The Ministry of Health for the first time received Spinraza - a rare medicine for children suffering from SMA
Thirteen hospitals received more than 150 vials of Spinraza medicine. It is one of the three drugs available in the world that are used in the treatment of children with spinal muscular atrophy. Also, this drug is called the "most expensive injection" in the world, because one vial of it costs more than USD 100,000.
According to Deputy Health Minister Maria Karchevych, this is the first time that Ukrainian hospitals receive these medicines free of charge for children with such a rare disease.
"Today, without exaggeration, is an important day in the history of Ukrainian medicine. We didn't just get expensive medicines that have never been available in Ukraine before. We got 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," the deputy minister commented.
In Ukraine, more than 200 children have a confirmed diagnosis of SMA. One of the rare genetic diseases is characterized by increasing muscle weakness throughout the body. With age, it leads to a violation of the musculoskeletal system and eventually chains 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 thousand newborns.
However, there are three drugs used to treat SMA in the world: Zolgensma, Evrysdi, and Spinraza. The first one is administered before the age of 2 years and stops the disease forever, the last two should be used throughout life.
For reference: Spinraza is a drug registered by the Biogen company (USA), which is administered by injection directly into the cerebrospinal fluid through the lower back. Maintenance injections are necessary throughout life.