At least fifty Russia children could face an early death because they don’t have access to the right medication. They suffer from Hunter's syndrome, a genetic disease found primarily in males. A drug does exist to treat the condition, but it is not availa

A drug called Elaprase could save the young patients’ lives. It can straighten a child’s bones and make it easier for them to talk and think as normal. This wonder drug is already treating youngsters across Europe and the US, but not here in Russia.

Snezhana Mitina was told by producers of the drug that if she found 20 children in Russia with Hunter’s syndrome they would register the drug in the country. She set up a non-profit organisation and found 50.

Elaprase is one of the most expensive drugs ever made with an estimated cost of $US 300,000 per patient per year.

But this isn’t the only reason its use is prevented in Russia.

“In accordance with existing laws, we can only use drugs registered in Russia. We have been negotiating with the company and asking them to prepare documents, so that we can consider using the drug in the treatment of our patients,” explained Professor Petr Novikov from the Department of Clinical Genetics at the Russian Ministry of Health. 

So it looks unlikely that the children will recieve their drug in the near future.