Improvements needed in thalassaemia treatment

If you want to see Iraq’s medical system at its best, go to the small health centre behind the paediatric training hospital in downtown Sulaymaniyeh, northeastern Iraq. The five wards are small and neat, the corridors are brightly painted with cartoon characters, and the floors are spotless. Dirt is a major issue for the 18 children here, all severely weakened by chronic anaemia. They are suffering from thalassaemia, a congenital blood disease almost unknown in the West, but widespread throughout the Middle East. Very few of them will live much past 25. Without the blood transfusion service offered here, though, they would almost certainly not be alive today. Untreated thalassaemics succumb rapidly to jaundice, hypertrophy of the spleen and finally heart failure, usually dying before the age of five. Propped up on a pillow in the closest of the four beds to the door, nine-year old Rebwar is strong enough to smile but not to speak. His father Ismail Qadir explains that this is the worst time of the month. “He’s usually a lively kid,” he told IRIN. "He goes to school with everybody else, runs round with everybody else. But after about four weeks, he begins to sleep badly and complain of pain.” That’s when his parents bring him here to be given new blood. When he takes his son home this evening, Ismail Qadir will also be given a vial of desferoxamine, a molecule that combats the accumulation of iron in the blood caused by frequent blood transfusions. Rebwar needs daily injections. “Having thalassaemic kids is a big load to bear,” sighs Shukriye Hama Amin, two of whose eight children suffer from the disease. Unlike Ismail and Rebwar, she and her family live outside Sulaymaniyeh, and she often finds it difficult to find money for the monthly bus fare. She had to rush her 12-year old daughter Namo to hospital last year when her spleen swelled up. Namo is now too weak to go to school. A medical assistant adjusts the blood bag attached to her left arm. “She’ll be chattering away again by tomorrow,” her mother assures him. “This clinic used to be inside the paediatric hospital,” hospital director Dr Iklas Nimmat Jwamer told IRIN. “But the children here are acutely susceptible to infection, so we needed a separate centre.” The opportunity for that came in 1991, when NGO Kurdistan Life Aid provided enough money to convert this former Agriculture Ministry building for medical use. It has since been rehabilitated by Swedish NGO Qandil, with Peace Winds Japan providing a minibus to ferry some of the patients to and from their homes. But the success of the centre is really down to its staff, the Health Ministry - which funds it - and a parents’ association, which has worked long and hard to publicise the disease. “In large part it’s thanks to the parents’ monthly newspaper that we have never had any shortage of blood,” Dr Jwamer explained. “And they’ve been campaigning hard on local radio and television against inter-marriage in families known to carry the thalassaemia gene.” “Kurdish areas were almost entirely cut off from the rest of Iraq between 1991 and last year,” Qandil’s medical adviser Giorgio Francia told IRIN. “But the clinic staff and the parents’ association somehow managed to maintain relations and exchange information with other centres south of the line.” “They are doing an incredible job,” he added. Though she knows marrow transplant techniques developed in Europe to cure thalassaemia are far too expensive and complicated for her hospital and staff, Dr Jwamar believes a lot could still be done to improve the centre. “Provision of drugs has improved since the fall of Saddam, thankfully,” she says. “But we’re still only able to diagnose thalassaemia in babies when the first symptoms appear six months after birth.” Ideally she would like to be able to present parents with the possibility to abort fetuses carrying the disease. But pre-natal testing requires haemoglobin electrophoresis techniques, which her hospital still doesn’t have. “It’s not for want of trying,” she said. “I’ve been asking the World Health Organisation (WHO) to provide us with these since 1997.” The same goes for blood component separators, which would permit the clinic’s staff to reduce the volume of monthly transfusions. “It’s plate cells the patients need, not blood,” Dr Jwamar said. “At the moment we have to give the patients more than they need, and many suffer from allergic reactions.”