Health Minister says nationwide screening found 57,910 carriers among 2.12 million students tested.

PETALING JAYA: More than 2.12 million Form Four students have undergone thalassaemia screening since 2016, with 57,910 confirmed as carriers, the Dewan Rakyat was told today.

Health Minister Datuk Seri Dr Dzulkefly Ahmad said the targeted school-based programme has been implemented nationwide to detect carrier status early and enable preventive intervention.

He said 2,461,594 students were offered screening, of whom 2,122,446 completed the test, resulting in a carrier prevalence of 59.1 per 1,000 students screened.

Dzulkefly added that the states with the highest carrier rates are Kedah (10.3%), Pahang (9.07%), Terengganu (8.21%) and Kelantan (7.5%).

Despite the prevention push, Malaysia has recorded 9,554 thalassaemia patients, with the lifetime treatment cost for a transfusion-dependent patient estimated at US$606,665 (nearly RM3 million) from childhood to age 40.

The minister said the figure is based on the Annual Report of the Malaysia Thalassaemia Registry 2023, published in 2025, noting healthcare expenses account for 92.5% of the overall burden while 7.5% is borne directly by patients and families.

Dzulkefly was responding to a question from Datuk Dr Ahmad Yunus Hairi (Kuala Langat-PN), who sought the latest patient numbers, lifetime treatment costs and whether Malaysia plans to develop gene therapy.

Explaining disease classification, Dzulkefly said patients are grouped based on transfusion needs.

“Patients are categorised according to transfusion requirements, namely transfusion-dependent thalassaemia (TDT) and non-transfusion-dependent thalassaemia (NTDT).”

“TDT patients, most of whom have thalassaemia major, require regular lifelong blood transfusions to maintain adequate haemoglobin levels and prevent serious complications.”

He said repeated transfusions can lead to iron overload requiring long-term management.

“Repeated transfusions can cause excessive iron accumulation, therefore iron chelation treatment and continuous monitoring are required.”

On gene therapy, Dzulkefly said the treatment shows promise but faces implementation hurdles.

“Although this therapy has the potential to be curative, its widespread availability is still limited and implementation is challenging as it requires specialised gene therapy facilities, multidisciplinary expertise, high-standard laboratory infrastructure and a sustainable health financing mechanism.”

Separately, he said hematopoietic stem cell transplantation (HSCT) remains a curative option in Malaysia.

“HSCT services are currently offered at two government facilities, namely Hospital Tunku Azizah and Hospital Wanita dan Kanak-Kanak Sabah.”

Dzulkefly said 212 patients have been cured through HSCT since 2007, with treatment costs ranging between RM100,000 and RM120,000 per patient.

 The Sun Malaysia