More than 40 children suffering from spinal muscular atrophy will have the opportunity to be treated with the newest, most effective drug “Spinraza” (an international nonproprietary name Nusinersen), the Russian Ministry of Health said today. This is one of the most expensive drugs in the world – the cost of the initial course of treatment is 60 million rubles for one child.
Minister of Health of the Russian Federation Veronika Skvortsova held yesterday a meeting with representatives of charity organizations on the issue of treatment of such patients. Spinal muscular atrophy is a rare and very serious disease that condemns a sick child to a slow and painful extinction. As a result of the dialogue, it was decided to create a working group and develop a road map to find ways to provide innovative, expensive treatment for sick children.
“This year we have registered in our country a drug with the international non-proprietary name of Nusinersen (trade name of Spinraza) for the treatment of spinal muscular atrophy, which is not included in the list of essential and most important drugs (Essential Medicines),” explained Deputy Health Minister Oleg Salagai. – The emergence of a drug for SMA patients is very good news. But the drug is one of the most expensive in the world. It is clear that this is a financially difficult task for the regions (namely, regional obligations)”.
Currently, 42 children under the age of two are receiving innovative treatment under the open access program – in fact, the manufacturer has provided its drug for the first stage of treatment free of charge. At the same time, since the drug is new and has just been widely used, the efficacy and tolerability of the treatment is still being studied. For sick children, this is, in fact, the only chance to survive.
But when the first stage of therapy is over, the question of purchasing the drug to continue treatment will arise. A working group under the ministry has been set up to solve this difficult but very important task, Salagai said.
In the world, such problems are solved through negotiations between public health authorities and producers of a unique medicine. There are different ways to reduce the financial burden when purchasing. For instance, when signing long-term contracts for the supply of a medicine, its producers usually reduce the price.