Russia’s Health Ministry has issued a registration certificate for the Zolgensma medication for spinal muscular atrophy (SMA), according to data published on the ministry’s online state register of medications on Thursday.
“The date of registration: December 9, 2021. The registration will expire on December 9, 2026,” the register says.
Spinal muscular atrophy is a term used for a group of genetic disorders that result in damage to or the loss of motor neurons, leading to muscle wasting and a gradual loss of motor and respiratory functions. SMA is identified in one in 7,000 newborns and is one of the most common causes of genetically determined infant mortality.
The Zolgensma and Spinraza medications are used to treat the disease. Zolgensma is listed in the Guinness Book of World Records as the world’s most expensive medication that costs about 160 mln rubles ($2.1 mln) for a one-time treatment. The Krug Dobra (or Circle of Kindness) foundation purchases Zolgensma for kids in Russia.
