Russian President Vladimir Putin signed the Federal law from 03.08.2018 No. 299-FZ “On amendments to the Federal law “About bases of health protection of citizens in Russian Federation”.
The Federal law expands the list of life-threatening and chronic progressive rare (orphan) diseases, leading to reduced life expectancy or disability for which treatment drugs are purchased centrally at the expense of budgetary appropriations of the Federal budget. We are talking about hemolytic uremic syndrome, juvenile arthritis with systemic onset and mucopolysaccharidosis I, II and VI types. Thus, the program, which is informally called “Seven nosologies”, expanded to twelve. According to the calculations of senators, namely the Federation Council in the Duma introduced the relevant amendments for the treatment of patients with diseases newly included in the program are required to purchase eight drugs in the amount of 10 billion virtually any per year.
As of June 25, 2018 in the Federal register of life-threatening and chronic progressive rare diseases the five diseases included 2130 patients, of which 1583 were children.