Materia Medica Malaysiana

Move for thalassaemia register

A National Thalassaemia Registry will be set up to keep track of Malaysians who are carriers of this blood disorder so that marriages among them can be prevented.

Health Minister Datuk Dr Chua Soi Lek said today a task force was in charge of looking into setting up the registry.

"We expect a report to be ready in two months' time and it will then be tabled to the Cabinet to be reviewed.

"Thalassaemia cases can be significantly reduced if we are able to identify the carriers and prevent one from marrying another," he said, adding that such couples have a 25 per cent chance of having a child born with this disease.

"If they insist on getting married, they have to be warned about the risk they are taking," he said.

Dr Chua said premarital screenings were necessary to reduce the number of new cases.

Those targeted for thalassaemia carrier screening include university students, couples planning to get married and pre-natal mothers.

Thalassaemia patients not only suffer the painful effects of the disease their whole lives, they also have to bear the high cost of treatment.

Dr Chua said on average, patients spend RM270 to RM1,080 per month on treatment.

"With an estimated 2,500 transfusion-dependent thalassaemic patients in Malaysia, it will cost the Health Ministry more than RM20 million a year to provide free or subsidised treatment for all of them, and the cost will recur.

"By screening the target groups, we can advise carriers not to get married to each other and lessen the chances of thalassaemic children being born," he said.

Dr Chua cited Iran's experience where proper counselling for couples, who were carriers, resulted in 90 per cent of them opting not to get married for fear of bearing thalassaemic children.

He was speaking at a Press conference after launching the First National Thalassaemia Seminar and International Thalassaemia Day at Corus Hotel.

In his speech earlier, Dr Chua said he was pleased that such an event was held to provide updates on the management of thalassaemia.

Dr Chua also called on the media to play a more active role in highlighting cases of patients seeking public donations to undergo treatment or surgery.