OKU Sentral urges Health Ministry to set up rare disease policy


KUALA LUMPUR: OKU Sentral president Senator Datuk Ras Adiba Radzi has called on the Health Ministry to establish a Rare Disease Policy to safeguard the welfare of those suffering from rare illnesses.

She said this included government support funds, genome sequencing research, the number of geneticists and the provision of treatment facilities in hospitals or specialist clinics.

"In the meantime, a Genomics Medicine Service (GMS) that can integrate genomic technology, including whole genome sequencing into clinical care should be established.

"We must lead the world in the use of data and technology to prevent disease, not just treat it. This has been done successfully by the United Kingdom," she said when paying a courtesy call on Health Minister Dr Zaliha Mustafa on Tuesday (Jan 17).

She also said the number of Community Mental Health (Mentari) centres should be increased by at least one in each district to overcome mental health problems.

"Additional allocations should also be given to improve the current facilities of Mentari centres, in addition to re-examining the previous proposal regarding the establishment of a Mental Health Institute," she said.

Meanwhile, on the healthcare white paper expected to be tabled in Parliament in the middle of this year, Ras Adiba requested for care and health reform for the disabled to be included as a key focus.

This includes re-examining the guidelines for health examination charges for verifying disabilities so that the RM100 charge under the Fees (Medical) Order 1982 is abolished, which would further encourage disabled individuals to be legally registered with the Social Welfare Department.

Among other recommendations are to expand and improve reproductive health services for people with disabilities, as well as to provide more medical practitioners and health workers skilled in handling disabled patients. – Bernama

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