Update on Rare Disease Fund Progress

Name and Constituency of Member of Parliament
Dr Tan Wu Meng
MP for Jurong GRC

Question No. 357

To ask the Minister for Health whether he can provide an update on the progress of the Rare Disease Fund.

Answer

1.      The Rare Disease Fund (RDF) is a charity established to support Singapore Citizens suffering from rare genetic diseases, where medication is often very costly and required for life. For example, Gaucher disease, which require the drug "Cerezyme" to replace the missing enzyme the body is unable to produce, can cost a child more than $24,000 monthly. The cost will increase into adulthood, as the required dose increases with weight. It was set up in 2019 by the Ministry of Health and the SingHealth Fund in response to calls from the community to better support these Singaporeans as a caring and inclusive society. The RDF is designed to provide long-term financial support to defray the very high cost of medications of these patients over their lifetimes.

2.      Through the RDF, the Government and the community come together to support these patients and their families - the public through their donations, and the government through 3-to-1 matching of these donations. Donations are eligible for tax-exemption, and the Government also funds all administrative costs so that donations go fully to patients. The target was to raise $25 million for a start, and as at end September we have raised $21 million. Together with government seed funding and matching, the RDF currently stands at $93 million.

3.      Most of these funds are put aside into an endowment fund such that only the investment income will be used to support patients. In this way, we can sustainably support beneficiaries, and give them assurance that financial support will be available over their lifetime. An RDF Committee comprising volunteer members, and supported by clinical experts, has been appointed to assess suitable drugs and applications from patients.

4.      Six medicines that treat four rare disease conditions have been included for support from the RDF for a start. A few more drugs are under consideration. To date, the fund has 6 beneficiaries who require a total of $2 million in support since the launch of RDF. This amount is expected to increase over time as many of the patients are young and will require higher doses of medicine as they grow.

5.      Donations have understandably slowed this year. As more medicines and beneficiaries can be supported with more donations, we encourage everyone to donate generously to this cause.