Charity from Novartis
The pharmaceutical company will distribute for free the world's most expensive drug for the treatment of spinal muscular atrophy for $ 210 million
Patients suffering from spinal muscular atrophy can get Zolgensma medicine for free – the second drug that has appeared in the world for the treatment of all types of the disease. This was stated by the manufacturer of the drug – Novartis.
Novartis Pharmaceutical Company has launched a program of free access to the drug Zolgensma (onasemnogene abeparvovec) for patients with spinal muscular atrophy (SMA). This is the world's most expensive drug for the treatment of SMA: a single infusion will cost $ 2.1 million.
Next year Novartis is going to distribute 100 applied doses. It is assumed that Russian patients will also be able to count on the medicine – our country is included in the program.
As he writes Reuters, the free access to medicine program is aimed at countries where Zolgensma has not yet been registered, and the distribution of drugs is not prohibited by law.
Recall that only one drug for the treatment of SMA – Spinraza – was registered in Russia in August of this year. Previously, in order to receive it, families had to leave the country for the treatment of loved ones.
Reference:
Spinal muscular atrophy is an incurable genetic disease.
It leads to atrophy of all the muscles of the body, as a result, a person cannot swallow, and then breathe. According to statistics, 50% of children with this disease do not live up to two years.
According to the SMA Families Foundation, about 300 children suffering from spinal muscular atrophy are born in Russia every year.
As of 2018, 30 such children live in St. Petersburg. There are more than 500 registered patients with SMA in the Russian registry, none of whom are receiving treatment in Russia.
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