The Ministry of Health of the Russian Federation will accelerate access to unregistered drugs and drugs manufactured according to individual prescriptions for orphan patients in cases when there are no therapies for the disease that are registered in accordance with the established procedure. This was stated by Mikhail Murashko, the head of the Ministry of Health of Russia, during the IV All-Russian Orphan Diseases Forum, as the official website of the All-Russian Union of Patients reports.
As the Minister noted, in the vast majority of cases orphan diseases are inherited. They account for a significant share in the structure of infant mortality and disability. Therefore, one of the priorities of the health system is the prevention of their occurrence, their diagnosis, treatment, and rehabilitation of the affected persons.
Thanks to the introduction of neonatal screening for five congenital and hereditary diseases throughout the Russian Federation since 2006, more than a thousand patients are identified at the earliest age every year. They are then provided with the necessary medical care in a timely manner, which helps to avoid disability and severe complications.
According to Murashko, the Ministry of Health is taking measures aimed at introducing expanded neonatal screening for 36 hereditary congenital diseases from 2023. Russia currently provides patients with 28 orphan diseases with medicines at the expense of budgets of different levels.
“The Ministry of Health is working on amendments to the legislation. These changes will create an opportunity to provide medicines to patients with rare diseases for the treatment of which there are no medicines registered in the prescribed manner; the new rules will also accelerate access to medicines manufactured based on individual prescriptions by pharmacy organizations. In some cases, this will allow to reduce the cost of medicines,” Mikhail Murashko said.
According to earlier reports, patients with orphan diseases in the Russian Federation complained of difficulties with medicines supply.
