According to the the Telegram post of the Public Chamber, the Expert Council of the Circle of Good Foundation included in its procurement list drugs for 80 children with Duchenne muscular dystrophy, depending on specific mutations.
The list includes Exondys, Vyondys, and Viltepso.
“The disease destroys muscles: the child first stops walking, and eventually stops breathing. Pathogenetic therapy helps patients maintain their ability to move independently for a long time, and promotes preservation of motor and respiratory functions. Interruptions in therapy lead to a regression of motor activity. About 50 children will be provided with medicines,” the report says.
Lumasiran will be purchased for 30 children with primary hyperoxaluria type 1. The disease leads to excessive production of oxalate and pathological deposition of calcium oxalate in many organs. Primary hyperoxaluria type 1 is the most severe and most common (1-3 cases per million) form of this genetic disease, which causes the formation of kidney stones, and in the absence of the necessary therapy can lead to kidney failure and the need for dialysis.
On July 6, the Expert Council of the Circle of Kindness approved the decision on the procurement of medicines for children for the first quarter of 2022 to ensure the continuity of treatment in 2021 and 2022.