KUALA LUMPUR: People with Thalassaemia have been urged to become "agents" in educating family members on the importance of taking screening tests to ensure the next generation is protected.
Health Minister Datuk Seri Dr Adham Baba said those suffering from the medical condition should find a suitable partner in life who does not have the Thalassaemia gene to ensure the next generation does not carry the same disorder.
According to the Malaysia Thalassaemia Registry report, he said as of Nov 28, a total of 8,681 patients survived the condition and had received treatment, while 130 patients who received stem cell treatment have recovered.
"To reduce the burden of such a condition, the ministry introduced Thalassaemia screening tests for all Form Four students in 2016.
"Since 2016 to 2018, a total of 729,994 parents had consented for their children to be tested at school and 689,460 students have been screened.
"From the total, 31,716 students have been identified with the medical condition. This means 464 people from 10,000 in the Form Four group of students are suffering from Thalassaemia," he said at the 'NowyouSEEme' 2021 Thalassaemia awareness campaign launching ceremony via a virtual platform today.
Also present at the virtual launch were Deputy Education Minister I Muslimin Yahaya and Repsol Malaysia director Pablo Ortolá Martínez.
Thalassaemia is an inherited blood disorder which causes the body to have less haemoglobin than normal. Thalassaemia can cause anaemia and fatigue.
Dr Adham urged individuals who are suffering from the disorder to inculcate a high level of health awareness to be able to make an informed choice.
He said it is time to be more open about the medical condition with one's future spouse.
Meanwhile, the collaboration between Repsol Malaysia, the Health and Education ministries on the campaign is aimed at educating secondary school students on the medical condition to be better informed and to play an active role in society to manage and mitigate the disorder.
The 'NowyouSEEme' initiative gives students the opportunity to display their creativity in communicating their understanding and information about Thalassaemia on social media and through competitions organised in their respective schools.
Since 2013, said Martinez, Repsol's goal was to get the community involved in the fight to reduce Thalassaemia birth rates in Malaysia by as much as 95 per cent by the year 2038.
"With the support of both ministries on this campaign, we are able to achieve this by engaging an important group of people – the students – more effectively," he said in his speech.
It is estimated that 200 new Thalassaemia cases were detected every year and the patient requires a medical cost of at least RM3 million each for the treatment throughout a period of 30 years.