In particular, the Plan of Committee’s work includes the bill on amendments to the Fundamentals of Health Legislation of Ukraine re prevention and treatment of rare (orphan) diseases (Reg. No. 2461). The bill suggests determining the notion of “rare (orphan) disease” on the legislative level and supplementing the current law with the provisions that presuppose a range of legal provisions aimed at prevention and full enforcement of the respective medical aid for persons suffering from these diseases.
According to this document, a rare (orphan) disease is a disease that threatens person’s life or progresses chronically, leads to reduced life expectancy of a citizen or his/her disability, and affects a small percentage of the population (1:2000).
It was also suggested to establish that the state should provide preventive measures from rare (orphan) diseases and organization of providing the respective medical aid for persons suffering from these diseases. For this purpose, the central body of executive power that ensures state policy in the sphere of public health should:
determine and confirm the list of rare (orphan) diseases and provide official publication of this list;
create and keep a register of citizens suffering from rare (orphan) diseases in the procedure established by the Cabinet of Ministers;
determine preventive measures from rare (orphan) diseases and establish procedure of medial aid to the citizens suffering from these diseases.
The bill also contains a norm, according to which, the citizens suffering from these diseases should be provided with constant and free of charge treatment from these diseases, drugs and related food for special dietary use in accordance with their listing and amounts approved by the central executive body of executive policy in the health sphere, in the manner prescribed by the Cabinet of Ministers.The bill on amendments to the Law “On Emergency Medical Care” re protection of workers of emergency medical care brigades from illegal encroachments (Reg. No.2324a) will also be elaborated. The bill suggests amendments to the authorities of the Cabinet of Ministers to the emergency personnel.