‘ZOLGENSMA’ medicine for SMA has been registered in Russia

The registration process for ‘Zolgensma’ drug, which is used to treat patients with spinal muscular atrophy (SMA), has completed in Russia. The drug costs over 150 million rubles, which makes the drug the most expensive in the world.

Olga Germanenko, the head of the ‘Family of SMA’ fund, emphasized that first, the new medicine would have to go through a series of procedures aimed at the legal sale in the country.

It is necessary to develop Russian packaging, instructions, and, as a rule, during such a transition period, it is no longer possible to import the same drug, but in international packaging, Novaya Gazeta reports.

At the moment, a government decree, allowing the fund to purchase drugs registered in the country even before they enter civilian circulation, has already been prepared. The document establishes the term that the drug must comply with the requirements specified during their registration, with the exception of the rules on labeling and packaging.

SMA is a genetic disorder that affects the motor activity of the legs, as well as the neck and head.

Children born with SMA, as a rule, often die under the age of two.

Patients with such a diagnosis need only one injection throughout their lives, but due to the cost of the medicine, many foundations refuse to help, preferring to support dozens and even hundreds of other families with this money.