More than 40% of Russian citizens suffering from rare diseases face problems obtaining medicines and medical nutrition, according to a study by patient organizations reviewed by the newspaper Kommersant.
According to a survey by the All-Russian Union of Patients, the All-Russian Society of Rare (Orphan) Diseases, and the Social Mechanics center, 40.7% of patients reported difficulties obtaining subsidized medicines. The study was conducted in January and February 2026 and covered more than 2,600 people from 86 regions of Russia.
Among the main problems cited by respondents were disruptions in medicine supplies, delays in dispensing medicines, doctors refusing to write prescriptions, and the absence of needed drugs from subsidy lists. Another 17.2% said regional authorities refused to purchase the required medicines, and the same share said they could not obtain a drug even when they were entitled to it.
13% of participants said the medicines they need are not registered in Russia. Another 5.6% said they were denied a drug because they did not have official disability status.
The study found that 36% of patients experienced side effects from the medicines they take. One in three of those who sought medical help said doctors refused to record such reactions, even though a formal report is required to switch to a different medicine. Even when side effects were officially recorded, the medicine was changed in only 60% of cases.
Kommersant reported that after the issue was discussed at a roundtable involving public organizations and government representatives, experts sent proposals to the State Duma, the government, and the Federation Council in an effort to change the assistance system for patients with rare diseases. In particular, they propose expanding the list of orphan diseases and addressing continuity of therapy as patients move from childhood to adulthood so that they do not lose access to treatment after reaching the age of 18.