A milestone moment in the fight against Thalassaemia

A highly significant and reaffirming goal in the field of thalassaemia management has been reached by the Dubai Health Authority (DHA) this year. Earlier in the year, the Thalassaemia Centre said that it was working towards a zero mortality rate. Yesterday, DHA announced the milestone moment of having arrived there — a triumph that has been the result of the unflagging efforts of the government to tackle this issue on multiple platforms — extensive medical and educational awareness campaigns, improving the quality of life of thalassaemia patients and the pivotal premarital screening law introduced in the UAE in 2006 that has significantly helped in bringing down the mortality rate of this debilitating genetic affliction.

In 2013, eight out of 438 patients (on regular blood transfusion) died from thalassaemia; in 2014, six of 447 patients died; and in 2015, there were three mortalities from 436 patients. In 2016 and 2017, only one patient died each year out of around 425 patients.

According to thalassaemia statistics from 2015, the average carrier rate in Dubai of the recessive disease gene was estimated to be 4.5 per cent of the population. Also, the condition affects about 8.5 per cent of the local population, which is one of the highest rates of incidence globally.

These kind of numbers call for a vigorous strategy to combat the problem and Dubai, and the UAE, have repeatedly risen to the challenge through farsightedness and on-the-ground performance. For example, the Thalassaemia Centre set up in Dubai in 1989, was the first such facility of its kind in the Middle East. From early diagnosis of the condition, to educating parents on how to attend to their children with the condition and addressing the reasons behind the mortality rate — as well as inviting schools, universities to its premises for a debriefing — the Centre’s efforts have played a tremendous role in scripting the current success story. By making the younger generation cognisant of their choices and responsibilities regarding marital pre-screening for thalassaemia gene, the authorities have placed preemptive action at the forefront of their campaign.

This preemptive action is equally applicable to couples wishing to get married because the final reality of thalassaemia is that its origins lie in the choices they make — whether it is to opt for an early, as opposed to a last-minute, pre-marital screening and if tested positive for the carrier gene, it is incumbent on them to make the medically ethical choice.

These are critical support systems to help keep this success story on track.