KOTA KINABALU, July 19 — The Sabah Thalassaemia Society (STS) has recommended that the state government enact a special act for every couple keen to get married to undergo a thalassaemia screening test.
Its president Francis Mujim said the test would enable the couple to detect at an early stage if they were carriers or sufferers of the disease.
“Currently, we cannot force couples to undergo thalassaemia screening test, like HIV screening test, for couples who want to get married,” he said after the launching of a state-level 2.0 thalassaemia awareness campaign here today.
The ceremony was opened by Sabah Minister of Health and People’s Welfare Datuk Poon Ming Fung.
Francis said there were 1,814 thalassaemia patients in Sabah as of 2018, namely, those aged between 10 to 14 years (391), followed by five to nine years (370) and 15 to 19 years (327).
(A person who has thalassaemia trait may not have any symptoms at all or may have only mild anemia, while a person with thalassaemia major may have severe symptoms and may need regular blood transfusions.)
Meanwhile, Francis said most thalassaemia major patients died when they were between 18 and 23 years old.
Therefore, he said through the 2.0 campaign for the period 2020-2023, the association would involve village heads and the Village Community Management Council (MPKK) to disseminate accurate information on the disease.
He said the effort was made to control and reduce the risk of birth with the disease for a healthier generation in the future.
Meanwhile, Stakeholder Relation Repsol Oil & Gas Malaysia Limited Senior Manager Ahmad Fakhrurrazi Arshad said Repsol through its corporate social responsibility had contributed RM330,000 for thalassaemia awareness campaign since 2014.
He said it aimed to provide a platform to convey information and awareness to the general public about thalassaemia, as well as gather thalassaemia patients to listen to new methods and discoveries of medicine, as well as ways to live life as patients with their families.
“In January this year, Repsol sponsored six thalassaemia patients in the bakery field by providing skills training for capacity building as well as supplying an oven and raw materials so that they can start a business from home,” he added. — Bernama