“In order to ensure the life testimonies of children with SMA who have an opinion from the medical commission, a decision was made to make purchases at the expense of the regional budget until decisions were made to clarify the procedure and sources of financial support by federal executive bodies. Currently, documents are being prepared for competitive procedures for the purchase of the drug, ”the report says on the agency’s website.
Svetlana Rukosueva, the mother of five-year-old Dobryni, said that on February 26 the child should be given the first dose of this drug.
Earlier it was reported that investigators opened two criminal cases on the death of two-year-old Zakhar Rukosuev from the village of Boguchany, Krasnoyarsk Territory. The boy suffered from spinal-muscular atrophy and needed an expensive drug, which was prescribed to him by the decision of the medical commission.
However, regional officials for several months refused to buy medicine, citing a lack of funding.