Lee Yee Seng had a reason to set up the Malaysia Lysosomal Diseases Association (MLDA) – his two daughters have been diagnosed with Pompe Disease, a genetic condition.
Lee, a power electrical engineer who lives with his family in Seremban, formed the NGO with the aim to advocate for a sustainable healthcare system, especially for the rare disease community.
In the 2018 budget, the government had allocated RM10 million to the rare disease community for them to undergo lifesaving treatments. This had made a huge impact as more than 14 individuals with rare diseases will now be able to gain access towards Enzyme Replacement Therapy (ERT). ERT is a lifetime medical treatment where artificial enzymes are intravenously inserted into the body of individuals born lacking that particular enzyme.
Apart from that, an alliance known as Rare Diseases Foundation Alliance Malaysia which was co-founded by MLDA, Malaysia Rare Diseases Society (MRDS) and Malaysia Metabolic Society (MMS) acts as a middle-man for the patient group and the government.
“By having these initiatives, we hope that the government will become more aware on the financial challenges faced by the rare disease community,” remarks Lee.
In addition to that, Lee had also travelled to numerous countries to seek support and had collaborated with various outstanding individuals in this field, including Maryze, an adult with Pompe Disease from the Netherlands and Takeyuki Akiyama, the president of MPS Society Japan with the intention to be informed on the latest developments in the Lysosomal field and create a global network of stakeholders.
Lee established MLDA in April 2011 with the goal to create a sustainable healthcare and support system for the rare disease community whose lives are held by a shoestring. He aims to have the Orphan Drug Act be enacted in Malaysia to ensure that there is a sustainability plan in the long run as the number of individuals born with rare disease is increasing yearly and so is the cost of the treatments.
Lee urged the public at large to help spread the awareness creation process in the hope that it would someday draw the attention of key stakeholders like policy makers.