‘There’s no money. You shouldn’t come here.’. Russian doctors and families are fighting to access the medicine sick children need to survive

A little girl from Russia’s Penza Oblast received a rare diagnosis: a genetic disorder that causes increasingly severe epilepsy, limiting the girl’s life expectancy to her teenage years. An effective treatment for her condition exists, but only outside Russia: within the country, the medication she needs is not officially registered. The girl’s parents used established laws to request government funding for the drug and even took government officials to court in the process, all to no avail. They are not alone: many Russians need lifesaving medications that have not been registered in Russia and cannot be sold in pharmacies there as a result. Accessing unregistered drugs requires incredible and sometimes even illegal efforts. Meduza correspondent Darya Sarkisyan reports on the lives of Russians who need unregistered drugs and explains what Russian residents do if they need immediate access to medications that cost several hundred thousand dollars a year.