World Thalassaemia Day 2008: Need to screen carriers

NST: KUALA LUMPUR: There is no national screening programme to identify thalassaemia carriers.
Thalassaemia Society of University Hospital president Professor Dr Chan Lee Lee says unless a programme is put in place, it would be difficult to control the number of children born with thalassaemia major.
But, she says, at least awareness of the disease is much higher now than it was five years ago.
"The government has also taken the initiative to develop a thalassaemia group last year, and they are now drafting clinical practice guidelines for the management of thalassaemia patients," Dr Chan said in conjunction with World Thalassaemia Day. It will be marked at the national level from May 26-29 at Berjaya Times Square.
She said the treatment of thalassaemia patients has improved, with the government making available one of the essential drugs, Desferal, for free since 2006.
About 3,000 thalassaemia major patients now get free treatment at government hospitals.
Dr Chan said with proper treatment, a thalassaemia patient can live for many years, but in Malaysia the oldest patient is 35 years old. Sabah has the most thalassaemia patients, with Selangor and the Federal Territory believed to be second and third.
Dr Chan's advice to those starting a family is - test for thalassaemia. A simple blood test is all that it takes. She warned that a thalassaemia major child without treatment could die before two years of age.
Dr Chan also called on Malaysians not to stigmatise thalassaemia patients - it is a hereditary problem and not contagious.