Rare Disease 2020 Budget Rose To RM16.5Mil, MOH Clarifies

The actual 2020 budget is RM16.5 million, not RM10 million.

KUALA LUMPUR, Dec 6 – The Ministry of Health (MOH) clarified that the 2020 budget for rare diseases had actually increased by RM500,000 to RM16.5 million.

Minister Dzulkefly Ahmad said during yesterday’s Parliament session that the total budget includes a budget allocation of RM10 million for next year, as well as a current provision under Radiotherapy and Oncology activities of RM6.5 million.

“To enable patients with rare diseases to receive treatment at the MOH facility, an allocation of RM16 million was set up in 2019 under the special provision of the Ministry of Finance (MOF) B.11,” he said.

“However, for the year 2020, a sum of RM10 million of which was previously a special provision under B.11 MOF has been placed under the existing policy provisions under B.42 MOH, including the current provision under Radiotherapy and Oncology Activities of RM6.5 million.

“Therefore, for the information of Your Honorable, the total allocation for rare diseases is RM16.5 million with an increase of RM500,000 for 2020 compared to the allocation for 2019,” Dzulkefly concluded.

He said this as a reply to Rasah MP Cha Kee Chin who questioned the reason for the reduction of the 2020 budget allocation for rare diseases to RM10 million as compared to RM16 million allocated for 2019.

“The ministry could consider increasing the allocation of at least RM16 million by 2020,” Cha suggested in his question.

Dzulkefly also added that the government has developed a National Framework for Rare Disease.

“To this end, the Ministry has developed the National Framework for Rare Disease to establish a governance committee to integrate the management of rare disease patients in Malaysia, in a comprehensive and holistic manner that includes advocacy for public health education, screening and patient diagnosis as well as strengthening prenatal diagnosis and newborn screening, clinical management, referral systems, data collection and rare disease-related research,” he said.

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