According to a story from The Star Online, the government of Malaysia has allotted RM50 million of its 2019 budget for the treatment of numerous rare diseases, stunted growth, hepatitis C, primary healthcare enhancement, and dialysis. There has also been ongoing pressure on the Health Ministry to proceed in funding treatment for spinal muscular atrophy.
Funding Rare Disease Treatments in Malaysia
However, this budget will still only be a fraction of what will be needed, and many rare disease patients advocates and NGOs are concerned that the funding will be spread thin since it is dedicated to covering a number of different health challenges. In addition, there is a lack of clarity about how the funding will be broken down and to what extent it will actually reach rare disease patients.
While it is difficult to say that any government is doing a particularly good job at tackling rare diseases, Malaysia still has some catching up to do in addressing the problem when compared to some more developed countries. The government has yet to announce a singular definition for rare diseases under which it can be addressed in law. Additionally, there are no official registry for rare diseases, which is essential for gathering data, and makes tracking of the prevalence of these non-communicable diseases more difficult.
The majority of rare diseases, about 80 percent, have a genetic basis. They also tend to affect kids disproportionately, and 30 percent of patients die before reaching their fifth year of life. To stay alive, long term care is often a requirement.
Different Country, Same Problems
Rare disease patients in Malaysia face many of the same struggles that rare patients in other parts of the world also face, such as difficulty and lengthy diagnosis, challenges with access to treatment, and low awareness about rare diseases from lawmakers and the general public. Many treatments for rare diseases have yet to receive any public funding (with the exception of lysosomal storage diseases).
Due to vagueness about funding allocation, it is unclear if this year will see a funding increase or decrease for rare diseases; the 2018 budget included RM10 million for rare diseases. This has left rare disease patient advocacy groups feeling even more uncertainty than usual.
Hopefully, Malaysia will soon follow in the footsteps of many other Asian countries in developing a legal framework for orphan drugs and rare disease treatment funding in the future.
