In Yekaterinburg, the father of a boy with SMA held a picket near the prosecutor’s office
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In Yekaterinburg, near the building of the prosecutor’s office of the Sverdlovsk region, a picket was held by Dmitry Bakhtin, whose son suffers from spinal muscular atrophy (SMA). The man demanded that three-year-old Misha Bakhtin be given the Swiss drug risdiplam. Portal E1.ru reports that after the picket, the family went to the prosecutor’s office for an appointment.
In February 2021, the boy was given Zolgensma, the cost of which is about 160 million rubles. Then the parents applied to the Regional Children’s Clinical Hospital (ODCH) with a request to continue the treatment of the boy with Spinraza. According to the neurologist’s conclusion, as of May 2021, Misha did not experience sufficient positive dynamics after the administration of Zolgensma.
However, the Sverdlovsk Ministry of Health and the hospital referred to the inappropriateness of treatment with Spinraza after an injection with Zolgensma. Then the parents went to court, which ordered the doctors to “immediately begin treatment.” According to Ms. Lipinskaya, the court decision entered into force and has yet to be implemented.
Subsequently, a criminal case was initiated against the CSTO under Part 1 of Art. 293 of the Criminal Code of the Russian Federation (“Negligence”), which is under the control of the head of the TFR, Alexander Bastrykin. In July 2023, doctors promised to give Misha Bakhtin the drug risdiplam for free, which must be taken for life. However, the medicine is still did not provide.
“What should a child do when therapy has already been prescribed, when therapy has already been taken by a child for more than a year? What should a child do when there is no evidence of drug withdrawal? It is very important. If they want to write a cancellation, let them write. But not a single doctor dares,” said Dmitry Bakhtin during the picket.
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