Increased Allocation For Rare Diseases Expected To Assist Haemophilia Treatment

KUALA LUMPUR, Nov 5 (Bernama) -- The increased RM25 million allocation in the 2025 Budget for rare disease treatment costs is expected to improve haemophilia care, said Bentong MP Young Syefura Othman.

Young Syefura, who serves on the Parliamentary Special Select Committee (PSSC) on Health, expressed hope that the Ministry of Health (MOH) would adopt cost-effective treatment options to support patients.

She said haemophilia affects roughly one in every 30,000 Malaysians, making affordable access to treatment critical for those affected. 

“This allocation can significantly help rare disease communities by reducing the high costs of treatment that many families face. We hope this allocation reaches those in need and be distributed fairly according to each patient’s requirements,” she told Bernama when met at the Parliament Building here recently

She added that her team plans to hold more community events with the Haemophilia Society of Malaysia (HSM) to raise public awareness of early symptoms in infants and the challenges faced by patients and their families.

Haemophilia, an inherited disorder causing prolonged bleeding due to a lack of blood-clotting components, affects about 1,200 Malaysians currently receiving treatment.

HSM vice-president Muhd Shakir Abdul Aziz, who also has haemophilia, suggested that MoH consider Emicizumab as an option, especially for children under eight and those with inhibitor complications. This treatment requires only a single injection every three weeks, which could help reduce MoH costs significantly.

“For children, the treatment cost is much lower as only a small dose is needed, based on body weight. Additionally, it’s less painful as it’s injected under the skin rather than into a vein,” he said.

Currently, patients rely on plasma-based treatment (factor concentrate), which is more costly and requires injections three times a week.

Shakir expressed hope that MOH would engage HSM for input and consider patient-related outcomes when making decisions on treatment options.

-- BERNAMA