Kota Kinabalu: The State Government, in collaboration with the Federal Ministry of Health, must consider to bring in advanced treatment technology to Sabah to treat the thousands thalassaemia patients, due to their rising number and high burden on their families.
Limbahau Assemblyman Datuk Juil Nuatim said there were almost 2,000 thalassaemia cases in Sabah in 2023 which was the highest in Malaysia. Many come from low-income families or B40 group.
He said the carrier rate in the State is also alarmingly high at 23pc, compared to the national average of 6.8pc.
“I welcome the State Government’s commitment to help children with special needs such as autism, through the establishment of the Sabah Autism Centre in collaboration with Universiti Malaysia Sabah as stated in paragraph 45 under the theme ‘Supporting Inclusive Development for the Wellbeing of the People’.
“I would like to include the issue of thalassaemia — a genetic blood disorder that affects thousands across Sabah, and an illness that touches the hearts and consciences of many parents and caregivers who struggle daily with the burdens of the disease.
“Thalassaemia patients rely on blood transfusions every two to four weeks just to survive. Yet effective treatments, such as gene therapy, is only available overseas and come at a high cost — often far beyond the means of the average Malaysian family,” he said.
“My own child who is a long-time Thalassemia patient for 25 years, underwent gene therapy treatment in China in Dec, 2024.
“As a result, my child had since eliminated the need to undergo regular blood transfusions after more than two decades.
“My child’s haemoglobin levels have remained above 13 for the past four months without a single transfusion. This is a life-changing breakthrough and to best of my knowledge, my child is the first Thalassemia patients in Malaysia to achieve success through gene therapy treatment,” Juil said.
He thanked Dr Lily Wong of Queen Elizabeth Hospital, who provided tremendous support, and to Dr Lim Teck Onn of a NGO in Kuala Lumpur, who played a key role in securing sponsorship for the treatment.
He also thanked President of Sabah Thalassaemia Association, Francis Mujim, for his unwavering support.
“This (gene therapy) technology must be brought to Sabah. It is time we stop making our poorest families suffer in silence, searching for hope across the sea.”