The State Duma rejected for the second reading amendment to the bill on drug provision of patients with orphan (rare) diseases, which expanded their list (“other diseases determined by the government”).
Thus, the current scheme, in which an amendment to the law is needed to expand the free purchase of drugs for each rare disease, will remain in effect. Otherwise, a government decision would be enough, which would greatly simplify the procedure for expanding the list, including for people with SMA.
SOTA (@sotaproject)