The creation of the National Register of Patients with rare diseases will help to solve the problem of timely and uninterrupted provision of orphan patients with medicines, Valeriy Pysarenko, Member of Ukrainian Parliament, believes.
With the corresponding request, the parliamentarian addressed the Prime Minister of Ukraine, Vladimir Groysman.
"Frequent interruptions in the supply of medicine negatively affect the quality of life of patients." If the patient has already started giving medicines, it is impossible to stop the therapy, otherwise the person will bear the symptoms of the disease with pain ", - the People's Deputy says.
The creation of the Register, according to the politician words, will provide lifelong support for patients with orphan diseases through a specially created target budget. Also, Valeriy Pysarenko asks the Cabinet of Ministers to increase the size of the medical subvention to local budgets for the treatment of patients with rare diseases.
"In the Kharkiv regional budget for 2018, 3.5 million hryvnias have been pledged for a medical subvention to purchase medicines for patients with orphan diseases, when more than 30 million hryvnia is required," - the People's Deputy explains.
According to the parliamentarian worlds, a similar situation exists in other cities of Ukraine, so the problem of financial assistance from the state to purchase medicines is already a matter of life and death.