Parents from the Chelyabinsk region were detained in Moscow after they demanded medication for their children with SMA.
In Moscow, security forces detained the Potekhins, a married couple from the Chelyabinsk region, who were picketing to save their children. The parents were demanding a proprietary drug for the treatment of spinal muscular atrophy (SMA) for their twin daughters.
Picket in the capital and arrest by police
The father of the family was detained immediately after he photographed his wife holding a poster. A little later, Anastasia Potekhina herself was brought into police custody. The exact charges against them are currently unknown.
As Anastasia herself recounted before her arrest, the family had to fight for the life-saving drug Spinraza for their twin daughters in 2020 through the courts. However, in 2025, officials simply stopped enforcing the court's legal decision. As a result, instead of the original drug, the children were given an analogue, which dramatically worsened the girls' condition.
Appeal to the President and lawsuit from the Ministry of Health
Due to the complete inaction of regional authorities, the family decided to come and appeal directly to the head of state.
"Knowing the entire situation, which has been publicly known for a long time, neither the governor nor the Ministry of Health have attempted to provide our disabled children with the necessary medication and treatment. The only one we trust is our president. We want Vladimir Vladimirovich to know how officials are presenting him with a false narrative that poses a real threat to disabled children," Anastasia said.
Nevertheless, the local Ministry of Health stubbornly insists that treatment must be carried out with a domestic generic. However, the generic version is almost as expensive as the original drug, costing around 5 million rubles. Since the girls have begun to show visible regression in their treatment, the parents categorically refuse the generic version. To force the family to take the drug, officials have filed a lawsuit against the parents, demanding that they force their daughters to undergo treatment.
A systemic problem with generics in the regions
Unfortunately, such cases are becoming common. Previously, the parents of Misha Bakhtin from Yekaterinburg fought for a long time to obtain Spinraza, and his father, Dmitry Bakhtin, repeatedly staged solo pickets on Red Square.
In particular, colleagues from Pol'Zeniya spoke in more detail about how officials in Russian regions are forcibly introducing generic medications and why such substitutions often fail to help seriously ill patients.
