Darya Semyonova, who came out with a poster "I want to live" to the building of the Ministry of Health, passed away

Roszdravnadzor restricted access to the Russian market for imported drugs that could prolong her life.

The girl had cystic fibrosis, a genetic disorder that affects the respiratory and digestive systems. This disease cannot be treated, but imported medicines can significantly prolong the life of a sick patient. They are not registered in Russia. As a result, sick patients hardly live up to 20 years, while the average life expectancy with this disease in Western countries reaches 45 years. Almost 80% of patients with cystic fibrosis in Russia are children. The country is among the leaders in this indicator among European countries.

On the air of Dozhd, Irina Dmitrieva, a representative of the All-Russian Association for Cystic Fibrosis Patients, said that now patients with cystic fibrosis in Russia are forced to undergo long courses of antibiotics. However, the quality of such treatment has not been proven. Patients literally have to fight with the authorities for the opportunity to receive quality treatment. According to her, the authorities should provide the patients with medicines not on the basis of the “buy the cheapest” principle, but in terms of the effectiveness of this drug.

Earlier, the All-Russian Union of Patients (VSP) appealed to Russian President Vladimir Putin with a request to pay attention to the shortage of 42 vital drugs in the Russian Federation. This list also includes drugs for the treatment of cystic fibrosis.