The Chairman of the Duma Committee on health Dmitry Morozov during his visit to youth forum “Territory” in the Vladimir region held a meeting with Deputy Governor on social policy Mikhail Kolkova conveyer and CEO of the company “Generium” by Professor Dmitry Medlem. The parties discussed a bill concerning the extension of the list of diseases included in the program “7 high-cost nosologies” (“7 WNV”), which financing is carried out centrally at the expense of the Federal budget.
Care for patients with rare diseases is expensive and requires revision of clinical guidelines and are often characterized by monopoly producers. One of the rational state decisions in this sphere is the creation of production of the products of this range in Russia and optimization of procurement processes in this category of medicines. If the first task through the efforts of domestic pharmaceutical manufacturers manage to cope, the second raises a number of contradictions, primarily associated with the final list of diseases to be included in the program “7 WNV”.
The original idea of expanding the list of “7 WNV” belonged to the Chairman of the Federation Council Valentina Matvienko in June 2017, it appealed to the Chairman of the government of the Russian Federation Dmitry Medvedev with the proposal to include in the program for five rare diseases – paroxysmal night hemoglobinuria, hemolytic-uremic syndrome and mucopolysaccharidosis (I, II and VI).
Today in the State Duma introduced two bills – one of them paroxysmal nocturnal hemoglobinuria replaced by juvenile arthritis with systemic onset, in the second to the original list attached idiopathic thrombocytopenic purpura.
Experts note that initially five rare diseases fit into virtually any the 9-10 billion expected to be financed. Regulation of prices was easier as these five diseases are treated with only four drugs (INN). However, in the case of revision of the nosology of the amount can grow significantly. It should be noted that during the consideration of draft laws are often brought substantial amendments, which can have a positive impact on the outcome document.
“The legislative process always requires special attention, we have already had to face this in the discussion adopted in 2016, the law on biomedical cell products (BMKP), in this field we have unique competences, having at its disposal one of the most modern centers in the world BMK. Since inception the company’s priority was the development of orphan drugs, where our knowledge is graded as among the TOP5 companies in the world. I am sure that our experience will be useful when considering amendments to the current legislation”, – said Dmitry Kudlay.
The Chairman of the Committee Dmitry Morozov, in turn, marked a short time of making changes in the law and noted that the issue of the list of diseases proposed for inclusion in the bill, should be treated very carefully. He stressed that this topic is thoroughly discussed with the participation of professionals in the field of treatment of rare diseases and representatives of the public authorities. Also, given the high specialization in orfanou region, the head of the Committee suggested that the company “Generium” to take an active part in these initiatives at the Federal level.
Source of publication: http://www.ng.ru/health/2018-07-24/100_morozov2407.html