The Krug Dobra Foundation will receive funds for drug provision of children with SMA

As you know, one of the most expensive drugs in the world is a drug for the treatment of spinal muscular atrophy. One injection costs more than 2 million dollars, which is more than 120 million rubles. Last year, this drug was collected for patients literally by the whole world.

And so the situation began to change. Moscow hosted a round table “Medicinal provision of patients within the framework of the VZN and the Circle of Good Foundation: changes in legislation – risks and opportunities.” As it was announced, from next year, drug provision for patients with SMA under the age of 18 will be provided at the expense of the Circle of Kindness fund.

As Yan Vlasov, Chairman of the Council of Public Organizations for the Protection of Patients’ Rights under the Federal Service for Surveillance in Healthcare, noted, now it is necessary to provide access to treatment for complex nosologies for all patients, regardless of age.

“Our task is not just to raise the issue, but to come up with a solution for those patients who cross the 18-year-old barrier and remain virtually without drugs – this is nonsense,” said Yan Vlasov. – What is the way out of the situation? It is not easy to talk, but in a good way to give a mechanism. Here it is important for the whole world to find a way out of the current situation, which must be resolved.

The roundtable participants decided to apply to all possible authorities, in particular, to the State Duma, the Ministry of Health, and other authorities, in order to provide innovative therapy to all patients who need it as soon as possible.

Mona Platonov.