KUALA LUMPUR, Dec 31 — The Ministry of Health (MOH) has called for donations for patients with rare diseases to cover its high cost of treatment, the health minister said.
According to Dr Adham Baba, the cost of treating rare diseases is high and for the year 2020, MOH allocated a total of RM16.5 million to treat rare diseases.
“However, as the cost of this treatment is very expensive, the ministry welcomes fund donations from individuals, corporate companies, associations to donate as part of their corporate social responsibility, to ensure the continuity of treatment until the end of the patient’s life,” Dr Adham said in his written Dewan Rakyat reply on December 3.
The health minister was replying to Rasah MP Cha Kee Chin, who asked the former on the latest status of the “National Framework for Rare Diseases” that was previously launched, including the interpretation of the category of rare diseases, medical methods, and approach in getting adequate funding.
Dr Adham said that MOH has approved the National Framework of Rare Diseases to integrate the management of rare diseases in Malaysia, involving advocacy and health education to the public, patient screening and diagnosis, clinical management, referral system, data collection and research related to rate diseases.
“Next, an engagement with all stakeholders will be held in the near future,” the health minister said.
MOH has approved the definition of rare diseases in Malaysia as a life threatening and/ or a chronically debilitating rate condition, as listed in the list of rare diseases.
“MOH is currently in the process of refining the list of rare diseases in Malaysia,” said Dr Adham.
According to rarediseasemalaysia.com, among the top five rare diseases in Malaysia include Marfan syndrome; Prader Willi syndrome; Osteogenesis imperfecta; Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes (MELAS); and mucopolysaccharidosis type (MPS) type two.
Dr Adham described how certain rare diseases can only be given supportive treatment because there is no specific treatment for those diseases. Meanwhile, some rare diseases also require special milk and specific medications like enzyme replacement therapy.
MOH also provides rehabilitation and support like occupational therapy and physiotherapy to patients with rare diseases who require such treatment.