REMEDIUMREMEDIUM1561-59362658-3534Joint-Stock Company Chicot144710.32687/1561-5936-2022-26-3-212-216Original ArticleAnalysis of the budget expenditure for rare diseases in the subjects of the Russian FederationKomarovI. A.iliya_komarov@mail.ruKrasilnikovaE. Yu.-AleksandrovaO. Yu.-N. A. Semashko National Research Institute of Public Health1512202226321221621092022Copyright © 2022,2022This article analyzes the ratio of expenditures on drug provision for patients with rare life-threatening diseases to the total amount of expenses of the constituent entities of the Russian Federation on preferential drug provision. The share of expenditures on rare life-threatening diseases in the structure of regional expenditures on drug provision in 2019 and 2020 is presented. The dynamics of the budget for rare life-threatening diseases in monetary terms and the dynamics of regional spending on drug provision were also analyzed in comparison with 2019 and 2020. Finally, results were obtained regarding the share of expenditures on rare life-threatening diseases in the structure of regional expenditures on drug provision in the planned year 2021. Consistent federalization of drug provision for patients with certain rare life-threatening diseases, first of all, has transferred the drug provision of pediatric patients with such nosologies to the federal level. In order to further harmonize the system and equalize the availability of drug provision for adults and children with rare life-threatening diseases, it is necessary to think about the federalization of the most “costly” diseases for regions with a predominantly adult cohort of patients.rare diseasesorphan drugsdrug supplyhealthcarefinancingfederalizationbudgetregions of the Russian Federationредкие болезниорфанные лекарственные препаратылекарственное обеспечениездравоохранениефинансированиефедерализациябюджетрегионы РФ1.Taruscio D., Vittozzi L., Stefanov R. National plans and strategies on rare diseases in Europe // Adv. Exp. Med. Biol. 2010. Т. 686. P. 475-491. DOI: 10.1007/978-90-481-9485-8_262.Miller K. L., Lanthier M. Investigating the landscape of US orphan product approvals // Orphanet J. Rare Dis. 2018. Т. 13, № 1. С. 183. DOI: 10.1186/s13023-018-0930-33.Kulikov A. Yu., Komarov I. A., Pochuprina A. A. Budget impact analysis of belimumab in the treatment of patients with systemic lupus erythematosus in Russian Federation // Value Health. 2014. Vol. 17, N 7. P. A525-A526. DOI 10.1016/j.jval.2014.08.16564.Нагибин О. А., Манухина Е. В., Комаров И. А. Нормативно-правовое регулирование льготного лекарственного обеспечения в Российской Федерации // Российский медико-биологический вестник имени академика И. П. Павлова. 2019. Т. 27, № 4. С. 520-529. DOI: 10.23888/PAVLOVJ2019274520-5295.Ежегодный бюллетень Экспертного совета по редким (орфанным) заболеваниям. М.; 2021. 244 с.