In Murom, one of the most expensive drugs in the world – Nucinersen (trade name “Spinraza”), one package of which costs 8.6 million rubles, was injected into a disabled person of the first group. This is the only drug registered in the Russian Federation that is effective for the treatment of spinal muscular atrophy (SMA).
The Murom City Prosecutor’s Office conducted an investigation into the patient’s failure to receive the drug. Employees of the supervisory agency found that the drug was prescribed to the patient, but the medical organization was in no hurry to purchase it.
“With the fact of the failure to provide the patient with the specified drug, the city prosecutor appealed to the court with a statement of claim. In it, he demanded that the medical institution and the Department of Health of the Vladimir region to provide a local resident with the necessary medicine, “- reported in the press service of the department.
The regional prosecutor’s office ascertained that the disabled woman had already received the drug.
SMA is a hereditary disease that affects cells of the spinal cord. Movement disorders progress, muscles in the arms, legs and neck fail. In 80% of cases, the disease is diagnosed in childhood. SMA does not affect mental abilities. While waiting for medication, sick children watch the progression of the disease in full consciousness. 50% of children with SMA do not live to the age of two. Existing expensive medications can stop the course of the disease completely.
In addition to Spinraza, the drug Zolgensma, which is not yet registered in Russia, is also used to treat SMA. It is the most expensive drug in the world. One dose of this drug, divided into several doses, costs about 150 million rubles. The drug “edits” the genome in such a way that a single course is enough to stop the progression of the disease. The drug does not restore the lost functions.
Both drugs were invented recently. “Spinraza” entered the market in 2016, and “Zolgensma” in 2019. Before that, the disease was considered incurable.
In 2020, Russia introduced a special “tax for the rich” – citizens with incomes over 5 million rubles a year will pay not 13, but 15% of personal income tax. The money will be used to treat orphan diseases, which include SMA.