24 April 2023
NOTICE PAPER NO. 1863
NOTICE OF QUESTION FOR WRITTEN ANSWER
FOR THE SITTING OF PARLIAMENT ON 8 MAY 2023
Name and Constituency of Member of Parliament
Mr Christopher de Souza
MP for Holland-Bukit Timah GRC
Question No. 2911
To ask the Minister for Health how is the Ministry reviewing the Rare Disease Fund and legislation to put in place an appropriate financing scheme to support citizens with rare diseases who require expensive drug treatments.
1 Every year, a small number of patients are unfortunately afflicted with rare diseases. While treatments may be available for some rare diseases, they are often highly expensive. The Rare Disease Fund (RDF) was established in 2019 as a charity fund to provide financial support to Singapore Citizens requiring such treatments. It is managed by the RDF Committee, which comprises community representatives, and is advised by a panel of medical experts. Eligible donations to RDF attract 3 for 1 government matching and a tax deduction of 2.5 times the qualifying donation amount.
2 Given the high cost of treatments and limited funds, RDF’s support is currently focused on rare diseases that are life-threatening and treatments that are required by the patients on a lifelong basis. Nonetheless, MOH recognises that with technological advancement, more novel and expensive treatments may become suitable for rare disease patients. MOH is currently working with the RDF committee to explore the coverage of some of such treatments, where appropriate.