SIZE ANNUAL INCOME AND EXPENDITURE OF RARE DISEASE FUND

NOTICE PAPER NO. 2248
NOTICE OF QUESTION FOR WRITTEN ANSWER
FOR THE SITTING OF PARLIAMENT ON OR AFTER 4 OCTOBER 2023

Name and Constituency of Member of Parliament
Mr Leong Mun Wai
Non-Constituency MP

Question No. 5032

To ask the Minister for Health (a) what is the current size, annual income, and annual expenditure of the Rare Disease Fund (RDF); (b) whether the 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 the RDF.

Answer

1     The Rare Disease Fund (RDF) is a charity fund where Government matches donations 3-for-1.  As at end-FY22, the size of RDF is $143 million. For FY23, 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. 

2     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.  

3     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.