Risdiplam for spinal muscular atrophy included in list of essential drugs

The Russian government has expanded the list of vital and essential drugs that the state guarantees citizens will receive.

The government website reports that the list will include another 22 drugs, including risdiplam (trade name "Evrisdi"), which slows the development of a severe genetic disease - spinal muscular atrophy . From January 1, 2022, when the corresponding government order comes into force, the drug will be required to be issued in the regions under preferential drug provision .

Russian Prime Minister Mikhail Mishustin called the inclusion of risdiplam in the list "one of the significant decisions." "Inclusion in the list of essential drugs will allow the drug to be purchased at the expense of the federal and regional budgets and provided to people free of charge," the head of government said.

Risdiplam is a medicine that must be taken throughout life. One bottle of the drug in Russia retails for about 800 thousand rubles; a person needs about 31 bottles per year, which costs almost 25 million rubles.

The list of vital and essential drugs will also include ivacaftor in combination with lumacaftor for the treatment of cystic fibrosis from 2022.

• According to Meduza's sources , the supplier of the presidential foundation "Circle of Goodness" — pharmaceutical distributor "Irvin" — is in talks with the international company Roche about producing risdiplam in Russia. A representative of Roche said that the company is considering the possibility of localizing "Evrisdi", but did not disclose details. Currently, the foundation "Circle of Goodness" purchases risdiplam for children from 6 months to 18 years old.
• Another drug for spinal muscular atrophy, Spinraza, is already on the list of essential drugs, but it is often difficult to obtain even for children, and even more difficult for adults.
• According to the SMA Families charity foundation, 200 children with spinal muscular atrophy are born in Russia every year. The foundation estimates that there are between three and five thousand people with this disease living in Russia.