In Yekaterinburg, on the day of Putin’s arrival, the father of a child with SMA was detained

In Yekaterinburg, on Thursday, the police detained Dmitry Bakhtin, who went out on a single picket demanding to provide medicine to his three-year-old son Misha, who is suffering from spinal muscular atrophy. This is reported by It’s My City.

Russian President Vladimir Putin visited the city on Thursday. Bakhtin stood in front of the plenipotentiary office of the president with a poster “President Putin, save the child’s life. Provide medicine.” The police detained Bakhtin, and then took him to police station No. 5. It is not yet known whether he will be accused of something.

Bakhtin has been on picket lines for several months to get medicine for his son. In Moscow, he was detained on Red Square and at the Government House, but was not brought to justice.

Spinal muscular atrophy (SMA) is a rare genetic disease. As “Now” notes, there are several types of therapy for SMA patients. This is either life-long reception of the drugs “Rysdiplam” or “Spinraza”, or intravenous administration of the gene therapy drug “Zolgensma”. “Zolgensmy” injection is given once. The price of one ampoule is 160 million rubles (about $2 million).

The Bakhtins were able to raise money. In February 2021, when Misha was six months old, he was injected with Zolgensmy. But the boy fell into that few percent of children for whom the treatment turned out to be ineffective. Several federal and regional doctors recommended them to continue therapy with “Spinraz” or “Rysdiplam” for life, however, they officially refused to write such a recommendation. The annual course of these drugs, as reported, costs 14 million rubles. Misha Bakhtin’s parents believe that the state structures refuse to approve their son’s treatment, as it is too expensive. For more than a year, they have been trying to get medicine for the child, including pickets.