‘We must do more to stop suffering’

Specialist says that just one baby born with thalassaemia is unacceptable in the UAE.

ABU DHABI // A lack of awareness means that more babies will be born with thalassaemia, despite the mandatory premarital blood tests for couples.

Dr Essam Dohair, specialist haematologist and thalassaemia centre coordinator at Dubai Health Authority, said that the disease was “one of the major problems in the UAE”.

While the exact figures of the number of newborns suffering from thalassaemia have not been released, Dr Dohair said that even one baby born with the disease was “unacceptable”.

He believed that the mandatory thalassaemia test – both Emirati and expatriate couples must undertake it before they can obtain a marriage licence – should be carried out much earlier than a few days before the wedding.

“According to the law, you must do the test – but it doesn’t prevent you from getting married,” he said.

If the couple are both found to be carriers, they must seek counselling. Despite these warnings, almost all couples go on to get married, said Dr Dohair.

By then, however, “the counselling is too late”, he said. “The couple have already fallen in love with each other, planned their life together and have invited the guests.

“This is the problem we are facing with premarital screening. We want it to be done earlier, before they get involved, because by the time the counselling is done, they insist to proceeding with the marriage.”

He thought the blood tests should instead be conducted in secondary school.

Saeed Al Awadhi, a member of the board of directors of the Thalassaemia International Federation, said the premarital blood tests were viewed by couples as a routine procedure.

“They are like printing out the wedding invitations. It’s a routine. It doesn’t influence the couple’s decision to get married in any way,” Dr Al Awadhi said.

A thalassaemia patient himself, the 38-year-old said having the disease entails a lifetime of suffering that couples must not take for granted.

Dr Dohair said: “Thalassaemia patients need blood transfusions every three weeks for the rest of their lives and daily medication to get rid of excess iron.”

The current awareness programmes were clearly not effective, he said, whereas in other countries they had proved a success. “Cyprus, Spain and Sardinia all did awareness programmes in 1992, and within two years from 1994 until now, there are no new cases,” he said. “In the UAE we started in 1998 and we still have new cases born.”

Dubai, however, has seen reductions in prevalence of the disease, said Dr Dohair, as in the past three or four years there have been no new cases among Emiratis.

“Now we are reaching out to the other emirates but we did not reach what we are dreaming to get – zero new cases born.”

He said that the UAE has the best governmental and social support in the world and the region for thalassaemia patients, with studies showing that those with the disease are rated to be the “happiest in the world”.

Awareness of thalassaemia was still only sporadic, being “done on a certain days, then forgotten”.

“We need legalisation, the media and more education surrounding the disease,” he said, particularly as the country had one of the highest rates in the world.

The high rates, Mr Al Awadhi said, were not necessarily because of intermarriage but because “we have many carriers”.

He said intermarriage contributed to only 50 per cent of cases.