Raising public awareness on genetic blood disorder

  • Community
  • Friday, 07 Oct 2005

THE Health Ministry will launch a series of campaigns on Thalassaemia to raise public awareness on the disease following an allocation by the Cabinet.  

Health Minister Datuk Dr Chua Soi Lek said RM19.9mil would be given out one-off to buy medical equipment while RM29.6mil would be allocated annually to provide treatment, health education and the setting up of a national Thalassaemia registry. 

Speaking at a press conference at his ministry in Putrajaya on Monday, Dr Chua said Thalassaemia, a genetic disorder that disrupts red blood cell formation, currently affected 3% to 5% of the country’s population. 

The red blood cells of a patient are easily destroyed and have a short lifespan, resulting in anaemia. 

“Patients have to undergo blood transfusion three to five times a week. 

“Patients who have blood transfusion will have iron overload in their bodies and will have to be given chelating agent to remove the excess iron,” he said.  

The dosage of the medicine will vary from one person to another based on their body weight and age.  

Dr Chua said the ministry would focus on educating the public on the disease to ensure that carriers would know about their status before they got married.  

A carrier who married a non-carrier will produce children with a 50% chance of becoming carriers while the marriage of two carriers will have a 25% chance of producing a Thalassaemia child.  

He said about 200 to 350 new Thalassaemia patients required treatment each year. 

“We hope to reduce the number of such patients through the screening and registration of patients,” he added.  

The ministry's Family Health Development director Datuk Dr Narimah Awin said it would discuss with the Islamic Development Department (Jakim) and the Interfaith Council to make the screening a mandatory requirement for couples who were getting married.  

“We cannot make it compulsory because that would be an infringement of human rights but we will put it in a mechanism and encourage people to undergo the screening,” she said.  

She said the ministry would also work in partnership with the Education Ministry to carry out pilot projects to screen school children in schools in Sabah, Malacca and Penang the latest by next year.  

“I don’t want to screen children without the parents’ knowledge about the disease. 

“You must tell them why they are screened and we will have to get consent for the screening. When they get the results, they will also have to undergo counselling,” she said.  

She said the ministry would provide free screening for couples who wished to take the test and use the electronic and print media as well as the billboards, public forum and posters to educate the public on the disease.  

Currently, she said, there were 2,400 to 2,600 patients who were undergoing blood transfusion each year.  

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