Hajiji
KOTA KINABALU: Sabah records the highest number of thalassaemia patients in Malaysia, said Chief Minister Datuk Seri Panglima Hajiji Noor.
Based on 2019 statistics, he said Sabah registered 1,829 thalassaemia patients out of the total of 8,178 in Malaysia.
Thalassaemia is an inherited blood disorder caused when the body does not make enough haemoglobin, an important part of red blood cells.
He said thalassaemia could be inherited from either one or both parents who are carrier of the disorder.
“There are no specific treatment to date because there is no medicine that could cure thalassaemia patients yet.
“Patients are forced to rely on lifetime blood transfusions and the cost of treatment is extremely high, up to RM3 million per patient from when the disorder is detected as early as one year old till the expected life expectancy of 30 years old,” he said when officiating at the closing ceremony of the Sabah state-level World Thalassaemia Day celebration 2021 that was held virtually via Facebook live on Thursday.
Nevertheless, Hajiji assured that the State Government would ensure the needs of thalassaemia patients in the state were provided for by the relevant departments, particularly the Sabah Health Department, to reduce the number of patients and alleviate their cost of treatment.
To this end, he said the Blood Transfusion Unit of Queen Elizabeth Hospital 2 (QEH2) had been collaborating with the Sabah Thalassaemia Society and other non-governmental organizations (NGOs) in organizing blood donation campaigns.
He said patients were also provided with free treatment, supply of safe blood, bone marrow transplant and stem cell therapy treatment.
In addition, he said the Sabah Welfare Department provided financial aid to eligible patients.
“As a leader in Sabah, I will do my level best to support any efforts to assist thalassaemia patients in the state.”
Hajiji also urged thalassaemia patients and their families to become agents of change by educating their family members on the importance of screening.
“This is in line with the State Government’s hope to achieve the Sabah Thalassaemia Society’s goal to break the chain of thalassaemia major in the state.”
He further called on the people to undergo thalassaemia screening, which was provided free of charge at all government hospitals.
Meanwhile, Sabah Health director Dr Rose Nani Mudin said Malaysia recorded 8,884 thalassaemia patients last year, 1,910 of whom were in Sabah, the highest in the country.
Of the 1,910 thalassaemia patients, she said 1,365 or 71 per cent of them required blood transfusion while 545 or 29 per cent were non-transfusion dependent.
She added that treatments for thalassaemia patients involved blood transfusion every month and iron chelation therapy drugs.
“The estimated cost of a genetic thalassaemic patient is RM3 million from young to adulthood.”
Dr Rose said the national Thalassaemic Control and Prevention Programme had been implemented since 2004, which included early detection through screening, counselling and health education to the public.
She said the thalassaemic screening programme for Form Four students had been carried out since 2016.
“In Sabah, a total of 141,551 Form Four students had been screened since 2016 and five per cent of them have been detected as thalassaemia carriers.
“The screening aims to identify thalassaemic carriers and prevent marriage between carriers.”
The Sabah state-level World Thalassaemia Day celebration 2021 was sponsored by Repsol Oil & Gas Malaysia Limited.
Repsol Oil & Gas Malaysia Limited senior stakeholder relations manager, Ahmad Fakhrurrazi Bin Arshad, said the company had sponsored eight programmes that involved awareness campaigns and activities for thalassaemia patients.
In January last year, he said Repsol had sponsored six thalassaemia patients for a short bakery course, as well as provided each of them with a commercial oven and raw ingredients for them to kick start running their business from home.
He said the participants were monitored to assess the effectiveness of the programme’s objective, which was to earn sustainable income.
He said one of the programmes of the Thalassaemia Day celebration this year was cakes and buns making competition specifically for the participants to conclude the human resource development programme.
“Today is the eighth year Repsol collaborated with the Sabah Thalassaemia Society in their awareness campaign on the disorder.
“Our involvement and sponsorship in their campaigns started when we found that Sabah records the highest number of thalassaemia major patients in Malaysia.”
Ahmad said Repsol had contributed RM360,000 to thalassaemia awareness campaigns in conjunction with the World Thalassaemia Day celebration in Sabah since 2013, with the aim to provide a platform to disseminate information and create public awareness on the disorder, and to inform thalassaemia patients on the new approaches and discoveries on treatment.
He added that the online World Thalassaemia Day celebration would create awareness among the public on a larger scale.
“It is hoped that the social media approach will enable the State Government to achieve the goal of zero thalassaemia major birth by 2030.”