The Legislative Assembly of St. Petersburg has officially presented a proposition to the State Duma of the Russian Federation. The proposal recommends the incorporation of spinal muscular atrophy (SMA) into the high-cost nosologies program, with the provision of preferred medication coverage for adult SMA patients.
Currently, the provision of medication for patients under the age of 18 with SMA is facilitated by the Circle of Kindness Foundation. Currently, patients aged above 18 have no chance to receive special drug coverage unless they confidently assert their rights through the legal system. And the total cost of drug therapy for patients over the age of 18 can approximately be: in 2023 – 10,179,753,838 rubles, in 2024 – 9,891,188,574 rubles, in 2025 – 10,564,058,545 rubles.