Nizhny Novgorod resident Vladimir Piskunov, who lost his 16-year-old daughter to a rare disease, created a petition demanding the resignation of the head of the regional health ministry David Melik-Huseynov.
As Vladimir told NewsNN, his daughter Alice died on the night of July 15 at the age of 16. The girl suffered from idiopathic pulmonary hypertension. The disease is included in the list of life-threatening rare orphan diseases, leading to a reduction in life expectancy or disability. To prevent the disease from progressing, the child needed expensive medications. But the family, according to Vladimir Piskunov, received them with delays or did not receive them at all.
The family was in litigation from 2011-2012 and finally won the court, but this did not improve the situation. The family received five rejections, and two years ago, the girl’s condition began to deteriorate. “In March of this year, we were prescribed lag therapy of three components – we needed Macitentan, Sildenafil and Illoprost. But for a month the doctors could not send our application to the Ministry of Health, and when they sent it, they were refused – the ministry said that under the age of 18, according to the law, they could not buy us medicines. The child was getting worse and worse, we were told that a lethal outcome is possible … Alice died, we did not see any medications, ”said the father of the deceased girl
Source: Rosbalt
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