Chapter 3. Observing the rights of the child The right to health care 79 During 2019, the observance of the rights of children with disabilities to access to rehabilitation measures for appropriate healthcare and provision of medicines to children with rare/orphan diseases was monitored. Example As a result of the Commissioner’s intervention, the right of all children with disabilities to rehabilitation measures at the expense of state funds was ensured. To this end, amendments were made to the Law of Ukraine “On the State Budget of Ukraine for 2019” #265-IX of 31 October 2019 and the Resolution of the Cabinet of Ministers of Ukraine #309 of 27 March 2019 “On Approval of the Procedure for Using Funds Provided in the State Budget for Rehabilitation of Children with Disabilities.” According to the findings of monitoring visits to health care facilities where children are staying, as well as analysis of information of regional hospitals and orphanages on compliance with children’s right to adequate healthcare and provision of medicines during 2019, it was established that the medicines defined by the National List of Essential Medicines that are fully or partially funded from the State Budget and/or local budgets do not fully meet the needs of children. In particular, after additional examination and consultations, specialized doctors prescribe medicines not included in the National List. As a result, medicines that the children need are mostly purchased by their parents and/or sponsors. In response to this situation, in December 2019, the Commissioner requested the Prime Minister of Ukraine to revise the National List of Essential Medicines and regulate their procurement from the budget funds. Currently, the Government has instructed the Ministry of Health to address the issue and come up with appropriate proposals. The Commissioner keeps this issue on her watch list. Parents of children with cystic fibrosis who reside in the cities of Kyiv, Dnipro, Kherson, Kharkiv, Kropyvnytskyi, as well as Zhytomyr and Dnipropetrovsk oblasts also applied to the Commissioner for assistance in joining such patients to the European Register (ECFC Patient Registry). According to the Centre for Medical Statistics of the Ministry of Health, the number of children with cystic fibrosis is growing. In 2010, there were 552 such children, and in early 2019, their number increased to more than 60027. Depending on the complexity and course of this genetic disease, the indirect cost of special dietary food per child can range from UAH 20,000 to UAH 50,000 per year, which is an excessive burden for their families. In the context of the above, it should also be noted that the lack of a state register of citizens suffering from rare/orphan diseases, as requested by Article 531 of the Fundamentals of Health Legislation of 27 http://medstat.gov.ua/ukr/statdan.html. CHAPTER 3 Parents of children applied to the Commissioner due to impossibility of rehabilitation of their children with disabilities of subgroup A, although these children had medical indications and recommendations to receive appropriate rehabilitation. It was found out that only children with disabilities due to cerebral palsy were able to receive free rehabilitation measures.