In March 2020, parents of children with cystic fibrosis participated in pickets near the building of the Ministry of Health of Russia.
The Investigative Committee of Russia has opened a criminal case of negligence after a girl with cystic fibrosis died in Nizhny Novgorod. She did not receive her medication from the local Ministry of Health in time.
The filing of a case under Article 293 of the Criminal Code of the Russian Federation (negligence) became known from the press release of the Investigative Committee of Russia, which states that the head of the department, Alexander Bastrykin, demanded to be informed about the progress of the investigation.
The case was opened following media reports last week that 10-year-old Eva Voronkova of Nizhny Novgorod, who suffered from cystic fibrosis, died in Moscow because the authorities in Nizhny Novgorod failed to provide her with the necessary medication.
“It was reported in the media that the child’s mother went to court to ensure that the medication was provided by officials. However, due to bureaucratic delays, the girl died without ever receiving the necessary medication,” the Russian Investigative Committee’s statement said.
Maya Sonina, the director of the Kislorod charity fund, reported Voronkova’s death on November 23. She wrote that the girl’s mother had applied to the court a year ago to get the drug “Trikafta”, which is not registered in Russia, from the state.
According to Sonina’s information, the court made a positive decision in September this year, but in the Nizhny Novgorod department, they were “fighting for the correct formulations, but the region’s budget for this year has ended. In the end, the authorities promised to provide the child with medication in February 2022.
Meanwhile, the girl’s condition deteriorated rapidly, and in November she stopped getting out of bed, according to “Takie dela” (“Such Things”).
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The drug “Trikafta” must be taken by people with cystic fibrosis for life, the cost of a one-year course of treatment is 300 thousand dollars.
The only organization in Russia that has the right to purchase unregistered drugs in the country using state funds is the Circle of Good Foundation. Russian President Vladimir Putin has signed a decree on the creation of the “Circle of Kindness” fund to support children with rare diseases from 2020. Money raised by increasing the income tax rate for citizens earning more than 5 million rubles a year will be allocated to this fund.
“Krug dobra” buys “Trikafta” only for children from the age of 12 and has finished its purchases for the year, Sonina noted.
In June, Russian cystic fibrosis patients complained that since March they have not had access to the drug “Pulmozim” (dornase alfa), which is included in the federal program for 12 rare diseases, according to Novaya Gazeta.
Cystic fibrosis is a genetic disease that affects the respiratory system, pancreas, liver and other organs.