Advocates for Rare Disease Patients Are Calling for a Patient Registry in Malaysia

According to a story from QQ Malaysia Online, patient advocates are looking for ways to raise awareness of rare diseases in Malaysia and get help to forgotten patients that desperately need treatment. In developing nations like Malaysia, there is often very little support for rare disease; the government’s health budget is already forced to prioritize more widespread health problems that are affecting a greater number of people. In Malaysia, this often includes cancer, heart disease, and diabetes.

The decision to prioritize more widespread diseases seems logical; after all, addressing common health problems means helping more people and saving more lives. Nevertheless, the rare disease community would remain forgotten. The problem is further exacerbated by the fact that rare disease treatment is often far more expensive in comparison to more widespread illnesses. This makes budgeting to account for them less appealing and far more challenging.

Overall, the country has made significant steps to fund education and healthcare, and Malaysia has made some efforts to fund rare disease treatment, allocating RM10 million towards them; but this is a paltry amount in comparison to the great need, and only a few lucky patients will ever benefit from this money. Dr. Hishamshah Mohd Ibrahim believes that one good step would be to create a registry of rare disease patients in the country. While this may not seem like a groundbreaking change, the idea could lead to greater support.

While only one of many steps that should be taken, the registry would be necessary for accurate data on rare diseases to become available in Malaysia.


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