Greek crisis gets under skin of vulnerable

Before the Greek crisis, Zoi Gkezerva received €4,500 each month to help treat her daughter’s rare genetic disorder, which leaves her with extensive skin blistering. Now, she gets almost nothing. “We don’t have much time left; we’ve already used up almost all our savings,” Mrs Gkezerva says. Her husband, a builder, is unemployed and her own job in a tourist restaurant is seasonal. But her daughter’s condition, epidermolysis bullosa, has been downgraded so the government will now only pay 10 per cent of the costs of the expensive, imported dressings that the two-year-old needs. A child with the same disorder died in Greece last month, and Mrs Gkezerva fears for her little girl’s life. As politicians wrangle, patients are suffering, and none more so than those with rare diseases. Such illnesses, defined as those affecting fewer than five in every 10,000, are poorly understood and often extremely costly to treat. “By next year there will be deaths,” warns Vicky Biliou, whose seven-year-old daughter has Prader-Willi syndrome, a chromosome disorder that leaves children with hormonal, weight and behavioural problems. Drug companies making specialist treatments for rare disorders typically charge tens of thousands of euros per patient each year. Yet because the numbers affected are small – and the treatments often make the difference between life and death – most countries have usually paid up. In Greece, that is near breaking point. Moreover, requests for costly drugs are approved by a committee of doctors, but the committee’s scheduled meetings have been repeatedly postponed. “For the last three months no one has been getting approvals,” says Ms Biliou, whose doctor anticipated the delays and managed to win her a half-year supply of growth hormone for her daughter, costing €3,000 a month. Others have not been so lucky. “I know of two newborns whose parents have been told they will just have to be patient,” Ms Biliou says. Broader support is also under pressure. The Greek authorities assess disability, with those rated below a certain level receiving far fewer benefits. Now these too are coming under review. Euterpi Floka, who has familial Mediterranean fever, worries about the cost of the quarterly assessments. From June she will have to pay 40 per cent of the costs of the assessments. “We feel less cared for than ever before,” she says. Many see the changes as necessary to tackle past inefficiencies in the healthcare system. But, says Dimitrios Synodinos, director of the Greek Alliance for Rare Diseases: “Quite a number of rare disease patients have had their disability percentage reduced so much that they are in very, very difficult situation.” Ms Biliou says her daughter is facing a cut in treatment at her next appointment. “I will have to choose whether her arms or her legs will be massaged each month,” she says. That would be difficult enough for a family already spending most of its disposable income on support for their daughter. But Ms Biliou herself has been invalided off work, and her husband recently had a 15 per cent salary cut. The Greek economic crisis is hurting the most vulnerable most of all. << ΠΗΓΗ FT >>