"We do not want to go this way"

After a long confrontation, the Ministry of Health of the Sverdlovsk region heard the parents of Misha Bakhtin, who is ill with spinal-muscular atrophy (SMA), and issued a vital drug

Three-year-old Misha Bakhtin from Yekaterinburg, who was diagnosed with SMA at a month and a half, finally received an expensive drug “Figlash” from the Ministry of Health of the Sverdlovsk region. For a long time, doctors refused Bakhtin to provide medicine. The boy’s parents sued the Ministry of Health and constantly went out to single pickets in the hope of reaching the authorities. And they, fortunately, succeeded.

“The Ministry of Health of the Sverdlovsk Region, having studied all the medical documentation for a child, which we provided with a stable positive dynamics and the absence of unwanted phenomena, made a positive decision, and the doctors collegially prescribed Misha's vital treatment,” Yana Bakhtina, the boy’s mother, told Novaya Gazeta.

According to Misha’s parents, they were invited to the hospital for the decision. Prior to this, the boy underwent another examination, as a result of which a collegial decision was made by the doctors of Moscow and Yekaterinburg to continue taking this drug “Figlash”.

“We had no illusions, we were refused so many times that we were absolutely ready for everything,” said Dmitry Bakhtin, Pope Misha. -And when the doctors told us that you were appointed “risads”, we without any anger [for everything that happened earlier] thanked them with all our hearts for the decision made.

Bakhtins have already begun taking the drug allocated by the state. Every 17 days they receive one bottle worth 700 thousand rubles. Previously, they bought it for their own money and the money of philanthropists.

“Misha has a support on his feet, he takes his first steps with support,” says Dmitry. - With his mother, he stomps up the stairs, lifts his legs, even sometimes helps himself with his hands.

He knows Russian and English alphabet. A year ago, he did not speak and did not try to walk. This is a huge progress for a child, the motor activity of which was originally 3 points on the scale of the neurological test Chop Intend, today it has 55 points out of 64 possible.

Recall that for Misha Bakhtin, people from all over Russia collected money for the Zulgensma injection worth 2 million 300 thousand dollars. At the beginning of 2021, the boy was injured, but it turned out that Misha enters the rare percentage of people who have to continue treatment and after this miracle. The drug was prescribed to the baby Pathogenetic therapy of Spinraz, but the regional Ministry of Health refused to provide the boy with an expensive drug.

“While we were suing Spinraz, the courts all lasted and lasted, but we could not risk the child’s life,” says Dmitry Bakhtin. - It is impossible to put this drug yourself, only by the hands of doctors. Therefore, we began to give “risdings”, which showed a good result. And the doctors finally recognized this.

To achieve treatment for their child, the Bakhtins wrote to the Investigative Committee, to the Ministry of Health, turned to the president of the country, went into pickets.

Misha promised to “rice and”, but did not give out. A year later, the Bakhtins finally received vital treatment for their son.

“I would really like my parents with sick children to go the path that we went,” says Dmitry Bakhtin. - I want everything to be much easier at the state level. I want this precedent to make doctors and officials associated with the Ministry of Health think, including also doctors. Here is a child, he lives, his condition improves ... Then why - no? If treatment has a positive effect on the child, then everyone needs to receive it. I really hope that after our case, doctors will often make positive conclusions so that help does not have to wait too long. I do not want anyone to experience what we experienced.

Yekaterinburg