DIRECTIONS OF DEVELOPMENT OF THE PROGRAM OF DRUG PROVISION FOR EXPENSIVE DISEASES

Introduction: to expose current trends and difficulties in expensive diseases (ED) drug provision (DP) and describe possible ways to overcome them. Material and methods. We analyzed dynamics and specifics of ED DP. Initial data sources included: 1) Federal register of patients with ED, 2) National register of medicines, 3) List of federal budget allocations, 4) auction documentation, etc. Results. During the last decade the Number of registered patients with ED increased by 8 times. Number of medicines was 18 in 2008, and 27 in 2017-2018, and then 35 when 5 new EDs were added. Copies (generics or biosimilars) were registered for 18 original medicines/Therefore, prices were significantly reduced. 15 medicines were not having registered copies. Then, prices of them were not changed significantly. Even in the course of procurement procedures. Since 2014, the funding deficit had been growing. Current expenditures exceeded the allocated budgets. Data on effectiveness of the ED DP collected by patients’ societies demonstrated spectacular increase of life expectancy, patients’ social adaptation, and quality of life. However, efficacy of the ED DP cannot be precisely assessed due to absence of performance criteria and their centralized monitoring. Discussion. Increased needs in ED DP funding is partially offset by a decrease in prices for generics. For patent protected drugs it is possible to consider purchasing from a single supplier. Improving the monitoring of the effectiveness may include detailing in the patient register, and wider use of the Internet. To prevent deficiency in the ED DP program it is needed to adjust the amount of budget allocations on the basis of actual and expected needs. Conclusion. In the paper we proposed to consider some concrete options on evaluating and monitoring the effectiveness, finding a balance between the growth of needs and budget allocations, implementing of innovative models for medicines procurement.

high-cost nosology, multiple sclerosis, hemophilia, pituitary nanism, Gaucher disease, blood and lymph cancer, oncology-hematology, transplantation, drug supply, price, value, expensive drugs, cost-effectiveness of the budget