For the first time, Ukraine received the drug Spinraza, a rare drug for children suffering from SMA

Anhelina Sheremet

For the first time, the Ministry of Health of Ukraine received the drug Spinraza, which is used in the treatment of children with spinal muscular atrophy.

This was announced by the Ministry of Health on Monday, July 4.

The drug Spinraza is called the most expensive injection in the world, as one vial costs more than $100,000. Thirteen hospitals have already received more than 150 vials of medicine, donated by donors.

In Ukraine, more than 200 children have a confirmed diagnosis of SMA — it is one of the rare genetic diseases characterized by progressive muscle weakness throughout the body. With age, it leads to a violation of the musculoskeletal system and eventually confines the patient to a wheelchair and bed. SMA is the most common genetic cause of death in children. According to statistics, this disease affects one or two babies out of 10,000 newborns.

There are three drugs in the world that are used to treat SMA: Zolgensma, Evrysdi and Spinraza. The first is introduced before the age of 2 and stops the disease forever, the last two must be used throughout life.