Costly cure drives medical migration in Russia

Parents of children in Russia with a debilitating genetic disorder have another battle on their hands – the quest to access treatment that could prolong their young ones' lives. The medicine is available in Russia, but not for everyone.

­For most parents, there is nothing more sickening than seeing their child in a hospital bed. But not for Oksana. Every drop that runs through the IV line adds to her hope that her son Petya will have a chance in life.

“I'm so used to worrying that I still can't fully grasp what is happening,” says Oksana Ryabinina, whose child has Hunter syndrome. “Very few people believed we'd find the money, yet somewhere deep down I think I knew that everything would be fine.”

One bottle of this drug costs more than Oksana's husband makes in a year. And their seven-year-old boy needs four bottles each month.

Hunter syndrome means that Petya lacks a crucial enzyme that helps channel toxins out of his body. There is no cure, but with the treatment that is available patients can live well into their 40s and beyond.

“Getting this drug changes everything both for us – Petya's doctors – and for his family,” deputy chief physician Elena Saprykina explains. “The eight years without this therapy have already damaged his vital organs. But now we have a hope of not only stemming the development of negative symptoms, but also reversing some of them.”

The Oryol Region, where Petya's family lives, is an impoverished, subsidized area in Central Russia. The only other patient here with Hunter syndrome died earlier this year, after his mother's frantic search for funds.

Oksana, who was at the funeral, says it drove their decision to move to a treatment-providing municipality rather than count on the generosity of the local administration. But now that the Oryol Region is on board, she is terrified that her relocation idea will strike other unfortunate families.

The local authorities have reserved over $1 million to buy drugs for Petya, which should last till the end of next year. This is life-saving news for the boy's family and his doctors, but they are very reluctant to talk about it. They are not superstitious, but simply afraid that parents of children with the same condition from less-generous areas of the country will try to move their kids here.

Accessing care for Hunter syndrome in Russia is still a zip-code lottery, and Petya's chances of continuing his treatment depend a great deal on how many children he is competing against.

A million dollars every year… This exorbitant price tag will be attached to Petya's life for the rest of his days. And while local officials say they are committed to providing his treatment for as long as it takes, they say it is already testing the limits of the regional budget.

“Other regions have already experienced this: once they started treating these patients, their number increased several times over,” says Alexander Medvedev, head of Oryol Region's Department of Health. “If this were to happen here, I simply do not know how we would deal with it. I think adding two or three such patients would be simply catastrophic… but there is nothing we can do to prevent this.”

Since the city of Moscow started providing treatment for this rare condition a few years ago, the number of patients has tripled, mainly through migration. And it will continue to rise, says Snezhanna Mitina, unless Russia introduces country-wide coverage for Hunter syndrome.

Her son was the first in Russia to get the drug, and she believes all sick children should be entitled to it, regardless of where they happen to be born.

“I was lucky to live in a city that agreed to take care of my child, but I cringe every time I have to talk to a mother whose baby is denied the treatment,” Mitina admits. “I realize that money is the decisive factor here. And I do realize that the life of my child costs a lot. But we didn't choose this illness. If we could, we would definitely have opted for something cheaper.”