Raising public awareness of thalassaemia

WE refer to the article “Malaysian earns medical physics scholarship” (The Star, May 2).

Congratulations to Umi Nabilah Ismail for securing the prestigious “Early Career Medical Physicists Scholarship Award”, which enabled her to receive a scholarship and mentoring opportunities.

As researchers in the field of thalassaemia, we are delighted to know that she has chosen to study this subject. As part of her PhD thesis, she will develop a biomarker that can be used to assess the efficacy of treatment in beta thalassaemia patients.

Even though thalassaemia is one of the commonest forms of inherited blood disorders in Malaysia, it is severely underrated in our country.

In an article by Ngim et al., published in the journal Prenatal Diagnosis (2015), it was reported that 6.8% of Malaysians were carriers of thalassaemia. In other words, one out of every 15 people in Malaysia is a thalassaemia carrier. These carriers are mostly asymptomatic and are unaware of their condition.

To put it in another perspective, many of us could be carriers but are unaware of our condition. Therefore, it is important for the general public to have a thalassaemia screening test to determine their status and to prevent the risk of having children with the illness.

If parents are both carriers of thalassaemia, there is a 25% probability of their children having thalassemia major and 50% to be carriers like themselves.

Children with thalassaemia major will require lifelong regular blood transfusion to treat the illness.

During the launching ceremony of the “NowyouSEEme” thalassaemia awareness campaign on Jan 27 this year, the Health Minister revealed that as of Nov 28,2020, a total of 8,681 patients survived the condition and had received treatment while 130 others who received stem cell therapy had recovered. The government is spending a huge amount on each patient’s medical cost, which could amount to at least RM3mil throughout a life span of 30 years.

The number of new cases is also increasing. The Malaysia Thalassaemia registry estimates that between 150 and 300 babies are born every year with severe thalassaemia.

International Thalassaemia Day (ITD), which is celebrated annually on May 8, provides an opportunity to remember patients who lost their lives to the disease, their parents and family who fought selflessly for a better life for them despite the burden of their disease.

It is also an opportunity to unite the forces fighting for the rights of surviving patients for a better future, and honour the dedicated scientists who are striving to ensure an improved quality of life for people with thalassaemia, too.

ITD also appreciates and acknowledges the countless blood donors who give these patients the “gift” of life. It is therefore apt that the theme for this year’s International Thalassaemia Day is “Addressing Health Inequalities Across the Global Thalassaemia Community”.

More awareness of the burden of this disease is needed, and this can be made possible with the involvement of health professionals, community, government and also the media.

We would like to thank The Star for highlighting Umi Nabilah’s success story, as it has helped to increase awareness of the disease and also highlight the need to provide a better future for patients and their families.

Happy International Thalassaemia Day!

ASSYUHADA MAT GANI and PROFESSOR ZILFALIL ALWI

Global Globin Network (GGN) and Malaysian node of the Human Variome Project (MyHVP)