Review of Rare Disease Fund and Legislation to Support Citizen Patients Requiring Expensive Drug Treatments

Mr Christopher de Souza asked 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.

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 three-for-one Government matching and a tax deduction of 2.5 times the qualifying donation amount.

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, the Ministry of Health (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.