In Moscow, a court denied an SMA patient a free drug for treatment 
atrophy (SMA) to the 33-year-old associate professor of the Department of Theater and Cinema History, specialist in the history of musical theater, teacher of the Faculty of History and Philology of the Russian State University for the Humanities Petr Vorotyntsev. This is reported by the Takie Dela portal.
Spinraza is a medicine that helps with SMA. The drug for a deadly disease should be issued free of charge, however, to obtain it, you need to go through a number of procedures.
At the end of 2020, Vorotyntsev began collecting documents to provide the drug. He went to the polyclinic, from where he was sent for hospitalization. After that, on the advice of the SMA Families Foundation, which is involved in helping patients with this disease, he went to the Scientific Center of Neurology and after all the examinations received the conclusion of the commission.
The commission prescribed him the drug Spinraza, but the man was summoned for re-hospitalization at the Orphan Disease Center. Vorotyntsev refused, as, according to him, in this institution, patients are given negative medical reports.
“The reason [for the court's refusal to provide the drug] is that I did not go to the orphan center, where all patients they write refusals equally. We will appeal, “- said Peter.
SMA is a genetic neuromuscular disease that affects the motor neurons of the spinal cord. This leads to an ever-increasing muscle weakness that begins in the muscles of the legs and the entire body. After the disease reaches the muscles responsible for swallowing and breathing.
Earlier in the Samara region, a local resident Nikolai Tsyganov said that the Ministry of Health tried to deprive him of his disability instead of providing free drugs for a rare genetic disease – Pompe disease.