According to the Foundation’s press office, “as a result of the negotiations, the price of one of the most expensive drugs (Elevidys) in the world was reduced by 18%, that is by €400,000, to €2.2 million.” (FAQ Elevidys)
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What is Circle of Kindness Foundation?
In January 2021, Russian President Vladimir Putin signed an order creating the Circle of Kindness Foundation. With a list of 100 disorders covered by the foundation, its main goal is to improve the organization and financial availability of medications and medical supplies for kids with uncommon and life-threatening illnesses.
Why was Circle of Kindness foundation established?
Health care systems bear a heavy socioeconomic burden from orphan illnesses. To guarantee that patients with orphan diseases, especially children, have access to costly medications, nations create a variety of procedures. In 2021, the “Circle of Kindness” foundation was founded in Russia to help children with chronic and life-threatening illnesses, including rare (orphan) diseases.
Take from the Rich, Give to the Poor
Russia has set up a foundation called “Circle of Kindness,” which is financed by 2% of the individual income tax collected by high-income earners, despite the fact that rare (orphan) diseases pose a substantial financial burden on health systems and that access to these costly therapies is restricted. Since its founding in 2021, this sustainable mechanism has enabled the provision of medications for more than 24,000 children with rare diseases in 84 regions of the Russian Federation, totaling more than $2,4 billion USD. Resource allocation decisions are made using the process of health technology assessment.
2% of the high-income earners’ individual income taxes go toward funding the “Circle of Kindness” Foundation. Stated differently, each Russian citizen who earns more than 5 million rubles a year donates 2% of their taxes to the foundation. In addition to ensuring that children with rare and life-threatening illnesses have access to orphan medications, this dependable and sustainable financing method also removes the need for ongoing community fundraising initiatives.
The “Circle of Kindness” has helped over 24,000 children in 84 locations since it was founded, spending 226,000,000 rubles ($2.4 billion USD equivalent) on this much-needed treatment.
Price Reduction for the First Gene Therapy Elevidys in Russia
Together with the Federal Antimonopoly Service, the Circle of Kindness Charitable State Foundation was able to significantly lower the cost of Elevidys (delandistrogene moxeparvec), the first gene therapy manufactured by American Sarepta Therapeutics. It is the first single-dose medication ever developed for gene replacement treatment in individuals with Duchenne muscular dystrophy (DMD). In Russia, the medication is not registered.
69 Children in Russia Received Elevidys Gene Therapy
With the exception of children who have deletions in exons 8 and/or 9 of the DMD gene, Elevidys is recommended for children ages 4-5 who have a verified mutation in the DMD gene. Clinical trials have yielded the best results for children in this age range, according to the Foundation. They started purchasing this medication in 2024. 69 children with DMD have already received the single-dose gene replacement medication, which was made available to them in Russia, one of the first countries to do so. Between 2021 and 2024, the Foundation helped 531 children who had the illness.
Learn More: Russian Biotech Company Generium has Begun Clinical Trials of a Gene Therapy for Duchenne Muscular Dystrophy
