Russia: Supreme Court rules drugs for rare diseases cannot be refused on financial grounds
Russia’s Constitutional Court rules on the treatment of Russians suffering from orphan diseases
27.09.2024
Article published on the ASI website
According to Kommersant, the Russian Federation’s Supreme Court has ruled on the treatment of Russians with rare orphan diseases.
Last December, Tatarstan’s State Council wrote to the Court, requesting a constitutional ruling on the legislative division of responsibility for the treatment of rare diseases.
Juveniles suffering from orphan diseases are provided with medication by the Circle of Kindness Foundation.
On reaching 19 years of age, young adults fall either into the list of 14 high-cost nosologies, or the register of 17 life-threatening and chronic progressive orphan illnesses, which are resourced from federal and regional budgets respectively.
Tatarstan deputies who sent the letter said that such practice “violates the principle of citizen equality because it makes the life and health of Russians with orphan diseases solely dependent on the availability of regional funding”.
The Court has said that citizens who have little money will be able to seek judicial and administrative protection, stating that “no circumstances of a financial or organisational nature can serve as justification for denying or delaying the provision of medication to citizens”.
In the opinion of the Court, in order to prevent a deterioration in a person’s health caused by delayed treatment, a special mechanism must be established to ensure that drugs are provided promptly to those in need in cases where State authorities of a Federation constituent entity are unable to fulfil this obligation.
“Under this ruling, the federal regulator has been instructed to make the necessary legal changes to give effect to the Court’s decision as soon as possible. Until then, responsibility for providing medication to patients suffering from orphan diseases will remain with the constituent entities of the Russian Federation”, says the Supreme Court.
