The Ministry of Health announced the absence of 239 million rubles for medicines for patients with SMA who have already started treatment

Director of the Department of Medical Care for Children and Obstetrics Service of the Ministry of Health of the Russian Federation, Elena Baibarina, said that more than 230 million rubles are needed to purchase medicines for patients with spinal muscular atrophy who have already started treatment, but there are no funds, RIA Novosti reports.

“We have calculated the needs for 2020, we absolutely need funds to provide for those children who have already started receiving treatment, they cannot stop treatment... There is no money at all. The immediate need is 239 million,” she said.

According to Baibarina, the Ministry of Health and drug manufacturers agreed to reduce the price, but it is still very high. Approximately from 2021, the purchase of drugs for all patients will require 38 billion rubles.

On February 19, the State Duma Committee on Health Protection rejected a bill on providing medications to patients with spinal muscular atrophy at the expense of the federal budget, since it did not contain a conclusion from the Russian government.

Spinal muscular atrophy is an incurable disease that causes damage to the nervous system and gradual muscle atrophy. There are three drugs in the world that can slow down or stop the development of several types of disease - Spinraza, Risdiplam and Zolgensma. Spinraza was registered in Russia in the summer of 2019; regions should provide this drug to patients. In fact, this does not happen ; only about 10 children out of 900 receive the medicine.