Orphan Drugs Asia Live: Learning from the advanced special healthcare systems for rare disease patients in Singapore

In Orphan Drug Congress, Orphan Drugs Live by rachel

Many interesting and pressing issues were raised at the first roundtable discussion on Orphan drugs at day 1 of World Orphan Drug Congress Asia 2014. This roundtable was hosted by Patricia Ng, president of Rare Disease Society Singapore. The topic was ‘Learning from the advanced special healthcare systems for rare disease patients in Singapore’.

Patricia kicked off the discussion by highlighting that despite being an economy powerhouse in Asia alongside Japan and Korea, Singapore is in fact, way behind these countries when it comes to promoting advocacy and awareness towards orphan drugs. Singapore do have healthcare budget but we do not allocate sufficient budget allocated towards addressing issues within the rare disease community. Furthermore, the rare disease act is not correctly defined without any patient support here in Singapore. Is there a way to improve orphan drug policies in Singapore?

The main challenge in Singapore is to firstly get doctors to be part of patient support group and to be there for patients . Doctors are generally hesistant towards sharing information on rare diseases treatments. This can be attributed to the fact that there are no proper platform to educate doctors with the correct information and available treatments for rare diseases. Furthermore, orphan drugs developments are not given priority during funds allocation. Though we can get access to orphan drugs easily, who will be paying for the drugs?  Will it be the government,support groups or patients themselves? That is the question

The discussion ended with the notion that more should be done to foster cross border alliance and support towards to towards orphan drug developments and rare disease conditions here in Singapore.