Russia’s hemophiliac sufferers begin to see hope
But the situation has changed, as the government has started giving out blood-clotting products for free and opened specialized medical centers for hemophilia patients.
For most, having to inject yourself with four syringes-full of medicine every other day would be a painful chore.
But Aleksandr says that, for him, it is a privilege. Before the government started giving out blood clotting products, he lived in constant fear.
Aleksandr is a hemophiliac – his blood does not clot naturally.
Hemophilia used to be known as "the Royal Disease" – the last Russian Tsar's heir, Prince Alexey, was a sufferer, among others.
Any cuts to the body can turn into deadly, uncontrollable hemorrhages. Constant internal bleeding into the joints causes severe damage.
Aleksandr, a successful lawyer, can barely walk now – in the future he might have to use a wheelchair.
This could have been avoided.
Accessible treatments have existed since the 1970s, but the Russian government only started distributing them for free five years ago.
“Am I bitter? No. Of course, if I was born today I would have a completely normal life. But, then again, if I was born 20 years earlier, I might have already been dead,” Aleksandr says.
Belatedly, the government is making amends to others in Aleksandr's situation.
The kind of care and rehabilitation patients receive at Russia's first medical center dedicated to hemophiliacs can totally transform their quality of life.
If the doctors did not help them, many would be dead.
“Our only wish here is that there would be such hospitals elsewhere in Russia – there are people here who've traveled thousands of miles just to get treatment,” says Dr. Vladimir Zorenko.
A course of treatment costs more than $50,000 a year per patient.
The government started paying attention after a publicity campaign led by sufferers.
“Our job was very difficult. We had to persuade our government to spend money now, even though the results – healthy people instead of disabled sufferers – wouldn't be seen for decades,” says Yury Zhulev of Russia’s Hemophilia Association.
Now, Russia's 15,000 hemophiliacs can receive free treatment.
In the future, there may be no need for such hospitals at all.