While rare (orphan) diseases are a significant financial burden for health systems and access to these expensive treatments is limited, Russia has established a foundation, “Circle of Kindness”, funded by 2% of the individual income tax generated by the high-income earners. This sustainable mechanism allowed to provide medicines for over 24 000 children with rare diseases across 84 regions of Russian Federation for over $2,4 billion USD since its establishment in 2021. Heath technology assessment is used as a methodology for decisions about resource allocation.
Orphan diseases are a significant socio-economic burden for health care systems. Countries develop various mechanisms to ensure patients with orphan diseases, including children, have access to expensive medicines. In Russia, a foundation called “Circle of Kindness” was established in 2021 to support children with life-threatening and chronic diseases, including rare (orphan) diseases.
The “Circle of Kindness” Foundation is funded by 2% of the individual income tax generated by the high-income earners. In other words, every Russian citizen with an annual income of more than 5 million rubles contributes 2% of their taxes to the foundation. This sustainable and reliable financing mechanism not only guarantees the availability of orphan medicines for children with rare and life-threatening diseases but also eliminates the need for constant community fund-raising efforts.
The decision-making process about selecting patients and treatments is based on heath technology assessment (HTA) principles. The Center for Healthcare Quality Assessment and Control of the Ministry of Health of the Russian Federation provides expertise, information and methodological support in this process.
Over the three years, the list of diseases and purchased medicines has been expanded significantly. As of today, the Foundation’s list includes 92 serious and rare diseases, such as cystic fibrosis, spinal muscular atrophy, tuberous sclerosis, Duchenne myodystrophy, achondroplasia, special dressings for children with epidermolysis bullosa and other, 94 medicines and 10 types of medical devices.
The Foundation is authorized to purchase medicines that have not been registered in Russia. Breakthrough treatments become available to Russian children as soon as they emerge worldwide. In addition to purchasing orphan medicines and medical devices, the Foundation also covers the costs of medical procedures, surgeries, rehabilitation programs and psychological support for the children and their families.
The process of obtaining this care is quite simple. Parents send an application via government services web portal “Gosuslugi”. The request is immediately received by the Foundation and respective region’s public healthcare authorities. Parents are notified about each application and review stage, from the regional officials’ decision, expert council’s decision to the delivery of the required medication.
The Foundation arranges training of medical specialists involved in the diagnosis, treatment and rehabilitation of genetic diseases in children. There is also an enhanced collaboration with pharmaceutical companies, which ensures efficiency and transparency of medicines procurement. Patient community undoubtedly plays an important role in the Foundation’s work.
Since its establishment, the “Circle of Kindness” has provided help to more than 24 000 children in 84 regions spending 226 000 000 000 rubles ($2,4 billion USD equivalent) on this much-needed care.
