In connection with the death of two children who were administered the drug, the Patients’ Union urged not to discontinue the procurement of Zolgensma


According to Denis Belyakov, the head of the Patients’ Union and Patient Organizations for Rare Diseases, the death of two children (in Russia and Kazakhstan) after the administration of Zolgensma must not affect the procurement of the drug. It is possible that the reason was the general condition of the children, and not Zolgensma.

“I think that the cause of the two deaths was not only the drug. A lot here depends on the status of the child, their concomitant pathologies. The drug is very strong, and specific therapy is provided before it. Moreover, the children with the diagnosis are unhealthy in general, as different organs are involved in the disease. There may have been bacterial or viral infections, which cannot be totally excluded. And it’s too early to raise an uproar over that before receiving detailed information about the reasons,” Belyakov said to the Public News Service.

He said that other children must not be deprived of their opportunity to receive treatment because of those two incidents.

“In total, more than 150 Russian children have been treated with Zolgensma. And everything was fine, except for two incidents. The two deaths do not provide any grounds to say that Zolgensma is dangerous to health. Yes, there is a list of side effects in the instructions, and parents sign their informed concents in that respect. And at this stage, we have no expert knowledge on the case,” Denis Belyakov emphasized.

As it became known earlier, Novartis will make amendments to the instructions of Zolgensma after the death of two children.