Datuk Ras Adiba Radzi Urges Ministry of Health to Implement Rare Disease Policy
By: Michelle Liew
President of the Association of Persons with Disabilities (OKU) Central Senator Datuk Ras Adiba Radzi suggested that the Ministry of Health (KKM) implement a Rare Disease Policy to safeguard the welfare and health care of the community suffering from the disease.
She said that this would include 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 Medicines Service (GMS) that can integrate genomic technology, including whole genome sequencing into clinical care, should be established.
"We should lead the world in the use of data and technology to prevent disease, not just treat it. Things like this have been done successfully by the United Kingdom," she stated during a courtesy call on Health Minister Dr Zaliha Mustafa today.
Ras Adiba also urged that Community Mental Health Centers (Mentari) be added and that there be at least one such centre in every district to overcome the increasingly worrying 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, regarding the white paper that is intended to be presented in Parliament in the middle of this year, Ras Adiba requested that the element of care and health reform for the disabled be included as the main focus.
Among other things, it includes re-examining the guidelines for health examination charges for the verification of the disability of the disabled so that the RM100 charge under the Fees (Medical) Order 1982 is abolished to encourage disabled individuals to be legally registered with the Department of Social Welfare (JKM), he said.
Some other recommendations include expanding and improving reproductive health services for people with disabilities, especially women with disabilities and providing more medical practitioners and health personnel trained in the field of disability.