In Russia, two children died after using the most expensive drug in the world, Zolgensma, it is necessary to find out if their death was related to the treatment. This was reported “RIA News” head of the SMA Families Charitable Foundation Olga Germanenko on August 12.
Earlier in the day, the death of minors was reported by the agency Reuters with reference to the report of the manufacturer Zolgensma – the Swiss company Novartis International AG (Novartis). Two patients were said to have died in the Russian Federation and Kazakhstan, the cause of death was acute liver failure after 5-6 weeks from the start of the drug infusion and 1-10 days after the start of a gradual reduction in the dose of corticosteroids.
“I have no information on Kazakhstan. In Russia, this is already the second child who died after using Zolgensma, it’s hard for me to say how much this is related to the use of the drug, this must be carefully checked and established, ”said Germanenko.
Zolgensma is essential for the treatment of spinal muscular atrophy (SMA), a rare genetic disease that affects the motor neurons of the spinal cord. The cost of one injection exceeds $2 million, and one injection is enough for treatment.
The drug was registered in Russia on December 9, 2021. He entered the state register of medicines.
On July 7, 2022, the Center for the Development of Advanced Technologies announced that Zolgensma has officially appeared in Russia.
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