Kathryn Knight. "The plight of the Russian cancer children"

     Nastya Kuzmina's parents had to sell all their furniture and livestock just to pay for her initial treatment
     When three-year-old Nastya Kuzmina came down with a cold earlier this year, her mother was not, at first, unduly concerned. In Orel, a remote western Russian province hundreds of miles from Moscow, a cold is an annual ritual for children and adults alike in the chilly winter, Elena's cheerful daughter had always been robust and healthy.
     But the cold did not go away. It got worse, sucking the energy out of Nastya's tiny body. Within weeks, the bright-eyed toddler who loved reciting poems and drawing dolls' dresses was too weak even to get out of bed.
     The local doctor knew something was badly wrong, but could not say for certain what it was. He suspected cancer, but did not, he explained to Nastya's petrified parents, have the facilities he needed to make a proper diagnosis. The family must go to Moscow. Throughout the long and gruelling train journey up country, the family prayed there had been some mistake.
     Instead, after a barrage of tests at Moscow's Russian Children's Clinical Hospital, they got the news they had been dreading. Nastya's endless cold had been an early symptom of leukaemia, and without intense radiotherapy, her chances of survival were slim. But radiotherapy costs money - money the Kuzminas don't have.

 'Terrible hardship'

      They have already endured terrible hardship just to make the long journey across Russia to the capital from their humble farm. "We sold almost everything we owned in our village to pay to come here," says Elena. "My husband Dmitry sold our cattle and hens, and even our furniture - but still we don't have enough money to cover the expenses of living in Moscow and the special diet and medicines that Nastya needs."
     From her bed, Nastya, her face puffy from the cocktail of drugs she must take every day, smiles. She understands that she is sick, but she has no concept of the desperate battle her family face to fight for her survival. Lying just a few beds away from Nastya in the hospital ward, 11-year-old Arseniy Azarenko is, however, old enough to understand only too well.
     Last summer his mother Tatiana was celebrating him coming top of the class at his school in Ulan-Ude, a Siberian outpost 3,000 miles east of Moscow.
     It was a poignant moment for both mother and son: Arseniy's father had died in a car crash seven years earlier and they knew how proud he would have been.
     Tatiana bought her son a computer and found him a much coveted place at a summer camp as a reward. The summer camp asked for routine medical checks and, in an instant, the lives of the Azarenkos were turned upside down.
     The medical showed that Arseniy had a high leukocyte level in his blood. He, too, had leukaemia. "Tears were rolling down my face. In my head I was shouting: 'Someone has got it wrong! I have a healthy son. It cannot be true,'" 34-year-old Tatiana recalls. "I didn't know what to do, who to turn to."
     The illness took hold rapidly: within two months Arseniy couldn't play football and, listless and drained, had lost interest in his favourite programmes and books.
     "We had to beg and borrow money to come to Moscow for medicine that they couldn't provide at home," says Tatiana.
     The medicine did not work. Arseniy needed donor cells, but with no stem cell bank in Russia, donors must be found from abroad at great expense. A German donor was found for Arseniy, at a cost of many thousands of euros.
     As the moderately paid manager of an insurance company, Tatiana could not possibly afford it. The operation was possible only because her local newspaper ran her story and the money was raised through sympathetic readers. "Otherwise my son would have had no chance to survive," Tatiana says.
Arseniy needed two operations and is still desperately weak as he recovers from the last one, performed just a month ago. His body is exhausted from fighting the cancer and from trying to adjust to the "foreign" donor cells.
     "I can't describe what he has been through," his mother says. "During all this I could see nothing in his eyes but pain: pain in his bones, lungs, stomach, head, in every part of his little weak body. Once, Arseniy could remember every type of dinosaur and the period it lived on the planet. Now, instead, he can say by heart what amount of leukocytes a healthy man should have."
     Arseniy is a bright boy, and he knows that without further treatment the outlook is bleak. "My boy badly needs more medicine, but we cannot afford it and people are no longer so generous," Tatiana whispers, her eyes shiny with ears. "The last time we asked, all we gathered were a couple of handfuls of coins from his classmates."

 'Exhausted parents'

      You do not have to move far in the cancer ward at the hospital to find similar tales. At every bedside, exhausted parents all have their own of hardship.
     These are the kinds of story that, perhaps, were to be expected decades ago, in the grim Russia of the Cold War period. Yet now, in these more enlightened days, they are still all too common.
     Each year, around 5,000 children in the country are diagnosed with leukaemia and childhood cancers - a number that is no worse, relatively, than any other country in the world.
     Where Russia diverges from the developed world is in what happens next: unlike Europe and America, Russia's chronic lack of resources all too often makes a cancer diagnosis a death sentence.
Ten years ago, 70 per cent of children in Europe who had been diagnosed with the disease were still alive five years later. In Russia, the figure was 10 per cent.
     Today, the statistics are little better. With few hospitals equipped to cope with the illness, and those that can always full to capacity, doctors have to turn away even patients who have a good chance of recovery. Only accidents cause more deaths than blood illnesses among Russian children.
     It is a horribly sobering concept, one that Russian politicians, doctors and charity workers alike have battled over the years to try to address, with little success.
     Today however, there is renewed hope: a foundation has been established in the UK which aims to improve the quality of care available for Russian children diagnosed with cancer.
    The Raisa Gorbachev Foundation, established in memory of the former First Lady of Russia, has brought together figures from the world of politics, showbusiness and royalty - among them former Soviet President Gorbachev, Earl Spencer, Tatler editor Geordie Greig, film mogul Harvey Weinstein, Madonna and the Lebedev family (part-owners of the Russian national airline Aeroflot) - in a bid to help save the lives of thousands of children.
     On Saturday, June 10, Earl Spencer will throw open the doors of Althorp, his ancestral home, to stage a glittering charity event formally to launch the foundation. It will be the first time the gates of Althorp have been opened to a private function of this kind.
     The event, billed as a Russian Midsummer Fantasy, is not without its own poignant backdrop, however. Before her death in 1999, Raisa had been a passionate fundraiser for better cancer treatment for children, using her husband's Nobel Peace Prize money and the royalties she received from the publication of her autobiography to help buy supplies and equipment for the resource-starved hospitals throughout Russia.
     Together with her husband, she established the international organisation World Haematologists for Children, and became patron of the Children's Leukemia Association in Russia, She was not to know then that the debilitating illness that slowly took hold of her during the 1990s was the onset of her own leukaemia, which would eventually take her life in September 1999.
     Given her crusade it was a bitter irony, and more than 15 years on, today's plight of the youngsters in the Russian Children's Clinical Hospital is a potent reminder that much work still needs to be done, despite all her efforts.
     "It's impossible to underestimate how many adults and children suffering from cancer can't receive the essential medical help they need," Evgeny Lebedev, President of the Raisa Gorbachev Foundation, told the Mail this week.

 'Lack of resources'

     "The problem is that Russia simply does not have the resources compared with other countries. There are only 12 centres in the entire country to deal with children's cancer and only three that can perform surgery.
     "Each year there are fewer than 70 operations performed in Russia, whereas about 7,000 are needed."
     By contrast, hundreds of operations take place in Britain on the NHS every year. There are 1,500 new cases of cancer in children diagnosed here annually, but around 76 per cent are cured.
     Mr Lebedev continues: "We want to help change the situation in Russia by providing a new centre for treatment and care, and by helping to fund the establishment of our own stem cell bank in the country."
In 2002, the foundations were laid for the Children's Centre of Haematology and Transplantation in St Petersburg, funded by the Lebedev family and the Raisa Gorbachev Foundation. But 14 million (just over £9.5 million) is needed to buy essential equipment, drugs and medicine.
     Back at the Russian Children's Clinical Hospital, Dmitry Balashov, one of the hospital's chief doctors, knows only too about lack of equipment and and the terrible human anguish caused by the failure in cancer care. Mothers have wept at his feet as they plead with him to admit their children for treatment.
     "We have huge problems treating cancer in Russia," he told the Mail. "People can stand in a line for years to get into a specialised hospital like this one. But they don't have the time to wait - this is the tragedy.
     "The kids who do get to come here are desperately ill and normally mums have no choice but to leave their jobs and stay with them, losing what little money they were bringing into the family."
     At his side, shyly clutching his hand, is seven-year-old Anya Sorokina. Her swollen face may not suggest it, but she is one of the lucky ones.
     Anya came home from nursery school four years ago with bruises on her legs, bruises which did not fade with time. The doctor in her home town of Vladimir, 100 miles from Moscow, diagnosed leukaemia and Anya was given a gruelling course of chemotherapy.
     It was not enough. The cancer came back and, six months ago, she had to undergo bone marrow treatment, funded by donations from friends and family. She is still recovering, her swollen face testimony to the ordeal her body has been through as it tries to fight the invasion of virulent cancer.
     Her parents, Alexey, a sales manager, and Olga, understand the notion of struggle - they have spent everything they have in the pursuit of a cure for their daughter, and they are at the end of their tether trying to raise the money for the ongoing medicine she needs.
     But they will not give up hope. Their daughter, they say, was once the most beautiful girl in her class - and they are determined that she will be again. For many years, hope was all they had. Perhaps now, they, and the countless other families like them, will have more than a fighting chance, too.

"Daily Mail", June 1,2006