Russia: 77% of patients with orphan diseases bemoan lack of access to subsidised medicines
Seventy-seven per cent of patients with orphan diseases complained of lack of access to subsidised medicines in 2024, says a survey
04.03.2025
Article published on the ASI website
The Patients’ Association, the All-Russian Society of Orphan Diseases and the Social Mechanics Centre conducted a survey in January and February which involved 494 adult patients and 187 of their representatives from different Russian Federation regions.
The newspaper Vedomosti has published the results of the research. Among the respondents were 33 people with cystic fibrosis, 97% of whom said they had problems accessing medications.
There was also a large percentage of patients (34% of respondents) who have Duchenne and Becker myodystrophy, 89% of whom had similar complaints. Thirty per cent of those who took part in the survey had Strümpell’s disease, 79% of whom had experienced difficulties in obtaining medicines.
The most common problems raised by respondents were:
- No disease specialists in their region – 72%;
- Difficulties in undergoing specialist diagnostics – 51%;
- Problems with medical institutions in organising referrals and treatment – 43%;
- Difficulties with rehab – 42%;
- Problems in receiving inpatient treatment – 38%;
- Difficulties in receiving medication, i.e. interruption and delays in supply – 26%;
- A disease not mentioned on the list of subsidised medication – 18%;
- Regions not purchasing the necessary drugs – 15%;
- The required drug not on the list of essential medication – 13%.
Thirty-one per cent of respondents said that nothing has changed in the provision of medical care for people with rare diseases over the past year. Twenty-five per cent said that the situation had got worse while, conversely, 14% thought that things had improved.
