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Photo: gazeta.ru
Nearly 46.5% of Russian patients with rare diseases were forced to interrupt treatment last year due to drug shortages, according to a public opinion survey conducted in December 2024 by the All-Russian Society of Orphan Diseases. The results were cited in a report by the business publication Vedomosti.
The study surveyed 200 respondents — a collection of patients, their caregivers, and their parents. Among those who participated, 27% were under the age of 18.
The primary reason for treatment disruptions was difficulty obtaining subsidized medications, a factor cited by 70.7% of respondents. About one-third (33.7%) experienced treatment gaps lasting one to two months, while another third (32.6%) reported going without medication for more than six months. Around 18.5% said they had been denied treatment by doctors or regional health ministries due to lack of medication or funding.
Difficulties frequently arise when patients turn 19 and age out of eligibility for support from the Krug Dobra (“Circle of Kindness”) foundation. While 72.3% of patients under Krug Dobra reported having no issues accessing treatment, 55.5% of those aged 19 and older said they had difficulties receiving medications via regional initiatives or through the federal “14 High-Cost Nosologies” program.
As of now, the Russian Ministry of Health’s federal registry lists 21,615 people with orphan diseases — rare medical conditions that affect a very small percentage of the population. The average annual cost of treatment per patient is 2.76 million rubles ($35,000). The State Duma has approved, in a first reading, a draft bill proposing additional federal funding for regional governments to procure medications for patients suffering from rare diseases — a measure that could require up to 6.5 billion rubles ($82.3 million).
In late April, Russia’s Ministry of Health removed two U.S.-made cancer drugs — Revlimid and Imnovid — from the State Register of Medicines. Both were previously used to treat hematologic cancers.
Nosology is the branch of medical science that deals with the classification of diseases.
The Krug Dobra Foundation (lit. “Circle of Kindness”) is a Russian state-backed charity established in January 2021 by decree from Vladimir Putin. Its mission is to provide medical assistance to children under 18 suffering from severe, life-threatening, chronic, and rare diseases — including funding for expensive medications and medical devices not covered by existing state healthcare programs. It is the only organization in Russia with the right to purchase unregistered medicines in the country using state funds.
In 2021, Russian journalist and Nobel Peace Prize laureate Dmitry Muratov announced plans to donate part of his Nobel Prize money to Krug Dobra.