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Dubai: The UAE is still seeing newborns with thalassaemia, a genetic blood disorder, despite a year-old law mandating couples to screen for the gene before marriage.
These developments have prompted doctors to call for strict enforcement of the law on World Thalassaemia Day.
The UAE passed a law in April last year, requiring all engaged couples to undergo screening for haemoglob-inopathies, namely thalassaemia and sickle cell anaemia, on top of HIV/Aids and Hepatitis B and C, in order to obtain a marriage licence and marry here. Health officials have been touting the necessity of undergoing pre-marital screening since 2001.
However, six years later, pre-marital screening on the genetic diseases has still not been fully implemented in some parts of the UAE.
New patients
Dr Khowla Belhoul, director of the Thalassaemia Centre at Al Wasl Hospital, told Gulf News that the centre was still receiving new patients despite the law.
"Pre-marital screening is a requirement to get married, but it is not fully enforced. We're still getting new patients from couples who are just married," she said, adding that most of the new patients were from the Northern Emirates and expatriates. Although the number of new patients has fallen over the years, doctors regard the number as still too high for comfort, saying not enough marriages between thalassaemia carriers have been prevented.
Saeed Jafar Al Awadi, thalassaemia patient and board member of the Emirates Thalassaemia Society, told Gulf News that he discovered couples in the UAE were issued fitness to marry certificates although they have not been screened for the genetic disease. He recently came back from a nation-wide tour of thalassaemia facilities.
"Clinics are not doing screening for thalassaemia, only for HIV and other diseases, like before. They will only do it if the people ask for it. But the problem is, people have to know about the disease and risk in order to ask for the test," he said.
He added that patchy implementation of the screening law also occurred in Dubai, based on his brother's recent experience. "My brother knows he has thalassaemia so his wife has to be tested. But the hospital only did the test after they were asked," he said.
Dr Maisam Lateef, specialist senior registrar at the centre, told Gulf News that the priority for the UAE now was to implement a preventive programme nationwide.
Testing for hereditary illnesses 'by August'
The Ministry of Health, which is responsible for the pre-marital screening programme, admitted that they have not been able to implement the pre-marital screening requirement as they had to complete the preparation process.
Dr Ameen Al Amiri, Assistant undersecretary for blood transfusion and research services and chairman of the marital screening programme committee, told Gulf News that they could not implement the law, announced last year, as they had to complete a study on the logistics and prevalence of the disease. There are a total of 582 registered thalassaemia patients in the UAE.
"It takes a lot of work and preparation for a nation-wide programme. It's not as if you can announce something today and expect it to take hold the next day," he said.
He said so far the committee has implemented two categories of the five-category pre-marital screening guidelines, which are testing for viral infections HIV and hepatitis and blood group.
He added that the committee would implement the hereditary disease screening requirement, which is Category Three, hopefully by August.
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