Earlier pre-marital thalassaemia testing needed

Dubai: Doctors and activists working with thalassaemia patients called for earlier screening for the genetic blood disorder, saying pre-marital screening has failed to prevent the birth of new patients.

Thalassaemia, characterised by the breakdown of oxygen-rich red blood cells, affects about one in 15 UAE nationals. When carriers marry each other, they have a 25 per cent chance of producing a thalassaemia-major patient, who requires frequent blood transfusions to survive.

Dr Fatima Sajwani, a haematologist at Al Qasimi Hospital, told the press after the launch of World Thalassaemia Day commemorations that earlier screening would help prevent marriage between carriers.

Start from school

"The country has already established the compulsory pre-marital screening for [blood] disorders before marriage but we were thinking that it should be done even before thinking of marriage," she said, adding it should take place while individuals were still in school.

She said requiring earlier screening would solve the problem of having to cancel weddings, which many families were loath to do.

In the UAE, marriages are not only a union between two people, but also between their families.

Dr Essam Dohair, haemo-globinopathy specialist at Dubai Thalassaemia Centre, said many couples were going ahead with their wedding plans despite discovering they were thalassaemia carriers.

"We found most of the couples coming just a few days before their wedding day. During this time, whenever you try to explain to them - there is already a sort of bond between this couple. To break this bond, in our culture, it will not be accepted easily," he said.

Both health officials said they were still receiving babies born with thalassaemia, adding they did not notice a drop of new cases since pre-marital genetic testing became a requirement in the UAE in 2006.

No official statistics for thalassaemia incidence in the UAE exists, with each authority - Ministry of Health, Dubai Health Authority (DHA) and Health Authority of Abu Dhabi (Haad) - reporting its own figures.

The ministry is treating more than 100 thalassaemia major patients, with at least three new cases so far this year, while the Dubai Thalassaemia Centre under DHA is treating 720 patients, and Haad about 100 patients.

Despite the ineffectiveness of the pre-marital screening programme, health officials said they could not legally bar thalassaemia carriers from marrying each other, due to cultural and religious concerns. Therapeutic abortion of foetuses with the disease is also unlikely to become legal for the same reasons.

"It is very difficult in our country and in our religion. You will have to consider things other than the health or the science. We have to put in mind the culture, we have to put in mind the religion," Dr Fatima said.

Abortion is illegal in Islam, except to save the life of the mother. However, some scholars have argued abortion of severely diseased foetuses was permissible before 120 days, which is when the soul takes residence.

Health officials at the press conference also called for more blood donations, saying the demand was higher than supply.

Dubai An Emirati couple is still trying to decide whether they should marry, if their union meant their child would have thalassaemia major as well as another genetic blood disorder.

Dr Fatima Sajwani, a haematologist at Al Qasimi Hospital, told Gulf News the couple found out they have the genes for thalassaemia and sickle cell anaemia.

"I advised them not to marry because I have a case of a diseased patient who is blood transfusion-dependent and he has the same combination of blood disorders," she said. "They have not married yet and they are still discussing it with their families so hopefully [they will choose not to]."

If they decided against marrying, the couple would be joining a small but growing group of Emiratis who have chosen not to go through marriage due to genetic reasons.

Dr David Spence, chief of medicine at Shaikh Khalifa Medical City, had told Gulf News that slowly, more and more "courageous" couples prioritised the health of future children. "Some of them have seen the effects of the disorder in their own family."

- N.M.