THE Malaysian Alliance of Rare Diseases Foundation takes note of the government’s effort to provide better healthcare coverage for the B40 group through a social health insurance scheme. Although the details of this scheme are yet to be made public, such good intention is to be applauded. While each individual rare disease is uncommon, collectively there are over 6,000 conditions affecting at least 5% of the population.
Some rare diseases require expensive but life-saving therapies (also known as orphan drugs) that are not currently readily available to the patients because of the high costs. Such patients on the long waiting list face health deterioration and death because of delay in treatment.
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