Governor Kuyvashev instructed the regional Ministry of Health to provide the drug “Evrisdi” to Mikhail Bakhtin, who suffers from spinal muscular atrophy. The boy will receive experimental tandem therapy in addition to gene therapy with Zolgensma.
Kuyvashev’s decision was reported by local media, and the information was also confirmed by the region’s information policy department. According to the department’s statement, Bakhtin’s treatment with “Evrisdi” will set a precedent since there have been no previous cases of such tandem therapy in the Russian Federation. The Ministry of Health of the Sverdlovsk Region is organizing a consultation at the Regional Children’s Clinical Hospital to address the concerns and uncertainties surrounding the safety and effectiveness of this method. The purchase of the drug is planned at the expense of the regional budget.
Mikhail Bakhtin’s family has been tirelessly seeking further treatment options following the unsuccessful Zolgensma injection, despite raising 160 million rubles in 2020-2021. Later on, the parents of the boy attempted to get Spinraza (nusinersen) treatment, but were denied because there were no clinical trials evaluating the interaction of these two drugs.
Since 2021, the Circle of Kindness has been sponsoring the treatment of children afflicted with orphan diseases, including SMA. This foundation shares the same viewpoint. As described in the foundation, the utilization of tandem therapy – incorporating the medication “Evrysdi” or the administration of the drug “Spinraza” after the infusion of “Zolgensma” – remains experimental in nature, which falls outside the purview of the foundation’s financial capabilities. “The public budget should only be used for proven treatments, and experimental methods around the world are financed by pharmaceutical manufacturers. The foundation should not support experiments on children at the expense of Russian taxpayers,” the foundation’s press service said in a statement.
