The Russian government has included the drug "Spinraza" (Nusinersen), necessary for the treatment of children with spinal muscular atrophy (SMA), in the list of essential drugs. This is evidenced by the order of Prime Minister Mikhail Mishustin, published on the government website.
"After the entry for M05BX, add the following entry: [include in the list] M09AX other drugs for the treatment of diseases of the musculoskeletal system Nusinersen," reads the text of the document.
Spinraza is the only drug registered in Russia for the treatment of SMA. The cost of one injection of the drug is about 8 million rubles. Children with SMA are prescribed a course in which six injections need to be given in the first year of treatment, then three injections each year.
Due to the high cost of the drug, not everyone can get treatment, while the disease is fatal. Olga Germanenko, head of the SMA Family Foundation for helping people with spinal muscular atrophy, said in an interview with Lente.ru that the inclusion of the drug in the VED list (vital and essential drugs) would reduce the cost of injections by 25-30 percent.
Spinal muscular atrophy is the absence of a gene that controls motor neurons. Because of it, the muscles of the body gradually atrophy, while the patient's brain remains intact.