On May 13, the Expert Council of the Foundation for support of children with severe life-threatening and chronic diseases, «Circle of Kindness» held a meeting at the Civic Chamber of the Russian Federation and decided to include cystic fibrosis in the list of diseases, the treatment of which is financed by the Foundation. Orkambi (ivacaftor + lumacaftor) and Trikafta (elexacaftor/tezacaftor/ivacaftor)—both from Vertex Pharmaceuticals—were proposed for the treatment.
Trikafta has been approved for people who are aged 12 and older and has already been authorized by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA). In Europe, the drug is known under TN Kaftrio. Orkambi is another drug used for cystic fibrosis. It is authorized in Russia but is not included in the VED list.
Initially, it was decided to classify patients requiring drugs due to life-threatening conditions.
At the first stage, it is planned to allocate at least RUB 4.5 billion annually to provide targeted therapy for children with cystic fibrosis through the Foundation.
On May 27, 2021, the Board of Trustees of the «Circle of Kindness» Foundation upheld the proposal to provide children with cystic fibrosis with targeted therapy involving two drugs, Orkambi and Trikafta. About 400 children with cystic fibrosis will receive these drugs
Source: Federal State Budgetary Scientific Institution Research Centre of Medical Genetics