Doctors planned to replace the girl with SMA who died in Chuvashia with nusinersen, which had no effect.


The authorities of Chuvashia and the Ministry of Health rejected accusations of the death of a 6-year-old girl with SMA due to lack of treatment with an expensive medicine. She was treated with nusinersen, but the drug did not help and they planned to change it. The Investigative Committee opened a case into the death of the child.

Therapy with nusinersen (Spinraza) for a girl with spinal muscular atrophy who died on February 11 in Chuvashia was stopped due to lack of effect. Doctors planned to treat her with another drug, TASS reported.

By decision of the medical commission, the child was administered nusinersen four times in the anesthesiology and intensive care unit of the Republican Children’s Clinical Hospital, but the medicine did not give the expected effect. A medical commission was assembled, which noted negative dynamics in the child’s neurological status, the progression of an incurable genetic disease, and decided that further therapy with nusinersen was inappropriate.

The child was scheduled for treatment with risdiplam, which was to be supplied to the republic through the Circle of Good charity foundation.

On February 15, the Investigative Committee of Chuvashia began investigating the death of this child “due to refusal of nusinersen therapy,” as the Investigative Committee said in a statement. A criminal case was initiated under Part 2 of Article 293 of the Criminal Code of the Russian Federation (negligence). This case has been combined with another – regarding the refusal to continue nusinersen therapy for four more young patients with the same diagnosis.

In Chuvashia, 17 children are registered with a diagnosis of SMA; in 2020, nusinersen therapy was started for ten minors. Over the past year, the republic’s budget allocated 240 million rubles for these purposes. This year, procurement continues.



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