The Ministry of Health of the Orenburg Region told about the treatment of children with spinal muscular atrophy (SMA). The department noted that the region has successfully begun treatment of patients with SMA.
The drug "Spinraza", which helps to cope with this rare disease, is purchased in the Orenburg region at the expense of the regional budget. The situation is controlled by Governor Denis Pasler and Minister of Health Tatiana Savinova.
In 2020, doctors managed to make four injections to patient Vita Bezukladov. Already in 2021, on January 28, two more girls, Sophia and Maria, received the drug, on January 29, eight-year-old Matvey.
The drug is administered by the chief freelance neurosurgeon of the region Alexey Posnov. The whole team of the regional children's clinical hospital is involved in the process. Spinraza is administered by specialists under CT control. This is the main difference between the approach of doctors from Orenburg and colleagues in other regions. CT control allows 100% to make the procedure as safe as possible. Almost all children are diagnosed with grade 3-4 scoliosis, and the accuracy of drug administration plays a major role.
However, the procedure can be performed without anesthesia, which can have a bad effect on children with SMA. The drug is administered on the basis of a children's regional hospital. The purchase of a medicine is controlled by several structures. The cost of one ampoule varies from 6 to 8 million rubles. All children who have already received the drug are doing well, added the Ministry of Health.