As of today, 200 children live in Ukraine with a rare and severe genetic disease — spinal muscular atrophy. The congenital disease develops gradually and, in a few years, confines the child to a wheelchair, bed and then kills. The treatment of the disease requires extremely expensive drugs, of which there are only 3 types: Zolgensma, Evrysdi and Spinraza. Spinraza's price is more than $100.000, is administered to a child up to 2 years old 1 time, and cures the disease forever.
Last week, for the first time it's in history, Ukraine purchased 150 vials of Spinraza and distributed them among 30 hospitals.
"Today, without exaggeration, is an important day in the history of Ukrainian medicine. We not only received expensive medicines that had never been available in Ukraine before. We received the most valuable thing — the opportunity to save the lives of children suffering from rare orphan diseases. We thank the donors who gave our children this chance at life," deputy minister of health Maria Karchevych said.
The drugs Zolgensma and Evrysdi cost more than $2 million and must be used throughout life. However, they are not registered in Ukraine, so the state can neither buy nor use them.