Size, Annual Income and Expenditure of Rare Disease Fund

Mr Leong Mun Wai asked the Minister for Health (a) what is the current size, annual income and annual expenditure of the Rare Disease Fund (RDF); (b) whether RDF only uses its investment income to support patients who require RDF-listed medications and, if so, why; and (c) why have medications approved by the Health Sciences Authority to treat spinal muscular atrophy, such as Zolgensma and risdiplam, not been listed in RDF.

The Rare Disease Fund (RDF) is a charity fund where the Government matches donations 3-for-1. As at end-FY2022, the size of RDF was $143 million. For FY2023, the RDF’s projected investment income and expenditure for existing RDF beneficiaries are $4.8 million and $2.4 million respectively. Expenditure is often lower than income because new treatments are only listed for RDF coverage if the projected investment income is adequate to support all known patients requiring that treatment.

While RDF predominantly operates as an endowed fund that relies on investment income to support beneficiaries on lifelong, high-cost treatments, its coverage was recently expanded to include Cell, Tissue and Gene Therapy Products (CTGTPs) which are higher-cost one-off treatments. For CTGTPs, donors can specify that the principal sum of their donations can be drawn down.

The RDF Committee will evaluate each CTGTP application on a case-by-case basis, taking into consideration the circumstances of each patient and fund availability.