Chapter 1. Observing social rights 37 In the follow-up of monitoring visit to Uzyn city ATC of Bila Tserkva district of Kyiv oblast, it was found out that the residents of the community are deprived of the opportunity to receive proper and timely primary healthcare, since the procedure for Uzyn General Family Medicine Clinic to receive patients is not regulated. The patients can only come to appointments in the morning. As a result of measures taken, since 1 July 2019, the physicians of the clinic receive patients from 8:00-20:00 according to the approved schedule. Observing the rights of citizens suffering from rare/orphan diseases Observing the rights of citizens suffering from rare/orphan diseases to free healthcare is always on the Commissioner’s watch list. Limited access of such citizens to medicines is due to the lack of a state register of citizens suffering from rare/orphan diseases, envisaged by Article 531 of the Law of Ukraine “Fundamentals of Legislation of Ukraine on Healthcare” # 2801-XII of 19 November 1992. It complicates keeping record of these patients and determining the actual need for medicines and products for special dietary intake. The repeated requests of the Commissioner to the Ministry of Health helped make sure that the Law of Ukraine “On the State Budget of Ukraine for 2020” #294-IX of 14 November 2019 allocated a total UAH 8.1 billion to the budget programme 2301400 “Provision of medical measures of individual national programmes and complex measures of a programmatic nature” for covering the needs of patients (in the initial draft of the State Budget, only UAH 4.9 billion was allocated for this purpose). The MoH Decree #2498 of 17 December 2019 “On Approving the Guidelines for Planning and Calculating the Need for Medicines, Special Foods and Medical Devices Purchased from State and Local Budgets” approved the Guidelines for Planning and Calculating the Need for Medicines, Special Foods and Medical Products Purchased from State and Local Budgets for citizens suffering from rare/orphan diseases. These Guidelines partially address the issues of providing such patients with treatment. These issues arise from the imperfect Procedure for providing citizens suffering from rare/orphan diseases with medicines and foods for special dietary intake, approved by the Resolution of the Cabinet of Ministers of Ukraine #160 of 31 March 2015 “On Approving the Procedure for Provision of Citizens Suffering from Rare/Orphan Diseases with Medicines and Appropriate Foods for Special Dietary Intake.” However, legal regulation of planning and calculating the resources necessary to cover these needs from the local budgets is still pending. CHAPTER 1 Example