rubles.

When the investigators called the Novozhilovs for a conversation, the family managed to raise more than 41 million rubles.

Almost all authorities shrug their hands, the only way of treatment is to collect money that will allow parents to pay for treatment themselves, said Novozhilov’s lawyer Dmitry Ushakov.

“Investigators are in shock”

On February 19, Petro Novozhilov was invited to talk to the regional Investigative Committee. “The investigators are shocked because we were diagnosed on November 24th and there is still no medical treatment. We have the conclusion of two commissions that we need the drug "Spinraza". But there is still no answer on the provision of the drug from the Ministry of Health, ”said Pyotr Novozhilov.

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According to the man, investigators called him to clarify, "what the Ministry of Health is doing to save our child." “From the point of view of palliative care, we have no complaints - doctors come anyway,” says Novozhilov. His wife Svetlana explained to RT that they were given all the necessary equipment: an aspirator, an oxygen concentrator, a coughing device, a heart rate monitor, a non-invasive ventilation device, suitable pillows and suspensions to keep the girl's motor activity as long as possible.

However, all this, unlike the medicine, will not stop the course of the disease, Ani's parents emphasize. “The only drug registered in the country for SMA, Spinraz, was received by only a few dozen families in Russia. At first we also thought to go this way, but this drug is not even purchased in the region, ”says Pyotr Novozhilov.

Indeed, according to the data of the State procurement website, a total of 29 tenders for the purchase of Spinraza by Russian regions were announced. The latter - from the Chelyabinsk region - appeared on February 19. Sverdlovsk region is not among customers.

“The absence of Spinraza in the region was also confirmed by investigators,” says lawyer Dmitry Ushakov, RT.

The governor of the Sverdlovsk region Yevgeny Kuyvashev himself turned to businessmen and politicians on January 17 with a proposal to participate in raising funds for the treatment of Ani Novozhilova. This was reported by the source "URA.RU" in the government of the region.

Bulk Checks

Ani's father suggests that the check in their region began after two-year-old Zakhar Rukosuev died in the Krasnoyarsk Territory. As RT said, the boy also had SMA and was recommended by Spinrase. However, local officials for several months, while Zakhar was alive, refused to buy medicine, citing a lack of funding. As a result, the investigators opened two criminal cases under Art. 109 of the Criminal Code (causing death by negligence) and 293 of the Criminal Code (negligence).

“As a result of the negligent attitude of officials of the regional Ministry of Health to their official duties, a child who did not receive proper treatment died,” the regional insurance department said.

Anastasia Troshina, lawyer, head of the social assistance “Help for Families with AGR” movement, explained to RT that the investigators were interested in all the details of the Novozhilov’s collection: “They asked why the collection for a drug that was not registered in Russia was called“ Zolgensma ”, from where such fabulous sums for medicines ($ 2 , 5 million), why the collection is conducted on social networks and whether the family has experienced negligence on the part of the health authorities. ”

She also confirmed the version of Novozhilov that the activity of the UK was caused by the death of Zakhar Rukosuev. According to Troshina, “Spinraz” was not allocated in a timely manner to another resident of the Sverdlovsk region, Lisa Kraukhina (a year and five months). Earlier, Lisa was observed in the district rural hospital, where they did not even recommend additional tests and examinations, when the child already at the 3rd week showed oppression of reflexes, including motor ones, the representative of the foundation emphasized.

“Lisa’s disease was diagnosed only now, so there are questions about the qualifications of doctors in the local hospital where the girl was first observed. While the baby is not on mechanical ventilation, but her parents are afraid that she, like Zakhar from Krasnoyarsk, will be in intensive care due to the progression of the disease and she will not be, ”Troshina added.

The Investigative Committee of the Russian Federation told RT that they understand the Novozhilov case. Peter intends to continue raising funds for the drug until a decision is made to provide his child with Spinrazoy at the expense of the budget.