KUALA LUMPUR, July 10 – Thalassaemia patients in Malaysia are now expected to reach their sixties due to improved treatment, compared to the previous norm of dying before turning 20.
Health Minister Dzulkefly Ahmad said, however, that this has also put a heavier burden on health services.
“A total of RM3 million is needed to treat one major thalassaemia patient who will be able to live up to age 30 years, three decades at least,” Dzulkefly said in a speech at the launch of the Malaysian Thalassaemia Report 2018.
The Malaysian Thalassaemia Registry is the first comprehensive report in the country on the genetic blood disorder, where the sufferer lacks functioning red blood cells.
Dzulkefly said in a press conference after the launch of the registry that there are even five cases of thalassaemia patients aged 86 to 90.
The health minister said the provision of safe and adequate blood for patients was standard practice, including new technology to ensure pathogen-free red cell transfusions.
He added that the availability of oral iron chelators – which prevent potentially fatal iron overload in thalassaemia patients – has changed the landscape of iron chelation technique worldwide, as parenteral use of iron chelation was now the exception rather than the rule.
“Compliance has now improved with oral iron chelators and adherence to personalised chelation management made simpler with the oral iron chelators. This has contributed enormously to the reduced morbidity and mortality seen in our patients,” said Dzulkefly.
According to the health minister, the number of thalassaemia patients increased to 8,042 as of last December from 2,500 in 2004, before the Health Ministry started the National Thalassaemia Prevention and Control Programme in 2005 to tackle the genetic blood condition.
Out of the over 8,000 thalassaemia patients, 5,448 require regular blood transfusions.
Dzulkefly attributed the rise in the number of thalassaemia patients to improved diagnostic capabilities and reporting by health care providers.
He estimated that 200 new thalassaemia patients are diagnosed every year, while 6.5 per cent, or 31,340, of Form Four students in Malaysia screened last year were confirmed as thalassaemia carriers.
The health minister said clinical success in thalassaemia has given people affected with the disease a false sense of security, noting a common perception among at-risk couples that having a thalassaemia-affected baby was not a problem anymore due to the availability of safe blood transfusions and iron chelation medicine.
“However, what our population fails to comprehend fully is the cumulative burden of thalassaemia to the whole health care service sector, the economic, financial impact,” he said.
“No country could afford to sustain a national programme if the numbers of affected new babies are not controlled to a negligible number as it incurs more costs to the health care sector. So, towards this end, the preventive arm of the National Programme will be given even more prominence in the years ahead.”
In summary, despite the advancement of treatment in improving overall care and quality of life for patients, thalassaemia major still leads to serious medical, social, and economic problems for patients and their families.
Thus, proactive screening remains the long-term solution in the management of the disease because it not only overcomes the considerable financial burden imposed on the public health system from an increasing patient pool, but more importantly, because it is a preventable genetic disease.
Hence, don’t risk passing the gene to your children and get screened for thalassaemia instead!
Health Minister Dzulkefly Ahmad’s speech during Thalassaemia Day 2019 in conjunction with the 2nd ASEAN Thalassaemia Forum on 4 May 2019.
Please consult your physician for personalised medical advice. Always seek the advice of a physician or other qualified health care provider with any questions regarding a medical condition.