The Ministry of Health promised to provide Russians with rare diseases with medications, but set conditions.

Starting in 2026, the Russian government will begin allocating funds from the federal budget to purchase medications for patients with rare orphan diseases. Currently, these expensive medications must be paid for from local budgets. But the funds are insufficient.

However, the Ministry of Health will only pay subsidies if the necessary medications are available. will rise in price by 20% compared to the previous year or the number of patients with rare diseases will grow by 15%.

Experts consider these conditions to be difficult to achieve and are confident that the situation with medications will not change.

“This criterion may encourage the manufacturer or distributor to raise prices,” says the head of the legal department of the Sunflower Foundation. Maria Posadkova"But sometimes, on the contrary, pharmaceutical companies are not allowed to increase product prices—for example, due to the rules governing the list of vital and essential drugs. This would make it impossible for the region to receive subsidies."

A list of 17 rare diseases has been established by government decree. In total, more than 21 thousand people, who were diagnosed with them. But they have to fight for the right to life.

For example, NeMoskva has written about it many times Dmitry Bakhtin — to the boy's father Misha A patient with spinal muscular atrophy from Yekaterinburg. The drug Spinraza, which Misha needs, costs about 5 million rubles per injection—to ensure his child receives it, Dmitry had to stage solo pickets.

The Russian Federation did not have another 50 million rubles a month to save the life of a 23-year-old Tatyana Drozdova from Novosibirsk. The girl had a severe immune deficiency called ADA-TKIN. Tatyana died this summer.