Anti-thalassemia efforts undermined by determined couples

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Despite the Kingdom’s efforts to reduce the spread of thalassemia through obligatory pre-marital blood tests, many couples who are carriers of the disease insist on getting married, an expert said on Thursday.

Basem Kiswani, president of the Jordanian Haemophilia and Thalassemia Society, said the number of new thalassemia cases annually had dropped by 50 per cent since the enforcement of the Pre-Marital Blood Test Law in 2004.

“When tests prove that a couple are carriers of thalassemia, we explain to them the nature of the disease and how it is going to affect their children, but some of them refuse to listen and insist on getting married,” noted Kiswani who also heads the thalassemia patients unit at Al Bashir Hospital.

Currently some 25 to 30 new thalassemia cases are registered in Jordan each year, compared to between 40 and 60 cases prior to the implementation of the law, he told The Jordan Times yesterday.

The Pre-Marital Blood Test Law obliges couples wishing to get married to carry out blood tests to ensure they are not afflicted with thalassemia in a bid to reduce the spread of the disease. The legislation does not prevent carriers of the disease from getting married.

According to Kiswani, there are currently around 1,000 Jordanians living with thalassemia and receiving treatment free-of-charge at hospitals.

He noted that the government’s annual spending on thalassemia patients reaches JD8 million, while both thalassemia and haemophilia patients need some 25,000 blood units per year.

According to a study conducted in 2007, 3-4 per cent of Jordanians carry the thalassemia gene. The study also indicated that 50,000 individuals were tested for thalassemia in 2007, with 86 testing positive for the disease.

Thalassemia is a genetically determined defect in haemoglobin synthesis that leads to stunted growth and can in some cases be fatal.

Mohammad Tarawneh, head of the Health Ministry’s non-communicable diseases department, said 1,200 thalassemia cases are registered in Jordan, noting that the expected annual increase ranges between 80-90 new cases.

Individual carriers of thalassemia are usually healthy but when combined with another carrier, there is a one in four chance that thalassemia could be passed on to their children.

On Saturday, the Jordanian Haemophilia and Thalassemia Society will mark World Thalassemia Day by holding lectures on the disease.

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