The most expensive drug in the world, the drug “Zolgensma” for the treatment of SMA, has been registered in Russia. The procedure took almost a year and a half

The Swiss pharmaceutical company Novartis has received permission to use the drug Zolgensma in Russia, which is used to treat spinal muscular atrophy (SMA). Relevant data are published on website the state register of medicines of the Ministry of Health.

Spinal muscular atrophy (SMA) is a rare genetic disorder in which the motor neurons of the spinal cord are affected. This leads to muscle atrophy and paralysis.

Olga Germanenko, Head of the Family SMA Foundation told Novaya Gazeta, which usually takes about two to six months from the moment of registration of the drug to the receipt of the drug in civil circulation.

There are three drugs for SMA in the world: Spinraza, Risdiplam and Zolgensma. Previously, only Spinraza and Risdiplam were registered in Russia. These drugs must be taken for life. The Zolgensma injection is given only once, at the age of up to two years. The drug “Zolgensma” is included in the Guinness Book of Records as the most expensive drug in the world. According to the latest data, the purchase price of the drug is 121 million rubles.

The registration procedure for Zolgensma in Russia took almost a year and a half, Novaya Gazeta reminds. Novartis applied for the registration of Zolgensma in Russia in mid-July 2020.

The Ministry of Health has prepared a decree proposing to allow the Circle of Kindness fund “, created on the initiative of President Vladimir Putin,” to purchase drugs registered in the Russian Federation before they are put into civil circulation, but no later than 6 months from the date of their registration.