Ministry of Health: There is no money for medicines for spinal muscle atrophy

The Ministry of Health does not have money for the purchase of drugs for patients with spinal muscle atrophy (SMA), writes RIA Novosti with reference to the director of the Department of Medical Assistance to Children and the Service of the Debal Health of Elena Baibarina. “There is no money at all,” the official said.

In 2020, this requires 239 million rubles. The Ministry of Health held negotiations with manufacturers about the price reduction, it became 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.

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Earlier, the impossibility of buying a medicine for budget money was announced in the Ministry of Health of Kaliningrad. The drug is not included in the list of vital and most important drugs, so the authorities cannot provide them to the family of one and a half year old Milan Semenova with spinal muscle atrophy. The girl’s parents collect money for the “most expensive injection in the world” - the dose of the drug Zulgensma, worth $ 2.15 million.

The State Duma Protection 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.