MOSCOW, March 12 (RAPSI) – The Presidential Council for Human Rights is set to request the Russian government to support a bill providing for possible procuration of Spinal Muscular Atrophy (SMA) medicines at public expense, the advisory body’s press service reports Thursday.
The Council is seriously concerned about the situation on the hands of Russian families with children suffering from this severe remediless genetic disease, the statement reads.
According to the body’s chairman Valery Fadeyev, who had visited one of such families and talked with the parents of an ill girl, the cost of equipment and other tools necessary for the 2-year child is estimated at hundreds of thousands of rubles.
However, as the kid’s mother told Fadeyev, the purchase of required medicines is a more serious problem. People suffering from SMA need one of the most expensive drugs in Russia, one injection of which costs about 8 million rubles (over $100,000); but it is necessary to make around 7 injections a year.
The Presidential Council for Human Rights annually receives applications from families with SMA children seeking to include the needed medicine in a state program to finance its acquisition from the federal budget.
The bill envisaging the procurement of the medicine was submitted to the State Duma in mid-February. However, on February 20, the document was sent to be fixed because of the absence of the government’s comments on it.
The Council’s Commission for Social Rights headed by the body’s deputy chair Irina Kirkora will soon draft a request to the government to back the bill and therefore assist in the solution for the problem of hundreds of Russian families with SMA decease patients, according to the advisory body’s statement.