29 August 2019 - Russia has become the first of the 15 former Soviet republics to approve Biogen’s Spinraza (nusinersen) to treat spinal muscular atrophy.
In its decision, the Russian Health Ministry noted that much more data exists on Spinraza’s benefits for patients 17 years and younger than for those 18 and older. But it did not restrict the use of Spinraza based on age or disease severity, according to Olga Germanenko, president of the SMA Family Foundation Russia, which pushed for approval.
The next step in bringing Spinraza to the estimated 2,000 to 3,000 Russians with SMA will be to persuade government officials and lawmakers that Russia’s national health insurance system should cover it, Germanenko told SMA News Today in a phone interview. The foundation also plans a campaign to try to rev up doctors’ enthusiasm for Spinraza, she said.