Survey shows mixed response to proposal
Sarawak Tribune - Wednesday, 4 December, 2002
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KUCHING - A random survey conducted by Tribune yesterday revealed a mixed response to Wanita Umno's plan to submit a proposal to the Islamic Council and Registrar of Marriages to make screening for thalassaemia mandatory for couple intending to get married.

The president of Sarawak Thalassaemia Society, Johari Yaman, said he agreed with the proposal.

"A couple intending to get married should have their blood tested so that they would be more prepared to face the disease in case any one of them might be a minor (carrier) of the disease," said Johari, adding that public-awareness campaign should also be carried out as statistics showed that 3 percent of the total population of Malaysia are carriers of the thalassaemia genes.

He pointed out that it would, be rather unfair for married couples to discover the health condition of their partners later in life.

Johari advised: "Those who are in love should also undergo health screening on their own free will as it is always better to know the truth earlier than later."

He related his own experience in which he has bear more than RM1,000 per month for the treat­ment of one of his children.

A Catholic priest, Reverend Father Stephen Lim of Kenyalang Trinity Parish, said the mandatory screening should be welcomed, pointing out that the proposal however should include the advantages and disadvantages.

He said: "I agree with the proposal in so far as there is a genuine case, a couple wanting to know whether they are thalassaemic carrier on not. Then they could have a choice whether to go on with their intention to avoid thalassaemic babies."

"But there is a possibility that if one of the partners is a carrier of the disease then he or she could be facing a funda­mental moral question as to what to do next, either leaving the partner or proceed with their plan? he noted, adding that this is discriminatory and on top of that shame and stigma could cause more harm than good.

According to Lim, mandatory screening should be done not to jeopardise the relationship of the couple but rather a free act and a sign of loving kindness on both side.

"After all, if both partners are carriers they still could get married because if they truly love each other, they could always go for adoption," he reasoned. Reverend Hii Kong Ching of the Trinity Methodist Church pointed out that screening could not be made compulsory, saying there was no proof that the disease was rampart in the country.

"We should also look at the basic free will of couples intending to get married. Let them decide what they want to do, either go for screening or otherwise," he said.

The honorary secretary of Sarawak Thalassaemia Society, Catherine Sia, revealed that 72 patients were registered with the society.

"There should be more public awareness about the disease. It is always better to know the truth than leaving things to fate," she advised, adding that one of her children had successfully undergone a transplant in Italy recently.

Wanita Umno Legal Affairs Bureau chairman Senator Dr Kamilia Ibrahim was reported to have said that the Bureau would first study rules governing marriages under the Svariah and Civil laws to see if the idea was feasible.

Dr Kamilia added that awareness on the disease should be taught in marriage courses and be included in the school curriculum.

"If a person is found to be positive, the couple should think carefully about marrying, especially when both partners were found to be carrying the gene," she said after giving away Hari Raya hampers and duit raya to some 120 children at the Ipoh Hospital recently.

Meanwhile, the word thalassemia is derived from two Greek words - Thalassa meaning the sea and haima meaning blood. The word originated from a common condition peculiar to the geographical area in the Mediterranean between South Europe and North Africa.

Thalassemia is a genetic blood disorder in which the body is not able to make enough normal hemoglobin and the life of red blood cells is much shorter (10 - 15 days) compared to the normal 120 days. This leads to gradual and progressive anemia that does not respond to any type of conventional treatment. The condition is diagnosed around the age of 8 to 10 months when the child looks pale, weak and lethargic.

Unattended the child will have retarded physical and mental growth. The condition is inherited if both the parents. "carry" the genes for the disorder. There are an estimated 240 million carriers of thalassemia in the world.