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Russian Prime Minister Mikhail Mishustin said that the drug risdiplam (trade name Evrisdi) for the treatment of spinal muscular atrophy (SMA) in adults and children from two months of age is included in the list of vital and essential drugs. Now it will be provided to patients free of charge, informs RIA Novosti.
As the manufacturer notes, risdiplam is the first and only drug for the pathogenetic therapy of SMA that can be taken at home. It is administered in liquid form once a day by mouth or, if necessary, through a tube for enteral feeding. The price of risdiplam is $ 340 thousand per year. Life-long treatment.
A year ago risdiplam became the second drug registered in Russia for the treatment of SMA. The first, spinraza, was approved in August 2019.
The most expensive drug in the world, Zolgensma, for the treatment of SMA, was registered in Russia this month. The cost of one injection is about 160 million rubles ($ 2 million).
If a medicine is on the list of essential, patients have the right to receive it from the budget of the region in which they live. However, due to the high prices for drugs, Russians often have to seek the necessary drugs through the courts. Officials are putting pressure on doctors not to prescribe expensive drugs. Even if the parents of sick children manage to prove the right to their treatment through the court, time may be lost. So, in the Nizhny Novgorod region, a criminal case was opened after the death of a 10-year-old girl with cystic fibrosis, who did not receive any medication. Having lost the trial, the officials told the child’s mother that the budget for the current year has been exhausted, and they will be able to purchase the medicine only in February 2022.
Spinal muscular atrophy is a severe hereditary neuromuscular disease. It manifests itself in early childhood, before the age of two and progresses rapidly: over time, patients lose the ability to sit, stand, move, swallow and breathe. SMA occurs in one in 6-10 thousand newborns. In May, there were 890 children with SMA in Russia, said Deputy Prime Minister Tatyana Golikova.
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