Translated material
Ministry of Health: There is no money for medicines for spinal muscle atrophy
The Russian Ministry of Health will not purchase medicines for patients with spinal muscle atrophy (SMA). The department does not have money for these drugs, RIA Novosti reports with reference to the director of the Department of Medical Assistance to Children and the State Foreword Service Elena Baibarina. “There is no money at all,” the official emphasized.
In 2020, the Ministry of Health needed to find 239 million rubles for these purchases. Representatives of the department held negotiations with manufacturers of drug reduction, it has become less, but still remains high. Since 2021, 38 billion rubles will be required to purchase drugs for all patients.
According to the deputy head of the United Russia faction, Andrei Isaev, in Russia, according to preliminary estimates, about 700 children suffer.
Earlier, the Omsk Charity Center "Rainbow" announced a collection of funds for the treatment of a five -month -old girl Ani Novozhilova. Doctors diagnosed her with spinal muscular atrophy. Without proper treatment, such patients in Russia do not live up to two years. The cost of a full course of 160 million rubles - for a girl it is necessary to purchase a drug produced in the United States. At the same time, according to Russian laws, this medicine is not included in the list of vital and most important, so the authorities cannot help the child.
The State Duma Health Committee rejected the bill of deputies from the LDPR on the provision of patients with spinal muscle atrophy at the expense of the federal budget.
SMA - a genetic disease. Due to the defective gene in the body, the production of SMN protein is disturbed. Without this protein, motor neurons - the nerve cells of the spinal cord, responsible for coordination of movements and muscle tone - die off, the signal in the muscles of the legs, back and partly does not go.