Date: a month ago   Category: Society

Kuznetsova told about increase in number of children with rare diseases - RIA Novosti, 12.10.2018


Anna Kuznetsova. Archival photo
MOSCOW, 12 Oct — RIA Novosti. The number of children with rare diseases increased by 60% since 2013, as of May, 2018 it is more than 8,8 thousand people, reported the Comissioner for the President of the Russian Federation by the rights of the child Ann Кузнецова.© of a photo from personal archive of Alyona Nachoyeva In Kabardino-Balkaria stole one million collected on treatment of the child" Children with orphan diseases increased by 60% since 2013" — reported the Comissioner for the President of the Russian Federation by the rights of the child Anna Kuznetsova at a meeting "Providing with medicines disabled children and children with orphan diseases". "For May, 2018 it is 8867 children" — she specified. According to the children's ombudsman, purchase of drugs for children with rare diseases needs to be carried out it is more centralized. "The platform of purchase becomes central, that is is bought in federation, and the budget can be combined. Anyway, it will be less money" — Kuznetsova noted. The ombudsman noted the high cost of drugs for children with rare diseases. According to her, for example, the cost of drugs in a year for one child with rare diseases in Ulyanovsk was 42,7 million rubles.© of Fotolia/Tom Wang the Expert told about the law expanding the list rare zabolevaniyrany the President of Russia Vladimir Putin signed the law on extension of the list of rare (orphan) diseases. The law is directed to transfer of power on the organization of providing persons with drugs, sick with a gemolitiko-uraemic syndrome, juvenile arthritis with the system beginning, mukopolisakharidozy (types I, II, VI) in power of the federal executive authority which is carrying out functions on development and realization of state policy and standard legal regulation in health sector. As earlier authors of the law noted, providing these patients with drugs belongs to powers of public authorities of territorial subjects of the Russian Federation in the sphere of health protection now. The Federation Council in this regard emphasizes that on budgets of territorial subjects of the Russian Federation the considerable financial loading connected with the high cost of treatment of rare diseases that does not allow regions to fulfill fully the obligations for financing of purchases of necessary drugs assigned to them in full lays down and, respectively, violates the right of citizens for health protection.

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