Volynets said that she faced the problem of lack of access to the drug, and this could lead to tragic consequences, since if left untreated, the child could die.
“Children who need this drug have limited time.
The injection must be given before the child reaches two years of age.
It has already been proven that the use of this drug completely stops the disease, ”she explained.
The Children's Ombudsman also stressed that the next goal is to create a Russian analogue, which should be effective, but cost less.
Earlier it became known that the drug "Zolgensma" used to treat spinal muscular atrophy officially appeared in Russia.
At the end of last year, it became known that more than 1,000 children with spinal muscular atrophy (SMA) were already receiving help at the expense of the Circle of Good Foundation, and the most expensive drug in the world, Zolgensma, was purchased for 22 of them.