Deputy Prime Minister Tatiana Golikova proposed to Russian President Vladimir Putin to consider options for funding the procurement of medication for the treatment of spinal muscular atrophy Spinrate (noninert), reports RIA Novosti.
The issue of providing patients with SMA the drug was raised the meeting of Russian President with employees of social institutions and NGOs. Due to the high cost Spinnaz many regions cannot secure them sick.
The average cost of a course Spinnaz in 2019 amounted to RUB 47.5 million in the first year, and 23.7 million rubles in the second year.
During the meeting, Tatyana Golikova has informed that to solve this problem, you can use three sources of financing: funds of the region, Federal funds and assistance to socially-oriented business, for example, by creating a Fund for the support of children in need of expensive medications.
Golikova expressed to address this issue, if the President gives the order. “Agreed Tatiana, let’s do it”, – said the President.
In Russia there is no unified registry of patients with spinal muscular atrophy. According to various estimates, these patients can be from 800 up to 3-5 thousand.