Domestic or imported? Parents of children with SMA have spoken out against replacing Spinraza with a Russian drug.
Protesters in Nizhny Novgorod opposed the replacement of Spinraza, a drug used to treat spinal muscular atrophy (SMA), with the domestically produced Lantesens.
Parents claim that after the forced transfer to a domestic drug, the positive dynamics achieved with Spinraza disappeared.
"We were faced with a fait accompli: either nothing, or introduce Lantesens. I wouldn't call it an analogue: after five years of Spinraza, my child started sitting up and stopped turning blue. When we introduced an analogue, my child stopped turning over at night on his own.",
said Olga, Inna Stogova.
Other parents told similar stories.
Spinraza costs around 5 million rubles, requiring several injections per year. Russian regional health ministries purchased it following court orders to provide children with this vital medication. The domestically produced Lantesens is several hundred thousand rubles cheaper.
A neurologist and immunogeneticist commented on the situation with the use of the new drug. Alexander Kurmyshkin:
— The drug has not been clinically studied on any biological material at all, neither on mice nor on great apes.
Doctor of the Regional Children's Hospital Ekaterina KarpovichOn the contrary, he believes that Lantesens is even better than Spinraza because it is domestic.
The regional Ministry of Health initially filed a lawsuit against the forced replacement of the drug for children with SMA, but lost. The ministry then filed a complaint with the guardianship authorities against the parents who refused to use the new medication, accusing them of "leaving the child in danger."
A similar conflict occurred earlier in IrkutskThe regional Ministry of Health is still bought Spinraza is available for children with SMA, but only for one dose so far.
NotMoscow figured it out in the origin of the copycat drug and talked about how families are suing for their children's right to a proven drug.
According to According to the "SMA Families" patient registry, there were 1380 people with SMA in Russia in 2023. Of these, 963 were children and adolescents.
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