817 children with SMA are currently living in Russia
The new fund will distribute 60 billion rubles. among patients with rare diseases, including spinal muscular atrophy. This will help provide medicines to 25 thousand children
Deputy Prime Minister Tatyana Golikova, after a meeting with the head of state Vladimir Putin, said that the president proposed to create a special fund to manage funds allocated for medical and drug assistance to children suffering from orphan diseases.
In 2021, 60 billion rubles should be received for the treatment of children by raising the income tax rate to 15% for individuals whose incomes exceed 5 million rubles a month.
“We are now at the stage of working out the final decision, but today we can say that the main freelance specialists have presented proposals for financing 19 orphan diseases from this source, including spinal muscular atrophy,” Golikova explained.
Also, children with 29 other non-orphan diseases of oncological, endocrinological and other areas can apply for the help of the foundation. Fixed assets will be used to purchase expensive drugs.
According to the Deputy Prime Minister, the Board of Trustees will include reputable citizens involved in charity work and heads of medical organizations. An expert and ethical council made up of freelance specialists from the Ministry of Health will determine the patients who will be assisted.
According to RBC, 817 children with SMA are currently living in Russia, 36 billion rubles are needed for their treatment. But most likely, more than 200 patients will remain without such a source of funding. The average cost of one injection is about 8 million rubles, a patient needs 6 injections per year.