Last week, we received a request from Ms Rachel Siew of the Rachel Siew Suet Li Trust Fund. She suffers from a rare genetic disorder called the Morquio Syndrome and is forced to undergo a life-long treatment that costs RM1.6 million a year. Her request is straightforward: To speak with the Ministry of Health to find a way to make this treatment more financially sustainable, for her and others suffering the same disorder.
As such, we’ve managed to secure an appointment this morning with Dato’ Seri Dr. Hilmi Yahaya, the Deputy Minister of Health. He promised to look into the matter of subsidising the treatment as well as approving the generic version of the required medicine.
Despite her condition, Rachel is an incredibly bubbly and cheerful person. A law graduate from Brickfields Asia College and University of Hertfordshire, she is now working for the Make It Right Movement and receives incredible support from her colleagues, particularly Mr Brian Lariche, her boss.
Hopefully something of substance will come out of the meeting. Rest assured, our office will continue to support Rachel as much as we can.
