In the bill, which Russia’s State Duma approved on 24 March, there is nothing about orphan drugs. These are drugs which are vital to those with rare diseases such as genetic and inherited illnesses and tumours. A petition has been signed by more than 10,000 people, including some prominent people such as the theatre director Galina Volchek, film director Fedor Bondarchuk, actors Sergei Garmash, Arthur Smolyaninov, Irina Rozanova, Konstantin Habensky, Dmitri Pevtsov and Olga Drosdova, RAMN (Russian Academy of Medical Sciences) Professor Pavel Vorobeev, the writer Lyudmila Ulitskaya, journalist Valery Panushkin and a host of other famous names.

The petition states “Orphan drugs are not currently manufactured in our country, because it is too expensive to make them. They have a small market and pharmaceutical companies make no profit from the sale of these drugs.  In Russia, approximately five million people, many of them children have rare diseases. These people cannot buy vital drugs in Russia and the chances of getting them from overseas in time are very small. Many sufferers just don’t live long enough to get drugs.”     

One of the drugs that Russia no longer imports is Kosmegen (which has been successfully used all over the world to treat malignant tumours of the kidneys (nephroblastoma) and some types of sarcoma. Another drug is Ervinaza (used to treat leukaemia) and there are others. In developed countries, the list of orphan drugs is approved by law and due to speedy registration there are hundreds of different drugs.

Russians are forced to import these drugs from abroad and must pay tax and customs duty on them (20% and 10% respectively of the cost of the drugs) or they import them illegally, in essence smuggle the drugs into the country. Those who initiated the petition work for charities such as ‘Podari Zhizn’, ‘Advita’, ‘Zhizn’, ‘Pomogi.org’, more than fifty charities for children and other public organisations and they are prepared to provide documentation offering an organisational and legal mechanism for the import of orphan drugs into Russia, based on the example of the EU. The initiators of the petition are also calling on Medvedev to postpone signing the bill ‘The Circulation of Drugs’ and are insisting on further discussion with senior representatives of the legislative and executive authorities on the issue of orphan drugs. To read the full petition and sign, please visit

http://uandi.ru.http://www.asi.org.ru/asi3/rws_asi.nsf/va_WebPages/538509DC70A90A1AC32576F7002603B3Rus