The mechanisms for the admission of new drugs to the market for the treatment of orphan diseases require improvement. This opinion was expressed by Tatyana Kusayko, Deputy Chairman of the Federation Council Committee on Social Policy, speaking at the III All-Russian Forum on Orphan Diseases.
“The mechanisms for the admission of new drugs to the market need to be improved,” the senator said. In parallel, in her opinion, it is necessary to resolve the issues of pricing and the procedure for providing drugs to a specific group of patients.
The senator recalled that one of the goals of the Strategy for drug provision of the population of the Russian Federation for the period up to 2025 is to equalize the availability of drugs (including innovative ones) and specialized medical food products, regardless of the region of residence of the patient.
“Given the increasing pace of the emergence of drugs for the treatment of orphan diseases, solutions to meet the needs of the health care system must be comprehensive, otherwise the burden on health care budgets will grow exponentially,” said Tatiana Kusayko.
It is necessary to assess, according to the parliamentarian, not only the current, but also the prospective load on the country's budget.
Also, according to the parliamentarian, it is necessary to ensure the continuity of the provision of medical care for orphan patients after they reach 18 years of age: guaranteed drug provision should be retained for them even when they move to an adult health care network, the senator said.
The parliamentarian stressed that the Federation Council is closely engaged in the problems of rare diseases and the improvement of legislation in this area.